Tracing the Use of the Family Management Framework and Measure: A Scoping Review:

Kathleen A. Knafl; Janet A. Deatrick; Agatha M. Gallo; Beth Skelton

doi:10.1177/1074840721994331

Tracing the Use of the Family Management Framework and Measure: A Scoping Review:

Knafl, Kathleen A.; Deatrick, Janet A.; Gallo, Agatha M.; Skelton, Beth 2021-03-20 00:00:00 This article reports the results of a scoping review of research applications of the Family Management Style Framework (FMSF) and the Family Management Measure (FaMM). We identified 32 studies based on the FMSF and 41 studies in which the FaMM was used, 17 of which were based on the FMSF. Both the framework and measure have been used by investigators in multiple countries, with most applications of the FaMM outside the United States. Although the FMSF and FaMM were originally developed for use with families in which there was a child with a chronic physical condition, both have been applied to a broader range of health conditions and to studies focusing on families with an adult member facing a health challenge. Based on our findings, we make recommendations for how researchers can more fully address all aspects of the FMSF. Keywords family research, family management, scoping review Published three decades ago (Knafl & Deatrick, 1990), the 2010 Janice Bell, the editor of the Journal of Family Nursing Family Management Style Framework (FMSF) conceptual- (JFN), invited the submission of manuscripts for a special ized how families with a child with a chronic condition issue addressing “New Directions for the Family Management incorporated condition management into daily family life. Style Framework” that extended the framework to condi- The FMSF described key elements of family management tions and/or sociocultural contexts not included in the initial related to how family members defined their situation, their conceptualization. Published in May 2012, the special issue management behaviors, and the consequences of condition reported studies focusing on family management of serious management for family life. Recognizing that these elements and life-threatening conditions in both children (Bousso might differ across family members, we also pointed to the et al., 2012; Rempel et al., 2012) and adults (Beeber & need to explicate further the elements of family management Zimmerman, 2012; Wiegand, 2012), studies completed out- and identify overarching family management patterns. side North America (Bousso et al., 2012), and a study of ado- Research aimed at further developing the framework and lescents’ perspectives of family management of chronic identifying patterns of family management was first pub- conditions (Wollenhaupt et al., 2012). lished in 1996 by Knafl and colleagues. In the absence of a measure of family management, early Building on research on family response to childhood studies applying the FMSF were largely qualitative. We rec- conditions, we continued to refine the framework, publishing ognized that to examine the association between family two updated versions (Knafl & Deatrick, 2003; Knafl et al., 2012). Based on research evidence, the updated versions of The University of North Carolina at Chapel Hill, USA the FMSF added family and family member functioning as University of Pennsylvania, Philadelphia, USA outcomes of family management. The most recent version of University of Illinois at Chicago, USA the framework is displayed in Figure 1, which also highlights Corresponding Author: the changes made as the framework was developed. These Kathleen A. Knafl, Professor, School of Nursing, The University of North initial conceptualizations of family management were Carolina at Chapel Hill, Carrington Hall #7640, Chapel Hill, NC 27599, grounded in studies of predominantly North American fami- USA. lies in which a child had a chronic physical condition. In Email: kknafl@email.unc.edu 88 Journal of Family Nursing 27(2) Figure 1. Family Management Style Framework. Major Components—Definition of the Situation (child identity, view of condition, management mindset, parental mutuality); Management Behaviors (parenting philosophy, management approach); Perceived Consequences (family focus, future expectations). management and family and family member functioning, a Arksey and O’Malley (2005), we identified and screened measure of family management was needed. Funding from research reports for inclusion in the sample, extracted the the National Institute of Nursing Research supported the information from the reports needed to address the purpose work to develop a family management measure. A question- of the review, and collated and summarized the results. With naire was created with items based on the FMSF; the mea- support from a research librarian based at the first author’s sure’s psychometric properties were assessed from a study of university, we identified articles citing one or more versions more than 500 parents with children with varied non-life- of the FMSF and/or the FaMM published through June 30, threatening chronic physical conditions. Publication of the 2019. Articles were identified through citation searches of Family Management Measure (FaMM) included its method- the Scopus, Web of Science, and Google Scholar databases. ological development and provided evidence of its reliability Following identification of all articles citing the FMSF and/ and validity (Knafl et al., 2011). The measure comprised six or the FaMM, the first author reviewed articles to differenti- separately scored scales (Child Daily Life, Condition ate research from nonresearch applications of the FMSF and Management Ability, Condition Management Effort, Family FaMM. Research applications were defined as those in which Life Difficulty, Parental Mutuality, and View of Family the FMSF provided the conceptual underpinnings of a Impact) with a total of 53 Likert-type items. Researchers research study or secondary analysis or the FaMM was used have the option of using all or a subset of the scales. There is in the study. In some articles, the framework or measure was no summary score because each scale measures a different cited in a background or discussion section but was not aspect of family management. The instructions to the FaMM applied in the research being reported. Other nonresearch define family as “those living in your household that you applications included citations in a review article or publica- think of as family.” The publication of the FaMM set the tions focusing on theory or methods. Other than tallying the stage for subsequent quantitative studies, including investi- number of such citations, these reports were excluded from gations directed to examining the relationship between fam- further analysis. The co-authors reviewed the research versus ily management and child and family outcomes, as well as nonresearch categorization, with any disagreements resolved identification of patterns of family management. through discussion to reach consensus. Although we were aware of ongoing applications of the The following information was extracted from each study: FMSF and FaMM, we had not systematically tracked the country where data were collected, study aims, sample (num- extent of their use. We recognized that such tracking would ber of families; family members participating), condition(s) be useful in evaluating the applicability of both, thereby included in the sample, and design. For studies based on the informing study design and decision-making of future inves- FMSF, which aspects of the FMSF (contextual influences, tigators. Our intent in this review was to determine how the components/dimensions, management style, outcomes) were FMSF and FaMM have been used in research by examining addressed in the research were noted. For studies using the the aims, sample, and design of published research reports. FaMM, we also noted the conceptual underpinnings and We conducted a scoping review of published studies to summarized how the measure was used in the study (e.g., assess the extent and ways in which the FMSF and FaMM independent versus dependent variable) and any data pro- had been used. Following guidelines recommended by vided on the reliability of the six FaMM scales. Four Knafl et al. 89 summaries were completed, one for each of the three ver- Table 1. Number of Reports Citing the FMSF or the FaMM. sions of the FMSF and one for the FaMM. Published research based The first three authors divided the work of extracting the on FMSF or FaMM Other data from the research reports. As a quality check, the fourth Number of studies/ citations to author independently extracted the same information from Citation number of reports FMSF or FaMM every fifth article. These checks revealed we were thorough FMSF 1990 8/8 59 and accurate in the data extractions and only minor correc- FMSF 2003 16/23 46 tions were made to the initial extractions. FMSF 2012 8/10 34 The analysis was straightforward and included simple FaMM 41/44 38 listings and counts (e.g., countries where data were collected, Total 73/85 177 conditions studied) and categorization of certain aspects of the study (e.g., aims, design, use of FaMM). The first author Note. Each study was counted in one tally only. If more than one version of FMSF was cited, only the most recent version was counted in the did the initial categorizations, which were then reviewed by tally. Studies using the FaMM and citing the FMSF were tallied under the the co-authors. Any disagreements were resolved through FaMM. FMSF = Family Management Style Framework; FaMM = Family discussion to reach consensus. If more than one version of Management Measure. FMSF was cited in the research report, only the most recent version was counted in the tally. of children’s feeding problems and SanGiacomo and col- leagues (2019) described the management challenges Results reported by mothers of childhood brain tumor survivors. In four studies (Conlon et al., 2008; Knafl et al., 1996; McCarthy Final Sample & Gallo, 1992; Obrecht et al., 1992), investigators described In Table 1, the breakdown of the 262 published articles citing changes in family management over time. One investigator one or more versions of the FMSF or citing the FaMM is (Johnson et al., 2014) used the framework to support devel- summarized. The FMSF was named as the conceptual opment of a social script iPad application for children with grounding in 32 studies and the FaMM was used in 41 stud- autism. ies, 17 of which were based on the FMSF. Each study was Beginning with the 1990 version of the FMSF, investiga- counted in one tally only to avoid artificially inflating the tors were extending the framework to the study of health number of studies based on the FMSF. Studies using the challenges not included in its original development. For FaMM and citing the FMSF were tallied under the FaMM. example, Krouse (2002) applied it in a study of family man- Both the FMSF and the FaMM also were cited in nonre- agement of feeding low birthweight infants; Van Riper search articles and research reports where they were not (2005) explored the family experience of genetic testing; and applied but were referenced in the background or discussion Raymond and colleagues (2017) described parents’ perspec- sections of the article. These were categorized as “Other tives on managing the care of their adult child with serious Citations.” Eight reports citing the FaMM addressed efforts mental illness. to assess or adapt it for use with non-English samples. In Consistent with their descriptive or exploratory intent, contrast to the tally for “Published Research Based on FMSF most investigators described their study design as qualita- or FaMM,” when reports in the “Other” category included tive, with six being longitudinal. In most studies (n = citations to multiple versions of the FMSF, each of these cita- 25/78%), investigators addressed a single condition (e.g., tions was tallied. The rationale for this was that authors were Type 2 diabetes, end-stage renal disease) or group of related using the citations to support their work, and thought it nec- conditions (e.g., cancer, serious mental illness). In eight stud- essary, in some cases, to cite multiple versions. ies, researchers focused on a health-related challenge not linked to a specific condition (e.g., technology dependence, feeding problem). The number of families included in the FMSF samples ranged from case studies of one or two families to As summarized in Table 2, study participants for most (n = (Gallo, 1990; McCarthy & Gallo, 1992; Obrecht et al., 1992; 26/81%) of the 32 studies based on the FMSF were recruited Van Riper, 2005) to Toly and colleagues’ (Toly et al., 2012a, in the United States, although investigators from Brazil, 2012b; Toly & Musil, 2015) study of more than 100 families Thailand, and Canada also published study results. The of children with technology dependence. About one half research aims of the studies citing the FMSF were most often (51%) of studies enrolled 20 families or less and only four descriptive or exploratory such as an early study by Williams studies enrolled participants from 50 or more families. (1995) describing the problems and management behaviors Family members included in the sample varied across used by mothers of daughters with precocious puberty or studies. In nine studies, sample inclusion criteria required Turner syndrome. More recently, Estrem and colleagues participation by multiple family members, with five focusing (2017) applied the FMSF to a study of family management on dyads within the family. For example, both Beacham and 90 Table 2. Overview of Studies Conceptually Grounded in FMSF. Country where data Sample (families/family Study were collected Aims members) Condition(s) studied Design Aspects of FMSF addressed in study 1990 Version of FMSF Edwards-Beckett & USA To describe parents’ perception contextual 30 families (30 mothers, 27 Myelomeningocele Qualitative description • Contextual influences (derived Cedargren (1995) influences and their level of supportiveness fathers) from data) Gallo (1990) USA To describe a family with a child with One family (mother, Type 1 diabetes Qualitative case study • Contextual influences (resources) diabetes from the individual members’ and father, child, sibling) • Components/dimensions of family family’s point of view management • Management style Knafl et al. (1996) USA To identify styles of family response to 63 (62 mothers, 53 fathers, Multiple, non- Longitudinal qualitative • Contextual influences (resources) childhood chronic illness and explore their 66 children 7–14 y/o life-threatening description • Components/dimensions of family relationship to family and family member [three families with two chronic conditions management functioning ill children], 28 siblings) • Management styles Krouse (2002) USA To identify, describe, and provide a 13 families (13 mothers) Low birth weight Longitudinal qualitative • Contextual influences (social theoretical analysis family management of description support) breastfeeding a low birth weight infant • Components/dimensions of family management • Management styles McCarthy & Gallo USA To describe family management of Type 1 One family (mother, father, Type 1 diabetes Longitudinal qualitative • Contextual influences (social case study support, resources) (1992) diabetes and compare responses from the child with condition, two individual family members siblings) • Components/dimensions of family management • Management styles Murphy (1990) USA To illustrate three management styles 20 families (20 mothers, 20 High-risk infants Grounded theory • Components/dimensions of family adopted by couples following the birth of a fathers) management high-risk infant • Management styles Obrecht et al. (1992) USA To describe how a family with a child One family (mother, End-stage renal Longitudinal case • Components/dimensions of family with end-stage renal disease defined and father, child with disease study management managed their situation condition, sibling) • Management styles Williams (1995) USA To identify the problems and management 12 families (12 mothers) Precocious puberty Qualitative description • Contextual influences (care behaviors used by mothers in attempting to and Turner providers and systems) solve problems in school, peer, and family syndrome • Components/dimensions of family life for their daughters with precocious management puberty or Turner syndrome • Management styles (continued) 91 Table 2. (continued) Country where data Sample (families/family Study were collected Aims members) Condition(s) studied Design Aspects of FMSF addressed in study 2003 Version of the FMSF Athaseri et al. (2008) Thailand To describe (a) definition, (b) management 22 families (22 mothers) Type 1 diabetes Qualitative descriptive • Components/dimensions of family behaviors, and (c) perceived consequences management of having a child with Type 1 Diabetes. Bingham & USA To describe how spirituality assists people 27 dyads—24 husband/ Parkinson’s disease Qualitative descriptive • Contextual influences Haberman (2006) with Parkinson's Disease and their families wife; three parent/child (spirituality) in defining and managing the day-to-day experience of the disease Bousso et al. (2012) Brazil To explore how families define and manage 14 family members (11 Children attending Qualitative descriptive • Components/dimensions of family their life when they have a child or mothers, one father, one an outpatient management adolescent undergoing palliative home care aunt, one grandmother) palliative care unit Conlon et al. (2008) USA To describe changes in family management 71 families (51 mothers, 20 Attention deficit Secondary analysis • Management styles following treatment fathers) hyperactivity of archival data disorder comparing family management before and after treatment Gallo et al. (2005, USA To identify patterns of information 86 families (83 mothers, 53 Varied single gene Mixed methods • Contextual influences (resources) 2009) management and explore their relationship fathers, six others) conditions • Components/dimensions of family to individual and family characteristics and management functioning • Family information management styles • Outcomes (parent, family) Hopkins & Gallo USA To describe mothers’ perception of their 41 families (41 mothers) Sickle cell anemia, Qualitative descriptive; • Contextual influences (care (2012) children’s school life within the context of cystic fibrosis secondary analysis providers and systems) overall family management • Components/dimensions of family management Johnson et al. (2014) USA To examine the effectiveness of the social 32 parent–child dyads Autism spectrum Pilot feasibility study Not specified script intervention, “Going to Imaging” disorder for randomized application (iPad app) control trial Knafl et al. (2010) USA To identify the parents’ perceptions of 28 families (28 mothers, 20 Varied single gene Qualitative • Components/dimensions of family normalization and the meaning attributed fathers) conditions description; management to its presence or absence secondary analysis (continued) 92 Table 2. (continued) Country where data Sample (families/family Study were collected Aims members) Condition(s) studied Design Aspects of FMSF addressed in study Mendes-Castillo et al. Brazil To understand the family management of Eight families (eight Liver transplantation Qualitative description • Component/dimensions of family (2012); Mendes- childhood liver transplantation mothers, one father) management Castillo, Bousso, & Silva, 2014); Mendes-Castillo, Bousso, Ichikawa, et al., 2014) Misko & Bousso Brazil To understand family management of cancer Six families (six mothers) Cancer Qualitative description • Components/dimensions of family (2007) at home and decision-making related to management seeking emergency care Rempel et al. (2012) Canada To examine family management hypoplastic 24 families (24 mothers, 17 Hypoplastic left Qualitative • Components/dimensions of family left heart syndrome from diagnosis through fathers) heart description; management the early period of home care secondary analysis • Family management styles Toly et al. (2012a, USA To examine the interrelationships between 102 families (102 mothers) Technology Hypothesis testing; Not specified 2012b); Toly & normalization, maternal depression, level dependent longitudinal Musil (2015) of child’s technological dependence and children living at illness severity, family functioning, and home sociodemographic characteristics Van Riper (2005) USA To explore the family experience of genetic Two families (Case 1— Huntington disease Case study • Components/dimensions of family testing husband, two daughters; (Case 1) management Case 2—three adult Breast cancer gene sisters) (Case 2) Wiegand et al. USA To describe family management after the 19 families (56 family Unexpected life- Phenomenology • Components/dimensions of family (2008); Wiegand death of a family member who had life- members) threatening illness management (2012) sustaining therapy withdrawn of injury • Family management styles Wirattanapokin et al. Thailand To explore patterns of self-management 16 families (16 Prediabetes and Grounded theory • Contextual influences (social (2013) among adolescents with prediabetes or adolescents) Type 2 diabetes support, resources) Type 2 diabetes • Components/dimensions of family management • Family management styles Wollenhaupt et al. USA To uncover the family management 25 families (25 adolescents Spina bifida Qualitative descriptive; • Components/dimensions of family (2012) perspectives of adolescents with spina 12–21 y/o) secondary analysis management bifida Young (2013) USA To explore how families with children at 15 families (15 patients, 14 Bone marrow Qualitative description • Components/dimensions of family home manage 4–12 months after an adult adult significant others) transplant management family member had been discharged from the hospital following a bone marrow transplantation (continued) 93 Table 2. (continued) Country where data Sample (families/family Study were collected Aims members) Condition(s) studied Design Aspects of FMSF addressed in study 2012 Version of FMSF Beacham & Deatrick USA To describe children’s perceptions of family 32 families (32 children, 32 Multiple non- Qualitative description • Components/dimensions of family (2015) management parents) life-threatening management chronic conditions Cody et al. (2018) USA To describe the perspectives (view of the 19 families (19 family Adult hospitalized Qualitative description • Components/dimensions of family illness, role in future management, and members—unspecified) on Intensive care management long-term consequences on individual and unit family functioning) of family members of patients in the intensive care unit who participated in family bedside rounds versus those who did not Estrem et al. (2017) USA To describe parents’ perspectives of their Nine families (nine Feeding problem Qualitative description • Components/dimensions of family child’s eating and of feeding management mothers, three fathers) management and to identify themes of feeding management in the context of everyday family life Fleming, Knafl, & Van USA To examine, based on the gender of the Nine families (nine Congenital adrenal Mixed methods • Components/dimensions of family Riper (2017) child, the varying family experiences of mothers, seven fathers) hyperplasia analysis based on management having a child with congenital adrenal qualitative interviews hyperplasia Koplow et al. (2015a, USA To examine the experiences of family 10 families (10 primary Older family Longitudinal qualitative • Contextual influences (social 2015b) members in the nursing home placement caregivers; varied family member in a description support) and care of an older family member relationships) nursing home • Components/dimensions of family management Raymond et al. USA To describe parents’ perspectives on 30 families (30 parents; Serious mental Qualitative description • Contextual influences (care (2017) managing the care of their adult child with predominantly mothers) illness providers and systems) serious mental illness; functioning • Components of family management SanGiacomo et al. USA To describe the family management 45 families (45 mothers) Brain tumor survivor Mixed methods; • Component/dimensions of family (2019) challenges facing families of childhood brain secondary analysis management tumors data from qualitative • Family management styles interviews Note. FMSF = Family Management Style Framework. a b Sociocultural context listed only if included in the analysis beyond describing demographic characteristics of sample. Research study was the unit of analysis. 94 Journal of Family Nursing 27(2) Deatrick (2015) and Johnson and colleagues (2014) recruited Seventeen of the 41 studies using the FaMM were based child–parent dyads; Murphy (1990) included mother–father on the FMSF, eight of which were conducted outside the dyads; and Young (2013) recruited adult patients who had United States. Eighteen studies were based on other frame- received a transplant and an adult family member. works, providing evidence that the FaMM is suitable for use Investigators reporting family case studies included data in studies with diverse theoretical underpinnings. Authors of from an even broader range of family members. McCarthy six studies did not report using a framework. Five studies of and Gallo (1992) purposely selected a family for their case families of children with Down syndrome undertaken in study of family management that included interview data Ireland (Caples et al., 2018), Korea (Choi, 2015; Choi & Van from the mother, father, child with the chronic condition, and Riper, 2014), Taiwan (Hsiao, 2014; Hsiao & Van Riper, one sibling. Investigators in nine studies offered family 2011), and the United States (Van Riper et al., 2018) were members the option of participation by multiple family based on the Resiliency Model of Family Stress, Adjustment, members, but this was not a requirement for inclusion in the and Adaptation (McCubbin & McCubbin, 1993). Other sample. In other studies, a family member fulfilling a speci- examples of using the FaMM in studies not based in the fied family role (e.g., primary caregiver) was recruited and FMSF include Muscara and colleagues’ (2015; Rayner et al., the family designated who would represent them in the sam- 2016) use of Kazak’s Pediatric Medical Traumatic Stress ple. When families were given the option of participation by Model (Kazak et al., 2006) in their study of parents of chil- multiple family members or asked to designate a family par- dren with a life-threatening condition and Son, Kim, and col- ticipant, the final sample predominantly comprised mothers. leagues' (2018) use of Bandera’s Self-Efficacy Theory In seven studies, inclusion criteria specified mothers. (Bandura, 1997) to examine factors influencing family man- We also examined the extent to which investigators stud- agement in the context of having a child with atopic derma- ied all or selected aspects of the framework. Across the 32 titis. In two studies, investigators reported using two studies based on the FMSF, Gallo and colleagues’ (2005, frameworks, one of which was the FMSF (Salvador et al., 2009) study of family information management was the only 2019a, 2019b; Van Riper et al., 2018). In 30 studies, investi- one that addressed all four aspects of the framework gators used all FaMM scales. In the remaining 11 studies, (Contextual Influences, Major Components, Management investigators used selected scales. Styles, and Outcomes). More often researchers studied For the 17 studies based on the FMSF and using the selected aspects of the framework. Investigators addressed a FaMM, we also examined what aspects of the framework single aspect of the FMSF in 14 studies and two or three investigators studied. Because the FaMM scales were aspects in 15 studies. Of the 14 studies focusing on a single grounded in the FMSF dimensions, all studies addressed this aspect of the framework, most (n = 11) focused on describing aspect of the framework. Except for Lindsey’s (2016) study how the six dimensions of family management were reflected of family management following parents’ participation in a in their sample. For example, Estrem and colleagues (2017) respite program and Im and colleagues’ (2019) study of the used the dimensions of the framework to describe parents’ mediating effect of family management on the relationship efforts to manage a child’s feeding problems and Misko and between parental stress and child quality of life, all other Bousso (2007) used them to describe family management of studies addressed multiple aspects of the framework. a child’s cancer at home. In 12 of the 32 studies, investigators Researchers in 11 studies measured outcomes of family man- went beyond describing how the FMSF dimensions were agement for the person with the condition, parents, and/or reflected in their sample to identify styles of family manage- the family system and investigators in eight studies exam- ment based on the FMSF dimensions, with the styles varying ined contextual influences on family management, with most across samples. For example, Rempel and colleagues (2012) addressing resources. described changing patterns of family management in parents Across studies, investigators incorporated the FaMM in of children who were surgically treated for a life-threatening varying ways. Using correlation or regression analyses, 28 cardiac condition. Investigators in nine studies examined par- studies focused on examining the relationship between family ents’ perceptions of the link between the contextual influ- management as measured by one of more FaMM scales and ences included in the framework and family management. other family or family member variables. For example, Gibson-Young and colleagues (2014) examined the relation- ship between maternal perceptions of Condition Management FaMM Ability and Condition Management Effort and asthma mor- In Table 3, the characteristics of studies using the FaMM are bidity in 101 children in the United States. Lohan and col- summarized, and in Tables 4 and 5, reports of the internal leagues (2017) studied the relationship between parents’ consistency reliability (ICR) for FaMM scales are presented. Condition Management Effort and their perceptions of their Researchers from 11 countries have reported using the diabetes self-efficacy. In other studies, investigators exam- FaMM. In contrast to the FMSF where U.S.-based samples ined variables such as parental age (Close et al., 2016) or fam- predominated, the majority (n = 25/61%) of studies using ily functioning (Zhang et al., 2015) as predictors of family the FaMM were conducted outside the United States. management. In seven studies, investigators examined the 95 Table 3. Overview of Studies Using the FaMM. Country where Sample design and no. of families Aspects of FMSF addressed in a,b Article data collected Aims (as stated by authors) Conceptual framework and family members Sample—condition Design How family management scales used study Caples et al. (2018) Ireland To examine families of children with Down Resiliency Model of Family 95 families (79 mothers, 16 fathers) Down syndrome Mixed methods Predictor—FaMM scales as predictor Not applicable syndrome residing in Ireland adapt to their Stress, Adjustment, and of family adaptation child’s diagnosis Adaptation Choi (2015) Korea To examine factors influencing family Resiliency Model of Family 147 families (147 parents— Down syndrome Mixed methods Predictor—FaMM scales as predictor Not applicable adaptation in Korean families with a child Stress, Adjustment, and unspecified) of family adaptation with Down syndrome Adaptation Choi & Van Riper Korea To explore Korean mothers’ perceptions of Resiliency Model of Family 105 families (105 mothers) Down syndrome Descriptive Predictor—FaMM scales as predictor Not applicable (2014) their typically developing children when Stress, Adjustment, and cross-sectional of sibling adaptation there is a child with Down syndrome in Adaptation survey the family Close et al. (2016) USA To describe family management challenges FMSF 40 families (33 mothers, seven Klinefelter Mixed method Outcome—Influence of parents’ age • Contextual influence (care for parents who have sons with Klinefelter fathers) syndrome on family management providers and systems) Syndrome • Components/dimensions of family management • Outcomes (parent and family) Deatrick et al. USA To test a hypothesized model of caregiver Model based on literature 186 families (186 mothers) Brain tumor Cross-sectional Predictor—Management Ability scale Not applicable (2014) competence. and Raina et al., theoretical survivors telephone as predictor caregiver competence stress process model survey Deatrick et al. USA To develop a typology of family management FMSF 186 families (186 mothers, 134 Brain tumor Mixed methods Descriptive—patterns of family • Contextual influences (2018) patterns of brain tumor survivors and survivors) survivors management based on scales (resources) examine the relationship between pattern Correlate—patterns and family • Components/dimensions of membership and family functioning and function and mother and survivor family management health-related quality of life health-related quality of life • Family management styles • Outcome (survivor, mother, and family functioning) Duangdech et al. Thailand To validate a causal model of factors Resiliency Model of Family 208 families (131 mothers; identity Cerebral palsy Cross-sectional Mediator—Family management as Not applicable (2017) contributing to the health status of children Stress, Adjustment, of other family members correlational a mediator of the relationship with cerebral palsy in Thailand and Adaptation and the unspecified) between social support, family literature hardiness, access to care, illness severity and of child’s health status Fleming, Knafl, USA To describe adrenal crisis events in children FMSF 68 families (60 mother, 15 fathers, Congenital adrenal Mixed methods Correlate—relationship between • Components/dimensions of Knafl, & Van with congenital adrenal hyperplasia and two grandmothers) hyperplasia Management Ability and View Family family management Riper (2017) examine the relationship between parents’ Impact • Outcome (family functioning) perceived management ability and the impact of the condition on family life Geense et al. (2018) Netherlands To identify outcome measures and assess Not reported 85 families (83 mothers; 50 fathers) Chronic kidney Randomized Outcome—Family management Not applicable potential effectiveness, and design issues disease controlled trial outcome of intervention for a web-based intervention for parents of feasibility study children with kidney disease Gibson-Young et al. USA To examine the relationships between FMSF 101 families (101 mothers) Asthma Cross-sectional Correlate—Management Ability and • Components/dimensions of (2014) maternal caregiver perceptions of family survey Effort scales and asthma morbidity family management management and asthma morbidity • Outcome (ill child) Hackworth et al. Australia To describe the protocol for a study evaluating Not reported 120 families (120 adolescents, 120 Type 1 diabetes Randomized Outcome—Family Management Not applicable (2013) the efficacy of an online adolescent and parents or guardians) control trial outcome of intervention parenting intervention (continued) 96 Table 3. (continued) Country where Sample design and no. of families Aspects of FMSF addressed in a,b Article data collected Aims (as stated by authors) Conceptual framework and family members Sample—condition Design How family management scales used study Hickey et al. (2018) Australia To test the efficacy of a family intervention Not reported 47 families (38 mothers, 29 fathers, Brain injury Randomized Outcome—Family management Not applicable in promoting early adaptation to a child’s four siblings, one grandmother) control trial outcome of intervention acquired brain injury Baseline usual care (18 mothers, 11 fathers, one sibling) Hobbie et al. (2010) USA To determine the educational needs of Not reported 15 families (15 caregivers Cancer Descriptive, Descriptive—Family management Not applicable parents as their children completed cancer unspecified) cross-sectional following treatment treatment and assess the feasibility of measuring parental needs, anxiety, and family management as treatment ends Hsiao (2014); Hsiao Taiwan To explore the relationships among family Resiliency Model of Family 83 families (80 mothers, 75 fathers) Down syndrome Cross-sectional Correlate—Family Management scales Not applicable & Van Riper demographics, family demands family Stress, Adjustment, and survey and family adaptation (2011) appraisal, and individual and family adaption Adaptation Im et al. (2019) Korea To examine the relationship between parenting FMSF 93 families (90 mothers, three Epilepsy Cross-sectional Mediator—Family Management as • Components/dimension of stress and quality of life in children with fathers) survey design mediator of relationship of parental family management epilepsy and the mediating effect of family stress and child quality of life management D. H. Kim & Im Korea To examine the influence of family management FMSF 158 families (149 mothers, five Cancer Cross-sectional Correlate—Family Management scales • Contextual influences (2015) on psychosocial problems of childhood fathers, four grandparents) survey and child’s psychosocial problems (resources) cancer survivors in Korea • Components/dimensions of family management • Outcomes (survivor functioning) I. Kim et al. (2016) USA To examine the relationships between child FMSF 234 families (234 mothers) Autism Cross-sectional Mediator—Family Management as a • Components/dimensions of behavior problems and mothers’ depressive survey mediator of relationship between family management symptoms child’s behavior problems and • Outcomes (maternal mother’s depressive symptoms functioning) Knafl et al. (2013) USA Identify patterns of family management and FMSF 414 families (414 mothers, 161 Multiple chronic Cross-sectional Descriptive—Patterns comprised • Components/dimensions of examine their relationship to child and family fathers) physical survey Family Management scales family management functioning conditions • Family management styles • Outcomes (child and family functioning) Lerret et al. (2015) USA To examine parents’ readiness of hospital Meleis Transitions Theory 51 families (44 females, seven Solid organ Prospective, Outcome—Influence of discharge Not applicable discharge and its relationship to males) transplant longitudinal, readiness Condition Management postdischarge coping, family impact, correlational Effort scale adherence to medications, and follow-up, design and utilization of following hospital discharge. Lindsey (2016) USA To examine in families that have a child with FMSF 22 families (20 mothers, one father, Children with Mixed method Outcome—respite camp program • Components/dimensions of a special health care needs, what are the one grandmother) special health leading to better family Management family management effects of respite care through a therapeutic care needs summer day camp program on family management Lohan et al. (2017) Australia Literature-based model 186 families (178 mothers, eight Type 1 diabetes Cross-sectional Correlate—Relationship of Not applicable fathers) survey Management Effort to parents’ diabetes self-efficacy Mendes et al. Portugal To compare family functioning and parents’ and Socioecological framework 263 families (227 mothers, 36 Asthma, obesity, Cross-sectional Mediator—Family Life Difficulty and Not applicable (2016) children’s adaptation to chronic conditions of adaptation fathers) epilepsy, survey Parental Mutuality as mediator of diabetes relationship between family cohesion and family member adaptation (continued) 97 Table 3. (continued) Country where Sample design and no. of families Aspects of FMSF addressed in a,b Article data collected Aims (as stated by authors) Conceptual framework and family members Sample—condition Design How family management scales used study Mendes et al. Portugal To examine the moderating role of parents’ Social Comparison 201 families (201 primary Epilepsy Cross-sectional Predictor—Child Daily Life and Family Not applicable (2017) social comparison orientation in the Orientation caregivers, 201 children) survey Life Difficulty as predictor of child’s associations between family management and health-related quality of life and children’s health-related quality of life and perceived stigma perceived stigma Muscara et al. Australia To examine the prevalence and trajectory Kazak’s Pediatric Medical 192 families (180 mothers, 76 Child with a Prospective Moderator—FaMM used as a measure Not applicable (2015); Rayner of parent psychosocial distress, identify Traumatic Stress Model fathers) life-threatening longitudinal of the illness experience, which was et al. (2016) demographic, psychosocial and illness-related illness or injury survey described as a moderator parents’ predictors of parent psychosocial distress psychosocial distress over time, and examine the relationship between parent psychosocial distress and child psychological well-being Quast et al. (2018) USA To examine the prospective influence of Paterson and Drotar’s 35 families (35 mothers) Brain tumor Longitudinal Correlate—Family Life Difficulty and Not applicable family functioning on survivor quality of life theoretical model survivors survey survivor quality of life months later of childhood cancer survivorship Quast et al. (2016) USA To describe the physical and psychosocial Raina’s conceptual model of 50 families (48 mothers, two Brain tumor Longitudinal Correlate—Relationship of Condition Not applicable health-related quality of life of parents caregiving fathers) survivors survey Management Effort and Condition of brain tumor survivors and variables Management Ability to parents’ associated with parents’ quality of life quality of life Rearick et al. (2011) USA To explore the experiences of parents and Adapted version of Ireys 11 families (8 mothers, 3 fathers) Type 1 diabetes Mixed methods Descriptive—FaMM scales used to Not applicable children newly diagnosed with Type 2 et al.’s (2001) Social describe parents’ experiences diabetes with peer social support following Support Framework an intervention to enhance support Salvador et al. Portugal To examine the contribution of individual and FMSF 205 families (177 mothers, 28 Cancer—in Cross-sectional Correlate—Relationship of Family Not applicable (2019a, 2019b) family factors to psychological well-being Social ecological Theory fathers) treatment or survey Life Difficulty, Parental Mutuality of parents of children and adolescents completed to parenting satisfaction, parental diagnosed with cancer. treatment in past anxiety and depression 5 years Sananreangsak et al. Thailand To examine variables contributing to parents’ FMSF 88 families (69 mothers, 16 fathers, Thalassemia Cross-sectional Predictor—FaMM scales as predictor • Component/dimensions of (2012) medical, role, and psychosocial management three unknown) survey of medical management, role family management behaviors management, and psychosocial • Outcome (family functioning) management Sheng et al. (2018) China To explore the relationships between family Hypothesized model based 268 families (268 youth, 181 Diabetes, Cross-sectional Predictor—family management as a Not applicable management, self-management, and on the literature mothers, 46 fathers, 41 rheumatic survey predictor of youth self-management, transition readiness grandparents) disease, renal transition readiness, and quality disease of life Son, Kim, et al. Korea To identify the variables that affect family Bandura’s Self-Efficacy 168 families (168 mothers) Atopic dermatitis Cross-sectional Outcome—Influence of disease Not applicable (2018) management of childhood atopic dermatitis Theory survey severity on Condition Management Effort Predictor—Condition Management Effort as a predictor of Condition Management Ability Effort Son, Song, et al. Korea This study aimed to identify the effects of None reported 109 families (109 mothers) Chronic allergic Cross-sectional Outcome—Influence of mother- Not applicable (2018) the mother-medical staff partnership on diseases survey medical staff partnership on mothers’ condition management ability Condition Management Ability (continued) 98 Table 3. (continued) Country where Sample design and no. of families Aspects of FMSF addressed in a,b Article data collected Aims (as stated by authors) Conceptual framework and family members Sample—condition Design How family management scales used study Sullivan-Bolyai et al. USA To explore feasibility/ability to recruit and FMSF 22 families (22 mothers, 22 youth) Type 2 diabetes Randomized Outcome—Family management as an • Contextual influences (2016) conduct a two-arm trial on reeducation, controlled outcome of trial (resources) collaboration, and social support trial Feasibility • Components/dimensions of study family management Swallow et al. England To describe the protocol for an online parent None reported 80 families (80 primary caregivers— Kidney disease Randomized Outcome—Family management as an Not applicable (2012) information and support package for home- unspecified) controlled trial outcome of trial based care feasibility study Van Riper et al. USA To compare family management of children FMSF Chronic physical conditions—412 Multiple chronic Secondary Descriptive—Comparison of family • Contextual influences (2018) with a chronic physical condition to family Resiliency Model of Family families (253 mothers, 159 physical analysis of management in two groups (resources) management of a child with Down syndrome Stress and Adaptation fathers) conditions data from two • Components/dimensions of using data from two studies Down syndrome − 483 families Down syndrome cross-sectional family management (427 mothers, 56 fathers) survey Verchota & Sawin USA To examine the relationship of key individual Family Self-Management 103 families (103 parent-adolescent Type 1 diabetes Cross-sectional Correlate—Relationship of Family Not applicable (2016) and family self-management theory, context, Theory dyads) survey Life Difficulty to self-management and process variables on proximal and behaviors of adolescents distal outcomes in adolescents with Type 1 diabetes Weissheimer et al. Brazil To investigate the relationship of family FMSF 141 families (117 mothers, 19 Neurologic Cross-sectional Correlate—Relationship of all FaMM • Contextual influences (2018) management to socio-demographic and fathers, five other family conditions survey scales to child’s physical dependence (resources) physical dependence aspects of children and members) and multiple socio-demographic • Components/dimensions of adolescents with neurological disorders variables family management • Outcome (child) Zhang et al. (2014) China To identify patterns and predictors of family FMSF 387 (257 mothers; other family Multiple chronic Cross-sectional Descriptive—Identified patterns of • Components/dimensions of management members not specified) physical survey family management based on FaMM family management conditions scales • Family management styles Outcome—Influence of child and family functioning on management pattern Zhang, Wei, Han, China To determine the applicability of the Family FMSF 538 families (primary caregivers— Multiple chronic Cross-sectional Outcome—Influence of contextual • Contextual influences et al. (2013) Management Style Framework for Chinese unspecified) physical survey variables on family management (resources) families with a child who has a chronic conditions (calculated as two composite • Components of family condition scales—Easy Family Management; management Difficult Family Management) • Outcome (child and family Mediator—family management as a functioning) mediator of relationship between contextual variables and child and family functioning Zhang et al. (2015) China To determine the key predictors for each FMSF 399 families (265 mothers, Multiple chronic Cross-sectional Outcome—Child and family • Contextual influences aspect of family management in families with 89 fathers, 45 other family conditions survey characteristics and functioning (resources) children who have chronic condition members—unspecified) variables as predictors of FaMM • Components/dimensions of scales family management Zhang, Wei, Zhang, China To investigate the impact of family management FMSF 618 families (618 primary Multiple chronic Cross-sectional Predictor—FaMM scales as predictor • Components/dimensions of et al. (2013) on family functioning of families with caregivers—unspecified) physical survey of family functioning family management chronically ill children conditions • Outcome (family functioning) Note. FaMM = Family Management Measure; FMSF = Family Management Framework. a b Contextual influences limited to those included in the FMSF (social support, care providers and systems, and resources) that were included in the analysis beyond describing demographic characteristics of sample. FaMM scales measure components of Family Management Style Framework. Knafl et al. 99 Table 4. Internal Consistency Reliability of Family Management reported a range of scores across scales (Table 4), with the Measure in Studies Reporting a Range of Scores Across Scales. ICR reaching .70, often considered the cut-off for acceptable reliability (DeVellis, 2003) in three studies and .62 or higher Study Scale range for all scales in the remaining studies. Investigators for 10 Caples et al. (2018) >.70 all scales studies reported the ICR for each scale used in the study. Choi & Van Riper (2014) .63–.90 (View of Condition Regarding individual FaMM scales, Table 5 provides evi- Impact not reported) dence of the reliability of FaMM scales across multiple con- Close et al. (2016) >.68 all scales ditions and sociocultural contexts. The strongest evidence for Deatrick et al. (2018) .72–.89 ICR was for the Family Life Difficulty scale. In seven studies, Im et al. (2019) .65–.89 investigators from different countries (Korea, Portugal, D. H. Kim & Im (2015) .69–.90 United States) studying different conditions (brain tumor sur- I. Kim et al. (2016) .64–.91 vivorship, cancer, Down syndrome, epilepsy, solid organ Knafl et al. (2013) >.70 all scales transplant, multiple conditions) reported ICR scores ranging Zhang, Wei, & Han (2013) .62–.84 from .81 to .92 and no investigator reported an ICR value less Conducted multiple studies reporting same internal consistency reliability than .70. Support for the ICR of Parental Mutuality also was range, which was established in first study to determine applicability of strong with investigators from five studies based on samples the measure to families in China. representing different countries (Korea, Portugal, United States) and conditions (cancer, Down syndrome, solid organ mediating or moderating effect of FaMM scales. For exam- transplant, multiple conditions) reporting ICR scores greater ple, in a study of Korean families in which a child had epi- than .70. For the remaining four scales (Child Daily Life, lepsy, Im and colleagues (2019) examined the mediating Condition Management Ability, Condition Management effect of family management on the relationship between par- Effort, View of Condition Impact), there were reports of ICR enting stress and the child’s quality of life. The FaMM scales scores both exceeding and falling below .70, though those also were used to compare family management of different exceeding predominated and reflected samples representing types of conditions as in Van Riper and colleagues’ (2018) different countries and conditions. The weakest evidence for comparison of families of children with Down syndrome to support of ICR was for the View of Condition Impact scale. those of children with a chronic physical condition. In three Investigators in two studies (Duangdech et al., 2017; studies (Deatrick et al., 2018; Knafl et al., 2013; Zhang et al., Sananreangsak et al., 2012) incorrectly scored the FaMM by 2014), investigators used cluster analysis of the six FaMM calculating a total single score rather than individual scales scales to identify patterns of family management. scores. Across studies, samples varied as to condition, size, and family member participants. The 18 different conditions Discussion studied included chronic physical conditions such as Type 1 diabetes and asthma, cancer and other life-threatening condi- Through this scoping review, we traced the use of FMSF and tions, genetically based conditions, and conditions associ- FaMM and described the frequency and range of research ated with intellectual or developmental disabilities. Most applications across conditions, age groups, and countries. investigators studied a single condition or related conditions Our review provides evidence of the broad applicability of (e.g., cancer, neurologic disease), with only seven studies both the framework and measure and highlights areas of con- recruiting sample families in which children were diagnosed centrated activity and areas of limited application. The with different conditions. The number of families included in review also provides evidence to guide future research. these samples ranged from 11 to 895, with more than half Although the framework and measure were developed (n = 25; 61%) including more than 100 families. In 29 stud- based on studies of families in the United States with chil- ies (71%), only one family member participated in the study, dren with non-life-threatening chronic physical conditions with 13 studies explicitly recruiting mothers, six specifying not associated with developmental delays, the review pro- parent or primary caregiver, and the remaining recruiting vides strong evidence of broader applicability, especially family members in varied roles. In the latter case, mothers about the types of conditions studied and cultural context. always made up most of the sample. Investigators in four The FMSF and the FaMM have been used in studies of fami- studies recruited parent–child dyads (Hackworth et al., 2013; lies in which children have a condition that is life-threatening Sheng et al., 2018; Sullivan-Bolyai et al., 2016; Verchota & or includes intellectual disability or developmental delay. Sawin, 2016). In eight studies, participation by multiple fam- Both also have been used in studies of survivorship and the ily members was optional. aftermath of serious injury, and the FMSF has been used in Investigators varied in the extent to which they reported studies addressing family response to a health challenge fac- the ICR of the FaMM scales in their study, with 15 reporting ing an adult family member. The FaMM items reference “our no results or citing the ICR data from the instrument develop- child with the condition,” limiting the applicability of the ment study (Knafl et al., 2011). In nine studies investigators measure for studies in which an adult is the family member 100 Journal of Family Nursing 27(2) Table 5. Internal Consistency Reliability of Individual Family Management Scales. Scale ICR .70 or better ICR < 70 Child Daily Life Hsiao & Van Riper (2011)—.78 Lerret et al. (2015)—.65 Mendes et al. (2017)—.73 Van Riper et al. (2018)—.73–.79 Condition Deatrick et al. (2014)—.74 Lerret et al. (2015)—.52 Management Ability Fleming, Knafl, Knafl, & Van Riper. (2017)—.81 Quast et al. (2016)—.61 Hsiao & Van Riper (2011)—.73 Son, Kim, et al. (2018)—.81 Van Riper et al. (2018)—.72–.77 Condition Hsiao & Van Riper (2011)—.72 Lerret et al. (2015)—.51 Management Effort Quast et al. (2016)—.74 Lohan et al. (2017)—.68 Van Riper et al. (2018)—.74–.78 Son, Kim, et al.(2018)—.60 Family Life Difficulty Hsiao & Van Riper (2011)—.87 Lerret et al. (2015)—.87 (heart transplant subsample) Mendes et al. (2016)—.83 Mendes et al. (2017)—.86 Quast et al. (2018)—.81 Salvador et al. (2019a, 2019b)—.87 Van Riper et al. (2018)—.91–.92 Parental Mutuality Hsiao & Van Riper (2011)—.74 Lerret et al. (2015)—.74 Mendes et al. (2016)—.79 Salvador et al. (2019a, 2019b)—.86 Van Riper et al. (2018)—.75–.88 View Condition Impact Hsiao & Van Riper (2011)—.74 Lerret et al. (2015)—.58 Van Riper et al. (2018)—.68–.77 Note. ICR = internal consistency reliability. Range of ICR scores for two groups of parents included in secondary analysis, those with a child with Down syndrome and those with a child with a chronic physical condition. facing a health challenge. Although most researchers using et al., 2011). The scales measure different aspects of family the FaMM focused on family management of childhood management, with each scale addressing a different underlying chronic conditions, we identified several that used the FaMM latent construct. Despite the FaMM being described as com- to study family life in the context of an adult family member prising six separate scales with no total score and scoring who was living with their parents due to cognitive or physi- instructions available on the FaMM website (https://nursing. cal deficits (see, for example, Deatrick et al., 2018; Van unc.edu/research/office-of-research-support-and-consultation/ Riper et al., 2018). family-management-measure/), we found instances of investi- The review also provides evidence of the cross-cultural gators calculating a total score that was then used in their analy- applicability of the FMSF and FaMM with the first study ses. Such analyses are questionable, and we encourage anyone based on a sample from outside the United States conducted using the FaMM to adhere to scoring instructions. in Thailand (Athaseri et al., 2008). Cross-cultural applica- Across conditions and cultural contexts, most investiga- tions increased substantially after the publication of the tors have focused on examining the FMSF components FaMM and reports of its ICR support its applicability in mul- (Definition of the Situation, Management Behaviors, tiple cultural contexts. Not all authors reported the ICR data Perceived Consequences) and their underlying dimensions or for their sample. Doing so would help future investigators the FaMM scales, with less attention directed to identifying make informed decisions about the appropriateness of the patterns of family management, contextual influences, and measure for their intended sample. In addition to the ICR data outcomes. This focus is understandable given the design summarized in Table 4, Van Riper and colleagues’ (2020) complexity and resources needed to incorporate multiple analysis of the use of the FaMM with samples of parents of aspects of the framework into a single study. However, from individuals with Down syndrome from 11 countries spanning the outset the developers maintained that a strength of the North and South America, Europe, and Asia provides addi- framework was the emphasis on identifying patterns of fam- tional support for the measure’s broad applicability. ily management based on the configuration of the dimensions The items comprising the FaMM were grounded in the of family management across family members. Beginning FMSF, and the scales were identified using well-established with the first publication (Knafl & Deatrick, 1990), the frame- techniques for instrument development (DeVellis, 2003; Knafl work included influences on family management, and in the Knafl et al. 101 first revision (Knafl & Deatrick, 2003), family member and tailored interventions aimed at buttressing family manage- family system outcomes of family management were added. ment strengths and mitigating problematic aspects. Although recognizing it may not be feasible to include Sample design presents another opportunity for taking multiple aspects of the framework in a single study, we encour- full advantage of the FMSF by including multiple family age investigators focusing on selected aspects of the frame- members in the sample. Beginning with our initial conceptu- work to consider addressing those that have been less studied. alization (Knafl & Deatrick, 1990), we have emphasized the For example, contextual influences such as health insurance, value of including the perspectives of multiple family mem- access to specialty care, and family income could be included bers in studies addressing family management. Nonetheless, in the demographic and family information respondents often most investigators applying the framework or using the mea- are asked to provide and examined in the analysis as contex- sure have limited their sample to one family member, most tual influences on family management. Another possibility often the mother. The inclusion of multiple family members would be to add measures addressing social support or health in the sample provides researchers with the opportunity to care relationships to examine how these influence family man- undertake conceptually grounded, dyadic, or family system agement. The FMSF was based on syntheses of predominantly analyses examining the implications of family members hav- qualitative research addressing family response to childhood ing shared versus discrepant or conflicting views of family chronic conditions. The contextual influences included in the management (Deatrick et al., 2020). framework were based on study results reporting what family The focus of both the FMSF and FaMM is family manage- members identified as factors contributing to the ease or dif- ment within a single household and that focus is reflected in ficulty of family management. Although the contextual influ- the research applications to date. The contribution to condition ences included in the FMSF reflect issues recognized as social management of individuals outside the household is incorpo- determinants of health that are widely acknowledged as rated under the Social Network Contextual Influence. Yet to important to understanding structural impediments to families be addressed are those situations where members from multi- in managing health conditions, there are other factors that are ple households are actively involved in condition management recognized and could be included. Further attention to the as might be the case when divorced parents have shared cus- social determinants of health also calls for recognition and tody of a child or when extended family members assume study of issues such as racism that are now widely acknowl- major caregiving responsibilities. Additional studies are edged as important to explaining health disparities (Deatrick, needed to examine the unique challenges of multi-household 2017). Although recommending that researchers consider family management and factors supporting and hindering extending their study aims beyond the current focus on the effective, well-coordinated management across households. components and dimensions of family management, the body Like all scoping reviews, there were limitations to this of research addressing these provides an opportunity for one. We included only those studies published in English undertaking research syntheses of results reporting how the language journals. It is possible that our search missed rele- dimensions of family management are reflected across condi- vant publications, but we believe we minimized that possi- tions and cultures. bility by working closely with a research librarian to identify Qualitative data related to the dimensions of family man- relevant citations. The review was limited to research appli- agement and scores on the FaMM scales are the building cations because our initial screen of the reports revealed few blocks for identifying family management styles, and when clinical applications to date. Research reports often make investigators have these data, they can take the next step and recommendations related to practice applications and these extend their analysis to identifying different styles. By using provide a beginning point for clinicians to consider how the analytic approaches such as matrix display of qualitative data FMSF could guide practice or how the FaMM could be reflecting family management dimensions across families incorporated into clinical assessments. and quantitative cluster analyses based on the FaMM scales, investigators can identify styles of family management that Conclusion can be compared with those previously identified (Deatrick et al., 2018). Although full delineation of management styles, When we began developing the FMSF in the late 1980s, our requires a large enough sample to identify subgroups within objective was to provide researchers with a framework that the sample with similar patterns of family management, even would guide efforts to advance knowledge of family response with relatively small samples, investigators can undertake to childhood chronic conditions. Building on existing exploratory analyses to detect provisional management styles. research, we aimed to devise a framework that was applica- By identifying management styles and examining their rela- ble to multiple conditions and family structures. We believe tionship to family and family member outcomes, investiga- this review of research studies supports the conclusion that tors will have a better understanding of the management we achieved that goal. Over the years, others have applied approaches that put families and family members at risk for the framework to a much broader spectrum of conditions, poor outcomes. Understanding the implications of different populations, and cultural contexts than we originally antici- management styles also will contribute to the development of pated. We are grateful for their creative and innovative 102 Journal of Family Nursing 27(2) applications, which have contributed in important ways to of Neuroscience Nursing, 38(6), 422–427. https://doi. org/10.1097/01376517-200612000-00006 extending the scope of the FMSF. Bousso, R. S., Misko, M. D., Mendes-Castillo, A. M., & Rossato, In urging investigators to incorporate multiple aspects of L. M. (2012). Family Management Style Framework and its the FMSF into their studies and focus on the less developed use with families who have a child undergoing palliative care aspects of sociocultural context, management styles, and at home. Journal of Family Nursing, 18(1), 91–122. https://doi. outcomes, we recognize this often requires design trade-offs, org/10.1177/1074840711427038 especially regarding sampling. Trade-offs typically entail Caples, M., Martin, A. M., Dalton, C., & Marsh, L. (2018). balancing the ideal family research design with the reality of Adaptation and resilience in families of individuals with limited resources. For example, a decision to study dyads Down syndrome living in Ireland. British Journal of Learning leads to a decision to study fewer families or a statistical Disabilities, 46(3), 146–154. https://doi.org/10.1111/bld.12231 technique requiring a large sample size leads to a decision to Choi, H. (2015). Adaptation in families of children with Down recruit only one family member. Considering all aspects of syndrome: A mixed-methods design. Journal of Korean Academy of Nursing, 45(4), 501–512. https://doi.org/10.4040/ the FMSF when planning a study can help investigators eval- jkan.2015.45.4.501 uate various options related to their study aims and design Choi, H., & Van Riper, M. (2014). Maternal perceptions of sib- and contribute to making well-reasoned decisions about their ling adaptation in Korean families of children with Down syn- priorities for advancing knowledge of family management of drome. Journal of Intellectual Disability Research, 58(10), health-related challenges. 962–977. https://doi.org/10.1111/jir.12126 Close, S., Sadler, L., & Grey, M. (2016). In the dark: Challenges Acknowledgments of caring for sons with Klinefelter syndrome. Journal of The authors wish to thank University of North Carolina at Chapel Pediatric Nursing, 31(1), 11–20. https://doi.org/10.1016/j. Hill librarian Jamie Conklin for her expert input and support. pedn.2015.05.002 Cody, S. E., Sullivan-Bolyai, S., & Reid-Ponte, P. (2018). Making Declaration of Conflicting Interests a connection: Family experiences with bedside rounds in the intensive care unit. Critical Care Nurse, 38(3), 18–26. https:// The author(s) declared no potential conflicts of interest with respect doi.org/10.4037/ccn2018128 to the research, authorship, and/or publication of this article. Conlon, K. E., Strassle, C. G., Vinh, D., & Trout, G. (2008). Family management styles and ADHD: Utility and treatment implica- Funding tions. Journal of Family Nursing, 14(2), 181–200. https://doi. The author(s) received no financial support for the research, author- org/10.1177/1074840708315673 ship, and/or publication of this article. Deatrick, J. (2017). Where is "family" in the social determinants of health? Implications fo family nursing practice, research, edu- ORCID iDs cation, and policy. Journal of Family Nursing, 23(4), 423-433. https://doi.org/10.1177/1074840717735287 Kathleen A. Knafl https://orcid.org/0000-0003-2623-2515 Deatrick, J., Barakat, L. P., Knafl, G. J., Hobbie, W., Ogle, S., Janet A. Deatrick https://orcid.org/0000-0002-6447-3259 Ginsberg, J. P., Fisher, M. J., Hardie, T., Reilly, M., Broden, E., Toth, J., SanGiacomo, N., & Knafl, K. (2018). Patterns References of family management for adolescent and young adult brain Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards tumor survivors. Journal of Family Psychology, 32(3), 321– a methodological framework. International Journal of 332. https://doi.org/10.1037/fam0000352 Social Research Methodology, 8(1), 19–32. https://doi. Deatrick, J., Hobbie, W., Ogle, S., Fisher, M. J., Barakat, L., Hardie, org/10.1080/1364557032000119616 T., Reilly, M., Li, Y., & Ginsberg, J. P. (2014). Competence in Athaseri, S., Tilokskulchai, F., Patoomwan, A., Grey, M., Knafl, caregivers of adolescent and young adult childhood brain tumor K., & Suprasongsin, C. (2008). Understanding mothers of chil- survivors. Health Psychology, 33(10), 1103–1112. https://doi. dren with type 1 diabetes: An investigation of perspective and org/10.1037/a0033756 management. Thai Journal of Nursing Research, 12(1), 55–69. Deatrick, J. A., Knafl, G. J., Knafl, K., Hardie, T. L., Bressler, S., Bandura, A. (1997). Self-efficacy: The exercise of control. W. H. Hobbie, W., Bratton, K., Dominguez, M., Guzman, C., Rees Freeman. Papinsick, A., Voisine, S., & Barakat, L. P. (2020). Mothers’ Beacham, B. L., & Deatrick, J. (2015). Children with chronic and fathers’ views of family management and health-related conditions: Perspectives on condition management. Journal quality of life for young adult survivors of childhood brain of Pediatric Nursing, 30(1), 25–35. https://doi.org/10.1016/j. tumors. Journal of Psychosocial Oncology. Advance online pedn.2014.10.011 publication. https://doi.org/10.1080/07347332.2020.1844845 Beeber, A. S., & Zimmerman, S. (2012). Adapting the Family DeVellis, R. (2003). Scale development: Theory and applications Management Style Framework for families caring for older (2nd ed). SAGE. adults with dementia. Journal of Family Nursing, 18(1), 123– Duangdech, W., Patoomwan, A., Pookboonmee, R., Orathai, P., & 145. https://doi.org/10.1177/1074840711427144 Rehm, R. S. (2017). A causal model of health status of chil- Bingham, V., & Habermann, B. (2006). The influence of spiritu- dren with cerebral palsy. Pacific Rim International Journal of ality on family management of Parkinson’s disease. Journal Nursing Research, 21(4), 291–304. Knafl et al. 103 Edwards-Beckett, J., & Cedargren, D. (1995). The sociocultural Hsiao, C. Y. (2014). Family demands, social support and family context of families with a child with myelomeningocele. Issues functioning in Taiwanese families rearing children with Down in Comprehensive Pediatric Nursing, 18(1), 27–42. https://doi. syndrome. Journal of Intellectual Disability Research, 58(6), org/10.3109/01460869509080955 549–559. https://doi.org/10.1111/jir.12052 Estrem, H. H., Pados, B. F., Park, J., Knafl, K., & Thoyre, S. M. Hsiao, C. Y., & Van Riper, M. (2011). Individual and family adap- (2017). Feeding problems in infancy and early childhood: tation in Taiwanese families living with Down syndrome. Evolutionary concept analysis. Journal of Advanced Nursing, Journal of Family Nursing, 17(2), 182–201. https://doi. 73(1), 56–70. https://doi.org/10.1111/jan.13140 org/10.1177/1074840711405205 Fleming, L., Knafl, K., Knafl, G., & Van Riper, M. (2017). Parental Im, Y. J., Cho, Y., & Kim, D. H. (2019). Family management style management of adrenal crisis in children with congenital adre- as a mediator between parenting stress and quality of life of nal hyperplasia. Journal for Specialists in Pediatric Nursing, children with epilepsy. Journal of Pediatric Nursing, 45, e73– 22(4), e12190. https://doi.org/10.1111/jspn.12190 e78. https://doi.org/10.1016/j.pedn.2018.12.007 Fleming, L., Knafl, K., & Van Riper, M. (2017). How the child’s Ireys, H. T., Chernoff, R., Stein, R. E. K., DeVet, K. A., & Silver, gender matters for families having a child with congenital adre- E. J. (2001). Outcomes of community-based family-to-family nal hyperplasia. Journal of Family Nursing, 23(4), 516–533. support: Lessons learned from a decade of randomized trials. https://doi.org/10.1177/1074840717735499 Children's Services: Social Policy, Research, and Practice, 4, Gallo, A. (1990). Family management style in juvenile diabetes: 203-216. https://doi.org/10.1207/S15326918CS0404_04 A case illustration. Journal of Pediatric Nursing, 5(1), 23–32. Johnson, N., Bree, O., Lalley, E. E., Rettler, K., Grande, P., Gani, https://doi.org/10.5555/uri:pii:088259639090049F M. O., & Ahamed, S. I. (2014). Effect of a social script iPad Gallo, A., Angst, D. B., & Knafl, K. (2009). Disclosure of application for children with autism going to imaging. Journal genetic information within families. American Journal of Pediatric Nursing, 29(6), 651–659. https://doi.org/10.1016/j. of Nursing, 109(4), 65–69. https://doi.org/10.1097/01. pedn.2014.04.007 NAJ.0000348607.31983.6e Kazak, A., Kassam-Adams, N., Schneider, S., Zelikovsky, N., Gallo, A., Angst, D. B., Knafl, K., Hadley, E., & Smith, C. (2005). Alderfer, M. A., & Rourke, M. (2006). An integrative model Parents sharing information with their children about genetic of pediatric medical traumatic stress. Journal of Pediatric conditions. Journal of Pediatric Health Care, 19(5), 267–275. Psychology, 31(4), 343–355. https://doi.org/10.1093/jpepsy/ https://doi.org/10.1016/j.pedhc.2005.05.008 jsj054 Geense, W. W., Gaal, B. V., Knoll, J. L., Maas, N. M., Kok, G., Kim, D. H., & Im, Y. J. (2015). The influence of family manage- Cornelissen, E. A. M., & Nijhuis-van der Sanden, M. W. G. ment style on psychosocial problems of childhood cancer (2018). Effect and process evaluation of e-powered parents, survivors in Korea. European Journal of Oncology Nursing, a web-based support program for parents of children with a 19(2), 107–112. https://doi.org/10.1016/j.ejon.2014.10.010 chronic kidney disease: Feasibility randomized controlled trial. Kim, I., Ekas, N. V., & Hock, R. (2016). Associations between Journal of Medical Internet Research, 20(8), e245. https://doi. child behavior problems, family management, and depres- org/10.2196/jmir.9547 sive symptoms for mothers of children with autism spectrum Gibson-Young, L., Turner-Henson, A., Gerald, L. B., Vance, D. E., disorder. Research in Autism Spectrum Disorders, 26, 80–90. & Lozano, D. (2014). The relationships among family man- https://doi.org/10.1016/j.rasd.2016.03.009 agement behaviors and asthma morbidity in maternal caregiv- Knafl, K., Breitmayer, B., Gallo, A., & Zoeller, L. (1996). Family ers of children with asthma. Journal of Family Nursing, 20(4), response to childhood chronic illness: Description of manage- 442–461. https://doi.org/10.1177/1074840714552845 ment styles. Journal of Pediatric Nursing, 11(5), 315–326. Hackworth, N. J., Matthews, J., Burke, K., Petrovic, Z., Klein, B., https://doi.org/10.1016/S0882-5963(05)80065-X Northam, E. A., Kyrios, M., Chiechomski, L., & Cameron, F. Knafl, K., Darney, B. G., Gallo, A., & Angst, D. B. (2010). Parental J. (2013). Improving mental health of adolescents with type perceptions of the outcome and meaning of normalization. 1 diabetes: Protocol for a randomized controlled trial of the. Research in Nursing and Health, 33(2), 87–98. https://doi. Nothing ventured nothing gained online adolescent and par- org/10.1002/nur.20367 enting support intervention. BMC Public Health, 13(1), Article Knafl, K., & Deatrick, J. (1990). Family management style: Concept 1185. https://doi.org/10.1186/1471-2458-13-1185 analysis and development. Journal of Pediatric Nursing, 5(1), Hickey, L., Anderson, V., Hearps, S., & Jordan, B. (2018). Family 4–14. forward: A social work clinical trial promoting family adapta- Knafl, K., & Deatrick, J. (2003). Further refinement of the Family tion following paediatric acquired brain injury. Brain Injury, Management Style Framework. Journal of Family Nursing, 32(7), 867–878. https://doi.org/10.1080/02699052.2018.1466 9(3), 232–256. https://doi.org/10.1177/1074840703255435 195 Knafl, K., Deatrick, J., Gallo, A., Dixon, J., Grey, M., Knafl, G., & Hobbie, W. L., Ogle, S., Reilly, M., Barakat, L., Lucas, M. S., O’Malley, J. (2011). Assessment of the psychometric proper- Ginsberg, J. P., Fisher, M. J., Volpe, G. M., & Deatrick, J. ties of the Family Management Measure. Journal of Pediatric A. (2010). Adolescent and young adult survivors of child- Psychology, 36(5), 494–505. https://doi.org/10.1093/jpepsy/ hood brain tumors: Life after treatment in their own words. jsp034 Cancer Nursing, 39(2), 134–143. https://doi.org/10.1097/ Knafl, K., Deatrick, J., & Havill, N. L. (2012). Continued devel- ncc.0000000000000266 opment of the Family Management Style Framework. Hopkins, A., & Gallo, A. (2012). Mothers’ perception of family Journal of Family Nursing, 18(1), 11–34. https://doi. and school life when their children have a chronic condition. org/10.1177/1074840711427294 International Journal of Clinical Pediatrics, 1(4–5), 97–102. Knafl, K., Deatrick, J., Knafl, G. J., Gallo, A. M., Grey, M., & Dixon, J. (2013). Patterns of family management of childhood https://doi.org/10.4021/ijcp54w 104 Journal of Family Nursing 27(2) chronic conditions and their relationship to child and family Mendes-Castillo, A. M. C., Bousso, R. S., & Silva, L. R. (2014). functioning. Journal of Pediatric Nursing, 28(6), 523–535. Family management for transplantation children patients with https://doi.org/10.1016/j.pedn.2013.03.006 grandparents as caregivers: A case study. Online Brazilian Koplow, S. M., Gallo, A., Knafl, K., Vincent, C., Paun, O., & Gruss, Journal of Nursing, 13(4), 667–676. V. (2015a). A case study approach to nursing home place- Misko, M. D., & Bousso, R. S. (2007). Managing cancer and its ment: Smooth and difficult cases and implications for nursing. intercurrences: The family deciding to seek emergency care for Journal of Gerontological Nursing, 41(7), 58–64. https://doi. the child. Revista Latino-Americana de Enfermagem, 15(1), org/10.3928/00989134-20150413-08 48–54. https://doi.org/10.1590/s0104-11692007000100008 Koplow, S. M., Gallo, A., Knafl, K., Vincent, C., Paun, O., & Murphy, K. M. (1990). Interactional styles of parents following the Gruss, V. (2015b). Family caregivers define and manage the birth of a high-risk infant. Journal of Pediatric Nursing, 5(1), nursing home placement process. Journal of Family Nursing, 33–41. 21(3), 469–493. https://doi.org/10.1177/1074840715571365 Muscara, F., Burke, K., McCarthy, M. C., Anderson, V. A., Hearps, Krouse, A. M. (2002). The family management of breastfeeding S. J. C., Dimovski, A., & Nicholson, J. M. (2015). Parent distress low birth weight infants. Journal of Human Lactation, 18(2), reactions following a serious illness or injury in their child: A pro- 155–165. https://doi.org/10.1177/089033440201800207 tocol paper for the take a Breath Cohort Study. BMC Psychiatry, Lerret, S. M., Weiss, M. E., Stendahl, G. L., Chapman, S., Menendez, 15(1), Article 153. https://doi.org/10.1186/s12888-015-0519-5 J., Williams, L., Nadler, M. L., Neighbors, K., Amsden, K., Obrecht, J. A., Gallo, A., & Knafl, K. A. (1992). A case illustra- Cao, Y., Nugent, M., Alonso, E. M., & Simpson, P. (2015). tion of family management style in childhood end stage renal Pediatric solid organ transplant recipients: Transition to home disease. ANNA Journal, 19(3), 255–259. and chronic illness care. Pediatric Transplantation, 19(1), Quast, L. F., Phillips, P. C., Li, Y., Kazak, A. E., Barakat, L. P., & 118–129. https://doi.org/10.1111/petr.12397 Hocking, M. C. (2018). A prospective study of family predic- Lindsey, B. (2016). Therapeutic camps and their impact on the fam- tors of health-related quality of life in pediatric brain tumor ily of children with special health care needs: A mixed method survivors. Pediatric Blood & Cancer, 65(6), e26976. https:// study. Open Journal of Nursing, 6(9), 722–740. https://doi. doi.org/10.1002/pbc.26976 org/10.4236/ojn.2016.69074 Quast, L. F., Turner, E. M., McCurdy, M. D., & Hocking, M. C. Lohan, A., Morawska, A., & Mitchell, A. (2017). Associations (2016). Health-related quality of life in parents of pediatric between parental factors and child diabetes-management- brain tumor survivors at the end of tumor-directed therapy. related behaviors. Journal of Developmental and Behavioral Journal of Psychosocial Oncology, 34(4), 274–290. https://doi. Pediatrics, 38(5), 330–338. https://doi.org/10.1097/DBP. org/10.1080/07347332.2016.1175535 0000000000000447 Raymond, K. Y., Willis, D., & Sullivan-Bolyai, S. (2017). Parents McCarthy, S. M., & Gallo, A. (1992). A case illustration of fam- caring for adult children with serious mental illness. Journal of ily management style. Journal of Pediatric Nursing, 7(6), the American Psychiatric Nurses Association, 23(2), 119–132. 395–402. https://doi.org/10.1177/1078390316685404 McCubbin, M., & McCubbin, H. (1993). Families, health & illness: Rayner, M., Muscara, F., Dimovski, A., McCarthy, M. C., Yamada, Perspectives on coping and intervention. In C. B. Danielson, B. J., Anderson, V. A., Burke, K., Walser, R., & Nicholson, Hamel-Bissell, & P. Winstead-Fry (Eds.), Families coping with J. M. (2016). Take A Breath: Study protocol for a random- illness: The Resiliency Model of Family Stress, Adjustment, ized controlled trial of an online group intervention to reduce and Adaptation (pp. 21–63). Mosby. traumatic stress in parents of children with a life-threatening Mendes, T. P., Crespo, C. A. M., & Austin, J. K. (2016). Family illness or injury. BMC Psychiatry, 16, Article 169. https://doi. cohesion and adaptation in pediatric chronic conditions: The org/10.1186/s12888-016-0861-2 missing link of the family’s condition management. Journal Rearick, E. M., Sullivan-Bolyai, S., Bova, C., & Knafl, K. of Child and Family Studies, 25(9), 2820–2831. https://doi. (2011). Parents of children newly diagnosed with type 1 org/10.1007/s10826-016-0447-0 diabetes: Experiences with social support and family man- Mendes, T. P., Crespo, C. A. M., & Austin, J. K. (2017). The psy- agement. Diabetes Educator, 37(4), 508–518. https://doi. chological costs of comparisons: Parents’ social comparison org/10.1177/0145721711412979 moderates the links between family management of epilepsy Rempel, G. R., Blythe, C., Rogers, L. G., & Ravindran, V. (2012). and children’s outcomes. Epilepsy & Behavior, 75, 42–49. The process of family management when a baby is diagnosed https://doi.org/10.1016/j.yebeh.2017.07.017 with a lethal congenital condition. Journal of Family Nursing, Mendes-Castillo, A. M. C., Bousso, R. S., dos Santos, M. R., & 18(1), 35–64. https://doi.org/10.1177/1074840711427143 Damiao, E. B. C. (2012). Family management styles: A pos- Salvador, Á., Crespo, C., & Barros, L. (2019a). Family manage- sibility of evaluation in pediatric liver transplant. Acta Paulista ment of pediatric cancer: Links with parenting satisfaction de Enfermagem, 25(6), 867–872. https://doi.org/10.1590/ and psychological distress. Family Process, 58(3), 761–777. s0103-21002012000600007 https://doi.org/10.1111/famp.12379 Mendes-Castillo, A. M. C., Bousso, R. S., Ichikawa, C. R. D., & Salvador, Á., Crespo, C., & Barros, L. (2019b). Parents’ psycho- Silva, L. R. (2014). The use of the Family Management Style logical well-being when a child has cancer: Contribution of Framework to evaluate the family management of liver trans- individual and family factors. Psycho-Oncology, 28(5), 1080– plantation in adolescence. Revista da Escola de Enfermagem 1087. https://doi.org/10.1002/pon.5057 da USP, 48(3), 430–437. https://doi.org/10.1590/s0080- Sananreangsak, S., Lapvongwatanal, P., Virutsetazin, K., 623420140000300007 Vatanasomboon, P., & Gaylord, N. (2012). Predictors of family Knafl et al. 105 management behavior for children with thalassemia. The Southeast Van Riper, M., Knafl, G., Roscigno, C., & Knafl, K. (2018). Family Asian Journal of Tropical Medicine and Public Health, 43(1), 160– management of childhood chronic conditions: Does it make a 171. difference if the child has an intellectual disability? American SanGiacomo, N., Toth, J., Hobbie, W., Broden, E., Ver Hoeve, Journal of Medical Genetics—Part A, 176(1), 82–91. https:// E., Knafl, K., Barakat, L., Ogle, S., & Deatrick, J. A. (2019). doi.org/10.1002/ajmg.a.38508 Challenges to family management for caregivers of adolescent Verchota, G., & Sawin, K. J. (2016). Testing components of a and young adult survivors of childhood brain tumors. Journal self-management theory in adolescents with type 1 diabe- of Pediatric Oncology Nursing, 36(6), 402–412. https://doi. tes mellitus. Nursing Research, 65(6), 487–495. https://doi. org/10.1177/1043454219844229 org/10.1097/NNR.0000000000000180 Sheng, N., Ma, J., Ding, W., & Zhang, Y. (2018). Family man- Weissheimer, G., Mazza, V. D. A., Lima, V. F. D., Mantovani, agement affecting transition readiness and quality of life of M. D. F., Freire, M. H. D. S., & Guimarães, P. R. B. (2018). Chinese children and young people with chronic diseases. Relationship of family management with sociodemographic Journal of Child Health Care, 22(3), 470–485. https://doi. aspects and children’s physical dependence in neurologi- org/10.1177/1367493517753712 cal disorders. Revista Latino-Americana de Enfermagem, 26, Son, H. K., Kim, D. H., Lee, H., Kim, H., Chung, K., & Kim, H. e3076. https://doi.org/10.1590/1518-8345.2494.3076 S. (2018). Family management of childhood atopic dermatitis. Wiegand, D. L. (2012). Family management after the sudden death Journal of Advanced Nursing, 74(6), 1371–1379. https://doi. of a family member. Journal of Family Nursing, 18(1), 146– org/10.1111/jan.13551 163. https://doi.org/10.1177/1074840711428451 Son, H. K., Song, H. B., & Kim, D. H. (2018). Effects of the mother- Wiegand, D. L., Deatrick, J. A., & Knafl, K. (2008). Family manage- medical staff partnership on mothers’ condition management ment styles related to withdrawal of life-sustaining therapy from ability for children with chronic allergic diseases. Child Health adults who are acutely ill or injured. Journal of Family Nursing, Nursing Research, 24(1), 101–108. https://doi.org/10.4094/ 14(1), 16–32. https://doi.org/10.1177/1074840707313338 chnr.2018.24.1.101 Williams, J. K. (1995). Parenting a daughter with precocious puberty Sullivan-Bolyai, S., Crawford, S., Johnson, K., Ramchandani, N., or Turner syndrome. Journal of Pediatric Health Care, 9(3), Quinn, D., D’Alesandro, B., Stern, K., Lipman, T., Melkus, 109–114. https://doi.org/10.1016/S0891-5245(05)80018-5 G., & Streisand, R. (2016). PREP-T1 (Preteen Re-Education Wirattanapokin, S., Manderson, L., & Markovic, M. (2013). Self- with Parents–Type 1 Diabetes) feasibility intervention results. management styles of Thai adolescents with pre-diabetes and Journal of Family Nursing, 22(4), 579–605. https://doi. type 2 diabetes. Journal of Health Research, 27(6), 345–350. org/10.1177/1074840716676589 Wollenhaupt, J., Rodgers, B., & Sawin, K. J. (2012). Family man- Swallow, V., Knafl, K., Santacroce, S., Hall, A., Smith, T., Campbell, agement of a chronic health condition: Perspectives of adoles- M., & Webb, N. J. (2012). The online parent information and cents. Journal of Family Nursing, 18(1), 65–90. https://doi. support project, meeting parents’ information and support needs org/10.1177/1074840711427545 for home-based management of childhood chronic kidney dis- Young, L. (2013). The family experience following bone marrow ease: Research protocol. Journal of Advanced Nursing, 68(9), or blood cell transplantation. Journal of Advanced Nursing, 2095–2102. https://doi.org/10.1111/j.1365-2648.2011.05908.x 69(10), 2274–2284. https://doi.org/10.1111/jan.12111 Toly, V. B., & Musil, C. M. (2015). Factors related to depressive Zhang, Y., Wei, M., Han, H. R., Zhang, Y., & Shen, N. (2013). Testing symptoms in mothers of technology-dependent children. Issues the applicability of the Family Management Style Framework in Mental Health Nursing, 36(7), 518–527. https://doi.org/10.3 to Chinese families. Western Journal of Nursing Research, 109/01612840.2015.1009662 35(7), 920–942. https://doi.org/10.1177/0193945913482051 Toly, V. B., Musil, C. M., & Carl, J. C. (2012a). Families with chil- Zhang, Y., Wei, M., Shen, N., & Zhang, Y. (2015). Identifying fac- dren who are technology dependent: Normalization and fam- tors related to family management during the coping process ily functioning. Western Journal of Nursing Research, 34(1), of families with childhood chronic conditions: A multi-site 52–71. https://doi.org/10.1177/0193945910389623 study. Journal of Pediatric Nursing, 30(1), 160–173. https:// Toly, V. B., Musil, C. M., & Carl, J. C. (2012b). A longitudi- doi.org/10.1016/j.pedn.2014.10.002 nal study of families with technology-dependent children. Zhang, Y., Wei, M., Zhang, Y., & Shen, N. (2014). Chinese family Research in Nursing and Health, 35(1), 40–54. https://doi. management of chronic childhood conditions: A cluster analy- org/10.1002/nur.21454 sis. Journal for Specialists in Pediatric Nursing, 19(1), 39–53. Van Riper, M. (2005). Genetic testing and the family. Journal https://doi.org/10.1111/jspn.12046 of Midwifery Women’s Health, 50(3), 227–233. https://doi. Zhang, Y., Wei, M., Zhang, Y., & Shen, N. P. (2013). Impact org/10.1016/j.jmwh.2005.02.008 of family management on family functioning of families Van Riper, M., Knafl, G., Barbieri-Figueiredo, M. D. C., Caples, with chronically ill children. Journal of Shanghai Jiaotong M., Choi, H., de Graaf, G., Duarte, E. D., Honda, J., Marta, University, 33, 531–537. https://doi.org/10.3969/j.issn.1674- E., Phetrasuwan, S., Alfieri, S., Angelo, M., Deoisres, W., 8115.2013.05.002 Fleming, L., Dos Santos, A. S., Rocha da Silva, M. J., Skelton, B., van der Veek, S., & Knafl, K. A. (2020). Measurement Author Biographies of family management in families of individuals with Down syndrome: A cross-cultural investigation. Journal of Kathleen A. Knafl, PhD, FAAN, is a professor, School of Nursing, Family Nursing. Advance online publication. https://doi. University of North Carolina at Chapel Hill, Chapel Hill, North org/10.1177/1074840720975167 Carolina, USA. Her current research focuses on family management 106 Journal of Family Nursing 27(2) of childhood chronic conditions, including the development of the Agatha M. Gallo, PhD, RN, FAAN, is a Professor Emerita in the Family Management Style Framework and the Family Management Department of Human Development Nursing Science at the Measure (FaMM). She is a member of editorial board of the Journal University of Illinois at Chicago, College of Nursing, Chicago, of Family Nursing and the Board of Directors of the International USA. She has focused her research on family response to childhood Family Nursing Association. Recent publications include chronic conditions, families of children with a genetic condition, “Understanding Familial Response to Parental Advanced Cancer developing and implementing a web-based reproductive health Using the Family Management Style Framework” in Journal of educational intervention for young adults with sickle cell disease or Psychosocial Oncology (2019, with E. Park & K. Miller), ”Tips for sickle cell trait, and identifying the experiences and quality of life Developing a Successful Family Research Proposal” in Journal of of recipients with sickle cell disease and their donors in allogeneic Family Nursing (2017, with M. Van Riper), and “Family Management hematologic stem cell transplantation. She currently is a co-investi- of Childhood Chronic Conditions: Does It Make a Difference If the gator on a study to develop and pilot test a web-based decision aid Child Has an Intellectual Disability?” in American Journal of to assist parental disclosure to their child(ren) about their donor- Medical Genetics Part A (2017, with G. Knafl, C. Roscigno, & M. conception origins to prepare for a large-scale efficacy trial. Recent Van Riper). publications include “The Experience of Adults With Sickle Cell Disease and Their HLA-Matched Adult Sibling Donors After Janet A. Deatrick, PhD, RN, FAAN, is Professor Emerita of Allogeneic Hematopoietic Stem Cell Transplantation” in Journal of Nursing, University of Pennsylvania in Philadelphia, Pennsylvania, Advanced Nursing (2019, with A. M. Gallo et al.), “Health-Related USA. Her research focuses on family response to childhood chronic Quality of Life and Personal Life Goals of Adults With Sickle Cell conditions, including families of young adults who survived child- Disease After Allogeneic Hematopoietic Stem Cell Transplantation” hood brain tumors. She is currently developing and implementing in Western Journal of Nursing Research (2019, with A. M. Gallo Training in Problem Solving (TIPS) for Caregivers of Young Adult et al.), and “Reproductive Health CHOICES for Young Adults Survivors of Childhood Brain Tumor Survivors, a web-based, With Sickle Cell Disease or Trait: Randomized Controlled Trial coach-assisted, psychosocial intervention for their maternal pri- Outcomes Over Two Years” in Journal of Genetic Counseling mary caregivers who are at risk. She currently is a principal investi- (2015, with A. M. Gallo et al.). gator on a study to randomize an additional 20 mothers (10 TIPS intervention; 10 Enhanced Usual Care) to TIPS and assess the facil- Beth Skelton, RN, MSN, CPNP-PC, is a PhD candidate at the itators and barriers to implementing TIPS in a Hybrid Type 1 University of North Carolina at Chapel Hill under advisors Dr. Effectiveness-Implementation Design. Recent publications include Marcia Van Riper and Dr. Kathleen Knafl. Her dissertation research “Mothers’ and Fathers’ Views of Family Management and Health- was designed to investigate care coordination needs of families of Related Quality of Life for Young Adult Survivors of Childhood children with Down and the development of a mobile health appli- Brain Tumors” in Journal of Psychosocial Oncology (2020, with G. cation to support parents’ care coordination efforts. She is a co- J. Knafl et al.), “Engaging With the Community to Promote Physical investigator on a study investigating family adaptation of families Activity in Urban Neighborhoods” in American Journal of Health of children with congenital heart disease and Down syndrome. Promotion (2019, with H. Klusaritz et al.), and “Patterns of Family Recent publications include “Measurement of Family Management Management for Adolescent and Young Adult Brain Tumor in Families of Individuals With Down Syndrome: A Cross-Cultural Survivors” in Journal of Family Psychology (2018, with L. P. Investigation” in Journal of Family Nursing (2020, with M. Van Barakat et al.). Riper et al.). http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Family Nursing SAGE http://www.deepdyve.com/lp/sage/tracing-the-use-of-the-family-management-framework-and-measure-a-4vU1AK1qim

Loading next page...

References (196)

( SonH. K.SongH. B.KimD. H. (2018). Effects of the mother-medical staff partnership on mothers’ condition management ability for children with chronic allergic diseases. Child Health Nursing Research, 24(1), 101–108. 10.4094/chnr.2018.24.1.101)
SonH. K.SongH. B.KimD. H. (2018). Effects of the mother-medical staff partnership on mothers’ condition management ability for children with chronic allergic diseases. Child Health Nursing Research, 24(1), 101–108. 10.4094/chnr.2018.24.1.101
SonH. K.SongH. B.KimD. H. (2018). Effects of the mother-medical staff partnership on mothers’ condition management ability for children with chronic allergic diseases. Child Health Nursing Research, 24(1), 101–108. 10.4094/chnr.2018.24.1.101, SonH. K.SongH. B.KimD. H. (2018). Effects of the mother-medical staff partnership on mothers’ condition management ability for children with chronic allergic diseases. Child Health Nursing Research, 24(1), 101–108. 10.4094/chnr.2018.24.1.101
M. Riper (2005)
Genetic testing and the family.
Journal of midwifery & women's health, 50 3
Ana Mendes-Castillo, R. Bousso, Maiara Santos, E. Damião (2012)
Family management styles: a possibility of evaluation in pediatric liver transplant
Acta Paulista De Enfermagem, 25
( GalloA. (1990). Family management style in juvenile diabetes: A case illustration. Journal of Pediatric Nursing, 5(1), 23–32. 10.5555/uri:pii:088259639090049F2308060)
GalloA. (1990). Family management style in juvenile diabetes: A case illustration. Journal of Pediatric Nursing, 5(1), 23–32. 10.5555/uri:pii:088259639090049F2308060
GalloA. (1990). Family management style in juvenile diabetes: A case illustration. Journal of Pediatric Nursing, 5(1), 23–32. 10.5555/uri:pii:088259639090049F2308060, GalloA. (1990). Family management style in juvenile diabetes: A case illustration. Journal of Pediatric Nursing, 5(1), 23–32. 10.5555/uri:pii:088259639090049F2308060
H. Son, Hyo-Bin Song, Dong Kim (2018)
Effects of the Mother-Medical Staff Partnership on Mothers’ Condition Management Ability for Children with Chronic Allergic Diseases
Journal of Korean Academy of Child Health Nursing, 24
W. Hobbie, S. Ogle, Maureen Reilly, L. Barakat, Em Rabelais, J. Ginsberg, M. Fisher, E. Volpe, J. Deatrick (2016)
Adolescent and Young Adult Survivors of Childhood Brain Tumors: Life After Treatment in Their Own Words
Cancer Nursing, 39
K. Knafl, B. Darney, A. Gallo, D. Angst (2010)
Parental perceptions of the outcome and meaning of normalization.
Research in nursing & health, 33 2
Louise Fleming, K. Knafl, M. Riper (2017)
How the Child’s Gender Matters for Families Having a Child With Congenital Adrenal Hyperplasia
Journal of Family Nursing, 23
( BeachamB. L.DeatrickJ. (2015). Children with chronic conditions: Perspectives on condition management. Journal of Pediatric Nursing, 30(1), 25–35. 10.1016/j.pedn.2014.10.01125458105)
BeachamB. L.DeatrickJ. (2015). Children with chronic conditions: Perspectives on condition management. Journal of Pediatric Nursing, 30(1), 25–35. 10.1016/j.pedn.2014.10.01125458105
BeachamB. L.DeatrickJ. (2015). Children with chronic conditions: Perspectives on condition management. Journal of Pediatric Nursing, 30(1), 25–35. 10.1016/j.pedn.2014.10.01125458105, BeachamB. L.DeatrickJ. (2015). Children with chronic conditions: Perspectives on condition management. Journal of Pediatric Nursing, 30(1), 25–35. 10.1016/j.pedn.2014.10.01125458105
Sharron Close, L. Sadler, M. Grey (2016)
In the Dark: Challenges of Caring for Sons with Klinefelter Syndrome.
Journal of pediatric nursing, 31 1
C. Hsiao, M. Riper (2011)
Individual and Family Adaptation in Taiwanese Families Living With Down Syndrome
Journal of Family Nursing, 17
S. Lerret, M. Weiss, G. Stendahl, Shelley Chapman, Jerome Menendez, L. Williams, M. Nadler, K. Neighbors, Katie Amsden, Yumei Cao, M. Nugent, E. Alonso, P. Simpson (2015)
Pediatric solid organ transplant recipients: Transition to home and chronic illness care
Pediatric Transplantation, 19
( ConlonK. E.StrassleC. G.VinhD.TroutG. (2008). Family management styles and ADHD: Utility and treatment implications. Journal of Family Nursing, 14(2), 181–200. 10.1177/107484070831567318391181)
ConlonK. E.StrassleC. G.VinhD.TroutG. (2008). Family management styles and ADHD: Utility and treatment implications. Journal of Family Nursing, 14(2), 181–200. 10.1177/107484070831567318391181
ConlonK. E.StrassleC. G.VinhD.TroutG. (2008). Family management styles and ADHD: Utility and treatment implications. Journal of Family Nursing, 14(2), 181–200. 10.1177/107484070831567318391181, ConlonK. E.StrassleC. G.VinhD.TroutG. (2008). Family management styles and ADHD: Utility and treatment implications. Journal of Family Nursing, 14(2), 181–200. 10.1177/107484070831567318391181
Sarah Koplow, A. Gallo, K. Knafl, C. Vincent, Olimpia Paun, V. Gruss (2015)
Family Caregivers Define and Manage the Nursing Home Placement Process
Journal of Family Nursing, 21
( TolyV. B.MusilC. M.CarlJ. C. (2012a). Families with children who are technology dependent: Normalization and family functioning. Western Journal of Nursing Research, 34(1), 52–71. 10.1177/019394591038962321148462)
TolyV. B.MusilC. M.CarlJ. C. (2012a). Families with children who are technology dependent: Normalization and family functioning. Western Journal of Nursing Research, 34(1), 52–71. 10.1177/019394591038962321148462
TolyV. B.MusilC. M.CarlJ. C. (2012a). Families with children who are technology dependent: Normalization and family functioning. Western Journal of Nursing Research, 34(1), 52–71. 10.1177/019394591038962321148462, TolyV. B.MusilC. M.CarlJ. C. (2012a). Families with children who are technology dependent: Normalization and family functioning. Western Journal of Nursing Research, 34(1), 52–71. 10.1177/019394591038962321148462
V. Toly, C. Musil, J. Carl (2012)
A longitudinal study of families with technology-dependent children.
Research in nursing & health, 35 1
A. Gallo, D. Angst, K. Knafl, E. Hadley, Carrol Smith (2005)
Parents sharing information with their children about genetic conditions.
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, 19 5
R. Bousso, M. Misko, Ana Mendes-Castillo, L. Rossato (2012)
Family Management Style Framework and Its Use With Families Who Have a Child Undergoing Palliative Care at Home
Journal of Family Nursing, 18
Sharon McCarthy, Agatha Gallo (1992)
A case illustration of family management style.
Journal of pediatric nursing, 7 6
( Edwards-BeckettJ.CedargrenD. (1995). The sociocultural context of families with a child with myelomeningocele. Issues in Comprehensive Pediatric Nursing, 18(1), 27–42. 10.3109/014608695090809558707638)
Edwards-BeckettJ.CedargrenD. (1995). The sociocultural context of families with a child with myelomeningocele. Issues in Comprehensive Pediatric Nursing, 18(1), 27–42. 10.3109/014608695090809558707638
Edwards-BeckettJ.CedargrenD. (1995). The sociocultural context of families with a child with myelomeningocele. Issues in Comprehensive Pediatric Nursing, 18(1), 27–42. 10.3109/014608695090809558707638, Edwards-BeckettJ.CedargrenD. (1995). The sociocultural context of families with a child with myelomeningocele. Issues in Comprehensive Pediatric Nursing, 18(1), 27–42. 10.3109/014608695090809558707638
J. Deatrick, L. Barakat, G. Knafl, W. Hobbie, S. Ogle, J. Ginsberg, M. Fisher, T. Hardie, Maureen Reilly, E. Broden, J. Toth, Nicole SanGiacomo, K. Knafl (2018)
Patterns of Family Management for Adolescent and Young Adult Brain Tumor Survivors
Journal of Family Psychology, 32
A. Gallo, D. Angst, K. Knafl (2009)
Disclosure of genetic information within families.
The American journal of nursing, 109 4
( ChoiH.Van RiperM. (2014). Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome. Journal of Intellectual Disability Research, 58(10), 962–977. 10.1111/jir.1212624612055)
ChoiH.Van RiperM. (2014). Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome. Journal of Intellectual Disability Research, 58(10), 962–977. 10.1111/jir.1212624612055
ChoiH.Van RiperM. (2014). Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome. Journal of Intellectual Disability Research, 58(10), 962–977. 10.1111/jir.1212624612055, ChoiH.Van RiperM. (2014). Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome. Journal of Intellectual Disability Research, 58(10), 962–977. 10.1111/jir.1212624612055
( McCarthyS. M.GalloA. (1992). A case illustration of family management style. Journal of Pediatric Nursing, 7(6), 395–402.1291675)
McCarthyS. M.GalloA. (1992). A case illustration of family management style. Journal of Pediatric Nursing, 7(6), 395–402.1291675
McCarthyS. M.GalloA. (1992). A case illustration of family management style. Journal of Pediatric Nursing, 7(6), 395–402.1291675, McCarthyS. M.GalloA. (1992). A case illustration of family management style. Journal of Pediatric Nursing, 7(6), 395–402.1291675
( HopkinsA.GalloA. (2012). Mothers’ perception of family and school life when their children have a chronic condition. International Journal of Clinical Pediatrics, 1(4–5), 97–102. 10.4021/ijcp54w)
HopkinsA.GalloA. (2012). Mothers’ perception of family and school life when their children have a chronic condition. International Journal of Clinical Pediatrics, 1(4–5), 97–102. 10.4021/ijcp54w
HopkinsA.GalloA. (2012). Mothers’ perception of family and school life when their children have a chronic condition. International Journal of Clinical Pediatrics, 1(4–5), 97–102. 10.4021/ijcp54w, HopkinsA.GalloA. (2012). Mothers’ perception of family and school life when their children have a chronic condition. International Journal of Clinical Pediatrics, 1(4–5), 97–102. 10.4021/ijcp54w
Frank Muscara, Kylie Burke, M. McCarthy, V. Anderson, S. Hearps, Simone Hearps, A. Dimovski, J. Nicholson (2015)
Parent distress reactions following a serious illness or injury in their child: a protocol paper for the take a breath cohort study
BMC Psychiatry, 15
( ZhangY.WeiM.ZhangY.ShenN. P. (2013). Impact of family management on family functioning of families with chronically ill children. Journal of Shanghai Jiaotong University, 33, 531–537. 10.3969/j.issn.1674-8115.2013.05.002)
ZhangY.WeiM.ZhangY.ShenN. P. (2013). Impact of family management on family functioning of families with chronically ill children. Journal of Shanghai Jiaotong University, 33, 531–537. 10.3969/j.issn.1674-8115.2013.05.002
ZhangY.WeiM.ZhangY.ShenN. P. (2013). Impact of family management on family functioning of families with chronically ill children. Journal of Shanghai Jiaotong University, 33, 531–537. 10.3969/j.issn.1674-8115.2013.05.002, ZhangY.WeiM.ZhangY.ShenN. P. (2013). Impact of family management on family functioning of families with chronically ill children. Journal of Shanghai Jiaotong University, 33, 531–537. 10.3969/j.issn.1674-8115.2013.05.002
( TolyV. B.MusilC. M. (2015). Factors related to depressive symptoms in mothers of technology-dependent children. Issues in Mental Health Nursing, 36(7), 518–527. 10.3109/01612840.2015.100966226309171)
TolyV. B.MusilC. M. (2015). Factors related to depressive symptoms in mothers of technology-dependent children. Issues in Mental Health Nursing, 36(7), 518–527. 10.3109/01612840.2015.100966226309171
TolyV. B.MusilC. M. (2015). Factors related to depressive symptoms in mothers of technology-dependent children. Issues in Mental Health Nursing, 36(7), 518–527. 10.3109/01612840.2015.100966226309171, TolyV. B.MusilC. M. (2015). Factors related to depressive symptoms in mothers of technology-dependent children. Issues in Mental Health Nursing, 36(7), 518–527. 10.3109/01612840.2015.100966226309171
( IreysH. T.ChernoffR.SteinR. E. K.DeVetK. A.SilverE. J. (2001). Outcomes of community-based family-to-family support: Lessons learned from a decade of randomized trials. Children’s Services: Social Policy, Research, and Practice, 4, 203-216. 10.1207/S15326918CS0404_04)
IreysH. T.ChernoffR.SteinR. E. K.DeVetK. A.SilverE. J. (2001). Outcomes of community-based family-to-family support: Lessons learned from a decade of randomized trials. Children’s Services: Social Policy, Research, and Practice, 4, 203-216. 10.1207/S15326918CS0404_04
IreysH. T.ChernoffR.SteinR. E. K.DeVetK. A.SilverE. J. (2001). Outcomes of community-based family-to-family support: Lessons learned from a decade of randomized trials. Children’s Services: Social Policy, Research, and Practice, 4, 203-216. 10.1207/S15326918CS0404_04, IreysH. T.ChernoffR.SteinR. E. K.DeVetK. A.SilverE. J. (2001). Outcomes of community-based family-to-family support: Lessons learned from a decade of randomized trials. Children’s Services: Social Policy, Research, and Practice, 4, 203-216. 10.1207/S15326918CS0404_04
G. Rempel, C. Blythe, Laura Rogers, V. Ravindran (2012)
The Process of Family Management When a Baby Is Diagnosed With a Lethal Congenital Condition
Journal of Family Nursing, 18
( BanduraA. (1997). Self-efficacy: The exercise of control. W. H. Freeman.)
BanduraA. (1997). Self-efficacy: The exercise of control. W. H. Freeman.
BanduraA. (1997). Self-efficacy: The exercise of control. W. H. Freeman., BanduraA. (1997). Self-efficacy: The exercise of control. W. H. Freeman.
( KrouseA. M. (2002). The family management of breastfeeding low birth weight infants. Journal of Human Lactation, 18(2), 155–165. 10.1177/08903344020180020712033077)
KrouseA. M. (2002). The family management of breastfeeding low birth weight infants. Journal of Human Lactation, 18(2), 155–165. 10.1177/08903344020180020712033077
KrouseA. M. (2002). The family management of breastfeeding low birth weight infants. Journal of Human Lactation, 18(2), 155–165. 10.1177/08903344020180020712033077, KrouseA. M. (2002). The family management of breastfeeding low birth weight infants. Journal of Human Lactation, 18(2), 155–165. 10.1177/08903344020180020712033077
Á. Salvador, C. Crespo, Luísa Barros (2019)
Parents' psychological well‐being when a child has cancer: Contribution of individual and family factors
Psycho‐Oncology, 28
( DeVellisR. (2003). Scale development: Theory and applications (2nd ed). SAGE.)
DeVellisR. (2003). Scale development: Theory and applications (2nd ed). SAGE.
DeVellisR. (2003). Scale development: Theory and applications (2nd ed). SAGE., DeVellisR. (2003). Scale development: Theory and applications (2nd ed). SAGE.
D. Wiegand (2012)
Family Management After the Sudden Death of a Family Member
Journal of Family Nursing, 18
( RempelG. R.BlytheC.RogersL. G.RavindranV. (2012). The process of family management when a baby is diagnosed with a lethal congenital condition. Journal of Family Nursing, 18(1), 35–64. 10.1177/107484071142714322223497)
RempelG. R.BlytheC.RogersL. G.RavindranV. (2012). The process of family management when a baby is diagnosed with a lethal congenital condition. Journal of Family Nursing, 18(1), 35–64. 10.1177/107484071142714322223497
RempelG. R.BlytheC.RogersL. G.RavindranV. (2012). The process of family management when a baby is diagnosed with a lethal congenital condition. Journal of Family Nursing, 18(1), 35–64. 10.1177/107484071142714322223497, RempelG. R.BlytheC.RogersL. G.RavindranV. (2012). The process of family management when a baby is diagnosed with a lethal congenital condition. Journal of Family Nursing, 18(1), 35–64. 10.1177/107484071142714322223497
Shawn Cody, S. Sullivan-Bolyai, P. Reid-Ponte (2018)
Making a Connection: Family Experiences With Bedside Rounds in the Intensive Care Unit
Critical Care Nurse, 38
( DeatrickJ. (2017). Where is "family" in the social determinants of health? Implications fo family nursing practice, research, education, and policy. Journal of Family Nursing, 23(4), 423-433. 10.1177/107484071773528729046117)
DeatrickJ. (2017). Where is "family" in the social determinants of health? Implications fo family nursing practice, research, education, and policy. Journal of Family Nursing, 23(4), 423-433. 10.1177/107484071773528729046117
DeatrickJ. (2017). Where is "family" in the social determinants of health? Implications fo family nursing practice, research, education, and policy. Journal of Family Nursing, 23(4), 423-433. 10.1177/107484071773528729046117, DeatrickJ. (2017). Where is "family" in the social determinants of health? Implications fo family nursing practice, research, education, and policy. Journal of Family Nursing, 23(4), 423-433. 10.1177/107484071773528729046117
( ZhangY.WeiM.ShenN.ZhangY. (2015). Identifying factors related to family management during the coping process of families with childhood chronic conditions: A multi-site study. Journal of Pediatric Nursing, 30(1), 160–173. 10.1016/j.pedn.2014.10.00225450446)
ZhangY.WeiM.ShenN.ZhangY. (2015). Identifying factors related to family management during the coping process of families with childhood chronic conditions: A multi-site study. Journal of Pediatric Nursing, 30(1), 160–173. 10.1016/j.pedn.2014.10.00225450446
ZhangY.WeiM.ShenN.ZhangY. (2015). Identifying factors related to family management during the coping process of families with childhood chronic conditions: A multi-site study. Journal of Pediatric Nursing, 30(1), 160–173. 10.1016/j.pedn.2014.10.00225450446, ZhangY.WeiM.ShenN.ZhangY. (2015). Identifying factors related to family management during the coping process of families with childhood chronic conditions: A multi-site study. Journal of Pediatric Nursing, 30(1), 160–173. 10.1016/j.pedn.2014.10.00225450446
Dong Kim, Y. Im (2015)
The influence of family management style on psychosocial problems of childhood cancer survivors in Korea.
European journal of oncology nursing : the official journal of European Oncology Nursing Society, 19 2
( Gibson-YoungL.Turner-HensonA.GeraldL. B.VanceD. E.LozanoD. (2014). The relationships among family management behaviors and asthma morbidity in maternal caregivers of children with asthma. Journal of Family Nursing, 20(4), 442–461. 10.1177/107484071455284525351584)
Gibson-YoungL.Turner-HensonA.GeraldL. B.VanceD. E.LozanoD. (2014). The relationships among family management behaviors and asthma morbidity in maternal caregivers of children with asthma. Journal of Family Nursing, 20(4), 442–461. 10.1177/107484071455284525351584
Gibson-YoungL.Turner-HensonA.GeraldL. B.VanceD. E.LozanoD. (2014). The relationships among family management behaviors and asthma morbidity in maternal caregivers of children with asthma. Journal of Family Nursing, 20(4), 442–461. 10.1177/107484071455284525351584, Gibson-YoungL.Turner-HensonA.GeraldL. B.VanceD. E.LozanoD. (2014). The relationships among family management behaviors and asthma morbidity in maternal caregivers of children with asthma. Journal of Family Nursing, 20(4), 442–461. 10.1177/107484071455284525351584
Ana Mendes-Castillo, R. Bousso, L. Silva (2014)
Family management for pediatric transplant recipients with grandparents as caregivers: a case study
Online Brazilian Journal of Nursing, 13
Lauren Quast, P. Phillips, Yimei Li, A. Kazak, L. Barakat, Matthew Hocking (2018)
A prospective study of family predictors of health‐related quality of life in pediatric brain tumor survivors
Pediatric Blood & Cancer, 65
( KnaflK.DeatrickJ.HavillN. L. (2012). Continued development of the Family Management Style Framework. Journal of Family Nursing, 18(1), 11–34. 10.1177/107484071142729422223495)
KnaflK.DeatrickJ.HavillN. L. (2012). Continued development of the Family Management Style Framework. Journal of Family Nursing, 18(1), 11–34. 10.1177/107484071142729422223495
KnaflK.DeatrickJ.HavillN. L. (2012). Continued development of the Family Management Style Framework. Journal of Family Nursing, 18(1), 11–34. 10.1177/107484071142729422223495, KnaflK.DeatrickJ.HavillN. L. (2012). Continued development of the Family Management Style Framework. Journal of Family Nursing, 18(1), 11–34. 10.1177/107484071142729422223495
Á. Salvador, C. Crespo, Luísa Barros (2018)
Family Management of Pediatric Cancer: Links with Parenting Satisfaction and Psychological Distress.
Family process
( KimD. H.ImY. J. (2015). The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. European Journal of Oncology Nursing, 19(2), 107–112. 10.1016/j.ejon.2014.10.01025466826)
KimD. H.ImY. J. (2015). The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. European Journal of Oncology Nursing, 19(2), 107–112. 10.1016/j.ejon.2014.10.01025466826
KimD. H.ImY. J. (2015). The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. European Journal of Oncology Nursing, 19(2), 107–112. 10.1016/j.ejon.2014.10.01025466826, KimD. H.ImY. J. (2015). The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. European Journal of Oncology Nursing, 19(2), 107–112. 10.1016/j.ejon.2014.10.01025466826
( BinghamV.HabermannB. (2006). The influence of spirituality on family management of Parkinson’s disease. Journal of Neuroscience Nursing, 38(6), 422–427. 10.1097/01376517-200612000-00006)
BinghamV.HabermannB. (2006). The influence of spirituality on family management of Parkinson’s disease. Journal of Neuroscience Nursing, 38(6), 422–427. 10.1097/01376517-200612000-00006
BinghamV.HabermannB. (2006). The influence of spirituality on family management of Parkinson’s disease. Journal of Neuroscience Nursing, 38(6), 422–427. 10.1097/01376517-200612000-00006, BinghamV.HabermannB. (2006). The influence of spirituality on family management of Parkinson’s disease. Journal of Neuroscience Nursing, 38(6), 422–427. 10.1097/01376517-200612000-00006
D. Wiegand, J. Deatrick, K. Knafl (2008)
Family Management Styles Related to Withdrawal of Life-Sustaining Therapy From Adults Who Are Acutely Ill or Injured
Journal of Family Nursing, 14
( Mendes-CastilloA. M. C.BoussoR. S.IchikawaC. R. D.SilvaL. R. (2014). The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence. Revista da Escola de Enfermagem da USP, 48(3), 430–437. 10.1590/s0080-623420140000300007)
Mendes-CastilloA. M. C.BoussoR. S.IchikawaC. R. D.SilvaL. R. (2014). The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence. Revista da Escola de Enfermagem da USP, 48(3), 430–437. 10.1590/s0080-623420140000300007
Mendes-CastilloA. M. C.BoussoR. S.IchikawaC. R. D.SilvaL. R. (2014). The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence. Revista da Escola de Enfermagem da USP, 48(3), 430–437. 10.1590/s0080-623420140000300007, Mendes-CastilloA. M. C.BoussoR. S.IchikawaC. R. D.SilvaL. R. (2014). The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence. Revista da Escola de Enfermagem da USP, 48(3), 430–437. 10.1590/s0080-623420140000300007
V. Toly, C. Musil, J. Carl (2012)
Families With Children Who Are Technology Dependent
Western Journal of Nursing Research, 34
( GalloA.AngstD. B.KnaflK. (2009). Disclosure of genetic information within families. American Journal of Nursing, 109(4), 65–69. 10.1097/01.NAJ.0000348607.31983.6e)
GalloA.AngstD. B.KnaflK. (2009). Disclosure of genetic information within families. American Journal of Nursing, 109(4), 65–69. 10.1097/01.NAJ.0000348607.31983.6e
GalloA.AngstD. B.KnaflK. (2009). Disclosure of genetic information within families. American Journal of Nursing, 109(4), 65–69. 10.1097/01.NAJ.0000348607.31983.6e, GalloA.AngstD. B.KnaflK. (2009). Disclosure of genetic information within families. American Journal of Nursing, 109(4), 65–69. 10.1097/01.NAJ.0000348607.31983.6e
A. Bandura (1977)
Self-Efficacy: The Exercise of Control
A. Kazak, N. Kassam-Adams, S. Schneider, N. Zelikovsky, M. Alderfer, M. Rourke (2006)
An integrative model of pediatric medical traumatic stress.
Journal of pediatric psychology, 31 4
Ellen Rearick, S. Sullivan-Bolyai, C. Bova, K. Knafl (2011)
Parents of Children Newly Diagnosed With Type 1 Diabetes: Experiences With Social Support and Family Management
The Diabetes Educator, 37
H. Estrem, B. Pados, Jinhee Park, K. Knafl, S. Thoyre (2017)
Feeding problems in infancy and early childhood: evolutionary concept analysis
Journal of Advanced Nursing, 73
( RaynerM.MuscaraF.DimovskiA.McCarthyM. C.YamadaJ.AndersonV. A.BurkeK.WalserR.NicholsonJ. M. (2016). Take A Breath: Study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life-threatening illness or injury. BMC Psychiatry, 16, Article 169. 10.1186/s12888-016-0861-2)
RaynerM.MuscaraF.DimovskiA.McCarthyM. C.YamadaJ.AndersonV. A.BurkeK.WalserR.NicholsonJ. M. (2016). Take A Breath: Study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life-threatening illness or injury. BMC Psychiatry, 16, Article 169. 10.1186/s12888-016-0861-2
RaynerM.MuscaraF.DimovskiA.McCarthyM. C.YamadaJ.AndersonV. A.BurkeK.WalserR.NicholsonJ. M. (2016). Take A Breath: Study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life-threatening illness or injury. BMC Psychiatry, 16, Article 169. 10.1186/s12888-016-0861-2, RaynerM.MuscaraF.DimovskiA.McCarthyM. C.YamadaJ.AndersonV. A.BurkeK.WalserR.NicholsonJ. M. (2016). Take A Breath: Study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life-threatening illness or injury. BMC Psychiatry, 16, Article 169. 10.1186/s12888-016-0861-2
Vicki Bingham, B. Habermann (2006)
The influence of spirituality on family management of Parkinson's disease.
The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses, 38 6
(2013)
Selfmanagement styles of Thai adolescents with pre-diabetes and type 2 diabetes
( Van RiperM.KnaflG.RoscignoC.KnaflK. (2018). Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability? American Journal of Medical Genetics—Part A, 176(1), 82–91. 10.1002/ajmg.a.3850829140588)
Van RiperM.KnaflG.RoscignoC.KnaflK. (2018). Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability? American Journal of Medical Genetics—Part A, 176(1), 82–91. 10.1002/ajmg.a.3850829140588
Van RiperM.KnaflG.RoscignoC.KnaflK. (2018). Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability? American Journal of Medical Genetics—Part A, 176(1), 82–91. 10.1002/ajmg.a.3850829140588, Van RiperM.KnaflG.RoscignoC.KnaflK. (2018). Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability? American Journal of Medical Genetics—Part A, 176(1), 82–91. 10.1002/ajmg.a.3850829140588
( BeeberA. S.ZimmermanS. (2012). Adapting the Family Management Style Framework for families caring for older adults with dementia. Journal of Family Nursing, 18(1), 123–145. 10.1177/107484071142714422223494)
BeeberA. S.ZimmermanS. (2012). Adapting the Family Management Style Framework for families caring for older adults with dementia. Journal of Family Nursing, 18(1), 123–145. 10.1177/107484071142714422223494
BeeberA. S.ZimmermanS. (2012). Adapting the Family Management Style Framework for families caring for older adults with dementia. Journal of Family Nursing, 18(1), 123–145. 10.1177/107484071142714422223494, BeeberA. S.ZimmermanS. (2012). Adapting the Family Management Style Framework for families caring for older adults with dementia. Journal of Family Nursing, 18(1), 123–145. 10.1177/107484071142714422223494
K. Knafl, J. Deatrick, N. Havill (2012)
Continued Development of the Family Management Style Framework
Journal of Family Nursing, 18
M. Mohty (2008)
[Allogeneic hematopoietic stem cell transplantation].
La Revue du praticien, 58 19
( HickeyL.AndersonV.HearpsS.JordanB. (2018). Family forward: A social work clinical trial promoting family adaptation following paediatric acquired brain injury. Brain Injury, 32(7), 867–878. 10.1080/02699052.2018.146619529693477)
HickeyL.AndersonV.HearpsS.JordanB. (2018). Family forward: A social work clinical trial promoting family adaptation following paediatric acquired brain injury. Brain Injury, 32(7), 867–878. 10.1080/02699052.2018.146619529693477
HickeyL.AndersonV.HearpsS.JordanB. (2018). Family forward: A social work clinical trial promoting family adaptation following paediatric acquired brain injury. Brain Injury, 32(7), 867–878. 10.1080/02699052.2018.146619529693477, HickeyL.AndersonV.HearpsS.JordanB. (2018). Family forward: A social work clinical trial promoting family adaptation following paediatric acquired brain injury. Brain Injury, 32(7), 867–878. 10.1080/02699052.2018.146619529693477
M. Rayner, Frank Muscara, A. Dimovski, M. McCarthy, J. Yamada, V. Anderson, Kylie Burke, R. Walser, J. Nicholson (2016)
Take A Breath: study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life threatening illness or injury
BMC Psychiatry, 16
H. Ireys, R. Chernoff, R. Stein, K. Devet, E. Silver (2001)
Outcomes of Community-Based Family-to-Family Support: Lessons Learned From a Decade of Randomized Trials
Children's Services, 4
( WilliamsJ. K. (1995). Parenting a daughter with precocious puberty or Turner syndrome. Journal of Pediatric Health Care, 9(3), 109–114. 10.1016/S0891-5245(05)80018-57769554)
WilliamsJ. K. (1995). Parenting a daughter with precocious puberty or Turner syndrome. Journal of Pediatric Health Care, 9(3), 109–114. 10.1016/S0891-5245(05)80018-57769554
WilliamsJ. K. (1995). Parenting a daughter with precocious puberty or Turner syndrome. Journal of Pediatric Health Care, 9(3), 109–114. 10.1016/S0891-5245(05)80018-57769554, WilliamsJ. K. (1995). Parenting a daughter with precocious puberty or Turner syndrome. Journal of Pediatric Health Care, 9(3), 109–114. 10.1016/S0891-5245(05)80018-57769554
( Van RiperM.KnaflG.Barbieri-FigueiredoM. D. C.CaplesM.ChoiH.de GraafG.DuarteE. D.HondaJ.MartaE.PhetrasuwanS.AlfieriS.AngeloM.DeoisresW.FlemingL.Dos SantosA. S.Rocha da SilvaM. J.SkeltonB.van der VeekS.KnaflK. A. (2020). Measurement of family management in families of individuals with Down syndrome: A cross-cultural investigation. Journal of Family Nursing. Advance online publication. 10.1177/1074840720975167)
Van RiperM.KnaflG.Barbieri-FigueiredoM. D. C.CaplesM.ChoiH.de GraafG.DuarteE. D.HondaJ.MartaE.PhetrasuwanS.AlfieriS.AngeloM.DeoisresW.FlemingL.Dos SantosA. S.Rocha da SilvaM. J.SkeltonB.van der VeekS.KnaflK. A. (2020). Measurement of family management in families of individuals with Down syndrome: A cross-cultural investigation. Journal of Family Nursing. Advance online publication. 10.1177/1074840720975167
Van RiperM.KnaflG.Barbieri-FigueiredoM. D. C.CaplesM.ChoiH.de GraafG.DuarteE. D.HondaJ.MartaE.PhetrasuwanS.AlfieriS.AngeloM.DeoisresW.FlemingL.Dos SantosA. S.Rocha da SilvaM. J.SkeltonB.van der VeekS.KnaflK. A. (2020). Measurement of family management in families of individuals with Down syndrome: A cross-cultural investigation. Journal of Family Nursing. Advance online publication. 10.1177/1074840720975167, Van RiperM.KnaflG.Barbieri-FigueiredoM. D. C.CaplesM.ChoiH.de GraafG.DuarteE. D.HondaJ.MartaE.PhetrasuwanS.AlfieriS.AngeloM.DeoisresW.FlemingL.Dos SantosA. S.Rocha da SilvaM. J.SkeltonB.van der VeekS.KnaflK. A. (2020). Measurement of family management in families of individuals with Down syndrome: A cross-cultural investigation. Journal of Family Nursing. Advance online publication. 10.1177/1074840720975167
( KnaflK.BreitmayerB.GalloA.ZoellerL. (1996). Family response to childhood chronic illness: Description of management styles. Journal of Pediatric Nursing, 11(5), 315–326. 10.1016/S0882-5963(05)80065-X8908900)
KnaflK.BreitmayerB.GalloA.ZoellerL. (1996). Family response to childhood chronic illness: Description of management styles. Journal of Pediatric Nursing, 11(5), 315–326. 10.1016/S0882-5963(05)80065-X8908900
KnaflK.BreitmayerB.GalloA.ZoellerL. (1996). Family response to childhood chronic illness: Description of management styles. Journal of Pediatric Nursing, 11(5), 315–326. 10.1016/S0882-5963(05)80065-X8908900, KnaflK.BreitmayerB.GalloA.ZoellerL. (1996). Family response to childhood chronic illness: Description of management styles. Journal of Pediatric Nursing, 11(5), 315–326. 10.1016/S0882-5963(05)80065-X8908900
( KnaflK.DeatrickJ. (1990). Family management style: Concept analysis and development. Journal of Pediatric Nursing, 5(1), 4–14.2308062)
KnaflK.DeatrickJ. (1990). Family management style: Concept analysis and development. Journal of Pediatric Nursing, 5(1), 4–14.2308062
KnaflK.DeatrickJ. (1990). Family management style: Concept analysis and development. Journal of Pediatric Nursing, 5(1), 4–14.2308062, KnaflK.DeatrickJ. (1990). Family management style: Concept analysis and development. Journal of Pediatric Nursing, 5(1), 4–14.2308062
J. Wollenhaupt, B. Rodgers, K. Sawin (2012)
Family Management of a Chronic Health Condition
Journal of Family Nursing, 18
Somsiri Athaseri, Fongcum Tilokskulchai, Autchareeya Patoomwan, M. Grey, K. Knafl, C. Suprasongsin (2008)
Understanding Mothers of Children with Type 1 Diabetes: An Investigation of Perspective and Management
Pacific Rim international journal of nursing research, 12
( AthaseriS.TilokskulchaiF.PatoomwanA.GreyM.KnaflK.SuprasongsinC. (2008). Understanding mothers of children with type 1 diabetes: An investigation of perspective and management. Thai Journal of Nursing Research, 12(1), 55–69.)
AthaseriS.TilokskulchaiF.PatoomwanA.GreyM.KnaflK.SuprasongsinC. (2008). Understanding mothers of children with type 1 diabetes: An investigation of perspective and management. Thai Journal of Nursing Research, 12(1), 55–69.
AthaseriS.TilokskulchaiF.PatoomwanA.GreyM.KnaflK.SuprasongsinC. (2008). Understanding mothers of children with type 1 diabetes: An investigation of perspective and management. Thai Journal of Nursing Research, 12(1), 55–69., AthaseriS.TilokskulchaiF.PatoomwanA.GreyM.KnaflK.SuprasongsinC. (2008). Understanding mothers of children with type 1 diabetes: An investigation of perspective and management. Thai Journal of Nursing Research, 12(1), 55–69.
Sarah Koplow, A. Gallo, K. Knafl, C. Vincent, Olimpia Paun, V. Gruss (2015)
A Case Study Approach to Nursing Home Placement: Smooth and Difficult Cases and Implications for Nursing.
Journal of gerontological nursing, 41 7
C. Danielson, B. Hamel-Bissell, P. Winstead-Fry (1993)
Families, health & illness : perspectives on coping and intervention
( ArkseyH.O’MalleyL. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. 10.1080/1364557032000119616)
ArkseyH.O’MalleyL. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. 10.1080/1364557032000119616
ArkseyH.O’MalleyL. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. 10.1080/1364557032000119616, ArkseyH.O’MalleyL. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. 10.1080/1364557032000119616
C. Hsiao (2014)
Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome.
Journal of intellectual disability research : JIDR, 58 6
Siriyupa Sananreangsak, Punyarat Lapvongwatanal, Kamonmarn Virutsetazin, Paranee Vatanasomboon, N. Gaylord (2012)
Predictors of family management behavior for children with thalassemia.
The Southeast Asian journal of tropical medicine and public health, 43 1
K. Knafl, K. Knafl, J. Deatrick, J. Deatrick (1990)
Family management style: concept analysis and development.
Journal of pediatric nursing, 5 1
Nicole SanGiacomo, J. Toth, W. Hobbie, E. Broden, Elizabeth Hoeve, K. Knafl, L. Barakat, S. Ogle, J. Deatrick (2019)
Challenges to Family Management for Caregivers of Adolescent and Young Adult Survivors of Childhood Brain Tumors
Journal of Pediatric Oncology Nursing, 36
( ShengN.MaJ.DingW.ZhangY. (2018). Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases. Journal of Child Health Care, 22(3), 470–485. 10.1177/136749351775371229361839)
ShengN.MaJ.DingW.ZhangY. (2018). Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases. Journal of Child Health Care, 22(3), 470–485. 10.1177/136749351775371229361839
ShengN.MaJ.DingW.ZhangY. (2018). Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases. Journal of Child Health Care, 22(3), 470–485. 10.1177/136749351775371229361839, ShengN.MaJ.DingW.ZhangY. (2018). Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases. Journal of Child Health Care, 22(3), 470–485. 10.1177/136749351775371229361839
( DeatrickJ. A.KnaflG. J.KnaflK.HardieT. L.BresslerS.HobbieW.BrattonK.DominguezM.GuzmanC.Rees PapinsickA.VoisineS.BarakatL. P. (2020). Mothers’ and fathers’ views of family management and health-related quality of life for young adult survivors of childhood brain tumors. Journal of Psychosocial Oncology. Advance online publication. 10.1080/07347332.2020.1844845)
DeatrickJ. A.KnaflG. J.KnaflK.HardieT. L.BresslerS.HobbieW.BrattonK.DominguezM.GuzmanC.Rees PapinsickA.VoisineS.BarakatL. P. (2020). Mothers’ and fathers’ views of family management and health-related quality of life for young adult survivors of childhood brain tumors. Journal of Psychosocial Oncology. Advance online publication. 10.1080/07347332.2020.1844845
DeatrickJ. A.KnaflG. J.KnaflK.HardieT. L.BresslerS.HobbieW.BrattonK.DominguezM.GuzmanC.Rees PapinsickA.VoisineS.BarakatL. P. (2020). Mothers’ and fathers’ views of family management and health-related quality of life for young adult survivors of childhood brain tumors. Journal of Psychosocial Oncology. Advance online publication. 10.1080/07347332.2020.1844845, DeatrickJ. A.KnaflG. J.KnaflK.HardieT. L.BresslerS.HobbieW.BrattonK.DominguezM.GuzmanC.Rees PapinsickA.VoisineS.BarakatL. P. (2020). Mothers’ and fathers’ views of family management and health-related quality of life for young adult survivors of childhood brain tumors. Journal of Psychosocial Oncology. Advance online publication. 10.1080/07347332.2020.1844845
(2017)
Associations between parental factors and child diabetes-managementrelated behaviors
( Van RiperM. (2005). Genetic testing and the family. Journal of Midwifery Women’s Health, 50(3), 227–233. 10.1016/j.jmwh.2005.02.008)
Van RiperM. (2005). Genetic testing and the family. Journal of Midwifery Women’s Health, 50(3), 227–233. 10.1016/j.jmwh.2005.02.008
Van RiperM. (2005). Genetic testing and the family. Journal of Midwifery Women’s Health, 50(3), 227–233. 10.1016/j.jmwh.2005.02.008, Van RiperM. (2005). Genetic testing and the family. Journal of Midwifery Women’s Health, 50(3), 227–233. 10.1016/j.jmwh.2005.02.008
( KnaflK.DeatrickJ.GalloA.DixonJ.GreyM.KnaflG.O’MalleyJ. (2011). Assessment of the psychometric properties of the Family Management Measure. Journal of Pediatric Psychology, 36(5), 494–505. 10.1093/jpepsy/jsp03419451173)
KnaflK.DeatrickJ.GalloA.DixonJ.GreyM.KnaflG.O’MalleyJ. (2011). Assessment of the psychometric properties of the Family Management Measure. Journal of Pediatric Psychology, 36(5), 494–505. 10.1093/jpepsy/jsp03419451173
KnaflK.DeatrickJ.GalloA.DixonJ.GreyM.KnaflG.O’MalleyJ. (2011). Assessment of the psychometric properties of the Family Management Measure. Journal of Pediatric Psychology, 36(5), 494–505. 10.1093/jpepsy/jsp03419451173, KnaflK.DeatrickJ.GalloA.DixonJ.GreyM.KnaflG.O’MalleyJ. (2011). Assessment of the psychometric properties of the Family Management Measure. Journal of Pediatric Psychology, 36(5), 494–505. 10.1093/jpepsy/jsp03419451173
( WiegandD. L. (2012). Family management after the sudden death of a family member. Journal of Family Nursing, 18(1), 146–163. 10.1177/107484071142845122223496)
WiegandD. L. (2012). Family management after the sudden death of a family member. Journal of Family Nursing, 18(1), 146–163. 10.1177/107484071142845122223496
WiegandD. L. (2012). Family management after the sudden death of a family member. Journal of Family Nursing, 18(1), 146–163. 10.1177/107484071142845122223496, WiegandD. L. (2012). Family management after the sudden death of a family member. Journal of Family Nursing, 18(1), 146–163. 10.1177/107484071142845122223496
( MurphyK. M. (1990). Interactional styles of parents following the birth of a high-risk infant. Journal of Pediatric Nursing, 5(1), 33–41.2308061)
MurphyK. M. (1990). Interactional styles of parents following the birth of a high-risk infant. Journal of Pediatric Nursing, 5(1), 33–41.2308061
MurphyK. M. (1990). Interactional styles of parents following the birth of a high-risk infant. Journal of Pediatric Nursing, 5(1), 33–41.2308061, MurphyK. M. (1990). Interactional styles of parents following the birth of a high-risk infant. Journal of Pediatric Nursing, 5(1), 33–41.2308061
( MuscaraF.BurkeK.McCarthyM. C.AndersonV. A.HearpsS. J. C.DimovskiA.NicholsonJ. M. (2015). Parent distress reactions following a serious illness or injury in their child: A protocol paper for the take a Breath Cohort Study. BMC Psychiatry, 15(1), Article 153. 10.1186/s12888-015-0519-5)
MuscaraF.BurkeK.McCarthyM. C.AndersonV. A.HearpsS. J. C.DimovskiA.NicholsonJ. M. (2015). Parent distress reactions following a serious illness or injury in their child: A protocol paper for the take a Breath Cohort Study. BMC Psychiatry, 15(1), Article 153. 10.1186/s12888-015-0519-5
MuscaraF.BurkeK.McCarthyM. C.AndersonV. A.HearpsS. J. C.DimovskiA.NicholsonJ. M. (2015). Parent distress reactions following a serious illness or injury in their child: A protocol paper for the take a Breath Cohort Study. BMC Psychiatry, 15(1), Article 153. 10.1186/s12888-015-0519-5, MuscaraF.BurkeK.McCarthyM. C.AndersonV. A.HearpsS. J. C.DimovskiA.NicholsonJ. M. (2015). Parent distress reactions following a serious illness or injury in their child: A protocol paper for the take a Breath Cohort Study. BMC Psychiatry, 15(1), Article 153. 10.1186/s12888-015-0519-5
( Sullivan-BolyaiS.CrawfordS.JohnsonK.RamchandaniN.QuinnD.D’AlesandroB.SternK.LipmanT.MelkusG.StreisandR. (2016). PREP-T1 (Preteen Re-Education with Parents–Type 1 Diabetes) feasibility intervention results. Journal of Family Nursing, 22(4), 579–605. 10.1177/107484071667658927903941)
Sullivan-BolyaiS.CrawfordS.JohnsonK.RamchandaniN.QuinnD.D’AlesandroB.SternK.LipmanT.MelkusG.StreisandR. (2016). PREP-T1 (Preteen Re-Education with Parents–Type 1 Diabetes) feasibility intervention results. Journal of Family Nursing, 22(4), 579–605. 10.1177/107484071667658927903941
Sullivan-BolyaiS.CrawfordS.JohnsonK.RamchandaniN.QuinnD.D’AlesandroB.SternK.LipmanT.MelkusG.StreisandR. (2016). PREP-T1 (Preteen Re-Education with Parents–Type 1 Diabetes) feasibility intervention results. Journal of Family Nursing, 22(4), 579–605. 10.1177/107484071667658927903941, Sullivan-BolyaiS.CrawfordS.JohnsonK.RamchandaniN.QuinnD.D’AlesandroB.SternK.LipmanT.MelkusG.StreisandR. (2016). PREP-T1 (Preteen Re-Education with Parents–Type 1 Diabetes) feasibility intervention results. Journal of Family Nursing, 22(4), 579–605. 10.1177/107484071667658927903941
( LerretS. M.WeissM. E.StendahlG. L.ChapmanS.MenendezJ.WilliamsL.NadlerM. L.NeighborsK.AmsdenK.CaoY.NugentM.AlonsoE. M.SimpsonP. (2015). Pediatric solid organ transplant recipients: Transition to home and chronic illness care. Pediatric Transplantation, 19(1), 118–129. 10.1111/petr.1239725425201)
LerretS. M.WeissM. E.StendahlG. L.ChapmanS.MenendezJ.WilliamsL.NadlerM. L.NeighborsK.AmsdenK.CaoY.NugentM.AlonsoE. M.SimpsonP. (2015). Pediatric solid organ transplant recipients: Transition to home and chronic illness care. Pediatric Transplantation, 19(1), 118–129. 10.1111/petr.1239725425201
LerretS. M.WeissM. E.StendahlG. L.ChapmanS.MenendezJ.WilliamsL.NadlerM. L.NeighborsK.AmsdenK.CaoY.NugentM.AlonsoE. M.SimpsonP. (2015). Pediatric solid organ transplant recipients: Transition to home and chronic illness care. Pediatric Transplantation, 19(1), 118–129. 10.1111/petr.1239725425201, LerretS. M.WeissM. E.StendahlG. L.ChapmanS.MenendezJ.WilliamsL.NadlerM. L.NeighborsK.AmsdenK.CaoY.NugentM.AlonsoE. M.SimpsonP. (2015). Pediatric solid organ transplant recipients: Transition to home and chronic illness care. Pediatric Transplantation, 19(1), 118–129. 10.1111/petr.1239725425201
L. Young (2013)
The family experience following bone marrow or blood cell transplantation.
Journal of advanced nursing, 69 10
Y. Im, Y. Cho, Donghee Kim (2019)
Family Management Style as a Mediator between Parenting Stress and Quality of Life of Children with Epilepsy
Journal of Pediatric Nursing, 45
( SananreangsakS.LapvongwatanalP.VirutsetazinK.VatanasomboonP.GaylordN. (2012). Predictors of family management behavior for children with thalassemia. The Southeast Asian Journal of Tropical Medicine and Public Health, 43(1), 160–171.23082567)
SananreangsakS.LapvongwatanalP.VirutsetazinK.VatanasomboonP.GaylordN. (2012). Predictors of family management behavior for children with thalassemia. The Southeast Asian Journal of Tropical Medicine and Public Health, 43(1), 160–171.23082567
SananreangsakS.LapvongwatanalP.VirutsetazinK.VatanasomboonP.GaylordN. (2012). Predictors of family management behavior for children with thalassemia. The Southeast Asian Journal of Tropical Medicine and Public Health, 43(1), 160–171.23082567, SananreangsakS.LapvongwatanalP.VirutsetazinK.VatanasomboonP.GaylordN. (2012). Predictors of family management behavior for children with thalassemia. The Southeast Asian Journal of Tropical Medicine and Public Health, 43(1), 160–171.23082567
( Mendes-CastilloA. M. C.BoussoR. S.dos SantosM. R.DamiaoE. B. C. (2012). Family management styles: A possibility of evaluation in pediatric liver transplant. Acta Paulista de Enfermagem, 25(6), 867–872. 10.1590/s0103-21002012000600007)
Mendes-CastilloA. M. C.BoussoR. S.dos SantosM. R.DamiaoE. B. C. (2012). Family management styles: A possibility of evaluation in pediatric liver transplant. Acta Paulista de Enfermagem, 25(6), 867–872. 10.1590/s0103-21002012000600007
Mendes-CastilloA. M. C.BoussoR. S.dos SantosM. R.DamiaoE. B. C. (2012). Family management styles: A possibility of evaluation in pediatric liver transplant. Acta Paulista de Enfermagem, 25(6), 867–872. 10.1590/s0103-21002012000600007, Mendes-CastilloA. M. C.BoussoR. S.dos SantosM. R.DamiaoE. B. C. (2012). Family management styles: A possibility of evaluation in pediatric liver transplant. Acta Paulista de Enfermagem, 25(6), 867–872. 10.1590/s0103-21002012000600007
J. Deatrick, H. Klusaritz, Rahshida Atkins, Ansley Bolick, Cory Bowman, Juan Lado, K. Schroeder, T. Lipman (2018)
Engaging With the Community to Promote Physical Activity in Urban Neighborhoods
American Journal of Health Promotion, 33
Wanid Duangdech, Autchareeya Patoomwan, Renu Pookboonmee, P. Orathai, R. Rehm (2017)
A Causal Model of Health Status of Children with Cerebral Palsy
Pacific Rim international journal of nursing research, 21
Shen Nan-ping (2013)
Impact of family management on family functioning of families with chronically ill children
Journal of Shanghai Jiaotong University
( GalloA.AngstD. B.KnaflK.HadleyE.SmithC. (2005). Parents sharing information with their children about genetic conditions. Journal of Pediatric Health Care, 19(5), 267–275. 10.1016/j.pedhc.2005.05.00816202834)
GalloA.AngstD. B.KnaflK.HadleyE.SmithC. (2005). Parents sharing information with their children about genetic conditions. Journal of Pediatric Health Care, 19(5), 267–275. 10.1016/j.pedhc.2005.05.00816202834
GalloA.AngstD. B.KnaflK.HadleyE.SmithC. (2005). Parents sharing information with their children about genetic conditions. Journal of Pediatric Health Care, 19(5), 267–275. 10.1016/j.pedhc.2005.05.00816202834, GalloA.AngstD. B.KnaflK.HadleyE.SmithC. (2005). Parents sharing information with their children about genetic conditions. Journal of Pediatric Health Care, 19(5), 267–275. 10.1016/j.pedhc.2005.05.00816202834
K. Knafl, B. Breitmayer, A. Gallo, L. Zoeller (1996)
Family response to childhood chronic illness: description of management styles.
Journal of pediatric nursing, 11 5
J. Williams (1995)
Parenting a daughter with precocious puberty or Turner syndrome.
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, 9 3
( WeissheimerG.MazzaV. D. A.LimaV. F. D.MantovaniM. D. F.FreireM. H. D. S.GuimarãesP. R. B. (2018). Relationship of family management with sociodemographic aspects and children’s physical dependence in neurological disorders. Revista Latino-Americana de Enfermagem, 26, e3076. 10.1590/1518-8345.2494.307630462788)
WeissheimerG.MazzaV. D. A.LimaV. F. D.MantovaniM. D. F.FreireM. H. D. S.GuimarãesP. R. B. (2018). Relationship of family management with sociodemographic aspects and children’s physical dependence in neurological disorders. Revista Latino-Americana de Enfermagem, 26, e3076. 10.1590/1518-8345.2494.307630462788
WeissheimerG.MazzaV. D. A.LimaV. F. D.MantovaniM. D. F.FreireM. H. D. S.GuimarãesP. R. B. (2018). Relationship of family management with sociodemographic aspects and children’s physical dependence in neurological disorders. Revista Latino-Americana de Enfermagem, 26, e3076. 10.1590/1518-8345.2494.307630462788, WeissheimerG.MazzaV. D. A.LimaV. F. D.MantovaniM. D. F.FreireM. H. D. S.GuimarãesP. R. B. (2018). Relationship of family management with sociodemographic aspects and children’s physical dependence in neurological disorders. Revista Latino-Americana de Enfermagem, 26, e3076. 10.1590/1518-8345.2494.307630462788
( RaymondK. Y.WillisD.Sullivan-BolyaiS. (2017). Parents caring for adult children with serious mental illness. Journal of the American Psychiatric Nurses Association, 23(2), 119–132. 10.1177/107839031668540428060601)
RaymondK. Y.WillisD.Sullivan-BolyaiS. (2017). Parents caring for adult children with serious mental illness. Journal of the American Psychiatric Nurses Association, 23(2), 119–132. 10.1177/107839031668540428060601
RaymondK. Y.WillisD.Sullivan-BolyaiS. (2017). Parents caring for adult children with serious mental illness. Journal of the American Psychiatric Nurses Association, 23(2), 119–132. 10.1177/107839031668540428060601, RaymondK. Y.WillisD.Sullivan-BolyaiS. (2017). Parents caring for adult children with serious mental illness. Journal of the American Psychiatric Nurses Association, 23(2), 119–132. 10.1177/107839031668540428060601
( TolyV. B.MusilC. M.CarlJ. C. (2012b). A longitudinal study of families with technology-dependent children. Research in Nursing and Health, 35(1), 40–54. 10.1002/nur.2145422161731)
TolyV. B.MusilC. M.CarlJ. C. (2012b). A longitudinal study of families with technology-dependent children. Research in Nursing and Health, 35(1), 40–54. 10.1002/nur.2145422161731
TolyV. B.MusilC. M.CarlJ. C. (2012b). A longitudinal study of families with technology-dependent children. Research in Nursing and Health, 35(1), 40–54. 10.1002/nur.2145422161731, TolyV. B.MusilC. M.CarlJ. C. (2012b). A longitudinal study of families with technology-dependent children. Research in Nursing and Health, 35(1), 40–54. 10.1002/nur.2145422161731
Brandi Lindsey (2016)
Therapeutic Camps and Their Impact on the Family of Children with Special Health Care Needs: A Mixed Method Study
Open Journal of Nursing, 06
( MendesT. P.CrespoC. A. M.AustinJ. K. (2017). The psychological costs of comparisons: Parents’ social comparison moderates the links between family management of epilepsy and children’s outcomes. Epilepsy & Behavior, 75, 42–49. 10.1016/j.yebeh.2017.07.01728826008)
MendesT. P.CrespoC. A. M.AustinJ. K. (2017). The psychological costs of comparisons: Parents’ social comparison moderates the links between family management of epilepsy and children’s outcomes. Epilepsy & Behavior, 75, 42–49. 10.1016/j.yebeh.2017.07.01728826008
MendesT. P.CrespoC. A. M.AustinJ. K. (2017). The psychological costs of comparisons: Parents’ social comparison moderates the links between family management of epilepsy and children’s outcomes. Epilepsy & Behavior, 75, 42–49. 10.1016/j.yebeh.2017.07.01728826008, MendesT. P.CrespoC. A. M.AustinJ. K. (2017). The psychological costs of comparisons: Parents’ social comparison moderates the links between family management of epilepsy and children’s outcomes. Epilepsy & Behavior, 75, 42–49. 10.1016/j.yebeh.2017.07.01728826008
Ying Zhang, Min Wei, Nanping Shen, Yaqing Zhang (2015)
Identifying factors related to family management during the coping process of families with childhood chronic conditions: a multi-site study.
Journal of pediatric nursing, 30 1
Maria Caples, Anne-Marie Martin, Caroline Dalton, Lynne Marsh, Eileen Savage, G. Knafl, M. Riper (2018)
Adaptation and resilience in families of individuals with down syndrome living in Ireland
British Journal of Learning Disabilities, 46
Linda Gibson-Young, A. Turner-Henson, L. Gerald, D. Vance, D. Lozano (2014)
The Relationships Among Family Management Behaviors and Asthma Morbidity in Maternal Caregivers of Children With Asthma
Journal of Family Nursing, 20
(2003)
Scale development: Theory and applications (2nd ed)
( ZhangY.WeiM.ZhangY.ShenN. (2014). Chinese family management of chronic childhood conditions: A cluster analysis. Journal for Specialists in Pediatric Nursing, 19(1), 39–53. 10.1111/jspn.1204624393227)
ZhangY.WeiM.ZhangY.ShenN. (2014). Chinese family management of chronic childhood conditions: A cluster analysis. Journal for Specialists in Pediatric Nursing, 19(1), 39–53. 10.1111/jspn.1204624393227
ZhangY.WeiM.ZhangY.ShenN. (2014). Chinese family management of chronic childhood conditions: A cluster analysis. Journal for Specialists in Pediatric Nursing, 19(1), 39–53. 10.1111/jspn.1204624393227, ZhangY.WeiM.ZhangY.ShenN. (2014). Chinese family management of chronic childhood conditions: A cluster analysis. Journal for Specialists in Pediatric Nursing, 19(1), 39–53. 10.1111/jspn.1204624393227
( BoussoR. S.MiskoM. D.Mendes-CastilloA. M.RossatoL. M. (2012). Family Management Style Framework and its use with families who have a child undergoing palliative care at home. Journal of Family Nursing, 18(1), 91–122. 10.1177/107484071142703822223493)
BoussoR. S.MiskoM. D.Mendes-CastilloA. M.RossatoL. M. (2012). Family Management Style Framework and its use with families who have a child undergoing palliative care at home. Journal of Family Nursing, 18(1), 91–122. 10.1177/107484071142703822223493
BoussoR. S.MiskoM. D.Mendes-CastilloA. M.RossatoL. M. (2012). Family Management Style Framework and its use with families who have a child undergoing palliative care at home. Journal of Family Nursing, 18(1), 91–122. 10.1177/107484071142703822223493, BoussoR. S.MiskoM. D.Mendes-CastilloA. M.RossatoL. M. (2012). Family Management Style Framework and its use with families who have a child undergoing palliative care at home. Journal of Family Nursing, 18(1), 91–122. 10.1177/107484071142703822223493
Gwen Verchota, K. Sawin (2016)
Testing Components of a Self-Management Theory in Adolescents With Type 1 Diabetes Mellitus
Nursing Research, 65
(2017)
She is a member of editorial board of the Journal of Family Nursing and the Board of Directors of the International Family Nursing Association. Recent publications include
K. Raymond, Danny Willis, S. Sullivan-Bolyai (2017)
Parents Caring For Adult Children With Serious Mental Illness
Journal of the American Psychiatric Nurses Association, 23
H. Choi, M. Riper (2014)
Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome.
Journal of intellectual disability research : JIDR, 58 10
( ImY. J.ChoY.KimD. H. (2019). Family management style as a mediator between parenting stress and quality of life of children with epilepsy. Journal of Pediatric Nursing, 45, e73–e78. 10.1016/j.pedn.2018.12.007)
ImY. J.ChoY.KimD. H. (2019). Family management style as a mediator between parenting stress and quality of life of children with epilepsy. Journal of Pediatric Nursing, 45, e73–e78. 10.1016/j.pedn.2018.12.007
ImY. J.ChoY.KimD. H. (2019). Family management style as a mediator between parenting stress and quality of life of children with epilepsy. Journal of Pediatric Nursing, 45, e73–e78. 10.1016/j.pedn.2018.12.007, ImY. J.ChoY.KimD. H. (2019). Family management style as a mediator between parenting stress and quality of life of children with epilepsy. Journal of Pediatric Nursing, 45, e73–e78. 10.1016/j.pedn.2018.12.007
( WirattanapokinS.MandersonL.MarkovicM. (2013). Self-management styles of Thai adolescents with pre-diabetes and type 2 diabetes. Journal of Health Research, 27(6), 345–350.)
WirattanapokinS.MandersonL.MarkovicM. (2013). Self-management styles of Thai adolescents with pre-diabetes and type 2 diabetes. Journal of Health Research, 27(6), 345–350.
WirattanapokinS.MandersonL.MarkovicM. (2013). Self-management styles of Thai adolescents with pre-diabetes and type 2 diabetes. Journal of Health Research, 27(6), 345–350., WirattanapokinS.MandersonL.MarkovicM. (2013). Self-management styles of Thai adolescents with pre-diabetes and type 2 diabetes. Journal of Health Research, 27(6), 345–350.
( HobbieW. L.OgleS.ReillyM.BarakatL.LucasM. S.GinsbergJ. P.FisherM. J.VolpeG. M.DeatrickJ. A. (2010). Adolescent and young adult survivors of childhood brain tumors: Life after treatment in their own words. Cancer Nursing, 39(2), 134–143. 10.1097/ncc.0000000000000266)
HobbieW. L.OgleS.ReillyM.BarakatL.LucasM. S.GinsbergJ. P.FisherM. J.VolpeG. M.DeatrickJ. A. (2010). Adolescent and young adult survivors of childhood brain tumors: Life after treatment in their own words. Cancer Nursing, 39(2), 134–143. 10.1097/ncc.0000000000000266
HobbieW. L.OgleS.ReillyM.BarakatL.LucasM. S.GinsbergJ. P.FisherM. J.VolpeG. M.DeatrickJ. A. (2010). Adolescent and young adult survivors of childhood brain tumors: Life after treatment in their own words. Cancer Nursing, 39(2), 134–143. 10.1097/ncc.0000000000000266, HobbieW. L.OgleS.ReillyM.BarakatL.LucasM. S.GinsbergJ. P.FisherM. J.VolpeG. M.DeatrickJ. A. (2010). Adolescent and young adult survivors of childhood brain tumors: Life after treatment in their own words. Cancer Nursing, 39(2), 134–143. 10.1097/ncc.0000000000000266
( ChoiH. (2015). Adaptation in families of children with Down syndrome: A mixed-methods design. Journal of Korean Academy of Nursing, 45(4), 501–512. 10.4040/jkan.2015.45.4.50126364525)
ChoiH. (2015). Adaptation in families of children with Down syndrome: A mixed-methods design. Journal of Korean Academy of Nursing, 45(4), 501–512. 10.4040/jkan.2015.45.4.50126364525
ChoiH. (2015). Adaptation in families of children with Down syndrome: A mixed-methods design. Journal of Korean Academy of Nursing, 45(4), 501–512. 10.4040/jkan.2015.45.4.50126364525, ChoiH. (2015). Adaptation in families of children with Down syndrome: A mixed-methods design. Journal of Korean Academy of Nursing, 45(4), 501–512. 10.4040/jkan.2015.45.4.50126364525
( WollenhauptJ.RodgersB.SawinK. J. (2012). Family management of a chronic health condition: Perspectives of adolescents. Journal of Family Nursing, 18(1), 65–90. 10.1177/107484071142754522184753)
WollenhauptJ.RodgersB.SawinK. J. (2012). Family management of a chronic health condition: Perspectives of adolescents. Journal of Family Nursing, 18(1), 65–90. 10.1177/107484071142754522184753
WollenhauptJ.RodgersB.SawinK. J. (2012). Family management of a chronic health condition: Perspectives of adolescents. Journal of Family Nursing, 18(1), 65–90. 10.1177/107484071142754522184753, WollenhauptJ.RodgersB.SawinK. J. (2012). Family management of a chronic health condition: Perspectives of adolescents. Journal of Family Nursing, 18(1), 65–90. 10.1177/107484071142754522184753
( FlemingL.KnaflK.KnaflG.Van RiperM. (2017). Parental management of adrenal crisis in children with congenital adrenal hyperplasia. Journal for Specialists in Pediatric Nursing, 22(4), e12190. 10.1111/jspn.12190)
FlemingL.KnaflK.KnaflG.Van RiperM. (2017). Parental management of adrenal crisis in children with congenital adrenal hyperplasia. Journal for Specialists in Pediatric Nursing, 22(4), e12190. 10.1111/jspn.12190
FlemingL.KnaflK.KnaflG.Van RiperM. (2017). Parental management of adrenal crisis in children with congenital adrenal hyperplasia. Journal for Specialists in Pediatric Nursing, 22(4), e12190. 10.1111/jspn.12190, FlemingL.KnaflK.KnaflG.Van RiperM. (2017). Parental management of adrenal crisis in children with congenital adrenal hyperplasia. Journal for Specialists in Pediatric Nursing, 22(4), e12190. 10.1111/jspn.12190
Gisele Weissheimer, Verônica Mazza, Vanessa Lima, María Mantovani, Márcia Freire, Paulo Guimarães (2018)
Relationship of family management with sociodemographic aspects and children’s physical dependence in neurological disorders *
Revista Latino-Americana de Enfermagem, 26
Norah Johnson, O. Bree, Erin Lalley, Kelly Rettler, Pam Grande, Md Gani, Sheikh Ahamed (2014)
Effect of a social script iPad application for children with autism going to imaging.
Journal of pediatric nursing, 29 6
K. Knafl, J. Deatrick, G. Knafl, A. Gallo, M. Grey, J. Dixon (2013)
Patterns of family management of childhood chronic conditions and their relationship to child and family functioning.
Journal of pediatric nursing, 28 6
Ying Zhang, Min Wei, Hae-Ra Han, Yaqing Zhang, Nanping Shen (2013)
Testing the Applicability of the Family Management Style Framework to Chinese Families
Western Journal of Nursing Research, 35
Louise Fleming, K. Knafl, G. Knafl, M. Riper (2017)
Parental management of adrenal crisis in children with congenital adrenal hyperplasia
Journal for Specialists in Pediatric Nursing, 22
A. Hopkins, A. Gallo (2012)
Mothers’ Perception of Family and School life When their Children have a Chronic Condition
International Journal of Clinical Pediatrics, 1
( RearickE. M.Sullivan-BolyaiS.BovaC.KnaflK. (2011). Parents of children newly diagnosed with type 1 diabetes: Experiences with social support and family management. Diabetes Educator, 37(4), 508–518. 10.1177/0145721711412979)
RearickE. M.Sullivan-BolyaiS.BovaC.KnaflK. (2011). Parents of children newly diagnosed with type 1 diabetes: Experiences with social support and family management. Diabetes Educator, 37(4), 508–518. 10.1177/0145721711412979
RearickE. M.Sullivan-BolyaiS.BovaC.KnaflK. (2011). Parents of children newly diagnosed with type 1 diabetes: Experiences with social support and family management. Diabetes Educator, 37(4), 508–518. 10.1177/0145721711412979, RearickE. M.Sullivan-BolyaiS.BovaC.KnaflK. (2011). Parents of children newly diagnosed with type 1 diabetes: Experiences with social support and family management. Diabetes Educator, 37(4), 508–518. 10.1177/0145721711412979
N. Hackworth, J. Matthews, Kylie Burke, Zvezdana Petrovic, B. Klein, E. Northam, M. Kyrios, Lisa Chiechomski, F. Cameron (2013)
Improving mental health of adolescents with Type 1 diabetes: protocol for a randomized controlled trial of the Nothing Ventured Nothing Gained online adolescent and parenting support intervention
BMC Public Health, 13
Irang Kim, N. Ekas, R. Hock (2016)
Associations between child behavior problems, family management, and depressive symptoms for mothers of children with autism spectrum disorder
Research in Autism Spectrum Disorders, 26
A. Krouse (2002)
The Family Management of Breastfeeding Low Birth Weight Infants
Journal of Human Lactation, 18
A. Beeber, Sheryl Zimmerman (2012)
Adapting the Family Management Style Framework for Families Caring for Older Adults With Dementia
Journal of Family Nursing, 18
( SanGiacomoN.TothJ.HobbieW.BrodenE.Ver HoeveE.KnaflK.BarakatL.OgleS.DeatrickJ. A. (2019). Challenges to family management for caregivers of adolescent and young adult survivors of childhood brain tumors. Journal of Pediatric Oncology Nursing, 36(6), 402–412. 10.1177/104345421984422931046569)
SanGiacomoN.TothJ.HobbieW.BrodenE.Ver HoeveE.KnaflK.BarakatL.OgleS.DeatrickJ. A. (2019). Challenges to family management for caregivers of adolescent and young adult survivors of childhood brain tumors. Journal of Pediatric Oncology Nursing, 36(6), 402–412. 10.1177/104345421984422931046569
SanGiacomoN.TothJ.HobbieW.BrodenE.Ver HoeveE.KnaflK.BarakatL.OgleS.DeatrickJ. A. (2019). Challenges to family management for caregivers of adolescent and young adult survivors of childhood brain tumors. Journal of Pediatric Oncology Nursing, 36(6), 402–412. 10.1177/104345421984422931046569, SanGiacomoN.TothJ.HobbieW.BrodenE.Ver HoeveE.KnaflK.BarakatL.OgleS.DeatrickJ. A. (2019). Challenges to family management for caregivers of adolescent and young adult survivors of childhood brain tumors. Journal of Pediatric Oncology Nursing, 36(6), 402–412. 10.1177/104345421984422931046569
( CloseS.SadlerL.GreyM. (2016). In the dark: Challenges of caring for sons with Klinefelter syndrome. Journal of Pediatric Nursing, 31(1), 11–20. 10.1016/j.pedn.2015.05.00226037960)
CloseS.SadlerL.GreyM. (2016). In the dark: Challenges of caring for sons with Klinefelter syndrome. Journal of Pediatric Nursing, 31(1), 11–20. 10.1016/j.pedn.2015.05.00226037960
CloseS.SadlerL.GreyM. (2016). In the dark: Challenges of caring for sons with Klinefelter syndrome. Journal of Pediatric Nursing, 31(1), 11–20. 10.1016/j.pedn.2015.05.00226037960, CloseS.SadlerL.GreyM. (2016). In the dark: Challenges of caring for sons with Klinefelter syndrome. Journal of Pediatric Nursing, 31(1), 11–20. 10.1016/j.pedn.2015.05.00226037960
( HsiaoC. Y. (2014). Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome. Journal of Intellectual Disability Research, 58(6), 549–559. 10.1111/jir.1205223682672)
HsiaoC. Y. (2014). Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome. Journal of Intellectual Disability Research, 58(6), 549–559. 10.1111/jir.1205223682672
HsiaoC. Y. (2014). Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome. Journal of Intellectual Disability Research, 58(6), 549–559. 10.1111/jir.1205223682672, HsiaoC. Y. (2014). Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome. Journal of Intellectual Disability Research, 58(6), 549–559. 10.1111/jir.1205223682672
J. Deatrick, W. Hobbie, S. Ogle, Michael Fisher, L. Barakat, T. Hardie, Maureen Reilly, Yimei Li, J. Ginsberg (2014)
Competence in caregivers of adolescent and young adult childhood brain tumor survivors.
Health psychology : official journal of the Division of Health Psychology, American Psychological Association, 33 10
( MendesT. P.CrespoC. A. M.AustinJ. K. (2016). Family cohesion and adaptation in pediatric chronic conditions: The missing link of the family’s condition management. Journal of Child and Family Studies, 25(9), 2820–2831. 10.1007/s10826-016-0447-0)
MendesT. P.CrespoC. A. M.AustinJ. K. (2016). Family cohesion and adaptation in pediatric chronic conditions: The missing link of the family’s condition management. Journal of Child and Family Studies, 25(9), 2820–2831. 10.1007/s10826-016-0447-0
MendesT. P.CrespoC. A. M.AustinJ. K. (2016). Family cohesion and adaptation in pediatric chronic conditions: The missing link of the family’s condition management. Journal of Child and Family Studies, 25(9), 2820–2831. 10.1007/s10826-016-0447-0, MendesT. P.CrespoC. A. M.AustinJ. K. (2016). Family cohesion and adaptation in pediatric chronic conditions: The missing link of the family’s condition management. Journal of Child and Family Studies, 25(9), 2820–2831. 10.1007/s10826-016-0447-0
M. Misko, Regina Bousso (2007)
Managing cancer and its intercurrences: the family deciding to seek emergency care for the child.
Revista latino-americana de enfermagem, 15 1
( CodyS. E.Sullivan-BolyaiS.Reid-PonteP. (2018). Making a connection: Family experiences with bedside rounds in the intensive care unit. Critical Care Nurse, 38(3), 18–26. 10.4037/ccn2018128)
CodyS. E.Sullivan-BolyaiS.Reid-PonteP. (2018). Making a connection: Family experiences with bedside rounds in the intensive care unit. Critical Care Nurse, 38(3), 18–26. 10.4037/ccn2018128
CodyS. E.Sullivan-BolyaiS.Reid-PonteP. (2018). Making a connection: Family experiences with bedside rounds in the intensive care unit. Critical Care Nurse, 38(3), 18–26. 10.4037/ccn2018128, CodyS. E.Sullivan-BolyaiS.Reid-PonteP. (2018). Making a connection: Family experiences with bedside rounds in the intensive care unit. Critical Care Nurse, 38(3), 18–26. 10.4037/ccn2018128
( KoplowS. M.GalloA.KnaflK.VincentC.PaunO.GrussV. (2015b). Family caregivers define and manage the nursing home placement process. Journal of Family Nursing, 21(3), 469–493. 10.1177/107484071557136525691220)
KoplowS. M.GalloA.KnaflK.VincentC.PaunO.GrussV. (2015b). Family caregivers define and manage the nursing home placement process. Journal of Family Nursing, 21(3), 469–493. 10.1177/107484071557136525691220
KoplowS. M.GalloA.KnaflK.VincentC.PaunO.GrussV. (2015b). Family caregivers define and manage the nursing home placement process. Journal of Family Nursing, 21(3), 469–493. 10.1177/107484071557136525691220, KoplowS. M.GalloA.KnaflK.VincentC.PaunO.GrussV. (2015b). Family caregivers define and manage the nursing home placement process. Journal of Family Nursing, 21(3), 469–493. 10.1177/107484071557136525691220
( KnaflK.DeatrickJ. (2003). Further refinement of the Family Management Style Framework. Journal of Family Nursing, 9(3), 232–256. 10.1177/1074840703255435)
KnaflK.DeatrickJ. (2003). Further refinement of the Family Management Style Framework. Journal of Family Nursing, 9(3), 232–256. 10.1177/1074840703255435
KnaflK.DeatrickJ. (2003). Further refinement of the Family Management Style Framework. Journal of Family Nursing, 9(3), 232–256. 10.1177/1074840703255435, KnaflK.DeatrickJ. (2003). Further refinement of the Family Management Style Framework. Journal of Family Nursing, 9(3), 232–256. 10.1177/1074840703255435
( CaplesM.MartinA. M.DaltonC.MarshL. (2018). Adaptation and resilience in families of individuals with Down syndrome living in Ireland. British Journal of Learning Disabilities, 46(3), 146–154. 10.1111/bld.12231)
CaplesM.MartinA. M.DaltonC.MarshL. (2018). Adaptation and resilience in families of individuals with Down syndrome living in Ireland. British Journal of Learning Disabilities, 46(3), 146–154. 10.1111/bld.12231
CaplesM.MartinA. M.DaltonC.MarshL. (2018). Adaptation and resilience in families of individuals with Down syndrome living in Ireland. British Journal of Learning Disabilities, 46(3), 146–154. 10.1111/bld.12231, CaplesM.MartinA. M.DaltonC.MarshL. (2018). Adaptation and resilience in families of individuals with Down syndrome living in Ireland. British Journal of Learning Disabilities, 46(3), 146–154. 10.1111/bld.12231
Teresa Mendes, C. Crespo, J. Austin (2017)
The psychological costs of comparisons: Parents' social comparison moderates the links between family management of epilepsy and children's outcomes
Epilepsy & Behavior, 75
Teresa Mendes, C. Crespo, J. Austin (2016)
Family Cohesion and Adaptation in Pediatric Chronic Conditions: The Missing Link of the Family’s Condition Management
Journal of Child and Family Studies, 25
( ZhangY.WeiM.HanH. R.ZhangY.ShenN. (2013). Testing the applicability of the Family Management Style Framework to Chinese families. Western Journal of Nursing Research, 35(7), 920–942. 10.1177/019394591348205123539321)
ZhangY.WeiM.HanH. R.ZhangY.ShenN. (2013). Testing the applicability of the Family Management Style Framework to Chinese families. Western Journal of Nursing Research, 35(7), 920–942. 10.1177/019394591348205123539321
ZhangY.WeiM.HanH. R.ZhangY.ShenN. (2013). Testing the applicability of the Family Management Style Framework to Chinese families. Western Journal of Nursing Research, 35(7), 920–942. 10.1177/019394591348205123539321, ZhangY.WeiM.HanH. R.ZhangY.ShenN. (2013). Testing the applicability of the Family Management Style Framework to Chinese families. Western Journal of Nursing Research, 35(7), 920–942. 10.1177/019394591348205123539321
M. Riper, G. Knafl, M. Barbieri-Figueiredo, M. Caples, Hyunkyung Choi, G. Graaf, E. Duarte, Junko Honda, E. Marta, Supapak Phetrasuwan, S. Alfieri, M. Angelo, W. Deoisres, Louise Fleming, Aline Santos, Maria Silva, Bethany Skelton, Shelley Veek, K. Knafl (2020)
Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation
Journal of Family Nursing, 27
Barbara Beacham, J. Deatrick (2015)
Children with chronic conditions: perspectives on condition management.
Journal of pediatric nursing, 30 1
( DeatrickJ.HobbieW.OgleS.FisherM. J.BarakatL.HardieT.ReillyM.LiY.GinsbergJ. P. (2014). Competence in caregivers of adolescent and young adult childhood brain tumor survivors. Health Psychology, 33(10), 1103–1112. 10.1037/a003375623957900)
DeatrickJ.HobbieW.OgleS.FisherM. J.BarakatL.HardieT.ReillyM.LiY.GinsbergJ. P. (2014). Competence in caregivers of adolescent and young adult childhood brain tumor survivors. Health Psychology, 33(10), 1103–1112. 10.1037/a003375623957900
DeatrickJ.HobbieW.OgleS.FisherM. J.BarakatL.HardieT.ReillyM.LiY.GinsbergJ. P. (2014). Competence in caregivers of adolescent and young adult childhood brain tumor survivors. Health Psychology, 33(10), 1103–1112. 10.1037/a003375623957900, DeatrickJ.HobbieW.OgleS.FisherM. J.BarakatL.HardieT.ReillyM.LiY.GinsbergJ. P. (2014). Competence in caregivers of adolescent and young adult childhood brain tumor survivors. Health Psychology, 33(10), 1103–1112. 10.1037/a003375623957900
J. Deatrick (2017)
Where Is “Family” in the Social Determinants of Health? Implications for Family Nursing Practice, Research, Education, and Policy
Journal of Family Nursing, 23
V. Toly, C. Musil (2015)
Factors Related to Depressive Symptoms in Mothers of Technology-Dependent Children
Issues in Mental Health Nursing, 36
( LohanA.MorawskaA.MitchellA. (2017). Associations between parental factors and child diabetes-management-related behaviors. Journal of Developmental and Behavioral Pediatrics, 38(5), 330–338. 10.1097/DBP.000000000000044728520634)
LohanA.MorawskaA.MitchellA. (2017). Associations between parental factors and child diabetes-management-related behaviors. Journal of Developmental and Behavioral Pediatrics, 38(5), 330–338. 10.1097/DBP.000000000000044728520634
LohanA.MorawskaA.MitchellA. (2017). Associations between parental factors and child diabetes-management-related behaviors. Journal of Developmental and Behavioral Pediatrics, 38(5), 330–338. 10.1097/DBP.000000000000044728520634, LohanA.MorawskaA.MitchellA. (2017). Associations between parental factors and child diabetes-management-related behaviors. Journal of Developmental and Behavioral Pediatrics, 38(5), 330–338. 10.1097/DBP.000000000000044728520634
( SalvadorÁ.CrespoC.BarrosL. (2019a). Family management of pediatric cancer: Links with parenting satisfaction and psychological distress. Family Process, 58(3), 761–777. 10.1111/famp.1237930063085)
SalvadorÁ.CrespoC.BarrosL. (2019a). Family management of pediatric cancer: Links with parenting satisfaction and psychological distress. Family Process, 58(3), 761–777. 10.1111/famp.1237930063085
SalvadorÁ.CrespoC.BarrosL. (2019a). Family management of pediatric cancer: Links with parenting satisfaction and psychological distress. Family Process, 58(3), 761–777. 10.1111/famp.1237930063085, SalvadorÁ.CrespoC.BarrosL. (2019a). Family management of pediatric cancer: Links with parenting satisfaction and psychological distress. Family Process, 58(3), 761–777. 10.1111/famp.1237930063085
( KnaflK.DarneyB. G.GalloA.AngstD. B. (2010). Parental perceptions of the outcome and meaning of normalization. Research in Nursing and Health, 33(2), 87–98. 10.1002/nur.2036720108258)
KnaflK.DarneyB. G.GalloA.AngstD. B. (2010). Parental perceptions of the outcome and meaning of normalization. Research in Nursing and Health, 33(2), 87–98. 10.1002/nur.2036720108258
KnaflK.DarneyB. G.GalloA.AngstD. B. (2010). Parental perceptions of the outcome and meaning of normalization. Research in Nursing and Health, 33(2), 87–98. 10.1002/nur.2036720108258, KnaflK.DarneyB. G.GalloA.AngstD. B. (2010). Parental perceptions of the outcome and meaning of normalization. Research in Nursing and Health, 33(2), 87–98. 10.1002/nur.2036720108258
L. Hickey, V. Anderson, S. Hearps, Brigid Jordan (2018)
Family Forward: a social work clinical trial promoting family adaptation following paediatric acquired brain injury
Brain Injury, 32
J. Deatrick, G. Knafl, K. Knafl, T. Hardie, Shannon Bressler, W. Hobbie, Kelly Bratton, Magdaline Dominguez, C. Guzman, Allison Papinsick, Allison Rees, Sarah Voisine, L. Barakat (2020)
Mothers’ and fathers’ views of family management and health-related quality of life for young adult survivors of childhood brain tumors
Journal of Psychosocial Oncology, 39
Ana Mendes-Castillo, R. Bousso, Carolliny Ichikawa, L. Silva (2014)
[The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence].
Revista da Escola de Enfermagem da U S P, 48 3
( HsiaoC. Y.Van RiperM. (2011). Individual and family adaptation in Taiwanese families living with Down syndrome. Journal of Family Nursing, 17(2), 182–201. 10.1177/107484071140520521531856)
HsiaoC. Y.Van RiperM. (2011). Individual and family adaptation in Taiwanese families living with Down syndrome. Journal of Family Nursing, 17(2), 182–201. 10.1177/107484071140520521531856
HsiaoC. Y.Van RiperM. (2011). Individual and family adaptation in Taiwanese families living with Down syndrome. Journal of Family Nursing, 17(2), 182–201. 10.1177/107484071140520521531856, HsiaoC. Y.Van RiperM. (2011). Individual and family adaptation in Taiwanese families living with Down syndrome. Journal of Family Nursing, 17(2), 182–201. 10.1177/107484071140520521531856
K. Murphy (1990)
Interactional styles of parents following the birth of a high-risk infant.
Journal of pediatric nursing, 5 1
( DeatrickJ.BarakatL. P.KnaflG. J.HobbieW.OgleS.GinsbergJ. P.FisherM. J.HardieT.ReillyM.BrodenE.TothJ.SanGiacomoN.KnaflK. (2018). Patterns of family management for adolescent and young adult brain tumor survivors. Journal of Family Psychology, 32(3), 321–332. 10.1037/fam000035229698006)
DeatrickJ.BarakatL. P.KnaflG. J.HobbieW.OgleS.GinsbergJ. P.FisherM. J.HardieT.ReillyM.BrodenE.TothJ.SanGiacomoN.KnaflK. (2018). Patterns of family management for adolescent and young adult brain tumor survivors. Journal of Family Psychology, 32(3), 321–332. 10.1037/fam000035229698006
DeatrickJ.BarakatL. P.KnaflG. J.HobbieW.OgleS.GinsbergJ. P.FisherM. J.HardieT.ReillyM.BrodenE.TothJ.SanGiacomoN.KnaflK. (2018). Patterns of family management for adolescent and young adult brain tumor survivors. Journal of Family Psychology, 32(3), 321–332. 10.1037/fam000035229698006, DeatrickJ.BarakatL. P.KnaflG. J.HobbieW.OgleS.GinsbergJ. P.FisherM. J.HardieT.ReillyM.BrodenE.TothJ.SanGiacomoN.KnaflK. (2018). Patterns of family management for adolescent and young adult brain tumor survivors. Journal of Family Psychology, 32(3), 321–332. 10.1037/fam000035229698006
J. Obrecht, A. Gallo, K. Knafl (1992)
A case illustration of family management style in childhood end stage renal disease.
ANNA journal, 19 3
V. Swallow, K. Knafl, Sheila Sanatacroce, A. Hall, T. Smith, M. Campbell, N. Webb (2012)
The Online Parent Information and Support project, meeting parents' information and support needs for home-based management of childhood chronic kidney disease: research protocol.
Journal of advanced nursing, 68 9
( JohnsonN.BreeO.LalleyE. E.RettlerK.GrandeP.GaniM. O.AhamedS. I. (2014). Effect of a social script iPad application for children with autism going to imaging. Journal of Pediatric Nursing, 29(6), 651–659. 10.1016/j.pedn.2014.04.00724836052)
JohnsonN.BreeO.LalleyE. E.RettlerK.GrandeP.GaniM. O.AhamedS. I. (2014). Effect of a social script iPad application for children with autism going to imaging. Journal of Pediatric Nursing, 29(6), 651–659. 10.1016/j.pedn.2014.04.00724836052
JohnsonN.BreeO.LalleyE. E.RettlerK.GrandeP.GaniM. O.AhamedS. I. (2014). Effect of a social script iPad application for children with autism going to imaging. Journal of Pediatric Nursing, 29(6), 651–659. 10.1016/j.pedn.2014.04.00724836052, JohnsonN.BreeO.LalleyE. E.RettlerK.GrandeP.GaniM. O.AhamedS. I. (2014). Effect of a social script iPad application for children with autism going to imaging. Journal of Pediatric Nursing, 29(6), 651–659. 10.1016/j.pedn.2014.04.00724836052
( KimI.EkasN. V.HockR. (2016). Associations between child behavior problems, family management, and depressive symptoms for mothers of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 26, 80–90. 10.1016/j.rasd.2016.03.009)
KimI.EkasN. V.HockR. (2016). Associations between child behavior problems, family management, and depressive symptoms for mothers of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 26, 80–90. 10.1016/j.rasd.2016.03.009
KimI.EkasN. V.HockR. (2016). Associations between child behavior problems, family management, and depressive symptoms for mothers of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 26, 80–90. 10.1016/j.rasd.2016.03.009, KimI.EkasN. V.HockR. (2016). Associations between child behavior problems, family management, and depressive symptoms for mothers of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 26, 80–90. 10.1016/j.rasd.2016.03.009
( VerchotaG.SawinK. J. (2016). Testing components of a self-management theory in adolescents with type 1 diabetes mellitus. Nursing Research, 65(6), 487–495. 10.1097/NNR.000000000000018027801719)
VerchotaG.SawinK. J. (2016). Testing components of a self-management theory in adolescents with type 1 diabetes mellitus. Nursing Research, 65(6), 487–495. 10.1097/NNR.000000000000018027801719
VerchotaG.SawinK. J. (2016). Testing components of a self-management theory in adolescents with type 1 diabetes mellitus. Nursing Research, 65(6), 487–495. 10.1097/NNR.000000000000018027801719, VerchotaG.SawinK. J. (2016). Testing components of a self-management theory in adolescents with type 1 diabetes mellitus. Nursing Research, 65(6), 487–495. 10.1097/NNR.000000000000018027801719
( EstremH. H.PadosB. F.ParkJ.KnaflK.ThoyreS. M. (2017). Feeding problems in infancy and early childhood: Evolutionary concept analysis. Journal of Advanced Nursing, 73(1), 56–70. 10.1111/jan.1314027601073)
EstremH. H.PadosB. F.ParkJ.KnaflK.ThoyreS. M. (2017). Feeding problems in infancy and early childhood: Evolutionary concept analysis. Journal of Advanced Nursing, 73(1), 56–70. 10.1111/jan.1314027601073
EstremH. H.PadosB. F.ParkJ.KnaflK.ThoyreS. M. (2017). Feeding problems in infancy and early childhood: Evolutionary concept analysis. Journal of Advanced Nursing, 73(1), 56–70. 10.1111/jan.1314027601073, EstremH. H.PadosB. F.ParkJ.KnaflK.ThoyreS. M. (2017). Feeding problems in infancy and early childhood: Evolutionary concept analysis. Journal of Advanced Nursing, 73(1), 56–70. 10.1111/jan.1314027601073
Hyunkyung Choi (2015)
[Adaptation in Families of Children with Down Syndrome: A Mixed-methods Design].
Journal of Korean Academy of Nursing, 45 4
Lauren Quast, E. Turner, M. McCurdy, Matthew Hocking (2016)
Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy
Journal of Psychosocial Oncology, 34
( KnaflK.DeatrickJ.KnaflG. J.GalloA. M.GreyM.DixonJ. (2013). Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. Journal of Pediatric Nursing, 28(6), 523–535. 10.1016/j.pedn.2013.03.00623602651)
KnaflK.DeatrickJ.KnaflG. J.GalloA. M.GreyM.DixonJ. (2013). Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. Journal of Pediatric Nursing, 28(6), 523–535. 10.1016/j.pedn.2013.03.00623602651
KnaflK.DeatrickJ.KnaflG. J.GalloA. M.GreyM.DixonJ. (2013). Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. Journal of Pediatric Nursing, 28(6), 523–535. 10.1016/j.pedn.2013.03.00623602651, KnaflK.DeatrickJ.KnaflG. J.GalloA. M.GreyM.DixonJ. (2013). Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. Journal of Pediatric Nursing, 28(6), 523–535. 10.1016/j.pedn.2013.03.00623602651
H. Arksey, L. O’Malley (2005)
Scoping studies: towards a methodological framework
International Journal of Social Research Methodology, 8
( FlemingL.KnaflK.Van RiperM. (2017). How the child’s gender matters for families having a child with congenital adrenal hyperplasia. Journal of Family Nursing, 23(4), 516–533. 10.1177/107484071773549929046104)
FlemingL.KnaflK.Van RiperM. (2017). How the child’s gender matters for families having a child with congenital adrenal hyperplasia. Journal of Family Nursing, 23(4), 516–533. 10.1177/107484071773549929046104
FlemingL.KnaflK.Van RiperM. (2017). How the child’s gender matters for families having a child with congenital adrenal hyperplasia. Journal of Family Nursing, 23(4), 516–533. 10.1177/107484071773549929046104, FlemingL.KnaflK.Van RiperM. (2017). How the child’s gender matters for families having a child with congenital adrenal hyperplasia. Journal of Family Nursing, 23(4), 516–533. 10.1177/107484071773549929046104
( MiskoM. D.BoussoR. S. (2007). Managing cancer and its intercurrences: The family deciding to seek emergency care for the child. Revista Latino-Americana de Enfermagem, 15(1), 48–54. 10.1590/s0104-1169200700010000817375232)
MiskoM. D.BoussoR. S. (2007). Managing cancer and its intercurrences: The family deciding to seek emergency care for the child. Revista Latino-Americana de Enfermagem, 15(1), 48–54. 10.1590/s0104-1169200700010000817375232
MiskoM. D.BoussoR. S. (2007). Managing cancer and its intercurrences: The family deciding to seek emergency care for the child. Revista Latino-Americana de Enfermagem, 15(1), 48–54. 10.1590/s0104-1169200700010000817375232, MiskoM. D.BoussoR. S. (2007). Managing cancer and its intercurrences: The family deciding to seek emergency care for the child. Revista Latino-Americana de Enfermagem, 15(1), 48–54. 10.1590/s0104-1169200700010000817375232
J. Edwards-Beckett, D. Cedargren (1995)
The sociocultural context of families with a child with myelomeningocele.
Issues in comprehensive pediatric nursing, 18 1
( KoplowS. M.GalloA.KnaflK.VincentC.PaunO.GrussV. (2015a). A case study approach to nursing home placement: Smooth and difficult cases and implications for nursing. Journal of Gerontological Nursing, 41(7), 58–64. 10.3928/00989134-20150413-0825912239)
KoplowS. M.GalloA.KnaflK.VincentC.PaunO.GrussV. (2015a). A case study approach to nursing home placement: Smooth and difficult cases and implications for nursing. Journal of Gerontological Nursing, 41(7), 58–64. 10.3928/00989134-20150413-0825912239
KoplowS. M.GalloA.KnaflK.VincentC.PaunO.GrussV. (2015a). A case study approach to nursing home placement: Smooth and difficult cases and implications for nursing. Journal of Gerontological Nursing, 41(7), 58–64. 10.3928/00989134-20150413-0825912239, KoplowS. M.GalloA.KnaflK.VincentC.PaunO.GrussV. (2015a). A case study approach to nursing home placement: Smooth and difficult cases and implications for nursing. Journal of Gerontological Nursing, 41(7), 58–64. 10.3928/00989134-20150413-0825912239
( WiegandD. L.DeatrickJ. A.KnaflK. (2008). Family management styles related to withdrawal of life-sustaining therapy from adults who are acutely ill or injured. Journal of Family Nursing, 14(1), 16–32. 10.1177/107484070731333818281641)
WiegandD. L.DeatrickJ. A.KnaflK. (2008). Family management styles related to withdrawal of life-sustaining therapy from adults who are acutely ill or injured. Journal of Family Nursing, 14(1), 16–32. 10.1177/107484070731333818281641
WiegandD. L.DeatrickJ. A.KnaflK. (2008). Family management styles related to withdrawal of life-sustaining therapy from adults who are acutely ill or injured. Journal of Family Nursing, 14(1), 16–32. 10.1177/107484070731333818281641, WiegandD. L.DeatrickJ. A.KnaflK. (2008). Family management styles related to withdrawal of life-sustaining therapy from adults who are acutely ill or injured. Journal of Family Nursing, 14(1), 16–32. 10.1177/107484070731333818281641
( McCubbinM.McCubbinH. (1993). Families, health & illness: Perspectives on coping and intervention. In DanielsonC. B.Hamel-BissellB.Winstead-FryP. (Eds.), Families coping with illness: The Resiliency Model of Family Stress, Adjustment, and Adaptation (pp. 21–63). Mosby.)
McCubbinM.McCubbinH. (1993). Families, health & illness: Perspectives on coping and intervention. In DanielsonC. B.Hamel-BissellB.Winstead-FryP. (Eds.), Families coping with illness: The Resiliency Model of Family Stress, Adjustment, and Adaptation (pp. 21–63). Mosby.
McCubbinM.McCubbinH. (1993). Families, health & illness: Perspectives on coping and intervention. In DanielsonC. B.Hamel-BissellB.Winstead-FryP. (Eds.), Families coping with illness: The Resiliency Model of Family Stress, Adjustment, and Adaptation (pp. 21–63). Mosby., McCubbinM.McCubbinH. (1993). Families, health & illness: Perspectives on coping and intervention. In DanielsonC. B.Hamel-BissellB.Winstead-FryP. (Eds.), Families coping with illness: The Resiliency Model of Family Stress, Adjustment, and Adaptation (pp. 21–63). Mosby.
( QuastL. F.TurnerE. M.McCurdyM. D.HockingM. C. (2016). Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy. Journal of Psychosocial Oncology, 34(4), 274–290. 10.1080/07347332.2016.117553527070180)
QuastL. F.TurnerE. M.McCurdyM. D.HockingM. C. (2016). Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy. Journal of Psychosocial Oncology, 34(4), 274–290. 10.1080/07347332.2016.117553527070180
QuastL. F.TurnerE. M.McCurdyM. D.HockingM. C. (2016). Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy. Journal of Psychosocial Oncology, 34(4), 274–290. 10.1080/07347332.2016.117553527070180, QuastL. F.TurnerE. M.McCurdyM. D.HockingM. C. (2016). Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy. Journal of Psychosocial Oncology, 34(4), 274–290. 10.1080/07347332.2016.117553527070180
( SalvadorÁ.CrespoC.BarrosL. (2019b). Parents’ psychological well-being when a child has cancer: Contribution of individual and family factors. Psycho-Oncology, 28(5), 1080–1087. 10.1002/pon.505730861257)
SalvadorÁ.CrespoC.BarrosL. (2019b). Parents’ psychological well-being when a child has cancer: Contribution of individual and family factors. Psycho-Oncology, 28(5), 1080–1087. 10.1002/pon.505730861257
SalvadorÁ.CrespoC.BarrosL. (2019b). Parents’ psychological well-being when a child has cancer: Contribution of individual and family factors. Psycho-Oncology, 28(5), 1080–1087. 10.1002/pon.505730861257, SalvadorÁ.CrespoC.BarrosL. (2019b). Parents’ psychological well-being when a child has cancer: Contribution of individual and family factors. Psycho-Oncology, 28(5), 1080–1087. 10.1002/pon.505730861257
( HackworthN. J.MatthewsJ.BurkeK.PetrovicZ.KleinB.NorthamE. A.KyriosM.ChiechomskiL.CameronF. J. (2013). Improving mental health of adolescents with type 1 diabetes: Protocol for a randomized controlled trial of the. Nothing ventured nothing gained online adolescent and parenting support intervention. BMC Public Health, 13(1), Article 1185. 10.1186/1471-2458-13-1185)
HackworthN. J.MatthewsJ.BurkeK.PetrovicZ.KleinB.NorthamE. A.KyriosM.ChiechomskiL.CameronF. J. (2013). Improving mental health of adolescents with type 1 diabetes: Protocol for a randomized controlled trial of the. Nothing ventured nothing gained online adolescent and parenting support intervention. BMC Public Health, 13(1), Article 1185. 10.1186/1471-2458-13-1185
HackworthN. J.MatthewsJ.BurkeK.PetrovicZ.KleinB.NorthamE. A.KyriosM.ChiechomskiL.CameronF. J. (2013). Improving mental health of adolescents with type 1 diabetes: Protocol for a randomized controlled trial of the. Nothing ventured nothing gained online adolescent and parenting support intervention. BMC Public Health, 13(1), Article 1185. 10.1186/1471-2458-13-1185, HackworthN. J.MatthewsJ.BurkeK.PetrovicZ.KleinB.NorthamE. A.KyriosM.ChiechomskiL.CameronF. J. (2013). Improving mental health of adolescents with type 1 diabetes: Protocol for a randomized controlled trial of the. Nothing ventured nothing gained online adolescent and parenting support intervention. BMC Public Health, 13(1), Article 1185. 10.1186/1471-2458-13-1185
( Mendes-CastilloA. M. C.BoussoR. S.SilvaL. R. (2014). Family management for transplantation children patients with grandparents as caregivers: A case study. Online Brazilian Journal of Nursing, 13(4), 667–676.)
Mendes-CastilloA. M. C.BoussoR. S.SilvaL. R. (2014). Family management for transplantation children patients with grandparents as caregivers: A case study. Online Brazilian Journal of Nursing, 13(4), 667–676.
Mendes-CastilloA. M. C.BoussoR. S.SilvaL. R. (2014). Family management for transplantation children patients with grandparents as caregivers: A case study. Online Brazilian Journal of Nursing, 13(4), 667–676., Mendes-CastilloA. M. C.BoussoR. S.SilvaL. R. (2014). Family management for transplantation children patients with grandparents as caregivers: A case study. Online Brazilian Journal of Nursing, 13(4), 667–676.
A. Gallo (1990)
Family management style in juvenile diabetes: a case illustration.
Journal of pediatric nursing, 5 1
( QuastL. F.PhillipsP. C.LiY.KazakA. E.BarakatL. P.HockingM. C. (2018). A prospective study of family predictors of health-related quality of life in pediatric brain tumor survivors. Pediatric Blood & Cancer, 65(6), e26976. 10.1002/pbc.26976)
QuastL. F.PhillipsP. C.LiY.KazakA. E.BarakatL. P.HockingM. C. (2018). A prospective study of family predictors of health-related quality of life in pediatric brain tumor survivors. Pediatric Blood & Cancer, 65(6), e26976. 10.1002/pbc.26976
QuastL. F.PhillipsP. C.LiY.KazakA. E.BarakatL. P.HockingM. C. (2018). A prospective study of family predictors of health-related quality of life in pediatric brain tumor survivors. Pediatric Blood & Cancer, 65(6), e26976. 10.1002/pbc.26976, QuastL. F.PhillipsP. C.LiY.KazakA. E.BarakatL. P.HockingM. C. (2018). A prospective study of family predictors of health-related quality of life in pediatric brain tumor survivors. Pediatric Blood & Cancer, 65(6), e26976. 10.1002/pbc.26976
K. Knafl, J. Deatrick, A. Gallo, J. Dixon, M. Grey, G. Knafl, J. O'Malley (2011)
Assessment of the psychometric properties of the Family Management Measure.
Journal of pediatric psychology, 36 5
Ying Zhang, Min Wei, Yaqing Zhang, Nanping Shen (2014)
Chinese family management of chronic childhood conditions: a cluster analysis.
Journal for specialists in pediatric nursing : JSPN, 19 1
( DuangdechW.PatoomwanA.PookboonmeeR.OrathaiP.RehmR. S. (2017). A causal model of health status of children with cerebral palsy. Pacific Rim International Journal of Nursing Research, 21(4), 291–304.)
DuangdechW.PatoomwanA.PookboonmeeR.OrathaiP.RehmR. S. (2017). A causal model of health status of children with cerebral palsy. Pacific Rim International Journal of Nursing Research, 21(4), 291–304.
DuangdechW.PatoomwanA.PookboonmeeR.OrathaiP.RehmR. S. (2017). A causal model of health status of children with cerebral palsy. Pacific Rim International Journal of Nursing Research, 21(4), 291–304., DuangdechW.PatoomwanA.PookboonmeeR.OrathaiP.RehmR. S. (2017). A causal model of health status of children with cerebral palsy. Pacific Rim International Journal of Nursing Research, 21(4), 291–304.
( ObrechtJ. A.GalloA.KnaflK. A. (1992). A case illustration of family management style in childhood end stage renal disease. ANNA Journal, 19(3), 255–259.1627007)
ObrechtJ. A.GalloA.KnaflK. A. (1992). A case illustration of family management style in childhood end stage renal disease. ANNA Journal, 19(3), 255–259.1627007
ObrechtJ. A.GalloA.KnaflK. A. (1992). A case illustration of family management style in childhood end stage renal disease. ANNA Journal, 19(3), 255–259.1627007, ObrechtJ. A.GalloA.KnaflK. A. (1992). A case illustration of family management style in childhood end stage renal disease. ANNA Journal, 19(3), 255–259.1627007
( SwallowV.KnaflK.SantacroceS.HallA.SmithT.CampbellM.WebbN. J. (2012). The online parent information and support project, meeting parents’ information and support needs for home-based management of childhood chronic kidney disease: Research protocol. Journal of Advanced Nursing, 68(9), 2095–2102. 10.1111/j.1365-2648.2011.05908.x22224560)
SwallowV.KnaflK.SantacroceS.HallA.SmithT.CampbellM.WebbN. J. (2012). The online parent information and support project, meeting parents’ information and support needs for home-based management of childhood chronic kidney disease: Research protocol. Journal of Advanced Nursing, 68(9), 2095–2102. 10.1111/j.1365-2648.2011.05908.x22224560
SwallowV.KnaflK.SantacroceS.HallA.SmithT.CampbellM.WebbN. J. (2012). The online parent information and support project, meeting parents’ information and support needs for home-based management of childhood chronic kidney disease: Research protocol. Journal of Advanced Nursing, 68(9), 2095–2102. 10.1111/j.1365-2648.2011.05908.x22224560, SwallowV.KnaflK.SantacroceS.HallA.SmithT.CampbellM.WebbN. J. (2012). The online parent information and support project, meeting parents’ information and support needs for home-based management of childhood chronic kidney disease: Research protocol. Journal of Advanced Nursing, 68(9), 2095–2102. 10.1111/j.1365-2648.2011.05908.x22224560
( GeenseW. W.GaalB. V.KnollJ. L.MaasN. M.KokG.CornelissenE. A. M.Nijhuis-van der SandenM. W. G. (2018). Effect and process evaluation of e-powered parents, a web-based support program for parents of children with a chronic kidney disease: Feasibility randomized controlled trial. Journal of Medical Internet Research, 20(8), e245. 10.2196/jmir.954730068502)
GeenseW. W.GaalB. V.KnollJ. L.MaasN. M.KokG.CornelissenE. A. M.Nijhuis-van der SandenM. W. G. (2018). Effect and process evaluation of e-powered parents, a web-based support program for parents of children with a chronic kidney disease: Feasibility randomized controlled trial. Journal of Medical Internet Research, 20(8), e245. 10.2196/jmir.954730068502
GeenseW. W.GaalB. V.KnollJ. L.MaasN. M.KokG.CornelissenE. A. M.Nijhuis-van der SandenM. W. G. (2018). Effect and process evaluation of e-powered parents, a web-based support program for parents of children with a chronic kidney disease: Feasibility randomized controlled trial. Journal of Medical Internet Research, 20(8), e245. 10.2196/jmir.954730068502, GeenseW. W.GaalB. V.KnollJ. L.MaasN. M.KokG.CornelissenE. A. M.Nijhuis-van der SandenM. W. G. (2018). Effect and process evaluation of e-powered parents, a web-based support program for parents of children with a chronic kidney disease: Feasibility randomized controlled trial. Journal of Medical Internet Research, 20(8), e245. 10.2196/jmir.954730068502
M. Riper, G. Knafl, Cecelia Roscigno, K. Knafl (2018)
Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability?
American Journal of Medical Genetics Part A, 176
Nan Sheng, Jiali Ma, Wenwen Ding, Ying Zhang (2018)
Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases
Journal of Child Health Care, 22
( SonH. K.KimD. H.LeeH.KimH.ChungK.KimH. S. (2018). Family management of childhood atopic dermatitis. Journal of Advanced Nursing, 74(6), 1371–1379. 10.1111/jan.1355129468720)
SonH. K.KimD. H.LeeH.KimH.ChungK.KimH. S. (2018). Family management of childhood atopic dermatitis. Journal of Advanced Nursing, 74(6), 1371–1379. 10.1111/jan.1355129468720
SonH. K.KimD. H.LeeH.KimH.ChungK.KimH. S. (2018). Family management of childhood atopic dermatitis. Journal of Advanced Nursing, 74(6), 1371–1379. 10.1111/jan.1355129468720, SonH. K.KimD. H.LeeH.KimH.ChungK.KimH. S. (2018). Family management of childhood atopic dermatitis. Journal of Advanced Nursing, 74(6), 1371–1379. 10.1111/jan.1355129468720
( LindseyB. (2016). Therapeutic camps and their impact on the family of children with special health care needs: A mixed method study. Open Journal of Nursing, 6(9), 722–740. 10.4236/ojn.2016.69074)
LindseyB. (2016). Therapeutic camps and their impact on the family of children with special health care needs: A mixed method study. Open Journal of Nursing, 6(9), 722–740. 10.4236/ojn.2016.69074
LindseyB. (2016). Therapeutic camps and their impact on the family of children with special health care needs: A mixed method study. Open Journal of Nursing, 6(9), 722–740. 10.4236/ojn.2016.69074, LindseyB. (2016). Therapeutic camps and their impact on the family of children with special health care needs: A mixed method study. Open Journal of Nursing, 6(9), 722–740. 10.4236/ojn.2016.69074
( KazakA.Kassam-AdamsN.SchneiderS.ZelikovskyN.AlderferM. A.RourkeM. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4), 343–355. 10.1093/jpepsy/jsj05416093522)
KazakA.Kassam-AdamsN.SchneiderS.ZelikovskyN.AlderferM. A.RourkeM. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4), 343–355. 10.1093/jpepsy/jsj05416093522
KazakA.Kassam-AdamsN.SchneiderS.ZelikovskyN.AlderferM. A.RourkeM. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4), 343–355. 10.1093/jpepsy/jsj05416093522, KazakA.Kassam-AdamsN.SchneiderS.ZelikovskyN.AlderferM. A.RourkeM. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4), 343–355. 10.1093/jpepsy/jsj05416093522
( YoungL. (2013). The family experience following bone marrow or blood cell transplantation. Journal of Advanced Nursing, 69(10), 2274–2284. 10.1111/jan.1211123521620)
YoungL. (2013). The family experience following bone marrow or blood cell transplantation. Journal of Advanced Nursing, 69(10), 2274–2284. 10.1111/jan.1211123521620
YoungL. (2013). The family experience following bone marrow or blood cell transplantation. Journal of Advanced Nursing, 69(10), 2274–2284. 10.1111/jan.1211123521620, YoungL. (2013). The family experience following bone marrow or blood cell transplantation. Journal of Advanced Nursing, 69(10), 2274–2284. 10.1111/jan.1211123521620
H. Son, Dong Kim, Hyejung Lee, Heejung Kim, Kyongmee Chung, H. Kim (2018)
Family management of childhood atopic dermatitis
Journal of Advanced Nursing, 74
K. Knafl, J. Deatrick (2003)
Further Refinement of the Family Management Style Framework
Journal of Family Nursing, 9
Wytske Geense, B. Gaal, Jaqueline Knoll, N. Maas, G. Kok, E. Cornelissen, M. Sanden (2018)
Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial
Journal of Medical Internet Research, 20
S. Sullivan-Bolyai, S. Crawford, Kimberly Johnson, Neesha Ramchandani, Diane Quinn, Bianca D’Alesandro, Kailyn Stern, T. Lipman, G. Melkus, R. Streisand (2016)
PREP-T1 (Preteen Re-Education With Parents–Type 1 Diabetes) Feasibility Intervention Results
Journal of Family Nursing, 22

Publisher: SAGE
Copyright: Copyright © 2022 by SAGE Publications
ISSN: 1074-8407
eISSN: 1552-549X
DOI: 10.1177/1074840721994331
Publisher site: See Article on Publisher Site

Abstract

This article reports the results of a scoping review of research applications of the Family Management Style Framework (FMSF) and the Family Management Measure (FaMM). We identified 32 studies based on the FMSF and 41 studies in which the FaMM was used, 17 of which were based on the FMSF. Both the framework and measure have been used by investigators in multiple countries, with most applications of the FaMM outside the United States. Although the FMSF and FaMM were originally developed for use with families in which there was a child with a chronic physical condition, both have been applied to a broader range of health conditions and to studies focusing on families with an adult member facing a health challenge. Based on our findings, we make recommendations for how researchers can more fully address all aspects of the FMSF. Keywords family research, family management, scoping review Published three decades ago (Knafl & Deatrick, 1990), the 2010 Janice Bell, the editor of the Journal of Family Nursing Family Management Style Framework (FMSF) conceptual- (JFN), invited the submission of manuscripts for a special ized how families with a child with a chronic condition issue addressing “New Directions for the Family Management incorporated condition management into daily family life. Style Framework” that extended the framework to condi- The FMSF described key elements of family management tions and/or sociocultural contexts not included in the initial related to how family members defined their situation, their conceptualization. Published in May 2012, the special issue management behaviors, and the consequences of condition reported studies focusing on family management of serious management for family life. Recognizing that these elements and life-threatening conditions in both children (Bousso might differ across family members, we also pointed to the et al., 2012; Rempel et al., 2012) and adults (Beeber & need to explicate further the elements of family management Zimmerman, 2012; Wiegand, 2012), studies completed out- and identify overarching family management patterns. side North America (Bousso et al., 2012), and a study of ado- Research aimed at further developing the framework and lescents’ perspectives of family management of chronic identifying patterns of family management was first pub- conditions (Wollenhaupt et al., 2012). lished in 1996 by Knafl and colleagues. In the absence of a measure of family management, early Building on research on family response to childhood studies applying the FMSF were largely qualitative. We rec- conditions, we continued to refine the framework, publishing ognized that to examine the association between family two updated versions (Knafl & Deatrick, 2003; Knafl et al., 2012). Based on research evidence, the updated versions of The University of North Carolina at Chapel Hill, USA the FMSF added family and family member functioning as University of Pennsylvania, Philadelphia, USA outcomes of family management. The most recent version of University of Illinois at Chicago, USA the framework is displayed in Figure 1, which also highlights Corresponding Author: the changes made as the framework was developed. These Kathleen A. Knafl, Professor, School of Nursing, The University of North initial conceptualizations of family management were Carolina at Chapel Hill, Carrington Hall #7640, Chapel Hill, NC 27599, grounded in studies of predominantly North American fami- USA. lies in which a child had a chronic physical condition. In Email: kknafl@email.unc.edu 88 Journal of Family Nursing 27(2) Figure 1. Family Management Style Framework. Major Components—Definition of the Situation (child identity, view of condition, management mindset, parental mutuality); Management Behaviors (parenting philosophy, management approach); Perceived Consequences (family focus, future expectations). management and family and family member functioning, a Arksey and O’Malley (2005), we identified and screened measure of family management was needed. Funding from research reports for inclusion in the sample, extracted the the National Institute of Nursing Research supported the information from the reports needed to address the purpose work to develop a family management measure. A question- of the review, and collated and summarized the results. With naire was created with items based on the FMSF; the mea- support from a research librarian based at the first author’s sure’s psychometric properties were assessed from a study of university, we identified articles citing one or more versions more than 500 parents with children with varied non-life- of the FMSF and/or the FaMM published through June 30, threatening chronic physical conditions. Publication of the 2019. Articles were identified through citation searches of Family Management Measure (FaMM) included its method- the Scopus, Web of Science, and Google Scholar databases. ological development and provided evidence of its reliability Following identification of all articles citing the FMSF and/ and validity (Knafl et al., 2011). The measure comprised six or the FaMM, the first author reviewed articles to differenti- separately scored scales (Child Daily Life, Condition ate research from nonresearch applications of the FMSF and Management Ability, Condition Management Effort, Family FaMM. Research applications were defined as those in which Life Difficulty, Parental Mutuality, and View of Family the FMSF provided the conceptual underpinnings of a Impact) with a total of 53 Likert-type items. Researchers research study or secondary analysis or the FaMM was used have the option of using all or a subset of the scales. There is in the study. In some articles, the framework or measure was no summary score because each scale measures a different cited in a background or discussion section but was not aspect of family management. The instructions to the FaMM applied in the research being reported. Other nonresearch define family as “those living in your household that you applications included citations in a review article or publica- think of as family.” The publication of the FaMM set the tions focusing on theory or methods. Other than tallying the stage for subsequent quantitative studies, including investi- number of such citations, these reports were excluded from gations directed to examining the relationship between fam- further analysis. The co-authors reviewed the research versus ily management and child and family outcomes, as well as nonresearch categorization, with any disagreements resolved identification of patterns of family management. through discussion to reach consensus. Although we were aware of ongoing applications of the The following information was extracted from each study: FMSF and FaMM, we had not systematically tracked the country where data were collected, study aims, sample (num- extent of their use. We recognized that such tracking would ber of families; family members participating), condition(s) be useful in evaluating the applicability of both, thereby included in the sample, and design. For studies based on the informing study design and decision-making of future inves- FMSF, which aspects of the FMSF (contextual influences, tigators. Our intent in this review was to determine how the components/dimensions, management style, outcomes) were FMSF and FaMM have been used in research by examining addressed in the research were noted. For studies using the the aims, sample, and design of published research reports. FaMM, we also noted the conceptual underpinnings and We conducted a scoping review of published studies to summarized how the measure was used in the study (e.g., assess the extent and ways in which the FMSF and FaMM independent versus dependent variable) and any data pro- had been used. Following guidelines recommended by vided on the reliability of the six FaMM scales. Four Knafl et al. 89 summaries were completed, one for each of the three ver- Table 1. Number of Reports Citing the FMSF or the FaMM. sions of the FMSF and one for the FaMM. Published research based The first three authors divided the work of extracting the on FMSF or FaMM Other data from the research reports. As a quality check, the fourth Number of studies/ citations to author independently extracted the same information from Citation number of reports FMSF or FaMM every fifth article. These checks revealed we were thorough FMSF 1990 8/8 59 and accurate in the data extractions and only minor correc- FMSF 2003 16/23 46 tions were made to the initial extractions. FMSF 2012 8/10 34 The analysis was straightforward and included simple FaMM 41/44 38 listings and counts (e.g., countries where data were collected, Total 73/85 177 conditions studied) and categorization of certain aspects of the study (e.g., aims, design, use of FaMM). The first author Note. Each study was counted in one tally only. If more than one version of FMSF was cited, only the most recent version was counted in the did the initial categorizations, which were then reviewed by tally. Studies using the FaMM and citing the FMSF were tallied under the the co-authors. Any disagreements were resolved through FaMM. FMSF = Family Management Style Framework; FaMM = Family discussion to reach consensus. If more than one version of Management Measure. FMSF was cited in the research report, only the most recent version was counted in the tally. of children’s feeding problems and SanGiacomo and col- leagues (2019) described the management challenges Results reported by mothers of childhood brain tumor survivors. In four studies (Conlon et al., 2008; Knafl et al., 1996; McCarthy Final Sample & Gallo, 1992; Obrecht et al., 1992), investigators described In Table 1, the breakdown of the 262 published articles citing changes in family management over time. One investigator one or more versions of the FMSF or citing the FaMM is (Johnson et al., 2014) used the framework to support devel- summarized. The FMSF was named as the conceptual opment of a social script iPad application for children with grounding in 32 studies and the FaMM was used in 41 stud- autism. ies, 17 of which were based on the FMSF. Each study was Beginning with the 1990 version of the FMSF, investiga- counted in one tally only to avoid artificially inflating the tors were extending the framework to the study of health number of studies based on the FMSF. Studies using the challenges not included in its original development. For FaMM and citing the FMSF were tallied under the FaMM. example, Krouse (2002) applied it in a study of family man- Both the FMSF and the FaMM also were cited in nonre- agement of feeding low birthweight infants; Van Riper search articles and research reports where they were not (2005) explored the family experience of genetic testing; and applied but were referenced in the background or discussion Raymond and colleagues (2017) described parents’ perspec- sections of the article. These were categorized as “Other tives on managing the care of their adult child with serious Citations.” Eight reports citing the FaMM addressed efforts mental illness. to assess or adapt it for use with non-English samples. In Consistent with their descriptive or exploratory intent, contrast to the tally for “Published Research Based on FMSF most investigators described their study design as qualita- or FaMM,” when reports in the “Other” category included tive, with six being longitudinal. In most studies (n = citations to multiple versions of the FMSF, each of these cita- 25/78%), investigators addressed a single condition (e.g., tions was tallied. The rationale for this was that authors were Type 2 diabetes, end-stage renal disease) or group of related using the citations to support their work, and thought it nec- conditions (e.g., cancer, serious mental illness). In eight stud- essary, in some cases, to cite multiple versions. ies, researchers focused on a health-related challenge not linked to a specific condition (e.g., technology dependence, feeding problem). The number of families included in the FMSF samples ranged from case studies of one or two families to As summarized in Table 2, study participants for most (n = (Gallo, 1990; McCarthy & Gallo, 1992; Obrecht et al., 1992; 26/81%) of the 32 studies based on the FMSF were recruited Van Riper, 2005) to Toly and colleagues’ (Toly et al., 2012a, in the United States, although investigators from Brazil, 2012b; Toly & Musil, 2015) study of more than 100 families Thailand, and Canada also published study results. The of children with technology dependence. About one half research aims of the studies citing the FMSF were most often (51%) of studies enrolled 20 families or less and only four descriptive or exploratory such as an early study by Williams studies enrolled participants from 50 or more families. (1995) describing the problems and management behaviors Family members included in the sample varied across used by mothers of daughters with precocious puberty or studies. In nine studies, sample inclusion criteria required Turner syndrome. More recently, Estrem and colleagues participation by multiple family members, with five focusing (2017) applied the FMSF to a study of family management on dyads within the family. For example, both Beacham and 90 Table 2. Overview of Studies Conceptually Grounded in FMSF. Country where data Sample (families/family Study were collected Aims members) Condition(s) studied Design Aspects of FMSF addressed in study 1990 Version of FMSF Edwards-Beckett & USA To describe parents’ perception contextual 30 families (30 mothers, 27 Myelomeningocele Qualitative description • Contextual influences (derived Cedargren (1995) influences and their level of supportiveness fathers) from data) Gallo (1990) USA To describe a family with a child with One family (mother, Type 1 diabetes Qualitative case study • Contextual influences (resources) diabetes from the individual members’ and father, child, sibling) • Components/dimensions of family family’s point of view management • Management style Knafl et al. (1996) USA To identify styles of family response to 63 (62 mothers, 53 fathers, Multiple, non- Longitudinal qualitative • Contextual influences (resources) childhood chronic illness and explore their 66 children 7–14 y/o life-threatening description • Components/dimensions of family relationship to family and family member [three families with two chronic conditions management functioning ill children], 28 siblings) • Management styles Krouse (2002) USA To identify, describe, and provide a 13 families (13 mothers) Low birth weight Longitudinal qualitative • Contextual influences (social theoretical analysis family management of description support) breastfeeding a low birth weight infant • Components/dimensions of family management • Management styles McCarthy & Gallo USA To describe family management of Type 1 One family (mother, father, Type 1 diabetes Longitudinal qualitative • Contextual influences (social case study support, resources) (1992) diabetes and compare responses from the child with condition, two individual family members siblings) • Components/dimensions of family management • Management styles Murphy (1990) USA To illustrate three management styles 20 families (20 mothers, 20 High-risk infants Grounded theory • Components/dimensions of family adopted by couples following the birth of a fathers) management high-risk infant • Management styles Obrecht et al. (1992) USA To describe how a family with a child One family (mother, End-stage renal Longitudinal case • Components/dimensions of family with end-stage renal disease defined and father, child with disease study management managed their situation condition, sibling) • Management styles Williams (1995) USA To identify the problems and management 12 families (12 mothers) Precocious puberty Qualitative description • Contextual influences (care behaviors used by mothers in attempting to and Turner providers and systems) solve problems in school, peer, and family syndrome • Components/dimensions of family life for their daughters with precocious management puberty or Turner syndrome • Management styles (continued) 91 Table 2. (continued) Country where data Sample (families/family Study were collected Aims members) Condition(s) studied Design Aspects of FMSF addressed in study 2003 Version of the FMSF Athaseri et al. (2008) Thailand To describe (a) definition, (b) management 22 families (22 mothers) Type 1 diabetes Qualitative descriptive • Components/dimensions of family behaviors, and (c) perceived consequences management of having a child with Type 1 Diabetes. Bingham & USA To describe how spirituality assists people 27 dyads—24 husband/ Parkinson’s disease Qualitative descriptive • Contextual influences Haberman (2006) with Parkinson's Disease and their families wife; three parent/child (spirituality) in defining and managing the day-to-day experience of the disease Bousso et al. (2012) Brazil To explore how families define and manage 14 family members (11 Children attending Qualitative descriptive • Components/dimensions of family their life when they have a child or mothers, one father, one an outpatient management adolescent undergoing palliative home care aunt, one grandmother) palliative care unit Conlon et al. (2008) USA To describe changes in family management 71 families (51 mothers, 20 Attention deficit Secondary analysis • Management styles following treatment fathers) hyperactivity of archival data disorder comparing family management before and after treatment Gallo et al. (2005, USA To identify patterns of information 86 families (83 mothers, 53 Varied single gene Mixed methods • Contextual influences (resources) 2009) management and explore their relationship fathers, six others) conditions • Components/dimensions of family to individual and family characteristics and management functioning • Family information management styles • Outcomes (parent, family) Hopkins & Gallo USA To describe mothers’ perception of their 41 families (41 mothers) Sickle cell anemia, Qualitative descriptive; • Contextual influences (care (2012) children’s school life within the context of cystic fibrosis secondary analysis providers and systems) overall family management • Components/dimensions of family management Johnson et al. (2014) USA To examine the effectiveness of the social 32 parent–child dyads Autism spectrum Pilot feasibility study Not specified script intervention, “Going to Imaging” disorder for randomized application (iPad app) control trial Knafl et al. (2010) USA To identify the parents’ perceptions of 28 families (28 mothers, 20 Varied single gene Qualitative • Components/dimensions of family normalization and the meaning attributed fathers) conditions description; management to its presence or absence secondary analysis (continued) 92 Table 2. (continued) Country where data Sample (families/family Study were collected Aims members) Condition(s) studied Design Aspects of FMSF addressed in study Mendes-Castillo et al. Brazil To understand the family management of Eight families (eight Liver transplantation Qualitative description • Component/dimensions of family (2012); Mendes- childhood liver transplantation mothers, one father) management Castillo, Bousso, & Silva, 2014); Mendes-Castillo, Bousso, Ichikawa, et al., 2014) Misko & Bousso Brazil To understand family management of cancer Six families (six mothers) Cancer Qualitative description • Components/dimensions of family (2007) at home and decision-making related to management seeking emergency care Rempel et al. (2012) Canada To examine family management hypoplastic 24 families (24 mothers, 17 Hypoplastic left Qualitative • Components/dimensions of family left heart syndrome from diagnosis through fathers) heart description; management the early period of home care secondary analysis • Family management styles Toly et al. (2012a, USA To examine the interrelationships between 102 families (102 mothers) Technology Hypothesis testing; Not specified 2012b); Toly & normalization, maternal depression, level dependent longitudinal Musil (2015) of child’s technological dependence and children living at illness severity, family functioning, and home sociodemographic characteristics Van Riper (2005) USA To explore the family experience of genetic Two families (Case 1— Huntington disease Case study • Components/dimensions of family testing husband, two daughters; (Case 1) management Case 2—three adult Breast cancer gene sisters) (Case 2) Wiegand et al. USA To describe family management after the 19 families (56 family Unexpected life- Phenomenology • Components/dimensions of family (2008); Wiegand death of a family member who had life- members) threatening illness management (2012) sustaining therapy withdrawn of injury • Family management styles Wirattanapokin et al. Thailand To explore patterns of self-management 16 families (16 Prediabetes and Grounded theory • Contextual influences (social (2013) among adolescents with prediabetes or adolescents) Type 2 diabetes support, resources) Type 2 diabetes • Components/dimensions of family management • Family management styles Wollenhaupt et al. USA To uncover the family management 25 families (25 adolescents Spina bifida Qualitative descriptive; • Components/dimensions of family (2012) perspectives of adolescents with spina 12–21 y/o) secondary analysis management bifida Young (2013) USA To explore how families with children at 15 families (15 patients, 14 Bone marrow Qualitative description • Components/dimensions of family home manage 4–12 months after an adult adult significant others) transplant management family member had been discharged from the hospital following a bone marrow transplantation (continued) 93 Table 2. (continued) Country where data Sample (families/family Study were collected Aims members) Condition(s) studied Design Aspects of FMSF addressed in study 2012 Version of FMSF Beacham & Deatrick USA To describe children’s perceptions of family 32 families (32 children, 32 Multiple non- Qualitative description • Components/dimensions of family (2015) management parents) life-threatening management chronic conditions Cody et al. (2018) USA To describe the perspectives (view of the 19 families (19 family Adult hospitalized Qualitative description • Components/dimensions of family illness, role in future management, and members—unspecified) on Intensive care management long-term consequences on individual and unit family functioning) of family members of patients in the intensive care unit who participated in family bedside rounds versus those who did not Estrem et al. (2017) USA To describe parents’ perspectives of their Nine families (nine Feeding problem Qualitative description • Components/dimensions of family child’s eating and of feeding management mothers, three fathers) management and to identify themes of feeding management in the context of everyday family life Fleming, Knafl, & Van USA To examine, based on the gender of the Nine families (nine Congenital adrenal Mixed methods • Components/dimensions of family Riper (2017) child, the varying family experiences of mothers, seven fathers) hyperplasia analysis based on management having a child with congenital adrenal qualitative interviews hyperplasia Koplow et al. (2015a, USA To examine the experiences of family 10 families (10 primary Older family Longitudinal qualitative • Contextual influences (social 2015b) members in the nursing home placement caregivers; varied family member in a description support) and care of an older family member relationships) nursing home • Components/dimensions of family management Raymond et al. USA To describe parents’ perspectives on 30 families (30 parents; Serious mental Qualitative description • Contextual influences (care (2017) managing the care of their adult child with predominantly mothers) illness providers and systems) serious mental illness; functioning • Components of family management SanGiacomo et al. USA To describe the family management 45 families (45 mothers) Brain tumor survivor Mixed methods; • Component/dimensions of family (2019) challenges facing families of childhood brain secondary analysis management tumors data from qualitative • Family management styles interviews Note. FMSF = Family Management Style Framework. a b Sociocultural context listed only if included in the analysis beyond describing demographic characteristics of sample. Research study was the unit of analysis. 94 Journal of Family Nursing 27(2) Deatrick (2015) and Johnson and colleagues (2014) recruited Seventeen of the 41 studies using the FaMM were based child–parent dyads; Murphy (1990) included mother–father on the FMSF, eight of which were conducted outside the dyads; and Young (2013) recruited adult patients who had United States. Eighteen studies were based on other frame- received a transplant and an adult family member. works, providing evidence that the FaMM is suitable for use Investigators reporting family case studies included data in studies with diverse theoretical underpinnings. Authors of from an even broader range of family members. McCarthy six studies did not report using a framework. Five studies of and Gallo (1992) purposely selected a family for their case families of children with Down syndrome undertaken in study of family management that included interview data Ireland (Caples et al., 2018), Korea (Choi, 2015; Choi & Van from the mother, father, child with the chronic condition, and Riper, 2014), Taiwan (Hsiao, 2014; Hsiao & Van Riper, one sibling. Investigators in nine studies offered family 2011), and the United States (Van Riper et al., 2018) were members the option of participation by multiple family based on the Resiliency Model of Family Stress, Adjustment, members, but this was not a requirement for inclusion in the and Adaptation (McCubbin & McCubbin, 1993). Other sample. In other studies, a family member fulfilling a speci- examples of using the FaMM in studies not based in the fied family role (e.g., primary caregiver) was recruited and FMSF include Muscara and colleagues’ (2015; Rayner et al., the family designated who would represent them in the sam- 2016) use of Kazak’s Pediatric Medical Traumatic Stress ple. When families were given the option of participation by Model (Kazak et al., 2006) in their study of parents of chil- multiple family members or asked to designate a family par- dren with a life-threatening condition and Son, Kim, and col- ticipant, the final sample predominantly comprised mothers. leagues' (2018) use of Bandera’s Self-Efficacy Theory In seven studies, inclusion criteria specified mothers. (Bandura, 1997) to examine factors influencing family man- We also examined the extent to which investigators stud- agement in the context of having a child with atopic derma- ied all or selected aspects of the framework. Across the 32 titis. In two studies, investigators reported using two studies based on the FMSF, Gallo and colleagues’ (2005, frameworks, one of which was the FMSF (Salvador et al., 2009) study of family information management was the only 2019a, 2019b; Van Riper et al., 2018). In 30 studies, investi- one that addressed all four aspects of the framework gators used all FaMM scales. In the remaining 11 studies, (Contextual Influences, Major Components, Management investigators used selected scales. Styles, and Outcomes). More often researchers studied For the 17 studies based on the FMSF and using the selected aspects of the framework. Investigators addressed a FaMM, we also examined what aspects of the framework single aspect of the FMSF in 14 studies and two or three investigators studied. Because the FaMM scales were aspects in 15 studies. Of the 14 studies focusing on a single grounded in the FMSF dimensions, all studies addressed this aspect of the framework, most (n = 11) focused on describing aspect of the framework. Except for Lindsey’s (2016) study how the six dimensions of family management were reflected of family management following parents’ participation in a in their sample. For example, Estrem and colleagues (2017) respite program and Im and colleagues’ (2019) study of the used the dimensions of the framework to describe parents’ mediating effect of family management on the relationship efforts to manage a child’s feeding problems and Misko and between parental stress and child quality of life, all other Bousso (2007) used them to describe family management of studies addressed multiple aspects of the framework. a child’s cancer at home. In 12 of the 32 studies, investigators Researchers in 11 studies measured outcomes of family man- went beyond describing how the FMSF dimensions were agement for the person with the condition, parents, and/or reflected in their sample to identify styles of family manage- the family system and investigators in eight studies exam- ment based on the FMSF dimensions, with the styles varying ined contextual influences on family management, with most across samples. For example, Rempel and colleagues (2012) addressing resources. described changing patterns of family management in parents Across studies, investigators incorporated the FaMM in of children who were surgically treated for a life-threatening varying ways. Using correlation or regression analyses, 28 cardiac condition. Investigators in nine studies examined par- studies focused on examining the relationship between family ents’ perceptions of the link between the contextual influ- management as measured by one of more FaMM scales and ences included in the framework and family management. other family or family member variables. For example, Gibson-Young and colleagues (2014) examined the relation- ship between maternal perceptions of Condition Management FaMM Ability and Condition Management Effort and asthma mor- In Table 3, the characteristics of studies using the FaMM are bidity in 101 children in the United States. Lohan and col- summarized, and in Tables 4 and 5, reports of the internal leagues (2017) studied the relationship between parents’ consistency reliability (ICR) for FaMM scales are presented. Condition Management Effort and their perceptions of their Researchers from 11 countries have reported using the diabetes self-efficacy. In other studies, investigators exam- FaMM. In contrast to the FMSF where U.S.-based samples ined variables such as parental age (Close et al., 2016) or fam- predominated, the majority (n = 25/61%) of studies using ily functioning (Zhang et al., 2015) as predictors of family the FaMM were conducted outside the United States. management. In seven studies, investigators examined the 95 Table 3. Overview of Studies Using the FaMM. Country where Sample design and no. of families Aspects of FMSF addressed in a,b Article data collected Aims (as stated by authors) Conceptual framework and family members Sample—condition Design How family management scales used study Caples et al. (2018) Ireland To examine families of children with Down Resiliency Model of Family 95 families (79 mothers, 16 fathers) Down syndrome Mixed methods Predictor—FaMM scales as predictor Not applicable syndrome residing in Ireland adapt to their Stress, Adjustment, and of family adaptation child’s diagnosis Adaptation Choi (2015) Korea To examine factors influencing family Resiliency Model of Family 147 families (147 parents— Down syndrome Mixed methods Predictor—FaMM scales as predictor Not applicable adaptation in Korean families with a child Stress, Adjustment, and unspecified) of family adaptation with Down syndrome Adaptation Choi & Van Riper Korea To explore Korean mothers’ perceptions of Resiliency Model of Family 105 families (105 mothers) Down syndrome Descriptive Predictor—FaMM scales as predictor Not applicable (2014) their typically developing children when Stress, Adjustment, and cross-sectional of sibling adaptation there is a child with Down syndrome in Adaptation survey the family Close et al. (2016) USA To describe family management challenges FMSF 40 families (33 mothers, seven Klinefelter Mixed method Outcome—Influence of parents’ age • Contextual influence (care for parents who have sons with Klinefelter fathers) syndrome on family management providers and systems) Syndrome • Components/dimensions of family management • Outcomes (parent and family) Deatrick et al. USA To test a hypothesized model of caregiver Model based on literature 186 families (186 mothers) Brain tumor Cross-sectional Predictor—Management Ability scale Not applicable (2014) competence. and Raina et al., theoretical survivors telephone as predictor caregiver competence stress process model survey Deatrick et al. USA To develop a typology of family management FMSF 186 families (186 mothers, 134 Brain tumor Mixed methods Descriptive—patterns of family • Contextual influences (2018) patterns of brain tumor survivors and survivors) survivors management based on scales (resources) examine the relationship between pattern Correlate—patterns and family • Components/dimensions of membership and family functioning and function and mother and survivor family management health-related quality of life health-related quality of life • Family management styles • Outcome (survivor, mother, and family functioning) Duangdech et al. Thailand To validate a causal model of factors Resiliency Model of Family 208 families (131 mothers; identity Cerebral palsy Cross-sectional Mediator—Family management as Not applicable (2017) contributing to the health status of children Stress, Adjustment, of other family members correlational a mediator of the relationship with cerebral palsy in Thailand and Adaptation and the unspecified) between social support, family literature hardiness, access to care, illness severity and of child’s health status Fleming, Knafl, USA To describe adrenal crisis events in children FMSF 68 families (60 mother, 15 fathers, Congenital adrenal Mixed methods Correlate—relationship between • Components/dimensions of Knafl, & Van with congenital adrenal hyperplasia and two grandmothers) hyperplasia Management Ability and View Family family management Riper (2017) examine the relationship between parents’ Impact • Outcome (family functioning) perceived management ability and the impact of the condition on family life Geense et al. (2018) Netherlands To identify outcome measures and assess Not reported 85 families (83 mothers; 50 fathers) Chronic kidney Randomized Outcome—Family management Not applicable potential effectiveness, and design issues disease controlled trial outcome of intervention for a web-based intervention for parents of feasibility study children with kidney disease Gibson-Young et al. USA To examine the relationships between FMSF 101 families (101 mothers) Asthma Cross-sectional Correlate—Management Ability and • Components/dimensions of (2014) maternal caregiver perceptions of family survey Effort scales and asthma morbidity family management management and asthma morbidity • Outcome (ill child) Hackworth et al. Australia To describe the protocol for a study evaluating Not reported 120 families (120 adolescents, 120 Type 1 diabetes Randomized Outcome—Family Management Not applicable (2013) the efficacy of an online adolescent and parents or guardians) control trial outcome of intervention parenting intervention (continued) 96 Table 3. (continued) Country where Sample design and no. of families Aspects of FMSF addressed in a,b Article data collected Aims (as stated by authors) Conceptual framework and family members Sample—condition Design How family management scales used study Hickey et al. (2018) Australia To test the efficacy of a family intervention Not reported 47 families (38 mothers, 29 fathers, Brain injury Randomized Outcome—Family management Not applicable in promoting early adaptation to a child’s four siblings, one grandmother) control trial outcome of intervention acquired brain injury Baseline usual care (18 mothers, 11 fathers, one sibling) Hobbie et al. (2010) USA To determine the educational needs of Not reported 15 families (15 caregivers Cancer Descriptive, Descriptive—Family management Not applicable parents as their children completed cancer unspecified) cross-sectional following treatment treatment and assess the feasibility of measuring parental needs, anxiety, and family management as treatment ends Hsiao (2014); Hsiao Taiwan To explore the relationships among family Resiliency Model of Family 83 families (80 mothers, 75 fathers) Down syndrome Cross-sectional Correlate—Family Management scales Not applicable & Van Riper demographics, family demands family Stress, Adjustment, and survey and family adaptation (2011) appraisal, and individual and family adaption Adaptation Im et al. (2019) Korea To examine the relationship between parenting FMSF 93 families (90 mothers, three Epilepsy Cross-sectional Mediator—Family Management as • Components/dimension of stress and quality of life in children with fathers) survey design mediator of relationship of parental family management epilepsy and the mediating effect of family stress and child quality of life management D. H. Kim & Im Korea To examine the influence of family management FMSF 158 families (149 mothers, five Cancer Cross-sectional Correlate—Family Management scales • Contextual influences (2015) on psychosocial problems of childhood fathers, four grandparents) survey and child’s psychosocial problems (resources) cancer survivors in Korea • Components/dimensions of family management • Outcomes (survivor functioning) I. Kim et al. (2016) USA To examine the relationships between child FMSF 234 families (234 mothers) Autism Cross-sectional Mediator—Family Management as a • Components/dimensions of behavior problems and mothers’ depressive survey mediator of relationship between family management symptoms child’s behavior problems and • Outcomes (maternal mother’s depressive symptoms functioning) Knafl et al. (2013) USA Identify patterns of family management and FMSF 414 families (414 mothers, 161 Multiple chronic Cross-sectional Descriptive—Patterns comprised • Components/dimensions of examine their relationship to child and family fathers) physical survey Family Management scales family management functioning conditions • Family management styles • Outcomes (child and family functioning) Lerret et al. (2015) USA To examine parents’ readiness of hospital Meleis Transitions Theory 51 families (44 females, seven Solid organ Prospective, Outcome—Influence of discharge Not applicable discharge and its relationship to males) transplant longitudinal, readiness Condition Management postdischarge coping, family impact, correlational Effort scale adherence to medications, and follow-up, design and utilization of following hospital discharge. Lindsey (2016) USA To examine in families that have a child with FMSF 22 families (20 mothers, one father, Children with Mixed method Outcome—respite camp program • Components/dimensions of a special health care needs, what are the one grandmother) special health leading to better family Management family management effects of respite care through a therapeutic care needs summer day camp program on family management Lohan et al. (2017) Australia Literature-based model 186 families (178 mothers, eight Type 1 diabetes Cross-sectional Correlate—Relationship of Not applicable fathers) survey Management Effort to parents’ diabetes self-efficacy Mendes et al. Portugal To compare family functioning and parents’ and Socioecological framework 263 families (227 mothers, 36 Asthma, obesity, Cross-sectional Mediator—Family Life Difficulty and Not applicable (2016) children’s adaptation to chronic conditions of adaptation fathers) epilepsy, survey Parental Mutuality as mediator of diabetes relationship between family cohesion and family member adaptation (continued) 97 Table 3. (continued) Country where Sample design and no. of families Aspects of FMSF addressed in a,b Article data collected Aims (as stated by authors) Conceptual framework and family members Sample—condition Design How family management scales used study Mendes et al. Portugal To examine the moderating role of parents’ Social Comparison 201 families (201 primary Epilepsy Cross-sectional Predictor—Child Daily Life and Family Not applicable (2017) social comparison orientation in the Orientation caregivers, 201 children) survey Life Difficulty as predictor of child’s associations between family management and health-related quality of life and children’s health-related quality of life and perceived stigma perceived stigma Muscara et al. Australia To examine the prevalence and trajectory Kazak’s Pediatric Medical 192 families (180 mothers, 76 Child with a Prospective Moderator—FaMM used as a measure Not applicable (2015); Rayner of parent psychosocial distress, identify Traumatic Stress Model fathers) life-threatening longitudinal of the illness experience, which was et al. (2016) demographic, psychosocial and illness-related illness or injury survey described as a moderator parents’ predictors of parent psychosocial distress psychosocial distress over time, and examine the relationship between parent psychosocial distress and child psychological well-being Quast et al. (2018) USA To examine the prospective influence of Paterson and Drotar’s 35 families (35 mothers) Brain tumor Longitudinal Correlate—Family Life Difficulty and Not applicable family functioning on survivor quality of life theoretical model survivors survey survivor quality of life months later of childhood cancer survivorship Quast et al. (2016) USA To describe the physical and psychosocial Raina’s conceptual model of 50 families (48 mothers, two Brain tumor Longitudinal Correlate—Relationship of Condition Not applicable health-related quality of life of parents caregiving fathers) survivors survey Management Effort and Condition of brain tumor survivors and variables Management Ability to parents’ associated with parents’ quality of life quality of life Rearick et al. (2011) USA To explore the experiences of parents and Adapted version of Ireys 11 families (8 mothers, 3 fathers) Type 1 diabetes Mixed methods Descriptive—FaMM scales used to Not applicable children newly diagnosed with Type 2 et al.’s (2001) Social describe parents’ experiences diabetes with peer social support following Support Framework an intervention to enhance support Salvador et al. Portugal To examine the contribution of individual and FMSF 205 families (177 mothers, 28 Cancer—in Cross-sectional Correlate—Relationship of Family Not applicable (2019a, 2019b) family factors to psychological well-being Social ecological Theory fathers) treatment or survey Life Difficulty, Parental Mutuality of parents of children and adolescents completed to parenting satisfaction, parental diagnosed with cancer. treatment in past anxiety and depression 5 years Sananreangsak et al. Thailand To examine variables contributing to parents’ FMSF 88 families (69 mothers, 16 fathers, Thalassemia Cross-sectional Predictor—FaMM scales as predictor • Component/dimensions of (2012) medical, role, and psychosocial management three unknown) survey of medical management, role family management behaviors management, and psychosocial • Outcome (family functioning) management Sheng et al. (2018) China To explore the relationships between family Hypothesized model based 268 families (268 youth, 181 Diabetes, Cross-sectional Predictor—family management as a Not applicable management, self-management, and on the literature mothers, 46 fathers, 41 rheumatic survey predictor of youth self-management, transition readiness grandparents) disease, renal transition readiness, and quality disease of life Son, Kim, et al. Korea To identify the variables that affect family Bandura’s Self-Efficacy 168 families (168 mothers) Atopic dermatitis Cross-sectional Outcome—Influence of disease Not applicable (2018) management of childhood atopic dermatitis Theory survey severity on Condition Management Effort Predictor—Condition Management Effort as a predictor of Condition Management Ability Effort Son, Song, et al. Korea This study aimed to identify the effects of None reported 109 families (109 mothers) Chronic allergic Cross-sectional Outcome—Influence of mother- Not applicable (2018) the mother-medical staff partnership on diseases survey medical staff partnership on mothers’ condition management ability Condition Management Ability (continued) 98 Table 3. (continued) Country where Sample design and no. of families Aspects of FMSF addressed in a,b Article data collected Aims (as stated by authors) Conceptual framework and family members Sample—condition Design How family management scales used study Sullivan-Bolyai et al. USA To explore feasibility/ability to recruit and FMSF 22 families (22 mothers, 22 youth) Type 2 diabetes Randomized Outcome—Family management as an • Contextual influences (2016) conduct a two-arm trial on reeducation, controlled outcome of trial (resources) collaboration, and social support trial Feasibility • Components/dimensions of study family management Swallow et al. England To describe the protocol for an online parent None reported 80 families (80 primary caregivers— Kidney disease Randomized Outcome—Family management as an Not applicable (2012) information and support package for home- unspecified) controlled trial outcome of trial based care feasibility study Van Riper et al. USA To compare family management of children FMSF Chronic physical conditions—412 Multiple chronic Secondary Descriptive—Comparison of family • Contextual influences (2018) with a chronic physical condition to family Resiliency Model of Family families (253 mothers, 159 physical analysis of management in two groups (resources) management of a child with Down syndrome Stress and Adaptation fathers) conditions data from two • Components/dimensions of using data from two studies Down syndrome − 483 families Down syndrome cross-sectional family management (427 mothers, 56 fathers) survey Verchota & Sawin USA To examine the relationship of key individual Family Self-Management 103 families (103 parent-adolescent Type 1 diabetes Cross-sectional Correlate—Relationship of Family Not applicable (2016) and family self-management theory, context, Theory dyads) survey Life Difficulty to self-management and process variables on proximal and behaviors of adolescents distal outcomes in adolescents with Type 1 diabetes Weissheimer et al. Brazil To investigate the relationship of family FMSF 141 families (117 mothers, 19 Neurologic Cross-sectional Correlate—Relationship of all FaMM • Contextual influences (2018) management to socio-demographic and fathers, five other family conditions survey scales to child’s physical dependence (resources) physical dependence aspects of children and members) and multiple socio-demographic • Components/dimensions of adolescents with neurological disorders variables family management • Outcome (child) Zhang et al. (2014) China To identify patterns and predictors of family FMSF 387 (257 mothers; other family Multiple chronic Cross-sectional Descriptive—Identified patterns of • Components/dimensions of management members not specified) physical survey family management based on FaMM family management conditions scales • Family management styles Outcome—Influence of child and family functioning on management pattern Zhang, Wei, Han, China To determine the applicability of the Family FMSF 538 families (primary caregivers— Multiple chronic Cross-sectional Outcome—Influence of contextual • Contextual influences et al. (2013) Management Style Framework for Chinese unspecified) physical survey variables on family management (resources) families with a child who has a chronic conditions (calculated as two composite • Components of family condition scales—Easy Family Management; management Difficult Family Management) • Outcome (child and family Mediator—family management as a functioning) mediator of relationship between contextual variables and child and family functioning Zhang et al. (2015) China To determine the key predictors for each FMSF 399 families (265 mothers, Multiple chronic Cross-sectional Outcome—Child and family • Contextual influences aspect of family management in families with 89 fathers, 45 other family conditions survey characteristics and functioning (resources) children who have chronic condition members—unspecified) variables as predictors of FaMM • Components/dimensions of scales family management Zhang, Wei, Zhang, China To investigate the impact of family management FMSF 618 families (618 primary Multiple chronic Cross-sectional Predictor—FaMM scales as predictor • Components/dimensions of et al. (2013) on family functioning of families with caregivers—unspecified) physical survey of family functioning family management chronically ill children conditions • Outcome (family functioning) Note. FaMM = Family Management Measure; FMSF = Family Management Framework. a b Contextual influences limited to those included in the FMSF (social support, care providers and systems, and resources) that were included in the analysis beyond describing demographic characteristics of sample. FaMM scales measure components of Family Management Style Framework. Knafl et al. 99 Table 4. Internal Consistency Reliability of Family Management reported a range of scores across scales (Table 4), with the Measure in Studies Reporting a Range of Scores Across Scales. ICR reaching .70, often considered the cut-off for acceptable reliability (DeVellis, 2003) in three studies and .62 or higher Study Scale range for all scales in the remaining studies. Investigators for 10 Caples et al. (2018) >.70 all scales studies reported the ICR for each scale used in the study. Choi & Van Riper (2014) .63–.90 (View of Condition Regarding individual FaMM scales, Table 5 provides evi- Impact not reported) dence of the reliability of FaMM scales across multiple con- Close et al. (2016) >.68 all scales ditions and sociocultural contexts. The strongest evidence for Deatrick et al. (2018) .72–.89 ICR was for the Family Life Difficulty scale. In seven studies, Im et al. (2019) .65–.89 investigators from different countries (Korea, Portugal, D. H. Kim & Im (2015) .69–.90 United States) studying different conditions (brain tumor sur- I. Kim et al. (2016) .64–.91 vivorship, cancer, Down syndrome, epilepsy, solid organ Knafl et al. (2013) >.70 all scales transplant, multiple conditions) reported ICR scores ranging Zhang, Wei, & Han (2013) .62–.84 from .81 to .92 and no investigator reported an ICR value less Conducted multiple studies reporting same internal consistency reliability than .70. Support for the ICR of Parental Mutuality also was range, which was established in first study to determine applicability of strong with investigators from five studies based on samples the measure to families in China. representing different countries (Korea, Portugal, United States) and conditions (cancer, Down syndrome, solid organ mediating or moderating effect of FaMM scales. For exam- transplant, multiple conditions) reporting ICR scores greater ple, in a study of Korean families in which a child had epi- than .70. For the remaining four scales (Child Daily Life, lepsy, Im and colleagues (2019) examined the mediating Condition Management Ability, Condition Management effect of family management on the relationship between par- Effort, View of Condition Impact), there were reports of ICR enting stress and the child’s quality of life. The FaMM scales scores both exceeding and falling below .70, though those also were used to compare family management of different exceeding predominated and reflected samples representing types of conditions as in Van Riper and colleagues’ (2018) different countries and conditions. The weakest evidence for comparison of families of children with Down syndrome to support of ICR was for the View of Condition Impact scale. those of children with a chronic physical condition. In three Investigators in two studies (Duangdech et al., 2017; studies (Deatrick et al., 2018; Knafl et al., 2013; Zhang et al., Sananreangsak et al., 2012) incorrectly scored the FaMM by 2014), investigators used cluster analysis of the six FaMM calculating a total single score rather than individual scales scales to identify patterns of family management. scores. Across studies, samples varied as to condition, size, and family member participants. The 18 different conditions Discussion studied included chronic physical conditions such as Type 1 diabetes and asthma, cancer and other life-threatening condi- Through this scoping review, we traced the use of FMSF and tions, genetically based conditions, and conditions associ- FaMM and described the frequency and range of research ated with intellectual or developmental disabilities. Most applications across conditions, age groups, and countries. investigators studied a single condition or related conditions Our review provides evidence of the broad applicability of (e.g., cancer, neurologic disease), with only seven studies both the framework and measure and highlights areas of con- recruiting sample families in which children were diagnosed centrated activity and areas of limited application. The with different conditions. The number of families included in review also provides evidence to guide future research. these samples ranged from 11 to 895, with more than half Although the framework and measure were developed (n = 25; 61%) including more than 100 families. In 29 stud- based on studies of families in the United States with chil- ies (71%), only one family member participated in the study, dren with non-life-threatening chronic physical conditions with 13 studies explicitly recruiting mothers, six specifying not associated with developmental delays, the review pro- parent or primary caregiver, and the remaining recruiting vides strong evidence of broader applicability, especially family members in varied roles. In the latter case, mothers about the types of conditions studied and cultural context. always made up most of the sample. Investigators in four The FMSF and the FaMM have been used in studies of fami- studies recruited parent–child dyads (Hackworth et al., 2013; lies in which children have a condition that is life-threatening Sheng et al., 2018; Sullivan-Bolyai et al., 2016; Verchota & or includes intellectual disability or developmental delay. Sawin, 2016). In eight studies, participation by multiple fam- Both also have been used in studies of survivorship and the ily members was optional. aftermath of serious injury, and the FMSF has been used in Investigators varied in the extent to which they reported studies addressing family response to a health challenge fac- the ICR of the FaMM scales in their study, with 15 reporting ing an adult family member. The FaMM items reference “our no results or citing the ICR data from the instrument develop- child with the condition,” limiting the applicability of the ment study (Knafl et al., 2011). In nine studies investigators measure for studies in which an adult is the family member 100 Journal of Family Nursing 27(2) Table 5. Internal Consistency Reliability of Individual Family Management Scales. Scale ICR .70 or better ICR < 70 Child Daily Life Hsiao & Van Riper (2011)—.78 Lerret et al. (2015)—.65 Mendes et al. (2017)—.73 Van Riper et al. (2018)—.73–.79 Condition Deatrick et al. (2014)—.74 Lerret et al. (2015)—.52 Management Ability Fleming, Knafl, Knafl, & Van Riper. (2017)—.81 Quast et al. (2016)—.61 Hsiao & Van Riper (2011)—.73 Son, Kim, et al. (2018)—.81 Van Riper et al. (2018)—.72–.77 Condition Hsiao & Van Riper (2011)—.72 Lerret et al. (2015)—.51 Management Effort Quast et al. (2016)—.74 Lohan et al. (2017)—.68 Van Riper et al. (2018)—.74–.78 Son, Kim, et al.(2018)—.60 Family Life Difficulty Hsiao & Van Riper (2011)—.87 Lerret et al. (2015)—.87 (heart transplant subsample) Mendes et al. (2016)—.83 Mendes et al. (2017)—.86 Quast et al. (2018)—.81 Salvador et al. (2019a, 2019b)—.87 Van Riper et al. (2018)—.91–.92 Parental Mutuality Hsiao & Van Riper (2011)—.74 Lerret et al. (2015)—.74 Mendes et al. (2016)—.79 Salvador et al. (2019a, 2019b)—.86 Van Riper et al. (2018)—.75–.88 View Condition Impact Hsiao & Van Riper (2011)—.74 Lerret et al. (2015)—.58 Van Riper et al. (2018)—.68–.77 Note. ICR = internal consistency reliability. Range of ICR scores for two groups of parents included in secondary analysis, those with a child with Down syndrome and those with a child with a chronic physical condition. facing a health challenge. Although most researchers using et al., 2011). The scales measure different aspects of family the FaMM focused on family management of childhood management, with each scale addressing a different underlying chronic conditions, we identified several that used the FaMM latent construct. Despite the FaMM being described as com- to study family life in the context of an adult family member prising six separate scales with no total score and scoring who was living with their parents due to cognitive or physi- instructions available on the FaMM website (https://nursing. cal deficits (see, for example, Deatrick et al., 2018; Van unc.edu/research/office-of-research-support-and-consultation/ Riper et al., 2018). family-management-measure/), we found instances of investi- The review also provides evidence of the cross-cultural gators calculating a total score that was then used in their analy- applicability of the FMSF and FaMM with the first study ses. Such analyses are questionable, and we encourage anyone based on a sample from outside the United States conducted using the FaMM to adhere to scoring instructions. in Thailand (Athaseri et al., 2008). Cross-cultural applica- Across conditions and cultural contexts, most investiga- tions increased substantially after the publication of the tors have focused on examining the FMSF components FaMM and reports of its ICR support its applicability in mul- (Definition of the Situation, Management Behaviors, tiple cultural contexts. Not all authors reported the ICR data Perceived Consequences) and their underlying dimensions or for their sample. Doing so would help future investigators the FaMM scales, with less attention directed to identifying make informed decisions about the appropriateness of the patterns of family management, contextual influences, and measure for their intended sample. In addition to the ICR data outcomes. This focus is understandable given the design summarized in Table 4, Van Riper and colleagues’ (2020) complexity and resources needed to incorporate multiple analysis of the use of the FaMM with samples of parents of aspects of the framework into a single study. However, from individuals with Down syndrome from 11 countries spanning the outset the developers maintained that a strength of the North and South America, Europe, and Asia provides addi- framework was the emphasis on identifying patterns of fam- tional support for the measure’s broad applicability. ily management based on the configuration of the dimensions The items comprising the FaMM were grounded in the of family management across family members. Beginning FMSF, and the scales were identified using well-established with the first publication (Knafl & Deatrick, 1990), the frame- techniques for instrument development (DeVellis, 2003; Knafl work included influences on family management, and in the Knafl et al. 101 first revision (Knafl & Deatrick, 2003), family member and tailored interventions aimed at buttressing family manage- family system outcomes of family management were added. ment strengths and mitigating problematic aspects. Although recognizing it may not be feasible to include Sample design presents another opportunity for taking multiple aspects of the framework in a single study, we encour- full advantage of the FMSF by including multiple family age investigators focusing on selected aspects of the frame- members in the sample. Beginning with our initial conceptu- work to consider addressing those that have been less studied. alization (Knafl & Deatrick, 1990), we have emphasized the For example, contextual influences such as health insurance, value of including the perspectives of multiple family mem- access to specialty care, and family income could be included bers in studies addressing family management. Nonetheless, in the demographic and family information respondents often most investigators applying the framework or using the mea- are asked to provide and examined in the analysis as contex- sure have limited their sample to one family member, most tual influences on family management. Another possibility often the mother. The inclusion of multiple family members would be to add measures addressing social support or health in the sample provides researchers with the opportunity to care relationships to examine how these influence family man- undertake conceptually grounded, dyadic, or family system agement. The FMSF was based on syntheses of predominantly analyses examining the implications of family members hav- qualitative research addressing family response to childhood ing shared versus discrepant or conflicting views of family chronic conditions. The contextual influences included in the management (Deatrick et al., 2020). framework were based on study results reporting what family The focus of both the FMSF and FaMM is family manage- members identified as factors contributing to the ease or dif- ment within a single household and that focus is reflected in ficulty of family management. Although the contextual influ- the research applications to date. The contribution to condition ences included in the FMSF reflect issues recognized as social management of individuals outside the household is incorpo- determinants of health that are widely acknowledged as rated under the Social Network Contextual Influence. Yet to important to understanding structural impediments to families be addressed are those situations where members from multi- in managing health conditions, there are other factors that are ple households are actively involved in condition management recognized and could be included. Further attention to the as might be the case when divorced parents have shared cus- social determinants of health also calls for recognition and tody of a child or when extended family members assume study of issues such as racism that are now widely acknowl- major caregiving responsibilities. Additional studies are edged as important to explaining health disparities (Deatrick, needed to examine the unique challenges of multi-household 2017). Although recommending that researchers consider family management and factors supporting and hindering extending their study aims beyond the current focus on the effective, well-coordinated management across households. components and dimensions of family management, the body Like all scoping reviews, there were limitations to this of research addressing these provides an opportunity for one. We included only those studies published in English undertaking research syntheses of results reporting how the language journals. It is possible that our search missed rele- dimensions of family management are reflected across condi- vant publications, but we believe we minimized that possi- tions and cultures. bility by working closely with a research librarian to identify Qualitative data related to the dimensions of family man- relevant citations. The review was limited to research appli- agement and scores on the FaMM scales are the building cations because our initial screen of the reports revealed few blocks for identifying family management styles, and when clinical applications to date. Research reports often make investigators have these data, they can take the next step and recommendations related to practice applications and these extend their analysis to identifying different styles. By using provide a beginning point for clinicians to consider how the analytic approaches such as matrix display of qualitative data FMSF could guide practice or how the FaMM could be reflecting family management dimensions across families incorporated into clinical assessments. and quantitative cluster analyses based on the FaMM scales, investigators can identify styles of family management that Conclusion can be compared with those previously identified (Deatrick et al., 2018). Although full delineation of management styles, When we began developing the FMSF in the late 1980s, our requires a large enough sample to identify subgroups within objective was to provide researchers with a framework that the sample with similar patterns of family management, even would guide efforts to advance knowledge of family response with relatively small samples, investigators can undertake to childhood chronic conditions. Building on existing exploratory analyses to detect provisional management styles. research, we aimed to devise a framework that was applica- By identifying management styles and examining their rela- ble to multiple conditions and family structures. We believe tionship to family and family member outcomes, investiga- this review of research studies supports the conclusion that tors will have a better understanding of the management we achieved that goal. Over the years, others have applied approaches that put families and family members at risk for the framework to a much broader spectrum of conditions, poor outcomes. Understanding the implications of different populations, and cultural contexts than we originally antici- management styles also will contribute to the development of pated. We are grateful for their creative and innovative 102 Journal of Family Nursing 27(2) applications, which have contributed in important ways to of Neuroscience Nursing, 38(6), 422–427. https://doi. org/10.1097/01376517-200612000-00006 extending the scope of the FMSF. Bousso, R. S., Misko, M. D., Mendes-Castillo, A. M., & Rossato, In urging investigators to incorporate multiple aspects of L. M. (2012). Family Management Style Framework and its the FMSF into their studies and focus on the less developed use with families who have a child undergoing palliative care aspects of sociocultural context, management styles, and at home. Journal of Family Nursing, 18(1), 91–122. https://doi. outcomes, we recognize this often requires design trade-offs, org/10.1177/1074840711427038 especially regarding sampling. Trade-offs typically entail Caples, M., Martin, A. M., Dalton, C., & Marsh, L. (2018). balancing the ideal family research design with the reality of Adaptation and resilience in families of individuals with limited resources. For example, a decision to study dyads Down syndrome living in Ireland. British Journal of Learning leads to a decision to study fewer families or a statistical Disabilities, 46(3), 146–154. https://doi.org/10.1111/bld.12231 technique requiring a large sample size leads to a decision to Choi, H. (2015). Adaptation in families of children with Down recruit only one family member. Considering all aspects of syndrome: A mixed-methods design. Journal of Korean Academy of Nursing, 45(4), 501–512. https://doi.org/10.4040/ the FMSF when planning a study can help investigators eval- jkan.2015.45.4.501 uate various options related to their study aims and design Choi, H., & Van Riper, M. (2014). Maternal perceptions of sib- and contribute to making well-reasoned decisions about their ling adaptation in Korean families of children with Down syn- priorities for advancing knowledge of family management of drome. Journal of Intellectual Disability Research, 58(10), health-related challenges. 962–977. https://doi.org/10.1111/jir.12126 Close, S., Sadler, L., & Grey, M. (2016). In the dark: Challenges Acknowledgments of caring for sons with Klinefelter syndrome. Journal of The authors wish to thank University of North Carolina at Chapel Pediatric Nursing, 31(1), 11–20. https://doi.org/10.1016/j. Hill librarian Jamie Conklin for her expert input and support. pedn.2015.05.002 Cody, S. E., Sullivan-Bolyai, S., & Reid-Ponte, P. (2018). Making Declaration of Conflicting Interests a connection: Family experiences with bedside rounds in the intensive care unit. Critical Care Nurse, 38(3), 18–26. https:// The author(s) declared no potential conflicts of interest with respect doi.org/10.4037/ccn2018128 to the research, authorship, and/or publication of this article. Conlon, K. E., Strassle, C. G., Vinh, D., & Trout, G. (2008). Family management styles and ADHD: Utility and treatment implica- Funding tions. Journal of Family Nursing, 14(2), 181–200. https://doi. The author(s) received no financial support for the research, author- org/10.1177/1074840708315673 ship, and/or publication of this article. Deatrick, J. (2017). Where is "family" in the social determinants of health? Implications fo family nursing practice, research, edu- ORCID iDs cation, and policy. Journal of Family Nursing, 23(4), 423-433. https://doi.org/10.1177/1074840717735287 Kathleen A. Knafl https://orcid.org/0000-0003-2623-2515 Deatrick, J., Barakat, L. P., Knafl, G. J., Hobbie, W., Ogle, S., Janet A. Deatrick https://orcid.org/0000-0002-6447-3259 Ginsberg, J. P., Fisher, M. J., Hardie, T., Reilly, M., Broden, E., Toth, J., SanGiacomo, N., & Knafl, K. (2018). Patterns References of family management for adolescent and young adult brain Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards tumor survivors. Journal of Family Psychology, 32(3), 321– a methodological framework. International Journal of 332. https://doi.org/10.1037/fam0000352 Social Research Methodology, 8(1), 19–32. https://doi. Deatrick, J., Hobbie, W., Ogle, S., Fisher, M. J., Barakat, L., Hardie, org/10.1080/1364557032000119616 T., Reilly, M., Li, Y., & Ginsberg, J. P. (2014). Competence in Athaseri, S., Tilokskulchai, F., Patoomwan, A., Grey, M., Knafl, caregivers of adolescent and young adult childhood brain tumor K., & Suprasongsin, C. (2008). Understanding mothers of chil- survivors. Health Psychology, 33(10), 1103–1112. https://doi. dren with type 1 diabetes: An investigation of perspective and org/10.1037/a0033756 management. Thai Journal of Nursing Research, 12(1), 55–69. Deatrick, J. A., Knafl, G. J., Knafl, K., Hardie, T. L., Bressler, S., Bandura, A. (1997). Self-efficacy: The exercise of control. W. H. Hobbie, W., Bratton, K., Dominguez, M., Guzman, C., Rees Freeman. Papinsick, A., Voisine, S., & Barakat, L. P. (2020). Mothers’ Beacham, B. L., & Deatrick, J. (2015). Children with chronic and fathers’ views of family management and health-related conditions: Perspectives on condition management. Journal quality of life for young adult survivors of childhood brain of Pediatric Nursing, 30(1), 25–35. https://doi.org/10.1016/j. tumors. Journal of Psychosocial Oncology. Advance online pedn.2014.10.011 publication. https://doi.org/10.1080/07347332.2020.1844845 Beeber, A. S., & Zimmerman, S. (2012). Adapting the Family DeVellis, R. (2003). Scale development: Theory and applications Management Style Framework for families caring for older (2nd ed). SAGE. adults with dementia. Journal of Family Nursing, 18(1), 123– Duangdech, W., Patoomwan, A., Pookboonmee, R., Orathai, P., & 145. https://doi.org/10.1177/1074840711427144 Rehm, R. S. (2017). A causal model of health status of chil- Bingham, V., & Habermann, B. (2006). The influence of spiritu- dren with cerebral palsy. Pacific Rim International Journal of ality on family management of Parkinson’s disease. Journal Nursing Research, 21(4), 291–304. Knafl et al. 103 Edwards-Beckett, J., & Cedargren, D. (1995). The sociocultural Hsiao, C. Y. (2014). Family demands, social support and family context of families with a child with myelomeningocele. Issues functioning in Taiwanese families rearing children with Down in Comprehensive Pediatric Nursing, 18(1), 27–42. https://doi. syndrome. Journal of Intellectual Disability Research, 58(6), org/10.3109/01460869509080955 549–559. https://doi.org/10.1111/jir.12052 Estrem, H. H., Pados, B. F., Park, J., Knafl, K., & Thoyre, S. M. Hsiao, C. Y., & Van Riper, M. (2011). Individual and family adap- (2017). Feeding problems in infancy and early childhood: tation in Taiwanese families living with Down syndrome. Evolutionary concept analysis. Journal of Advanced Nursing, Journal of Family Nursing, 17(2), 182–201. https://doi. 73(1), 56–70. https://doi.org/10.1111/jan.13140 org/10.1177/1074840711405205 Fleming, L., Knafl, K., Knafl, G., & Van Riper, M. (2017). Parental Im, Y. J., Cho, Y., & Kim, D. H. (2019). Family management style management of adrenal crisis in children with congenital adre- as a mediator between parenting stress and quality of life of nal hyperplasia. Journal for Specialists in Pediatric Nursing, children with epilepsy. Journal of Pediatric Nursing, 45, e73– 22(4), e12190. https://doi.org/10.1111/jspn.12190 e78. https://doi.org/10.1016/j.pedn.2018.12.007 Fleming, L., Knafl, K., & Van Riper, M. (2017). How the child’s Ireys, H. T., Chernoff, R., Stein, R. E. K., DeVet, K. A., & Silver, gender matters for families having a child with congenital adre- E. J. (2001). Outcomes of community-based family-to-family nal hyperplasia. Journal of Family Nursing, 23(4), 516–533. support: Lessons learned from a decade of randomized trials. https://doi.org/10.1177/1074840717735499 Children's Services: Social Policy, Research, and Practice, 4, Gallo, A. (1990). Family management style in juvenile diabetes: 203-216. https://doi.org/10.1207/S15326918CS0404_04 A case illustration. Journal of Pediatric Nursing, 5(1), 23–32. Johnson, N., Bree, O., Lalley, E. E., Rettler, K., Grande, P., Gani, https://doi.org/10.5555/uri:pii:088259639090049F M. O., & Ahamed, S. I. (2014). Effect of a social script iPad Gallo, A., Angst, D. B., & Knafl, K. (2009). Disclosure of application for children with autism going to imaging. Journal genetic information within families. American Journal of Pediatric Nursing, 29(6), 651–659. https://doi.org/10.1016/j. of Nursing, 109(4), 65–69. https://doi.org/10.1097/01. pedn.2014.04.007 NAJ.0000348607.31983.6e Kazak, A., Kassam-Adams, N., Schneider, S., Zelikovsky, N., Gallo, A., Angst, D. B., Knafl, K., Hadley, E., & Smith, C. (2005). Alderfer, M. A., & Rourke, M. (2006). An integrative model Parents sharing information with their children about genetic of pediatric medical traumatic stress. Journal of Pediatric conditions. Journal of Pediatric Health Care, 19(5), 267–275. Psychology, 31(4), 343–355. https://doi.org/10.1093/jpepsy/ https://doi.org/10.1016/j.pedhc.2005.05.008 jsj054 Geense, W. W., Gaal, B. V., Knoll, J. L., Maas, N. M., Kok, G., Kim, D. H., & Im, Y. J. (2015). The influence of family manage- Cornelissen, E. A. M., & Nijhuis-van der Sanden, M. W. G. ment style on psychosocial problems of childhood cancer (2018). Effect and process evaluation of e-powered parents, survivors in Korea. European Journal of Oncology Nursing, a web-based support program for parents of children with a 19(2), 107–112. https://doi.org/10.1016/j.ejon.2014.10.010 chronic kidney disease: Feasibility randomized controlled trial. Kim, I., Ekas, N. V., & Hock, R. (2016). Associations between Journal of Medical Internet Research, 20(8), e245. https://doi. child behavior problems, family management, and depres- org/10.2196/jmir.9547 sive symptoms for mothers of children with autism spectrum Gibson-Young, L., Turner-Henson, A., Gerald, L. B., Vance, D. E., disorder. Research in Autism Spectrum Disorders, 26, 80–90. & Lozano, D. (2014). The relationships among family man- https://doi.org/10.1016/j.rasd.2016.03.009 agement behaviors and asthma morbidity in maternal caregiv- Knafl, K., Breitmayer, B., Gallo, A., & Zoeller, L. (1996). Family ers of children with asthma. Journal of Family Nursing, 20(4), response to childhood chronic illness: Description of manage- 442–461. https://doi.org/10.1177/1074840714552845 ment styles. Journal of Pediatric Nursing, 11(5), 315–326. Hackworth, N. J., Matthews, J., Burke, K., Petrovic, Z., Klein, B., https://doi.org/10.1016/S0882-5963(05)80065-X Northam, E. A., Kyrios, M., Chiechomski, L., & Cameron, F. Knafl, K., Darney, B. G., Gallo, A., & Angst, D. B. (2010). Parental J. (2013). Improving mental health of adolescents with type perceptions of the outcome and meaning of normalization. 1 diabetes: Protocol for a randomized controlled trial of the. Research in Nursing and Health, 33(2), 87–98. https://doi. Nothing ventured nothing gained online adolescent and par- org/10.1002/nur.20367 enting support intervention. BMC Public Health, 13(1), Article Knafl, K., & Deatrick, J. (1990). Family management style: Concept 1185. https://doi.org/10.1186/1471-2458-13-1185 analysis and development. Journal of Pediatric Nursing, 5(1), Hickey, L., Anderson, V., Hearps, S., & Jordan, B. (2018). Family 4–14. forward: A social work clinical trial promoting family adapta- Knafl, K., & Deatrick, J. (2003). Further refinement of the Family tion following paediatric acquired brain injury. Brain Injury, Management Style Framework. Journal of Family Nursing, 32(7), 867–878. https://doi.org/10.1080/02699052.2018.1466 9(3), 232–256. https://doi.org/10.1177/1074840703255435 195 Knafl, K., Deatrick, J., Gallo, A., Dixon, J., Grey, M., Knafl, G., & Hobbie, W. L., Ogle, S., Reilly, M., Barakat, L., Lucas, M. S., O’Malley, J. (2011). Assessment of the psychometric proper- Ginsberg, J. P., Fisher, M. J., Volpe, G. M., & Deatrick, J. ties of the Family Management Measure. Journal of Pediatric A. (2010). Adolescent and young adult survivors of child- Psychology, 36(5), 494–505. https://doi.org/10.1093/jpepsy/ hood brain tumors: Life after treatment in their own words. jsp034 Cancer Nursing, 39(2), 134–143. https://doi.org/10.1097/ Knafl, K., Deatrick, J., & Havill, N. L. (2012). Continued devel- ncc.0000000000000266 opment of the Family Management Style Framework. Hopkins, A., & Gallo, A. (2012). Mothers’ perception of family Journal of Family Nursing, 18(1), 11–34. https://doi. and school life when their children have a chronic condition. org/10.1177/1074840711427294 International Journal of Clinical Pediatrics, 1(4–5), 97–102. Knafl, K., Deatrick, J., Knafl, G. J., Gallo, A. M., Grey, M., & Dixon, J. (2013). Patterns of family management of childhood https://doi.org/10.4021/ijcp54w 104 Journal of Family Nursing 27(2) chronic conditions and their relationship to child and family Mendes-Castillo, A. M. C., Bousso, R. S., & Silva, L. R. (2014). functioning. Journal of Pediatric Nursing, 28(6), 523–535. Family management for transplantation children patients with https://doi.org/10.1016/j.pedn.2013.03.006 grandparents as caregivers: A case study. Online Brazilian Koplow, S. M., Gallo, A., Knafl, K., Vincent, C., Paun, O., & Gruss, Journal of Nursing, 13(4), 667–676. V. (2015a). A case study approach to nursing home place- Misko, M. D., & Bousso, R. S. (2007). Managing cancer and its ment: Smooth and difficult cases and implications for nursing. intercurrences: The family deciding to seek emergency care for Journal of Gerontological Nursing, 41(7), 58–64. https://doi. the child. Revista Latino-Americana de Enfermagem, 15(1), org/10.3928/00989134-20150413-08 48–54. https://doi.org/10.1590/s0104-11692007000100008 Koplow, S. M., Gallo, A., Knafl, K., Vincent, C., Paun, O., & Murphy, K. M. (1990). Interactional styles of parents following the Gruss, V. (2015b). Family caregivers define and manage the birth of a high-risk infant. Journal of Pediatric Nursing, 5(1), nursing home placement process. Journal of Family Nursing, 33–41. 21(3), 469–493. https://doi.org/10.1177/1074840715571365 Muscara, F., Burke, K., McCarthy, M. C., Anderson, V. A., Hearps, Krouse, A. M. (2002). The family management of breastfeeding S. J. C., Dimovski, A., & Nicholson, J. M. (2015). Parent distress low birth weight infants. Journal of Human Lactation, 18(2), reactions following a serious illness or injury in their child: A pro- 155–165. https://doi.org/10.1177/089033440201800207 tocol paper for the take a Breath Cohort Study. BMC Psychiatry, Lerret, S. M., Weiss, M. E., Stendahl, G. L., Chapman, S., Menendez, 15(1), Article 153. https://doi.org/10.1186/s12888-015-0519-5 J., Williams, L., Nadler, M. L., Neighbors, K., Amsden, K., Obrecht, J. A., Gallo, A., & Knafl, K. A. (1992). A case illustra- Cao, Y., Nugent, M., Alonso, E. M., & Simpson, P. (2015). tion of family management style in childhood end stage renal Pediatric solid organ transplant recipients: Transition to home disease. ANNA Journal, 19(3), 255–259. and chronic illness care. Pediatric Transplantation, 19(1), Quast, L. F., Phillips, P. C., Li, Y., Kazak, A. E., Barakat, L. P., & 118–129. https://doi.org/10.1111/petr.12397 Hocking, M. C. (2018). A prospective study of family predic- Lindsey, B. (2016). Therapeutic camps and their impact on the fam- tors of health-related quality of life in pediatric brain tumor ily of children with special health care needs: A mixed method survivors. Pediatric Blood & Cancer, 65(6), e26976. https:// study. Open Journal of Nursing, 6(9), 722–740. https://doi. doi.org/10.1002/pbc.26976 org/10.4236/ojn.2016.69074 Quast, L. F., Turner, E. M., McCurdy, M. D., & Hocking, M. C. Lohan, A., Morawska, A., & Mitchell, A. (2017). Associations (2016). Health-related quality of life in parents of pediatric between parental factors and child diabetes-management- brain tumor survivors at the end of tumor-directed therapy. related behaviors. Journal of Developmental and Behavioral Journal of Psychosocial Oncology, 34(4), 274–290. https://doi. Pediatrics, 38(5), 330–338. https://doi.org/10.1097/DBP. org/10.1080/07347332.2016.1175535 0000000000000447 Raymond, K. Y., Willis, D., & Sullivan-Bolyai, S. (2017). Parents McCarthy, S. M., & Gallo, A. (1992). A case illustration of fam- caring for adult children with serious mental illness. Journal of ily management style. Journal of Pediatric Nursing, 7(6), the American Psychiatric Nurses Association, 23(2), 119–132. 395–402. https://doi.org/10.1177/1078390316685404 McCubbin, M., & McCubbin, H. (1993). Families, health & illness: Rayner, M., Muscara, F., Dimovski, A., McCarthy, M. C., Yamada, Perspectives on coping and intervention. In C. B. Danielson, B. J., Anderson, V. A., Burke, K., Walser, R., & Nicholson, Hamel-Bissell, & P. Winstead-Fry (Eds.), Families coping with J. M. (2016). Take A Breath: Study protocol for a random- illness: The Resiliency Model of Family Stress, Adjustment, ized controlled trial of an online group intervention to reduce and Adaptation (pp. 21–63). Mosby. traumatic stress in parents of children with a life-threatening Mendes, T. P., Crespo, C. A. M., & Austin, J. K. (2016). Family illness or injury. BMC Psychiatry, 16, Article 169. https://doi. cohesion and adaptation in pediatric chronic conditions: The org/10.1186/s12888-016-0861-2 missing link of the family’s condition management. Journal Rearick, E. M., Sullivan-Bolyai, S., Bova, C., & Knafl, K. of Child and Family Studies, 25(9), 2820–2831. https://doi. (2011). Parents of children newly diagnosed with type 1 org/10.1007/s10826-016-0447-0 diabetes: Experiences with social support and family man- Mendes, T. P., Crespo, C. A. M., & Austin, J. K. (2017). The psy- agement. Diabetes Educator, 37(4), 508–518. https://doi. chological costs of comparisons: Parents’ social comparison org/10.1177/0145721711412979 moderates the links between family management of epilepsy Rempel, G. R., Blythe, C., Rogers, L. G., & Ravindran, V. (2012). and children’s outcomes. Epilepsy & Behavior, 75, 42–49. The process of family management when a baby is diagnosed https://doi.org/10.1016/j.yebeh.2017.07.017 with a lethal congenital condition. Journal of Family Nursing, Mendes-Castillo, A. M. C., Bousso, R. S., dos Santos, M. R., & 18(1), 35–64. https://doi.org/10.1177/1074840711427143 Damiao, E. B. C. (2012). Family management styles: A pos- Salvador, Á., Crespo, C., & Barros, L. (2019a). Family manage- sibility of evaluation in pediatric liver transplant. Acta Paulista ment of pediatric cancer: Links with parenting satisfaction de Enfermagem, 25(6), 867–872. https://doi.org/10.1590/ and psychological distress. Family Process, 58(3), 761–777. s0103-21002012000600007 https://doi.org/10.1111/famp.12379 Mendes-Castillo, A. M. C., Bousso, R. S., Ichikawa, C. R. D., & Salvador, Á., Crespo, C., & Barros, L. (2019b). Parents’ psycho- Silva, L. R. (2014). The use of the Family Management Style logical well-being when a child has cancer: Contribution of Framework to evaluate the family management of liver trans- individual and family factors. Psycho-Oncology, 28(5), 1080– plantation in adolescence. Revista da Escola de Enfermagem 1087. https://doi.org/10.1002/pon.5057 da USP, 48(3), 430–437. https://doi.org/10.1590/s0080- Sananreangsak, S., Lapvongwatanal, P., Virutsetazin, K., 623420140000300007 Vatanasomboon, P., & Gaylord, N. (2012). Predictors of family Knafl et al. 105 management behavior for children with thalassemia. The Southeast Van Riper, M., Knafl, G., Roscigno, C., & Knafl, K. (2018). Family Asian Journal of Tropical Medicine and Public Health, 43(1), 160– management of childhood chronic conditions: Does it make a 171. difference if the child has an intellectual disability? American SanGiacomo, N., Toth, J., Hobbie, W., Broden, E., Ver Hoeve, Journal of Medical Genetics—Part A, 176(1), 82–91. https:// E., Knafl, K., Barakat, L., Ogle, S., & Deatrick, J. A. (2019). doi.org/10.1002/ajmg.a.38508 Challenges to family management for caregivers of adolescent Verchota, G., & Sawin, K. J. (2016). Testing components of a and young adult survivors of childhood brain tumors. Journal self-management theory in adolescents with type 1 diabe- of Pediatric Oncology Nursing, 36(6), 402–412. https://doi. tes mellitus. Nursing Research, 65(6), 487–495. https://doi. org/10.1177/1043454219844229 org/10.1097/NNR.0000000000000180 Sheng, N., Ma, J., Ding, W., & Zhang, Y. (2018). Family man- Weissheimer, G., Mazza, V. D. A., Lima, V. F. D., Mantovani, agement affecting transition readiness and quality of life of M. D. F., Freire, M. H. D. S., & Guimarães, P. R. B. (2018). Chinese children and young people with chronic diseases. Relationship of family management with sociodemographic Journal of Child Health Care, 22(3), 470–485. https://doi. aspects and children’s physical dependence in neurologi- org/10.1177/1367493517753712 cal disorders. Revista Latino-Americana de Enfermagem, 26, Son, H. K., Kim, D. H., Lee, H., Kim, H., Chung, K., & Kim, H. e3076. https://doi.org/10.1590/1518-8345.2494.3076 S. (2018). Family management of childhood atopic dermatitis. Wiegand, D. L. (2012). Family management after the sudden death Journal of Advanced Nursing, 74(6), 1371–1379. https://doi. of a family member. Journal of Family Nursing, 18(1), 146– org/10.1111/jan.13551 163. https://doi.org/10.1177/1074840711428451 Son, H. K., Song, H. B., & Kim, D. H. (2018). Effects of the mother- Wiegand, D. L., Deatrick, J. A., & Knafl, K. (2008). Family manage- medical staff partnership on mothers’ condition management ment styles related to withdrawal of life-sustaining therapy from ability for children with chronic allergic diseases. Child Health adults who are acutely ill or injured. Journal of Family Nursing, Nursing Research, 24(1), 101–108. https://doi.org/10.4094/ 14(1), 16–32. https://doi.org/10.1177/1074840707313338 chnr.2018.24.1.101 Williams, J. K. (1995). Parenting a daughter with precocious puberty Sullivan-Bolyai, S., Crawford, S., Johnson, K., Ramchandani, N., or Turner syndrome. Journal of Pediatric Health Care, 9(3), Quinn, D., D’Alesandro, B., Stern, K., Lipman, T., Melkus, 109–114. https://doi.org/10.1016/S0891-5245(05)80018-5 G., & Streisand, R. (2016). PREP-T1 (Preteen Re-Education Wirattanapokin, S., Manderson, L., & Markovic, M. (2013). Self- with Parents–Type 1 Diabetes) feasibility intervention results. management styles of Thai adolescents with pre-diabetes and Journal of Family Nursing, 22(4), 579–605. https://doi. type 2 diabetes. Journal of Health Research, 27(6), 345–350. org/10.1177/1074840716676589 Wollenhaupt, J., Rodgers, B., & Sawin, K. J. (2012). Family man- Swallow, V., Knafl, K., Santacroce, S., Hall, A., Smith, T., Campbell, agement of a chronic health condition: Perspectives of adoles- M., & Webb, N. J. (2012). The online parent information and cents. Journal of Family Nursing, 18(1), 65–90. https://doi. support project, meeting parents’ information and support needs org/10.1177/1074840711427545 for home-based management of childhood chronic kidney dis- Young, L. (2013). The family experience following bone marrow ease: Research protocol. Journal of Advanced Nursing, 68(9), or blood cell transplantation. Journal of Advanced Nursing, 2095–2102. https://doi.org/10.1111/j.1365-2648.2011.05908.x 69(10), 2274–2284. https://doi.org/10.1111/jan.12111 Toly, V. B., & Musil, C. M. (2015). Factors related to depressive Zhang, Y., Wei, M., Han, H. R., Zhang, Y., & Shen, N. (2013). Testing symptoms in mothers of technology-dependent children. Issues the applicability of the Family Management Style Framework in Mental Health Nursing, 36(7), 518–527. https://doi.org/10.3 to Chinese families. Western Journal of Nursing Research, 109/01612840.2015.1009662 35(7), 920–942. https://doi.org/10.1177/0193945913482051 Toly, V. B., Musil, C. M., & Carl, J. C. (2012a). Families with chil- Zhang, Y., Wei, M., Shen, N., & Zhang, Y. (2015). Identifying fac- dren who are technology dependent: Normalization and fam- tors related to family management during the coping process ily functioning. Western Journal of Nursing Research, 34(1), of families with childhood chronic conditions: A multi-site 52–71. https://doi.org/10.1177/0193945910389623 study. Journal of Pediatric Nursing, 30(1), 160–173. https:// Toly, V. B., Musil, C. M., & Carl, J. C. (2012b). A longitudi- doi.org/10.1016/j.pedn.2014.10.002 nal study of families with technology-dependent children. Zhang, Y., Wei, M., Zhang, Y., & Shen, N. (2014). Chinese family Research in Nursing and Health, 35(1), 40–54. https://doi. management of chronic childhood conditions: A cluster analy- org/10.1002/nur.21454 sis. Journal for Specialists in Pediatric Nursing, 19(1), 39–53. Van Riper, M. (2005). Genetic testing and the family. Journal https://doi.org/10.1111/jspn.12046 of Midwifery Women’s Health, 50(3), 227–233. https://doi. Zhang, Y., Wei, M., Zhang, Y., & Shen, N. P. (2013). Impact org/10.1016/j.jmwh.2005.02.008 of family management on family functioning of families Van Riper, M., Knafl, G., Barbieri-Figueiredo, M. D. C., Caples, with chronically ill children. Journal of Shanghai Jiaotong M., Choi, H., de Graaf, G., Duarte, E. D., Honda, J., Marta, University, 33, 531–537. https://doi.org/10.3969/j.issn.1674- E., Phetrasuwan, S., Alfieri, S., Angelo, M., Deoisres, W., 8115.2013.05.002 Fleming, L., Dos Santos, A. S., Rocha da Silva, M. J., Skelton, B., van der Veek, S., & Knafl, K. A. (2020). Measurement Author Biographies of family management in families of individuals with Down syndrome: A cross-cultural investigation. Journal of Kathleen A. Knafl, PhD, FAAN, is a professor, School of Nursing, Family Nursing. Advance online publication. https://doi. University of North Carolina at Chapel Hill, Chapel Hill, North org/10.1177/1074840720975167 Carolina, USA. Her current research focuses on family management 106 Journal of Family Nursing 27(2) of childhood chronic conditions, including the development of the Agatha M. Gallo, PhD, RN, FAAN, is a Professor Emerita in the Family Management Style Framework and the Family Management Department of Human Development Nursing Science at the Measure (FaMM). She is a member of editorial board of the Journal University of Illinois at Chicago, College of Nursing, Chicago, of Family Nursing and the Board of Directors of the International USA. She has focused her research on family response to childhood Family Nursing Association. Recent publications include chronic conditions, families of children with a genetic condition, “Understanding Familial Response to Parental Advanced Cancer developing and implementing a web-based reproductive health Using the Family Management Style Framework” in Journal of educational intervention for young adults with sickle cell disease or Psychosocial Oncology (2019, with E. Park & K. Miller), ”Tips for sickle cell trait, and identifying the experiences and quality of life Developing a Successful Family Research Proposal” in Journal of of recipients with sickle cell disease and their donors in allogeneic Family Nursing (2017, with M. Van Riper), and “Family Management hematologic stem cell transplantation. She currently is a co-investi- of Childhood Chronic Conditions: Does It Make a Difference If the gator on a study to develop and pilot test a web-based decision aid Child Has an Intellectual Disability?” in American Journal of to assist parental disclosure to their child(ren) about their donor- Medical Genetics Part A (2017, with G. Knafl, C. Roscigno, & M. conception origins to prepare for a large-scale efficacy trial. Recent Van Riper). publications include “The Experience of Adults With Sickle Cell Disease and Their HLA-Matched Adult Sibling Donors After Janet A. Deatrick, PhD, RN, FAAN, is Professor Emerita of Allogeneic Hematopoietic Stem Cell Transplantation” in Journal of Nursing, University of Pennsylvania in Philadelphia, Pennsylvania, Advanced Nursing (2019, with A. M. Gallo et al.), “Health-Related USA. Her research focuses on family response to childhood chronic Quality of Life and Personal Life Goals of Adults With Sickle Cell conditions, including families of young adults who survived child- Disease After Allogeneic Hematopoietic Stem Cell Transplantation” hood brain tumors. She is currently developing and implementing in Western Journal of Nursing Research (2019, with A. M. Gallo Training in Problem Solving (TIPS) for Caregivers of Young Adult et al.), and “Reproductive Health CHOICES for Young Adults Survivors of Childhood Brain Tumor Survivors, a web-based, With Sickle Cell Disease or Trait: Randomized Controlled Trial coach-assisted, psychosocial intervention for their maternal pri- Outcomes Over Two Years” in Journal of Genetic Counseling mary caregivers who are at risk. She currently is a principal investi- (2015, with A. M. Gallo et al.). gator on a study to randomize an additional 20 mothers (10 TIPS intervention; 10 Enhanced Usual Care) to TIPS and assess the facil- Beth Skelton, RN, MSN, CPNP-PC, is a PhD candidate at the itators and barriers to implementing TIPS in a Hybrid Type 1 University of North Carolina at Chapel Hill under advisors Dr. Effectiveness-Implementation Design. Recent publications include Marcia Van Riper and Dr. Kathleen Knafl. Her dissertation research “Mothers’ and Fathers’ Views of Family Management and Health- was designed to investigate care coordination needs of families of Related Quality of Life for Young Adult Survivors of Childhood children with Down and the development of a mobile health appli- Brain Tumors” in Journal of Psychosocial Oncology (2020, with G. cation to support parents’ care coordination efforts. She is a co- J. Knafl et al.), “Engaging With the Community to Promote Physical investigator on a study investigating family adaptation of families Activity in Urban Neighborhoods” in American Journal of Health of children with congenital heart disease and Down syndrome. Promotion (2019, with H. Klusaritz et al.), and “Patterns of Family Recent publications include “Measurement of Family Management Management for Adolescent and Young Adult Brain Tumor in Families of Individuals With Down Syndrome: A Cross-Cultural Survivors” in Journal of Family Psychology (2018, with L. P. Investigation” in Journal of Family Nursing (2020, with M. Van Barakat et al.). Riper et al.).

Journal

Journal of Family Nursing – SAGE

Published: Mar 20, 2021

Keywords: family research; family management; scoping review

Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

Tracing the Use of the Family Management Framework and Measure: A Scoping Review:

Tracing the Use of the Family Management Framework and Measure: A Scoping Review:

Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

Tracing the Use of the Family Management Framework and Measure: A Scoping Review:

Tracing the Use of the Family Management Framework and Measure: A Scoping Review:

References (196)

Abstract

Journal

Recommended Articles

There are no references for this article.

Our policy towards the use of cookies