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Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden

Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden The aim of this study was to describe experiences of peer support among mothers of children with congenital heart defects. Ten mothers were interviewed through a semi-structured approach and interviews were analyzed with systematic text condensation. The respondents established various channels used for peer support and navigated between the channels depending on what type of information or support they needed. Through the channels, they found peers they developed strong friendships with and who they relied on for emotional support. Communicating with peers involved the reciprocal exchange of unique emotional support between peers who understand each other as well as the exchange of information derived from their collective knowledge, and thus, difficult to find without the help of peers. The findings illustrate the potential strengths of establishing reliable collaboration and liaisons between clinical units and peer support networks. Keywords family caregivers, family/participant group, qualitative, research methodology/design, congenital heart defects, parents, peer support, social support Congenital heart defects include a wide range of structural One way to receive social support is from a person with birth defects involving the heart and the neighboring blood experience of a similar situation, often referred to as peer vessels, with a significant variability in medical severity and support. A defining feature of peer support is that lived expe- prognosis. The incidence of severe congenital heart defects rience is utilized when providing emotional support (Watson, requiring expert medical treatment is between 0.4 and 2.3 per 2019). Indeed, empirical research reports that parents of chil- 1,000 live births (Miranović, 2016), and is increasing glob- dren with congenital heart defects articulate a need for peer ally (Liu et al., 2019), illustrating the importance of prenatal support (Bruce et al., 2014), and parents of children with and postnatal screening routines (Ewer, 2014; Lytzen et al., birth defects often establish distance-spanning or face-to- 2019). When a diagnosis is established, parents are faced face networks to communicate with peers (Hall et al., 2015). with an unfamiliar and frightening situation resulting in con- Limited research suggests that peer support between parents siderable psychological distress, trauma reactions, and of children with congenital heart defects has the potential to impaired quality of life (Bratt et al., 2019; Franich-Ray et al., result in emotional validation, reassurance, problem-solving, 2013; Sood et al., 2018). Following the diagnosis, parents are and increased preparedness for future situations (Gramszlo confronted with a complex situation where their own inter- et al., 2020). ests and social activities are downgraded in favor of structur- While several networks for peer support exist for parents ing the daily life around their child (Bruce et al., 2014). Some of children with congenital heart defects, few studies have studies suggest that social support decreases the impact a congenital heart defect may have on the psychosocial situa- The Department of Women’s and Children’s Health, Uppsala University, tion for families and can be a predictor of psychological cop- Uppsala, Sweden ing among parents of children with congenital heart defects The Swedish Red Cross University College, Huddinge, Sweden (Wei et al., 2015). Thus, social support may predict psycho- 3 Ersta Sköndal Bräcke University College, Stockholm, Sweden logical health among parents and is an important factor to Corresponding Author: consider in pediatric cardiac care. However, the same review Tommy Carlsson, Department of Women’s and Children’s Health, concludes a need for more qualitative research that explores Uppsala University, Akademiska sjukhuset, Uppsala 75185, Sweden. the experiences and care needs of these parents. Email: tommy.carlsson@kbh.uu.se Carlsson and Mattsson 143 explored the psychosocial effects that these parents experi- Table 1. Sample Characteristics (n = 10 Respondents). ence when communicating with peers. In general, peer sup- Characteristic n port between parents has the potential to offer informational and emotional affirmations that can supplement other types Age of respondents (years) of professional support (Niela-Vilén et al., 2014). More spe- 30–39 5 cifically, peer support among parents of children with dis- 40–49 3 abilities can result in shared social identities, mutual 50–59 2 exchanges of information, personal growth, and reciprocal Age of child (years) benefits related to communicating support to others (Shilling ≤3 3 4–12 5 et al., 2013). However, evidence is limited regarding peer 13–18 1 support for parents of children with congenital heart defects >18 1 and more empirical research is needed to draw conclusions Educational level about this population. Taken together, information on par- High school 2 ents’ perceptions of social support during their child’s dis- College or university 8 ease trajectory could broaden our understanding of how to Time of diagnosis improve pediatric cardiac care. The understanding of par- Prenatal 2 ents’ experiences and needs is imperative for health care pro- Postnatal 8 viders to be able to formulate and implement appropriate interventions (Wei et al., 2015). Sample Aim The respondents were recruited by means of convenience The aim of this study was to describe experiences of peer sampling via ads published in two closed Facebook groups support among mothers of children with congenital heart for parents of children with congenital heart defects (approx- defects. imately 900 and 100 members, respectively) and in a news- letter from the national association Hjärtebarnsfonden. One mother of a child with a congenital heart defect, who was Method identified from the clinical network of one of the authors, Study Design facilitated access to these closed peer support groups. This parent was a member of both Facebook groups and posted This was a qualitative and exploratory study utilizing an messages in each group containing invitations to participate inductive approach. Swedish mothers of children with con- in the study. Administrators in the national association genital heart defects were interviewed about their experi- aided in providing information in newsletters. Initially, ences of participating in peer support activities, focusing on respondents participated in an online survey exploring experienced benefits and psychosocial consequences related experiences of peer support through written open-ended to receiving as well as providing the support. questions, the results of which are reported elsewhere (n = 61 participants in the initial survey; Carlsson et al., 2020). After having submitted their responses in the survey, Setting respondents were asked whether they were interested in participating in this interview study. Eleven mothers and This study was conducted in Sweden, where children with none of the fathers participating in the survey expressed an congenital heart defects are provided care at state-run hos- interest in participating in a follow-up interview. Inclusion pitals, primarily via pediatric cardiology units. In addition criteria were that the respondents needed to be a parent of a to medical care, families are offered psychosocial support living child with a congenital heart defect and that they provided by nurses, social workers/counselors, and psy- needed to have experience of participating in either online/ chologists. One national association devoted to children distance-spanning or face-to-face peer support activities. with congenital heart defects and their family members is When contacted, one mother did not respond to phone calls located in Sweden and offers emotional and economic sup- or emails. Thus, 10 mothers constitute the final sample in port to its members (Swedish: Hjärtebarnsfonden). The this study. organization arranges regional as well as national peer The age of the respondents ranged from 30 to 51 years, support activities, including camps where families can with a median age of 40 years. One had two children, whereas meet peers with similar experiences and circumstances. In the remaining mothers had one child diagnosed with con- addition to these activities, parents may also decide to par- genital heart defects. All children (n = 11) had undergone ticipate in online communities, mainly accessed and man- cardiac surgery. Nine had experience of peer communication aged on the social networking platform Facebook. 144 Journal of Family Nursing 28(2) Table 2. Semi-Structured Interview Guide. Main questions Subquestions What is your experience of being part of How did you experience the contact with the association? the patient association after your child What has the contact with the association meant for you during the pregnancy and after had been diagnosed with a congenital your child was born? heart defect? What has the contact with the association meant for your family? What is your experience of getting in In what ways have you had contact with and received support from other parents? touch with other parents who have What has it meant to you to have contact with other parents of children with congenital experience of having a child with a heart defects? congenital heart defect? How have you experienced the support that the parents have given you during the pregnancy and after the birth of your child? When was the support especially valuable? Can you please give some examples of positive experiences related to the support? Can you please give some examples of negative experiences related to the support? What experiences do you have of being What has it meant for you to provide the support? the one who provides support to In the future, would you like to provide support to other parents who have recently parents who find out that their child learned that their child has a congenital heart defect? has a congenital heart defect? via the internet, eight had experience of peer support via the identified, portraying the general impression of the experi- national association, seven had experience of face-to-face ences described by the respondents. The following steps peer interactions, and three had participated in peer support involved identification of meaning units, which were sorted via telephone. Table 1 presents sample characteristics. into code groups and subgroups illustrating decontextual- ized collections of units sharing a similar content. The code groups and subgroups were inspired by the preliminary Data Collection themes. Condensations were then constructed, defined as The interviews were conducted via telephone and with the artificial quotations written in first-person format and based aid of a semi-structured interview guide (Table 2). The last on the identified code groups. The analyst then rewrote the author, who is a professor, a pediatric nurse, and a midwife condensations as reconceptualized descriptions illustrating with previous experience of performing research inter- a cross-case synthetization written in third-person format, views, conducted the interviews. At the start of each inter- and formulated category headings of each code group, por- view, informed consent was confirmed verbally. The traying the most significant findings within each of the code respondents were encouraged to elucidate their responses groups. In total, three category headings were identified and follow-up questions were used to promote rich descrip- during this stage. tions. All interviews were audio recorded and transcribed The first author performed the analysis, a male specialist verbatim in Swedish. Collectively, the transcribed inter- nurse, registered midwife, and researcher with previous views resulted in 117 pages (1.5 line spacing and 12 font experience of conducting qualitative analysis including sys- size, Times New Roman) including a total of 50,437 words. tematic text condensation. The organization of meaning The mean interview length was 39 min (median: 36; range: units, code groups, and subgroups was managed with Nvivo 17–68). for Mac. No automation tools or functions were used in the analysis. Analysis Ethical Considerations The interviews were analyzed with systematic text conden- sation, an exploratory qualitative method for thematic cross- Respondents provided informed consent to participate after case analysis. Systematic text condensation is a qualitative receiving written and oral information about the study. All descriptive approach, focusing on what the respondents are participants had the option to decline participation at any describing rather than interpreting underlying meanings given time without the need for explanation. Only research- (Malterud, 2012). The analysis involves steps used to iden- ers actively involved in the study had access to the raw data. tify and group significant findings in an iterative process. The study received ethical approval by The Regional Ethical Initially, all transcripts were read in a successive manner, Review Board in Uppsala, Sweden (Approval Number: keeping an open mind while reading. After this initial 2016/366). No monetary or other incentives for participation perusal of the transcripts, preliminary themes (n = 7) were were provided. Carlsson and Mattsson 145 with my dear child, can you help me” or “give me tips and Findings advice” or things like that. Nothing of that nature, but rather Establishing and Navigating Through Peer [the local association] only really acts as an advertisement setting for information about activities and the work of the Communication by Participating in Channels association. (Mother 7, 45 years old) Serving Different Purposes The first category heading concerns the methods that the Several respondents described an absence of fathers in mothers utilized to establish and navigate peer support chan- online communities. Fathers were indeed members in the nels. Overall, peer support was regarded as very important groups and read messages posted by others, but infrequently for the mothers, especially among those with a recent diag- participated in discussions with peers. Mothers explained nosis. However, several experienced difficulties finding peer this as being partly caused by many fathers having difficul- support networks at the time of the diagnosis and suggested ties sharing their feelings and because of gender-related the potential role of health professionals as mediators for norms in society. According to the mothers, a separate closed establishing peer contacts. By means of word of mouth or Facebook group was set up specifically for fathers, and they through personal invitations, mothers sooner or later found speculated that it was possible that fathers would be more online and face-to-face peer networks. The networks active when mothers could not read their messages. extended over large geographical distances and some respon- Respondents also discussed that mothers typically take a dents had traveled long distances to meet peers face-to-face. larger responsibility investigating things related to their situ- On the contrary, some respondents mentioned that peer net- ation, and further, that many mothers perhaps experience a works arranged too frequent face-to-face gatherings and that greater need to express their emotions than fathers do. some of these activities were not suited for children with dis- It has been up for discussion in the group [that members should] abilities. Over time, the emotional bond with some peers feel free to add their partners or men or whatever, so that they grew stronger and evolved into close friendships with peers are also included. And then it’s often—or not often, but it who knew their background and whom they could turn to happens—that someone says “yes, but he thinks it is a bit when feeling an urgent need for support. According to the difficult to talk in such large groups,” or that many [fathers] mothers, the need for peer support varied over time, being read but maybe they don’t write. . . . There’s also a subgroup [for high at certain instances, such as when the child was young fathers] . . . I do not really know how big it is, but I know that it or in connection with a surgery. has been mentioned on many occasions and I’ve got the feeling that many fathers have turned to it. (Mother 4, 33 years old) It’s nice to have someone who you know has followed your journey, so that you don’t always need to establish new contacts with parents when [staying at the hospital], when the situation Communicating Emotional Support With feels the most difficult. . . . Mainly, there are three other parents that I have a really strong relationship with. (Mother 4, 33 years Peers Who Understand the Unique Challenges old) Presented to Mothers The second category heading concerns the unique reciprocal Mothers described that they used the various peer support communication of emotional support between peers. One of channels for different purposes. Communication in smaller the main reasons for wanting to communicate with peers was and closed online groups was dedicated for peer support con- to gain insights on how life is for other mothers in similar cerning intimate topics, whereas larger groups mainly served situations. Through peer interactions, mothers learned about the purpose of keeping updated on information. In the closed important aspects of parenthood and could communicate groups, where they had established a mutual trust with other with persons whom they felt were able to understand their members, respondents felt secure enough to write freely and situation. In their messages, mothers could tell peers about unconstrained. In other larger groups, with varied members, their own experiences and coping strategies, which provided respondents felt more restricted in their communication. In emotional relief and a sense of comfort. Interacting with comparison with the closed Facebook groups, the purpose of peers resulted in feeling less alone, feeling hope, and an the national association and its associated local groups was increased feeling of togetherness. Communicating with peers not seen as a channel for direct communication, but rather, as felt easier than talking with others, as there was less need to a means to improve the care and well-being of families and explain basic details. Talking with peers who understand to facilitate peer contacts. daily life challenges also contributed to feeling acknowl- edged and less alienated. [The national association and the closed peer support groups] have completely different basic purposes. The [local association] was created for, among other things, spreading information Even if you do not always write or even if you are not always about these activities and there is nothing written at all on an active [in the peer support groups], you know that there are individual level, I would say. Such as “now I have this problem people there who actually understand. I think we always need to 146 Journal of Family Nursing 28(2) have a little of that when you end up in a situation, because people who may not be immersed in the world [we as parents] when you meet people and they say “ I understand” you almost live in. (Mother 4, 33 years old) get a little angry because they really don’t understand! But [in the peer support groups], you know that the people who are there understand, and just knowing that has been very, very nice. Exchanging Valuable Information Derived From (Mother 4, 33 years old) Personal Experiences That Is Otherwise Difficult to Find Much of the activities in the peer networks revolved around exchanging emotional support. Mothers described The third category heading concerns the exchange of infor- the online community as having an open atmosphere where mation between peers. By sharing their collective knowledge they could vent their emotional distress in a safe setting. and communicating advice grounded in their own experi- They highly appreciated having an arena where they could ences, mothers could help lessen the impact of stressful chal- write about their thoughts and feelings when being in a par- lenges presented to peers. From the perspectives of the ticularly emotionally challenging situation. When writing mothers, parents of children with congenital heart disease messages, mothers were presented with an opportunity to become lay experts regarding the daily challenges in their process their thoughts and emotions. Related to this, mothers lives. Having collected valuable experiences over the course described that a potential downside of interacting with peers of several years, mothers could inform and guide one another was that it could bring up difficult emotions and memories. over the course of parenthood. According to the mothers, This happened when reading messages from parents of chil- parents with recent diagnoses sincerely appreciate hearing dren with very poor prognoses and from expectant parents and reading honest and uncensored depictions from more deliberating over whether or not to continue the pregnancy. experienced peers. Nevertheless, the resounding description was that reading Last week, someone wrote and was completely shocked. She had and writing messages from peers mainly involved positive been to an ultrasound and had heard the word “wheezing” and effects on their psychological well-being. she heard the word “ASD” [Atrial septal defect] and then she kind of closed down. . . . I wrote that there are many different We [in the peer support groups] write things like “now I feel so heart defects and what your daughter has is one of the most sad” and “now this has happened” or “now I’ve received this common defects and that means this and that, the whistling letter” and “now my child will soon have surgery,” or whatever sound is that faint sound that we talk about . . . she thanked me it may be, or someone who writes “now my child passed away for the explanation because it was what she needed. (Mother 3, and now there is nothing left.” And then, there are many who 50 years old) write back having been in the same situation. Who may have something to refer to and can write a few lines that “I recognize Respondents described that the anxiety experienced myself in that” and “thinking of you” or just “giving you a hug” or posting a heart or just something that shows that you kind of among many parents with a recent diagnosis was decreased understand what it’s all about. (Mother 9, 39 years old) when peers provide them with information and examples derived from their own lives. By communicating about their Being a member of a closed Facebook group involved a experiences, peers helped one another prepare for particularly feeling of being able to freely write about their emotions and difficult challenges, such as their child’s future surgeries. This thoughts without constraints or fear of judgment. Mothers included practical information that could be difficult to find described feeling that they could be honest when interacting on their own, such as when to take parental leave and how to with peers and vent their feelings in an allowing arena. find social benefits available for parents of ill children. Other Overall, the tone in the closed groups was regarded as non- practical aspects involved school-related topics and how to judgmental and respectful toward all types of feelings and care for a child with a percutaneous endoscopic gastrostomy. views, even those that may be regarded as particularly diffi- cult or taboo. The fact that the groups were inaccessible for You can give concrete examples of things like don’t use up the parental leave without checking if you can get temporary health professionals made respondents feel comfortable to parental benefits, all these practical things, especially because write more openly about their feelings and experiences. we experienced a lack of such information. It took a very long time before we got to know everything, from temporary parental Being a closed group for us who are parents, it creates benefits to care allowance to about schools and preschools and opportunities for a very open climate so that everything can be what you can demand, what you can do yourself . . . [In the sort of ventilated, being open about how you think and feel. Also, support groups], there are many types of practical advice or since the group is closed, no one else [who is not a member] can where you can turn to get answers to certain questions, and so see what is written and said among us when checking their feed. on. (Mother 4, 33 years old) I think that is a big advantage, because you don’t always feel on top and sometimes you just want to vent about what feels A significant purpose of exchanging information was dis- difficult, and here [in the closed peer support group] you can do that without exposing yourself to too many questions from cussing psychosocial aspects related to having a child with a Carlsson and Mattsson 147 congenital heart defect, including their own emotional rely on for emotional support. Communicating with peers responses as mothers as well as their relationship with the involves the reciprocal exchange of unique emotional sup- child. Experienced mothers mentioned that they had suffi- port between mothers who understand one another. It also cient knowledge about the medical aspects related to the involves the exchange of information derived from the col- heart defect, and instead communicate with peers to gain lective knowledge and experience of many parents, and thus, information about other aspects of the complex situation of is difficult to find without the help of peers. being a parent of a child with multiple diagnoses, such as We explored experiences in a population that has only neuropsychiatric diagnoses. been scarcely researched in prior studies. From a wider per- spective, peer support involves many potential psychological For me, [other aspects than my child’s heart defect] have been benefits that could help improve the psychological well- more interesting, in that he then also has neuropsychiatric being among parents of children with chronic diseases and difficulties which is what we struggle with as a family right now, disabilities (Niela-Vilén et al., 2014; Shilling et al., 2013). much more than his heart defect. We have kind of landed in the The results of our study echo these prior research findings. heart defect and we know how to deal with it and what has Research indicates that peer counseling programs have the become difficult today is this neuropsychiatric problem . . . The potential to alleviate mental health illnesses and can result in neuropsychiatric part is much bigger for us right now and that’s greater access to psychological support among populations the type of groups we value most right now. (Mother 7, 45 years underserved by traditional psychotherapy (Bernecker et al., old) 2020). According to other studies, subgroups of parents of children with severe and rare illnesses report an unmet need The mothers regarded the main purpose of peer communi- of psychosocial support (Kukkola et al., 2017; Pelentsov et cation as gaining insights into the lives of peers and not as a al., 2016). Indeed, mothers interviewed in this study source of medical information. Nevertheless, peers occasion- described difficulties finding peer support networks and ally helped one another by explaining medical diagnoses, desired help establishing peer contacts following the diagno- treatment, terms, and other medical facts in a way that felt sis. Nurses have an important role in this regard, as potential comprehensible. Mothers mentioned that they appreciated coordinators in family-centered care (Forbes, 2014) who the possibility to write a medical question in the closed acknowledge the positive effects of peer support and who Facebook group and quickly receive a response from a peer. facilitate contact between parents faced with a recent diagno- This was seen as a way to lessen the burden on health care sis and peer organizations (Bruce & Sundin, 2018). Taken services, as it led to feeling less urgency to contact profes- together, the findings call attention to the importance of clin- sionals when needing an answer to a minor question. Another ical routines based on collaboration between health profes- aspect brought up was the possibility to complement medical sionals and peer networks. In clinical settings, nurses should information from health professionals with the information explore the need for peer support among parents, and when from peers, which was particularly appreciated when they they articulate an interest, be ready to facilitate contact with had experienced the information provided by professionals peer networks. as insufficient or confusing. Previous research has shown that parents of children with congenital heart defects experience a need for additional We experienced the regular medical doctor as very competent, information that supplements the information provided by but he did not always give enough information to the extent we needed, a bit sparse so to say. . . . Often, you want information professionals. These parents are often presented with unique about the small things. Of course, you also want information challenges related to the child’s health, and search for practi- about surgeries and other procedures and examinations and cal information as a means to deal with their activities in things like that. But between parents, there’s much you recognize daily life (Bellander & Nikolaidou, 2017). According to and you can relate to each other in a different way. . . . I don’t another qualitative study, parents who have received a prena- want to burden the health care services with everything and tal diagnosis of congenital heart defect in the expected child have to ask about the smallest things, if it’s not of a deadly cope with their situation by gathering information (Bratt et concern. It’s great to have another [peer] to discuss with and al., 2015). In our study, respondents described similar behav- gain some additional information. (Mother 5, 37 years old) iors as they exchanged practical information concerning a wide range of practical and emotional issues with peers, Discussion which they highly valued. Moreover, the information In this exploratory study, mothers of children with congenital received from peers was considered difficult to find on their heart defects were interviewed about their experiences of own, illustrating the unique and impactful potential of peer peer support. The findings illustrate that mothers establish support within this population. Through the reciprocal various channels used for peer support and navigate between exchange of information, online communities involve the channels depending on what type of information or support process of collective sense-making, in which peers construct they need. Through the channels, they find mothers who they meaning by learning from one another (Nakikj, 2019). Our develop strong friendships with and who they turn to and findings illustrate a need for experimental studies 148 Journal of Family Nursing 28(2) investigating the informational benefits of peer support for diagnosis, need more information about peer support net- parents of children with congenital heart defects. Before and works and want health professionals to initiate contact with after the birth of their child, some parents have a need to hear peers. Nurses and other health professionals need to care- stories told by other parents with similar experiences. Nurses fully evaluate a mother’s need for peer support. Taken can ask parents about this and help them gain a deeper under- together, this study illustrates the potential impact and rele- standing and familiarity by relating to others. For example, vance of peer support interventions in pediatric cardiology nurses could collect anonymous depictions shared by their care. Our findings imply that nurses should develop, evalu- previous patients, which may be shared with parents in need ate, and implement peer support interventions for these par- of psychological support. The psychosocial effects of such ents, and that researchers need to systematically assess its interventions should be investigated in future studies. potential impact on psychosocial well-being in experimental There are methodological limitations that need to be con- studies. The findings illustrate the strengths of psychosocial sidered when interpreting the findings of this study. This was peer support on a personal level for parents in need of psy- an exploratory study interviewing 10 mothers, recruited chosocial support. Furthermore, this study highlights the through convenience sampling. The mothers had experi- clinical relevance in establishing reliable collaboration and ences of different modalities of peer support and represented liaisons between health care services and peer support a range of ages. However, the sample was not varied regard- networks. ing educational level and gender. All respondents were moth- ers with higher education and more research exploring Declaration of Conflicting Interests experiences among other subgroups is needed. The mothers The author(s) declared no potential conflicts of interest with were recruited by means of convenience sampling, implying respect to the research, authorship, and/or publication of this that more research is needed that utilizes other recruitment article. methods. While the chosen recruitment method resulted in all respondents having experience of peer support, we Funding acknowledge that the findings do not illustrate experiences The author(s) disclosed receipt of the following financial support among mothers with negative or stressful experiences of peer for the research, authorship, and/or publication of this article: This support. On the contrary, this study provides novel in-depth study was supported by the Swedish foundation for families of chil- findings about a population underserved in research investi- dren diagnosed with congenital heart defects (Hjärtebarnsfonden). gating experiences of peer support. Moreover, the respon- The funders had no role in the study design, in the collection, analy- sis and interpretation of data, the writing of articles, or the decision dents were interviewed via telephone, which involves the to submit for publication. potential to increase anonymity and promote respondents to feel more comfortable during the interview (Opdenakker, ORCID iD 2006). However, telephone interviews lack the possibility of engaging in and observing nonverbal communication Tommy Carlsson https://orcid.org/0000-0003-4141-8692 (Sturges & Hanrahan, 2004). While we acknowledge that face-to-face or video interviews could have resulted in more References detailed data, our general understanding is that the mothers Bellander, T., & Nikolaidou, Z. (2017). Building health knowledge appreciated the practicality of being interviewed via tele- online: Parents’ online information searching on congenital phone and we believe that it did not involve any significant heart defects. 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Global birth prevalence of congenital heart defects 1970-2017: Updated systematic review and meta- Tommy Carlsson, CCRN, RM, PhD, is an associate professor in analysis of 260 studies. International Journal of Epidemiology, caring sciences at the Department of Health Sciences, the Swedish 48(2), 455–463. https://doi.org/10.1093/ije/dyz009 Red Cross University College, Sweden, and affiliated as a researcher Lytzen, R., Vejlstrup, N., Bjerre, J., Bjørn Petersen, O., Leenskjold, at the research group Healthcare Sciences and eHealth, the S., Keith Dodd, J., Stener Jørgensen, F., & Søndergaard, L. Department of Women’s and Children’s Health, Uppsala University, (2019). The accuracy of prenatal diagnosis of major con- Sweden. His research is focused on nursing, midwifery, psychosocial genital heart disease is increasing. Journal of Obstetrics and support, and health-related information. Recent publications include: Gynaecology, 40(3), 308–315. https://doi.org/10.1080/014436 “Quality of Web-Based Information at the Beginning of a Global 15.2019.1621814 Pandemic: A Cross-Sectional Infodemiology Study Investigating Malterud, K. (2012). Systematic text condensation: A strategy for Preventive Measures and Self Care Methods of the Coronavirus qualitative analysis. Scandinavian Journal of Public Health, Disease 2019” in BMC Public Health (2021, with J. Stern & S. 40(8), 795–805. https://doi.org/10.1177/1403494812465030 Georgsson), “Waterbirth in Low-Risk Pregnancy: An Exploration of Miranović, V. (2016). The incidence of congenital heart defects in Women’s Experiences” in Journal of Advanced Nursing (2020, with the world regarding the severity of the defect. Military Medical H. Ulfsdottir), and “Psychological Distress in Parents of Children and Pharmaceutical Journal of Serbia, 73(2), 159–164. https:// Treated for Cancer: An Explorative Study” in PLoS One (2019, with doi.org/10.2298/vsp140917033m L. Kukkola, L. Ljungman, E. Hovén, & L. von Essen). 150 Journal of Family Nursing 28(2) Elisabet Mattsson, RNM, PhD, is a professor in caring sciences at Homelessness and Their Perspectives of Health care Services: A the Department of Health Care Sciences, Ersta Sköndal Bräcke Qualitative Study” in International Journal of Nursing Studies University College, Stockholm, Sweden, and affiliated as a (2021, with Å. Kneck, M. Salzmann-Erikson, & A. Klarare), researcher at Health care Sciences and eHealth, the Department of “Translation, Cross-Cultural Adaptation, and Psychometric Women’s and Children’s Health, Uppsala University, Sweden. She Analysis of the Attitudes Towards Homelessness Inventory for Use is the principal investigator (PI) of a research program aiming to in Sweden” in Worldviews on Evidence-Based Nursing (2021, A. promote inclusion health among women in homelessness, by devel- Klarare, A. Wikman, M. Söderlund, J. McGreevy, & A. Rosenblad), oping and implementing interventions to address health inequities, and “Homeless Persons’ Experiences of Health- and Social Care: A in co-production with women having experiences of homelessness. Systematic Integrative Review” in Health and Social Care in the Recent publications include: ““Stripped of Dignity”–Women in Community (2020, with P. Omerov, Å. G. Craftman, & A. Klarare). http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Family Nursing SAGE

Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden

Journal of Family Nursing , Volume 28 (2): 9 – May 1, 2022

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© The Author(s) 2022
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1074-8407
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1552-549X
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10.1177/10748407211067788
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Abstract

The aim of this study was to describe experiences of peer support among mothers of children with congenital heart defects. Ten mothers were interviewed through a semi-structured approach and interviews were analyzed with systematic text condensation. The respondents established various channels used for peer support and navigated between the channels depending on what type of information or support they needed. Through the channels, they found peers they developed strong friendships with and who they relied on for emotional support. Communicating with peers involved the reciprocal exchange of unique emotional support between peers who understand each other as well as the exchange of information derived from their collective knowledge, and thus, difficult to find without the help of peers. The findings illustrate the potential strengths of establishing reliable collaboration and liaisons between clinical units and peer support networks. Keywords family caregivers, family/participant group, qualitative, research methodology/design, congenital heart defects, parents, peer support, social support Congenital heart defects include a wide range of structural One way to receive social support is from a person with birth defects involving the heart and the neighboring blood experience of a similar situation, often referred to as peer vessels, with a significant variability in medical severity and support. A defining feature of peer support is that lived expe- prognosis. The incidence of severe congenital heart defects rience is utilized when providing emotional support (Watson, requiring expert medical treatment is between 0.4 and 2.3 per 2019). Indeed, empirical research reports that parents of chil- 1,000 live births (Miranović, 2016), and is increasing glob- dren with congenital heart defects articulate a need for peer ally (Liu et al., 2019), illustrating the importance of prenatal support (Bruce et al., 2014), and parents of children with and postnatal screening routines (Ewer, 2014; Lytzen et al., birth defects often establish distance-spanning or face-to- 2019). When a diagnosis is established, parents are faced face networks to communicate with peers (Hall et al., 2015). with an unfamiliar and frightening situation resulting in con- Limited research suggests that peer support between parents siderable psychological distress, trauma reactions, and of children with congenital heart defects has the potential to impaired quality of life (Bratt et al., 2019; Franich-Ray et al., result in emotional validation, reassurance, problem-solving, 2013; Sood et al., 2018). Following the diagnosis, parents are and increased preparedness for future situations (Gramszlo confronted with a complex situation where their own inter- et al., 2020). ests and social activities are downgraded in favor of structur- While several networks for peer support exist for parents ing the daily life around their child (Bruce et al., 2014). Some of children with congenital heart defects, few studies have studies suggest that social support decreases the impact a congenital heart defect may have on the psychosocial situa- The Department of Women’s and Children’s Health, Uppsala University, tion for families and can be a predictor of psychological cop- Uppsala, Sweden ing among parents of children with congenital heart defects The Swedish Red Cross University College, Huddinge, Sweden (Wei et al., 2015). Thus, social support may predict psycho- 3 Ersta Sköndal Bräcke University College, Stockholm, Sweden logical health among parents and is an important factor to Corresponding Author: consider in pediatric cardiac care. However, the same review Tommy Carlsson, Department of Women’s and Children’s Health, concludes a need for more qualitative research that explores Uppsala University, Akademiska sjukhuset, Uppsala 75185, Sweden. the experiences and care needs of these parents. Email: tommy.carlsson@kbh.uu.se Carlsson and Mattsson 143 explored the psychosocial effects that these parents experi- Table 1. Sample Characteristics (n = 10 Respondents). ence when communicating with peers. In general, peer sup- Characteristic n port between parents has the potential to offer informational and emotional affirmations that can supplement other types Age of respondents (years) of professional support (Niela-Vilén et al., 2014). More spe- 30–39 5 cifically, peer support among parents of children with dis- 40–49 3 abilities can result in shared social identities, mutual 50–59 2 exchanges of information, personal growth, and reciprocal Age of child (years) benefits related to communicating support to others (Shilling ≤3 3 4–12 5 et al., 2013). However, evidence is limited regarding peer 13–18 1 support for parents of children with congenital heart defects >18 1 and more empirical research is needed to draw conclusions Educational level about this population. Taken together, information on par- High school 2 ents’ perceptions of social support during their child’s dis- College or university 8 ease trajectory could broaden our understanding of how to Time of diagnosis improve pediatric cardiac care. The understanding of par- Prenatal 2 ents’ experiences and needs is imperative for health care pro- Postnatal 8 viders to be able to formulate and implement appropriate interventions (Wei et al., 2015). Sample Aim The respondents were recruited by means of convenience The aim of this study was to describe experiences of peer sampling via ads published in two closed Facebook groups support among mothers of children with congenital heart for parents of children with congenital heart defects (approx- defects. imately 900 and 100 members, respectively) and in a news- letter from the national association Hjärtebarnsfonden. One mother of a child with a congenital heart defect, who was Method identified from the clinical network of one of the authors, Study Design facilitated access to these closed peer support groups. This parent was a member of both Facebook groups and posted This was a qualitative and exploratory study utilizing an messages in each group containing invitations to participate inductive approach. Swedish mothers of children with con- in the study. Administrators in the national association genital heart defects were interviewed about their experi- aided in providing information in newsletters. Initially, ences of participating in peer support activities, focusing on respondents participated in an online survey exploring experienced benefits and psychosocial consequences related experiences of peer support through written open-ended to receiving as well as providing the support. questions, the results of which are reported elsewhere (n = 61 participants in the initial survey; Carlsson et al., 2020). After having submitted their responses in the survey, Setting respondents were asked whether they were interested in participating in this interview study. Eleven mothers and This study was conducted in Sweden, where children with none of the fathers participating in the survey expressed an congenital heart defects are provided care at state-run hos- interest in participating in a follow-up interview. Inclusion pitals, primarily via pediatric cardiology units. In addition criteria were that the respondents needed to be a parent of a to medical care, families are offered psychosocial support living child with a congenital heart defect and that they provided by nurses, social workers/counselors, and psy- needed to have experience of participating in either online/ chologists. One national association devoted to children distance-spanning or face-to-face peer support activities. with congenital heart defects and their family members is When contacted, one mother did not respond to phone calls located in Sweden and offers emotional and economic sup- or emails. Thus, 10 mothers constitute the final sample in port to its members (Swedish: Hjärtebarnsfonden). The this study. organization arranges regional as well as national peer The age of the respondents ranged from 30 to 51 years, support activities, including camps where families can with a median age of 40 years. One had two children, whereas meet peers with similar experiences and circumstances. In the remaining mothers had one child diagnosed with con- addition to these activities, parents may also decide to par- genital heart defects. All children (n = 11) had undergone ticipate in online communities, mainly accessed and man- cardiac surgery. Nine had experience of peer communication aged on the social networking platform Facebook. 144 Journal of Family Nursing 28(2) Table 2. Semi-Structured Interview Guide. Main questions Subquestions What is your experience of being part of How did you experience the contact with the association? the patient association after your child What has the contact with the association meant for you during the pregnancy and after had been diagnosed with a congenital your child was born? heart defect? What has the contact with the association meant for your family? What is your experience of getting in In what ways have you had contact with and received support from other parents? touch with other parents who have What has it meant to you to have contact with other parents of children with congenital experience of having a child with a heart defects? congenital heart defect? How have you experienced the support that the parents have given you during the pregnancy and after the birth of your child? When was the support especially valuable? Can you please give some examples of positive experiences related to the support? Can you please give some examples of negative experiences related to the support? What experiences do you have of being What has it meant for you to provide the support? the one who provides support to In the future, would you like to provide support to other parents who have recently parents who find out that their child learned that their child has a congenital heart defect? has a congenital heart defect? via the internet, eight had experience of peer support via the identified, portraying the general impression of the experi- national association, seven had experience of face-to-face ences described by the respondents. The following steps peer interactions, and three had participated in peer support involved identification of meaning units, which were sorted via telephone. Table 1 presents sample characteristics. into code groups and subgroups illustrating decontextual- ized collections of units sharing a similar content. The code groups and subgroups were inspired by the preliminary Data Collection themes. Condensations were then constructed, defined as The interviews were conducted via telephone and with the artificial quotations written in first-person format and based aid of a semi-structured interview guide (Table 2). The last on the identified code groups. The analyst then rewrote the author, who is a professor, a pediatric nurse, and a midwife condensations as reconceptualized descriptions illustrating with previous experience of performing research inter- a cross-case synthetization written in third-person format, views, conducted the interviews. At the start of each inter- and formulated category headings of each code group, por- view, informed consent was confirmed verbally. The traying the most significant findings within each of the code respondents were encouraged to elucidate their responses groups. In total, three category headings were identified and follow-up questions were used to promote rich descrip- during this stage. tions. All interviews were audio recorded and transcribed The first author performed the analysis, a male specialist verbatim in Swedish. Collectively, the transcribed inter- nurse, registered midwife, and researcher with previous views resulted in 117 pages (1.5 line spacing and 12 font experience of conducting qualitative analysis including sys- size, Times New Roman) including a total of 50,437 words. tematic text condensation. The organization of meaning The mean interview length was 39 min (median: 36; range: units, code groups, and subgroups was managed with Nvivo 17–68). for Mac. No automation tools or functions were used in the analysis. Analysis Ethical Considerations The interviews were analyzed with systematic text conden- sation, an exploratory qualitative method for thematic cross- Respondents provided informed consent to participate after case analysis. Systematic text condensation is a qualitative receiving written and oral information about the study. All descriptive approach, focusing on what the respondents are participants had the option to decline participation at any describing rather than interpreting underlying meanings given time without the need for explanation. Only research- (Malterud, 2012). The analysis involves steps used to iden- ers actively involved in the study had access to the raw data. tify and group significant findings in an iterative process. The study received ethical approval by The Regional Ethical Initially, all transcripts were read in a successive manner, Review Board in Uppsala, Sweden (Approval Number: keeping an open mind while reading. After this initial 2016/366). No monetary or other incentives for participation perusal of the transcripts, preliminary themes (n = 7) were were provided. Carlsson and Mattsson 145 with my dear child, can you help me” or “give me tips and Findings advice” or things like that. Nothing of that nature, but rather Establishing and Navigating Through Peer [the local association] only really acts as an advertisement setting for information about activities and the work of the Communication by Participating in Channels association. (Mother 7, 45 years old) Serving Different Purposes The first category heading concerns the methods that the Several respondents described an absence of fathers in mothers utilized to establish and navigate peer support chan- online communities. Fathers were indeed members in the nels. Overall, peer support was regarded as very important groups and read messages posted by others, but infrequently for the mothers, especially among those with a recent diag- participated in discussions with peers. Mothers explained nosis. However, several experienced difficulties finding peer this as being partly caused by many fathers having difficul- support networks at the time of the diagnosis and suggested ties sharing their feelings and because of gender-related the potential role of health professionals as mediators for norms in society. According to the mothers, a separate closed establishing peer contacts. By means of word of mouth or Facebook group was set up specifically for fathers, and they through personal invitations, mothers sooner or later found speculated that it was possible that fathers would be more online and face-to-face peer networks. The networks active when mothers could not read their messages. extended over large geographical distances and some respon- Respondents also discussed that mothers typically take a dents had traveled long distances to meet peers face-to-face. larger responsibility investigating things related to their situ- On the contrary, some respondents mentioned that peer net- ation, and further, that many mothers perhaps experience a works arranged too frequent face-to-face gatherings and that greater need to express their emotions than fathers do. some of these activities were not suited for children with dis- It has been up for discussion in the group [that members should] abilities. Over time, the emotional bond with some peers feel free to add their partners or men or whatever, so that they grew stronger and evolved into close friendships with peers are also included. And then it’s often—or not often, but it who knew their background and whom they could turn to happens—that someone says “yes, but he thinks it is a bit when feeling an urgent need for support. According to the difficult to talk in such large groups,” or that many [fathers] mothers, the need for peer support varied over time, being read but maybe they don’t write. . . . There’s also a subgroup [for high at certain instances, such as when the child was young fathers] . . . I do not really know how big it is, but I know that it or in connection with a surgery. has been mentioned on many occasions and I’ve got the feeling that many fathers have turned to it. (Mother 4, 33 years old) It’s nice to have someone who you know has followed your journey, so that you don’t always need to establish new contacts with parents when [staying at the hospital], when the situation Communicating Emotional Support With feels the most difficult. . . . Mainly, there are three other parents that I have a really strong relationship with. (Mother 4, 33 years Peers Who Understand the Unique Challenges old) Presented to Mothers The second category heading concerns the unique reciprocal Mothers described that they used the various peer support communication of emotional support between peers. One of channels for different purposes. Communication in smaller the main reasons for wanting to communicate with peers was and closed online groups was dedicated for peer support con- to gain insights on how life is for other mothers in similar cerning intimate topics, whereas larger groups mainly served situations. Through peer interactions, mothers learned about the purpose of keeping updated on information. In the closed important aspects of parenthood and could communicate groups, where they had established a mutual trust with other with persons whom they felt were able to understand their members, respondents felt secure enough to write freely and situation. In their messages, mothers could tell peers about unconstrained. In other larger groups, with varied members, their own experiences and coping strategies, which provided respondents felt more restricted in their communication. In emotional relief and a sense of comfort. Interacting with comparison with the closed Facebook groups, the purpose of peers resulted in feeling less alone, feeling hope, and an the national association and its associated local groups was increased feeling of togetherness. Communicating with peers not seen as a channel for direct communication, but rather, as felt easier than talking with others, as there was less need to a means to improve the care and well-being of families and explain basic details. Talking with peers who understand to facilitate peer contacts. daily life challenges also contributed to feeling acknowl- edged and less alienated. [The national association and the closed peer support groups] have completely different basic purposes. The [local association] was created for, among other things, spreading information Even if you do not always write or even if you are not always about these activities and there is nothing written at all on an active [in the peer support groups], you know that there are individual level, I would say. Such as “now I have this problem people there who actually understand. I think we always need to 146 Journal of Family Nursing 28(2) have a little of that when you end up in a situation, because people who may not be immersed in the world [we as parents] when you meet people and they say “ I understand” you almost live in. (Mother 4, 33 years old) get a little angry because they really don’t understand! But [in the peer support groups], you know that the people who are there understand, and just knowing that has been very, very nice. Exchanging Valuable Information Derived From (Mother 4, 33 years old) Personal Experiences That Is Otherwise Difficult to Find Much of the activities in the peer networks revolved around exchanging emotional support. Mothers described The third category heading concerns the exchange of infor- the online community as having an open atmosphere where mation between peers. By sharing their collective knowledge they could vent their emotional distress in a safe setting. and communicating advice grounded in their own experi- They highly appreciated having an arena where they could ences, mothers could help lessen the impact of stressful chal- write about their thoughts and feelings when being in a par- lenges presented to peers. From the perspectives of the ticularly emotionally challenging situation. When writing mothers, parents of children with congenital heart disease messages, mothers were presented with an opportunity to become lay experts regarding the daily challenges in their process their thoughts and emotions. Related to this, mothers lives. Having collected valuable experiences over the course described that a potential downside of interacting with peers of several years, mothers could inform and guide one another was that it could bring up difficult emotions and memories. over the course of parenthood. According to the mothers, This happened when reading messages from parents of chil- parents with recent diagnoses sincerely appreciate hearing dren with very poor prognoses and from expectant parents and reading honest and uncensored depictions from more deliberating over whether or not to continue the pregnancy. experienced peers. Nevertheless, the resounding description was that reading Last week, someone wrote and was completely shocked. She had and writing messages from peers mainly involved positive been to an ultrasound and had heard the word “wheezing” and effects on their psychological well-being. she heard the word “ASD” [Atrial septal defect] and then she kind of closed down. . . . I wrote that there are many different We [in the peer support groups] write things like “now I feel so heart defects and what your daughter has is one of the most sad” and “now this has happened” or “now I’ve received this common defects and that means this and that, the whistling letter” and “now my child will soon have surgery,” or whatever sound is that faint sound that we talk about . . . she thanked me it may be, or someone who writes “now my child passed away for the explanation because it was what she needed. (Mother 3, and now there is nothing left.” And then, there are many who 50 years old) write back having been in the same situation. Who may have something to refer to and can write a few lines that “I recognize Respondents described that the anxiety experienced myself in that” and “thinking of you” or just “giving you a hug” or posting a heart or just something that shows that you kind of among many parents with a recent diagnosis was decreased understand what it’s all about. (Mother 9, 39 years old) when peers provide them with information and examples derived from their own lives. By communicating about their Being a member of a closed Facebook group involved a experiences, peers helped one another prepare for particularly feeling of being able to freely write about their emotions and difficult challenges, such as their child’s future surgeries. This thoughts without constraints or fear of judgment. Mothers included practical information that could be difficult to find described feeling that they could be honest when interacting on their own, such as when to take parental leave and how to with peers and vent their feelings in an allowing arena. find social benefits available for parents of ill children. Other Overall, the tone in the closed groups was regarded as non- practical aspects involved school-related topics and how to judgmental and respectful toward all types of feelings and care for a child with a percutaneous endoscopic gastrostomy. views, even those that may be regarded as particularly diffi- cult or taboo. The fact that the groups were inaccessible for You can give concrete examples of things like don’t use up the parental leave without checking if you can get temporary health professionals made respondents feel comfortable to parental benefits, all these practical things, especially because write more openly about their feelings and experiences. we experienced a lack of such information. It took a very long time before we got to know everything, from temporary parental Being a closed group for us who are parents, it creates benefits to care allowance to about schools and preschools and opportunities for a very open climate so that everything can be what you can demand, what you can do yourself . . . [In the sort of ventilated, being open about how you think and feel. Also, support groups], there are many types of practical advice or since the group is closed, no one else [who is not a member] can where you can turn to get answers to certain questions, and so see what is written and said among us when checking their feed. on. (Mother 4, 33 years old) I think that is a big advantage, because you don’t always feel on top and sometimes you just want to vent about what feels A significant purpose of exchanging information was dis- difficult, and here [in the closed peer support group] you can do that without exposing yourself to too many questions from cussing psychosocial aspects related to having a child with a Carlsson and Mattsson 147 congenital heart defect, including their own emotional rely on for emotional support. Communicating with peers responses as mothers as well as their relationship with the involves the reciprocal exchange of unique emotional sup- child. Experienced mothers mentioned that they had suffi- port between mothers who understand one another. It also cient knowledge about the medical aspects related to the involves the exchange of information derived from the col- heart defect, and instead communicate with peers to gain lective knowledge and experience of many parents, and thus, information about other aspects of the complex situation of is difficult to find without the help of peers. being a parent of a child with multiple diagnoses, such as We explored experiences in a population that has only neuropsychiatric diagnoses. been scarcely researched in prior studies. From a wider per- spective, peer support involves many potential psychological For me, [other aspects than my child’s heart defect] have been benefits that could help improve the psychological well- more interesting, in that he then also has neuropsychiatric being among parents of children with chronic diseases and difficulties which is what we struggle with as a family right now, disabilities (Niela-Vilén et al., 2014; Shilling et al., 2013). much more than his heart defect. We have kind of landed in the The results of our study echo these prior research findings. heart defect and we know how to deal with it and what has Research indicates that peer counseling programs have the become difficult today is this neuropsychiatric problem . . . The potential to alleviate mental health illnesses and can result in neuropsychiatric part is much bigger for us right now and that’s greater access to psychological support among populations the type of groups we value most right now. (Mother 7, 45 years underserved by traditional psychotherapy (Bernecker et al., old) 2020). According to other studies, subgroups of parents of children with severe and rare illnesses report an unmet need The mothers regarded the main purpose of peer communi- of psychosocial support (Kukkola et al., 2017; Pelentsov et cation as gaining insights into the lives of peers and not as a al., 2016). Indeed, mothers interviewed in this study source of medical information. Nevertheless, peers occasion- described difficulties finding peer support networks and ally helped one another by explaining medical diagnoses, desired help establishing peer contacts following the diagno- treatment, terms, and other medical facts in a way that felt sis. Nurses have an important role in this regard, as potential comprehensible. Mothers mentioned that they appreciated coordinators in family-centered care (Forbes, 2014) who the possibility to write a medical question in the closed acknowledge the positive effects of peer support and who Facebook group and quickly receive a response from a peer. facilitate contact between parents faced with a recent diagno- This was seen as a way to lessen the burden on health care sis and peer organizations (Bruce & Sundin, 2018). Taken services, as it led to feeling less urgency to contact profes- together, the findings call attention to the importance of clin- sionals when needing an answer to a minor question. Another ical routines based on collaboration between health profes- aspect brought up was the possibility to complement medical sionals and peer networks. In clinical settings, nurses should information from health professionals with the information explore the need for peer support among parents, and when from peers, which was particularly appreciated when they they articulate an interest, be ready to facilitate contact with had experienced the information provided by professionals peer networks. as insufficient or confusing. Previous research has shown that parents of children with congenital heart defects experience a need for additional We experienced the regular medical doctor as very competent, information that supplements the information provided by but he did not always give enough information to the extent we needed, a bit sparse so to say. . . . Often, you want information professionals. These parents are often presented with unique about the small things. Of course, you also want information challenges related to the child’s health, and search for practi- about surgeries and other procedures and examinations and cal information as a means to deal with their activities in things like that. But between parents, there’s much you recognize daily life (Bellander & Nikolaidou, 2017). According to and you can relate to each other in a different way. . . . I don’t another qualitative study, parents who have received a prena- want to burden the health care services with everything and tal diagnosis of congenital heart defect in the expected child have to ask about the smallest things, if it’s not of a deadly cope with their situation by gathering information (Bratt et concern. It’s great to have another [peer] to discuss with and al., 2015). In our study, respondents described similar behav- gain some additional information. (Mother 5, 37 years old) iors as they exchanged practical information concerning a wide range of practical and emotional issues with peers, Discussion which they highly valued. Moreover, the information In this exploratory study, mothers of children with congenital received from peers was considered difficult to find on their heart defects were interviewed about their experiences of own, illustrating the unique and impactful potential of peer peer support. The findings illustrate that mothers establish support within this population. Through the reciprocal various channels used for peer support and navigate between exchange of information, online communities involve the channels depending on what type of information or support process of collective sense-making, in which peers construct they need. Through the channels, they find mothers who they meaning by learning from one another (Nakikj, 2019). Our develop strong friendships with and who they turn to and findings illustrate a need for experimental studies 148 Journal of Family Nursing 28(2) investigating the informational benefits of peer support for diagnosis, need more information about peer support net- parents of children with congenital heart defects. Before and works and want health professionals to initiate contact with after the birth of their child, some parents have a need to hear peers. Nurses and other health professionals need to care- stories told by other parents with similar experiences. Nurses fully evaluate a mother’s need for peer support. Taken can ask parents about this and help them gain a deeper under- together, this study illustrates the potential impact and rele- standing and familiarity by relating to others. For example, vance of peer support interventions in pediatric cardiology nurses could collect anonymous depictions shared by their care. Our findings imply that nurses should develop, evalu- previous patients, which may be shared with parents in need ate, and implement peer support interventions for these par- of psychological support. The psychosocial effects of such ents, and that researchers need to systematically assess its interventions should be investigated in future studies. potential impact on psychosocial well-being in experimental There are methodological limitations that need to be con- studies. The findings illustrate the strengths of psychosocial sidered when interpreting the findings of this study. This was peer support on a personal level for parents in need of psy- an exploratory study interviewing 10 mothers, recruited chosocial support. Furthermore, this study highlights the through convenience sampling. The mothers had experi- clinical relevance in establishing reliable collaboration and ences of different modalities of peer support and represented liaisons between health care services and peer support a range of ages. However, the sample was not varied regard- networks. ing educational level and gender. All respondents were moth- ers with higher education and more research exploring Declaration of Conflicting Interests experiences among other subgroups is needed. The mothers The author(s) declared no potential conflicts of interest with were recruited by means of convenience sampling, implying respect to the research, authorship, and/or publication of this that more research is needed that utilizes other recruitment article. methods. While the chosen recruitment method resulted in all respondents having experience of peer support, we Funding acknowledge that the findings do not illustrate experiences The author(s) disclosed receipt of the following financial support among mothers with negative or stressful experiences of peer for the research, authorship, and/or publication of this article: This support. On the contrary, this study provides novel in-depth study was supported by the Swedish foundation for families of chil- findings about a population underserved in research investi- dren diagnosed with congenital heart defects (Hjärtebarnsfonden). gating experiences of peer support. Moreover, the respon- The funders had no role in the study design, in the collection, analy- sis and interpretation of data, the writing of articles, or the decision dents were interviewed via telephone, which involves the to submit for publication. potential to increase anonymity and promote respondents to feel more comfortable during the interview (Opdenakker, ORCID iD 2006). However, telephone interviews lack the possibility of engaging in and observing nonverbal communication Tommy Carlsson https://orcid.org/0000-0003-4141-8692 (Sturges & Hanrahan, 2004). While we acknowledge that face-to-face or video interviews could have resulted in more References detailed data, our general understanding is that the mothers Bellander, T., & Nikolaidou, Z. (2017). Building health knowledge appreciated the practicality of being interviewed via tele- online: Parents’ online information searching on congenital phone and we believe that it did not involve any significant heart defects. 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Global birth prevalence of congenital heart defects 1970-2017: Updated systematic review and meta- Tommy Carlsson, CCRN, RM, PhD, is an associate professor in analysis of 260 studies. International Journal of Epidemiology, caring sciences at the Department of Health Sciences, the Swedish 48(2), 455–463. https://doi.org/10.1093/ije/dyz009 Red Cross University College, Sweden, and affiliated as a researcher Lytzen, R., Vejlstrup, N., Bjerre, J., Bjørn Petersen, O., Leenskjold, at the research group Healthcare Sciences and eHealth, the S., Keith Dodd, J., Stener Jørgensen, F., & Søndergaard, L. Department of Women’s and Children’s Health, Uppsala University, (2019). The accuracy of prenatal diagnosis of major con- Sweden. His research is focused on nursing, midwifery, psychosocial genital heart disease is increasing. Journal of Obstetrics and support, and health-related information. Recent publications include: Gynaecology, 40(3), 308–315. https://doi.org/10.1080/014436 “Quality of Web-Based Information at the Beginning of a Global 15.2019.1621814 Pandemic: A Cross-Sectional Infodemiology Study Investigating Malterud, K. (2012). Systematic text condensation: A strategy for Preventive Measures and Self Care Methods of the Coronavirus qualitative analysis. Scandinavian Journal of Public Health, Disease 2019” in BMC Public Health (2021, with J. Stern & S. 40(8), 795–805. https://doi.org/10.1177/1403494812465030 Georgsson), “Waterbirth in Low-Risk Pregnancy: An Exploration of Miranović, V. (2016). The incidence of congenital heart defects in Women’s Experiences” in Journal of Advanced Nursing (2020, with the world regarding the severity of the defect. Military Medical H. Ulfsdottir), and “Psychological Distress in Parents of Children and Pharmaceutical Journal of Serbia, 73(2), 159–164. https:// Treated for Cancer: An Explorative Study” in PLoS One (2019, with doi.org/10.2298/vsp140917033m L. Kukkola, L. Ljungman, E. Hovén, & L. von Essen). 150 Journal of Family Nursing 28(2) Elisabet Mattsson, RNM, PhD, is a professor in caring sciences at Homelessness and Their Perspectives of Health care Services: A the Department of Health Care Sciences, Ersta Sköndal Bräcke Qualitative Study” in International Journal of Nursing Studies University College, Stockholm, Sweden, and affiliated as a (2021, with Å. Kneck, M. Salzmann-Erikson, & A. Klarare), researcher at Health care Sciences and eHealth, the Department of “Translation, Cross-Cultural Adaptation, and Psychometric Women’s and Children’s Health, Uppsala University, Sweden. She Analysis of the Attitudes Towards Homelessness Inventory for Use is the principal investigator (PI) of a research program aiming to in Sweden” in Worldviews on Evidence-Based Nursing (2021, A. promote inclusion health among women in homelessness, by devel- Klarare, A. Wikman, M. Söderlund, J. McGreevy, & A. Rosenblad), oping and implementing interventions to address health inequities, and “Homeless Persons’ Experiences of Health- and Social Care: A in co-production with women having experiences of homelessness. Systematic Integrative Review” in Health and Social Care in the Recent publications include: ““Stripped of Dignity”–Women in Community (2020, with P. Omerov, Å. G. Craftman, & A. Klarare).

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Journal of Family NursingSAGE

Published: May 1, 2022

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