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Support, needs and expectations of family caregivers regarding general practitioners – results from an online survey

Support, needs and expectations of family caregivers regarding general practitioners – results... Background: Family caregivers are often the first line of support for people requiring care; although they may personally stand to benefit, these activities substantially increase the risk of physical and emotional stress. General practitioners (GPs) may provide important support and stabilisation, but need to adjust to the needs and expectations of this group in order to do so. The aim of the study was to compare the needs of family caregivers from GPs to the support they actually experience. Additional aims included determining the main factors affecting satisfaction amongst family caregivers with support from GPs. The results were used to develop possible approaches towards optimisation within the purview of general medical practice. Methods: Between January and July 2020, 612 people supporting or caring for a family member responded to an online survey posted in seventeen internet forums focused on family caregivers. In addition to the descriptive analysis, a t-test with independent samples was used to identify significant differences between two groups. We also used binary logistic regression analysis to identify indications of potentially influential factors regarding the experienced support from GPs. Results: Around three out of every four respondents (72%) consulted GPs in care matters. The respondents gave positive responses on their GP’s knowledge of the care situation (71%), approachability in various issues connecting with care and service towards the caregiver (82%). GPs’ efforts in meeting the needs and requirements of the care recipient were also rated positively (82%). Weaknesses in support from GPs mainly involved the lack of information on advice and assistance services (55%) as well as frequently not identifying or involving caregivers as such soon enough (42%). Results from regression analysis show that the last two aspects play a major role in subjective satisfaction amongst family caregivers with support from GPs. Conclusions: We recommend that GPs undergo further training to reinforce awareness that the care triad of needs, requirements and stresses amongst family caregivers also plays a vital role in care outcomes. With this in mind, general practice staff should adopt a pre-emptive strategy towards approaching family members about potential issues and informing them about existing assistance and support services. Keywords: Family caregivers, General practitioners, Identification, Stresses, Needs, Care, Support * Correspondence: julian.wangler@unimedizin-mainz.de Centre for General and Geriatric Medicine, University Medical Centre Mainz, Am Pulverturm 13, 55131 Mainz, Germany © The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 2 of 12 Background as dementia by arranging for advisory services or en- The European Union has more than 130 million people couraging family members to use psychosocial support aged 60 or older; the proportion of very old people is services. This also helps prevent burnout amongst care- rapidly growing [1]. This involves a constantly growing givers and crises in a care situation [24]. need for care and support. Some 3.4 million people in The main challenges for the primary care setting in Germany were classified as requiring care at the end of dealing with family caregivers relate in particular to the 2017; around 5 million receive informal care and sup- early identification of caring relatives, the splitting of port according to estimates [2–4]. caregivers and those in need of care on different physi- Care is mostly administered by individual caregivers in cians, the knowledge of the individual care situation as a domestic setting; most of them provide this long-term well as information and advice activities. However, only care to persons in need without charge [2, 5]. More than a few studies have been presented on these aspects to 16% of 40 to 85-year-olds provide regular assistance to date. Various authors explain why identifying family at least one person in coping with everyday life accord- caregivers early may pose a challenge to GPs: Caring ing to the German Ageing Survey [6, 7]. The responsibil- relatives often do not see themselves as caregivers, but ity is often shared amongst family caregivers, female rather define themselves primarily in relation to the per- family members usually bearing the brunt of it [8, 9]. son being cared for (e.g. spouse, child) [9, 26, 33–35]. In Some studies have shown that the act of caregiving addition, family carers do not always talk to their own may involve a subjective sense of purpose, responsibility family doctor about their care situation, which occurs and lowered risk of mortality [10–13]. Even so, shoul- especially when the family member being cared for does dering this responsibility often entails a high level of not have the same GP as the family caregiver [8]. subjective stress with increased health risks. Family care Furthermore, GPs tend to place priority on the care re- correlates far higher to mental health issues such as high cipient so that they may lose sight of the health and psy- levels of distress and depression than it does to physical chosocial situation of the family caregiver [27, 35–37]. conditions [14–18]. Some caregivers are overwhelmed In addition, the research literature addresses the prob- with the disease-specific decisions they have to make if lem that GPs are not always sufficiently familiar with the they have not made the appropriate preparations and individual care situation of caregivers, which among preventive measures have not been taken [8, 19–24]. other things is related to time and resource problems GPs play an important role in supporting family care- [24, 26]. While various support services aimed at miti- givers [25, 26]. Due to their position in the German gating the negative effects of home care have been estab- health care system, they perform extensive primary care lished, caregivers use these services rarely [23, 24, 28]. tasks. GPs are the first point of contact for patients and Overall, there are currently no studies that allow a therefore often familiar with their patients and the pa- broader picture of the extent to which the problems tients’ family members for many years; there is a trusting mentioned occur in everyday practice in GP care. This doctor-patient relationship [5, 25, 27]. A survey of doc- study therefore takes up these challenges and examines tors in the German National Association of Statutory them from the perspective of caregivers. However, it Health Insurance Physicians (Kassenärztliche Bundesver- goes beyond that by exploring the needs, expectations einigung) concluded that 59% of family caregivers con- and experiences of family caregivers with regard to GP’s sult GPs on their care responsibilities [28]. support. Apart from diagnosis and treatment of health prob- lems, GPs are in a position to provide information, Research interest advice and (emotional) support by talking to family care- Since there is a lack of reliable studies on the type and givers as well as to gauge the situation and anticipate po- degree of support from GPs or desires and expectations tential future needs for care [2, 27–29]. In order to from family members being cared for, the aim of this ex- support GPs in dealing with family caregivers, the ploratory survey was to elucidate the need for support, German College of General Practitioners and Family specifically focusing on GP care. The research interest is Physicians (DEGAM) developed the guideline “Family concentrated in following issues: Caregivers” [30]. Recognising the needs of family caregivers in time al- The importance of support from GPs for family lows steps to be taken to ensure stabilisation and quality caregivers of life conducive to effective care. Providing information The support requirements of family caregivers with on support and assistance services (e.g. care centres, out- respect to GPs patient mental health services, dementia networks) plays a major role in this [30–33]. GPs are able to help family  The extent to which support from GPs matches the members prepare for the consequences of diseases such requirements, desires and expectations of family Wangler and Jansky BMC Family Practice (2021) 22:47 Page 3 of 12 caregivers respectively the challenges and problems regard to the GP’s support of family caregivers (e.g. family caregivers are confronted with identification of caregivers in everyday practice, address- ing specific needs of caregivers and individual care Indications of influential factors regarding the settings) were integrated into the item sets. experienced support from GPs that might have a Sociodemographic characteristics encompassed gen- moderating effect on the satisfaction of family der, age, academic qualification, occupation, and domes- caregivers with the GP’s support tic environment. Any potential to optimise support given by GPs The internal consistency was calculated for all scales used. This can be described as good especially for the Methods item sets at the center of the study: Study design The study was designed as an Internet-based survey of I think it is important that the GP... (question 14, see (informal) family caregivers. Researchers have shown Table 1); Cronbachs α = .891 that online surveys as a method for collecting data can The GP I consult in care matters... (question 15, see achieve a lot of informative value, representativeness and Table 1); Cronbachs α = .832 quality, especially with regard to specific target groups. For instance, Gosling et al. [38] compared a large Inter- net sample with a set of 510 published traditional sam- Recruitment and participants ples, showing a high degree of diversity of the Internet The survey target group included all kinds of family sample with regard to sociodemographic variables such caregivers. In order to obtain the broadest possible pic- as gender, socioeconomic status, geographic region, and ture of the reality of care in Germany, the inclusion cri- age. In addition, the authors state that Internet surveys terion was deliberately kept general. The initial question are not adversely affected by nonserious or repeat re- determines whether at least one relative, friend or neigh- sponders compared to traditional methods. bour has been regularly supported, cared for or (other- The investigation is part of a broader context, Dem- wise) looked after in the last 12 months. In this way, a StepCare, a model project for outpatient medical and wide range of different care constellations should be nursing care in dementia, itself part of a the broader included. innovation fund project supported by the German Fed- The survey was conducted online using the LimeSur- eral Joint Committee [39]. vey tool between January and July 2020 after a pretest. The anonymous survey was posted in a total of seven- Survey method teen German-language web forums involving or solely The questionnaire was based on desk research, results focused on family care. This survey design ensured from a focus group with eight GPs, and meetings with enough outreach to address caregivers often operating in family caregivers (see Multimedia Appendix 1). Develop- an informal setting. An anonymous online survey raised ing the questionnaire involved generating a catalogue of the chances of truthful responses without pressurising items relevant to practical support for family caregivers the survey target group to participate [38]. from GPs. Thirty-two clear-cut items were created to- Participants were recruited in health and care- wards developing the two key item sets (questions 14 related discussion forums online. The list of forums and 15) and then reduced to the most important state- was selected mostly using search engines such as ments according to the opinion and experience of the Google and Bing, but also by researching web direc- doctors involved. tories provided by several specialist organisations. We The two item sets were then placed one after the other used certain keywords such as caregivers, family care in the questionnaire for the respondents. They were then and carers to search for as many relevant forums as asked to state which aspects of support from GPs were possible. The selected forums were usually embedded most important to them. Further on, these items were in general information portals on the subject of care. transferred to the personal experience to elucidate the These websites are intended to support family care- extent to which the respondents’ expectations and de- givers across the board on a wide variety of questions sires were reflected in the reality of the support they re- relating to care in a domestic setting (no specific clin- ceived (see Table 1). The problems and challenges that ical pictures) and enable an exchange. were found in the course of the literature search with After that, we contacted the forum admins and asked for permission to recruit for the survey. 17 of the 29 for- The focus is on targeted support from GPs with outpatient case and ums gave their permission. A link to the online survey crisis management guided by care experts and adapted to need. Apart to invite participants was posted in a forum thread stat- from that, DemStepCare aims to raise awareness and capability in dealing with dementia amongst GPs in a comprehensive approach. ing the study purpose and procedure. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 4 of 12 Table 1 Care support needs from general practitioners compared to actual support by importance (answer categories: Very/ moderately important or completely agree/somewhat agree) It’s important to me that the general practitioner... Very The general practitioner I consult in care matters... Completely important/ agree/ Moderately Somewhat important agree (N = 612) (N = 438) ... is familiar with everyday life and challenges of caring 85% ... is familiar with everyday life and challenges of caring for 72% for family members. family members. … is familiar with my personal situation as a caregiver. 80% … is familiar with my personal situation as a caregiver. 71% … feels responsibility for the issues facing people 85% … feels responsibility for the issues facing people caring for 82% caring for family members and provides advice and family members and provides advice and assistance. assistance. … does not wait for me to raise issues with the GP 68%** … does not wait for me to raise issues but proactively 18%** but proactively addresses issues. addresses them. … provides emotional support such as 57%* … provides emotional support such as by giving 23%* encouragement during care. encouragement during care. … makes decisions with me on caring for the person 74%* … makes decisions with me on caring for the person 48%* in my care. requiring care. … sees not only the needs of the person in my care 76% … sees not only the needs of the person in my care but also 60% but also my opinions, needs and stresses. my opinions, needs and stresses. … includes the person in my care in decisions and 83% … considers the person in my care in decisions and responds 82% responds to his or her requests. to his or her requests. … encourages me to raise my own health concerns. 32% … encourages me to address my own health concerns. 23% … has enough time for me. 85%** … has enough time for me. 29%** … performs home visits to relieve me and get to 75%** … performs home visits to relieve me and get to know the 23%** know the person in my care in our home environment. person in my care in our home environment. … gives me time to consider important decisions on 59% … gives me time to consider important decisions on care. 81% care. … tells me about local support and assistance services. 85%* … tells me about local support and assistance services. 55%* … makes arrangements for support and assistance 83%** … makes arrangements for support and assistance services for 6%** services for me. me. … advises me on legal aspects such as power of 80%** … advises me on legal aspects such as power of attorney, 13%** attorney, care assistance, and driving. care assistance, and driving. … conducts regular follow-up observations. 70%* … conducts regular follow-up observations. 41%* … makes diagnoses early. 78%* … makes diagnoses early. 51%* … manages and provides medical treatment to my 52% … manages and provides medical treatment to my family 45% family member. member. … arranges doctors specialised in the field for us. 85% … arranges doctors specialised in the field for us. 95% … explains the situation to the person in my care in 85% … explains the situation to the person in my care in ways 85% ways that he or she can understand, therefore that he or she can understand, therefore supporting me. supporting me. … is early to acknowledge me as the caregiver with 85%** … is early to acknowledge me as the caregiver with the 42%** the awareness that I am responsible for caring for my awareness that I am responsible for my family member’s care family member. from the beginning. Significance: *p < .05 **p < .001 Data analysis distribution of the groups to be distinguished and the We analysed the data using SPSS 23.0 for Windows. In fact that the samples come from the same population addition to the descriptive analysis, a t-test with inde- [40]. First, the answers to the two item sets used in the pendent samples was used to identify significant differ- questionnaire were compared with a t-test (desired sup- ences between two groups. Two levels of a significance port from the GPs vs. experienced support, see Table 1). were tested for (mean difference at p < .05 and p < .001). Subsequently, a cross-tabular breakdown was used to This parametric method has a high test strength and is search for items which show highly significant differ- considered to be statistically robust. The necessary con- ences (p < .001) regarding the general satisfaction with ditions were met with the number of cases, the normal the GP’s support (see Tables 2 and 3). Wangler and Jansky BMC Family Practice (2021) 22:47 Page 5 of 12 Table 2 Contingency table broken down into satisfaction items with support from general practitioners; columns only contain completely agree or somewhere agree answer categories The general practitioner I consult in care matters... (N = 438) … sees not only the needs of … tells me about … is early to acknowledge me as the caregiver the person in my care but also local support and with the awareness that I am responsible for my my opinions, needs and stresses. assistance services. family member’s care from the beginning. How would you rate the support Very 69%** 76%** 59%** that your GP has given you in good/ caring for your family member? Mostly good Mostly 44%** 21%** 11%** not so good/ Not good at all Significance: **p < .001 We used binary logistic regression analysis at p < 0.05 grade, 7% university graduation, 17% other academic to test for potentially influential factors. Like classic lin- qualification. ear regression, binary logistic regression is a method for Occupation: 9% in full-time employment, 51% in the statistical explanation of the occurrence of values of part-time employment, 15% retired, 17% not in em- the dependent variables that are caused by the influences ployment, 8% other of one or more independent variables. The peculiarity of binary logistic regression is that it is used for the special situation in which the dependent variable is binary- Living conditions of family caregivers coded and therefore only has two characteristics. The Of the respondents, 39% provided care alone whereas aim of the study was to identify indications of how dif- 61% shared their care responsibilities with another per- ferent aspects of the experienced support from GPs son. The respective care recipient had been given a care affect the general satisfaction with the GP’s support. Ac- level (German: ‘Pflegestufe’ ) according to 49% and no cordingly, we analysed what influence the individual care level according to 39% of the respondents; 12% did items regarding personal experience (question 15) could not know. With regard to the duration of care, 22% have on satisfaction with GP’s support (question 20). stated that they had been providing care for less than a The ordinal independent variables were treated as con- year, 34% for one to 2 years, 27% three to 5 years and tinuous variables. 17% for 5 years or longer. Care recipients were usually a All sociodemographic characteristics (gender, age, aca- parent or parent-in-law (54%); followed by husband, wife demic qualification, occupation, and domestic environ- or life partner (22%); own child, foster child, godchild or ment) were also included in the analysis. child-in-law (14%); or another relative (10%). Of the re- spondents, 57% were living in the same household as the care recipient. Results With respect to the physical condition of the care re- Sample cipient, 88% indicated severe disabilities whereas 64% A total of 612 people who had been caring for at least responded with severe cognitive disabilities. Care activ- one family member, friend or neighbour on a regular ities focused on assistance and mental stimulation dur- basis in the last 12 months according to their own state- ing everyday life at 94%, household chores and ments completed the online survey; another 23 partici- assistance in household chores at 84%, assistance in per- pants took part but did not complete the survey and sonal care, nutrition and mobility at 79%, and arranging were not included in the analysis. The sample popula- for assistance and care such as filling out and submitting tion was as follows: applications and holding appointments with the author- ities or doctors at 72%. Medical and nursing activities Gender: 93% female, 7% male were carried out by 40% of the respondents. Mean age: 54 (median: 55) Academic qualification: 9% lower secondary, 25% The extent of services which the person requiring care is entitled to upper secondary, 42% high school matriculation depends on the class of nursing care. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 6 of 12 Table 3 Contingency table; column only shows completely agree and somewhat agree response categories Someone recently said: “My GP can usually help me out when I ask about care for my family member.” How far does this apply to your GP? (N = 438) How would you rate the support that your GP Very good/ Mostly 95%** has given you in caring for your family member? good Mostly not so 16%** good/ Not good at all Significance: **p < .001 Of the respondents, 69% stated that the burden on information in organising care. GPs told 61% of these re- their health in providing care was very severe or moder- spondents about supporting services at least once. Re- ately severe as opposed to 31% less severe or negligible. spondents were mostly told about care services and Of the former, 84% were providing care activities on welfare centres (56%), day centres or short-term care their own compared to 59% of those sharing the care ac- (34%) and assistance for everyday situations (31%). tivities (p < .001). Regarding emotional burden, 58% assessed their own stress from providing care as very se- Satisfaction with support from general practitioners vere or moderately severe. In total, 68% of the respondents who consulted a GP in care matters felt very well or moderately well supported Importance of the general practitioners and support compared to 32% who did not feel well supported or needs supported at all. 70% of the respondents state that the GPs play a very or moderately important role as contact GP can usually be of great help when it comes to a ques- persons for matters of care according to 67% of the re- tion about care. spondents as opposed to 33% for whom GPs played little Following the comparison of desired support from the or no role. Correspondingly, 72% stated that they con- GPs and experienced support (see Table 1), a cross- sulted their own or someone else’s GP in care matters; tabular breakdown was used to search for items which 39% stated that they would often consult their GP, 15% show highly significant differences (p < .001) regarding occasionally, and 18% somewhat seldom. the general satisfaction with the GP’s support (see Ta- In line with the research interest, the respondents first bles 2 and 3). received an item set in which they could state which as- Family caregivers who were moderately or very unsat- pects of support from the GP were most important to isfied with the support they were given by GPs com- them. Further on, these items were transferred to the plained of the lack of three striking support aspects personal experience to reveal the extent to which the re- compared to those that were satisfied (see Table 2). spondents’ expectations and desires were reflected in the These comprised directly addressing and properly con- reality of the support they received. Here, only those sidering family caregivers on the one hand, and informa- caregivers who had consulted their doctor with regard to tion on assistance and support services on the other. care were surveyed (N = 438). A further breakdown confirms this finding. Respon- As shown in Table 1, support from GPs for family dents found the willingness and ability of GPs to pro- caregivers was received favourably in terms of psycho- vide assistance in organising care crucial to general social support. These results reflect the GP’s approach satisfaction with the support they received from GPs as contact person familiar with the caregiver’s situation (see Table 3). while dedicating a great deal of attention to the person in need of care. Factors affecting satisfaction with support from general However, there were also weaknesses. For example, practitioners the desires of family caregivers for a proactive role from The results from binary logistic regression analysis reveal GPs in recognising and anticipating care issues were not a number of stronger and weaker factors for subjective always fulfilled. Family caregivers also expressed a desire satisfaction amongst family caregivers with their GPs for a strong advisory role of the GP in arranging the (see Table 4). For example, the respondents appreciated conditions for care as well as legal aspects and informa- it when GPs knew about their situation in general and at tion on assistance and support services. personal level (Items 1, 2) as well as signalled responsi- Referring to those respondents that consulted a GP in bility with regard to the role they had taken (Item 3). care matters, 75% saw this as moderately or very import- Consideration of individual needs and desires of care re- ant with respect to providing a source for advice and cipients also represented an important predictor (Item Wangler and Jansky BMC Family Practice (2021) 22:47 Page 7 of 12 Table 4 Binary logistic regression, influential factors identified (N = 438) Dependent variable: Satisfaction with support from general practitioners (“How would you rate the support that your GP has given you in caring for your family member?”) Independent variable Omnibus Log- Cox Nagelkerke Hosmer- Coefficient Exp Significance 95% Standard (possible influential test (Step Likelihood & R Lemeshow of (B) confidence error factor or predictor) 1: Model) Snell Chi regression interval The general R β Exp (B) practitioner I consult in care matters... 1) … is familiar with .000 403.368 .286 .400 .000 2.889 17.972 .000 10.709; .264 everyday life and 30.162 challenges of caring for family members. 2) … is familiar with my .000 431.158 .239 .335 .000 2.522 12.448 .000 7.654; .248 personal situation as a 20.246 caregiver. 3) … feels responsibility .000 413.533 .269 .376 .000 3.455 31.659 .000 15.090; .378 for the issues facing 66.422 people caring for family members and provides advice and assistance. 4) … does not wait for .037 546.806 .010 .014 .000 .585 1.795 .044 1.017; 3.169 .290 me to raise issues but proactively addresses them. 5) … provides .000 510.691 .088 .123 .000 1.989 7.309 .000 3.436; .385 emotional support such 15.548 as by giving encouragement during care. 6) … makes decisions .004 542.802 .019 .026 .000 .598 1.818 .004 1.208; 2.736 .209 with me on caring for the person in need of it. 7) … sees not only the .000 531.878 .043 .060 .000 .916 2.498 .000 1.656; 3.769 .210 needs of the person in my care, but also my opinions, needs and stresses. 8) … considers the .000 433.072 .236 .330 .000 3.072 21.579 .000 11.093; .340 person in my care in 41.978 decisions and responds to his or her requests. 9) ... encourages me to .000 486.108 .138 .193 .000 3.085 21.861 .000 6.790; .597 raise my own health 70.391 concerns. 10) … has enough time .058 547.502 .008 .012 .000 .442 1.555 .059 .983; 2.462 .234 for me. 11) … conducts home .000 486.108 .138 .193 .000 3.085 21.861 .000 6.790; .597 visits to relieve me and 70.391 to make an impression of the person in my care in our home environment. 12) … gives me time to .122 548.787 .005 .008 .000 .392 1.480 .119 .904; 2.422 .251 consider important decisions on care. 13) … tells me about .000 441.421 .221 .309 .000 2.311 10.087 .000 6.299; .240 local support and 16.153 assistance services. 14) … makes .016 545.380 .013 .018 .000 1.299 3.667 .037 1.079; .624 arrangements for 12.463 support and assistance services for me. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 8 of 12 Table 4 Binary logistic regression, influential factors identified (N = 438) (Continued) Dependent variable: Satisfaction with support from general practitioners (“How would you rate the support that your GP has given you in caring for your family member?”) Independent variable Omnibus Log- Cox Nagelkerke Hosmer- Coefficient Exp Significance 95% Standard (possible influential test (Step Likelihood & R Lemeshow of (B) confidence error factor or predictor) 1: Model) Snell Chi regression interval The general R β Exp (B) practitioner I consult in care matters... 15) … advises me on .000 522.476 .063 .088 .000 2.343 10.412 .000 3.197; .602 legal aspects such as 33.906 power of attorney, care assistance, and driving. 16) … conducts regular .028 546.346 .011 .015 .000 .464 1.590 .030 1.047; 2.416 .213 follow-up observations. 17) … makes diagnoses .079 548.086 .007 .010 .000 .360 1.433 .080 .958; 2.143 .205 early. 18) … supports and .000 527.205 .053 .074 .000 1.040 2.828 .000 1.842; 4.342 .219 provides therapy for my family member. 19) … arranges doctors .000 517.243 .074 .104 .000 2.845 17.208 .000 5.039; .627 specialised in the field 58.767 for us. 20) … explains the .000 467.789 .173 .242 .000 2.694 14.793 .000 7.570; .342 situation to the person 28.908 in my care in ways that he or she can understand, therefore supporting me. 21) … is early to .000 452.523 .201 .281 .000 2.422 11.270 .000 6.378; .290 acknowledge me as the 19.916 caregiver with the awareness that I am responsible for my family member’s care from the beginning. Coding of dependent variables: 0 = Completely agree/Somewhat agree; 1 = Somewhat disagree/Completely disagree a 2 2 Classification according to Cohen [41]: low or weak explained variation | Nagelkerke R | = <.1; medium or moderate explained variation | Nagelkerke R | = .13–.3; high or strong explained variation | Nagelkerke R | = >.35 8), together with ability to support the caregiver with ex- stating that they did so frequently. This confirms pre- planations and ideally mediation between the caregiver vious studies that emphasised the role of support and care recipient (Item 20). Information on local advice from GPsinthistarget group [4, 9, 28]. From the and assistance services played a major role in the satis- point of view of family caregivers the importance of faction felt by the respondents (Item 13). GPs identifying the GP has further increased in recent years [28]. and addressing the caregiver as such early on also The results show that it is particularly important to counted as an influential factor (Item 21). the respondents that GPs feel responsible for the situ- No significant differences were found with regard to ation of caring relatives, that they can empathise with the sociodemographic variables surveyed. Accordingly, them and that they are able to see the individual care no sociodemographic variables could be identified as in- situation. Accordingly, early identification of caregivers fluential factors. by the doctor is desired. Joint decision-making and tar- geted referral to support services and specialists are also Discussion important to the respondents. From the point of view of Principal findings and comparison with prior work a majority of those surveyed, GPs are key players in pro- The results from the survey showed first of all that viding information on care. As a result, by coming to the GPs act as central contact persons in whom family assistance of family caregivers, GPs play a major role in caregivers place high levels of ability and trustworthi- successful outcomes of family care and long-term stabil- ness. A good three out of every four respondents isation of family caregivers [5, 26]. In an expert report, (72%) consulted a GP in care matters, with 54% the National Association of Statutory Health Insurance Wangler and Jansky BMC Family Practice (2021) 22:47 Page 9 of 12 Physicians (Kassenärztliche Bundesvereinigung) points affected by home care. However, this kind of cooper- out that caring relatives need ‘natural’ contact in the ation would seem beneficial and urgent. Family members health care system who, in addition to caring for those need arrangements for practical everyday assistance, fi- in need of care, also keeps an eye on the physical health nancing opportunities, legal advice, coping strategies and and emotional concerns of those giving help [28, 42]. relief in cases of overburden and health deterioration. Due to their position in the German health system, GPs Arranging assistance networks for patients and family are particularly well suited for this. Other studies show members may substantially reduce the danger of burn- that family caregivers attach great importance to family out amongst caregivers [31]. However, this would de- doctors because they want a permanent, trustworthy pend on reinforcing interdisciplinary communications contact who can take on advisory and coordinating tasks between health sectors as well as setting up formal and [24]. From the point of view of the family caregivers, fa- informal cooperation networks [45, 46] while giving GPs miliarity of GPs with personal care situations, approach- a solid knowledge basis on local advice sources to ensure ability in a variety of issues and directly addressing care fast, unbureaucratic referrals. recipients proved especially important. The results of the present study show that family care- However, the results show that GPs do not always givers are particularly satisfied when GPs consistently completely match the requirements. For example, GPs refer to offers of help and advice. This corresponds to did not always show the same level of consideration for widespread demands for putting GPs into the role of the needs – health and otherwise – of the family care- health mediators, who specifically promote health, refer givers as they did for their patients as care recipients. patients to suitable offers of help and, thus, contribute Research literature has addressed a tendency to focus on more to prevention [47]. This also applies to the support care recipients while reducing family caregivers to their and (preventive) stabilisation of family caregivers. Mean- functional role and marginalising the psychosocial effects while, care concepts have been developed to structurally of providing care [27, 35–37]. Another problem is that strengthen the GP setting as a contact for this target general practice staff do not always identify family care- group. For example, a KBV concept aims to prevent or givers early on for them to be able to involve family minimise the health risks and limitations for caregivers caregivers in this role. In this context, one of the difficul- [48]. The concept starts with the central key function of ties is that general practice staff members are often not general practice and is intended to enable early individ- sufficiently trained in specific tasks such as identifying ual support through a targeted situation analysis and ad- and supporting family caregivers [43]. Apart from that, vice. The care concept intends to determine the the results of the present study state that only some GPs individual care-related health risk of the caregiver and, support family caregivers with information on advice on this basis, to offer further advice on physical and psy- and assistance services. This generally corresponds with chosocial issues. However, this requires local (health) the finding that GPs often show insufficient general networks as well as support and (psychosocial) counsel- awareness of external forms of assistance for family care- ling actors with whom GPs actively cooperate [24]. A givers [24, 31] and are not involved in local health net- systematic review by Plöthner et al. points out the im- works [44]. portance of strengthening outpatient care structures The regression analysis has shown that the knowledge [49]. The researchers draw the conclusion that establish- of the personal care situation and the ability to mediate ing an outpatient care system, which supports families between the needs of caregiver and care recipient is im- and friends in providing (elderly) care, while meeting the portant as an influencing factor for subjective satisfac- needs and wishes of informal caregivers, is of high tion among family caregivers with their GPs. Especially relevance. the advisory activities with regard to Information on Apart from that, there is some discussion on the intro- local advice and assistance services are of great duction of case and support managers to assist GPs in relevance. supporting family care situations [50]. One of the bene- Particularly in this context, there is a need for fits may be an improvement in analysis and control of optimization from the perspective of caregivers. Improv- the treatment situation for the care recipient as well as ing and integrating GPs into other bodies and organisa- early stabilisation and advice for family caregivers. tions giving advice and support such as care centres, outpatient mental health services and dementia networks Optimisation approaches would provide essential leverage to the effectiveness of Early involvement of family caregivers is essential to- support given by GPs to family caregivers, who have re- wards good care and promotes satisfaction and mutual ceived little attention from studies up to now. Advice trust and confidence [51]. Therefore, further training services are especially scarce in rural areas, reducing the would help GPs to be more aware that addressing the number of opportunities that GPs have to refer people needs of family caregivers is crucial to the long-term Wangler and Jansky BMC Family Practice (2021) 22:47 Page 10 of 12 success of care in a domestic setting [36, 37, 52, 53]. background. So it is likely that they were not recruited Practice staff could undergo specific training pro- in adequate numbers. Studies have shown that caregivers grammes as well in order to help identify and support with a migration background generally have only limited (informal) caregivers. Home visits may help understand access to sources of advice and information as well as care issues more effectively. medical support, so that this group is presumably under- Stabilisation strategies in consultations with patients represented in the present study [55]. and family members should not be underestimated as For the mentioned subgroups of family caregivers it important skills [31]. GPs could contribute to orienta- can be assumed that the online survey systematically tion and calming and otherwise boost resilience in con- leads to underrepresentation. Accordingly, it may be sultations with patients and family members. assumed that recruiting family caregivers from other Thorough and early information on local assistance settings – such as waiting rooms in general practices – and support services would allow family caregivers ac- may lead to more generalisable results on family care- cess to information on organising care in good time givers as a whole. Such studies are warranted especially [10, 53]. Giving family members the corresponding with regard to optimising general medical practice with support may improve outpatient care so as to allow regard to the needs of family caregivers. people requiring care to stay within their home set- ting longer [24, 54]. Conclusions Family caregivers play a vital role, as caring for infirm Limitations and directions for future research people reliant on care in a domestic setting would not Due to its general focus, the study should include family be possible without them. GPs are essential in support- caregivers from as many areas as possible and, thus, ing them, especially when providing information on allow the broadest possible picture regarding the ques- planning and organising care as well as advice in other tion of GP support. In the course of the study it was fields alongside psychosocial support. possible to recruit a sociodemographically heteroge- The results show that family caregivers place GPs in a neous sample of caregivers, in which, among other special role of supporting. From respondents’ past ex- things, different care constellations, age groups and edu- perience, GPs live up to their responsibility in different cational backgrounds are represented (see description of ways. Even so, there are also indications that general the sample). However, the study is unable to produce a practices have not always been successful in satisfying all representative body of opinion due to the limited num- the needs of family caregivers. ber of cases and the self selection of respondents partici- We recommend that GPs undergo further training to pating in the survey. In addition, the fact that an online reinforce awareness that the care triad of needs, require- survey was carried out also influences the question of ments and stresses amongst family caregivers also plays representativeness. In the case of the present work, the a vital role in care outcomes. With this in mind, general recruitment of family caregivers via GPs would have practice staff should adopt a pre-emptive strategy to- meant a considerably greater expenditure of time and re- wards approaching family members about potential is- sources. So an online survey of family caregivers was an sues and informing them about existing assistance and easy-to-implement solution in which a high number of support services. cases and a heterogeneous respondent group could be recruited. Supplementary Information A comparison with other studies and official statistics The online version contains supplementary material available at https://doi. shows that the sample does not reflect the actual distri- org/10.1186/s12875-021-01381-4. bution of sociodemographic characteristics among car- ing relatives [30]. For example, the spouses or life Additional file 1. Questionnaire (translation). partners are less represented in the sample, while the group of other relatives is proportionally more repre- Abbreviation sented. It can also be assumed that certain sub-groups GP(s): General Practitioner(s) within the group of family caregivers are more difficult to reach via an online survey. In this context, it should Acknowledgements be noted that older people (70 years and older) are rela- Not applicable. tively unwilling to take part in online activity, resulting in a relatively low proportion of older family caregivers Authors’ contributions The authors alone are responsible for the content and the writing of the in the sample population [38]. Since the survey was ex- paper. JW prepared, coordinated and implemented the project. Both JW and clusively placed in German-language web forums, there MJ contributed to the project design, analysis of transcripts and drafting of was a language barrier for people with a migration the manuscript. Both authors read and approved the final manuscript. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 11 of 12 Funding 9. DAK. DAK-Pflege-Report 2015 [DAK care report 2015]. Hamburg: DAK- This research was not funded. Gesundheit; 2015. 10. Wuttke-Linnemann A, Henrici CB, Müller N, Lieb K, Fellgiebel A. Bouncing back from the burden of dementia: predictors of resilience from the Availability of data and materials perspective of the patient, the spousal caregiver, and the dyad — an All data generated or analysed during this study are included in this exploratory study. GeroPsych. 2020;33(3):170–81. https://doi.org/10.1024/1 published article. 662-9647/a000238. 11. Bestmann B, Wüstholz E, Verheyen F. Belastung und sozialer Zusammenhalt. Ethics approval and consent to participate Eine Befragung zur Situation von pflegenden Angehörigen. WINEGWissen All methods were carried out in accordance with relevant guidelines and 04. Hamburg: Techniker Krankenkasse; 2014. regulations. 12. Döhner H, Kofahl C, Lüdecke D, et al. Services for supporting family carers During this study, no sensitive patient data was gathered or clinical tests of older dependent people in Europe: characteristics, coverage and usage. performed. This is a strictly anonymised survey of a total of 612 informal Hamburg: University Medical Centre of Hamburg Eppendorf; 2007. caregivers. The Ethics Commission of the State of Rhineland-Palatinate, 13. O’Reilly D, Connolly S, Rosato M, Patterson C. Is caring associated with an Germany, informed us that approval by an ethics committee was not increased risk of mortality? A longitudinal study. Soc Sci Med. 2008;67(8): necessary. 1282–90. https://doi.org/10.1016/j.socscimed.2008.06.025 PMID: 18667262. Written informed consent for participation was obtained from all participants 14. Dias R, Santos RL, Sousa MF, et al. Resilience of caregivers of people with before the start of the study. Before the actual survey started, the dementia: a systematic review of biological and psychosocial determinants. respondents received information about the aim and purpose of the study Trends Psychiatry Psychother. 2015;37(1):12–9. https://doi.org/10.1590/2237- on the first page of the online questionnaire and were informed that it was 6089-2014-0032 PMID: 25860562. an anonymous survey in accordance with the existing data protection 15. Pinquart M, Sörensen S. Differences between caregivers and noncaregivers standards. Furthermore, it was made clear that the data will only be used for in psychological health and physical health: a meta-analysis. Psychol Aging. scientific purposes. Acknowledgment and consent to the conditions of the 2003;18(2):250–67. https://doi.org/10.1037/0882-7974.18.2.250 PMID: survey was given; only then was it possible to begin the survey. 16. Joling K, Windle G, Dröes R-M, et al. Factors of resilience in informal Consent for publication caregivers of people with dementia from integrative international data Not applicable. analysis. Dement Geriatr Cogn Disord. 2016;42(3–4):198–214. https://doi. org/10.1159/000449131 PMID: 27669054. 17. Roepke SK, Mausbach BT, Patterson TL, et al. Effects of Alzheimer caregiving Competing interests on allostatic load. J Health Psychol. 2011;16(1):58–69. https://doi.org/10.11 The authors declare that they have no competing interests. 77/1359105310369188 PMID: 20709885. Received: 19 October 2020 Accepted: 28 January 2021 18. Linnemann A, Hilsenbek MM, Lelieveld I, Geschke K, Wolf D, Fellgiebel A. Comparison of psychosocial and medical characteristics of patients with dementia and their primary informal caregivers between inpatient and day clinic treatment. Dementia. 2020;19(3):606–17. https://doi.org/10.1177/14713 References 01218781130 PMID: 29886778. 1. WHO Regional Office for Europe. Home Care in Europe. Copenhagen: WHO/ 19. Schulz R, Beach SR. Caregiving as a riks factor for mortality. The Caregiver Europe; 2015. Health Effects Study. JAMA. 1999;282(23):2215–9. https://doi.org/10.1001/ja 2. Geyer J, Schulz E. Who cares? Die Bedeutung der informellen Pflege durch ma.282.23.2215 PMID: 10605972. Erwerbstätige in Deutschland [Who cares? The importance of informal care 20. Beach SR, Schulz R, Williamson GM, Miller LS, Weiner MF, Lance CE. Risk given by working people in Germany]. DIW-Wochenbericht. 2014;81:294– factors for potentially harmful informal caregiver behavior. J Am Geriatr Soc. 2005;53(2):255–61. https://doi.org/10.1111/j.1532-5415.2005.53111.x PMID: 3. Nowossadeck S, Engstler H, Klaus D. Pflege und Unterstützung durch Angehörige [Care and support by family members]. Report Altersdaten 1/ 21. Cherry MG, Salmon P, Dickson JM, Powell D, Sikdar S, Ablett J. Factors 2016. Berlin: Deutsches Zentrum für Altersfragen [German Centre of influencing the resilience of carers of individuals with dementia. Rev Clin Gerontology]; 2016. Gerontol. 2013;23(4):251–66. https://doi.org/10.1017/S0959259813000130. 4. Schneekloth U, Wahl HW, editors. Möglichkeiten und Grenzen selbstständiger 22. Schulz R, Sherwood P. Physical and mental health effects of family Lebensführung in privaten Haushalten [Opportunities and limitations to caregiving. Am J Nurs. 2008;108(9 Suppl):23–7. https://doi.org/10.1097/01.NA independent living in private households], Abschlussbericht im Auftrag des J.0000336406.45248.4c PMID: 18797217. Bundesministeriums für Familie, Senioren, Frauen und Jugend [final report 23. Romero-Moreno R, Márquez-González M, Mausbach BT, Losada A. Variables commissioned by the Federal Ministry for Family Affairs, Senior Citizens, modulating depression in dementia caregivers: a longitudinal study. Int Women and Youth]. Munich; 2005. Psychogeriatr. 2012;24(8):1316–24. https://doi.org/10.1017/S1041610211 5. Connell CM, Boise L, Stuckey JC, et al. Attitudes toward the diagnosis and 002237 PMID: 22176670. disclosure of dementia among family caregivers and primary care 24. Geschke K, Scheurich A, Schermuly I, Laux N, Böttcher A, Fellgiebel A. physicians. Gerontologist. 2004;44(4):500–7. https://doi.org/10.1093/ Effectivity of early psychosocial counselling for family caregivers in general geront/44.4.500 PMID: 15331807. practitioner based dementia care. Dtsch Med Wochenschr. 2012;137(43): 6. Klaus D, Engstler H. Daten und Methoden des Deutschen Alterssurveys 2201–6. https://doi.org/10.1055/s-0032-1305320 PMID: 23076666. [Data and methods used in the German Ageing Survey]. In: Mahne K, Wolff 25. Brown CJ, Mutran EJ, Sloane PD, Long KM. Primary care physicians’ J, Simonson J, et al., editors. Altern im Wandel: Zwei Jahrzehnte Deutscher knowledge and behavior related to Alzheimer's disease. J Appl Gerontol. Alterssurvey [Ageing in transition: The German Ageing Survey two decades 1998;17(4):462–79. https://doi.org/10.1177/073346489801700404. on]. Wiesbaden: Springer VS; 2016. p. 25–42. 26. Greenwood N, Mackenzie A, Habibi R, Atkins C, Jones R. General 7. Klaus D, Tesch-Römer C. Pflege und Unterstützung bei gesundheitlichen practitioners and carers: a questionnaire survey of attitudes, awareness of Einschränkungen: Welchen Beitrag leisten Personen in der zweiten issues, barriers and enablers to provision of services. BMC Fam Pract. 2010; Lebenshälfte für andere? [Care and support in health disabilities: What 11:100. https://doi.org/10.1186/1471-2296-11-100 PMID: 21172001. contribution do people in the second half of life give to others?]. In: Mahne 27. Bulsara CE, Fynn N. An exploratory study of gp awareness of carer K, Wolff J, Simonson J, et al., editors. Altern im Wandel: Zwei Jahrzehnte emotional needs in Western Australia. BMC Fam Pract. 2006;7:33. https://doi. Deutscher Alterssurvey [Ageing in transition: The German Ageing Survey two org/10.1186/1471-2296-7-33 PMID: 16719930. decades on]. Wiesbaden: Springer VS; 2016. p. 185–200. 8. Schmidt M, Schneekloth U. Abschlussbericht zur Studie ‚Wirkungen des Pflege- 28. Kassenärztliche Bundesvereinigung [National Association of Statutory Health Weiterentwicklungsgesetzes’ [Final report from the study on the effects of the Insurance Physicians]. Versichertenbefragung 2018. Ergebnisse einer law concerning further development of care]. Berlin: Bundesministerium für repräsentativen Bevölkerungsumfrage [Results from a representative survey]. Gesundheit [Federal Ministry of Health]; 2011. Berlin; 2018. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 12 of 12 29. Lamura G, Mnich E, Wojszel B, et al. Erfahrungen von pflegenden 45. Prüfer F, Joos S, Milksch A. Die Rolle des Hausarztes in der kommunalen Angehörigen älterer Menschen in Europa bei der Inanspruchnahme von Gesundheitsförderung [The role of general practitioners in local health Unterstützungsleistungen. Ergebnisse des Projektes EUROFAMCARE promotion]. Prävention und Gesundheitsförderung. 2015;10(2):180–5. [Experiences of family members caring for older people using support https://doi.org/10.1007/s11553-015-0486-1. services in Europe. Results from the EUROFAMCARE project]. Z Gerontol 46. Kuske S, Graf R, Hartig M, Quasdorf T, Vollmar HC, Bartholomeyczik S. Geriat. 2006;39(6):429–42. https://doi.org/10.1007/s00391-006-0416-0. Dementia considered? Safety-relevant communication between health care 30. Deutsche Gesellschaft für Allgemeinmedizin und Familienmedizin [German settings: a systematic review. J Public Health. 2014;22(5):383–93. https://doi. College of General Practitioners and Family Physicians]: S3-Leitlinie org/10.1007/s10389-014-0630-y. ‘Pflegende Angehörige von Erwachsenen’ [S3-guideline for German General 47. Curbach J, Apfelbacher C, Knoll A, Herrmann S, Szagun B, Loss J, et al. Practice ‘Family Caregivers’]. https://www.degam.de/files/Inhalte/Leitlinien- J Evid Qual Health Care. 2018;131(2):66–72. https://doi.org/10.1016/j. Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-006_Pflegende%20A zefq.2018.02.001. ngehoerige/053-006l_DEGAM%20LL%20Pflegende%20Angeho%CC% 48. Kassenärztliche Bundesvereinigung [National Association of Statutory Health 88rige_4-3-2019.pdf. Accessed on 2 Dec 2020. Insurance Physicians]: Pflegende Angehörige: Ein Versorgungsprogramm [Caregivers: A care program]. https://kbv.de/media/sp/Eckpunkte_ 31. Laux N, Melchinger H, Scheurich A, et al. Improving general practitioners Pflegende_Angeh_rige.pdf. Accessed on 2 Dec 2020. guided dementia care. Dtsch Med Wochenschr. 2010;135(44):2175–80. 49. Plöthner M, Schmidt K, de Long L, Zeidler J, Damm K. Needs and https://doi.org/10.1055/s-0030-1267494. preferences of informal caregivers regarding outpatient care for the elderly: 32. Linden M, Horgas AL, Gilberg R, Steinhagen-Thiessen E. Predicting health a systematic literature review. BMC Geriatr. 2019;19(1):82. https://doi.org/1 care utilization in the very old: the role of physical health, mental health, 0.1186/s12877-019-1068-4 PMID: 30866827. attitudinal and social factors. J Aging Health. 1997;9(1):3–27. https://doi. 50. Reilly S, Miranda-Castillo C, Malouf R, et al. Case management approaches org/10.1177/089826439700900101 PMID: 10182408. to home support for people with dementia. Cochrane Database Syst Rev. 33. Löppönen M, Raiha I, Isoaho R, Vahlberg T, Kivelä S-L. Diagnosing cognitive 2015;1(1):CD008345. https://doi.org/10.1002/14651858.CD008345.pub2 PMID: impairment and dementia in primary health care – a more active approach is needed. Age Ageing. 2003;32(6):606–12. https://doi.org/10.1093/ageing/a 51. The Princess Royal Trust for Carers and Royal College of General fg097 PMID: 14600001. Practitioners. Supporting carers: an action guide for general practitioners 34. Höppner C, Schneemilch M, Lichte T. Pflegende Angehörige und ihre and their teams. London: RCGP; 2011. Belastungen in Hausarztpraxen identifizieren – Hindernisse und 52. Vollmar HC, Gräßel E, Lauterberg J, et al. Multimodale Schulung von Empfehlungen [Identifying Informal Carers and Their Burden in Family Hausärzten – Evaluation und Wissenszuwachs im Rahmen der Initiative Practices – Barriers and Recommendations]. Z Allg Med. 2015;91(7/8):310–4. Demenzversorgung in der Allgemeinmedizin (IDA) [Multimodal training for https://doi.org/10.3238/zfa.2015.0310%20130314. general practitioners – evaluation and development of knowledge in the 35. Carduff E, Finuance A, Kendall M, et al. Understanding the barriers to IDA initiative for dementia care in general practice]. J Evid Qual Health Care. identifying carers of people with advanced illness in primary care: 2007;101(1):27–34. https://doi.org/10.1016/j.zgesun.2006.12.005. triangulating three data sources. BMC Fam Pract. 2014;15:48. https://doi. 53. Donath C, Gräßel E, Großfeld-Schmitz M, et al. Effects of general practitioner org/10.1186/1471-2296-15-48. training and family support services on the care of home-dwelling 36. Burridge LH, Mitchell GK, Jiwa M, Girgis A. Consultation etiquette in general dementia patients - results of a controlled cluster-randomized study. BMC practice: a qualitative study of what makes it different for lay cancer Health Serv Res. 2010;10:314. https://doi.org/10.1186/1472-6963-10-314 caregivers. BMC Fam Pract. 2011;12:110. https://doi.org/10.1186/1471-22 PMID: 21087474. 96-12-110 PMID: 21970440. 54. Thyrian JR, Fiss T, Dreier A, et al. Life- and person-centred help in 37. Greenwood N, Mackenzie A, Harris R, Fenton W, Cloud G. Perception of the Mecklenburg-Western Pomerania, Germany (DelpHi): study protocol for a role of general practice and practical support measures for carers of stroke randomised controlled trial. Trials. 2012;13:56. https://doi.org/10.1186/1745- survivors: a qualitative study. BMC Fam Pract. 2011;12:57. https://doi.org/1 6215-13-56 PMID: 22575023. 0.1186/1471-2296-12-57 PMID: 21699722. 55. Ahmad M, van den Broeke J, Saharso S, Tonkens E. Persons with a migration 38. Gosling SD, Vazire S, Srivastava S, John OP. Should we trust web-based background caring for a family member with dementia: challenges to studies? A comparative analysis of six preconceptions about internet shared care. Gerontologist. 2020;60(2):340–9. https://doi.org/10.1093/geront/ questionnaires. Am Psychol. 2004;59(2):93–104. https://doi.org/10.1037/0003- gnz161 PMID: 31786594. 066X.59.2.93 PMID: 14992636. 39. Gemeinsamer Bundesausschuss Innovationsausschuss [Federal Joint Committee, Innovation Committee]: DemStepCare – Hausarztbasierte Publisher’sNote Demenzversorgung mit koordinierter Kooperation und risikostratifiziertem Springer Nature remains neutral with regard to jurisdictional claims in Einsatz spezialisierter Pflegekräfte [Dementia care from general practitioners published maps and institutional affiliations. with coordinated cooperation and risk-ratified use of specialised care]. https://innovationsfonds.g-ba.de/projekte/neue-versorgungsformen/ demstepcare-hausarztbasierte-demenzversorgung-mit-koordinierter-koopera tion-und-risikostratifiziertem-einsatz-spezialisierter-pflegekraefte.279. Accessed on 2 Dec 2020. 40. Bortz J, Schuster C. Statistik für Human- und Sozialwissenschaftler [Statistics for human and social scientists]. Heidelberg: Springer; 2010. 41. Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale: L. Erlbaum Associates; 1988. 42. Ärzteblatt: Hausärzte spielen für pflegende Angehörige eine wichtige Rolle [Family doctors play an important role for family caregivers]. https://www.a erzteblatt.de/nachrichten/97894/Hausaerzte-spielen-fuer-pflegende-A ngehoerige-eine-wichtige-Rolle. Accessed on 2 Dec 2020. 43. Wangler J, Fellgiebel A, Jansky M. Dementia diagnosis in general practitioner care – attitudes, procedures and challenges from the perspective of general practitioners in Rhineland-Palatinate. Dtsch Med Wochenschr. 2018;143(19):165–71. https://doi.org/10.1055/a-0651-1978 PMID: 30231278. 44. Bruce DG, Glenys AP, Underwood PJ, Roberts D, Steed D. Communication problems between general practitioners: effect on access to community support services. Med J Aust. 2002;177(4):186–8. https://doi.org/10.5694/j.132 6-5377.2002.tb04729.x PMID: 12175321. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Family Practice Springer Journals

Support, needs and expectations of family caregivers regarding general practitioners – results from an online survey

BMC Family Practice , Volume 22 (1) – Mar 3, 2021

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Abstract

Background: Family caregivers are often the first line of support for people requiring care; although they may personally stand to benefit, these activities substantially increase the risk of physical and emotional stress. General practitioners (GPs) may provide important support and stabilisation, but need to adjust to the needs and expectations of this group in order to do so. The aim of the study was to compare the needs of family caregivers from GPs to the support they actually experience. Additional aims included determining the main factors affecting satisfaction amongst family caregivers with support from GPs. The results were used to develop possible approaches towards optimisation within the purview of general medical practice. Methods: Between January and July 2020, 612 people supporting or caring for a family member responded to an online survey posted in seventeen internet forums focused on family caregivers. In addition to the descriptive analysis, a t-test with independent samples was used to identify significant differences between two groups. We also used binary logistic regression analysis to identify indications of potentially influential factors regarding the experienced support from GPs. Results: Around three out of every four respondents (72%) consulted GPs in care matters. The respondents gave positive responses on their GP’s knowledge of the care situation (71%), approachability in various issues connecting with care and service towards the caregiver (82%). GPs’ efforts in meeting the needs and requirements of the care recipient were also rated positively (82%). Weaknesses in support from GPs mainly involved the lack of information on advice and assistance services (55%) as well as frequently not identifying or involving caregivers as such soon enough (42%). Results from regression analysis show that the last two aspects play a major role in subjective satisfaction amongst family caregivers with support from GPs. Conclusions: We recommend that GPs undergo further training to reinforce awareness that the care triad of needs, requirements and stresses amongst family caregivers also plays a vital role in care outcomes. With this in mind, general practice staff should adopt a pre-emptive strategy towards approaching family members about potential issues and informing them about existing assistance and support services. Keywords: Family caregivers, General practitioners, Identification, Stresses, Needs, Care, Support * Correspondence: julian.wangler@unimedizin-mainz.de Centre for General and Geriatric Medicine, University Medical Centre Mainz, Am Pulverturm 13, 55131 Mainz, Germany © The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 2 of 12 Background as dementia by arranging for advisory services or en- The European Union has more than 130 million people couraging family members to use psychosocial support aged 60 or older; the proportion of very old people is services. This also helps prevent burnout amongst care- rapidly growing [1]. This involves a constantly growing givers and crises in a care situation [24]. need for care and support. Some 3.4 million people in The main challenges for the primary care setting in Germany were classified as requiring care at the end of dealing with family caregivers relate in particular to the 2017; around 5 million receive informal care and sup- early identification of caring relatives, the splitting of port according to estimates [2–4]. caregivers and those in need of care on different physi- Care is mostly administered by individual caregivers in cians, the knowledge of the individual care situation as a domestic setting; most of them provide this long-term well as information and advice activities. However, only care to persons in need without charge [2, 5]. More than a few studies have been presented on these aspects to 16% of 40 to 85-year-olds provide regular assistance to date. Various authors explain why identifying family at least one person in coping with everyday life accord- caregivers early may pose a challenge to GPs: Caring ing to the German Ageing Survey [6, 7]. The responsibil- relatives often do not see themselves as caregivers, but ity is often shared amongst family caregivers, female rather define themselves primarily in relation to the per- family members usually bearing the brunt of it [8, 9]. son being cared for (e.g. spouse, child) [9, 26, 33–35]. In Some studies have shown that the act of caregiving addition, family carers do not always talk to their own may involve a subjective sense of purpose, responsibility family doctor about their care situation, which occurs and lowered risk of mortality [10–13]. Even so, shoul- especially when the family member being cared for does dering this responsibility often entails a high level of not have the same GP as the family caregiver [8]. subjective stress with increased health risks. Family care Furthermore, GPs tend to place priority on the care re- correlates far higher to mental health issues such as high cipient so that they may lose sight of the health and psy- levels of distress and depression than it does to physical chosocial situation of the family caregiver [27, 35–37]. conditions [14–18]. Some caregivers are overwhelmed In addition, the research literature addresses the prob- with the disease-specific decisions they have to make if lem that GPs are not always sufficiently familiar with the they have not made the appropriate preparations and individual care situation of caregivers, which among preventive measures have not been taken [8, 19–24]. other things is related to time and resource problems GPs play an important role in supporting family care- [24, 26]. While various support services aimed at miti- givers [25, 26]. Due to their position in the German gating the negative effects of home care have been estab- health care system, they perform extensive primary care lished, caregivers use these services rarely [23, 24, 28]. tasks. GPs are the first point of contact for patients and Overall, there are currently no studies that allow a therefore often familiar with their patients and the pa- broader picture of the extent to which the problems tients’ family members for many years; there is a trusting mentioned occur in everyday practice in GP care. This doctor-patient relationship [5, 25, 27]. A survey of doc- study therefore takes up these challenges and examines tors in the German National Association of Statutory them from the perspective of caregivers. However, it Health Insurance Physicians (Kassenärztliche Bundesver- goes beyond that by exploring the needs, expectations einigung) concluded that 59% of family caregivers con- and experiences of family caregivers with regard to GP’s sult GPs on their care responsibilities [28]. support. Apart from diagnosis and treatment of health prob- lems, GPs are in a position to provide information, Research interest advice and (emotional) support by talking to family care- Since there is a lack of reliable studies on the type and givers as well as to gauge the situation and anticipate po- degree of support from GPs or desires and expectations tential future needs for care [2, 27–29]. In order to from family members being cared for, the aim of this ex- support GPs in dealing with family caregivers, the ploratory survey was to elucidate the need for support, German College of General Practitioners and Family specifically focusing on GP care. The research interest is Physicians (DEGAM) developed the guideline “Family concentrated in following issues: Caregivers” [30]. Recognising the needs of family caregivers in time al- The importance of support from GPs for family lows steps to be taken to ensure stabilisation and quality caregivers of life conducive to effective care. Providing information The support requirements of family caregivers with on support and assistance services (e.g. care centres, out- respect to GPs patient mental health services, dementia networks) plays a major role in this [30–33]. GPs are able to help family  The extent to which support from GPs matches the members prepare for the consequences of diseases such requirements, desires and expectations of family Wangler and Jansky BMC Family Practice (2021) 22:47 Page 3 of 12 caregivers respectively the challenges and problems regard to the GP’s support of family caregivers (e.g. family caregivers are confronted with identification of caregivers in everyday practice, address- ing specific needs of caregivers and individual care Indications of influential factors regarding the settings) were integrated into the item sets. experienced support from GPs that might have a Sociodemographic characteristics encompassed gen- moderating effect on the satisfaction of family der, age, academic qualification, occupation, and domes- caregivers with the GP’s support tic environment. Any potential to optimise support given by GPs The internal consistency was calculated for all scales used. This can be described as good especially for the Methods item sets at the center of the study: Study design The study was designed as an Internet-based survey of I think it is important that the GP... (question 14, see (informal) family caregivers. Researchers have shown Table 1); Cronbachs α = .891 that online surveys as a method for collecting data can The GP I consult in care matters... (question 15, see achieve a lot of informative value, representativeness and Table 1); Cronbachs α = .832 quality, especially with regard to specific target groups. For instance, Gosling et al. [38] compared a large Inter- net sample with a set of 510 published traditional sam- Recruitment and participants ples, showing a high degree of diversity of the Internet The survey target group included all kinds of family sample with regard to sociodemographic variables such caregivers. In order to obtain the broadest possible pic- as gender, socioeconomic status, geographic region, and ture of the reality of care in Germany, the inclusion cri- age. In addition, the authors state that Internet surveys terion was deliberately kept general. The initial question are not adversely affected by nonserious or repeat re- determines whether at least one relative, friend or neigh- sponders compared to traditional methods. bour has been regularly supported, cared for or (other- The investigation is part of a broader context, Dem- wise) looked after in the last 12 months. In this way, a StepCare, a model project for outpatient medical and wide range of different care constellations should be nursing care in dementia, itself part of a the broader included. innovation fund project supported by the German Fed- The survey was conducted online using the LimeSur- eral Joint Committee [39]. vey tool between January and July 2020 after a pretest. The anonymous survey was posted in a total of seven- Survey method teen German-language web forums involving or solely The questionnaire was based on desk research, results focused on family care. This survey design ensured from a focus group with eight GPs, and meetings with enough outreach to address caregivers often operating in family caregivers (see Multimedia Appendix 1). Develop- an informal setting. An anonymous online survey raised ing the questionnaire involved generating a catalogue of the chances of truthful responses without pressurising items relevant to practical support for family caregivers the survey target group to participate [38]. from GPs. Thirty-two clear-cut items were created to- Participants were recruited in health and care- wards developing the two key item sets (questions 14 related discussion forums online. The list of forums and 15) and then reduced to the most important state- was selected mostly using search engines such as ments according to the opinion and experience of the Google and Bing, but also by researching web direc- doctors involved. tories provided by several specialist organisations. We The two item sets were then placed one after the other used certain keywords such as caregivers, family care in the questionnaire for the respondents. They were then and carers to search for as many relevant forums as asked to state which aspects of support from GPs were possible. The selected forums were usually embedded most important to them. Further on, these items were in general information portals on the subject of care. transferred to the personal experience to elucidate the These websites are intended to support family care- extent to which the respondents’ expectations and de- givers across the board on a wide variety of questions sires were reflected in the reality of the support they re- relating to care in a domestic setting (no specific clin- ceived (see Table 1). The problems and challenges that ical pictures) and enable an exchange. were found in the course of the literature search with After that, we contacted the forum admins and asked for permission to recruit for the survey. 17 of the 29 for- The focus is on targeted support from GPs with outpatient case and ums gave their permission. A link to the online survey crisis management guided by care experts and adapted to need. Apart to invite participants was posted in a forum thread stat- from that, DemStepCare aims to raise awareness and capability in dealing with dementia amongst GPs in a comprehensive approach. ing the study purpose and procedure. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 4 of 12 Table 1 Care support needs from general practitioners compared to actual support by importance (answer categories: Very/ moderately important or completely agree/somewhat agree) It’s important to me that the general practitioner... Very The general practitioner I consult in care matters... Completely important/ agree/ Moderately Somewhat important agree (N = 612) (N = 438) ... is familiar with everyday life and challenges of caring 85% ... is familiar with everyday life and challenges of caring for 72% for family members. family members. … is familiar with my personal situation as a caregiver. 80% … is familiar with my personal situation as a caregiver. 71% … feels responsibility for the issues facing people 85% … feels responsibility for the issues facing people caring for 82% caring for family members and provides advice and family members and provides advice and assistance. assistance. … does not wait for me to raise issues with the GP 68%** … does not wait for me to raise issues but proactively 18%** but proactively addresses issues. addresses them. … provides emotional support such as 57%* … provides emotional support such as by giving 23%* encouragement during care. encouragement during care. … makes decisions with me on caring for the person 74%* … makes decisions with me on caring for the person 48%* in my care. requiring care. … sees not only the needs of the person in my care 76% … sees not only the needs of the person in my care but also 60% but also my opinions, needs and stresses. my opinions, needs and stresses. … includes the person in my care in decisions and 83% … considers the person in my care in decisions and responds 82% responds to his or her requests. to his or her requests. … encourages me to raise my own health concerns. 32% … encourages me to address my own health concerns. 23% … has enough time for me. 85%** … has enough time for me. 29%** … performs home visits to relieve me and get to 75%** … performs home visits to relieve me and get to know the 23%** know the person in my care in our home environment. person in my care in our home environment. … gives me time to consider important decisions on 59% … gives me time to consider important decisions on care. 81% care. … tells me about local support and assistance services. 85%* … tells me about local support and assistance services. 55%* … makes arrangements for support and assistance 83%** … makes arrangements for support and assistance services for 6%** services for me. me. … advises me on legal aspects such as power of 80%** … advises me on legal aspects such as power of attorney, 13%** attorney, care assistance, and driving. care assistance, and driving. … conducts regular follow-up observations. 70%* … conducts regular follow-up observations. 41%* … makes diagnoses early. 78%* … makes diagnoses early. 51%* … manages and provides medical treatment to my 52% … manages and provides medical treatment to my family 45% family member. member. … arranges doctors specialised in the field for us. 85% … arranges doctors specialised in the field for us. 95% … explains the situation to the person in my care in 85% … explains the situation to the person in my care in ways 85% ways that he or she can understand, therefore that he or she can understand, therefore supporting me. supporting me. … is early to acknowledge me as the caregiver with 85%** … is early to acknowledge me as the caregiver with the 42%** the awareness that I am responsible for caring for my awareness that I am responsible for my family member’s care family member. from the beginning. Significance: *p < .05 **p < .001 Data analysis distribution of the groups to be distinguished and the We analysed the data using SPSS 23.0 for Windows. In fact that the samples come from the same population addition to the descriptive analysis, a t-test with inde- [40]. First, the answers to the two item sets used in the pendent samples was used to identify significant differ- questionnaire were compared with a t-test (desired sup- ences between two groups. Two levels of a significance port from the GPs vs. experienced support, see Table 1). were tested for (mean difference at p < .05 and p < .001). Subsequently, a cross-tabular breakdown was used to This parametric method has a high test strength and is search for items which show highly significant differ- considered to be statistically robust. The necessary con- ences (p < .001) regarding the general satisfaction with ditions were met with the number of cases, the normal the GP’s support (see Tables 2 and 3). Wangler and Jansky BMC Family Practice (2021) 22:47 Page 5 of 12 Table 2 Contingency table broken down into satisfaction items with support from general practitioners; columns only contain completely agree or somewhere agree answer categories The general practitioner I consult in care matters... (N = 438) … sees not only the needs of … tells me about … is early to acknowledge me as the caregiver the person in my care but also local support and with the awareness that I am responsible for my my opinions, needs and stresses. assistance services. family member’s care from the beginning. How would you rate the support Very 69%** 76%** 59%** that your GP has given you in good/ caring for your family member? Mostly good Mostly 44%** 21%** 11%** not so good/ Not good at all Significance: **p < .001 We used binary logistic regression analysis at p < 0.05 grade, 7% university graduation, 17% other academic to test for potentially influential factors. Like classic lin- qualification. ear regression, binary logistic regression is a method for Occupation: 9% in full-time employment, 51% in the statistical explanation of the occurrence of values of part-time employment, 15% retired, 17% not in em- the dependent variables that are caused by the influences ployment, 8% other of one or more independent variables. The peculiarity of binary logistic regression is that it is used for the special situation in which the dependent variable is binary- Living conditions of family caregivers coded and therefore only has two characteristics. The Of the respondents, 39% provided care alone whereas aim of the study was to identify indications of how dif- 61% shared their care responsibilities with another per- ferent aspects of the experienced support from GPs son. The respective care recipient had been given a care affect the general satisfaction with the GP’s support. Ac- level (German: ‘Pflegestufe’ ) according to 49% and no cordingly, we analysed what influence the individual care level according to 39% of the respondents; 12% did items regarding personal experience (question 15) could not know. With regard to the duration of care, 22% have on satisfaction with GP’s support (question 20). stated that they had been providing care for less than a The ordinal independent variables were treated as con- year, 34% for one to 2 years, 27% three to 5 years and tinuous variables. 17% for 5 years or longer. Care recipients were usually a All sociodemographic characteristics (gender, age, aca- parent or parent-in-law (54%); followed by husband, wife demic qualification, occupation, and domestic environ- or life partner (22%); own child, foster child, godchild or ment) were also included in the analysis. child-in-law (14%); or another relative (10%). Of the re- spondents, 57% were living in the same household as the care recipient. Results With respect to the physical condition of the care re- Sample cipient, 88% indicated severe disabilities whereas 64% A total of 612 people who had been caring for at least responded with severe cognitive disabilities. Care activ- one family member, friend or neighbour on a regular ities focused on assistance and mental stimulation dur- basis in the last 12 months according to their own state- ing everyday life at 94%, household chores and ments completed the online survey; another 23 partici- assistance in household chores at 84%, assistance in per- pants took part but did not complete the survey and sonal care, nutrition and mobility at 79%, and arranging were not included in the analysis. The sample popula- for assistance and care such as filling out and submitting tion was as follows: applications and holding appointments with the author- ities or doctors at 72%. Medical and nursing activities Gender: 93% female, 7% male were carried out by 40% of the respondents. Mean age: 54 (median: 55) Academic qualification: 9% lower secondary, 25% The extent of services which the person requiring care is entitled to upper secondary, 42% high school matriculation depends on the class of nursing care. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 6 of 12 Table 3 Contingency table; column only shows completely agree and somewhat agree response categories Someone recently said: “My GP can usually help me out when I ask about care for my family member.” How far does this apply to your GP? (N = 438) How would you rate the support that your GP Very good/ Mostly 95%** has given you in caring for your family member? good Mostly not so 16%** good/ Not good at all Significance: **p < .001 Of the respondents, 69% stated that the burden on information in organising care. GPs told 61% of these re- their health in providing care was very severe or moder- spondents about supporting services at least once. Re- ately severe as opposed to 31% less severe or negligible. spondents were mostly told about care services and Of the former, 84% were providing care activities on welfare centres (56%), day centres or short-term care their own compared to 59% of those sharing the care ac- (34%) and assistance for everyday situations (31%). tivities (p < .001). Regarding emotional burden, 58% assessed their own stress from providing care as very se- Satisfaction with support from general practitioners vere or moderately severe. In total, 68% of the respondents who consulted a GP in care matters felt very well or moderately well supported Importance of the general practitioners and support compared to 32% who did not feel well supported or needs supported at all. 70% of the respondents state that the GPs play a very or moderately important role as contact GP can usually be of great help when it comes to a ques- persons for matters of care according to 67% of the re- tion about care. spondents as opposed to 33% for whom GPs played little Following the comparison of desired support from the or no role. Correspondingly, 72% stated that they con- GPs and experienced support (see Table 1), a cross- sulted their own or someone else’s GP in care matters; tabular breakdown was used to search for items which 39% stated that they would often consult their GP, 15% show highly significant differences (p < .001) regarding occasionally, and 18% somewhat seldom. the general satisfaction with the GP’s support (see Ta- In line with the research interest, the respondents first bles 2 and 3). received an item set in which they could state which as- Family caregivers who were moderately or very unsat- pects of support from the GP were most important to isfied with the support they were given by GPs com- them. Further on, these items were transferred to the plained of the lack of three striking support aspects personal experience to reveal the extent to which the re- compared to those that were satisfied (see Table 2). spondents’ expectations and desires were reflected in the These comprised directly addressing and properly con- reality of the support they received. Here, only those sidering family caregivers on the one hand, and informa- caregivers who had consulted their doctor with regard to tion on assistance and support services on the other. care were surveyed (N = 438). A further breakdown confirms this finding. Respon- As shown in Table 1, support from GPs for family dents found the willingness and ability of GPs to pro- caregivers was received favourably in terms of psycho- vide assistance in organising care crucial to general social support. These results reflect the GP’s approach satisfaction with the support they received from GPs as contact person familiar with the caregiver’s situation (see Table 3). while dedicating a great deal of attention to the person in need of care. Factors affecting satisfaction with support from general However, there were also weaknesses. For example, practitioners the desires of family caregivers for a proactive role from The results from binary logistic regression analysis reveal GPs in recognising and anticipating care issues were not a number of stronger and weaker factors for subjective always fulfilled. Family caregivers also expressed a desire satisfaction amongst family caregivers with their GPs for a strong advisory role of the GP in arranging the (see Table 4). For example, the respondents appreciated conditions for care as well as legal aspects and informa- it when GPs knew about their situation in general and at tion on assistance and support services. personal level (Items 1, 2) as well as signalled responsi- Referring to those respondents that consulted a GP in bility with regard to the role they had taken (Item 3). care matters, 75% saw this as moderately or very import- Consideration of individual needs and desires of care re- ant with respect to providing a source for advice and cipients also represented an important predictor (Item Wangler and Jansky BMC Family Practice (2021) 22:47 Page 7 of 12 Table 4 Binary logistic regression, influential factors identified (N = 438) Dependent variable: Satisfaction with support from general practitioners (“How would you rate the support that your GP has given you in caring for your family member?”) Independent variable Omnibus Log- Cox Nagelkerke Hosmer- Coefficient Exp Significance 95% Standard (possible influential test (Step Likelihood & R Lemeshow of (B) confidence error factor or predictor) 1: Model) Snell Chi regression interval The general R β Exp (B) practitioner I consult in care matters... 1) … is familiar with .000 403.368 .286 .400 .000 2.889 17.972 .000 10.709; .264 everyday life and 30.162 challenges of caring for family members. 2) … is familiar with my .000 431.158 .239 .335 .000 2.522 12.448 .000 7.654; .248 personal situation as a 20.246 caregiver. 3) … feels responsibility .000 413.533 .269 .376 .000 3.455 31.659 .000 15.090; .378 for the issues facing 66.422 people caring for family members and provides advice and assistance. 4) … does not wait for .037 546.806 .010 .014 .000 .585 1.795 .044 1.017; 3.169 .290 me to raise issues but proactively addresses them. 5) … provides .000 510.691 .088 .123 .000 1.989 7.309 .000 3.436; .385 emotional support such 15.548 as by giving encouragement during care. 6) … makes decisions .004 542.802 .019 .026 .000 .598 1.818 .004 1.208; 2.736 .209 with me on caring for the person in need of it. 7) … sees not only the .000 531.878 .043 .060 .000 .916 2.498 .000 1.656; 3.769 .210 needs of the person in my care, but also my opinions, needs and stresses. 8) … considers the .000 433.072 .236 .330 .000 3.072 21.579 .000 11.093; .340 person in my care in 41.978 decisions and responds to his or her requests. 9) ... encourages me to .000 486.108 .138 .193 .000 3.085 21.861 .000 6.790; .597 raise my own health 70.391 concerns. 10) … has enough time .058 547.502 .008 .012 .000 .442 1.555 .059 .983; 2.462 .234 for me. 11) … conducts home .000 486.108 .138 .193 .000 3.085 21.861 .000 6.790; .597 visits to relieve me and 70.391 to make an impression of the person in my care in our home environment. 12) … gives me time to .122 548.787 .005 .008 .000 .392 1.480 .119 .904; 2.422 .251 consider important decisions on care. 13) … tells me about .000 441.421 .221 .309 .000 2.311 10.087 .000 6.299; .240 local support and 16.153 assistance services. 14) … makes .016 545.380 .013 .018 .000 1.299 3.667 .037 1.079; .624 arrangements for 12.463 support and assistance services for me. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 8 of 12 Table 4 Binary logistic regression, influential factors identified (N = 438) (Continued) Dependent variable: Satisfaction with support from general practitioners (“How would you rate the support that your GP has given you in caring for your family member?”) Independent variable Omnibus Log- Cox Nagelkerke Hosmer- Coefficient Exp Significance 95% Standard (possible influential test (Step Likelihood & R Lemeshow of (B) confidence error factor or predictor) 1: Model) Snell Chi regression interval The general R β Exp (B) practitioner I consult in care matters... 15) … advises me on .000 522.476 .063 .088 .000 2.343 10.412 .000 3.197; .602 legal aspects such as 33.906 power of attorney, care assistance, and driving. 16) … conducts regular .028 546.346 .011 .015 .000 .464 1.590 .030 1.047; 2.416 .213 follow-up observations. 17) … makes diagnoses .079 548.086 .007 .010 .000 .360 1.433 .080 .958; 2.143 .205 early. 18) … supports and .000 527.205 .053 .074 .000 1.040 2.828 .000 1.842; 4.342 .219 provides therapy for my family member. 19) … arranges doctors .000 517.243 .074 .104 .000 2.845 17.208 .000 5.039; .627 specialised in the field 58.767 for us. 20) … explains the .000 467.789 .173 .242 .000 2.694 14.793 .000 7.570; .342 situation to the person 28.908 in my care in ways that he or she can understand, therefore supporting me. 21) … is early to .000 452.523 .201 .281 .000 2.422 11.270 .000 6.378; .290 acknowledge me as the 19.916 caregiver with the awareness that I am responsible for my family member’s care from the beginning. Coding of dependent variables: 0 = Completely agree/Somewhat agree; 1 = Somewhat disagree/Completely disagree a 2 2 Classification according to Cohen [41]: low or weak explained variation | Nagelkerke R | = <.1; medium or moderate explained variation | Nagelkerke R | = .13–.3; high or strong explained variation | Nagelkerke R | = >.35 8), together with ability to support the caregiver with ex- stating that they did so frequently. This confirms pre- planations and ideally mediation between the caregiver vious studies that emphasised the role of support and care recipient (Item 20). Information on local advice from GPsinthistarget group [4, 9, 28]. From the and assistance services played a major role in the satis- point of view of family caregivers the importance of faction felt by the respondents (Item 13). GPs identifying the GP has further increased in recent years [28]. and addressing the caregiver as such early on also The results show that it is particularly important to counted as an influential factor (Item 21). the respondents that GPs feel responsible for the situ- No significant differences were found with regard to ation of caring relatives, that they can empathise with the sociodemographic variables surveyed. Accordingly, them and that they are able to see the individual care no sociodemographic variables could be identified as in- situation. Accordingly, early identification of caregivers fluential factors. by the doctor is desired. Joint decision-making and tar- geted referral to support services and specialists are also Discussion important to the respondents. From the point of view of Principal findings and comparison with prior work a majority of those surveyed, GPs are key players in pro- The results from the survey showed first of all that viding information on care. As a result, by coming to the GPs act as central contact persons in whom family assistance of family caregivers, GPs play a major role in caregivers place high levels of ability and trustworthi- successful outcomes of family care and long-term stabil- ness. A good three out of every four respondents isation of family caregivers [5, 26]. In an expert report, (72%) consulted a GP in care matters, with 54% the National Association of Statutory Health Insurance Wangler and Jansky BMC Family Practice (2021) 22:47 Page 9 of 12 Physicians (Kassenärztliche Bundesvereinigung) points affected by home care. However, this kind of cooper- out that caring relatives need ‘natural’ contact in the ation would seem beneficial and urgent. Family members health care system who, in addition to caring for those need arrangements for practical everyday assistance, fi- in need of care, also keeps an eye on the physical health nancing opportunities, legal advice, coping strategies and and emotional concerns of those giving help [28, 42]. relief in cases of overburden and health deterioration. Due to their position in the German health system, GPs Arranging assistance networks for patients and family are particularly well suited for this. Other studies show members may substantially reduce the danger of burn- that family caregivers attach great importance to family out amongst caregivers [31]. However, this would de- doctors because they want a permanent, trustworthy pend on reinforcing interdisciplinary communications contact who can take on advisory and coordinating tasks between health sectors as well as setting up formal and [24]. From the point of view of the family caregivers, fa- informal cooperation networks [45, 46] while giving GPs miliarity of GPs with personal care situations, approach- a solid knowledge basis on local advice sources to ensure ability in a variety of issues and directly addressing care fast, unbureaucratic referrals. recipients proved especially important. The results of the present study show that family care- However, the results show that GPs do not always givers are particularly satisfied when GPs consistently completely match the requirements. For example, GPs refer to offers of help and advice. This corresponds to did not always show the same level of consideration for widespread demands for putting GPs into the role of the needs – health and otherwise – of the family care- health mediators, who specifically promote health, refer givers as they did for their patients as care recipients. patients to suitable offers of help and, thus, contribute Research literature has addressed a tendency to focus on more to prevention [47]. This also applies to the support care recipients while reducing family caregivers to their and (preventive) stabilisation of family caregivers. Mean- functional role and marginalising the psychosocial effects while, care concepts have been developed to structurally of providing care [27, 35–37]. Another problem is that strengthen the GP setting as a contact for this target general practice staff do not always identify family care- group. For example, a KBV concept aims to prevent or givers early on for them to be able to involve family minimise the health risks and limitations for caregivers caregivers in this role. In this context, one of the difficul- [48]. The concept starts with the central key function of ties is that general practice staff members are often not general practice and is intended to enable early individ- sufficiently trained in specific tasks such as identifying ual support through a targeted situation analysis and ad- and supporting family caregivers [43]. Apart from that, vice. The care concept intends to determine the the results of the present study state that only some GPs individual care-related health risk of the caregiver and, support family caregivers with information on advice on this basis, to offer further advice on physical and psy- and assistance services. This generally corresponds with chosocial issues. However, this requires local (health) the finding that GPs often show insufficient general networks as well as support and (psychosocial) counsel- awareness of external forms of assistance for family care- ling actors with whom GPs actively cooperate [24]. A givers [24, 31] and are not involved in local health net- systematic review by Plöthner et al. points out the im- works [44]. portance of strengthening outpatient care structures The regression analysis has shown that the knowledge [49]. The researchers draw the conclusion that establish- of the personal care situation and the ability to mediate ing an outpatient care system, which supports families between the needs of caregiver and care recipient is im- and friends in providing (elderly) care, while meeting the portant as an influencing factor for subjective satisfac- needs and wishes of informal caregivers, is of high tion among family caregivers with their GPs. Especially relevance. the advisory activities with regard to Information on Apart from that, there is some discussion on the intro- local advice and assistance services are of great duction of case and support managers to assist GPs in relevance. supporting family care situations [50]. One of the bene- Particularly in this context, there is a need for fits may be an improvement in analysis and control of optimization from the perspective of caregivers. Improv- the treatment situation for the care recipient as well as ing and integrating GPs into other bodies and organisa- early stabilisation and advice for family caregivers. tions giving advice and support such as care centres, outpatient mental health services and dementia networks Optimisation approaches would provide essential leverage to the effectiveness of Early involvement of family caregivers is essential to- support given by GPs to family caregivers, who have re- wards good care and promotes satisfaction and mutual ceived little attention from studies up to now. Advice trust and confidence [51]. Therefore, further training services are especially scarce in rural areas, reducing the would help GPs to be more aware that addressing the number of opportunities that GPs have to refer people needs of family caregivers is crucial to the long-term Wangler and Jansky BMC Family Practice (2021) 22:47 Page 10 of 12 success of care in a domestic setting [36, 37, 52, 53]. background. So it is likely that they were not recruited Practice staff could undergo specific training pro- in adequate numbers. Studies have shown that caregivers grammes as well in order to help identify and support with a migration background generally have only limited (informal) caregivers. Home visits may help understand access to sources of advice and information as well as care issues more effectively. medical support, so that this group is presumably under- Stabilisation strategies in consultations with patients represented in the present study [55]. and family members should not be underestimated as For the mentioned subgroups of family caregivers it important skills [31]. GPs could contribute to orienta- can be assumed that the online survey systematically tion and calming and otherwise boost resilience in con- leads to underrepresentation. Accordingly, it may be sultations with patients and family members. assumed that recruiting family caregivers from other Thorough and early information on local assistance settings – such as waiting rooms in general practices – and support services would allow family caregivers ac- may lead to more generalisable results on family care- cess to information on organising care in good time givers as a whole. Such studies are warranted especially [10, 53]. Giving family members the corresponding with regard to optimising general medical practice with support may improve outpatient care so as to allow regard to the needs of family caregivers. people requiring care to stay within their home set- ting longer [24, 54]. Conclusions Family caregivers play a vital role, as caring for infirm Limitations and directions for future research people reliant on care in a domestic setting would not Due to its general focus, the study should include family be possible without them. GPs are essential in support- caregivers from as many areas as possible and, thus, ing them, especially when providing information on allow the broadest possible picture regarding the ques- planning and organising care as well as advice in other tion of GP support. In the course of the study it was fields alongside psychosocial support. possible to recruit a sociodemographically heteroge- The results show that family caregivers place GPs in a neous sample of caregivers, in which, among other special role of supporting. From respondents’ past ex- things, different care constellations, age groups and edu- perience, GPs live up to their responsibility in different cational backgrounds are represented (see description of ways. Even so, there are also indications that general the sample). However, the study is unable to produce a practices have not always been successful in satisfying all representative body of opinion due to the limited num- the needs of family caregivers. ber of cases and the self selection of respondents partici- We recommend that GPs undergo further training to pating in the survey. In addition, the fact that an online reinforce awareness that the care triad of needs, require- survey was carried out also influences the question of ments and stresses amongst family caregivers also plays representativeness. In the case of the present work, the a vital role in care outcomes. With this in mind, general recruitment of family caregivers via GPs would have practice staff should adopt a pre-emptive strategy to- meant a considerably greater expenditure of time and re- wards approaching family members about potential is- sources. So an online survey of family caregivers was an sues and informing them about existing assistance and easy-to-implement solution in which a high number of support services. cases and a heterogeneous respondent group could be recruited. Supplementary Information A comparison with other studies and official statistics The online version contains supplementary material available at https://doi. shows that the sample does not reflect the actual distri- org/10.1186/s12875-021-01381-4. bution of sociodemographic characteristics among car- ing relatives [30]. For example, the spouses or life Additional file 1. Questionnaire (translation). partners are less represented in the sample, while the group of other relatives is proportionally more repre- Abbreviation sented. It can also be assumed that certain sub-groups GP(s): General Practitioner(s) within the group of family caregivers are more difficult to reach via an online survey. In this context, it should Acknowledgements be noted that older people (70 years and older) are rela- Not applicable. tively unwilling to take part in online activity, resulting in a relatively low proportion of older family caregivers Authors’ contributions The authors alone are responsible for the content and the writing of the in the sample population [38]. Since the survey was ex- paper. JW prepared, coordinated and implemented the project. Both JW and clusively placed in German-language web forums, there MJ contributed to the project design, analysis of transcripts and drafting of was a language barrier for people with a migration the manuscript. Both authors read and approved the final manuscript. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 11 of 12 Funding 9. DAK. DAK-Pflege-Report 2015 [DAK care report 2015]. Hamburg: DAK- This research was not funded. Gesundheit; 2015. 10. Wuttke-Linnemann A, Henrici CB, Müller N, Lieb K, Fellgiebel A. Bouncing back from the burden of dementia: predictors of resilience from the Availability of data and materials perspective of the patient, the spousal caregiver, and the dyad — an All data generated or analysed during this study are included in this exploratory study. GeroPsych. 2020;33(3):170–81. https://doi.org/10.1024/1 published article. 662-9647/a000238. 11. Bestmann B, Wüstholz E, Verheyen F. Belastung und sozialer Zusammenhalt. Ethics approval and consent to participate Eine Befragung zur Situation von pflegenden Angehörigen. WINEGWissen All methods were carried out in accordance with relevant guidelines and 04. Hamburg: Techniker Krankenkasse; 2014. regulations. 12. Döhner H, Kofahl C, Lüdecke D, et al. Services for supporting family carers During this study, no sensitive patient data was gathered or clinical tests of older dependent people in Europe: characteristics, coverage and usage. performed. This is a strictly anonymised survey of a total of 612 informal Hamburg: University Medical Centre of Hamburg Eppendorf; 2007. caregivers. The Ethics Commission of the State of Rhineland-Palatinate, 13. O’Reilly D, Connolly S, Rosato M, Patterson C. Is caring associated with an Germany, informed us that approval by an ethics committee was not increased risk of mortality? A longitudinal study. Soc Sci Med. 2008;67(8): necessary. 1282–90. https://doi.org/10.1016/j.socscimed.2008.06.025 PMID: 18667262. Written informed consent for participation was obtained from all participants 14. Dias R, Santos RL, Sousa MF, et al. Resilience of caregivers of people with before the start of the study. Before the actual survey started, the dementia: a systematic review of biological and psychosocial determinants. respondents received information about the aim and purpose of the study Trends Psychiatry Psychother. 2015;37(1):12–9. https://doi.org/10.1590/2237- on the first page of the online questionnaire and were informed that it was 6089-2014-0032 PMID: 25860562. an anonymous survey in accordance with the existing data protection 15. Pinquart M, Sörensen S. Differences between caregivers and noncaregivers standards. Furthermore, it was made clear that the data will only be used for in psychological health and physical health: a meta-analysis. Psychol Aging. scientific purposes. Acknowledgment and consent to the conditions of the 2003;18(2):250–67. https://doi.org/10.1037/0882-7974.18.2.250 PMID: survey was given; only then was it possible to begin the survey. 16. Joling K, Windle G, Dröes R-M, et al. Factors of resilience in informal Consent for publication caregivers of people with dementia from integrative international data Not applicable. analysis. Dement Geriatr Cogn Disord. 2016;42(3–4):198–214. https://doi. org/10.1159/000449131 PMID: 27669054. 17. Roepke SK, Mausbach BT, Patterson TL, et al. Effects of Alzheimer caregiving Competing interests on allostatic load. J Health Psychol. 2011;16(1):58–69. https://doi.org/10.11 The authors declare that they have no competing interests. 77/1359105310369188 PMID: 20709885. Received: 19 October 2020 Accepted: 28 January 2021 18. Linnemann A, Hilsenbek MM, Lelieveld I, Geschke K, Wolf D, Fellgiebel A. Comparison of psychosocial and medical characteristics of patients with dementia and their primary informal caregivers between inpatient and day clinic treatment. Dementia. 2020;19(3):606–17. https://doi.org/10.1177/14713 References 01218781130 PMID: 29886778. 1. WHO Regional Office for Europe. Home Care in Europe. Copenhagen: WHO/ 19. Schulz R, Beach SR. Caregiving as a riks factor for mortality. The Caregiver Europe; 2015. Health Effects Study. JAMA. 1999;282(23):2215–9. https://doi.org/10.1001/ja 2. Geyer J, Schulz E. Who cares? Die Bedeutung der informellen Pflege durch ma.282.23.2215 PMID: 10605972. Erwerbstätige in Deutschland [Who cares? The importance of informal care 20. Beach SR, Schulz R, Williamson GM, Miller LS, Weiner MF, Lance CE. Risk given by working people in Germany]. DIW-Wochenbericht. 2014;81:294– factors for potentially harmful informal caregiver behavior. J Am Geriatr Soc. 2005;53(2):255–61. https://doi.org/10.1111/j.1532-5415.2005.53111.x PMID: 3. Nowossadeck S, Engstler H, Klaus D. Pflege und Unterstützung durch Angehörige [Care and support by family members]. Report Altersdaten 1/ 21. Cherry MG, Salmon P, Dickson JM, Powell D, Sikdar S, Ablett J. Factors 2016. Berlin: Deutsches Zentrum für Altersfragen [German Centre of influencing the resilience of carers of individuals with dementia. Rev Clin Gerontology]; 2016. Gerontol. 2013;23(4):251–66. https://doi.org/10.1017/S0959259813000130. 4. Schneekloth U, Wahl HW, editors. Möglichkeiten und Grenzen selbstständiger 22. Schulz R, Sherwood P. Physical and mental health effects of family Lebensführung in privaten Haushalten [Opportunities and limitations to caregiving. Am J Nurs. 2008;108(9 Suppl):23–7. https://doi.org/10.1097/01.NA independent living in private households], Abschlussbericht im Auftrag des J.0000336406.45248.4c PMID: 18797217. Bundesministeriums für Familie, Senioren, Frauen und Jugend [final report 23. Romero-Moreno R, Márquez-González M, Mausbach BT, Losada A. Variables commissioned by the Federal Ministry for Family Affairs, Senior Citizens, modulating depression in dementia caregivers: a longitudinal study. Int Women and Youth]. Munich; 2005. Psychogeriatr. 2012;24(8):1316–24. https://doi.org/10.1017/S1041610211 5. Connell CM, Boise L, Stuckey JC, et al. Attitudes toward the diagnosis and 002237 PMID: 22176670. disclosure of dementia among family caregivers and primary care 24. Geschke K, Scheurich A, Schermuly I, Laux N, Böttcher A, Fellgiebel A. physicians. Gerontologist. 2004;44(4):500–7. https://doi.org/10.1093/ Effectivity of early psychosocial counselling for family caregivers in general geront/44.4.500 PMID: 15331807. practitioner based dementia care. Dtsch Med Wochenschr. 2012;137(43): 6. Klaus D, Engstler H. Daten und Methoden des Deutschen Alterssurveys 2201–6. https://doi.org/10.1055/s-0032-1305320 PMID: 23076666. [Data and methods used in the German Ageing Survey]. In: Mahne K, Wolff 25. Brown CJ, Mutran EJ, Sloane PD, Long KM. Primary care physicians’ J, Simonson J, et al., editors. Altern im Wandel: Zwei Jahrzehnte Deutscher knowledge and behavior related to Alzheimer's disease. J Appl Gerontol. Alterssurvey [Ageing in transition: The German Ageing Survey two decades 1998;17(4):462–79. https://doi.org/10.1177/073346489801700404. on]. Wiesbaden: Springer VS; 2016. p. 25–42. 26. Greenwood N, Mackenzie A, Habibi R, Atkins C, Jones R. General 7. Klaus D, Tesch-Römer C. Pflege und Unterstützung bei gesundheitlichen practitioners and carers: a questionnaire survey of attitudes, awareness of Einschränkungen: Welchen Beitrag leisten Personen in der zweiten issues, barriers and enablers to provision of services. BMC Fam Pract. 2010; Lebenshälfte für andere? [Care and support in health disabilities: What 11:100. https://doi.org/10.1186/1471-2296-11-100 PMID: 21172001. contribution do people in the second half of life give to others?]. In: Mahne 27. Bulsara CE, Fynn N. An exploratory study of gp awareness of carer K, Wolff J, Simonson J, et al., editors. Altern im Wandel: Zwei Jahrzehnte emotional needs in Western Australia. BMC Fam Pract. 2006;7:33. https://doi. Deutscher Alterssurvey [Ageing in transition: The German Ageing Survey two org/10.1186/1471-2296-7-33 PMID: 16719930. decades on]. Wiesbaden: Springer VS; 2016. p. 185–200. 8. Schmidt M, Schneekloth U. Abschlussbericht zur Studie ‚Wirkungen des Pflege- 28. Kassenärztliche Bundesvereinigung [National Association of Statutory Health Weiterentwicklungsgesetzes’ [Final report from the study on the effects of the Insurance Physicians]. Versichertenbefragung 2018. Ergebnisse einer law concerning further development of care]. Berlin: Bundesministerium für repräsentativen Bevölkerungsumfrage [Results from a representative survey]. Gesundheit [Federal Ministry of Health]; 2011. Berlin; 2018. Wangler and Jansky BMC Family Practice (2021) 22:47 Page 12 of 12 29. Lamura G, Mnich E, Wojszel B, et al. Erfahrungen von pflegenden 45. Prüfer F, Joos S, Milksch A. Die Rolle des Hausarztes in der kommunalen Angehörigen älterer Menschen in Europa bei der Inanspruchnahme von Gesundheitsförderung [The role of general practitioners in local health Unterstützungsleistungen. Ergebnisse des Projektes EUROFAMCARE promotion]. Prävention und Gesundheitsförderung. 2015;10(2):180–5. [Experiences of family members caring for older people using support https://doi.org/10.1007/s11553-015-0486-1. services in Europe. Results from the EUROFAMCARE project]. Z Gerontol 46. Kuske S, Graf R, Hartig M, Quasdorf T, Vollmar HC, Bartholomeyczik S. Geriat. 2006;39(6):429–42. https://doi.org/10.1007/s00391-006-0416-0. Dementia considered? Safety-relevant communication between health care 30. Deutsche Gesellschaft für Allgemeinmedizin und Familienmedizin [German settings: a systematic review. J Public Health. 2014;22(5):383–93. https://doi. College of General Practitioners and Family Physicians]: S3-Leitlinie org/10.1007/s10389-014-0630-y. ‘Pflegende Angehörige von Erwachsenen’ [S3-guideline for German General 47. Curbach J, Apfelbacher C, Knoll A, Herrmann S, Szagun B, Loss J, et al. Practice ‘Family Caregivers’]. https://www.degam.de/files/Inhalte/Leitlinien- J Evid Qual Health Care. 2018;131(2):66–72. https://doi.org/10.1016/j. Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-006_Pflegende%20A zefq.2018.02.001. ngehoerige/053-006l_DEGAM%20LL%20Pflegende%20Angeho%CC% 48. Kassenärztliche Bundesvereinigung [National Association of Statutory Health 88rige_4-3-2019.pdf. Accessed on 2 Dec 2020. Insurance Physicians]: Pflegende Angehörige: Ein Versorgungsprogramm [Caregivers: A care program]. https://kbv.de/media/sp/Eckpunkte_ 31. Laux N, Melchinger H, Scheurich A, et al. Improving general practitioners Pflegende_Angeh_rige.pdf. Accessed on 2 Dec 2020. guided dementia care. Dtsch Med Wochenschr. 2010;135(44):2175–80. 49. Plöthner M, Schmidt K, de Long L, Zeidler J, Damm K. Needs and https://doi.org/10.1055/s-0030-1267494. preferences of informal caregivers regarding outpatient care for the elderly: 32. Linden M, Horgas AL, Gilberg R, Steinhagen-Thiessen E. Predicting health a systematic literature review. BMC Geriatr. 2019;19(1):82. https://doi.org/1 care utilization in the very old: the role of physical health, mental health, 0.1186/s12877-019-1068-4 PMID: 30866827. attitudinal and social factors. J Aging Health. 1997;9(1):3–27. https://doi. 50. Reilly S, Miranda-Castillo C, Malouf R, et al. Case management approaches org/10.1177/089826439700900101 PMID: 10182408. to home support for people with dementia. Cochrane Database Syst Rev. 33. Löppönen M, Raiha I, Isoaho R, Vahlberg T, Kivelä S-L. Diagnosing cognitive 2015;1(1):CD008345. https://doi.org/10.1002/14651858.CD008345.pub2 PMID: impairment and dementia in primary health care – a more active approach is needed. Age Ageing. 2003;32(6):606–12. https://doi.org/10.1093/ageing/a 51. The Princess Royal Trust for Carers and Royal College of General fg097 PMID: 14600001. Practitioners. Supporting carers: an action guide for general practitioners 34. Höppner C, Schneemilch M, Lichte T. Pflegende Angehörige und ihre and their teams. London: RCGP; 2011. Belastungen in Hausarztpraxen identifizieren – Hindernisse und 52. Vollmar HC, Gräßel E, Lauterberg J, et al. Multimodale Schulung von Empfehlungen [Identifying Informal Carers and Their Burden in Family Hausärzten – Evaluation und Wissenszuwachs im Rahmen der Initiative Practices – Barriers and Recommendations]. Z Allg Med. 2015;91(7/8):310–4. Demenzversorgung in der Allgemeinmedizin (IDA) [Multimodal training for https://doi.org/10.3238/zfa.2015.0310%20130314. general practitioners – evaluation and development of knowledge in the 35. Carduff E, Finuance A, Kendall M, et al. Understanding the barriers to IDA initiative for dementia care in general practice]. J Evid Qual Health Care. identifying carers of people with advanced illness in primary care: 2007;101(1):27–34. https://doi.org/10.1016/j.zgesun.2006.12.005. triangulating three data sources. BMC Fam Pract. 2014;15:48. https://doi. 53. Donath C, Gräßel E, Großfeld-Schmitz M, et al. Effects of general practitioner org/10.1186/1471-2296-15-48. training and family support services on the care of home-dwelling 36. Burridge LH, Mitchell GK, Jiwa M, Girgis A. Consultation etiquette in general dementia patients - results of a controlled cluster-randomized study. BMC practice: a qualitative study of what makes it different for lay cancer Health Serv Res. 2010;10:314. https://doi.org/10.1186/1472-6963-10-314 caregivers. BMC Fam Pract. 2011;12:110. https://doi.org/10.1186/1471-22 PMID: 21087474. 96-12-110 PMID: 21970440. 54. Thyrian JR, Fiss T, Dreier A, et al. Life- and person-centred help in 37. Greenwood N, Mackenzie A, Harris R, Fenton W, Cloud G. Perception of the Mecklenburg-Western Pomerania, Germany (DelpHi): study protocol for a role of general practice and practical support measures for carers of stroke randomised controlled trial. Trials. 2012;13:56. https://doi.org/10.1186/1745- survivors: a qualitative study. BMC Fam Pract. 2011;12:57. https://doi.org/1 6215-13-56 PMID: 22575023. 0.1186/1471-2296-12-57 PMID: 21699722. 55. Ahmad M, van den Broeke J, Saharso S, Tonkens E. Persons with a migration 38. Gosling SD, Vazire S, Srivastava S, John OP. Should we trust web-based background caring for a family member with dementia: challenges to studies? A comparative analysis of six preconceptions about internet shared care. Gerontologist. 2020;60(2):340–9. https://doi.org/10.1093/geront/ questionnaires. Am Psychol. 2004;59(2):93–104. https://doi.org/10.1037/0003- gnz161 PMID: 31786594. 066X.59.2.93 PMID: 14992636. 39. Gemeinsamer Bundesausschuss Innovationsausschuss [Federal Joint Committee, Innovation Committee]: DemStepCare – Hausarztbasierte Publisher’sNote Demenzversorgung mit koordinierter Kooperation und risikostratifiziertem Springer Nature remains neutral with regard to jurisdictional claims in Einsatz spezialisierter Pflegekräfte [Dementia care from general practitioners published maps and institutional affiliations. with coordinated cooperation and risk-ratified use of specialised care]. https://innovationsfonds.g-ba.de/projekte/neue-versorgungsformen/ demstepcare-hausarztbasierte-demenzversorgung-mit-koordinierter-koopera tion-und-risikostratifiziertem-einsatz-spezialisierter-pflegekraefte.279. Accessed on 2 Dec 2020. 40. Bortz J, Schuster C. Statistik für Human- und Sozialwissenschaftler [Statistics for human and social scientists]. Heidelberg: Springer; 2010. 41. Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale: L. Erlbaum Associates; 1988. 42. Ärzteblatt: Hausärzte spielen für pflegende Angehörige eine wichtige Rolle [Family doctors play an important role for family caregivers]. https://www.a erzteblatt.de/nachrichten/97894/Hausaerzte-spielen-fuer-pflegende-A ngehoerige-eine-wichtige-Rolle. Accessed on 2 Dec 2020. 43. Wangler J, Fellgiebel A, Jansky M. Dementia diagnosis in general practitioner care – attitudes, procedures and challenges from the perspective of general practitioners in Rhineland-Palatinate. Dtsch Med Wochenschr. 2018;143(19):165–71. https://doi.org/10.1055/a-0651-1978 PMID: 30231278. 44. Bruce DG, Glenys AP, Underwood PJ, Roberts D, Steed D. Communication problems between general practitioners: effect on access to community support services. Med J Aust. 2002;177(4):186–8. https://doi.org/10.5694/j.132 6-5377.2002.tb04729.x PMID: 12175321.

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