Bettina Schwind1†
Rosa Visscher1,2†
Jörg Haslbeck1
Thomas Falkenstein3
Christina Riewoldt4,5
Lennert Griese6
Birgit Behrisch7
Sabine Metzing4
Martin Nagl-Cupal3*- 1Careum School of Health, Kalaidos University of Applied Sciences, Zurich, Switzerland
- 2Department of Medicine, Chair of Public Health and Health Services Research, Institute for Medical Information Processing, Biometry, and Epidemiology, LMU Munich, Munich, Germany
- 3Department of Nursing Science, Faculty of Social Sciences, University of Vienna, Vienna, Austria
- 4School of Nursing Sciences, Witten/Herdecke University, Witten, Germany
- 5Fliedner Fachhochschule, University of Applied Sciences, Düsseldorf, Germany
- 6School of Public Health, Bielefeld University, Bielefeld, Germany
- 7Catholic University of Applied Social Sciences, Berlin, Germany
The rising burden of chronic illness, driven by increased life expectancy and an aging population, has amplified the demand for family caregiving and research thereof to assure the well-being of families in the future. Addressing these challenges requires an evaluation of the existing gaps in research on family caregiving and well-being in adult chronic illness. In order to achieve this, seven scholars from various academic disciplines who are researching this topic in Austria, Germany, and Switzerland convened for a two-day workshop in 2024. Discussions were complemented by a set of initial literature searches. The workshop revealed that studies documenting the burdens of informal caregiving have tended to overlook the broader family and social contexts, as well as the well-being of families as a whole, by focusing on single perspectives and improvement of disease management. Thereby, current research fails to address the diverse needs of all family members involved and often neglects intertwined factors like gender, socioeconomic status, and access to the formal health and care system. This results in gaps in how these intertwined factors influence family caregiving and well-being. We propose a more comprehensive, interdisciplinary investigation of family caregiving and well-being in future studies. Further scientific consideration is needed to adequately address the structural and procedural barriers to (in)formal support for families. Understanding the real-life complexities of caregiving can contribute to bridging gaps in research and practice, while promoting family-centered approaches to contribute to health equity. Research and practice recommendations are provided.
1 Introduction
The burden of chronic diseases, defined as health conditions that persist and necessitate continuous management over an extended period (1), is increasing in Europe due to improved life expectancy and demographic changes toward an aging population (2, 3). Family members provide substantial support to chronic ill adults, understood as informal care that is characterized by a lack of formal training or financial compensation (4). This informal care provided by families is an important cornerstone of health care (5, 6). Due to the predicted shoratage of health professionals, there will be an even greater need for family members to five care in the future (5, 7–10). However, families are constantly under change. For example, family members are more geographically dispersed which leads to shifts in the set-up of households and what it means to be a family (11, 12). This highlights that what constitutes a family is bound to social change (12), but affecting who is considered to need (formal) support and thus a matter of (intergenerational) health and equity concerns (13, 14). As family caregiving of chronically ill individuals is of critical importance to the functioning of our communities and societies (15, 16), it is of the utmost importance to better understand the complex issues at stake to be best prepared for the challenges ahead.
In light of the complex interplay between adult chronic illness, family caregiving and wellbeing, it is imperative to undertake a comprehensive evaluation of the existing research gaps from an interdisciplinary perspective. This is warranted by the recognition that diverse academic disciplines may approach this subject from various perspectives (17), thereby encouraging innovation, creativity, productivity and overall research success (17, 18). To achieve this, a two-day workshop on “Chronic illness and family over time”, funded by the Swiss National Science Foundation (222885), was held in February 2024 in Zurich, Switzerland. (see the agenda in Supplementary material S1). The workshop included seven scholars (see authors) from diverse academic backgrounds, including public health, nursing, education, disability studies, sports, social sciences, and gender studies to enhance reflexive problem understanding. The scholars came from research institutions in Austria, Germany, and Switzerland and were of different genders, ages and research seniority to ensure a diversity in perspectives. In preparation for the workshop, various initial literature searches were conducted to support the workshop discussions (details on the review process are provided Supplemental material S2).
This perspective article focuses exclusively on presenting the workshop discussions on current findings and research gaps in relation to family caregiving and well-being in adult chronic illness. It is important to acknowledge that both terms - family caregiving and well-being - are very broad and lack precise definition, instead respresenting social and therefore deiscipline-specific constructs that require careful reflection (19). Given this inherent uncertainty and the breadth of workshop discussions, which included theoretical, methodological and ethical considerations, this article is pertaining to family caregiving and well-being in adult chronic illness only to ensure coherence and actionable insights. This focus enables coherence on aspects that were rich and the insights to be actionable. While broader reflections on theoretical and ethical aspects were invaluable, reporting them would risk to dilute clarity. Aware of this, we will first describe the fragmented evidence on family caregiving in chronic illness from the perspective of health and social sciences. Second, we will present how family well-being in chronic illness is assessed and discuss its strengths and limitations. Third, we will stimulate a discussion on the implications for research and practice, providing recommendations for future directions. Therewith, the authors of this perspective article offer several contributions to the current field of (applied science) research with regard to family caregiving and well-being in chronic illness to ensure the sustainable and equitable promotion of family-centered care to support family well-being.
2 Family caregiving in chronic illness
The health sciences have demonstrated a particular interest in family caregivers as proxies for ill people with the aim of providing support and managing illness trajectories (20). The challenges and burdens experienced when providing care for a family member with a chronic illness have been the subject of extensive research and documentation (6, 21, 22). Studies have documented the negative impact of caregiving on physical, emotional, financial, relational, educational, occupational, recreational, and social aspects (23, 24), but have also identified potential stress-relieving effects (25, 26). This research has led to a broad consensus that family caregivers need support, based on the assumption that a causal relationship exists between caregiving responsibilities and overburden (27). However, this view overlooks the diversity of skills and competencies of family caregivers (28). For instance, family members have demonstrated the ability to negotiate different caregiving roles and responsibilities within various family networks, a process that is constantly evolving (29). Health literacy has been reported as being unevenly distributed across families’ social networks and used as a resource when and where needed (30). Therefore, not all family caregivers possess the same competencies and management styles to cope with different strains and thus may differ in their support needs. Moreover, empirical studies on caregiving in families tend to focus on single perspectives, such as those of adult family caregivers (21), of children and young people as family caregivers (31), or of dyadic relationships between spouses (32, 33), thereby almost decontextualizing caregiving from the family and social context (23, 33, 34). Such studies overlook the importance of family relationships and the ways in which they are part of life courses and distinct biographies, while individuals may be both caregivers and care-receivers at the same time (35).
From a social science perspective, the family, as an intergenerational community has demonstrated resilience despite all changes in the context of illness and caregiving challenges (36) and is still considered as a ‘hidden health system’ (37). Women up until now shoulder the primary responsibility of caregiving for chronic illness in the family (5, 38, 39). While men also give care, they apparently face higher levels of stigma (40). At the same time, families are diversifying, with increases in one-child households and patchwork families (35). These dynamic changes in family caregiving suggest that more comprehensive approaches in chronic illness may be needed (41). This is particularly true given the intricate interweaving of chronic illness into family life, with its attendant influence on and influence from gendered family norms, ambivalences of dependence and independence, and the tension between collective “we” identities and individual autonomy (42–44). In addition, the role of the family in caregiving is shaped by economic, educational, social, and health system contexts (36) and involves interactions between informal and formal care systems (45). These dynamics are further influenced by factors such as socioeconomic status, educational attainment, migration-related barriers, and racial discrimination (46, 47), which require further understanding concerning family caregiving.
3 Family well-being in chronic illness
Despite the absence of a universially accepted definition of family well-being in the health sciences, its is understood to be a multidimensional concept encompassing physical, social, economic, and psychological dimensions (48–50). It is often explored through related concepts such as family functioning, resilience, health, and flourishing (49); it is also treated as a dimension of family functioning (51), which is considered to be a cornerstone for assessing the family quality of life (QoL) (52). There is an overall overlap between the different concepts, as for example between QoL and well-being, with the latter being typically used more broadly and holistically (53).
Due to the multidimensional nature of family well-being, various tools have been used to measure it in the context of chronic illness, such as those assessing family QoL (48) or family functioning (54). Although these tools differ in focus, a common feature is that they primarily assess the individual perspective of either the ill person, the primary caregiver, or a family member. However, it is questionable whether the perspective of one member can capture the complexity of a family’s overall well-being (55).
A growing body of literature demonstrates the reciprocal relationship between individual and family well-being (56, 57), highlighting the need for approaches that consider the family as a whole (48, 58, 59). However, tools that capture the perspectives of multiple family members remain limited (60–62). Those available are predominantly validated for traditional “married with child” families and often lack the capacity to provide an overall family score. Furthermore, as recent reviews have highlighted, most measurement tools have been used in studies with participants who were white or presumed to be white (54). As a result, little is known about family well-being and functioning in families from diverse backgrounds.
Moreover, most family well-being measures originate from the late 1970s and early 1990s, drawing primarily on the McMaster Model or the process Model of Family Functioning as well as findings from family interviews (60, 62, 63). These early tools, listed in Table S3 in the Supplementary material, were intended for screening families in need of support and as research instruments. Scholars typically achieved validation by comparing responses from one family member with findings from interviews. The earlier tools show a focus on family functioning, covering dimensions such as problem-solving, communication, roles, affective response, affective involvement, behavior control, as well as values and norms, but not on how such aspects as, e.g., roles are viewed from different perspectives. Subsequent tools narrow their perspective to specific aspects of the original measures (64, 65) or are more closely aligned with QoL frameworks, incorporating domains such as emotional well-being, physical/material/financial well-being, and support (66, 67). Over time, many family well-being assessment tools have emerged, each varying slightly in focus and domain coverage. This proliferation has led to review articles (48, 54, 61) and initiatives1 aimed at cataloging and summarizing existing tools. Despite these efforts, a lack of consensus remains, as single tools only cover partial aspects of family well-being (Table 1).
Table 1. Overview of the different family well-being assessment tools.
4 Discussion
Our interdisciplinary workshop catalyzed an engaging and mutual beneficial learning experience about strengthening the evidence base for family caregiving and well-being in chronic illness. It brought together diverse perspectives and bodies of knowledge from the health and social sciences, highlighting the need for an interdisciplinary approach that acknowledges the complexity and heterogeneity of family caregiving realities across different health and care systems.
A substantial proportion of research has focused on family caregivers of individuals with chronic illnesses. However, the broader family and social context in which these caregivers operate has received comparatively less attention than the study of their relationships (23, 33, 34). Consequently, there is an urgent need for a more comprehensive understanding of family well-being, one that transcends the confines of a single perspective as a proxy. This calls for acknowledging the complexities, diversity, and relational reciprocity inherent in caregiving experiences across diverse families and among their members, while recognizing that family caregiving is inextricably intertwined with the formal care services of the broader welfare system (68–71). This type of evidence is paramount for developing effective support strategies tailored to the needs of family members most in need of support. Only thereby, can we contribute to the overall well-being of the family and address social inequalities within the broader health and care systems. Based on this, the following research and practice recommendations are considered of utmost importance in tackling the challenges ahead for our aging societies. Research and practice recommendations are:
1. Call for interdisciplinary research approaches that integrate health sciences, social sciences, and family studies. Emphasize the importance of intersectionality to explore how family caregiving and well-being in chronic illness is shaped by diverse factors such as gender or socioeconomic status (72).
2. Encourage (longitudinal) research that considers a lifespan perspective and/or the complex, lived realities of diverse families that do not necessarily follow linear causality (54). Focus future research on exploring the interrelated experiences of family members as a unit, rather than in isolation, highlighting the necessity of a systems-thinking lens to examine the complexity of informal-formal caregiving interactions across different health and social systems (11). Such research perspectives would allow for a deeper understanding of the diversity and heterogeneity of families, including their ambivalences (35), while considering the specifics of the health and care system (45, 69).
3. Greater participation of individuals/families in research, practice, and policy so that they can influence agendas in ways that are meaningful to them (73, 74), for example through priority setting (73), while accounting for the diversity of families and those in vulnerable situations.
4. Conduct a concept analysis (75) to develop a conceptual understanding of family well-being. This will lay the groundwork for the development of comprehensive tools that assess family well-being with scales that account for the diverse perspectives and meanings. Such scales could be a valuable addition to a nursing practice’s toolkit for identifying the most vulnerable family situations and members for support interventions.
5. Stronger acknowledgement and integration of a family-centered approach into primary care services and coordination of support services from health to social care.
6. Introduce policy frameworks that support comprehensive family-centered care interventions, which consider the needs of all: the ill person, informal caregiver, and the entire family as a unit, to mitigate health inequalities.
7. Ultimately, such a more comprehensive interdisciplinary approach toward research, policy and practice would enable a more nuanced understanding, which would support the development of targeted and effective interventions for informal caregiving families and improve their overall well-being.
This research perspective integrates evidence, expertise, and knowledge from various disciplines. However, it has some limitations that must be acknowledged. The workshop format encouraged reflective thinking and collaborative learning among scholars of diverse disciplines, ages, and genders. The initial literature searches provided a foundation for the discussions by identifying gaps in the existing literature. Because these searches were not systematic, we may not have considered all available evidence (76), and the discussions may have been influenced by group and power dynamics (77). Nevertheless, the interdisciplinary workshop format enabled us to contextualize the identified evidence within various scholarly traditions (78). This provided a more comprehensive overview than would have been possible otherwise (78), allowing us to generate ideas for innovating research on the matter openly. The discussions also addressed theoretical underpinnings and ethical considerations of family caregiving in adult chronic illness. When discussing ethical aspects in family research from an interdisciplinary perspecptive, divergent epistemic frames of references were encountered (79), with the emerging complexity extending beyond the scope of this article.
5 Conclusion
The complexities of family well-being in the context of chronic illness are characterized by a fragmentation of focus, with a prevailing emphasis on the perspectives of caregivers within the field of health sciences, who are considered proxies for the chronically ill person. It is imperative to recognize the necessity of an interdisciplinary and more comprehensive approach to understand the complexity of caregiving for chronically ill people within diverse and changing families, as this is the only way to ensure health equity in the context of an aging society undergoing social change.
Data availability statement
The original contributions presented in the study are included in the article/Supplementary material, further inquiries can be directed to the corresponding author/s.
Author contributions
BS: Funding acquisition, Conceptualization, Investigation, Writing – original draft, Writing – review & editing, Supervision. RV: Project administration, Funding acquisition, Conceptualization, Formal analysis, Writing – original draft, Writing – review & editing, Data curation, Investigation, Methodology. JH: Writing – review & editing. TF: Writing – review & editing. CR: Writing – review & editing. LG: Writing – review & editing. BB: Writing – review & editing. SM: Writing – review & editing. MN-C: Writing – review & editing.
Funding
The author(s) declare that financial support was received for the research and/or publication of this article. The authors declare that the content of this manuscript is based on a scientific exchange workshop which was funded by the Swiss National Science Foundation (no. 222885). Open access funding was provided by the University of Vienna.
Acknowledgments
The authors acknowledge and thank for the support of Elena Alder, Josip Jurisic, and Sarah Rabhi-Sidler (Careum School of Health, Kalaidos University of Applied Sciences, Switzerland) in preparing, organizing and supporting the successful realization of the workshop. We also are grateful for the academic support of Doris Schaeffer (Hertie School of Governance and University of Bielefeld, Germany). The draft mansucript was written by the two first co-authors who are native speakers of German, respectively Dutch. To ensure that the manuscript was written in correct American English, proofreading assistance was provided by DeepL Write where felt needed to ensure concise use of grammar and wording. A final proofreading was carried out by all co-authors to check for accuracy of content as well as to make and approve linguistic adjustments.
Conflict of interest
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Generative AI statement
The authors declare that no Gen AI was used in the creation of this manuscript.
Any alternative text (alt text) provided alongside figures in this article has been generated by Frontiers with the support of artificial intelligence and reasonable efforts have been made to ensure accuracy, including review by the authors wherever possible. If you identify any issues, please contact us.
Publisher’s note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
Supplementary material
The Supplementary material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpubh.2025.1619672/full#supplementary-material
Footnotes
1. ^https://healthychild.ucla.edu/programs/life-course-translational-research-network/resources/family-functioning-measures; https://internationalfamilynursing.org/resources-for-family-nursing/research/measurement-resources/; https://fam-net.org/instruments-family/page/3/?product_cat=fwb.
References
1. Theofilou, P. Perceived social support among patients and the contribution in the management of the chronic disease: a brief review. Ser Clin Med Case Rep Rev. (2023) 1:9. doi: 10.54178/2993-3579.v1i5a2012
2. Brennan, P, Perola, M, van Ommen, G-J, and Riboli, E. Chronic disease research in Europe and the need for integrated population cohorts. Eur J Epidemiol. (2017) 32:741–9. doi: 10.1007/s10654-017-0315-2
3. Ces, S, Hlebec, V, and Yghemonos, S. Valuing informal Care in Europe - analytical review of existing valuation methods. (2019).
4. Fischer, J, Frisina Doetter, L, and Rothgang, H. Comparing long-term care systems: a multi-dimensional, actor-centred typology. Soc Policy Adm. (2022) 56:33–47. doi: 10.1111/spol.12742
5. Haley, WE, and Elayoubi, J. Family caregiving as a global and lifespan public health issue. Lancet Public Health. (2024) 9:e2–3. doi: 10.1016/S2468-2667(23)00227-X
6. Schulz, R, Beach, SR, Czaja, SJ, Martire, LM, and Monin, JK. Family caregiving for older adults. Annu Rev Psychol. (2020) 71:635–59. doi: 10.1146/annurev-psych-010419-050754
7. Nagl-Cupal, M, Kolland, F, Zartler, U, Mayer, H, Bittner, M, and Koller, M. Angehörigenpflege in Österreich. Einsicht in die Situation pflegender Angehöriger und in die Entwicklung informeller Pflegenetzwerke. Wien: Universität Wien. (2018). Available online at https://broschuerenservice.sozialministerium.at/Home/Download?publicationId=664 (Accessed September 26, 2024).
8. O'Gara, G, Wiseman, T, Doyle, A-M, and Pattison, N. Chronic illness and critical care-a qualitative exploration of family experience and need. Nurs Crit Care. (2023) 28:574–84. doi: 10.1111/nicc.12817
9. Otto, U, Leu, A, Bischofberger, I, Gerlich, R, Riguzzi, M, Jans, C, et al. Bedürfnisse und Bedarf von betreuenden Angehörigen nach Unterstützung und Entlastung – eine Bevölkerungsbefragung. Schlussbericht Forschungsprojekt G01a, Förderprogramm Entlastungsangebote für betreuende Angehörige 2017–2020. Im Auftrag des Bundesamts für Gesundheit (BAG). Zürich/Bern. (2019).
10. Statistisches Bundesamt. Zahl der Pflegebedürftigen steigt bis 2070 deutlich an. (2024). Available online at https://www.destatis.de/DE/Themen/Gesellschaft-Umwelt/Gesundheit/Pflege/aktuell-vorausberechnung-pflegebeduerftige.html (Accessed September 26, 2024).
11. Schulz, R, Beach, SR, Friedman, EM, Martsolf, GR, and Rodakowski, J. A. Everette 3rd James changing structures and processes to support family caregivers of seriously ill patients. J Palliat Med. (2018) 21:S36–42. doi: 10.1089/jpm.2017.0437
12. Turner, LH, and West, R. The challenge of defining 'family' In: J Reich, editor. The state of families. Law, policy, and the meanings of relationships. New York: Routledge (2020). 10–25.
13. Devaney, C, Donald, MM, and Holzer, J. A social justice perspective on the delivery of family support. Child Youth Serv Rev. (2024) 159:107494. doi: 10.1016/j.childyouth.2024.107494
15. Roth, DL, Fredman, L, and Haley, WE. Informal caregiving and its impact on health: a reappraisal from population-based studies. The Gerontologist. (2015) 55:309–19. doi: 10.1093/geront/gnu177
16. Schönberger, C. Familie und Gesundheit In: J Ecarius and A Schierbaum, editors. Handbuch Familie: Band I: Gesellschaft, Familienbeziehungen und differentielle Felder. Wiesbaden: Springer Fachmedien Wiesbaden (2022). 589–609.
17. Vladova, G, Haase, J, and Friesike, S. Why, with whom, and how to conduct interdisciplinary research? A review from a researcher’s perspective. Sci Public Policy. (2024) 52:165–80. doi: 10.1093/scipol/scae070
18. Gardiner, P. Learning to think together: creativity, interdisciplinary collaboration and epistemic control. Think Skills Creat. (2020) 38:100749. doi: 10.1016/j.tsc.2020.100749
19. Thomas, PA, Liu, H, and Umberson, D. Family relationships and well-being. Innov Aging. (2017) 1:igx025. doi: 10.1093/geroni/igx025
20. Zhang, Y. Family functioning in the context of an adult family member with illness: a concept analysis. J Clin Nurs. (2018) 27:3205–24. doi: 10.1111/jocn.14500
21. Choi, JY, Lee, SH, and Yu, S. Exploring factors influencing caregiver burden: a systematic review of family caregivers of older adults with chronic illness in local communities. Healthcare. (2024) 12:1002. doi: 10.3390/healthcare12101002
22. Lim, J-w, and Zebrack, B. Caring for family members with chronic physical illness: a critical review of caregiver literature. Health Qual Life Outcomes. (2004) 2:50. doi: 10.1186/1477-7525-2-50
23. Golics, CJ, Basra, MKA, Salek, MS, and Finlay, AY. The impact of patients' chronic disease on family quality of life: an experience from 26 specialties. Int J Gen Med. (2013) 6:787–98. doi: 10.2147/IJGM.S45156
24. Jika, BM, Khan, HTA, and Lawal, M. Exploring experiences of family caregivers for older adults with chronic illness: a scoping review. Geriatr Nurs. (2021) 42:1525–32. doi: 10.1016/j.gerinurse.2021.10.010
25. Mehri, N, Kinney, J, Brown, S, and Rajabi Rostami, M. Informal caregiving and all-cause mortality: a meta-analysis of longitudinal population-based studies. J Appl Gerontol. (2021) 40:781–91. doi: 10.1177/0733464819893603
26. Roth, DL, Brown, SL, Rhodes, JD, and Haley, WE. Reduced mortality rates among caregivers: does family caregiving provide a stress-buffering effect? Psychol Aging. (2018) 33:619–29. doi: 10.1037/pag0000224
27. Lindt, N, van Berkel, J, and Mulder, BC. Determinants of overburdening among informal carers: a systematic review. BMC Geriatr. (2020) 20:304. doi: 10.1186/s12877-020-01708-3
28. Jung, S, Song, J-A, Kim, J, and Cheon, H. Family caregiver competence in managing behavioral and psychological symptoms of dementia: a concept synthesis. Jpn J Nurs Sci. (2022) 19:e12462. doi: 10.1111/jjns.12462
29. Nagl-Cupal, M, Parisot, V, Stöhr, D, and Zartler, U. Towards a typology of negotiating care in families: a qualitative multiple perspectives study in Austria. Int J Care Caring. (2023) 1:1–21. doi: 10.1332/239788221X16764028221810
30. Edwards, M, Wood, F, Davies, M, and Edwards, A. 'Distributed health literacy': longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long-term health condition. Health Expect. (2015) 18:1180–93. doi: 10.1111/hex.12093
31. Lacey, RE, Xue, B, and McMunn, A. The mental and physical health of young carers: a systematic review. Lancet Public Health. (2022) 7:e787–96. doi: 10.1016/S2468-2667(22)00161-X
32. Bertschi, IC, Meier, F, and Bodenmann, G. Disability as an interpersonal experience: a systematic review on dyadic challenges and dyadic coping when one partner has a chronic physical or sensory impairment. Front Psychol. (2021) 12:624609. doi: 10.3389/fpsyg.2021.624609
33. Weitkamp, K, Feger, F, Landolt, SA, Roth, M, and Bodenmann, G. Dyadic coping in couples facing chronic physical illness: a systematic review. Front Psychol. (2021) 12:740. doi: 10.3389/fpsyg.2021.722740
34. Helgeson Vicki, S, and Zajdel, M. Adjusting to chronic health conditions. Annu Rev Psychol. (2017) 68:545–71. doi: 10.1146/annurev-psych-010416-044014
35. Jurczyk, K. UnDoing family. Bestandsaufnahme und Bezüge des Konzepts In: A Schierbaum, J Ecarius, D Krinninger, and U Uhlendorff, editors. Familie, wozu? Eine Bestandsaufnahme konzeptioneller und theoretischer Perspektiven in der erziehungswissenschaftlichen Forschung zu Familie. Wiesbaden: Springer Fachmedien Wiesbaden (2023). 15–35.
36. Ohlbrecht, H. Familie und Krankheit In: J Ecarius and A Schierbaum, editors. Handbuch Familie: Gesellschaft und differentielle Felder. Wiesbaden: Springer (2021). 1–19.
37. Schönberger, C. Gesundheit und Familie In: J Ecarius and A Schierbaum, editors. Handbuch Familie. Gesellschaft, Familienbeziehungen und differentielle Felder. Wiesbaden: Springer Fachmedien (2020). 1–21.
38. Fratzscher, M. Diese Rentenreform ist für Frauen eine verpasste Chance. DIW Berlin. (2024). Available online at https://www.diw.de/de/diw_01.c.896494.de/nachrichten/diese_rentenreform_ist_fuer_frauen_eine_verpasste_chance.html (Accessed September 26, 2024).
39. Lancet Public Health. Unpaid carers: a silent workforce. Lancet Public Health. (2024) 9:e1. doi: 10.1016/S2468-2667(23)00311-0
40. Zwar, L, Angermeyer, MC, Matschinger, H, Riedel-Heller, SG, König, H-H, and Hajek, A. Are informal family caregivers stigmatized differently based on their gender or employment status?: a German study on public stigma towards informal long-term caregivers of older individuals. BMC Public Health. (2021) 21:1868. doi: 10.1186/s12889-021-11955-7
41. Dermott, E, and Fowler, T. What is a family and why does it matter? Soc Sci. (2020) 9:83. doi: 10.3390/socsci9050083
42. Hillcoat-Nallétamby, S, and Phillips, JE. Sociological ambivalence revisited. Sociology. (2011) 45:202–17. doi: 10.1177/0038038510394018
43. Nave-Herz, R. Familiensoziologie. Historische Entwicklung, theoretische Ansätze, aktuelle Themen In: A Wonneberger, K Weidtmann, and S Stelzig-Willutzki, editors. Familienwissenschaft. Grundlagen und Überblick. Wiesbaden: Springer VS (2018). 119–47.
44. Widmer, ED. The configurational approach to families: methodological suggestions In: AM Castrén, V Česnuitytė, I Crespi, JA Gauthier, R Gouveia, and C Martin, editors. The Palgrave handbook of family sociology in Europe. Cham: Springer International Publishing (2021). 107–31.
45. Calvó-Perxas, L, Vilalta-Franch, J, Litwin, H, Mira, P, and Garre-Olmo, J. A longitudinal study on public policy and the health of in-house caregivers in Europe. Health Policy. (2021) 125:436–41. doi: 10.1016/j.healthpol.2021.02.001
46. Amirpur, D. Migrationsbedingt behindert? Familien im Hilfesystem. Eine intersektionale Perspektive. Bielefeld: Transcript Verlag (2016).
47. Engelbert, A. Familien im Hilfenetz. Bedingungen und Folgen der Nutzung von Hilfen für behinderte Kinder. Weinheim, München: Juventa-Verl (1999).
48. Alnahdi, GH, Alwadei, A, Woltran, F, and Schwab, S. Measuring family quality of life: scoping review of the available scales and future directions. Int J Environ Res Public Health. (2022) 19:473. doi: 10.3390/ijerph192315473
49. Crandall, AA, Holmes, EK, Villalon, SE, Weiss-Laxer, NS, and Berge, JM. A conceptual model of family well-being: bridging constructs, fields, and practice applications. J Fam Theory Rev. (2023) 16:431–48. doi: 10.1111/jftr.12543
50. Wollny, I, Apps, J, and Henricson, C. Can government measure family wellbeing? A literature review. London: Family and Parenting Institute (2010).
51. Timmerby, N, Cosci, F, Watson, M, Csillag, C, Schmitt, F, Steck, B, et al. A confirmative clinimetric analysis of the 36-item family assessment device. Nord J Psychiatry. (2018) 72:268–72. doi: 10.1080/08039488.2018.1435721
52. Brown, I, Brown, RI, Bau, NT, Isaacs, B, Myerscough, T, Neikrug, SM, et al. Family quality of life survey. Main caregivers of people with intellectual or developmental disabilities. (2006). Available online at http://www.surreyplace.ca/documents/fqls%20files/fqol-survey-id-dd-with-variable-names-may-08.pdf.
53. Pinto, S, Fumincelli, L, Mazzo, A, Caldeira, S, and Martins, JC. Comfort, well-being and quality of life: discussion of the differences and similarities among the concepts. Porto Biomed J. (2017) 2:6–12. doi: 10.1016/j.pbj.2016.11.003
54. Ramaswami, SB, Jensen, T, Berghaus, M, De-Oliveira, S, Russ, SA, Weiss-Laxer, N, et al. Family health development in life course research: a scoping review of family functioning measures. Pediatrics. (2022) 149:509. doi: 10.1542/peds.2021-053509J
55. Mora, CF, Ibáñez, A, and Balcells-Balcells, A. State of the art of family quality of life in early care and disability: a systematic review. Int J Environ Res Public Health. (2020) 17:220. doi: 10.3390/ijerph17197220
56. Elizarov, E, Konshina, T, Benish-Weisman, M, Lee, TK, van Ryzin, M, Vos, SR, et al. Family functioning, well-being, and mental health among new immigrant families. J Fam Psychol. (2023) 37:806–17. doi: 10.1037/fam0001092
57. Krys, K, Capaldi, CA, Zelenski, JM, Park, J, Nader, M, Kocimska-Zych, A, et al. Family well-being is valued more than personal well-being: a four-country study. Curr Psychol. (2021) 40:3332–43. doi: 10.1007/s12144-019-00249-2
58. Hsiao, Y-J. Autism spectrum disorders: family demographics, parental stress, and family quality of life. J Policy Pract Intellect Disabil. (2018) 15:70–9. doi: 10.1111/jppi.12232
59. Samuel, PS, Rillotta, F, and Brown, I. Review: the development of family quality of life concepts and measures. J Intell Disabil Res. (2012) 56:1–16. doi: 10.1111/j.1365-2788.2011.01486.x
60. Epstein, NB, Baldwin, LM, and Bishop, DS. The McMaster family assessment device*. J Marital Fam Ther. (1983) 9:171–80. doi: 10.1111/j.1752-0606.1983.tb01497.x
61. Hamilton, E, and Carr, A. Systematic review of self-report family assessment measures. Fam Process. (2016) 55:16–30. doi: 10.1111/famp.12200
62. Moos, R. Family environment scale preliminary manual. Palo Alto, CA: Consulting Psychologists Press (1974).
63. Skinner, H, Steinhauer, P, and Sitarenios, G. Family assessment measure (FAM) and process model of family functioning. J Fam Ther. (2000) 22:190–210. doi: 10.1111/1467-6427.00146
64. Hoge, RD, Andrews, DA, Faulkner, P, and Robinson, D. The family relationship index: validity data. J Clin Psychol. (1989) 45:897–903. doi: 10.1002/1097-4679(198911)45:6<897::AID-JCLP2270450611>3.0.CO;2-T
65. Mansfield, AK, Keitner, GI, and Sheeran, T. The brief assessment of family functioning scale (BAFFS): a three-item version of the general functioning scale of the family assessment device. Psychother Res. (2019) 29:824–31. doi: 10.1080/10503307.2017.1422213
66. Hoffman, L, Marquis, J, Poston, D, Summers, JA, and Turnbull, A. Assessing family outcomes: psychometric evaluation of the Beach Center family quality of life scale. J Marriage Fam. (2006) 68:1069–83. doi: 10.1111/j.1741-3737.2006.00314.x
67. Krecht, M. Familienlebensqualität. Ein Vergleich von Familien mit Kindern mit und ohne intellektuelle Behinderung unter Berücksichtigung der individuellen Lebensqualität und des Copingverhaltens der Hauptbetreuungspersonen. Universität Wien (2010).
68. Böhm, K, Schmid, A, Götze, R, Landwehr, C, and Rothgang, H. Five types of OECD healthcare systems: empirical results of a deductive classification. Health Policy. (2013) 113:258–69. doi: 10.1016/j.healthpol.2013.09.003
69. Cash, B, Hodgkin, S, and Warburton, J. A transformative approach to systems theory in caregiving research. Qual Soc Work. (2019) 18:710–26. doi: 10.1177/1473325017749988
70. Piel, MH, Geiger, JM, Julien-Chinn, FJ, and Lietz, CA. An ecological systems approach to understanding social support in foster family resilience. Child Fam Soc Work. (2017) 22:1034–43. doi: 10.1111/cfs.12323
71. Reibling, N, Ariaans, M, and Wendt, C. Worlds of healthcare: a healthcare system typology of OECD countries. Health Policy. (2019) 123:611–20. doi: 10.1016/j.healthpol.2019.05.001
72. Stadtmann, MP, Bischofberger, I, Balice-Bourgois, C, Bianchi, M, Burr, C, Fierz, K, et al. Setting new priorities for nursing research: the updated Swiss nursing research agenda-a systematic, participative approach. Int Nurs Rev. (2024) 71:504–12. doi: 10.1111/inr.12937
73. Greenhalgh, T, Hinton, L, Finlay, T, Macfarlane, A, Fahy, N, Clyde, B, et al. Frameworks for supporting patient and public involvement in research: systematic review and co-design pilot. Health Expect. (2019) 22:785–801. doi: 10.1111/hex.12888
74. Kolade, OR, Porat-Dahlerbruch, J, Makhmutov, R, van Achterberg, T, and Ellen, ME. Strategies for engaging older adults and informal caregivers in health policy development: a scoping review. Health Res Policy Syst. (2024) 22:26. doi: 10.1186/s12961-024-01107-9
75. Smith, S, and Mörelius, E. Principle-based concept analysis methodology using a phased approach with quality criteria. Int J Qual Methods. (2021) 20:57995. doi: 10.1177/16094069211057995
76. Sutton, A, Clowes, M, Preston, L, and Booth, A. Meeting the review family: exploring review types and associated information retrieval requirements. Health Inf Libr J. (2019) 36:202–22. doi: 10.1111/hir.12276
77. Oberhelman, R, Anticona, C, Correa, M, Malpartida, H, Pajuelo, M, Paz-Soldan, V, et al. Interdisciplinary postdoctoral training in global health through a novel joint project for trainees from diverse disciplines: benefits, risks, and observations. Am J Trop Med Hyg. (2016) 96:402. doi: 10.4269/ajtmh.16-0402
78. Mahringer, CA, Baessler, F, Gerchen, MF, Haack, C, Jacob, K, and Mayer, S. Benefits and obstacles of interdisciplinary research: insights from members of the young academy at the Heidelberg Academy of Sciences and Humanities. iScience. (2023) 26:108508. doi: 10.1016/j.isci.2023.108508
Keywords: family caregiving, family well-being, chronic illness, health equity, interdisciplinarity
Citation: Schwind B, Visscher R, Haslbeck J, Falkenstein T, Riewoldt C, Griese L, Behrisch B, Metzing S and Nagl-Cupal M (2025) Understanding family caregiving and well-being in adult chronic illness: a call for a more comprehensive perspective. Front. Public Health. 13:1619672. doi: 10.3389/fpubh.2025.1619672
Edited by:
Toni P. Miles, Rosalynn Carter Institute for Caregivers, United StatesReviewed by:
Stephanie Smith, Curtin University, AustraliaCopyright © 2025 Schwind, Visscher, Haslbeck, Falkenstein, Riewoldt, Griese, Behrisch, Metzing and Nagl-Cupal. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Martin Nagl-Cupal, bWFydGluLm5hZ2wtY3VwYWxAdW5pdmllLmFjLmF0
†These authors have contributed equally to this work