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.

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.

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).

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:

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.

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.