Changing dynamics of caregiving: a meta-ethnography study of informal caregivers’ experiences with older immigrant family members in Europe

The population of Europe is ageing and becoming more ethnically diverse due to migration [1]. Europe has experienced significant flows of refugees and immigrants from non-European countries since the late 2000s [1]. Though many immigrants are young adults, the number of older immigrants is increasing [1, 2]. As people age, they have more significant healthcare needs than the general population [3‐5]. They are, e.g., more likely to experience multimorbidity [6] and are prone to several chronic conditions such as; hearing loss, cataracts and refractive errors, back and neck pain and osteoarthritis, chronic obstructive pulmonary disease, diabetes, depression, dementia, cancer or stroke [7]. Particularly among non-European older immigrants, self-rated health, well-being, and mental health status tend to be lower than the majority population, with steeper health decline in later life [1].

Finding suitable long-term caring arrangements for older immigrants in Europe has been one of healthcare policymakers’ concerns in the last decade [8, 9]. However, ageing immigrants often have poor access to healthcare due to their lower socioeconomic status [10, 11], limited health information on available services [11], limited language skills [12], difficulty in navigating health systems [13], as well as a lack of cultural sensitivity within some health services [14]. In addition, relatively few older people with an immigrant background live in long-term care facilities such as nursing homes [1, 15] and many prefer to be cared for by their family members [1, 16‐18]. Furthermore, the capacity of family members to assume caregiving roles is often shaped by cultural norms, filial obligations [2, 18, 19], and gender roles [16, 20, 21].

In general, among both immigrant and non-immigrant populations, family caregivers such as family members, friends, and neighbours provide as much as 90% of in-home long-term care needed by older adults [22], and the primary caregiving responsibilities remain largely with the female family members [20]. There is uncertainty about family caregivers’ ability and willingness to assume the full responsibility of caregiving, although most children feel responsible and are motivated to care for their older relatives [2, 13].The experiences of providing care also tend to vary between different generations [2, 23, 24]. Caregiving to older adults enhances family caregivers’ personal growth, self-efficacy, satisfaction, appreciation of life and closer relationship with care receivers [25, 26]. Nevertheless, family caregivers of older adults have been found vulnerable to poor health outcomes from physical challenges to chronic stress, anxiety, feelings of guilt, and embarrassment [12, 13, 16, 27, 28], as well as social isolation and limited social networks [13] due to overwhelming caregiving burden.

There is a need to identify the experiences of family caregivers with an immigrant background to understand how better support can be provided to those caring for an older relative, thereby achieving better cooperation between family caregivers and formal care services. However, there is still limited research on the issue of informal caregiving among immigrants. Research in the area of caregiving within immigrant families mostly addresses the caregiving of older adults with dementia [12, 13, 29‐31]. There is no review study so far addressing the experiences of immigrant-background family caregivers who are caring for older relatives with no specific diagnosis or diseases other than dementia. Thus, this review study aims to synthesize the qualitative literature exploring the experiences of individuals with an immigrant background in caring for older family members from Africa, Asia and South America living in Europe. It emphasizes understanding the meaning of caregiving for family members from different generations and how caregiving has been negotiated in their day-to-day life.

In this study we use meta-ethnography developed by Noblit and Hare (1988), a seven-step interpretive methodology for qualitative synthesis [32] which is a widely used approach in health and social care [33]. It facilitates interpretative synthesis by systematically comparing conceptual data from primary qualitative research to identify and develop new overarching concepts, theories, and models by preserving the original meanings and contexts of study concepts [32]. The seven-step analysis includes the following phases: 1) getting started, 2) deciding what is relevant to the initial interest, 3) reading the studies, 4) determining how the studies are related, 5) translating studies into one another, 6) synthesizing the translations and 7) expressing the synthesis. The process is iterative and the phases may occur in a less linear way [32]. We followed the operationalized guidelines developed by Sattar et al. [34], based on the original seven steps as developed by Noblit & Hare [34].

The core theme that emerged through our analysis was “changing dynamics of caregiving”. The four themes, representing informal caregivers’ experiences of caring for older family members with an immigrant background in Europe – namely strong care norms towards parents, the moral dilemma of continuing care, uneven care sharing, and use of formal care services – are presented in the following sections, with illustrative quotations from the primary studies.

Though expectations of caring for older relatives were high within families of immigrant background, our results show that the dynamics of caregiving are changing, as illustrated in Fig. 2. It signifies that the meaning and approaches attached to caregiving are constantly changing and so are the experiences of family caregivers. The perceptions of continuing caregiving for older family members varied from satisfaction of cultural fulfillment to burdening duty, whereas the perceived necessity of dividing caregiving responsibilities among family members is growing, given their circumstances in the host countries.

In this review study, we performed a meta-ethnographic synthesis exploring immigrants’ caregiving experiences with older family members from Asia, Africa and South America living in Europe. Our main findings illustrate the meaning of caregiving across the different generations caring for older family members with an immigrant background and show how caregiving to older adults varies in the given context of caregivers.

The review study highlighted cultural norms, filial obligations, reciprocity, and moral obligations as ideal reasonings for continuing care. This is in line with another previous study that shows how relational, normative, moral and affective dimensions of caregiving reflect notions of care [19]. The care norms among caregivers were strong and were a part of cultural and religious obligations. Providing care was perceived as an opportunity to reciprocate parental love and support by adult children [2, 18]. Similarly, the studies in our review study showed that many caregivers felt gratitude toward their parents and were intrinsically motivated to provide care as they considered it was the right thing to do. Other review studies reported that immigrant-background caregivers have a deep sense of pride and satisfaction in caring for a family member [12, 13], leading to psychological rewards and personal growth [25, 26].

Nevertheless, there appears to be an intergenerational shift in caregiving motivation for some, from a culturally normative obligation to a morally induced filial duty/familial responsibility. Although the motivation might change for some, for others it is either mixed or unchanged as the feeling of satisfaction for fulfilling cultural, religious, and moral duties was common among many caregivers. Many caregiver participants who were born in their parents’ home country but migrated with their parents in early childhood, felt obliged to care and adhere to caregiving norms. However, they expressed having fewer expectations to be cared for by their family, as shown by a review study on older immigrants in the United Kingdom [23]. Immigrants and their children’s cultural traditions contain two or more competing and sometimes contradictory cultural and moral systems that are associated with different places [24]. Younger generations who have lived in the receiving country for a more extended period seem more likely to internalize natives’ values, norms and expectations about family relationships [2]. As such, an acculturation gap arises between the younger generation and their parents, because of this dual socialization to their parents’ values as well as to the values of the destination society [54].

Our review highlighted the caregiver participants’ desire to adjust traditional caregiving norms in line with the host country’s caregiving perspectives, so that they could have a choice and alternatives to care for their family members. However, our review also shows that when providing caregiving to older family members is the norm, unwillingness or failure to comply with such norms leads to guilt, shame, and social exclusion among caregivers. This finding is also supported by an empirical study conducted in Norway which showed that seeking help from healthcare services could hence be considered a sign of failure to fulfill one’s familial obligations [17]. As such, the caregivers experience a moral dilemma between their changing values due to acculturation and the traditional expectations of older community members.

Though some caregivers wished to continue caregiving and felt morally obliged to do so, adhering to the ideal caregiving roles was difficult as their caregiving role often overlapped with childrearing. This notion is often addressed as sandwich caregiving [55]. Further, another qualitative study highlighted the intra-role conflict experienced by caregivers due to conflicting expectations from their different roles, eldercare, childrearing, and needs of family and friends, making caregiving a burden for them [56]. Thus, there is uncertainty about their ability and willingness to assume full responsibility for such care [57]. Consistent with previous literature, our review highlighted the intra-role conflict of caregivers and conflicting expectations. Such situations can lead to caregivers experiencing moral dilemmas resulting in complex decision-making between the continuation of informal caregiving or choosing alternatives to such caregiving.

The participants in the included studies in this review were primary caregivers, and most of them shared the role of caregiving, albeit unevenly. It resulted in higher caregiving responsibilities among family members, particularly for women. Our review showed the notable gender disparities in the distribution of caregiving duties, where women predominantly took on the caregiving role. Similar findings are also present in previous literature [2, 9, 12, 13, 20]. Most caregivers were daughters, daughters-in-law, or wives to care receivers. In general, daughters, on average, provide twice as much care to their ageing parents as sons [58]. This disproportionate involvement of women in caregiving is often attributed to gender stereotypes that frame caregiving as a “feminine type” of activity [21] and results in women anticipating their caregiving role not as something new but rather as an extension of their existing feminine roles [20]. Further, who takes up the caregiving role and to what extent they experience challenges is influenced by their specific circumstances of family support and relationships, income, employment, and proximity to the care recipient, among others. In line with this finding, another study has argued that social circumstances may allow only certain people to cope effectively [19]. Intertwined with gendered expectations of caregiving, women are likely to experience additional challenges in navigating their role as a caregiver [16, 19, 20]. A systematic review on gendered experiences of informal caregiving for older people demonstrated a higher burden of caregiving among women than men, stating that women are emotionally involved in caregiving and less likely to ask for support. In contrast, men are task-oriented and more likely to ask for support [20].

Most of the included studies in the review reported the high care burden among caregivers resulting in burnout, characterized by constant stress, limited mobility, and lack of time for oneself. Several previous studies also emphasized the physical, emotional, psychological, and socio-economic burden experienced by caregivers [12, 13, 16, 28] and showed them having a higher risk of adverse health consequences, such as depression, with higher subjective burden of care [27]. A noticeable finding in our review is the difficulty, particularly for sole caregivers, to continue their caregiving and highlighted their desire to share caregiving responsibilities with other family members. As a result, rotation care practices were evolving, either by having older adults live with different family members or by having different family members take turns to move in with older adults, visiting weekly or staying nearby. There was a shift of caregiving to older adults from individual to group responsibilities, and caregivers expressed caregiving as teamwork. A study from Denmark among minority families demonstrated similar results, concluding that new caregiving approaches emerged as ways to alleviate or distribute the burden of care between siblings [18]. Other studies [12, 13, 59] mentioned alternative caregiving approaches like employing a full-time maid or undocumented domestic helper, temporary relocation to the home country, or organizing a care marriage.

Furthermore, our review showed that caregivers’ desire to share caregiving responsibilities with family members often caused family conflicts. Similarly, a qualitative study from Netherlands among family caregivers with immigrant backgrounds reported disappointments among caregivers over non-caregiving family members, which led to tensions and sometimes conflicts, usually left unspoken, that later contributed to their emotional and physical exhaustion [16]. Hence, the sole caregivers are left vulnerable with a higher burden of care. Regardless of the high caregiving burden, caregivers’ ways of coping were found to be limited in our study. They often released their stress by crying, sought religious support by praying or tried to ignore their burden until those stresses become habitual to them. The gender stereotypes which make caregiving a normative part of women’s family life may impact the choices and coping strategies that eventually prohibit women from seeking help and interventions [20]. Passive coping strategies like forgiveness, tolerance, or contentment were found among Chinese American caregivers [60]. Though supports such as training, respite care, and counseling have effectively reduced the burden of caregiving [9], such support/coping strategies were lacking among participants in our review study, demonstrating the inaccessibility of culturally sensitive healthcare services among family caregivers.

Many studies highlighted language as a significant barrier to accessing available services [1, 12‐14, 61], but our review asserts that the inaccessibility of available services goes beyond some immigrants’ limited language skills. The lack of information about available formal services further makes these services inaccessible to those who want to explore alternatives to informal caregiving, hence limiting them from seeking support. Similarly, the systematic review about informal caregiving among migrants mentioned that the preconceived ideas about the inappropriateness of support and public healthcare might also prevent caregivers from seeking or accepting formal support. Moreover, two systematic reviews [12, 13] on family caregivers’ experiences of providing care for family members from minority ethnic groups living with dementia reported poor health literacy among caregivers.

In accordance with our review, previous research [2, 14, 16‐18, 61] show that the caregiving norm and the perceived responsibility of ‘taking care of their own’ hinder the use of home-care services and other forms of professional care among people with an immigrant background. The perceived poor cultural sensitivity of available services makes caregivers reluctant to search for alternatives to informal caregiving. Many caregivers who had experience of using formal services in our review had negative experiences with health care professionals. They had skeptical views about health services/care institutions and felt ignored by the health system, which was not uncommon among family caregivers of the other two review studies on dementia [12, 13]. The current review showed caregivers’ stressful experiences with the health system and mentioned that it often failed to address the emotional aspects or what caregiving to their older family members means to them. Some studies also reveal that a lack of cultural competency among professionals’ results in poor acknowledgment of older adults’ religious rituals, dietary practices, or gender matching [1, 14, 61]. This shows the need for cultural competence training for health and long-term care professionals. Support for informal caregivers would help avoid overburden and ensure access to formal care when needed.

Our meta-ethnographic review contributes to a better understanding of informal caregiving and has critical implications for further research. Knowledge about differing meanings of caregiving and caregiving responsibilities enhances understanding about informal caregivers’ situations and would aid in reducing their care burden while ensuring access to formal care when needed. There is also need for more knowledge about how the changing dynamics of caregiving may be further influenced by the institutional settings, immigrants’ ethnic backgrounds, and other social circumstances. Further, it will be useful to explore the care expectations across different generations, particularly the children of immigrants, and to see how their socialization in two cultures influences care norms as they age. Further, more knowledge about caregivers’ coping strategies, and their motivations for adopting them, would aid in developing better support measures in the long term.

Strong care norms towards caring for older family members is a reality for many immigrant communities. The motivation behind caregiving is rooted not only in culturally normative obligations but also in morally induced familial responsibilities. The motivation and approaches to caregiving, while unique to individual caregivers, are also dynamic. Family caregivers’ contextual realities pose constraints on the continued expectations of informal care. Caregiving is thus burdensome, especially for those without formal and informal support systems. This is compounded by the continued gendered nature of caregiving which often results in greater expectations and care burden for women.