Different senses of one’s place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia

Abstract

Western dementia care policies emphasise that family caregivers from minority ethnic backgrounds must become more engaged in healthcare services. However, research exploring experiences of receiving services such as home-based care, and thus adjustment to the service, among family caregivers from minority ethnic backgrounds who have relatives with dementia is still scarce. Therefore, inspired by Pierre Bourdieu’s theoretical concepts of field, habitus and capital, we explored how family caregivers from different minority ethnic backgrounds justified decisions about whether to receive home-based care and their social adjustment to the service. Using empirical data from semi-structured interviews with nine family caregivers from different minority ethnic backgrounds, we demonstrated that different mindsets and available social resources gave rise to various actions. Although some family caregivers were optimistic about receiving home-based care, our findings point to tensions between the ideals of care practices and the organisational structures surrounding home-based care as a service. Among those who had experiences with home-based care, we found that organisational limitations, particularly in terms of efficiency demands and time constraints, influenced their behaviours and thus their social adjustments to the service. For some, these limitations eventually resulted in cancellation of the service. However, not all had the same opportunities to make these decisions, indicating that, although family caregivers from minority ethnic backgrounds receive home-based care, this does not necessarily entail a deficiency-free service. Furthermore, we argue that public discourses on this subject can be challenged by encouraging one to look beyond ethnic and cultural labels towards other factors, such as organisational structures, that might largely influence the use of home-based care among these family caregivers.

Keywords

Bourdieu dementia family caregivers home-based care minority ethnic backgrounds social adjustment

Introduction

The number of people living with dementia is increasing worldwide due to the ageing global population, making the condition one of the most common reasons for needing healthcare services (World Health Organization, 2021). This increase, combined with political discussions on the sustainability of financing healthcare services in the face of rapidly growing demand, has led to the general strategy for dementia care policy to provide home-based care in municipalities (Alzheimer’s Disease International, 2015; World Health Organization, 2017).

Home-based care forms part of a comprehensive social infrastructure of statutory healthcare services provided by local authorities (Vabø et al., 2013). All Norwegian residents are entitled to home-based care services based on equal access for all inhabitants, regardless of social or economic status, gender, age, ethnicity, and place of residence (Ministry of Health and Care Services, 2018, 2020). Furthermore, Norwegian municipalities also have a statutory responsibility to support caregivers in particularly challenging situations (Health and Care Services Act, 2011). This responsibility is in line with international dementia policies emphasising the inclusion of family caregivers’ rights to the service and to receive individualised support and assistance (Alzheimer Europe, 2021; World Health Organization, 2017). In this sense, home-based care is crucial in facilitating individual needs among family caregivers of people living with dementia (Ministry of Health and Care Services, 2020).

Minority ethnic groups, often defined as groups with ethnic, cultural, religious or linguistic characteristics that differ from the majority population (International Organization for Migration, 2019), have in recent years become an area of increasing interest in dementia research (Berdai Chaouni & De Donder, 2019; Berdai Chaouni et al., 2020; Claeys et al., 2022; Parveen et al., 2017; Sagbakken, Spilker, & Ingebretsen, 2018). In Norway, there are approximately 1,025,000 immigrants and Norwegian-born children to immigrants, constituting 18.9% of the total population (Statistics Norway, 2022a). While very few immigrants are among the oldest in Norway today, estimates indicate that one in four people over 70 will have a minority ethnic background by 2060 (Leknes et al., 2018). The five largest immigrant groups in the country are made up of immigrants from Poland, Lithuania, Sweden, Syria and Somalia (Statistics Norway, 2022b); however, immigrants living in Norway for over 20 years largely hail from Pakistan, Vietnam, Iran, Iraq, Eritrea and Ethiopia (Sagbakken, Spilker, & Nielsen, 2018). Regarding terminology, we use ‘minority ethnic backgrounds’ to refer to Norwegian residents with an immigrant background and those born to immigrant parents (Ingebretsen, 2011). However, it is important to note that this study aligns with the assumption that social categories such as ethnicity are not unidimensional but constitute multiple, interdependent and intersecting social identities (Bowleg, 2012).

Current studies continue to raise concerns about healthcare service use, stating that many family caregivers do not perceive such services as culturally sensitive or sufficiently adapted to their needs (Czapka & Sagbakken, 2020; Kenning et al., 2017; Lillekroken et al., 2021; Nielsen et al., 2021; Parveen et al., 2017; Sagbakken, Spilker, & Ingebretsen, 2018). Subsequently, several studies underline the need to merge unique and diverse forms of relationships between family caregivers from minority ethnic backgrounds and healthcare personnel to enhance service use and further engage family caregivers in the service (Czapka & Sagbakken, 2020; Nielsen et al., 2021; Sagbakken, Spilker, & Ingebretsen, 2018; Van Wezel et al., 2016). Ethnospecific care, or care provision that is based on cultural and ethnic backgrounds, is believed to enhance the use of healthcare services among people with dementia and their families (Brijnath et al., 2022). However, given the variations in reasons for immigration, cultural, ethnic and socioeconomic status, education and length of stay, minority ethnic groups are diverse and heterogeneous (Debesay et al., 2019). Consequently, studies argue that overemphasising ethnicity and culture might simplify the understanding of care practices among families from minority ethnic backgrounds (Ahmad et al., 2022; Baghirathan et al., 2020; Sagbakken et al., 2020).

A recently published Belgian study examining dementia care for minority ethnic groups revealed several obstacles to receiving healthcare services at the structural healthcare system level (Claeys et al., 2022). Furthermore, a study conducted in Norway suggested that a lower degree of service use among families from minority ethnic backgrounds may be due to inadequate care provision and caution against assuming that the decision to use less healthcare services is always rooted in cultural norms and traditions (Moholt et al., 2020). In their study, Claeys et al. (2022) demonstrated how austerity measures, such as economic restrictions, staff shortage and limited time, are major restraining factors to the adoption of healthcare services and receiving appropriate care services among all family caregivers, irrespective of ethnicity. These concerns might also apply to the Norwegian context. Due to an increasing number of various and more complex healthcare tasks that have been carried out in the municipalities in recent years (Vabø et al., 2013), researchers in Norway have raised concerns about a lack of individual and relational work in home-based care (Fjørtoft et al., 2020; Hoel et al., 2021; Strandås et al., 2019). However, research exploring these issues concerning minority ethnic populations in Norway is still scarce.

Defined as the interplay between individuals and the social environment, social adjustment refers to specific ways of behaving, often called ‘role performances’, that conform to societal norms (Weissman, 1975). In this sense, we assume that behaviours among family caregivers from minority ethnic backgrounds when being engaged in home-based care are influenced by the social norms existing in the service and the different ways of identifying oneself as a family caregiver in Norwegian society. Thus, an exploration of social adjustment to home-based care is essential to understanding how decisions about receiving and the ways of being engaged in home-based care diverge among family caregivers from minority ethnic backgrounds. Furthermore, this can help demonstrate restraining factors at the organisational level of home-based care and challenge existing public discourses in which ethnicity and culture are perceived as essential barriers to service use.

Theoretical framework

Our theoretical point of departure lies in the works of the French sociologist and philosopher Pierre Bourdieu (1977, 1992) and his analytical concepts of field, habitus and capital. Bourdieu constructed these concepts to explore how and why people act as they do in specific social contexts (Bourdieu & Wacquant, 1992). Central to his perspective is that everyday experiences are used to reveal how complex social structures shape values, beliefs and behaviours. In this way, the concepts of field, habitus and capital are suited to explore everyday life among family caregivers from minority ethnic backgrounds who have relatives with dementia in the context of home-based care.

According to Bourdieu (1992), a field is understood as a social space in which power relations determine specific rules that define both the restrictions and possibilities of actions (Nairn & Pinnock, 2017; Segre, 2014). Therefore, in this study, we particularly focus on how home-based care as a social context influences family caregivers’ behaviours and possibilities of actions. Bourdieu (1979) argued that no visible executive power drives actions amongst individuals; instead, habitus gives individuals a sense of appropriate behaviour according to the rules of the field (Bourdieu, 1977). Habitus can therefore be understood as a set of inherent dispositions that guide individuals toward certain actions (Segre, 2014). Although the home-based care field determines the social rules in which family caregivers find themselves, Bourdieu (1979) did not perceive individuals and their activities as a passive reflex of a field. In this sense, even though the field of home-based care influences family caregivers, this does not mean that actions and behaviours are always identical. For instance, different forms of habitus can manifest themselves in various ways of conceptualising oneself as a family caregiver, which gives rise to exploring how ways of socially adjusting to home-based care might differ across different caregivers.

Furthermore, Bourdieu (1992) argued that social activity, which in this study comprises family caregivers’ decisions about receiving home-based care and how they socially adjust to the service, is also influenced by various forms of capital (Rhynas, 2005). Capital represents social power that can be exchanged and used, indicating that some individuals have specific advantages over others (Rhynas, 2005; Segre, 2014). Capital involves apparent economic capital, but perhaps more importantly, the possession of different social resources (Crossley, 2008). In this way, capital is significant because it holds the initial concepts of field and habitus together (Nairn & Pinnock, 2017)—although some family caregivers’ habitus guides them towards similar actions that they perceive as preferable, they might not have the same repertoire of possibilities due to their disposable capital.

Bourdieu’s theoretical framework cannot be prescriptive of alternatives; however, it can offer ideas and different ways of thinking about various phenomena. In this way, Bourdieu’s theory has much to offer in a healthcare research context. For example, the intertwined concepts of field, habitus and capital can demonstrate how social rules and norms in home-based care might shape experiences and actions among family caregivers from minority ethnic backgrounds. Furthermore, the concepts of habitus and capital can demonstrate intertwined social dynamics, which give rise to variations in how family caregivers from minority ethnic backgrounds socially adjust to home-based care. In this way, the concepts provide a means of interpreting empirical data more theoretically and sophisticatedly (Nairn & Pinnock, 2017), contributing to understanding how dynamic relations on multiple social levels influence family caregivers’ reception of home-based care and social adjustment to the service.

Aim and research question

When studying dementia and family caregivers in minority ethnic populations, research approaches guided by Bourdieu’s theoretical thoughts are scarce. To date, little is known about the processes of social adjustment to home-based care among family caregivers from minority ethnic backgrounds. The current study, therefore, aims to contribute novel knowledge to this field of practice and enhance the understanding of how social and dynamic relations give rise to various actions among family caregivers from minority ethnic backgrounds. To address the aim of the study, we developed the following research questions: How do family caregivers from minority ethnic backgrounds who have relatives living with dementia justify decisions regarding home-based care, and how do they describe their behaviours when interacting with healthcare personnel?

Methodology

This study is part of a larger research project that explores the perceptions of social interactions between family caregivers from minority ethnic backgrounds and healthcare personnel in Norwegian dementia care.

Study design

The current study is based on qualitative interviews in which family caregivers from different minority ethnic backgrounds who have relatives with dementia contributed their thoughts and experiences with home-based care services. We further applied a qualitative research approach inspired by Pierre Bourdieu (1977, 1979, 1992) to garner deeper theoretical insight into how family caregivers from minority ethnic backgrounds justified their decisions about receiving home-based care, thus shedding light on the various ways of socially adjusting to the service.

Recruitment procedure and participants

We performed purposeful sampling with the inclusion criteria of having a relative living with dementia and willingness to share their experiences and perceptions of home-based care services. Participants were recruited through dementia coordinators and various home-based care service agencies. Due to an initial lack of response, recruitment was also sought from one hospital-based memory clinic and various organisations and cultural forums, such as the Red Cross, mosques and meeting arenas for women from minority ethnic backgrounds. Some participants were also recruited using the snowball sampling method (Noy, 2008). Because a large proportion of previous research on dementia and minority ethnic groups is based on convenience and ethnic-specific samples (Torres, 2019), we sought to include a group of respondents representing a variety of minority ethnic backgrounds, familial affiliations, ages and professions.

Nine participants from six different municipalities in eastern Norway agreed to share their experiences. Four participants were Norwegians born to immigrant parents, and five participants were born in countries outside Norway (Table 1). The ages of the five women and four men who participated ranged from 31 to 80 years. Five family caregivers lived in the same household as the person with dementia, and four lived separately but within the same municipality or nearby. All the participants spoke and understood Norwegian, and no interpreter was used during the interviews.

Table 1.

The participants.

Pseudonyms	Age	Gender	Born and raised in	Family affiliation	Relative with dementia (Born and raised in)	Distance to relative with dementia
Jibran	30+	Male	Norway	Son	Father (South Asia)	Shared home
Ivana	70+	Female	Central Europe	Spouse	Husband (The Nordic Region)	Shared home
Jaanika	50+	Female	Southeast Europe	Daughter-in-law	Mother-in-law (Southeast Europe)	Shared home
Lành	30+	Male	Norway	Son	Father (Southeast Asia)	10 min by car
Goran	80+	Male	Southeast Europe	Spouse	Wife (Southeast Europe)	Shared home until 1 year before death
Aaliyah	40+	Female	Born in Northeast Africa, raised in Norway	Daughter	Mother (Northeast Africa)	20 min by car
Namira	30+	Female	Norway	Daughter	Father (North Africa)	10 min by car
Haseeb	30+	Male	Norway	Son	Father (South Asia)	Shared home
Parvanah	40+	Female	Western Asia	Daughter	Father (Western Asia)	10 min by car

Data collection

The first author conducted all the interviews from January 2020 to June 2021. The participants were contacted via e-mail or telephone for interview scheduling. The participants received information about the study in advance and selected a location of their choice, including libraries, cafés, workplaces and homes, to conduct the interview. During the interviews, a semi-structured guide was used that included questions about the family caregivers’ experiences of having a relative living with dementia, their perceptions of and experiences with home-based care services, and their thoughts on future prospects (Supplementary Appendix 1). Additional follow-up questions were asked during the interviews, which lasted between 44 and 92 min. All interviews were audiotaped and consecutively transcribed verbatim by the first author, approximately 189 pages (1.5 line spacing) were generated for interpretation.

Data analysis strategy

The data analysis consisted of a thematic analysis (Braun & Clarke, 2019) theoretically inspired by the analytical concepts of habitus, capital and field (Bourdieu, 1977, 1992). First, audio recordings were listened to multiple times, transcripts read and reread, and immediate thoughts and ideas were noted to gain a thorough overview of the empirical material. Statements dealing with participants’ experiences of being a family caregiver, their decisions about receiving home-based care and their experiences with home-based care were highlighted and formed the basis of the coding process. Then, following the theoretical concepts of habitus, capital and field, we posed three analytical questions directed to the empirical data on how the family caregivers (i) described their current situation as family caregivers of relatives with dementia in the context of home-based care, (ii) clarified acceptable and non-acceptable behaviour of individuals (including themselves) in the context of home-based care and (iii) elucidated how certain decisions about receiving home-based care were made and others were not. These analytical questions aided the construction of theoretically driven codes related to the concepts of habitus, capital and field.

Repeated patterns and conflicting ideas constituted essential aspects of the analysis; we specifically looked for differences in how the interviewees justified decisions about receiving home-based care and how they described their behaviours when interacting with healthcare personnel. Codes were then organised into potential themes and discussed within the research team in accordance with the study’s research question and aim, resulting in the construction of two interrelated main themes. For transparency, the themes were presented separately, with subthemes supported by excerpts from the data. Since the interviews and transcripts were conducted in Norwegian, all quotes were translated into English. Table 2 shows an example of the analysis process used to strengthen reliability and validity.

Table 2.

Example of the analysis.

Key phrases (quotes)	Codes close to the text	Theoretically inspired codes	Subthemes	Main theme
In the end, I couldn’t take any more of this nonsense—all that fuss. I was so incredibly sick and tired, like, ‘I can’t stand this service anymore’, so we just cancelled it. (Jibran, son) I think I’m providing better care, since I’m his son. For example, Dad has stiff joints. I don’t think anyone in home-based care would have bothered to stretch and bend his legs daily. […] Maybe some of the healthcare personnel would do it, but not all of them. (Haseeb, son)	Dissatisfied with both incompetence exhibited by professionals and individual facilitation	Have opportunities to cancel the service due to dissatisfaction (capital) Avoid judgements by leaving the service quietly (habitus)	Cancelling the service; blaming but not complaining	Subtle ways of not making a fuss when interacting with home-based care
They never talked to me much. They just came, looked at the clock—‘finished’—and then left. But the thing is, I also needed help—perhaps more than my wife. She was the one who was sick, but she never got much help from them because I helped her with everything. (Goran, husband) It was not possible for home-based care to show up when my wife needed help. I tried to call, but it was difficult for them. It was difficult to adapt to our needs. (Goran, spouse) No complaints. You just have to make everyday life cohesive, although it has been a little difficult dealing with the fact that so many different people are coming here. In that sense, they don’t necessarily get any continuity in their work. (Lành, son)	Dissatisfied with the disorganised service provision and lack of attention towards family caregivers	Continue receiving the service without revealing dissatisfaction (habitus) Avoid judgements by accepting the service provided (habitus)	Continuing the service without blaming or complaining
When you come to Norway, you must at least try to adapt. […] We don’t sit and think in retrospect: ‘Oh, maybe it could have been better; I miss this, I miss that’. You’re not privileged enough to think like that. (Lành, son) I know it’s like a saying, or an assumption, that immigrant families interfere a lot with home-based care—constantly interrupting and making the staff do things. […] I understand they assumed we were like that, but as I said, luckily, my family is different. (Jibran, son) This power dynamic makes people not want to stand out—because when you do, it automatically creates this division. […] How the conversation between staff develops is a whole chapter in itself. You and I both know that. That’s why I said they might use the term ‘witch’ for relatives who are demanding. (Ivana, wife)	Some behaviours are more acceptable than others	Avoid judgements by behaving as those that do not complain, demand or interfere (habitus)	Efforts to avoid standing out in the crowd

Ethical approval

The study received approval from the Norwegian Centre for Research Data (registration no. 153884, approved on 25 November 2019). All participants received both oral and written information about the study, and informed written consent was obtained prior to the interviews. Sharing experiences of having a relative living with dementia involves sharing names, places and other information that can be used for identification. Therefore, the participants were given pseudonyms, and their own or their relative’s country of origin was generalised to the part of the world referred to. Quotes were also edited to protect the anonymity of the participants and others who appeared in the stories.

Findings

The two constructed main themes, ‘subtle ways of not making a fuss when interacting with home-based care’ and ‘distinctions in care responsibilities’, revealed both variations in family caregivers’ perceptions about using home-based care and their ways of socially adjusting to the service. Experiences of interacting with healthcare personnel were more closely related to the organisational limitations in the service. Furthermore, justification for receiving or declining the service was influenced by dissatisfaction with the service, but also by social support from other relatives and friends and the priority given to one’s personal and work life.

Subtle ways of not making a fuss when interacting with home-based care

Due to the different needs of relatives living with dementia, only six participants had current or previous experiences with home-based care. However, all participants articulated what home-based care practices should be like, specifically focusing on interactions between themselves and healthcare personnel.

Cancelling the service; blaming but not complaining

A good and solid relationship with healthcare personnel was of utmost importance to the participants; however, developing and maintaining this relationship was a major challenge. The participants emphasised concerns about efficiency in the home-based care service, and many felt that healthcare personnel did not meet their expectations due to time constraints. For example, participants shared details about the lack of flexibility in visiting times and the lack of individual facilitation. Some also described a lack of engagement and even courtesy among healthcare personnel. For instance, Jibran explained that he had to cancel the service offered to his father to restore a sense of harmony in their home.

In the end, I couldn’t take any more of this nonsense—all that fuss. I was so incredibly sick and tired, like, ‘I can’t stand this service anymore’, so we just cancelled it. (Jibran, son)

Another participant, Haseeb, described the short period when his father received home-based care as exhausting; the visiting healthcare personnel were constantly replaced and thus provided no continuity. In addition, the service offered was inconsistent and could not match the care he provided to his father.

I think I’m providing better care, since I’m his son. For example, Dad has stiff joints. I don’t think anyone in home-based care would have bothered to stretch and bend his legs daily. […] Maybe some of the healthcare personnel would do it, but not all of them. (Haseeb, son)

Jibran and Haseeb cancelled the service after a short time and concluded that they could provide care in a much more reliable and organised way than home-based care providers. Although they both expressed clear annoyance during the interviews, none of them had filed complaints or expressed their reason for cancelling the service. As Haseeb explained, the services’ organisation prohibited individual facilitation. Thus, complaining would make no difference and was not deemed necessary.

Continuing the service without blaming or complaining

Goran was one of those who continued to receive home-based care despite dissatisfaction and a problematic relationship with the service. Healthcare personnel in home-based care visited Goran and his wife for many years, but, as he explained, the lack of flexibility and individual facilitation remained a problem. He wanted the healthcare personnel in home-based care to alleviate his life situation by helping his wife with her personal hygiene needs and, perhaps more importantly, by taking the time to talk to him, but he expressed disappointment that they never did.

They never talked to me much. They just came, looked at the clock—‘finished’—and then left. But the thing is, I also needed help—perhaps more than my wife. She was the one who was sick, but she never got much help from them because I helped her with everything. (Goran, husband)

Despite these experiences, Goran sometimes sympathised with the healthcare personnel and found that they were not to blame. Even though the service failed to facilitate him and his wife, he never blamed the healthcare personnel, stating that his wife’s needs were too comprehensive to be met.

It was not possible for home-based care to show up when my wife needed help. I tried to call, but it was difficult for them. It was difficult to adapt to our needs. (Goran, husband)

Other participants also tended not to blame the healthcare personnel or complain about the service provided. For example, Lành explained how the initial phase of home-based care his father received was unreliable and disorganised. Nevertheless, while it was frustrating that the healthcare personnel responsible for providing the care were not in control, complaining was not an alternative.

No complaints. You just have to make everyday life cohesive, although it has been a little difficult to deal with so many different people coming here. In that sense, they don’t necessarily get any continuity in their work. (Lành, son)

Efforts to avoid standing out in the crowd

Although Lành articulated concerns about home-based care as a service that was disorganised, he also emphasised that he and his family were not the kinds of people who complained; rather, they adapted to the Norwegian system. In this sense, he brought the concept of ethnicity into his accounts of how to behave as a family caregiver in home-based care.

When you come to Norway, you must at least try to adapt. […] We don’t sit and think in retrospect: ‘Oh, maybe it could have been better; I miss this, I miss that’. You’re not privileged enough to think like that. (Lành, son)

Jibran also expressed thoughts about how the healthcare personnel perceived his family. Before Jibran cancelled the service, he and his mother had agreed that when healthcare personnel were there to help his father, neither he nor she should interfere. As he put it, they behaved appropriately, unlike many other families from minority ethnic backgrounds.

I know it’s like a saying, or an assumption, that immigrant families interfere a lot with home-based care—constantly interrupting and making the staff do things. […] I understand they assumed we were like that, but as I said, luckily, my family is different. (Jibran, son)

Ivana followed up on this by sharing her thoughts on how the social dynamic between healthcare personnel in the municipalities and family caregivers might change if relatives dared to speak their minds.

This power dynamic makes people not want to stand out—because when you do, it automatically creates this division. […] How the conversation between staff develops is a whole chapter in itself. You and I both know that. That’s why I said they might use the term ‘witch’ for relatives who are demanding. (Ivana, wife)

Distinctions in care responsibilities

All participants felt responsible for the well-being of their relatives living with dementia. However, while some considered their responsibilities to be more closely related to facilitation, such as contacting and arranging home-based care services, others saw it as their duty to take full responsibility for caring for their relatives.

Care responsibility versus other commitments

Concerns about care responsibilities often arose concerning participants’ work and private lives. For a period, Namira took on much responsibility due to temporary leave from her work related to the COVID-19 pandemic. After returning to work, she felt that meeting her father’s needs took up too much of her free time. She was, therefore, very optimistic about the idea of receiving home-based care.

To put it that way, it comes at the expense of my social life. It’s like my life is all about work and my dad—nothing else. And maybe that’s why I see the need to set some boundaries for myself. It’s not like I’m not going to help him, but I think it’s good that others come by to see him as well. (Namira, daughter)

Although Namira did not yet have any experience with home-based care, she was convinced that the service would better meet her father’s needs than she could. It would also help her balance her work, her private life and her father’s needs. Other participants identified the same issue. Jaanika, who shared responsibility for her mother-in-law with her husband, stated that it was impossible to continue providing care as her mother-in-law’s condition deteriorated. Like Namira, Jaanika was concerned with work commitments and articulated that her mother-in-law would receive appropriate care from home-based services when the time was right. She also stated that there was no taboo associated with asking for help and that she had no second thoughts about it.

You can’t just leave an elderly woman home alone when you’re at work. You just can’t do that. It’s not a very compassionate thing to do. […] There’s no reason to feel like, ‘Oh no, we can’t ask for help.’ Fortunately, when you need help, you get the help you need from the municipality. (Jaanika, daughter-in-law)

Parvanah had similar thoughts regarding her father, but struggled to convince her mother, who had a completely different mindset. According to Parvanah, people in her culture, including her mother, had an old-fashioned way of thinking about healthcare services in municipalities.

She has that kind of mentality, you see. However, I know that there is help for us out there. It’s even okay to be in an institution, if necessary. But she has this idea that she’s supposed to do it all herself. (Parvanah, daughter)

Social resources: Bridging responsibilities and work commitments

Several participants had significant concerns about the ability of healthcare personnel to care for their relatives and perceived their current and future responsibilities as all-encompassing. This was especially apparent among those who had previous experiences with home-based care. As explained by Haseeb, caring for his father had required him to restructure his work and personal life in recent years, which he did not see as problematic because he was financially secure and received support from his wife and siblings. Several other participants also emphasised the invaluable help and support they received from their families and friends when taking on full responsibility for their relatives living with dementia. In addition to support from his family, Haseeb had deliberately chosen a career that he knew would give him the freedom to look after his parents when they got old and needed his help.

From day one, I have worked my way up and prepared for the day I would need to be at home to look after my parents. (Haseeb, son)

Aaliyah was reluctant to allow her mother to receive home-based care. However, since she received little support from her siblings and struggled financially, she realised that she might need some help, after all, due to work commitments.

I may eventually need some help from home-based care because I’m at work during the daytime. Our society is built that way, you know. I have to work. (Aaliyah, daughter)

Similarly, Parvanah described her situation as enormously difficult, especially due to her sense of loneliness, since her siblings had settled down in other European countries. A situation in which her mother took on full responsibility for Parvanah’s father was perceived as a major concern, especially related to Parvanah’s thoughts: What if something happened to her mother? Her work commitments and lack of close family made these potential threats daunting.

It’s terrifying when I think about it. […] I work full-time, as do my husband and kids, right? And I can’t ask them for help. I’m the only one here to help them, and that is why I find it intimidating. What am I supposed to do? (Parvanah, daughter)

Discussion

In this study, we have explored social adjustment to home-based care among family caregivers from minority ethnic backgrounds through the lens of Pierre Bourdieu’s theory. By using the concepts of field, habitus and capital (Bourdieu, 1977, 1992), our findings demonstrate how several constraints in home-based care at an organisational level influenced the family caregivers’ ways of being engaged in the service. Thus, this study contributes to the sparse literature on this topic, indicating a surprising knowledge gap given the Norwegian political focus on developing high-quality healthcare services for home-dwelling people living with dementia and their family caregivers, regardless of ethnicity.

Home-based care as a social field

Even though global dementia policies continue to emphasise individual facilitation for all family caregivers as a highly valued care aspect (Alzheimer Europe, 2018; World Health Organization, 2017), our findings indicate that such facilitation might not always be available in Norwegian home-based care. By discussing the concept of field to explore home-based care as a social setting with its structures, rules and forms of authority, our study demonstrates that organisational limitations in home-based care influenced family caregivers’ actions concerning whether to receive the service or not.

Research suggests that developing culturally sensitive practices is necessary to meet the needs of family caregivers from minority ethnic backgrounds (La Fontaine et al., 2007; Stenberg & Hjelm, 2022). However, as our findings show, the family caregivers participating in this study were not primarily concerned about culturally insensitive practices. Instead, consistent with BerdaiChaouni and De Donder’s (2019) findings, our study points to how experiences of time constraints, fragmented services and lack of recognition of the family caregiver’s situation, in particular, influenced decisions about whether to continue the service. Thus, our findings may serve to counteract assumptions that the experiences of minority ethnic family caregivers are unique, different and always related to their ethnic ties (Greenwood et al., 2015).

In their systematic review, Greenwood et al. (2015) explored minority ethnic carers’ satisfaction with social care services in the community, highlighting that many barriers identified were potentially relevant to all carers, irrespective of ethnicity. Our findings show similarities and reveal that many family caregivers’ concerns were linked to home-based care as a service with generally poor quality and a lack of individually tailored care provision. By revealing how practical procedures in home-based care pay little attention to the more humane aspects of social interactions, this paper points to how dimensions of day-to-day life in home-based care services can make the ideal of individual facilitation challenging to achieve (Debesay et al., 2014). This demonstrates tensions between several family caregivers’ ideals of care practices and the organisational limitations of home-based care service, which eventually resulted in some caregivers cancelling the service.

Following the rules of the field

Our findings align with depictions of home-based care as being closely related to a neoliberal ideology in which timesaving and efficiency are values that are highly integrated into the service (Debesay et al., 2014; Fjørtoft et al., 2020; Vabø, 2012). However, an interesting finding was that, although many of the family caregivers expressed dissatisfaction with the service, their behaviours were, to a high degree, linked to how they could be perceived by the healthcare personnel, guiding them not to make a fuss. Following Bourdieu’s analytical lens, this can be understood as how the field of home-based care influenced family caregivers to behave and act in specific ways (Bourdieu, 1977). For instance, the family caregivers seemed to be well aware of how efficiency and time constraints in home-based care affected healthcare personnel; in this sense, their habitus guided them to socially adjust in a way that was not perceived as inappropriate. In line with this, the idea that complaining would not improve the service was consistently observed. This behaviour would only reinforce the imbalance in the power relations between caregivers and healthcare personnel.

Another aspect of behaving in an appropriate way was by some associated with the concept of ethnicity. Studies argue that standardisation and efficiency may reinforce negative conceptualisations and lead to the construction of minority ethnic groups as troublesome (Berdai Chaouni et al., 2020; Debesay et al., 2014; Gulestø et al., 2021). Our study corroborates these findings and demonstrates how not interfering healthcare personnel from home-based care became important, as this was a typical behaviour among other families from minority ethnic backgrounds. These findings can also relate to another recent study, which explored older Pakistani women’s healthcare encounters in Norway and illustrated how the negative conceptualisation of minority ethnic groups influenced these women’s behaviours (Arora et al., 2019). In their study, Arora et al. (2019) found that the participants chose de-stigmatising strategies when facing stigmatisation in healthcare encounters. Combined with our findings, this raises significant ethical concerns in that the negative notion of ethnicity in public discourses makes its way into healthcare settings and might influence behaviours among family caregivers from minority ethnic backgrounds.

Capital and habitus give rise to various actions

Our findings indicate that it was not solely the rules in home-based care that inclined caregivers’ actions; it became apparent that other surrounding social environments also influenced the family caregivers’ mindsets about what constitutes their care responsibilities and their abilities to fulfil them. In line with previous research (Arora et al., 2020; Sagbakken, Spilker, & Ingebretsen, 2018), we found that expectations of providing care for a relative with dementia were sometimes hard to reconcile with daily life. Social resources, such as having support from family and friends and the ability to maintain an income, can be understood as what Bourdieu denotes as capital (Rhynas, 2005; Segre, 2014).

Our findings suggest that social resources are essential when exploring family caregivers’ decisions about receiving home-based care. Some perceived home-based care as a preferable solution, making it possible for them to prioritise their social lives while still being confident that their relatives were taken care of. However, this was not relevant for everyone, indicating diversity among the family caregivers. For instance, we found significant concerns about the service, especially among those with home-based care experiences, which guided them towards not wanting the service. Previous research confirmed these actions (Lillekroken et al., 2021; Nielsen et al., 2021; Sagbakken et al., 2018); however, only a few caregivers could rely on their connection to the broader family; several faced concerns about juggling care tasks and other commitments. In this sense, although different mindsets and experiences resulted in various usages of home-based care, our findings point to how actions were linked mainly to the family caregivers’ social networks and concerns about financial security.

Previous research has emphasised that family care is often perceived as superior to professional care and more satisfying, even if it imposes a heavy burden in minority ethnic groups (Mukadam, Cooper, Basit, et al., 2011; Mukadam et al., 2011; Van Wezel et al., 2016). In contrast, our findings paint a somewhat nuanced picture. Many family caregivers articulated that taking full responsibility for care was perceived as an obstacle that might prevent them from keeping up with their daily life (mainly work commitments) and their social ties to friends and society at large. As some stated, society was not built in a way that facilitated family care, and not keeping up with work would put them at risk of becoming outsiders—a fear several participants articulated. Furthermore, when analysed through the concept of capital, we discovered that those family caregivers’ who could choose to provide care independently justified these actions by emphasising that they could simultaneously maintain an income and contribute to society as good citizens. Thus, our findings show that although different perceptions about service usage among family caregivers can be linked to their cultural views and understandings, there are connections to societal expectations and duties in Norwegian society that influence their decisions about service usage.

Limitations and further research

This study has several limitations. First, although the choice of Bourdieu as a theoretical framework and analytical lens has helped minimise the influence of the authors’ preunderstandings, a different methodological position could generate other findings. Furthermore, this study does not intend to provide any generalisations of the findings or thorough explanations of the complex power relations in home-based care. Still, the findings add nuance to the body of work on the social process of adjustment to home-based care among family caregivers from minority ethnic backgrounds, which can be seen as a strength. Another weakness is that the study is based on how family caregivers articulated their perceptions of actions and interactions in home-based care. Thus, the findings do not address how this occurs in day-to-day interactions in home-based care. In addition, not all participants had experience with home-based care provision, meaning that their perceptions of the services were not based on personal experience. Although this is a significant limitation, it also adds to the research literature on how home-based care among family caregivers from minority ethnic backgrounds is perceived by caregivers before they become engaged in the service.

Finally, although we sought to include a varied sample of participants representing different minority ethnic backgrounds, one weakness was that all participants spoke Norwegian. Participants without Norwegian language proficiency might have other views on home-based care, thus giving voice to other ways of socially adjusting to the service. Therefore, we call for further studies to enhance the knowledge and understanding of power relations among those positioned in the field of home-based care. This could involve family caregivers without Norwegian language proficiency, extended family members, people with dementia, healthcare personnel and managers of home-based care agencies.

Conclusions

In this study, we explore ways of socially adjusting to home-based care among family caregivers from minority ethnic backgrounds who have relatives living with dementia. By using the concepts of field, habitus and capital, we strengthen the idea that engagement in the service entails complexities at different social levels. On a micro level, our findings point to how restrictions constructed by organisational limitations influence ways of behaving when interacting with the service. Furthermore, on a broader social level, our findings counteract basic assumptions that decisions about service use among minority ethnic caregivers are always related to ethnicity or cultural ties. By specifically highlighting the aspect of social resources, we demonstrate that social advantages varied among the observed family caregivers and gave rise to different possibilities of actions. In this way, the study contributes valuable knowledge to the academic conversation about dementia healthcare services and family caregivers from minority ethnic backgrounds.

Supplemental Material

Supplemental material - Different senses of one’s place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia

Supplemental material for Different senses of one’s place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia by Ragnhild Gulestø, Daniela Lillekroken, Liv Halvorsrud and Heidi Bjørge in Dementia

Footnotes

Acknowledgements

The authors would like to thank the participants for their important contribution and to Oslo Metropolitan University for funding this study.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by Department of Nursing and Health Promotion, Faculty of Health Science, Oslo Metropolitan University.

ORCID iD

Ragnhild Gulestø

Supplemental material

Supplemental material for this article is available online.

Ragnhild Gulestø (RN, MHSc) is a PhD candidate at Oslo Metropolitan University, Faculty of Health Sciences, Department of Nursing and Health Promotion. Gulestø is a member of the interdisciplinary research group Ageing, Health and Welfare. Her research interest is in municipal healthcare services, which includes keywords such as critical thinking, sociology, family caregiving, multi-ethnic perspectives and collaborative relations.

Daniela Lillekroken (RN, MCNSc, PhD) is an Associate Professor at Oslo Metropolitan University, Faculty of Health Sciences, Department of Nursing and Health Promotion. Her clinical experience is from municipal healthcare services, particularly dementia care. Her research focus is on improving the quality of healthcare services provided to people with dementia and their family members.

Liv Halvorsrud (RN, Cand.san, PhD) is a Professor at Oslo Metropolitan University, Faculty of Health Science, Department of Nursing and Health Promotion, and at University College of Østfold, Department of Nursing and Welfare. Her research focus includes quality of life, nursing, digital assisted technology, community healthcare, dementia, person-centred care, minority health and family caregivers. Halvorsrud is a teacher and supervisor in bachelor, master, and PhD programmes.

Heidi Bjørge (RN, Cand.san, PhD) is an Associate Professor at Oslo Metropolitan University, Faculty of Health Sciences, Department of Nursing and Health Promotion. Her clinical experience is mainly from mental healthcare services. Her research focus is on relatives of persons with dementia and psychosis, particularly on relationship quality within families, quality of life, nursing, and minority health. In addition, Bjørge is a teacher and supervisor in bachelor, master, and PhD programmes.

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