Family's role in long‐term care—A qualitative study of Finnish family members' experiences on supporting the functional ability of an older relative

Abstract Family members are important providers of care for older people. In residential long‐term care, however, their role is not always simple and straightforward: responsibility for care provision rests officially with staff members, but in practice family members often contribute to providing care. The main reason for admission to long‐term care is functional decline. At the same time, the maintenance of functional ability is a central goal in long‐term care. It is therefore reasonable to assume that functional ability is also an important factor in the relationship between family members and long‐term care residents. This study aims to explore how family members experience their role in supporting the functional ability of older relatives in residential long‐term care. With the approval of the local hospital district's ethics committee, we conducted semi‐structured interviews with family members (n = 16) in Finland in 2016. Thematic data analysis showed that family members supported the functional ability of their older parent or spouse by organising and monitoring care and by bringing forth their relative's personal needs and wishes. They often saw their role alongside staff members as ambiguous, and their understanding of the scope of support for functioning extended beyond physical everyday tasks. In their talk, family members broadened the concept of functional ability from daily chores and independence to meaningful social relations and acknowledgement of person's individual background and preferences. Family members’ views offer valuable insights into residents’ personal needs, values and preferences and in doing so help care workers to support their functional ability with a person‐centred care approach.

and friends are expected to assume responsibility for care and support formal care services (Ahosola, 2018;Kalliomaa-Puha, 2017;Szebehely & Meagher, 2018). The family's caregiving role is often ambivalent (Pillemer et al., 2019), particularly when their older relative lives in long-term care. While responsibility for care provision officially rests with the formal care system, family members are expected to contribute as well (Milligan, 2009).
Supporting functioning of older people is recognised as one of the main roles of care professionals, (Ministry of Social Affairs & Health, 2018;Vähäkangas et al., 2006) but there are different understandings of how they should go about providing rehabilitative care. For instance, it can be aimed at motivating and encouraging older individuals to perform given tasks as independently as possible Hjelle et al., 2017;Resnick et al., 2013Resnick et al., , 2014 or completing everyday chores together with the resident (Ministry of Social Affairs & Health, 2018). However, functional ability is an ambiguous term. In World Report on Ageing and Health the World Health Organization defines functional ability as 'the health-related attributes that enable people to be and to do what they have reason to value' (WHO, 2015:28). Functional ability can be viewed as comprising of intrinsic capacity, the environment in its broad meaning and the interaction between individual and the environment (WHO, 2002(WHO, , 2015. Ageing studies often measure functioning by independence in activities of daily living (ADL) (Chatterji et al., 2015;Corneliusson et al., 2019;Palese et al., 2016). These activities include, for instance bathing, eating and toileting. (Katz et al., 1970) Our previous study showed that for nurses working in long-term care, functional ability has to do with independence and activities of daily living, whereas residents understand it from a broader perspective in connection with coping and the life course (Lehto et al., 2017). But it is unclear how family members understand functional ability and what role they assume in supporting it.
Many family members continue to look after and support their older relative after the transition to long-term residential care. Family members often have profound knowledge of their relatives' routines and preferences. They have an important role as guardians of the identity and dignity of their loved ones (Harnett & Jönson, 2010;Hertzberg & Ekman, 2000;Whitaker, 2009), and can ensure that their relative's previous routines and lifestyles are respected (Davies & Nolan, 2004;Eika et al., 2014;Graneheim et al., 2014;Palmer, 2013;Ryan & Mckenna, 2015). An approach that is increasingly used to answer to the diverse needs of older people with declined functional ability is the concept of person-centredness. This means that care services are delivered so that they respond to the care receivers' preferences and personal needs (WHO, 2015). By understanding and knowing the resident thoroughly, family can help to maintain their relative's personhood and support person-centred care (Kitwood, 1997). However, in long-term care family members are often regarded as outsiders rather than part of the care community. The transition from home to long-term care and the process of carving out a new role can be especially difficult when the family member's role changes from principal caregiver to that of a visitor (Crawford et al., 2015;Davies & Nolan, 2004;Graneheim et al., 2014;Ryan & Mckenna, 2015).
This study was conducted in Finland, where long-term care consists of assisted living with 24-hr care, nursing homes and long-term care wards in both hospitals and healthcare centres (Johansson, 2010). The main reason for admission to long-term care is functional decline. As home care is always the priority option, individuals entering long-term care usually have several functional limitations. More than half of the long-term care residents have been diagnosed with memory disorder (National Institute for Health & Welfare, 2021). Maintaining and improving functioning and a rehabilitative approach in care are among the fundamental principles of official care policies, including long-term care (Ministry of Social Affairs & Health, 2018). The aim of this study was to explore the role of family members in long-term care, and in particular, their ways to support the functional ability of their older relatives.

| ME THODS
This study is part of a research project aimed at finding out how functional ability and rehabilitation are understood in residential long-term care. The study protocol was approved by the ethics committee of the local hospital district. The data analysed in this study comprise interviews conducted with 16 family members.
Participants were recruited in two municipalities in southern Finland by means of purposive sampling. The eight care facilities included four institutional long-term care facilities, namely two nursing home wards and two long-term hospital wards, and four assisted living facilities with 24-hr care. Assisted living is usually defined as a home because residents will pay a rent and separate fees for care, medication and other additional services. Nursing homes and longterm care wards are regarded as institutional care where residents What is known about this topic?
• Family members' role in the long-term care of older people is important but ambivalent.
• Supporting and maintaining functional ability of the residents in long-term care facilities is part of good quality care.

What this paper adds?
• Family members considered their role in supporting functioning of their older relative as important.
• Family members valued that their close ones residing in long-term care facilities received support not just in the everyday physical tasks but in their social and emotional needs and maintaining one's personhood.
• The findings of this study will expand knowledge on how to support functioning of older long-term care residents.
pay a single means-tested fee. In practice, however, assisted living and institutional care address the same care needs, and care practices are rather similar. Two of the facilities were public and six were run privately, with the local authorities having outsourced their services. A more detailed description of the care facilities can be found elsewhere (Lehto et al., 2017). The original reason for choosing a mix of different facilities was to compare different service providers.
However, during the analysis we discovered that the experiences of our participants did not differ between different facilities, so they were not separated for the analysis.
The first author contacted the managers of eight care facilities, who were each asked to suggest two family members for a research interview. To be eligible for the study participants' relative had to have lived in the current facility for at least 6 months. The managers were free to choose any family member they thought was suitable for the study, because they have the best knowledge of residents' family and how to contact them.
A total of 13 women and three men were interviewed in 2016 (Table 1). The participants had their mother (n = 9), father (n = 1) or spouse (n = 6) living in the facility. The duration of stay ranged from 3 months to 11 years.
The semi-structured one-on-one interviews were carried out be- The data were analysed using thematic analysis and the first author conducted the analysis following the guidelines by Braun and Clarke (2006). The first step involved reading and rereading the interview transcripts, focusing especially on how the interviewees explicated their experiences by giving examples of events and activities in which they had been involved. These turns of talk were then coded. Next, coded accounts were collated and sorted into preliminary themes. Analysis continued as an iterative process between the data extracts, the initial themes and the whole data set. At this stage, some themes were merged and renamed while some data extracts were moved to another theme (Braun & Clarke, 2006). Our aim in defining the themes was to grasp the similarities and variation in the participants' understandings of the topic at hand. To ensure rigorous analysis all three authors discussed the coding and the themes at several stages of the process. The final results were discussed between all authors until consensus was reached.

| FINDING S
The participants interviewed were asked about their older relative's current health, functional ability and rehabilitation in long-term care.
The interviewer did not explicitly ask them to describe their earlier experiences, yet many chose to illuminate their points of view by describing various events and their experiences about care (or lack thereof), their older parent's or spouse's functional status and their previous experiences from home or from other care facilities. The themes identified in our analysis were as follows: (1) engaging in daily activities, (2) monitoring care and (3) bringing forth personal needs and wishes. Each main theme included two or three subthemes (Table 2). We illustrate the findings using excerpts from the interviews, originally in Finnish but translated here into English.

TA B L E 1 Participants in the study
All names are pseudonyms.

| Engaging in daily activities
During the interviews, participants often described what they were able to do themselves to support the functional ability of their par- Older relatives' age and illnesses were frequently mentioned in the participants' evaluations of the care that was aimed at supporting functioning. For these reasons, they felt they had to tone down their expectations. The current status and future functioning of their relative were dependent on factors over which the participants said they had no control. However, some did say they had had experiences of successful rehabilitation and on this basis thought it was indeed possible to see an improvement in functional ability.

| Bringing forth personal needs and wishes
In describing their experiences of how their relative's functional abil- The activities undertaken or enjoyed by older relatives were mentioned several times in the interviews as having a role in maintaining functional ability.
Family members specifically mentioned individuals in the care community who attended to residents' personal needs. These kinds of relationships were considered particularly important. The primary nurse was often mentioned in this context, but in one instance reference was also made to a cleaner who regularly talked with one participant's mother. As far as family members were concerned, only few staff members emphasised the personal preferences of their loved one. However, the best way to meet residents' personal needs, they felt, was in co-operation with staff: They've made an effort to find out what my mother likes, the primary nurse here. I mean there was once a note on the door which said 'I like beautiful clothes' and again they'd left me a note asking if I wanted to wash the dress myself. And they lacquer her nails and they, I've asked them to always put in her hair rollers. In several interviews, family members described themselves as sources of emotional support. This was accepted as part of their role as a family member. However, sometimes our participants portrayed their support as a matter of necessity: My understanding is that rehabilitation is something Kaarina implies that rehabilitation should include emotional support, and that currently that support only comes from the family. While some accepted this role, many suggested that care staff should pay more attention to providing emotional support to their relative.
Social contacts and social interaction where the persons' subjective needs and likings were taken into account were regarded by our participants as important to supporting functional ability. Family members had an important role to play in providing news and social contacts from outside the institution. They were the link between the care institution and the individual resident as part of his or her family and with his or her individual background, personality and wishes.

| DISCUSS ION
This study explored how family members support and maintain the functional ability of their older relatives in residential long-term care. Supporting functional ability is considered one of the main responsibilities of professional care staff (Ministry of Social Affairs & Health, 2018;Vähäkangas et al., 2006). However, according to the results of this study also family members were actively involved in providing care that supported the functional ability of their loved ones. They participated in physical exercise, organised and monitored care and ensured that their older relatives' social and emotional needs were met.
Long-term care is widely premised on a rehabilitative approach Resnick et al., 2013Resnick et al., , 2014Vähäkangas et al., 2006). Therefore, the views of family members on supporting functioning are likely to shed light on their role in longterm care more generally. However, the role of family members in this context and their contribution to supporting the functioning of older relatives has so far received scant attention. While the role of family members and their support in different care settings is widely acknowledged (Ågård & Lomborg, 2010;Oyesanya & Bowers, 2017), research has shown that it can be challenging for family members to find their place in the formal care environment (Crawford et al., 2015;Graneheim et al., 2014;Ryan & Mckenna, 2015). Our study showed that family members were independently Hjelle et al., 2017;Resnick et al., 2013Resnick et al., , 2014 or to complete daily chores together with them (Ministry of Social Affairs & Health, 2018). In our study, family members assumed partly different role: they also valued support for social and emotional needs (Milligan, 2009;Palmer, 2013). Our findings support, but also add to earlier studies which suggest that the family has an important role in ensuring that the resident's earlier routines and preferences are respected (Davies & Nolan, 2004;Eika et al., 2014;Graneheim et al., 2014;Ryan & Mckenna, 2015).
In doing so, family members assumed responsibility for maintaining their relative's personhood, the intrinsic uniqueness of a person that is recognised and maintained in social interaction (Buron, 2008;Kitwood, 1997;Manthorpe & Samsi, 2016). Our results show that maintaining personhood is crucial in supporting the functioning of older persons in long-term care, and that family members can help to achieve this goal by providing meaningful social contacts and informing the care staff about their relative's wishes and likings. Family members' views were consistent with a person-centred care approach that underscores the importance of considering the care recipient's personal needs and preferences (WHO, 2015).
In the context of ageing research, functional ability is often understood in terms of activities of daily living (Chatterji et al., 2015;Corneliusson et al., 2019;Palese et al., 2016). Our previous study indicated that staff members often describe functional ability as abstract domains or tasks of daily living, while older residents themselves also talked about activities that were important to their quality of life, such as painting or watching TV (Lehto et al., 2017).
The present study indicates that for the family, personal preferences, individual background and meaningful social relations are crucial elements of functional ability. The views of family members lend support to the understanding of functional ability as consisting of both individual and environmental factors, which include relationships, values and care services (WHO, 2002;WHO, 2015).
It is a matter of ongoing debate whether family members should contribute to long-term care provision or whether they are regarded merely as visitors (Crawford et al., 2015;Hertzberg & Ekman, 2000;Ryan & Mckenna, 2015). In fact, family members are important contributors to care because of their close, ongoing relationship with their loved ones. We argue that family members could be even more closely involved as partners in care so that residents' functioning can be better maintained. At the same time, this would contribute to widen the understanding of functional ability in long-term care.
The participants in this study were recruited through the care managers of the care facilities concerned. It became evident during the interviews that all the participants took an active part in care provision. Moreover, several of them indicated that they had to some extent been involved in taking care of the resident even before their placement in long-term care. It is possible that the family members the managers recommended for research interviews were particularly active visitors at the care facility and well-known by staff members-and therefore that there are other family members who are less actively involved in the care of their relative and whose experiences might well differ from those who were interviewed in this study. In addition, our study has not addressed the situation of residents who have no family members, even though, Ahosola (2018) recently pointed out that more attention should be given to the functional ability and the social and emotional needs of those residents without a family (Ahosola, 2018). However, we believe that our family members' detailed accounts of their experiences of functional ability and rehabilitation in long-term care provide important knowledge for the development of long-term care practices. The results of this study show that family members have an important role in supporting residents' functional ability in long-term care, but also in expanding the meaning of functional ability in a way that further emphasises the importance of person-centred care.

| CON CLUS IONS
Our results show that family members consider themselves to have an important role in supporting the functional ability of their older relatives living in long-term care. Their talk implies that as care homes aim to maintain the functioning of their residents, functional ability should be understood in broader terms than just daily chores and independence. Holistic support for functioning means that the person's individual background and preferences are respected and that maintaining his or her personhood is understood as an important part of maintaining functional ability. Here, family members should be seen as partners in care and given the opportunity to participate in the care of their close ones if and when they want to do that.
At the very least family members' views offer valuable insights into residents' personal needs, values and preferences and in doing so help care workers to support their functional ability with a personcentred care approach.

ACK N OWLED G EM ENTS
The study was conducted at the Centre of Excellence in Research on Ageing and Care (CoE AgeCare) with funding from the Academy of Finland (project 312311).

CO N FLI C T O F I NTE R E S T
We declare no conflict of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
Research data are not shared due to privacy and ethical restrictions.