Support towards the end of life and beyond: Non-kin care commitment for older people living alone in Austria

Abstract

Non-kin carers provide vital resources for older people living alone with increasing care needs, especially if they cannot rely on the support of family members. However, this kind of commitment presents numerous challenges throughout the care trajectory and beyond. To explore these aspects in more depth, a qualitative study was designed including a retrospective interpretation of interview data with non-kin carers (n=15) and additional in-depth interviews (n=8) with people who had cared for an older person living alone with no family nearby. Analyses of the verbatim transcriptions followed coding procedures and were supported by MaxQDA software. Our findings demonstrate that non-kin carers had to negotiate personal boundaries continuously over the end-of-life trajectory to deal with the increasing complexity of care demands and overburdening situations. Following the older person’s death, non-kin carers were involved in funeral arrangements and settled practical or legal matters when no family members were available or had little inclination to contribute. The findings highlight that non-kin carers make a great effort to safeguard the interests and needs of older people living alone, ensuring their autonomy and dignity towards the end of life and beyond. However, the burdens experienced require future research to better understand the support needs of non-kin carers providing end-of-life care for an older person living alone.

1. Introduction

Although evidence of patients’ preferences regarding place of death is unclear and conflicting (Pollock, 2015), home as the best and preferred place of death remains a central goal on the political agenda regarding end-of-life care (DGP et al. 2015). As the likelihood of living in a single household increases with age (Eurostat, 2020), as do risks of poorer health, co-morbid conditions and frailty, ageing in place potentially involves many obstacles (Rolls et al., 2011). The situation becomes particularly challenging towards the end of life as death in old age is difficult to predict and the availability of services supporting dying at home is limited (Cohen-Mansfield et al., 2018; Wolff et al., 2007).

Research shows that dying at home requires a solid care network involving professional supportive services as well as a committed person who assumes responsibility for the care process at the end of life, usually represented by a family member living in the same household (Gomes & Higginson, 2006; Rosenberg et al., 2015; Ross et al., 2002). For those living alone at the end of life who cannot rely on family support, the question arises as to who is there for them to promote successful ageing and dying at home.

Changing family structures and the increase in alternative family forms, lifestyle choices, residential mobility and shifting demographics all contribute to decreasing access to family resources for older people (Albertini & Mencarini, 2014; Himes & Reidy, 2000; Young et al., 1998). Family conflicts may also prevent older people from counting on relatives if needs be (Roberto et al., 2001). With no family members to fall back on, social contacts such as friends, neighbours or other community members become an important potential source of support (Gurny & Rieger, 2006; Mair & Carr, 2019). Due to their proximity, neighbours have long been recognized as being crucial in maintaining the independence and well-being of older people ageing in place (Nocon & Pearson, 2000; Seifert & König, 2019; Van Dijk et al., 2013). They can deal with urgent matters, monitor the situation and typically provide instrumental help such as doing the shopping and other errands (Conkova & King, 2019; Wenger, 1990). Friends providing support may live further away but are likely to consider caregiving as part of a longer exchange relationship based on issues of reciprocity (Himes & Reidy, 2000; Jocelyn Armstrong, 1991; Schobin, 2020).

Research has highlighted a variety of non-kin care relationships and blurred boundaries between neighbours and friends relating to the closeness and depth of relationships (Barker, 2002; Lapierre & Keating, 2013; Nocon & Pearson, 2000) while a recent study has provided new evidence of mutuality in caring relationships between older non-family members, identifying various patterns of reciprocal exchange (Siira et al., 2020).

An exploratory study on the role of non-kin carers identified dying and death as being major challenges, involving increased commitment on an emotional and physical level (Pleschberger & Wosko, 2016). However, the literature on non-kin care rarely includes the last phase of life; neither does it appear to cover ways of managing boundaries to counteract overburdening throughout the care trajectory or non-kin carers’ involvement beyond the death of an older person living alone.

In this light we designed a study based on earlier work which should contribute to exploring the roles and strategies of non-kin carers in response to increasing care demands as well as to gaining a deeper understanding of their views on and experiences of continued involvement after the older person’s death. This study is part of a qualitative longitudinal study on older people living alone and their care arrangements (Pleschberger et al., 2019).

2. Methods

A qualitative design was applied including a retrospective interpretation (Thorne, 1998) of existing interview data and the collection of new data in qualitative interviews. As one type of secondary analysis, retrospective interpretation aims to tap into an existing database to develop themes that emerged but were not fully covered in the original study.

The existing qualitative data set was generated in a study the ‘Non-kin care in end-of-life care at home’ (Pleschberger & Wosko, 2016). Within the wider framework of a qualitative exploratory design, the care trajectories of older people living alone and dying at home were reconstructed. Among others, the study was based on qualitative retrospective interviews with former non-kin carers (n=15). The data collection took place in rural and urban areas in four regions of Austria in order to account for variations in regional care systems. This data set of 15 interviews was supplemented by 8 interviews which were conducted specifically for this study, as outlined below.

2.1. Participants

The requirements for recruitment covered characteristics of the participants as well as the older people they had cared for. Those who had supported an older person living alone had to be non-kin, which includes neighbours, friends or acquaintances. At the time of recruitment, the support/care arrangement was already over due to the older person’s death. The older person living alone did not have family living nearby.

Identifying former non-kin carers who had provided end-of-life care was a major challenge. Non-kin care, naturally, does not take place within organizations. Moreover, non-kin carers often think of their involvement as private, and some do not consider themselves as carers and therefore did not answer requests for participation. Due to these issues, we followed a multipronged recruitment strategy involving home-care providers, general practitioners and local palliative care providers. Individual non-kin carers were invited to participate by care managers or care staff and were given background information if they expressed interest. If they then agreed, their contact details were passed onto the researcher, who got in touch with them, explained the aims of the research and asked for consent. We asked our contacts on several occasions if they could suggest new, potential interview partners who might be willing to participate. In addition, we recruited through online neighbourhood platforms to reach a higher number of people.

As already mentioned, the final sample consisted of 23 persons who had taken care of an elderly person (friend or neighbour) who was living in a single household. Table 1 provides an overview of the characteristics for both groups of interest. Note that in two cases there were two non-kin carers involved in supporting one person.

Table 1. Characteristics of the sample.

Non-kin carers (n=23)
Age (years)	48-84 (Ø 59.9)
Gender	female (n=18), male (n=5)
Region	urban (n=14), rural (n=9)
Caring for …	… friend (13), … neighbour (n=10)
Older people living alone (n=21)
Age (years)	57-96 (Ø 78.6)
Gender	female (n=16), male (n=5)
Diagnosis	cancer (n=15), frailty (n=3), other (n=3)

2.2. Data collection

The interview guide for the first set of interviews consisted of questions which aimed to elicit narratives at first hand, for example: Can you tell me first how it came about that you took care of Mr/Ms X? How did the situation change over time? What was the situation like immediately after the death of Mr/Mrs X? The guide was complemented by questions which focused on specific aspects in more detail, such as: What support did you provide for Mr/Ms X? What jobs or things did you do for them?

The additional interviews should enable a more focused exploration of aspects related to death and grief that were identified in the first data collection process but had not been sufficiently addressed in all interviews. Therefore, the interview guide for the second set of interviews was revised slightly, for example by adding questions such as Who took care of the funeral arrangements? What other tasks were you involved with after the older person’s death? During the interview, the interviewer also took care to cover these issues by systematically following up on responses and steering the conversation to elicit the meaning of certain aspects.

The first set of interviews was conducted in 2013 by the second author (PW). Additional data was collected more recently, between June and November 2020 by the first author (JK). The interviews took place at the participants’ homes and lasted 60-80 minutes on average (ranging from 20min to 2h 15min). Written informed consent was gathered from all of the participants before they started. The interviews were digitally recorded, transcribed verbatim and anonymized using pseudonyms.

2.3. Data analysis

In the process of analysing and recoding the data, three main themes were explored inductively: the last phase of life, the time immediately afterwards and the challenges emanating from non-kin care commitments. Starting with interviews from the second data set, all three authors discussed the emerging codes and compared them to the set of initial codes from the previous study in order to establish a new coding scheme (coding tree). Following this, the first author (JK) coded all of the data in detail, applying a constant comparative approach (Corbin & Strauss, 1998). In an ongoing process of comparing pieces of data to others, the intention was to identify variations and general patterns in the text. Finally, categories were generated based on the most frequently recurring codes and links were found between them. Again, these results were discussed within the research group. In settling on our core categories, we decided on the main themes that provide the narrative structure of the paper. The analysis process was supported by MaxQDA software.

2.4. Ethical considerations

Approval to conduct the previous study (Pleschberger & Wosko, 2016) had been obtained from the Research Committee for Scientific and Ethical Questions of the Health & Life Sciences University (UMIT, Austria) where the study was launched. The follow-up study, which was part of the longitudinal study, was approved by the Ethics Committee of the Province of Lower Austria in 2018 and extended on an annual basis.

3. Findings

The data from the present study mirrored aspects of the earlier work concerning the motives for non-kin care involvement and the transition from a supportive to a care relationship following declining health conditions until death. High emotional reciprocity and affective bonds largely shaped the basis for the beginning of a care relationship between friends and close neighbours alike. When there was little common history prior to the helping arrangement, an inner vocation, or a certain feeling of connection to the person motivated non-kin carers to engage in caregiving (Pleschberger & Wosko, 2016). New insights were gained into non-kin carers’ commitment beyond the death of the older person as this was rather neglected in the earlier study. A closer look was also taken at the risk of being overburdened that turned out to be an important issue in end-of-life care in previous data and was now investigated in more detail along with the whole process of care regarding boundary management. The results were organized in the following thematic fields:(1) commitment beyond the death of the older people living alone, (2) burdens of non-kin care, (3) boundary management – balancing involvement and (4) the benefits of non-kin care.

3.1. Commitment beyond death

Following a person’s death, legally recognized family relationships come into play as it is usually the relatives who are addressed by professionals or public authorities in such circumstances. The personal and legal affairs of the deceased must be settled, including their funeral and any last will and testament. Non-kin carers usually complied by withdrawing from their role as carers, referring to the convention that this would definitely be a family matter, like in the following quote:

Well, ah, now the son called to ask whether it wouldn’t be better if he disclaimed his inheritance, yeah. Because he somehow does not feel up to it. I told him that’s not my problem, that […] the day of death is the cut-off date for me. (friend, 52, male; 7:17)

In cases where relatives dealt with all the personal and legal affairs of the deceased, the handover of personal documents and keys to the notary was the point at which non-kin carers felt that that they had completed their job or fulfilled their commitments.

However, some non-kin carers remained involved, for example when there were no relatives, and they were named beneficiaries in the person’s will and took care of everything beyond death. In other cases, family members asked non-kin carers for their help as they seemed to know better about the deceased’s final wishes.

There were also cases, however, where relatives had little inclination to get involved or had disagreements with other relatives. In such cases, non-kin carers felt morally obliged to acknowledge the dignity of the deceased. Entrusted with their final wishes and being familiar with the older person’s preferences, non-kin carers carried out a wide range of practical tasks in the deceased’s household like cancelling services and contracts, arranging care for pets or helping to clear the house or organize the funeral, etc. In these situations, non-kin carers tried to balance the interests of the family with those of the deceased person as well as their own interests, which could be conflicting. For example, in one case the non-kin carer arranged an additional/separate ceremony to provide an honourable farewell to the deceased. Some non-kin carers even put aside their own needs to comply with relatives’ demands, while on some occasions a clear line was drawn when confronted with relatives’ exaggerated expectations:

I mean, for me, this was over, because, well, I am not there to take any orders from the niece (acquaintance, 55, female, 10:47)

Some participants only realized in retrospect that they had been much more involved than what would have felt right:

I was hoping that the family would assume their role and erm – take control of the situation […] I would perhaps, at certain points, draw the line earlier, like in areas where the family should assume responsibility (friend, 51, female;18:47).

If older persons had sorted out matters relating to their death in advance, it was straightforward for non-kin carers to deal with some issues, like people to be informed as well as the kind and place of burial, etc. Drawing up a living will could also be part of these preparations. In such cases, non-kin carers felt relieved because they only had to follow instructions and it was easier to ensure the older person's autonomy:

Well, we had already finished preparing the death notice, before, I had already done it with him, and then the undertaker came to the house once. I said that I wanted him to say what he wants himself and, and also to choose the coffin and even if this sounds macabre but erm it was – is such a big relief for me later, when the time comes. (acquaintance, 53, female; 23:56)

Often, incomplete or non-existent preparations on the part of the older person – due to their indifference concerning decisions after death or death coming faster than expected – raised challenges for non-kin carers because they wanted to act in accordance with their wishes.

Finally non-kin carers also faced feelings of grief and bereavement. These were particularly strong when close emotional bonds had been established in the relationship.

And […] I really have to let myself take the time now, to really grieve because otherwise it’ll catch up with me. But it’s not possible again because now she [the daughter] is clearing the house. So I’m still involved in the whole thing. (close neighbour, 53, female; 20:76)

Close relationships were found between friends as well as between neighbours, as our results show, proving that boundaries between different groups of non-kin carers might be blurred with regard to closeness and the character of the relationship.

3.2. Burdens of non-kin care

High levels of care commitments, in particular towards the end of life, were accompanied by emotional and psychological burdens for non-kin carers. They often mentioned feelings of worry and unease, fearing that something might happen whenever they were not at the older person’s side, as reflected in the following statement:

I was always nervous when I was on my way to his place, you never knew in what condition you would find him (friend, 64, male; 8:74)

Role conflicts were identified as non-kin carers tried to simultaneously balance caregiving with partners, family life or work, leading to feelings of stress. Some non-kin carers even decided not to go on holiday or called the older person daily when away. Emotional distress also arose when non-kin carers had to deal with unfamiliar moods on the part of the care-dependent person such as depression, irritability or anger. Difficult dynamics and conflicts within the family were identified as another contributing factor for stress among non-kin carers as they were caught between the frontlines and met with mistrust by relatives:

The relationship with the niece was quite tense […] she was always assuming bad things (neighbour, 56, female, 2:36).

There was also evidence for stress-related diseases among non-kin carers with very high care commitments.

Moreover, we found that non-kin carers who were largely responsible for care on their own were most likely to experience overburdening situations. This was particularly the case when they felt the strain of being fully responsible for the other person’s fate in critical moments or decision-making situations.

I noticed that with every signature I, I added to a power of, of attorney. I am now assuming erm full responsibility for a person. I mean in, in, in all areas, health, finance and, and everything that is connected with that. (acquaintance, 53, female; 20:148)

This sheds light on the issue of shared accountability in a wider care network as an important prerequisite for alleviating the burden of responsibility.

3.3. Boundary management

In response to burdensome and challenging situations, non-kin carers established limits to varying degrees, proactively defining and negotiating boundaries throughout the caregiving process. This was one way for non-kin carers to deal with and limit the expectations of the older people, their relatives or even their own family members.

Delegating care responsibilities to formal services was one strategy used when non-kin carers realized that the level of caregiving exceeded their own capacities. However, this often turned out to be a major challenge when attempts to introduce professional care were rejected by the older person. Repeated discussions were required to convince them of the need for additional help. When such conversations were ineffective, short-term withdrawal of support was used as a strategy to deal with the situation, as one carer explained:

Well, it was just in the last phase before he got 24h support, for example, that I realized that I have to withdraw so he will notice himself that he needs additional support because I can’t do it on my own anymore. (acquaintance, 53, female, 20:88)

Aggressive or disrespectful behaviour was another reason for non-kin carers to establish limits to their tolerance. Moreover, we found that female non-kin carers had to deal with gendered expectations of certain care tasks as some male care recipients assumed that they would take over personal hygiene such as washing or showering them. Some drew a clear line at this point:

‘That won’t do, I don’t like the idea and I’m not a nurse either,’ that’s what I told him. ‘I’m not going to help you shower.’ Because he then reckoned, yeah, that he doesn’t need them, home helpers or anybody, because they – I can give him a shower too. So I said ‘I’m not going to do that.’ (neighbour, 61, female; 19:66)

When the partner or spouse of a non-kin carer objected to their level of involvement, boundaries had to be negotiated with respect to the intensity of their commitment. Although partners were often considered as being supportive or were even involved in care tasks, some would point out the limits at a certain point. Non-kin carers were then required to negotiate priorities and justify their level of commitment. However, confrontations with partners or family members could also help non-kin carers to know their limitations and set out boundaries for care demands for their own benefit.

This is more than a favour for friends, we cannot do that, because I have a job, my wife has a job, etc., etc., etc. He needs professional care [eine Pflege]. It doesn’t work, I mean, we can’t go on holiday because of that. So that was the point when we said, he has to stay in hospital now, or something else must be organized. (friend, 64, male; 8:84)

In some cases, non-kin carers revealed a tendency, grounded in their personality, to go beyond their limits. Their own health and well-being were then often considered to be of secondary importance. However, the process of drawing the line was also influenced by non-kin carers’ personal expectations and the degree of moral obligation they felt. This was difficult for those who felt that they were irreplaceable in their role as carers, like in the following case:

Well, actually, in the last phase I only went to visit her because she was used to it and because I thought that I cannot leave this person alone. She was always, she told everybody, Mrs S, she said, when someone asked if she had relatives, no, she said, but I have Mrs S. And so I felt obliged to visit her. (neighbour, 63, female; 12:204)

This quote shows how a feeling of moral obligation in non-kin carers fosters a high level of commitment despite it being quite a high burden. The situation of a non-kin carer being the only person of trust was quite common in our sample as this is a characteristic of older people living alone.

3.4. Benefits of non-kin care

The balancing act relating to involvement was also shaped by positive feelings linked to caregiving and non-kin carers’ subjective evaluation of the caregiving role. Assigning meaning to the caregiving role led to a variety of positive feelings among non-kin carers. Inner satisfaction was expressed as they recognized the importance of their commitment for improving the older person’s quality of life.

[…] yes, he said, that I have, I mean of course I was very happy about that, that I have made the last few months and weeks much more pleasant for him, he said […]. (neighbour, 61, female; 19:76)

The competence to deal with complex situations and maintain home-care arrangements gave them a positive sense of achievement in their role as caregivers. The older person’s showing trust and expressing appreciation and gratitude additionally strengthened their perception of doing a good job and helped them cope with the situation.

Given the rewards of caregiving, non-kin carers were found to appreciate their responsibilities and roles as carers. When dealing with challenges and burdensome situations, their positive perceptions seemed to influence the perceived level of the burden. Despite high care demands, joy and the willingness to be involved were emphasized, being mentioned frequently in their own interpretations of the caregiving experience as reflected in the following statement:

It was a lot of work, I have to say that, but I really liked doing it. Honestly, I really liked doing it. (neighbour, 54, female; 2:101)

The predominantly positive evaluation of the caregiving process was also reflected in the fact that most non-kin carers in our sample affirmed that they would be willing to commit to supporting an older person in the future again.

4. Discussion

This retrospective qualitative study described the commitment of primary non-kin carers to maintaining home care for older people living alone at the end of life and the ways of dealing with various challenges throughout the care process and beyond. Overall, a very high degree of care commitment was found among non-kin carers. Owing to the complexity of their role as primary caregivers at the end of life, non-kin carers were required to find ways of maintaining homecare arrangements considering their own limited resources. When dealing with high demands, setting boundaries for care burdens and negotiating care responsibilities were prevailing themes.

Moreover, our findings revealed that involvement does not end with the older person’s death and raise the issue of dignity. Commitment beyond death is linked to the question of how to ensure the dignity of the older person, whether it be immediately after death – organizing an honourable farewell – or on a long-term basis – taking care of the grave (Pleschberger, 2007). Interactions and inconsistencies between non-kin carers and relatives of the deceased became most apparent at this point, reflecting a mostly neglected issue in research to date. While older people living alone usually try to settle important issues in advance, it is non-kin carers who guarantee that their wishes are fulfilled, even if they go against families’ plans. Formal services did not play any role in attending to the deceased person’s affairs, as the financing of formal services ends with the death of the person.

Burdens of care and their influence on caregiving outcomes have been described in some detail in the literature on informal caregiving in general, with substantial evidence for both pitfalls and support needs (see, e.g., Kieninger et al. 2019; Lopez Hartmann et al., 2019; Prevo et al., 2018; Proot et al., 2003). Not surprisingly, we came across this issue in non-kin care, too; however, compared with the mainstream discourse on informal caregiving, differences were found with respect to perceptions of burdens and setting boundaries. Our findings suggest that opportunities to define and set boundaries may be easier for non-kin carers than family carers as the decision to provide care is one of choice. As previous research has suggested, self-motivated helping behaviours are associated with psychological well-being (Weinstein & Ryan, 2010) while feeling a lack of choice in taking on the caregiving role is a risk factor for negative health effects (Del-Pino-Casado et al., 2018; Schulz et al., 2012). Family carers, in turn, benefit from their legitimate rights and family privileges to decide on care settings (Allan, 2008).

Differences between the commitment of non-kin carers and family caregivers could lie in social norms which consider family care to be an obligation and non-kin care to be voluntary. Non-kin care commitments thus gain social recognition as the caregivers are doing a job that cannot be taken for granted. The voluntary framework allows them to perceive their commitment as an act of solidarity, which promotes a feeling of being part of a supportive community (Van Willigen, 2000). This reflects the potential of current local care initiatives and caring community movements which are seen as social efforts to support vulnerable and dying people at home (Rosenberg et al., 2015; Wegleitner & Schuchter, 2018).

However, the voluntary nature of non-kin care does not imply an absence of feelings of obligation or moral duty among such carers. On the contrary, our research revealed a high sense of responsibility among non-kin carers. They were aware of their key roles in maintaining home care and felt pressured not to let the older person down. In this context, elements of trust and emotional closeness also need to be considered that are likely to be strengthened along the care trajectory and towards the end of life (Horsfall et al., 2012) and may increase non-kin carers’ sense of obligation over time. This notion supports previous findings of non-family members taking on obligations and personal affection similar to family members when serving as substitutes for missing family ties (Braithwaite et al., 2010; Mac Rae, 1992; Voorpostel, 2013).

This study contains some limitations. Relying on volunteers recruited by health professionals limited our ability to identify the full range of non-kin care arrangements also involving more isolated non-kin carers. Moreover, we did not focus on the role of palliative care teams or health professionals that were part of most care networks and need to be considered in the context of sustainable and successful care arrangements at the end of life (Pleschberger & Wosko, 2016). Neither were we able to cover religious and cultural differences although they would have provided important insights into the influence of norms and beliefs concerning caregiving experiences and individual coping strategies. We also appreciate that perceptions on giving care are closely intertwined with age and gender differences, but few conclusions were drawn with respect to these variables.

Finally, our findings suggest that a more differentiated approach is needed to defining and conceptualizing non-kin care relationships. Although distinguishing between neighbours and friends or other non-family members still seems useful, individual degrees of proximity and depths of relationships need to be considered. Family-like elements and forms of fictive kinships that have been identified in various non-kin care relationships provide important insights into feelings of responsibility and the reinforcement of voluntary commitment (Barker, 2002; Nelson, 2013; Wenger, 1990). Acknowledging the heterogeneity of non-kin care relationships would allow researchers to validate the effects of emotional closeness within non-kin care relationships and the unique experiences of non-kin carers.

What is known about this topic

• Non-kin carers make multiple efforts to maintain home care arrangements for older people living alone towards the end of life.

• Formal care services, including palliative care teams, provide crucial support to non-kin carers.

What this paper adds

• Despite the voluntary nature of non-kin care relationships, non-kin carers experienced feelings of great responsibility and obligation in the last phase of life.

• Boundary management turned out to be most challenging for non-kin carers with respect to delegating care tasks to formal services.

• After death, conflicts could arise between non-kin carers and relatives of the deceased concerning their responsibility for and handling of after-death affairs.

Data Availability Statement

Data available on request due to privacy/ethical restrictions.