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Moving into a care home: the role of adult children in the placement process
International Journal of Nursing Studies 39 (2002) 353–362
Moving into a care home: the role of adult children in the placement process Jonas Sandberga,*, Ulla Lundhb,c, Mike Noland Department of Neuroscience and Locomotion, Division of Geriatrics, Faculty of Health Sciences, Linko.ping University, S-581-85 Linko.ping, Sweden b Department of Medicine and Care Division of Nursing Science, Linko.ping University, Sweden c Department of Nursing Science, University College of Health Sciences, Jo.nko.ping, Sweden d School of Nursing and Midwifery, University of Sheffield, Samuel Fox House, Northern General Hospital, Herries Road, Sheffield, S5 7AU, UK a
Received 2 January 2001; accepted 10 January 2001
Abstract Admission of an older person to a care home is widely recognised as a very stressful period for the family and one which, despite community care policy, is likely to be an increasingly common experience. Although there is a growing research base in this area, there have been few studies on the role of adult children in supporting their parents during this difficult transition. This paper reports on the third stage of a grounded theory study conducted in Sweden which explored the part played by adult children in the placement process. Data were collected from 13 adult children using in-depth semi-structured interviews and the results are compared with themes previously derived from interviews with 26 spouse carers. The analysis reveals important overlaps and differences and suggests the need for further research exploring the dynamics of the placement process. r 2002 Elsevier Science Ltd. All rights reserved. Keywords: Care homes; Placement; Spouse carers; Adult children; Grounded theory
1. Introduction Until recently, the support needs of frail older people in Sweden have been met primarily by the state, with there being little expectation that the family would provide care. This situation is now changing with increasing emphasis being placed on the role of the family (Socialstyrelsen, 1998), with the state recognising the importance of providing family carers with appropriate services and information (SOU, 1999). In Sweden, it is not the cultural norm for ageing parents to move in with their children and therefore the majority of resident carers are spouses. In situations where spouses can no longer care, or no spouse is available, then other options such as care homes (a generic term including nursing *Corresponding author. Tel.: +46-13-221-782. E-mail address: [email protected] (J. Sandberg).
homes, sheltered housing and group homes) provide alternatives to in-home care. Therefore, although the majority of older people in Sweden live in their own homes, about 20% of those aged 80–89 live in a care home, with this figure rising to 50% at 90 (Socialstyrelsen, 1996). Care homes in Sweden have generally been highly regarded and admission has not usually been associated with the negative images prevalent in many other parts of Europe (Jani-le-Bris, 1993; Victor, 1997). Over the past few years, however, concern over the standards of care in care homes has increased and it is therefore, important that family members are supported in the placement process if stress is to be reduced and subsequent adjustment improved (Lundh et al., 2000; Nolan and Dellasega, 1999, 2000). However, because of the previously unproblematic nature of placement in Sweden, few studies have considered this issue (Hertzberg and Ekman, 2000). This paper reports on the third
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phase of a grounded theory study exploring the experience of placing a spouse in a care home from the perspectives of all the major actors involved. The first two phases gathered data from spouses who had recently placed a partner in a care home (Lundh et al., 2000; Sandberg et al., 2000), and these data highlighted the important, but relatively unexplored, role of children as secondary (or occasionally primary) decision-makers. The aim of the third phase, on which this paper is based, was to gain the perceptions of the children themselves in order to understand the role that they play more fully. The paper begins with a brief consideration of the appropriate literature, the methods used in the present study, and the relevant results from the first two phases.
2. Background and method Adult children are key supporters of frail older people (Johnson, 1995; Grafstro. m et al., 1995) with the provision of instrumental support increasing as their parent’s age (Burholt and Wenger, 1998) to the extent that it often impinges on the child’s ability to sustain their own career (Boaz et al., 1999). Moreover, in addition to direct help adult children also engage in a range of differing types of care providing supervision and support intended to maintain the dignity and selfesteem of their parents (Bowers, 1987; Nolan et al., 1996a). There are often gender differences in the types of help given (Grafstro. m et al., 1995) with sons tending to provide less direct care but often providing financial and emotional support (Horowitz, 1985; Montgomery and Kamo, 1989). Children of both genders can also play an important part in making key decisions about future care, often taking a lead role (Harris, 1998). Moreover, the involvement of children continues after the placement of a parent in a care home, with daughters in particular continuing to provide direct care (Friedemann et al., 1999), a finding consistent with recent studies in Sweden (Jansson et al., 1998). In addition, children provide an important link between the parent and the wider society (Li et al., 2000), while also working to maintain ‘family connectedness’ (Bowers, 1988). However, most of the available literature relates to children who occupy primary caregiving roles and rather less is known about the secondary support that children may give to a parent providing care to a spouse. Gaining a better insight into this secondary caring role was the aim of the interviews upon which this paper is based. It forms part of a larger study exploring the experiences of placing a spouse in a care home in Sweden (Lundh et al., 2000; Sandberg et al., 2000). The study adopted a grounded theory approach in an effort to not only understand the placement process but also to develop a theory with practical application. Charmaz (2000) argues that the canons of good grounded theory,
namely, fit, work, relevance and modifiability make it particularly suited to studies which aim to enhance understanding of the empirical world while also resulting in theories relevant to ‘real life’ situations. Grounded theory is a general methodology which is inherently neither qualitative or quantitative (Glaser and Strauss, 1967), however, the majority of its applications have been qualitative in nature and due to the limited previous work in the substantive area of interest a qualitative model was adopted for the present study. In the first two phases of the study, data were gathered from 26 spouse carers using in-depth semi-structured interviews on their experience of the placement process (Lundh et al., 2000; Sandberg et al., 2000). Using a theoretical sample and a constant comparative method, data were analysed using a combination of open and axial coding (Strauss and Corbin, 1994). Based on the first 14 interviews, an understanding of placement as a temporal experience emerged comprising four overlapping phases (Lundh et al., 2000). * * * *
Making the decision Making the move Adjusting to the move Reorientation to life
For spouses, the placement process was a highly emotional experience, particularly their separation from an often life-long partner. Spouses were largely unprepared for the extent of the loss they felt and although children and others were supportive at this time, the help provided was often of a practical rather than an emotional nature. After the placement, spouses worked hard to maintain the identity of their partner, seeking continuity in their relationships. Subsequently, a second round of interviews was undertaken with 12 spouses in order to explore the process of separation and their efforts to maintain relationships in more detail (Sandberg et al., 2000). These data suggested that the process of ‘separation’ was not a discrete event but rather one which involved physical, emotional and psychological components. However, there was often very limited dialogue between spouses and an absence of full and frank discussion, frequently heightening a sense of betrayal felt by some spouses who were placing their partner in care. However, the community dwelling spouse often ‘put on a brave face’ for the sake of their partner and consequently did not reveal the true extent and depth of their emotions. Some did ‘seek solace’ with children, friends or professionals and when this was handled sensitively it was considered to be of great benefit. This was not the norm though and most of the help that spouses received at this time was of a practical or instrumental nature.
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Following placement ‘keeping’ emerged as a key activity explaining spouses’ efforts to maintain their relationship with their partner, while also forging new roles for themselves as carers, particularly in their interactions with staff in care homes (Sandberg et al., 2000). This ‘keeping’ took a variety of forms: *
*
*
Keeping it goingFefforts to maintain their relationship with their spouse. Keeping it specialFefforts to retain valued aspects of their relationships that marked it out as unique. Keeping an eyeFon staff activity and the quality of care given to their spouse.
In terms of their relationships with the staff, differing forms of keeping also emerged. These were: *
*
*
*
Keeping your distanceFminimal involvement with the staff. Keeping quietFspouses were often concerned over the quality of care given to their partner but did not wish to ‘rock the boat’. Keep on tryingFspouses continued efforts to improve the quality of care by interacting with the staff. Keeping things closeFthis was apparent when spouses had good relationships with the staff and worked to keep them this way.
From the 26 initial interviews two key processes in support of the placement process emerged and were termed ‘preparation for separation’, that is, efforts to better prepare spouses for the impact of separation from their partner and ‘preparation for integration’, that is, efforts to assist spouses in maintaining their relationship with their partner while also forging new roles and relationships with the staff. At various points in these initial interviews, children were described as playing an important role both prior to, and following, admission and it was apparent that a full appreciation of the placement process would not emerge until the role of children was better understood. That was the purpose of the interviews reported in this paper.
3. Data collection and analysis A purposive sampling method was used to select children who had been involved in supporting a parent who had placed a partner in a care home within the previous 12 months. Potential informants were identified with the help of the Local Authority Social Services Department in two municipalities in Southern Sweden. A letter providing details of the study together with a form signalling an interest in taking part were sent to 27 individuals and those who returned the form were contacted via the telephone for a further discussion of the project.
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On this basis, 13 children (11 daughters and 2 sons) agreed to be interviewed. Interviews took place in their own homes and were semi-structured in nature using an interview guide that allowed for an element of consistency but also permitted individuals to explore further issues that they considered to be particularly important (Holloway and Wheeler, 1996). Interviews lasted between half an hour to an hour and a half and with permission were tape-recorded for later transcription and analysis. The interview guide focused not only on the children’s experience of the placement but also explained their caring role with respect to their parent and, in addition, the impact that the placement had on the informants as individuals. Interviews of this nature are sensitive and care was taken to ensure that ethical considerations were met. Prior to the study, approval was given by the ethical committee at Linko. ping University and informants were assured of anonymity and confidentiality. It was also made clear that informants could withdraw from the study at any point during the interview. In the event, although some children found recounting their experience an emotional event, none wished to withdraw and indeed, it seemed that the interview was often a cathartic process which allowed informants to talk of their feelings with a neutral but interested and empathetic third party. Following the interviews, the lead author made initial notes immediately afterwards and data were transcribed as soon as possible. As Charmaz (2000) notes, in grounded theory analysis ‘begins early’ through preliminary coding and the assignment of codes to categories. This is an interactive and iterative process. This initial or open coding proceeds in a line by line fashion which helps build ideas but guards against imposing theories on the data too early. It also familiarises the analyst with the data facilitating constant comparison and identification of ‘sensitising concepts’ (Charmaz, 2000) or ‘local concepts’ (Glaser and Strauss, 1967) that guide but do not direct subsequent analysis (Morse, 1994). In the present context, these concepts included those that had emerged from the initial two phases of interviews, particularly the notions of ‘preparation for separation’ (Lundh et al., 2000) and ‘preparation for integration’ (Sandberg et al., 2000), in relation to the temporal sequencing of the placement in terms of making the decision, making the move, and adjusting to the move. The generation of codes facilitates the comparison of data which is ‘a major technique in ground theory’ (Charmaz, 2000). Subsequently, ‘selective’ or ‘focused’ coding uses the initial codes that appear frequently or make a significant contribution to understanding, to help organise larger volumes of data. This, according to Charmaz (2000), is a more conceptual process than line by line coding and leads to categories which account for
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most of the data. These categories allow for the synthesis of the data (Morse, 1994) aiding ultimate theorisation. The process of analysis in the present study was greatly facilitated by memo writing which identified the links between codes, categories and the emergent theory, thereby making more explicit the ‘processes, assumptions and actions’ subsumed in the analysis (Charmaz, 2000). As noted above, in the present analysis, attention was given to the temporal sequencing of the placement process and this provided a loose cognitive structure helping to integrate the data into a more coherent whole.
4. Results As a result of the analysis it appeared that children fulfilled a number of roles, influenced largely by the degree to which they took a lead in the decision-making process. Following the placement, children also sought to engage both with the spouse remaining in the community and the one who had been admitted to the care home. The results of the analysis are presented below, initially following the above temporal sequence, beginning with the children’s role in making the decision.
6. Allowing Some informants felt strongly that decisions about such a major life event as placement in a care home had to be taken primarily by their parents. Therefore, while they tried to take all available opportunities to ‘allow’ discussion to occur, they mainly waited until their parents had reached the initial decision about the possibility of placement themselves. However, as with the data from the earlier interviews undertaken with the spouse, carers’ full and frank discussion involving both parents was rare. Rather it was usually the caregiving spouse who took the lead, with children trying to create an atmosphere within which their parents could at least discuss the idea in a sympathetic context: ‘Well... we tried to discuss things at times... we did, but it had to be her choice... she had to take the decisiony’ Subsequently, once the initial decision had been taken, children were very supportive and often, then took a more active role in the process of selecting a home and organising the move. We have termed this ‘advocating’ and it involved children working with, or for, their parents to ensure that the rest of the placement process ran as smoothly as possible. This often involved convincing the key decision-makers in the municipality that placement was an appropriate way forward:
5. Making the decision Although, as will become apparent, children played a variety of roles throughout the placement process, their involvement in making the decision was motivated largely by a realisation that for one parent the caregiving role was becoming too difficult or burdensome. Children often seemed to appreciate this before their caregiving parent and consequently grew increasingly concerned at the effects of caring that they perceived to be having on their parent’s health: ‘She refused to see... there were so many feelings involved... so she refused to see... that he needed help.’ Children often felt that due to the close bonds between their parents, neither spouse wished to raise the prospect of other potential caring arrangements and in such cases, children often acted as the catalyst for beginning the placement process. However, while all the informants played some role in making the decision, the degree to which they were directive or not varied and could be divided into three main categories as follows: * * *
Allowing Initiating Pushing
‘We really pushed them (the staff) we knew that he (father) didn’t have the strength to carry ony’ Once the decision-makers had been convinced (usually the home care organiser), then children also worked to ensure that a suitable home was selected, one with a good reputation in a locality which was conveniently located for their parent to visit. Although the advocating role was often undertaken primarily by one child, in cases where there were several children then siblings would sometimes work together in a collaborative way, each taking on differing roles in facilitating the placement process.
7. Initiating As the name suggests, initiating involved a more proactive role for children, in which the initial idea for placement was raised by the child his/herself. Once again, informants were motivated by their concerns for the caregiving spouse’s health and the demands made by the need to deliver the type of care that the cared-for parent required. In these instances, informants were sensitive to the fact that the care-giving parent was reluctant to initiate the placement of process and so they
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took the lead with the aim of reducing subsequent negative emotions that might be experienced: ‘I think that she felt good that I took this responsibility... because she had a very bad conscience... because she didn’t have the strength to carry ony’ ‘y the decision was very hard to take and mum cried a lot... she wanted to carry on... but as a daughter, and with my experience of working with older people, I understood that she couldn’t manage... so I very much took control over thisy’ Interestingly, although children acted to try and reduce the guilt experienced by the caregiver parent, their own more active role exposed them to similar feelings, leaving them to question whether more could not have been done to prevent the placement: ‘... but you wonder... are we doing this too early... is she really that bad...?’ Some informants even considered the prospect of their parents moving in with them, a rare situation in Sweden: ‘I would really have liked to have him in my house (father) but this is not a good idea when you are married... it wouldn’t have worked I don’t think.’
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However, as will be highlighted shortly in relation to ‘making the move’, while children may have recognised the emotional conflict that their parents were experiencing, and indeed often tried to relieve them of it by taking responsibility themselves, they were reluctant to directly address and discuss the emotional impact of the move with either parent. ‘Pushing’, as with allowing and initiating, can be seen as points along a continuum with the motivation for children’s involvement in the placement process being a concern for the fragility of the caregiving situation and the perceived inability of the caregiving parent to deliver the care required, without further detriment to their health. Occasionally, however, when the child him/ herself took a more direct and active role in supporting both parents, then their own failing health was also a factor in the decision-making process: ‘I had an operation on my foot in 1996 and I was unable to help themy couldn’t shop for themy, in fact couldn’t do anything to support themy’ This latter scenario provides an interesting example highlighting the often complex and subtle caregiving arrangements that support frail older people at home. The role of children as secondary caregivers is an issue that will be returned to later.
9. Making the move 8. Pushing ‘Pushing’ describes the most active role in which children not only took a lead in organising the move to the care home but importantly ‘pushed’ the initial decision. Once again the motivation for this appeared altruistic, with the best interests of both parents being uppermost in informant’s minds. As with all the cases, children were concerned about the increasing toll that caregiving was taking on the spouse carers health but also recognised that unless they took a firm stance that the issue of placement would not be raised: ‘...we pushed quite hard as children... She (mother) felt that she had to take care of dad... that it was her calling, or something like that...’
After the decision to seek placement had been made and children had ‘advocated’ for their parents in finding the most suitable home their role in making the actual move was confined primarily to practical/instrumental aspects, with little explicit focus on the emotional impact of separation. Informants said that they were aware of their parent’s feelings but did not discuss them, preferring instead to ensure that the move proceeded with as little disruption as possible: ‘ywe (the children) carried it (the move) out... you can say partly... against mum’s feelings... maybe not intellectually but against her feelings... but of course she showed us gratitude for dealing with all the practical partsy’
Informants expressed their reluctance to force issues but considered that they had no other choice. However, they recognised that it was often a difficult time for the caregiving parent and also therefore tried to help as much as possible:
The practical aspects involved such things as arranging for the removal of furniture and personal belongings to the care home and even to decorating the room. However, the sub-text was still one of concern for the community-dwelling parent, tinged with a sense of relief for the children as their own concerns had been lessened:
‘It was very tough for her (mother), she was very sad about the placement so we tried to help and be practicaly’
‘I felt relievedy reallyy because I thought a lot about mum who had struggled for so longy I mean she was worn outy I could see thaty her body
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couldn’t take anymorey she is 70y no way does she have the strength.’
10. Adjusting to the move Adjusting to the move refers to the events that unfolded after the placement occurred and, as noted earlier, for spouses this consisted of two major activities. The first related to their efforts to sustain their relationship with their partner and to maintain their identity as a couple. The second focus of effort was the need to establish new roles and relationships with the staff in the home. As described briefly earlier, the basic process involved here was that of ‘keeping’. It is therefore, very interesting that whilst there were similarities between the ways in which spouses and children ‘adjusted to the move’ there were also fundamental differences. Foremost amongst these was the fact that children no longer seemed to view their parents as a couple but rather interacted with the parent in the community and the parent in the care home in quite distinct ways.
11. Supporting the parent in the community For some children, the experience of a shared placement had brought them closer to their parent, providing new perspectives on their relationship: ‘Well, we have become more... open with each other and have reshaped the way we see ourselves I think.’ Additionally, however, children now often found themselves facing a dilemma, wishing to provide extra support for their parent in the community but at the same time not wanting to reduce their independence nor to compromise their relationships with their own family. In response to this dilemma, children tended to assume increased responsibility for some roles previously undertaken by the parent now in care whilst at the same time ‘keeping an eye’ on the parent in the community to see that they were coping adequately. For the most part, additional responsibilities related mainly to dealing with financial matters, particularly when a father had been admitted to care and the mother had little experience of dealing with money: ‘y and from that moment (admission) I have taken over responsibility for the financesy’ There was also a continuation of the advocacy role whereby children assisted their parents in their dealings with the authorities. Other more practical manifestations of assuming new responsibility occurred when
children assisted with gender specific tasks such as heavy domestic work, for example, gardening and decorating when a father had been admitted to care, or other domestic work, for example, cooking and washing when a mother had been admitted. Such activities were overt and acknowledged both by the parent living in the community and the child. The ‘keeping an eye’ activities were more subtle and usually involved efforts to keep the parent engaged with life and to maintain their self-esteem: ‘yhe’s so lonely but he doesn’t seek contact... no he doesn’t... so he spends a lot of his time with usy’ This often involved inviting the parent over to dinner or to enjoy family events. For those children who lived at a greater distance, telephone contact tended to increase. Once again, however, tensions were apparent with children not wishing to ‘take over’ too much control nor to let their new responsibilities sour their relationships within their own family: ‘I try to be there as much as I can, but I have my life as well.’ Balancing these two sets of demands often required a delicate set of interactions so that the needs of all those involved could be met.
12. Supporting the parent in the care home Children generally had far fewer concerns than spouses about the instrumental care of their parent in the care home and were usually quite happy to delegate this to the staff. Nevertheless, they still ‘kept an eye’ on the care delivered in ways similar to those described by the spouses in the earlier interviews. This ‘keeping an eye’ might involve direct observation during visiting as well as frequent contact with staff over the telephone. In cases where children were unhappy with the care they would sometimes get involved in direct care delivery, but not to the extent described by their parents. Occasionally they wanted to directly confront the staff with their concerns but were stopped from doing so by their community-dwelling parent: ‘yand my mother is very anxious if I do this (want to raise concerns with staff) because she believes that dad will get a telling off if I doy’ This resulted in children being ever more vigilant in ‘keeping an eye’ on things: ‘yand then I have to check... since the care is that bad I have to check... not that I sneak around, but you knowy’
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Sources of concern often related to aspects of personal care such as washing, bathing and hygiene or to failure by the staff to consider the individual preferences of parents or to recognise features that helped to mark the parent out as a unique individual. As with the spouse interview, another area in which children took an active role was in seeking to help keep their parent ‘in touch’, particularly with the wider family, and especially grandchildren: ‘I talk a lot about things, mostly the children and what they are doing and so on.’ Children often coordinated their visits with the parent living in the community so that the parent in care would have visitors interspersed throughout the week: ‘We visit him at different times... mum visits him during the week, but she finds it difficult to come here at weekendsy we therefore visit more at the weekendsy’ Often such visits went beyond simply keeping the parent in touch with the wider family and efforts were also made to enrich and enhance their life. During the initial interviews with spouses many described how they tried to keep their relationship ‘special’ by ensuring that cherished routines were maintained. Similar activities and motives emerged from the interviews with children. However, these involved efforts to ‘make it special’ rather than to ‘keep it special’. In other words, rather than drawing on established and previously shared routines, as did spouses, children sought to introduce new activities or events that would make their parent in care feel special and highlight their individuality to the staff. Examples of this included ensuring that members of the family, especially grandchildren, of whom their parent was proud visited the home. For instance, one grandchild who was a military officer often visited in his uniform: ‘y his grandpa’s jewel and he’s also a military officer and when he visits in his uniform... well grandpa feels so special and its something extray’ Other tactics involved maintaining the special skills and abilities of their parent while also making other residents and staff aware of these. For example, one mother had a unique recipe for Swedish cheesecake (families tend to have their own cherished recipes for this Swedish delicacy) that she had given to her daughter. Her daughter therefore arranged for her mother to help bake enough cheesecake for all the residents and staff at the home: ‘yand we had the whole kitchen filled with older people... and almost all of them had done this (baked cheesecake to their own recipe) in the past and we all
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talked and reminiscedy it was really something specialy’ As important as the above activities were a number of children also tried to ‘make it special’ in a more fundamental way. This concerned their relationship with the parent in care. All the children were naturally aware of the increasing frailty of their parents but the admission process had brought home to many just how frail one parent had become. This caused them to reflect upon the nature of their past and present relationship with their parent, and fuelled a desire to re-establish or establish good relationships before it was too late: ‘Damn, I think I have missed out a lot by not asking him for help while there was still timey I’m sure that he would havey given me a lot if I’d let himy’ Interestingly, for some informants the fact that their parents no longer lived together provided opportunities for them to get to know their parents in differing ways: ‘I try to visit dad very often... when mum’s not around because I get a better relationship with dad then. Mum is quite dominanty’ Although such a reaction was uncommon, it nevertheless highlights the often subtle, complex and delicate relationship that characterise family care. Indeed, the data from the interviews with children reinforce the diverse, sometimes implicit, and occasionally poorly developed channels of communication that are involved in major life decisions, such as admission to a care home.
13. Discussion The primary purpose of the present study is to develop a grounded theory of the placement of a spouse in care that captures the temporal nature of this experience and also reflects the perspectives of several of the major actors involved. Consistent with a grounded theory approach, the major actors were not determined in advance but rather identified on the basis of the two sets of interviews undertaken with spouses who had recently placed a partner in care. Children emerged as exerting an important influence in many of these interviews. Due to the cultural norms in Sweden ageing parents rarely move in with their adult children but children often play a significant role either in supporting one parent caring for another or care ‘at a distance’ for parents who live alone. As noted earlier, although there have been several studies that have considered the role of children as primary or main carers (whether or not their parents live with them), very few have looked at children as secondary carers supporting the main carer in important decisions such as care home placement.
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This is typical of caregiving research more generally where the focus has been mostly on the caregiving dyad (cared-for person and primary carer) (Qualls and Zarit, 2000; Qualls, 2000; Mitrini and Zafa, 2000). Recently, there have been calls to consider more carefully the role of the family as a whole (Qualls and Zarit, 2000) and in particular the rules and norms that govern family-life and decision-making, especially during major transitions (Qualls, 2000). It is suggested that families cope better when beliefs and value systems are shared and rules and boundaries are clear and agreed (Qualls, 2000). Family communication models, levels of attachment and problem-solving skills are therefore seen as being particularly important. The interviews in the present study were conducted with children who were initially secondary caregivers but who, during the process of placing one parent in care, moved into roles more akin to those of primary caregivers, especially for the parent who remained in the community. From a temporal perspective varying roles in the decision to seek care emerged, exhibiting differing levels of direct intervention from allowing to forcing. What was apparent, however, was that although children were aware of the difficult emotions that their parents experienced, they focused mainly on the practical aspects of the move. In contrast to their parents who worked hard to maintain their status as a couple following placement, children seemed to adopt two quite distinct roles, one with the parent living in the community and the other with the parent living in the home. In the former case, children tended to take over responsibility for certain care tasks (e.g. finances or domestic help) while also increasing levels of surveillance. These are characteristic of the supervisory and instrumental care described by Bowers (1987) suggesting that children were now moving into the role of primary carers. Informants recognised the tensions this created in wishing simultaneously to support their parent, while not making them too dependent nor becoming too engulfed in care themselves. This sort of delicate balancing act has been described by Seale (1996) and is a dynamic that requires further exploration, especially in the post-placement period. With respect to the parent in care, children also described the ‘keeping an eye’ and ‘keeping in touch’ activities seen as important by spouses but in addition children wished to ‘make it special’ for their parent by highlighting their individuality and improving their quality of life. This reinforces the role of biographical information and the ‘preservative’ care previously described by Bowers (1988) and affirms the importance of ‘enriching’ activities outlined by Cartwright et al. (1994). However, the value of enriching activities have not previously been described in the context of a care home. Once again this is an area in which there is a need
for further research. In addition to enriching their parent’s life, children also wished to make their relationship with the parent special, realising the limited time they might have to do so in the future. Three things in particular emerge as striking from the present data. Firstly, both in the present interviews, and the earlier ones with spouses, there was very little evidence of direct involvement of the spouse who was being admitted to care. Although in some instances this was due to cognitive frailty, this does not account for all cases. Secondly, there was limited recognition given to the emotional impact on the spouse carer of the admission of their partner to care, something previously highlighted as a lack of ‘preparation for separation’ (Lundh et al., 2000). Thirdly, there is the contrast between spouses’ efforts to maintain their identity as a ‘couple’, and the tendency amongst children to see their parents almost as separate entities. These findings suggest that the shared and explicit value systems and boundaries advocated by Qualls (2000) are not necessarily the norm, especially during difficult transitions such as that into a care home. Theories to better understand this process are therefore all the more important.
14. Conclusions One of the important characteristics of grounded theory is the desire not only to produce explanations which are truly ‘grounded’ in the data, but to generate ideas which also have practical relevance. Such theories need to both ‘fit’ the data and ‘work’ (i.e. be applicable to the real world) (Charmaz, 2000). The value of focusing on key caring transitions has been supported by many theorists (Aneshensel et al., 1995; Nolan et al., 1996a) with some authors suggesting that ‘transitions’ should provide one of the main conceptual underpinnings for nursing practice (Meleis, 1997). Clearly, the transition to a care home is a major turning point in caring relationships marking the emergence of new and differing forms of care both for primary carers (spouses in this study) and secondary/new primary carers (children in this study). Recent work suggests that it is not necessarily the amount or type of care that is most predictive of caring stress but rather the number of new roles and adjustments that carers experience in a relatively short period of time (Given et al., 1999). All the informants in both the present and the earlier interviews described many new adjustments and the adoption of several new roles. However, what was relatively absent from any of the accounts was the provision of carefully planned and systematic support from professional staff, either in the community or in the care homes (Lundh et al., 2000; Sandberg et al., 2000). Although this is not an isolated finding (Nolan et al., 1996b) it reaffirms the need for staff to be more proactive
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in this area. However, if practice is to advance it is essential to gain a staff perspective on how they perceive their role within the placement process. This informs the next round of data collection.
Acknowledgements The study received financial support from the Swedish Foundation for Health Care Sciences and Allergy Research, the V(ardal Foundation (V(ardalstiftelsen).
References Aneshensel, C.S., Pearly, L.I., Mullan, J.T., Zarit, S.U., Whitlach, C.J., 1995. Profiles in Caregiving: The Unexpected Career. Academic Press, San Diego. Boaz, R.F., Hu, J., Ye, Y., 1999. The transfer of resources from middle-aged children to functionally limited elderly parents: providing time, giving money, sharing space. Gerontologist 39 (6), 648–657. Bowers, B.J., 1987. Inter-generational caregiving: adult caregivers and their ageing parents. Advances in Nursing Science 9 (2), 20–31. Bowers, B., 1988. Family perceptions of care in nursing home. Gerontologist 30, 212–219. Burholt, V., Wenger, G.C., 1998. Differences over time in older people’s relationships with children and siblings. Ageing and Society 18, 537–562. Cartwright, J.C., Archbold, P.G., Stewart, B.J., Limandri, B., 1994. Enrichment processes in family caregiving to frail elders. Advances in Nursing Science 17 (1), 31–43. Charmaz, K., 2000. Grounded theory: objectivist and constructivist methods. In: Denzin, N.K., Lincoln, Y.S. (Eds.), Handbook of Qualitative Research, 2nd Edition. Sage, Thousand Oaks, pp. 509–535. Friedemann, M.-L., Montgomery, R.J., Rice, C., Farrell, L., 1999. Family involvement in the nursing home. Western Journal of Nursing Research 21 (4), 549–567. Given, C.W., Given, B.A., Stomnel, M., Azzouz, F., 1999. The impact of new demands for assistance on caregiver depressionFtests using an inception cohort. Gerontologist 39 (1), 76–84. Glaser, B.G., Strauss, A.L., 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine, Chicago. Grafstro. m, M., Norberg, A., Winblad, B., 1995. Coping strategies and the experience of burden in the care of a demented parent. Paper presented at the III European Congress of Gerontology, Amsterdam. Harris, P.B., 1998. Listening to caregiving sons: misunderstood realities. The Gerontologist 38 (3), 342–352. Hertzberg, A., Ekman, S.L., 2000. We, not them and us? Views on the relationships and interactions between staff and relatives of older people permanently living in nursing homes. Journal of Advanced Nursing 31, 614–622. Holloway, I., Wheeler, S., 1996. Qualitative Research for Nurses. Blackwell Science, London.
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Horowitz, A., 1985. Sons and daughters as caregivers to older parents: differences in role performance and consequences. Gerontologist 25, 612–617. Jani-le-Bris, H., 1993. Family Care of Dependent Older People in the European Community. EU Publishers, Luxembourg. Jansson, W., Almberg, B., Grafstro. m, M., Winblad, B., 1998. A daughter is a daughter for the whole of her life: a study of daughter’s responsibility for parents with dementia. Health Care in Later Life 3 (4), 272–284. Johnson, C.L., 1995. The parent–child relationship in later life. Paper presented at the Annual Conference American Gerontological Association, Los Angeles, CA. Li, H., Stewart, B.J., Imle, M.A., Archbold, P.G., Felver, L., 2000. Families and hospitalized elders: a typology of family care actions. Research in Nursing and Health 23, 3–16. Lundh, U., Sandberg, J., Nolan, M.R., 2000. I don’t have any other choice: spouses experience of placing a partner in a care home for older people in Sweden. Journal of Advanced Nursing 32 (5), 1178–1186. Meleis, A.I., 1997. Theoretical Nursing: Development and Progress. 3rd Edition, Lippincott, Philadelphia. Mitrini, V.B., Zafa, S.J., 2000. Family based therapy for dementia caregivers: clinical observations. Journal of Aging and Mental Health 4 (3), 200–209. Montgomery, R., Kamo, Y., 1989. Parent care by sons and daughters. In: Mancini, J.A. (Ed.), Aging Parents and Adult Children. Lexington Books, Lexington, MA, pp. 213–230. Morse, J.M., 1994. Emerging from the data: the cognitive processes of analysis in qualitative inquiry. In: Morse, J.M. (Ed.), Critical Issues in Qualitative Research Methods. Sage, Thousand Oaks, pp. 23–43. Nolan, M.R., Grant, G., Keady, J., 1996a. Understanding Family Care. Open University Press, Buckingham. Nolan, M.R., Walker, G., Nolan, J., Poland, F., Curran, M., Kent, B., Williams, S., 1996b. Entry to care: positive choice or fait accompli? Developing a more proactive response to the needs of older people and their carers. Journal of Advanced Nursing 24, 265–274. Nolan, M.R., Dellasega, C., 1999. It’s not the same as being at home: creating caring partnerships following nursing home placement. Journal of Clinical Nursing 8, 723–730. Nolan, M.R., Dellasega, C., 2000. I really feel I’ve let him down: supporting family carers during long-term care placement for elders. Journal of Advanced Nursing 31 (4), 759–767. Qualls, S.H., 2000. Therapy with aging families: rationale, opportunities and challenges. Aging and Mental Health 4 (3), 191–199. Qualls, S.H., Zarit, Z.H., 2000. Family based therapy for dementia caregivers: clinical observations. Journal of Aging and Mental Health 4 (3), 200–209. Sandberg, J., Lundh, U., Nolan, M.R., 2000. Placing a spouse in a care-home: the importance of keeping. Seminar presented at the University of Linko. ping, Sweden, May 2000. Seale, C., 1996. Living alone towards the end of life. Aging and Society 16 (1), 75–91. . del utv.ardering 96:5. Nya Socialstyrelsen, 1996. A fo. rutsattningar, b.attre incitamentFho. gre effektivitetr efter . del? Socialstyrelsen, Stockholm. A
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Moving into a care home: the role of adult children in the placement process Jonas Sandberga,*, Ulla Lundhb,c, Mike Noland Department of Neuroscience and Locomotion, Division of Geriatrics, Faculty of Health Sciences, Linko.ping University, S-581-85 Linko.ping, Sweden b Department of Medicine and Care Division of Nursing Science, Linko.ping University, Sweden c Department of Nursing Science, University College of Health Sciences, Jo.nko.ping, Sweden d School of Nursing and Midwifery, University of Sheffield, Samuel Fox House, Northern General Hospital, Herries Road, Sheffield, S5 7AU, UK a
Received 2 January 2001; accepted 10 January 2001
Abstract Admission of an older person to a care home is widely recognised as a very stressful period for the family and one which, despite community care policy, is likely to be an increasingly common experience. Although there is a growing research base in this area, there have been few studies on the role of adult children in supporting their parents during this difficult transition. This paper reports on the third stage of a grounded theory study conducted in Sweden which explored the part played by adult children in the placement process. Data were collected from 13 adult children using in-depth semi-structured interviews and the results are compared with themes previously derived from interviews with 26 spouse carers. The analysis reveals important overlaps and differences and suggests the need for further research exploring the dynamics of the placement process. r 2002 Elsevier Science Ltd. All rights reserved. Keywords: Care homes; Placement; Spouse carers; Adult children; Grounded theory
1. Introduction Until recently, the support needs of frail older people in Sweden have been met primarily by the state, with there being little expectation that the family would provide care. This situation is now changing with increasing emphasis being placed on the role of the family (Socialstyrelsen, 1998), with the state recognising the importance of providing family carers with appropriate services and information (SOU, 1999). In Sweden, it is not the cultural norm for ageing parents to move in with their children and therefore the majority of resident carers are spouses. In situations where spouses can no longer care, or no spouse is available, then other options such as care homes (a generic term including nursing *Corresponding author. Tel.: +46-13-221-782. E-mail address: [email protected] (J. Sandberg).
homes, sheltered housing and group homes) provide alternatives to in-home care. Therefore, although the majority of older people in Sweden live in their own homes, about 20% of those aged 80–89 live in a care home, with this figure rising to 50% at 90 (Socialstyrelsen, 1996). Care homes in Sweden have generally been highly regarded and admission has not usually been associated with the negative images prevalent in many other parts of Europe (Jani-le-Bris, 1993; Victor, 1997). Over the past few years, however, concern over the standards of care in care homes has increased and it is therefore, important that family members are supported in the placement process if stress is to be reduced and subsequent adjustment improved (Lundh et al., 2000; Nolan and Dellasega, 1999, 2000). However, because of the previously unproblematic nature of placement in Sweden, few studies have considered this issue (Hertzberg and Ekman, 2000). This paper reports on the third
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phase of a grounded theory study exploring the experience of placing a spouse in a care home from the perspectives of all the major actors involved. The first two phases gathered data from spouses who had recently placed a partner in a care home (Lundh et al., 2000; Sandberg et al., 2000), and these data highlighted the important, but relatively unexplored, role of children as secondary (or occasionally primary) decision-makers. The aim of the third phase, on which this paper is based, was to gain the perceptions of the children themselves in order to understand the role that they play more fully. The paper begins with a brief consideration of the appropriate literature, the methods used in the present study, and the relevant results from the first two phases.
2. Background and method Adult children are key supporters of frail older people (Johnson, 1995; Grafstro. m et al., 1995) with the provision of instrumental support increasing as their parent’s age (Burholt and Wenger, 1998) to the extent that it often impinges on the child’s ability to sustain their own career (Boaz et al., 1999). Moreover, in addition to direct help adult children also engage in a range of differing types of care providing supervision and support intended to maintain the dignity and selfesteem of their parents (Bowers, 1987; Nolan et al., 1996a). There are often gender differences in the types of help given (Grafstro. m et al., 1995) with sons tending to provide less direct care but often providing financial and emotional support (Horowitz, 1985; Montgomery and Kamo, 1989). Children of both genders can also play an important part in making key decisions about future care, often taking a lead role (Harris, 1998). Moreover, the involvement of children continues after the placement of a parent in a care home, with daughters in particular continuing to provide direct care (Friedemann et al., 1999), a finding consistent with recent studies in Sweden (Jansson et al., 1998). In addition, children provide an important link between the parent and the wider society (Li et al., 2000), while also working to maintain ‘family connectedness’ (Bowers, 1988). However, most of the available literature relates to children who occupy primary caregiving roles and rather less is known about the secondary support that children may give to a parent providing care to a spouse. Gaining a better insight into this secondary caring role was the aim of the interviews upon which this paper is based. It forms part of a larger study exploring the experiences of placing a spouse in a care home in Sweden (Lundh et al., 2000; Sandberg et al., 2000). The study adopted a grounded theory approach in an effort to not only understand the placement process but also to develop a theory with practical application. Charmaz (2000) argues that the canons of good grounded theory,
namely, fit, work, relevance and modifiability make it particularly suited to studies which aim to enhance understanding of the empirical world while also resulting in theories relevant to ‘real life’ situations. Grounded theory is a general methodology which is inherently neither qualitative or quantitative (Glaser and Strauss, 1967), however, the majority of its applications have been qualitative in nature and due to the limited previous work in the substantive area of interest a qualitative model was adopted for the present study. In the first two phases of the study, data were gathered from 26 spouse carers using in-depth semi-structured interviews on their experience of the placement process (Lundh et al., 2000; Sandberg et al., 2000). Using a theoretical sample and a constant comparative method, data were analysed using a combination of open and axial coding (Strauss and Corbin, 1994). Based on the first 14 interviews, an understanding of placement as a temporal experience emerged comprising four overlapping phases (Lundh et al., 2000). * * * *
Making the decision Making the move Adjusting to the move Reorientation to life
For spouses, the placement process was a highly emotional experience, particularly their separation from an often life-long partner. Spouses were largely unprepared for the extent of the loss they felt and although children and others were supportive at this time, the help provided was often of a practical rather than an emotional nature. After the placement, spouses worked hard to maintain the identity of their partner, seeking continuity in their relationships. Subsequently, a second round of interviews was undertaken with 12 spouses in order to explore the process of separation and their efforts to maintain relationships in more detail (Sandberg et al., 2000). These data suggested that the process of ‘separation’ was not a discrete event but rather one which involved physical, emotional and psychological components. However, there was often very limited dialogue between spouses and an absence of full and frank discussion, frequently heightening a sense of betrayal felt by some spouses who were placing their partner in care. However, the community dwelling spouse often ‘put on a brave face’ for the sake of their partner and consequently did not reveal the true extent and depth of their emotions. Some did ‘seek solace’ with children, friends or professionals and when this was handled sensitively it was considered to be of great benefit. This was not the norm though and most of the help that spouses received at this time was of a practical or instrumental nature.
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Following placement ‘keeping’ emerged as a key activity explaining spouses’ efforts to maintain their relationship with their partner, while also forging new roles for themselves as carers, particularly in their interactions with staff in care homes (Sandberg et al., 2000). This ‘keeping’ took a variety of forms: *
*
*
Keeping it goingFefforts to maintain their relationship with their spouse. Keeping it specialFefforts to retain valued aspects of their relationships that marked it out as unique. Keeping an eyeFon staff activity and the quality of care given to their spouse.
In terms of their relationships with the staff, differing forms of keeping also emerged. These were: *
*
*
*
Keeping your distanceFminimal involvement with the staff. Keeping quietFspouses were often concerned over the quality of care given to their partner but did not wish to ‘rock the boat’. Keep on tryingFspouses continued efforts to improve the quality of care by interacting with the staff. Keeping things closeFthis was apparent when spouses had good relationships with the staff and worked to keep them this way.
From the 26 initial interviews two key processes in support of the placement process emerged and were termed ‘preparation for separation’, that is, efforts to better prepare spouses for the impact of separation from their partner and ‘preparation for integration’, that is, efforts to assist spouses in maintaining their relationship with their partner while also forging new roles and relationships with the staff. At various points in these initial interviews, children were described as playing an important role both prior to, and following, admission and it was apparent that a full appreciation of the placement process would not emerge until the role of children was better understood. That was the purpose of the interviews reported in this paper.
3. Data collection and analysis A purposive sampling method was used to select children who had been involved in supporting a parent who had placed a partner in a care home within the previous 12 months. Potential informants were identified with the help of the Local Authority Social Services Department in two municipalities in Southern Sweden. A letter providing details of the study together with a form signalling an interest in taking part were sent to 27 individuals and those who returned the form were contacted via the telephone for a further discussion of the project.
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On this basis, 13 children (11 daughters and 2 sons) agreed to be interviewed. Interviews took place in their own homes and were semi-structured in nature using an interview guide that allowed for an element of consistency but also permitted individuals to explore further issues that they considered to be particularly important (Holloway and Wheeler, 1996). Interviews lasted between half an hour to an hour and a half and with permission were tape-recorded for later transcription and analysis. The interview guide focused not only on the children’s experience of the placement but also explained their caring role with respect to their parent and, in addition, the impact that the placement had on the informants as individuals. Interviews of this nature are sensitive and care was taken to ensure that ethical considerations were met. Prior to the study, approval was given by the ethical committee at Linko. ping University and informants were assured of anonymity and confidentiality. It was also made clear that informants could withdraw from the study at any point during the interview. In the event, although some children found recounting their experience an emotional event, none wished to withdraw and indeed, it seemed that the interview was often a cathartic process which allowed informants to talk of their feelings with a neutral but interested and empathetic third party. Following the interviews, the lead author made initial notes immediately afterwards and data were transcribed as soon as possible. As Charmaz (2000) notes, in grounded theory analysis ‘begins early’ through preliminary coding and the assignment of codes to categories. This is an interactive and iterative process. This initial or open coding proceeds in a line by line fashion which helps build ideas but guards against imposing theories on the data too early. It also familiarises the analyst with the data facilitating constant comparison and identification of ‘sensitising concepts’ (Charmaz, 2000) or ‘local concepts’ (Glaser and Strauss, 1967) that guide but do not direct subsequent analysis (Morse, 1994). In the present context, these concepts included those that had emerged from the initial two phases of interviews, particularly the notions of ‘preparation for separation’ (Lundh et al., 2000) and ‘preparation for integration’ (Sandberg et al., 2000), in relation to the temporal sequencing of the placement in terms of making the decision, making the move, and adjusting to the move. The generation of codes facilitates the comparison of data which is ‘a major technique in ground theory’ (Charmaz, 2000). Subsequently, ‘selective’ or ‘focused’ coding uses the initial codes that appear frequently or make a significant contribution to understanding, to help organise larger volumes of data. This, according to Charmaz (2000), is a more conceptual process than line by line coding and leads to categories which account for
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most of the data. These categories allow for the synthesis of the data (Morse, 1994) aiding ultimate theorisation. The process of analysis in the present study was greatly facilitated by memo writing which identified the links between codes, categories and the emergent theory, thereby making more explicit the ‘processes, assumptions and actions’ subsumed in the analysis (Charmaz, 2000). As noted above, in the present analysis, attention was given to the temporal sequencing of the placement process and this provided a loose cognitive structure helping to integrate the data into a more coherent whole.
4. Results As a result of the analysis it appeared that children fulfilled a number of roles, influenced largely by the degree to which they took a lead in the decision-making process. Following the placement, children also sought to engage both with the spouse remaining in the community and the one who had been admitted to the care home. The results of the analysis are presented below, initially following the above temporal sequence, beginning with the children’s role in making the decision.
6. Allowing Some informants felt strongly that decisions about such a major life event as placement in a care home had to be taken primarily by their parents. Therefore, while they tried to take all available opportunities to ‘allow’ discussion to occur, they mainly waited until their parents had reached the initial decision about the possibility of placement themselves. However, as with the data from the earlier interviews undertaken with the spouse, carers’ full and frank discussion involving both parents was rare. Rather it was usually the caregiving spouse who took the lead, with children trying to create an atmosphere within which their parents could at least discuss the idea in a sympathetic context: ‘Well... we tried to discuss things at times... we did, but it had to be her choice... she had to take the decisiony’ Subsequently, once the initial decision had been taken, children were very supportive and often, then took a more active role in the process of selecting a home and organising the move. We have termed this ‘advocating’ and it involved children working with, or for, their parents to ensure that the rest of the placement process ran as smoothly as possible. This often involved convincing the key decision-makers in the municipality that placement was an appropriate way forward:
5. Making the decision Although, as will become apparent, children played a variety of roles throughout the placement process, their involvement in making the decision was motivated largely by a realisation that for one parent the caregiving role was becoming too difficult or burdensome. Children often seemed to appreciate this before their caregiving parent and consequently grew increasingly concerned at the effects of caring that they perceived to be having on their parent’s health: ‘She refused to see... there were so many feelings involved... so she refused to see... that he needed help.’ Children often felt that due to the close bonds between their parents, neither spouse wished to raise the prospect of other potential caring arrangements and in such cases, children often acted as the catalyst for beginning the placement process. However, while all the informants played some role in making the decision, the degree to which they were directive or not varied and could be divided into three main categories as follows: * * *
Allowing Initiating Pushing
‘We really pushed them (the staff) we knew that he (father) didn’t have the strength to carry ony’ Once the decision-makers had been convinced (usually the home care organiser), then children also worked to ensure that a suitable home was selected, one with a good reputation in a locality which was conveniently located for their parent to visit. Although the advocating role was often undertaken primarily by one child, in cases where there were several children then siblings would sometimes work together in a collaborative way, each taking on differing roles in facilitating the placement process.
7. Initiating As the name suggests, initiating involved a more proactive role for children, in which the initial idea for placement was raised by the child his/herself. Once again, informants were motivated by their concerns for the caregiving spouse’s health and the demands made by the need to deliver the type of care that the cared-for parent required. In these instances, informants were sensitive to the fact that the care-giving parent was reluctant to initiate the placement of process and so they
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took the lead with the aim of reducing subsequent negative emotions that might be experienced: ‘I think that she felt good that I took this responsibility... because she had a very bad conscience... because she didn’t have the strength to carry ony’ ‘y the decision was very hard to take and mum cried a lot... she wanted to carry on... but as a daughter, and with my experience of working with older people, I understood that she couldn’t manage... so I very much took control over thisy’ Interestingly, although children acted to try and reduce the guilt experienced by the caregiver parent, their own more active role exposed them to similar feelings, leaving them to question whether more could not have been done to prevent the placement: ‘... but you wonder... are we doing this too early... is she really that bad...?’ Some informants even considered the prospect of their parents moving in with them, a rare situation in Sweden: ‘I would really have liked to have him in my house (father) but this is not a good idea when you are married... it wouldn’t have worked I don’t think.’
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However, as will be highlighted shortly in relation to ‘making the move’, while children may have recognised the emotional conflict that their parents were experiencing, and indeed often tried to relieve them of it by taking responsibility themselves, they were reluctant to directly address and discuss the emotional impact of the move with either parent. ‘Pushing’, as with allowing and initiating, can be seen as points along a continuum with the motivation for children’s involvement in the placement process being a concern for the fragility of the caregiving situation and the perceived inability of the caregiving parent to deliver the care required, without further detriment to their health. Occasionally, however, when the child him/ herself took a more direct and active role in supporting both parents, then their own failing health was also a factor in the decision-making process: ‘I had an operation on my foot in 1996 and I was unable to help themy couldn’t shop for themy, in fact couldn’t do anything to support themy’ This latter scenario provides an interesting example highlighting the often complex and subtle caregiving arrangements that support frail older people at home. The role of children as secondary caregivers is an issue that will be returned to later.
9. Making the move 8. Pushing ‘Pushing’ describes the most active role in which children not only took a lead in organising the move to the care home but importantly ‘pushed’ the initial decision. Once again the motivation for this appeared altruistic, with the best interests of both parents being uppermost in informant’s minds. As with all the cases, children were concerned about the increasing toll that caregiving was taking on the spouse carers health but also recognised that unless they took a firm stance that the issue of placement would not be raised: ‘...we pushed quite hard as children... She (mother) felt that she had to take care of dad... that it was her calling, or something like that...’
After the decision to seek placement had been made and children had ‘advocated’ for their parents in finding the most suitable home their role in making the actual move was confined primarily to practical/instrumental aspects, with little explicit focus on the emotional impact of separation. Informants said that they were aware of their parent’s feelings but did not discuss them, preferring instead to ensure that the move proceeded with as little disruption as possible: ‘ywe (the children) carried it (the move) out... you can say partly... against mum’s feelings... maybe not intellectually but against her feelings... but of course she showed us gratitude for dealing with all the practical partsy’
Informants expressed their reluctance to force issues but considered that they had no other choice. However, they recognised that it was often a difficult time for the caregiving parent and also therefore tried to help as much as possible:
The practical aspects involved such things as arranging for the removal of furniture and personal belongings to the care home and even to decorating the room. However, the sub-text was still one of concern for the community-dwelling parent, tinged with a sense of relief for the children as their own concerns had been lessened:
‘It was very tough for her (mother), she was very sad about the placement so we tried to help and be practicaly’
‘I felt relievedy reallyy because I thought a lot about mum who had struggled for so longy I mean she was worn outy I could see thaty her body
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couldn’t take anymorey she is 70y no way does she have the strength.’
10. Adjusting to the move Adjusting to the move refers to the events that unfolded after the placement occurred and, as noted earlier, for spouses this consisted of two major activities. The first related to their efforts to sustain their relationship with their partner and to maintain their identity as a couple. The second focus of effort was the need to establish new roles and relationships with the staff in the home. As described briefly earlier, the basic process involved here was that of ‘keeping’. It is therefore, very interesting that whilst there were similarities between the ways in which spouses and children ‘adjusted to the move’ there were also fundamental differences. Foremost amongst these was the fact that children no longer seemed to view their parents as a couple but rather interacted with the parent in the community and the parent in the care home in quite distinct ways.
11. Supporting the parent in the community For some children, the experience of a shared placement had brought them closer to their parent, providing new perspectives on their relationship: ‘Well, we have become more... open with each other and have reshaped the way we see ourselves I think.’ Additionally, however, children now often found themselves facing a dilemma, wishing to provide extra support for their parent in the community but at the same time not wanting to reduce their independence nor to compromise their relationships with their own family. In response to this dilemma, children tended to assume increased responsibility for some roles previously undertaken by the parent now in care whilst at the same time ‘keeping an eye’ on the parent in the community to see that they were coping adequately. For the most part, additional responsibilities related mainly to dealing with financial matters, particularly when a father had been admitted to care and the mother had little experience of dealing with money: ‘y and from that moment (admission) I have taken over responsibility for the financesy’ There was also a continuation of the advocacy role whereby children assisted their parents in their dealings with the authorities. Other more practical manifestations of assuming new responsibility occurred when
children assisted with gender specific tasks such as heavy domestic work, for example, gardening and decorating when a father had been admitted to care, or other domestic work, for example, cooking and washing when a mother had been admitted. Such activities were overt and acknowledged both by the parent living in the community and the child. The ‘keeping an eye’ activities were more subtle and usually involved efforts to keep the parent engaged with life and to maintain their self-esteem: ‘yhe’s so lonely but he doesn’t seek contact... no he doesn’t... so he spends a lot of his time with usy’ This often involved inviting the parent over to dinner or to enjoy family events. For those children who lived at a greater distance, telephone contact tended to increase. Once again, however, tensions were apparent with children not wishing to ‘take over’ too much control nor to let their new responsibilities sour their relationships within their own family: ‘I try to be there as much as I can, but I have my life as well.’ Balancing these two sets of demands often required a delicate set of interactions so that the needs of all those involved could be met.
12. Supporting the parent in the care home Children generally had far fewer concerns than spouses about the instrumental care of their parent in the care home and were usually quite happy to delegate this to the staff. Nevertheless, they still ‘kept an eye’ on the care delivered in ways similar to those described by the spouses in the earlier interviews. This ‘keeping an eye’ might involve direct observation during visiting as well as frequent contact with staff over the telephone. In cases where children were unhappy with the care they would sometimes get involved in direct care delivery, but not to the extent described by their parents. Occasionally they wanted to directly confront the staff with their concerns but were stopped from doing so by their community-dwelling parent: ‘yand my mother is very anxious if I do this (want to raise concerns with staff) because she believes that dad will get a telling off if I doy’ This resulted in children being ever more vigilant in ‘keeping an eye’ on things: ‘yand then I have to check... since the care is that bad I have to check... not that I sneak around, but you knowy’
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Sources of concern often related to aspects of personal care such as washing, bathing and hygiene or to failure by the staff to consider the individual preferences of parents or to recognise features that helped to mark the parent out as a unique individual. As with the spouse interview, another area in which children took an active role was in seeking to help keep their parent ‘in touch’, particularly with the wider family, and especially grandchildren: ‘I talk a lot about things, mostly the children and what they are doing and so on.’ Children often coordinated their visits with the parent living in the community so that the parent in care would have visitors interspersed throughout the week: ‘We visit him at different times... mum visits him during the week, but she finds it difficult to come here at weekendsy we therefore visit more at the weekendsy’ Often such visits went beyond simply keeping the parent in touch with the wider family and efforts were also made to enrich and enhance their life. During the initial interviews with spouses many described how they tried to keep their relationship ‘special’ by ensuring that cherished routines were maintained. Similar activities and motives emerged from the interviews with children. However, these involved efforts to ‘make it special’ rather than to ‘keep it special’. In other words, rather than drawing on established and previously shared routines, as did spouses, children sought to introduce new activities or events that would make their parent in care feel special and highlight their individuality to the staff. Examples of this included ensuring that members of the family, especially grandchildren, of whom their parent was proud visited the home. For instance, one grandchild who was a military officer often visited in his uniform: ‘y his grandpa’s jewel and he’s also a military officer and when he visits in his uniform... well grandpa feels so special and its something extray’ Other tactics involved maintaining the special skills and abilities of their parent while also making other residents and staff aware of these. For example, one mother had a unique recipe for Swedish cheesecake (families tend to have their own cherished recipes for this Swedish delicacy) that she had given to her daughter. Her daughter therefore arranged for her mother to help bake enough cheesecake for all the residents and staff at the home: ‘yand we had the whole kitchen filled with older people... and almost all of them had done this (baked cheesecake to their own recipe) in the past and we all
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talked and reminiscedy it was really something specialy’ As important as the above activities were a number of children also tried to ‘make it special’ in a more fundamental way. This concerned their relationship with the parent in care. All the children were naturally aware of the increasing frailty of their parents but the admission process had brought home to many just how frail one parent had become. This caused them to reflect upon the nature of their past and present relationship with their parent, and fuelled a desire to re-establish or establish good relationships before it was too late: ‘Damn, I think I have missed out a lot by not asking him for help while there was still timey I’m sure that he would havey given me a lot if I’d let himy’ Interestingly, for some informants the fact that their parents no longer lived together provided opportunities for them to get to know their parents in differing ways: ‘I try to visit dad very often... when mum’s not around because I get a better relationship with dad then. Mum is quite dominanty’ Although such a reaction was uncommon, it nevertheless highlights the often subtle, complex and delicate relationship that characterise family care. Indeed, the data from the interviews with children reinforce the diverse, sometimes implicit, and occasionally poorly developed channels of communication that are involved in major life decisions, such as admission to a care home.
13. Discussion The primary purpose of the present study is to develop a grounded theory of the placement of a spouse in care that captures the temporal nature of this experience and also reflects the perspectives of several of the major actors involved. Consistent with a grounded theory approach, the major actors were not determined in advance but rather identified on the basis of the two sets of interviews undertaken with spouses who had recently placed a partner in care. Children emerged as exerting an important influence in many of these interviews. Due to the cultural norms in Sweden ageing parents rarely move in with their adult children but children often play a significant role either in supporting one parent caring for another or care ‘at a distance’ for parents who live alone. As noted earlier, although there have been several studies that have considered the role of children as primary or main carers (whether or not their parents live with them), very few have looked at children as secondary carers supporting the main carer in important decisions such as care home placement.
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This is typical of caregiving research more generally where the focus has been mostly on the caregiving dyad (cared-for person and primary carer) (Qualls and Zarit, 2000; Qualls, 2000; Mitrini and Zafa, 2000). Recently, there have been calls to consider more carefully the role of the family as a whole (Qualls and Zarit, 2000) and in particular the rules and norms that govern family-life and decision-making, especially during major transitions (Qualls, 2000). It is suggested that families cope better when beliefs and value systems are shared and rules and boundaries are clear and agreed (Qualls, 2000). Family communication models, levels of attachment and problem-solving skills are therefore seen as being particularly important. The interviews in the present study were conducted with children who were initially secondary caregivers but who, during the process of placing one parent in care, moved into roles more akin to those of primary caregivers, especially for the parent who remained in the community. From a temporal perspective varying roles in the decision to seek care emerged, exhibiting differing levels of direct intervention from allowing to forcing. What was apparent, however, was that although children were aware of the difficult emotions that their parents experienced, they focused mainly on the practical aspects of the move. In contrast to their parents who worked hard to maintain their status as a couple following placement, children seemed to adopt two quite distinct roles, one with the parent living in the community and the other with the parent living in the home. In the former case, children tended to take over responsibility for certain care tasks (e.g. finances or domestic help) while also increasing levels of surveillance. These are characteristic of the supervisory and instrumental care described by Bowers (1987) suggesting that children were now moving into the role of primary carers. Informants recognised the tensions this created in wishing simultaneously to support their parent, while not making them too dependent nor becoming too engulfed in care themselves. This sort of delicate balancing act has been described by Seale (1996) and is a dynamic that requires further exploration, especially in the post-placement period. With respect to the parent in care, children also described the ‘keeping an eye’ and ‘keeping in touch’ activities seen as important by spouses but in addition children wished to ‘make it special’ for their parent by highlighting their individuality and improving their quality of life. This reinforces the role of biographical information and the ‘preservative’ care previously described by Bowers (1988) and affirms the importance of ‘enriching’ activities outlined by Cartwright et al. (1994). However, the value of enriching activities have not previously been described in the context of a care home. Once again this is an area in which there is a need
for further research. In addition to enriching their parent’s life, children also wished to make their relationship with the parent special, realising the limited time they might have to do so in the future. Three things in particular emerge as striking from the present data. Firstly, both in the present interviews, and the earlier ones with spouses, there was very little evidence of direct involvement of the spouse who was being admitted to care. Although in some instances this was due to cognitive frailty, this does not account for all cases. Secondly, there was limited recognition given to the emotional impact on the spouse carer of the admission of their partner to care, something previously highlighted as a lack of ‘preparation for separation’ (Lundh et al., 2000). Thirdly, there is the contrast between spouses’ efforts to maintain their identity as a ‘couple’, and the tendency amongst children to see their parents almost as separate entities. These findings suggest that the shared and explicit value systems and boundaries advocated by Qualls (2000) are not necessarily the norm, especially during difficult transitions such as that into a care home. Theories to better understand this process are therefore all the more important.
14. Conclusions One of the important characteristics of grounded theory is the desire not only to produce explanations which are truly ‘grounded’ in the data, but to generate ideas which also have practical relevance. Such theories need to both ‘fit’ the data and ‘work’ (i.e. be applicable to the real world) (Charmaz, 2000). The value of focusing on key caring transitions has been supported by many theorists (Aneshensel et al., 1995; Nolan et al., 1996a) with some authors suggesting that ‘transitions’ should provide one of the main conceptual underpinnings for nursing practice (Meleis, 1997). Clearly, the transition to a care home is a major turning point in caring relationships marking the emergence of new and differing forms of care both for primary carers (spouses in this study) and secondary/new primary carers (children in this study). Recent work suggests that it is not necessarily the amount or type of care that is most predictive of caring stress but rather the number of new roles and adjustments that carers experience in a relatively short period of time (Given et al., 1999). All the informants in both the present and the earlier interviews described many new adjustments and the adoption of several new roles. However, what was relatively absent from any of the accounts was the provision of carefully planned and systematic support from professional staff, either in the community or in the care homes (Lundh et al., 2000; Sandberg et al., 2000). Although this is not an isolated finding (Nolan et al., 1996b) it reaffirms the need for staff to be more proactive
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in this area. However, if practice is to advance it is essential to gain a staff perspective on how they perceive their role within the placement process. This informs the next round of data collection.
Acknowledgements The study received financial support from the Swedish Foundation for Health Care Sciences and Allergy Research, the V(ardal Foundation (V(ardalstiftelsen).
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