This paper reviews literature on the experiences of family carers when a relative goes into long-term care, with the aim of informing nurses how to provide support in this phase.This paper reviews literature on the experiences of family carers when a relative goes into long-term care, with the aim of informing nurses how to provide support in this phase.
Keywords: Older people, family carers, long-term care
Author Paula Edge, BSc, RN, is clinical nurse manager, Risedale Retirement and Nursing Homes.
Abstract Edge, P. (2007) Carers’ needs when relatives go into a care home.
AIM This paper reviews literature on the experiences of family carers when a relative goes into long-term care, with the aim of informing nurses how to provide support in this phase.
BACKGROUND Little research has been carried out on the needs of family carers when relatives move into long-term care, although carer organisations highlight gaps between policy and practice in relation to information-giving and involvement. Understanding the barriers to involvement enables nurses to develop strategies to improve carer involvement.
METHOD Qualitative literature was analysed using a framework for critical assessment of research within the naturalist paradigm. RESULTS: Nurses fail to recognise family carers’ expert knowledge and skills about their cared-for relative. Families perceive that their loved one’s values, beliefs and life history are ignored.
CONCLUSION This article highlights the need for nurses to challenge barriers to communication, moving away from paternalistic and ritualised care practice.
Approximately 410,000 older people live in care homes in the UK (Office of Fair Trading, 2005). The decision to admit an older relative into long-term care can be devastating for both the older person and their loved ones (Clarke and Bright, 2006; Ryan and Scullion, 2000). For most families, uncertainty about the future triggers emotional turmoil and raises practical and financial issues (Green, 1999), with family carers often involved in helping with decisions, finding a suitable home and helping their relative to settle in (Davies, 2005).
Family caring is recognised as a critical component of nursing older people (Kellett, 1998), yet the literature suggests that admission into long-term care rarely takes into account family members’ needs (Friedmann et al, 1999; Nay, 1997; Ritchie and Ledesert, 1992). The challenge for nurses is to understand transition processes and develop interventions to help families regain stability and a sense of well-being (Davies, 2005).
Caring appears to be difficult to define, with definitions often explicitly instrumental, overlooking carers’ psychosocial needs. Dalley (1996) says that the essence of care-giving is often referred to as being task-orientated, such as bathing and dressing. According to Nolan (1994), this fails to acknowledge the reciprocal nature of caring and the carer’s needs for information, skills training and emotional support.
In many care settings, family carers’ needs are invisible (Bowers, 1987) as they no longer meet the standard definition of a carer. Professionals often view carers’ sole purpose as providing demographic and medical history or consenting to the occasional nursing procedure (Fazio et al, 1999).
This literature review explored the experiences of family carers when an older relative enters long-term care in order to further develop humanistic nursing, whereby the older person’s world view is considered (Ford and McCormack, 2000).
Admission into long-term care is generally regarded as marking an end to the role of the family carer and the beginning of institutionalisation (Davies, 2005; Dellasega and Mastrian, 1995). After what is often years spent caring for their loved one, family carers are perceived as visitors (Buckwalter and Hall, 1987). Most studies on entry to long-term care have concentrated on the needs of residents and staff (Davies and Nolan, 2004).
This article reviews relevant literature by asking: ‘How can nurses assist and support relatives/carers when a loved one makes the transition into a care home?’ The studies were analysed using a critical assessment tool for studies undertaken within the naturalist paradigm (Forchuk and Roberts, 1993).
Synergie, Ovid, PsychINFO, Academic Search Premier, the Cochrane Library and Google Scholar were searched, while organisations relating to the needs of carers were approached for information. The Relatives and Residents Association newsletter was chosen as it was most relevant to this study. As the literature revealed studies built on earlier studies, a manual search was undertaken to identify these to add a historical perspective.
The key words relative, carer, transition, experience and care home yielded 183 relevant articles. A review of the titles and abstracts reduced this to 18. Three papers were retrieved from the Cochrane Library, but these were not relevant to the review question and were eliminated. A manual search identified four studies, but time constraints prevented an in-depth manual search of potentially relevant literature. Ten articles were selected, supplemented with research undertaken by the Relatives and Residents Association.
English language articles from 1990 to June 2006 that explicitly related to relatives’ experiences prior to, during and after placement in long-term care were considered, as were studies focusing on staff/relatives relationships (Table 1). Any adult relative or partner of the older person was included, with no exclusion applied to sexual orientation or ethnic origin.
Prior to admission
Transitional processes preceding placements are filled with difficult emotional experiences for family carers as they come to terms with this major life event. Several studies identified varying reasons for admission including inability to cope, exhaustion and acute illness (Pearson et al, 2004; Lundh, et al, 2000; Ryan and Scullion, 2000; Kellett, 1999a).
In a cross-sectional study comparing carers in the US (n=54) and the UK (n=48) found that almost half of the UK carers (n=23) gave their own failing health, family life or employment as reasons for their relative’s admission to care (Dellasega and Nolan, 1997). Semi-structured interviews with spouses (n=14) by Lundh et al (2000) found that the caring role had caused the majority (n=11) considerable distress and exhaustion.
Findings also illuminated other issues surrounding the pre-admission phase including inadequate family support (Pearson et al, 2004), and feelings of letting their relative down (Lundh et al, 2000), with the cognitive process of separation commencing at the decision-making phase (Sandberg et al, 2001). Hasty decision-making, lack of information and professional support were also described (Lundh et al, 2000; Dellasega and Nolan, 1997). All family carers interviewed by Ryan and Scullion (2000) (n=10) stated the main reason for admission was deterioration in their relative’s health, although some reported a deterioration in their own health due to their caring role (n=3).
US data reported the main difficulty associated with placement was accepting the need for the relative to enter care, especially the prospect of giving up the caring role (Dellasega and Nolan, 1997). However, this study reported that carers in the US (n=10) and UK (n=9) experienced positive feelings regarding the placement, which were linked to their relative being happy with the move, or there being no real alternative.
A grounded theory study exploring adult children’s experiences (Sandberg et al, 2002) used a sample of 11 daughters and two sons, and built on the findings of Lundh et al (2000), who focused on spouses’ experiences. Interestingly, differences in the findings emerged according to relationship to the cared for person regarding their pre-placement decisions.
Sandberg et al (2002) reported that decisions for admission were motivated by the realisation that care-giving was too difficult or burdensome, with adult children often initiating the placement, while Lundh et al (2000) reported several cases where spouses carried on caring until they became exhausted, with the decision for placement being initiated by professionals or adult children.
Clarke and Bright (2006) carried out a major study in conjunction with the Department of Health for the Relatives and Residents Association, using questionnaires, interviews and focus groups. They found that adult children were able to sustain and even improve their relationships with one or both parents following care placement. However, spouses’ relationships often deteriorated with the feeling of losing a lifelong partner and no longer living as husband and wife.
Lundh et al (2000) argued that spouses’ feelings of loneliness and loss of partnership were predominantly due to professionals’ failure to recognise the emotional consequences of a transition into care. They named this theme preparation for separation. Their sample was predominantly female, so not representative of both genders.
The literature rarely cited positive feelings related to the decision for care. However, Dellasega and Nolan (1997) reported that over 90% of carers reported relief in knowing their relative was receiving 24-hour care in a place of safety. The US sample cited other benefits such as socialisation and specialist therapies; however, this did not emerge in the UK data.
Adjustment and role redefinition
Many issues arose for carers after placement, with diverse findings relating to continuation of the caring role and readjustment. Davies and Nolan (2006) used semi-structured interviews (n=37) to provide narratives of the family carers’ (n=48) experiences post placement (11 interviews involved two carers from the same family). Three key themes emerged, which appear throughout the literature reviewed:
Keeping an eye;
Contributing to community.
This reflects carers’ wish to continue replicating routines and practices they engaged in while their relative lived at home, and emerged in several studies. Kellett (1999b) reported that carers placed great importance on continuing activities their relative enjoyed, ensuring particular likes and dislikes were prioritised (Sandberg et al, 2001). One family carer strove to hold on to ‘doing what we’ve always done’ (Davies and Nolan, 2006), seeing this as an important aspect of the transition into care. For some spouse carers, continuity focused on maintaining as near a normal relationship as possible. This helped ease their loss and separation, maintaining a need to remain actively involved (Sandberg et al, 2001).
Hertzberg et al (2001) interviewed a sample of female (n=15) and male (n=13) carers and found that, despite persistent involvement, they felt they had minimal effect in bringing about changes for their relative, leading to uncertainty and frustration. Attempts to maintain continuity were often not facilitated or were even blocked by staff (Lundh et al, 2000), with some carers stating that preserving care provided possibilities to reconstruct a positive self-image by making a useful contribution (Kellett 1999b). Informants often felt that staff did not listen as they tried to influence and contribute to care (Hertzberg et al, 2001; Lundh et al, 2000).
Relaying this specialist family carer knowledge about their relative to staff appeared consistently throughout the studies. Knowledge of family, life history, values, desires and expectations enabled family members to re-define their role in this new context (Davies and Nolan, 2006; Kellett 1999b). Adult children found continuity in maintaining their relative’s specialist skills and abilities and making other staff and residents aware of these (Davies and Nolan, 2006; Hertzberg et al, 2001; Lundh et al, 2000; Kellett, 1999a; 1999b). They also found it important to introduce new activities highlighting their individuality to others (Sandberg et al, 2002). Spouses, in contrast, found it more pertinent to draw on established and previously shared routines (Lundh et al, 2000).
One study highlighted the frustration of one female carer who saw herself as an expert in knowing her husband who suffered from dementia. She described her frustration that staff did not seem to see her husband as a person and thwarted her efforts to influence his care (Lundh et al, 2000). Family carers feel they are experts in determining their relative’s needs, values and expectations (Kellett, 1999b), stating the importance of their biographical and personal knowledge in improving care (Lundh et al, 2000; Kellett, 1999b).
Practical aspects of continuation that emerged included personalising bedrooms (Sandberg et al, 2002) and maintaining socialisation, for example by bringing in wine and sharing it in the evening (Sandberg et al, 2001). Some carers produced scrapbooks about their relative describing this as creating a link with the past and helping staff to appreciate their loved one’s identity and history (Davies and Nolan, 2006).
Keeping an eye This involves carers monitoring standards of care for their relative, with relatives viewing this as an important role (Davies and Nolan, 2006). It involves direct observation of care when visiting as well as frequent phone conversations with staff (Sandberg et al, 2002). A small number of UK carers (n=4) said they were unhappy with standards of care within the home. Where these were perceived as good, carers described fewer negative feelings such as guilt (Dellasega and Nolan, 1997).
For one carer, monitoring involved little things such as ensuring teeth were removed at night and a cushion was placed behind the relative at mealtimes (Davies and Nolan, 2006). The carer reported that food was served cold, teeth were not cleaned regularly and promised rehabilitation not delivered. Carers described being fearful of communicating concerns to staff in case care suffered as a consequence of complaining (Sandberg et al, 2001).
Kellett (1999a) argued that carers adjusted more easily when staff actively encouraged them to participate in instrumental tasks. This helped one carer to shift her perception from relinquishing care to that of trust and involvement (Kellett, 1999a). For one female carer, quality care could only be experienced if the person looking after her husband knew his likes and dislikes (Kellett, 1999b).
It appears that standards of care only become an issue when participants feel that staff fail to take account of their knowledge and wishes (Lundh et al, 2000). Carers’ feelings of working without visible goals, lack of staff knowledge about their loved one and ignoring suggestions to improve care contribute to uncertainty about the quality of care (Davies and Nolan, 2006; Hertzberg et al, 2001; Lundh et al, 2000; Dellasega and Nolan, 1997).
Contributing to community In Dellasega and Nolan’s (1997) study, participants saw themselves as having a real contribution to make to the resources within the home or adding to its social life. Many experienced anxiety in searching for ways to continue the sense of belonging and human connection (Kellett, 1999a). Bringing in a daily paper, regular visits and sharing information from family and friends was seen to be important in an attempt to remain close to their loved one (Lundh et al, 2000). Sandberg et al (2002) reported that adult children took an active role in keeping their parent in touch with the rest of the family, especially grandchildren. Dellasega and Nolan (1997) highlighted that, while participants actively initiated relationships with other residents and contributed to their social activities, staff did little to facilitate or encourage this.
Loss, separation and guilt
In their report on relatives’ experiences of the transition of a loved one into long-term care, Clarke and Bright (2006) found that, although family carers felt a diverse range of emotions following the transition, guilt was the most profound. Dellasega and Nolan (1997) reported that participants frequently mentioned having to accept defeat as the dominant emotion, and was directly linked to quality of care or financial concerns.
For spouse carers, feelings of powerlessness coincided with the loss of a lifelong partner, with the move itself bringing home the reality of separation (Lundh et al, 2000). Although adult children attempted to reduce the guilt felt, they experienced similar feelings as a result of having increased involvement with their parents, which left them questioning whether more could have been done to prevent admission (Sandberg et al, 2002).
Davies and Nolan (2006) noted the distinction between whether the carer had been a co-resident prior to admission, claiming that most spouses described the devastating impact of no longer living with their lifelong partner. Ryan and Scullion (2000) reported adult children talked of having lost their parent as if they had died. Some carers clung to the hope that their relative would recover from advanced dementia, blaming themselves for their loved one’s status (Ryan and Scullion. 2000).
Hertzberg et al (2001) reported several relatives wanted to be given more information without having to ask for it, especially about their relative’s daily lives. In the majority of studies, carers cited lack of professional advice and support, both before admission (Ryan and Scullion, 2000; Kellett, 1999a; Dellasega and Nolan, 1997) and after (Davies and Nolan, 2006; Pearson et al; 2004; Lundh et al, 2000; Kellett, 1999a; Kellett, 1999b; Dellasega and Nolan, 1997). Some asked to be given opportunities to talk to staff in less stressful situations (Hertzberg et al, 2001); one carer in Pearson et al’s (2004) study cited the distress caused on admission by staff trying to discuss funeral arrangements. Hertzberg et al (2001) referred to staff as passive, and reported that family carers had to take responsibility for interaction.
Sandberg et al (2001) discussed subjectively a key theme in their findings, which they named ‘testing the water’. They described this process as a means that allowed carers to evaluate the staff/carer relationship to assess the level to which staff would take on board their views. In one example, staff had given the impression of welcoming and encouraging feedback on quality of care, but rebuffed attempts to discuss concerns, which had a negative effect on future relationships (Sandberg et al, 2001).
In Dellasega and Nolan’s (1997) study, almost half the carers in both the US and the UK wanted improved communication on the admission process. Pressure on hospital beds and emergency admissions into care homes often mean that limited information is given, which exacerbates feelings of loss, separation and guilt (Clarke and Bright, 2006; Sandberg et al, 2001; Lundh et al, 2000; Dellasega and Nolan, 1997). In one study, only two out of 10 carers received adequate information before admission and none indicated that their relative had any say in their own admission (Ryan and Scullion, 2000). The study’s small sample size means it is not possible to generalise this finding, but it does echo other literature findings, thus warranting further consideration.
Discussion and conclusion
There are limitations as most sample sizes were small, however, qualitative studies provide rich data. Transferability was questionable with a number of studies, due to variability in key characteristics, while some had predominantly female samples. This can introduce bias that should be borne in mind when interpreting findings. Female experiences may vary from males' within these studies and gender comparisons cannot be concluded, as the male sample sizes in two of the studies are so small.
The literature suggests that the placement process begins before the transition itself. As care placement is often linked to times of crisis (Clarke and Bright 2006; Dellasega and Nolan, 1997), it is not surprising to find the literature identifying more negative than positive experiences.
Many studies demonstrated how the process of transition is far from linear and static. For example, two built on each other as representing the second and third phase in a larger study (Sandberg et al, 2002; 2001), which demonstrated the various phases in the transition process. In combination, the studies explored the process of placement as a temporal experience prior to, entry into and ongoing adjustment, highlighting the differences in experiences according to the nature of the relationship to the cared-for person.
This review challenges nurses caring for older people to reflect on the many diverse aspects that the placement process entails. Ford and McCormack (2000) highlighted the value of a biographical approach to assessment, whereby nurses take into account the lived experiences of the older person, valuing their unique experiences. The Burford Unit Development Model is an example of this (Johns, 1994). With integrated needs assessments, nurses working with carers are in a prime position to ensure a holistic assessment that includes the needs of the carer is undertaken. Nolan et al (1995) argue that this is one of the touchstones of good practice.
By using a biographical approach to care planning, viewing the individual as a whole with the emphasis on their own perspective (Ford and McCormack, 2000), nurses can incorporate a humanistic way of working, having an existential awareness requiring an authenticity with oneself which is reflected in our relationships with others (McKee, 1991). This review provides a foundation for future empirical research. Davies (2005) argued that conceptual and theoretical frameworks are often not referred to within these studies as a means of improving care practice, with a need for more empirical testing on a range of theoretical ideas within a care home context. Those within gay and lesbian relationships as well as ethnic minorities could also be explored.
The review highlights the numerous issues surrounding placement, but generalisation of the findings is limited due to the complex nature of the processes involved. The literature failed to consider the impact of organisational culture on the experiences of older people and their families. The culture of a home is influenced by staff values and the models of care in operation (Davies, 2005). Furthermore, traditions, availability of resources and leadership styles will also play a part (Stanley and Reed, 1999).
In answering the review question, it is clear that nurses must acknowledge and support family relationships holistically, recognising and drawing on relatives’ knowledge of the older person. An understanding of the disciplines involved in the placement process and a clear knowledge when carrying out a biographical assessment are also needed.
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