‘Making it better’: Self-perceived roles of family caregivers of older people living in care homes: A qualitative study
Section snippets
What this paper adds to the literature
What is already known about this topic?
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Most family caregivers wish to maintain active involvement in the life and care of their relative following admission to a nursing home; however, there appears to be little willingness on the part of caregiving staff to actively negotiate the nature and extent of this involvement.
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More generally there is some evidence that involvement with nursing home residents by relatives can have positive effects for both relatives and residents, although there are
Background
At the beginning of the 21st century, the care of frail older people continues to present one of the most significant challenges for health and welfare systems. While community care remains a key policy objective throughout Europe, a range of models of collective care will nevertheless be needed by increasing numbers of frail older people. As a result, many family caregivers will face the challenges of assisting an older person to move into a care home and of creating a new caring role for
Uncertainties about the role of family caregivers following the move to a care home
There is relatively little within the literature concerning the roles that family caregivers might play following an older person's relocation to a care home. This is surprising given the difficulties family carers experience in replacing caregiving, with the sense of role loss at this time having been well documented (Aneshensel et al., 1995; Dellasega and Mastrian, 1995; Nolan et al., 1996; Wright, 1998). A number of studies suggest that role redefinition is a crucial task for carers
Finding meaning in continuing to care
Kellett (1998) identifies eight shared meanings which she suggests illuminate the various ways in which family caregivers strive to create possibilities to care, enabling them to attribute meaning to their everyday involvement in caring for their relative (Box 1). She argues that it is vital that nurses learn from relatives who find meaning in continuing to care following admission to a care home, in order to assist those who are struggling to do so.
Fleming (1998) suggests that family
Objectives
The objectives of the study from which the data presented here were drawn were as follows:
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to explore, describe and interpret the experiences of family caregivers in relation to helping a relative to move into a nursing home and continuing to support them within that setting;
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to explore, describe and interpret from the perspective of family caregivers, current practice within nursing homes in relation to providing support and encouraging involvement, particularly around the time of admission;
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to
Methods
The research involved semi-structured interviews () involving 48 people who had experienced admission of a close relative to a nursing home. A constructivist methodology was used (Rodwell, 1998) with the intention of creating a joint understanding, shared by the interviewer and the participant, of each participant's experiences. The interviews explored events leading up to the admission, the experience of relocation and involvement since admission. The latter period is the focus of this
Analysis
The approach to analysis was inductive, and sought to develop theoretical propositions that would accurately reflect the participant's feelings, thoughts and actions (Maykut and Morehouse, 1994). While detailed analysis of the data was undertaken in stages, the process was essentially ongoing with a written summary being prepared following each interview. This phased approach to data analysis is consistent with the constructivist method (Lincoln and Guba, 1985; Rodwell, 1998), and comprised
Findings
Key characteristics of people who took part in the interviews are shown in Table 2. For sixteen of the participants (eleven spouses, four adult children and one niece), the older person had been co-resident prior to their admission to the nursing home. Reflecting the very small number of care home residents from ethnic minority groups at the time of the study, all of the participants were white Caucasian. Hence the extent to which the study findings might be relevant to the growing number of
‘Making it better’
“I’m getting there. I know he's got to be there. It's for the best. But with, with me going, making it better, making his world better.”
Jean, Wife, Interview No. 35.
Of the three phases of the move to the nursing home participants devoted most time within the interview to the third phase, that of ‘making it better’. This not only reflects the fact that most relatives were still engaged in trying to ensure that the older person received the care that they needed, but also gives an indication of
Contributing to community
The idea of ‘community’ in the context of a care home is central to the study upon which this paper is based (Davies, 2001), for example, the ways in which residents, staff and relatives could all enhance experiences for others within the care setting, and it was quite apparent that relatives often saw themselves as having a real contribution to make in several ways. This could be practical, by directly helping staff with aspects of care around the home, but also by enhancing either the
Discussion
Placing a relative in a care home is without doubt a major life event with important repercussions for older people and their family carers. Recently there has been increased attention to the process involved in the decision-making phase and that of actually making the move, but relatively less is known about relatives’ efforts to engage with the home in the longer term. This paper reports on the findings of data gathered in interviews with 48 people who had assisted a close relative to move
Conclusions
All relatives involved in this study attached considerable importance to their continued involvement in one form or another, in ensuring the quality of life of their relative, and enhancing the overall sense of community within the home. However, such participation was often not actively promoted or facilitated by staff. In some homes, staff rarely draw upon the expertise of family caregivers in planning and implementing care for residents and do little to enhance the experience of visiting.
The
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