Carers’ experiences when the person they have been caring for enters a residential aged care facility permanently: a systematic review

Abstract

Background According to the literature, the experience for carer’s when the person they have been caring for permanently enters a residential aged care facility, is emotional, complex and challenging. Experts have raised the importance of understanding the experience in order to support and implement policies and programs. The systematic review was motivated by this need to use the evidence base to inform effective and feasible interventions to support carers, and the absence of a systematic review synthesizing the qualitative evidence on how carers experience the transition. Objectives To identify and synthesize the evidence on the experiences of carers of older people when the person they had been providing care to is admitted permanently into a Residential Aged Care Facility (RACF) and draw recommendations from the synthesis of the evidence on these experiences to enhance understanding and inform practices aimed at supporting affected carers. Inclusion criteria Types of participants All unpaid carers of people who had experienced the person they had been caring for at home being moved into a RACF permanently. Phenomenon of interest Experiences of the carer of the older person when the person they have been caring for at home is admitted into a RACF permanently. Types of studies The review considered qualitative studies, including but not limited to designs such as phenomenology, grounded theory, ethnography and action research. Context Very High Human Development Index countries were included as ‘developed countries’. Search strategy A comprehensive search of the leading databases which are sources of qualitative published and unpublished studies was conducted between 18 September 2013 and 10 November 2013. The search considered studies reported in English and published from database inception to 10 November 2013. Methodological quality Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using the appraisal tool in the Joanna Briggs Institute (JBI) Qualitative Assessment and Review Instrument (JBI QARI). Data collection Data were extracted from identified papers using the standardized data extraction tool from JBI QARI. The data extracted included descriptive details about the phenomena of interest, populations and study methods. Data synthesis The JBI meta-aggregative approach for synthesizing qualitative evidence was used. Research findings were pooled using JBI QARI. Study findings that were supported by the data in primary studies were organized into categories on the basis of similarity of meaning. These categories were then subjected to a meta-synthesis to produce a set of synthesized findings. Results Fourteen studies matched the inclusion criteria and were included in the review. From these 14 studies a total of 71 study findings about how carers experience the transition when the person they have been caring for is admitted permanently into a RACF were organized into seven categories. From the seven categories created on the basis of similarities of meaning, the following three synthesized findings describing the experience were produced: (i) Carers experience mixed feelings (including guilt, loss of control, failure and relief) when the person they have been caring for is admitted permanently into a RACF, which often occurs after a crisis. Carers seek validation about the decision and often display a need for support before during and after the move to RACF; (ii) Carers may experience the separation as sudden and unplanned, and feel that maintaining continuity in care after admission of the person they have been caring for into the RACF is important for alleviating the loneliness and changed sense of identity they experience; (iii) Planning and building familiarity with the RACF prior to the move may help carers to minimize the experience of loss of control that is common when moving a person one has been caring for permanently into a RACF. This experience is made worse by those involved focusing on administrative issues and not being mindful of carers’ psycho-social needs during the admission process. Conclusions The findings highlight the importance of interventions being implemented to provide support for carers prior to the person going into a RACF, at the decision making time, during the move and post-move. Carers experience mixed feelings and have difficulty coping with the separation and visit the RACF to maintain the relationship. Pre-planning prior to the move is important as the evidence suggests that when there is a sense of familiarity with the choice of RACF there is a more positive perception of the transition from the carers’ perspectives. The findings call for health care professionals and RACF staff to assess the psychosocial needs of carers, and where feasible promote steps that enable the carers to continue to have a caring relationship after separation. Implications for Practice It is suggested that carers should be encouraged to plan for the placement early on and develop a sense of familiarity with RACF before the transition. Carers should be given specific information about the RACF prior to the older person being moved. Health care professionals should be mindful to consider carers’ needs at the time of the transition and to facilitate strategies for a continuing relationship post-move. Implications for Research Additional high quality studies are required to develop a clearer understanding of support interventions and how they might interact and benefit the targeted carer population.