| Abstrakt: |
QUESTION: How do caregivers describe their experiences of deciding to place a relative with Alzheimer's disease (AD) in a special care unit (SCU)?DesignSemistructured interviews.Setting3 midwestern states in the US.Participants30 family caregivers (80% women; 70% children and 30% spouses of patients) of relatives with AD who lived in an SCU.MethodsCaregivers were interviewed for 1-3 hours by clinical nurse specialists or a gerontology specialist. These semistructured interviews were videotaped and transcribed. Caregivers were asked to describe the type and quantity of care they had provided before the SCU placement; their involvement since placement; the quality of their relationship with the SCU staff; their evaluation of the care their relative was receiving; and their views about the SCU placement. They were also asked to describe their feelings at the time of making the decision and during the actual relocation of their relative, and what helped or hindered dealing with their feelings about the SCU placement. 3 reviewers independently used Luborsky's method of thematic analysis and QSR NUD*IST NVIVO qualitative software to code and analyse tire transcripts. Data interpretation involved independent and then consensual (between researchers) interpretation of all aspects of the text.Main findings4 patterns emerged. Moving towards the unavoidable decision: caregivers gradually realised that something was wrong with their relative, which led to a breaking point at which they realised they could no longer care for their relative at home. Caregivers worried about their relative's safety, which resulted in a vigilance that was physically and emotionally draining. This breaking point was associated with a sense of finality. Struggling with the decision: caregivers described their anguish at the realisation they would need to place their relative in an SCU and they used words like 'difficult,' 'tough,' 'devastating,' and 'terrible:' Feelings of guilt were often present. The presence or absence of support influenced the decision to place their relative in an SCU. Sharing the decision with the entire family lessened feelings of anguish and guilt. Seeking reassurance: caregivers needed to know that they had made the right decision, and the perception that their relative was receiving better care in the SCU gave them the best reassurance. This reassurance depended on their perception of the quality of care and their relative's level of contentment in the SCU. Sometimes the symptoms of AD made it difficult for caregivers to know how their relative was responding to the SCU. Caregivers observed and noticed how the staff interacted with residents in the SCU, and it was important to them that their relative appeared neat and clean. Caregivers experienced relief if they believed that their relative was receiving good care. Remaining connected: maintaining familial ties was a theme throughout the decision making process. Placement in the SCU marked a turning point and indicated the finality of the progression of AD. Caregivers remained involved in their relative's life by visiting often and taking their relative out.ConclusionsFamily caregivers who placed their relatives with Alzheimer's disease in a special care unit (SCU) described the anguish they felt in making the decision. Knowing their relative was receiving good care helped relieve their anguish. Caregivers maintained involvement in their relative's life in the SCU. [ABSTRACT FROM AUTHOR] |
