'Working to the end': experiences of the home care workforce providing end-of-life care

Background The experiences and beliefs of the home care workforce supporting people with dementia to live in their own homes up to the end of life have been relatively ignored in research. Methods This qualitative empirical study conducted in 2016, interviewed 28 home care workers and 12 managers from a range of home care agencies in South-East England and London. Framework analysis was conducted to identify themes or consistencies in the data. Results Preliminary findings suggest that blurred boundaries, the need for communication, the constant flux of a home care worker’s role and their perceptions of a client’s death were important factors in their work. This paper elaborates on the theme of “perceptions of a client’s death”. This encompasses participants’ experiences of a client’s death; the relevance of ‘emotional labour’ to explain the impact of their actions and reactions; and support in place to contextualise their experiences. Participants described close relationships with clients, at times resulting in strong attachments that made the process of grieving harder. A blurring of boundaries was reported regarding their role when the client’s death occurred, with some families wanting to be left alone, whilst current employment practices require the worker to stay in the home until professionals arrived. Moreover, home care workers were generally instructed not to touch the body, while some family requested assistance with cleaning, laying out, preparing or moving the body. Participants reported a range of sources of support, mainly from personal family and friends, and other colleagues. However, only a small proportion of staff reported being offered individual telephone support or group supervision to discuss work experiences. Many worked in isolation and felt there were few avenues for support from their employers. Conclusions Home care workers provide care to people with dementia at the end of life in isolation, with many experiencing lack of clarity in their caring role and limited support as their client nears the end of their life. Preliminary findings from this study may be helpful in developing support resources for home care practice and human resources management.