Transition: the experiences of support workers caring for people with learning disabilities towards the end of life

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AimThis research aims to provide a better understanding of the experience of support workers, as paid carers, caring for adults with learning disabilities (LDs) nearing the end of life in residential settings.BackgroundIn the past 100 years, people with LDs (also referred to as ‘learning difficulty’, ‘mental retardation’ and ‘intellectual disability’ internationally) are living longer with life expectancy approaching the population norm and more likely to die from diseases such as cancer, respiratory and vascular diseases. Community-based supported accommodation has become the foremost provider for people with LDs in their late 30 s or over in the UK. In the midst of the transition from living to dying for people with LDs, and even postdeath, the needs of support workers are often neglected against a background where most are unqualified, often with little experience of death and dying event, and with limited access to clinical supervision and education.Methods3 focus groups involving 13 support workers were conducted at 3 independent service provider settings for people with LDs in London.FindingsIn recounting the experiences of these groups of support workers, 6 themes are described: strong emotional bond and identification; collaboration with other services; training issues around the extended role; support within the organisation; relationship with family/other residents; and grieving the ‘loss’.ConclusionsAlthough support workers play a key role in meeting the end-of-life care needs of people with LDs in residential settings, their own needs are often neglected. There are still significant gaps in understanding these needs and practice development in this area.

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