End of life care for people with learning disabilities explored through experiences of support staff


In the late 1990s, a group of people concerned about the quality of palliative care being offered to people with learning disabilities started a voluntary organiation now known as the PCPLD Network. The work of the network has raised awareness of the issue and also supported the research agenda into this topic.

This current qualitative study set out to gather the experiences of staff in community living services by running a number of focus groups and carrying out a number of individual interviews using grounded theory methodology, whereby key points from the data collected are grouped into concepts and categories as the basis for the creation of a theory.

What they found was five key ‘issues’:

  • knowledge of dying,
  • ethical values,
  • the where of caring,
  • the how of caring
  • post-death caring.

They discovered that each of the issues occurred in relationship with ‘partners   – e.g the dying person, other clients, fellow staff, family, external health services and the coroner.

They conclude that community staff  were fully committed to end-of-life care for the people they supported and that end of life care for people with learning disabilities

represents a complex interaction between the care issues and the partners involved in care.

End-of-Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services, Wiese, M et al., in Journal of Applied Research in Intellectual Disabilities, 25: 571–583.

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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