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.