Needs of carers and supporters must be acknowledged to ensure good support to bereaved people with learning disabilities


In recent years, a number of studies have begun to explore bereavement and grief in people with learning disabilities. Hollins and Esterhuyzen (1997) for example in the late 1990s reported the results of a matched control group study into the reaction of people with learning disabilities to bereavement, which found highly significant differences significant differences are demonstrated between

bereaved and non-bereaved samples on behavioural measurements checklists. Interestingly though, they found that staff and carers rarely attributed these behaviour changes to the bereavement.

The position has changed considerably in the last decade and there is now a much wider recognition of the need to recognise and respond to bereavement in people with learning disabilities with a number of resources available for families and staff supporting people in this position. (see for example Staffordshire BSLD website)

Staff and family carers may find offering support a difficult task and the authors of this study were interested in exploring the personal experiences of family carers and staff in residential care services in supporting people with learning  disabilities through bereavement using Interpretative Phenomenological Analysis. This approach aims to provide insights into how any given person in a specific context, makes sense of a phenomenon.

What they did was develop a semi-structured interview schedule which they administered to 11 carers, asking about their experience of supporting adults with learning disabilities through bereavement. They then analysed the transcripts of the research using the interpretative phenomenological analysis approach

What they found was that there were five themes in the responses:

  • Factors making the experience difficult for carers
  • Factors that helped carers
  • Carers’ perspectives on the responses of people with learning disabilities
  • Approaches to supporting people with learning disabilities
  • Carers’ perspectives on support

They conclude that the task of supporting people through bereavement is clearly emotionally demanding and that during this time, the support needs of carers need to be acknowledged and addressed. Without taking the needs of carers and supporters into account, it will not be possible to meet the support needs of people with learning disabilities at this time.

The Experience of Carers in Supporting People with Intellectual Disabilities through the Process of Bereavement: An Interpretative Phenomenological Analysis, Handley E & Hutchinson N., in  Journal of Applied Research in Intellectual Disabilities, 26: 186–194.

Reference: Bereavement and grief in adults with learning disabilities, Hollins S Esterhuyzen, in The British Journal of Psychiatry 170: 497-501

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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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