Talking About Dying Survey

• Research type

  Research Study

• Full title

  How widespread is the practice of non-disclosure of expected death (of self or others) to adults with learning disabilities who live in supported living and residential settings in the United Kingdom? A comprehensive survey of support and care workers

• IRAS ID

  231667

• Contact name

  Irene Tuffrey-Wijne

• Contact email

  I.Tuffrey-Wijne@sgul.kingston.ac.uk

• Sponsor organisation

  Kingston University

• Duration of Study in the UK

  1 years, 6 months, 1 days

• Research summary

  Inquiries in recent years have highlighted cases of people with LD who had poor quality of end of life care, due in part to lack of proactive planning. Previous studies have shown that people with LD are often not told about death and dying. This precludes their involvement in preparing for death. It also precludes them from a period of anticipatory grieving, which can be important in enabling people to absorb the reality of an approaching death. It is not known how widespread this practice of non-disclosure is, nor how it impacts on the provision of effective and proactive end of life or bereavement support - in particular in relation to the process of advance care planning (ACP) and bereavement care.
  This project, funded by Baily Thomas Charitable Fund, will survey support/care workers of 10,000 adults with learning disabilities (LD), who live in supported living and residential services throughout the United Kingdom (UK); and collect comprehensive information on current practice of non-disclosure, partial disclosure and disclosure of expected death to the adults with LD they support/care for. The study objectives are to establish (1) what proportion of adults with learning disabilities have a terminal illness of which they are expected to die, (2) how many have experienced the death of a close friend/relative within a 12 month period; (3) how widespread the practice of non-disclosure is, and (4) the support/training needs of workers. Questionnaires will be distributed among a sample of up to 50 providers of residential and supported living settings, who provide support to around 10,000 people with learning disabilities. The project will contribute to the development of guidelines and resources.

• REC name

  HSC REC B

• REC reference

  17/NI/0198

• Date of REC Opinion

  2 Nov 2017

• REC opinion

  Further Information Favourable Opinion