Future Care Study
Research type
Research Study
Full title
The Future Care Study: Decision-making concerning eating and drinking for people with progressive neurological disease with and without decision-making capacity; patient, public, professional and family perspectives
IRAS ID
156054
Contact name
Stephen Barclay
Contact email
Research summary
This study investigates decisions concerning eating and drinking for individuals with progressive neurological disease living within the community. Using a multi-method design, it investigates patient, public, professional and family perspectives into these issues. There are three phases of research:
Study One is a face-to-face survey of the general public examining attitudes towards feeding at the end-of-life.
Study Two uses qualitative interviews and observation to investigate patient, family carer, paid carer and healthcare professionals’ perspectives on eating and drinking difficulties, changes over time and the factors involved in decision-making. Individuals with a range of progressive neurological diseases and decision-making capacity will be recruited.
Study Three, the final phase, utilises focus groups of lay carers, health and social care providers, user representatives from charities and support groups and bereaved relatives to develop a toolkit for improving decision-making.
REC name
London - South East Research Ethics Committee
REC reference
14/LO/1156
Date of REC Opinion
8 Aug 2014
REC opinion
Further Information Favourable Opinion