Talking About Dying Survey

Full study 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

Funder

Baily Thomas Charitable Fund

Research collaborators

Dr Irene Tuffrey-Wijne (Principal Investigator) Kingston University & St George’s, University of London
Dr Stuart Todd University of Cardiff
Dr Janet Finlayson Glasgow Caledonian University
Dr Laurence Taggart University of Ulster
Dr Jane Bernal Independent researcher

Claire Lam (Research Assistant) Kingston University & St George’s, University of London

Dates

Data collection started in June 2017 and will close in December 2017. The study will be completed in August 2018.

Contact and further information

Email: tad@sgul.kingston.ac.uk
Telephone: +44 (0)20 8725 0116

Why this study?

Research indicates that support/care workers tend not to inform people with learning disabilities when they, or someone close to them, are terminally ill and expected to die. This may affect their ability to be involved in their own care planning, or to prepare for the death of someone close to them. It is unknown how common this practice is, nor how this impacts on the provision of effective end-of-life and bereavement support. It is also unknown to what extent learning disability services engage in advance care planning with clients who are terminally ill. This study will help us to understand this, and find out more about the support/training needs of workers. The ultimate aim is to provide guidelines and resources for staff in learning disability services.

What is involved?

The full research questions are:

  1. What proportion of adults with learning disabilities, living in residential and supported living settings, has an irreversible terminal condition within a 12-month period? Of those, what proportions have been informed, partially informed, or not informed that they have an irreversible terminal illness? What proportion has features of an advance care plan within their individual support/care plans, and what are the key features of the advance care plans which have been implemented?
  2. What proportion of adults with learning disabilities has experienced the death of a close friend or relative within a 12-month period? What proportion of these deaths was communicated to people with learning disabilities, and what proportion of expected deaths were communicated to people with learning disabilities as being expected (i.e. before the death occurred)?
  3. What perceived factors are associated with whether or not a person with learning disabilities is informed that i) they, themselves, or ii) their close friend/relative, have an irreversible terminal illness? Is proactive support/care planning (e.g. presence of advance care plan) associated with non-disclosure, partial disclosure or disclosure of expected death?
  4. What are the views, experiences and training and support needs of support and care workers in relation to working with i) people with learning disabilities towards the end of their lives, and ii) people with learning disabilities recently bereaved?

We are doing an anonymous UK-wide survey of support/care workers working for about 50 different learning disability service providers, who between them support around 10,000 people with learning disabilities. We aim to get an electronic questionnaire to a large sample of direct support staff. The survey asks whether they have, within the past 12 months, supported a person with learning disabilities who was either terminally ill, or who has been bereaved of a friend/relative who died after a period of illness (in other words, those who have been involved in deaths that were EXPECTED, rather than sudden). The survey will include questions on whether the people with learning disabilities were aware that they, or their friend/relative, were going to die. For those clients who were terminally ill, there will also be questions about advance care planning. The survey is currently being trialled.

We have obtained a positive ethical opinion for the study from the Kingston University Faculty Research Ethics Committee and from the Northern Ireland Social Care Research Ethics Committee.

How will we do it?

The standard procedure for recruiting services and participants is as follows (see also the graph at the end of this document):

Short electronic survey (5 mins) to be completed by a senior manager at the top of the organisation, to gather basic information on the size of the organisation and the number of people with learning disabilities they support. Will be asked to provide email addresses for “middle managers” within their organisation (who are responsible for a particular region/cluster of homes/teams)

Email exchange with middle managers, to establish how many homes/teams they are responsible for, and how many of these they are willing to send a link to the survey (this will enable us to establish the response rate).

Full electronic survey (10-30 mins) to be completed by ONE staff member from each home/team. They will be asked: number of clients and number of deaths/bereavements in the past 12 months (if none, there will be a very limited number of questions only, related to attitudes and training needs). In-depth questions will be asked about ONE client only.

What will happen afterwards?

The survey findings will inform the development of guidelines, which will be sent to all services that took part in the survey, and will be freely available online. We will also write journal articles and give presentations at national and international conferences.

The survey findings will inform the development of guidelines, which will be sent to all services that took part in the survey, and will be freely available online. We will also write journal articles and give presentations at national and international conferences.

Research Advisory Group

A Research Advisory Group (RAG) meets in Tooting every 3 to 6 months. Their role is to offer support and advice on the development, piloting and administration of the survey, champion the survey within their own services, and promote the results of the study (including any new resources).

The group has the following members:

Annette Boaz Professor in Healthcare Research, Kingston & St George’s University
Lester Bream Advisor with learning disabilities, GRASSroots
Amanda Cresswell Advisor with learning disabilities, Kingston & St George’s University
Jo Giles Easyhealth Project Coordinator, Generate
David Jeffrey Advisor with learning disabilities, GRASSroots
Katherine Hunt Senior Research Fellow, University of Southampton
Maggie McCaul Quality coordinator, Mencap
Michelle McDermott
Advisor with learning disabilities, GRASSroots
Tracey Rose Community Learning Disability Nurse, Kent Community Health NHS Foundation Trust
Julia Shearn Researcher, University of South Wales
Monica Stannard Family carer
Bob Tindall Managing Director, Dimensions UK
Jean Willson Family carer, Centre 404
Rhian Worth Researcher, University of South Wales