Download Tuffrey-Wijne - Macmillan Cancer Support

Support for people with Learning Disabilities affected by a
person with cancer
Irene Tuffrey-Wijne, St George’s University London
Email: [email protected]
Summary
This study was funded by the User-Led Grant scheme. It examines the experiences of
adults with learning disabilities (LD) who have a relative or friend with cancer.
Background
Information for this research was gathered primarily through focus groups. Three focus
groups were convened, with a total of 17 participants. Semi-structured interviews were held
with four participants. The participants were adults with mild to moderate learning disabilities
who had a close relative/friend with cancer, now or in the past. Each of the focus groups
met four times to elicit their experiences of what people did or didn’t do to help them to
understand and manage their situation; to identify what could have been done better and to
establish their recommendations for support. A range of data collection techniques was
used, including story-telling, role play and Nominal Group Technique (voting on the most
helpful support strategies).
Specific aims of the research are:
1. To explore the experiences of adults with LD who have a relative or friend with cancer
2. To identify the support and information needs of this group
3. To identify the barriers people with LD face to receiving adequate support and
information when a relative or friend has cancer
4. To make recommendations for (i) practice, (ii) the development of resources and
(iii) future research, to ensure that people with LD are adequately supported when a
relative or friend has cancer
Findings
The study concluded August 2011.
Four themes emerged:
1. Protection and inclusion. Participants who had not been told about the patient’s illness
felt excluded. Being told that someone had cancer did not necessarily mean that the
participant had understood the implications.
2. Coping with cancer. Participants had vivid memories of events and feelings. They
worried about their families. Several had become carers themselves.
3. Understanding cancer. Participants lacked knowledge about cancer and wanted to
know more. Many were worried that they themselves would get cancer.
4. Someone to talk to. Participants would have liked to share their feelings and questions
with family, friends or professionals, but most had not done so.
Nine possible helpful support measures were suggested by participants during the course of
the study. These were voted on by the 17 focus group participants. ‘Someone to talk to
about my feelings and worries’ and ‘Someone to support the rest of my family’ emerged as
the most helpful support strategies, well above ‘Information that is easy to understand’.
Recommendations for practice
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The need for support by the person with learning disabilities should be assumed. The
person is unlikely to ask for such support.
It should not be assumed that the family or carers of the person with learning disabilities
will provide adequate support and information.
Staff should talk to patients and/or their non-disabled relatives about ways in which the
person with learning disabilities can be supported.
Health care professionals, including cancer and palliative care staff, should offer support
to families or learning disability staff, so that these are better able to support the person.
This includes passing on factual information about the cancer; advice on including the
person in what is happening; and advice on normal emotional responses.
Health care professionals should familiarise themselves with the availability of
accessible cancer information materials, and learn how to use them.
Training on ‘learning disability’, and in particularly on communication with people with
learning disabilities, should be made available for health care staff.
Recommendations for the development of resources
There is now a range of general cancer information materials available that are accessible,
and these could be expanded. However, developing a workforce that is able to use those
resources is equally important. Therefore, there should be development of staff training
alongside the development of resources. Using accessible materials should support
communication, rather than be the prime source of communication.
Why is this work important?
Around 2.5% of the UK population have learning disabilities (approximately 1.2 million
people in England). Most (55%) live with parents and a further 12% live with other relatives.
Significant numbers are carers of elderly parents. Around 15% of people with LD live in
residential care homes, often with an ageing population of peers, among whom cancer
incidence is rising. Most people with LD will therefore be affected by cancer of family
members or close friends at some point in their lives.
Existing evidence suggests that people with LD are often excluded from knowledge about
cancer by both families and professionals, and that this lack of involvement and information
may cause distress. Bad news of cancer is often not given to people with LD, or is given in a
confusing way. There is insufficient literature to guide the development of best practice
guidelines in this area and very few studies have explored the experiences of people with LD
themselves around cancer, death and dying. Evidence suggests, however, that people with
LD can and want to be involved in such research.
Publications or other outputs related to this research
Supporting people with learning disabilities who are affected by a relative or friend with
cancer. Poster. Help the Hospices Conference, Bournemouth, UK. 2011.