Introduction Around 2.5% of the population have learning disabilities (LD). Most people with LD will be affected by cancer of family or friends at some point in their lives. Their support needs are insufficiently understood.
Aims To explore the experiences and support needs of adults with LD who have a relative or friend with cancer. To make recommendations for practice.
Methods Twenty-two people with LD took part in focus groups and face-to-face interviews. All participants had experience of having a close relative/friend with cancer. The groups were co-facilitated by two co-researchers with LD, using a range of methodologies (including story-telling, role play and Nominal Group Technique) to extract participants' experiences and views. Data were analysed using content analysis.
Results Being protected from information (as many participants were) negatively affected their coping. Participants worried about their relative/friend's illness and the impact on both the patient and on themselves; but had not shared their worries or questions with others. Several participants had become carers themselves. The greatest need was for ‘someone to talk to’; this need was not met by either families or professionals. There was a lack of understanding about cancer, and a lack of access to cancer information; participants wanted such information. However, accessible information materials were viewed as less important than access to someone who could explain.
Discussion The needs of people with LD who are a relative/friend of someone with cancer are often overlooked. This group does not ask for support, and therefore pro-active support is needed from professionals. This includes emotional support as well as informational support.
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