People with intellectual disabilities who are affected by a relative or friend with cancer: A qualitative study exploring experiences and support needs

PurposeTo explore the experiences of people with intellectual disabilities (ID) who have a relative or friend with cancer, and to identify their support needs.Methods and sampleParticipants were 21 adults with ID who had a relative/friend with cancer, now or in the past. Data were collected using focus groups and face-to-face interviews. Focus groups met four times, using a range of data collection techniques. Sessions were audio recorded and transcribed verbatim. Data were analysed using thematic content analysis. Data were collected between March 2010 and March 2011.ResultsFour themes emerged: (1) Protection and inclusion: participants who had not been told about their loved one's illness felt excluded; (2) Coping with cancer: participants had vivid memories of events and feelings. They worried about their families. Many had become carers themselves; (3) Understanding cancer: participants lacked knowledge about cancer and wanted to know more. (4) Someone to talk to: participants would have liked to share their feelings and questions with family, friends or professionals, but had not voiced their questions or concerns. ‘Someone to talk to about my feelings and worries’ and ‘Someone to support the rest of my family’ were voted the most helpful support strategies.ConclusionsCancer nurses should ensure that people with ID in their patients' social circle are included in the family unit and receive adequate emotional support. They should be proactive in giving them information that is easy to understand. Using fictional stories can be particularly helpful in eliciting questions and concerns.