No abstract

The main implications are for supports to adolescent siblings by helping them to develop skills in managing others' reactions and openly discussing concerns about their brother's future.

Background  Individuals with intellectual disability are at higher risk of premature death compared with individuals without intellectual disability, and therefore parents of people with intellectual disability are more likely to outlive their children. However, there has been relatively little research investigating the bereavement experiences of parents of deceased children with intellectual disability. Method  Semi‐structured interviews were used to explore the experiences of nine mothers whose child with intellectual disability had died. The transcripts were analysed qualitatively using Interpretative Phenomenological Analysis. Results  Five themes emerged from the analysis: loss, benefit finding, coping, sources of support and medical relationships. An analysis of the accounts indicated similarities and differences between the experiences of the mothers. In particular, continuing in their caring role by working within the world of intellectual disability following the death of their child was important to all of the mothers. Support from similarly bereaved parents was the most useful source of support, although it was not always readily accessible. Conclusions  Implications for theory and practice are described including suggestions that service providers should aim to maintain links with families after the death of their child, a parent‐to‐parent programme that enables parents to contact others in a similar situation might be beneficial, and further research into the functions of coping strategies and supports in loss would be worthwhile.

Accessible summary People with a learning disability told us people do not talk to them about death. This is about a group we ran to help people learn about death and the end of their life. The group talked about people who had died and what might happen when they die. People in the group wanted help to talk to their own parents about what might happen when their parents die. People did not have enough information about the cost of funerals. The group was important as it helped people to learn. Some people made plans for what they would like to happen when they die. AbstractBackgroundAcademic research and reports from healthcare professionals tell us people with learning disabilities are not routinely supported to learn about end‐of‐life issues or make plans for the end of their lives.MaterialsQuestionnaires were used to check how much people knew. Accessible symbols were used to help people understand end‐of‐life specific terms.MethodPartnering with a charity, three sessions were held in three consecutive weeks to ask people in a convened group what they wanted to know and help them learn. The sessions supported people to start creating their own plans for funerals, where they want to die and what should happen with their possessions.ResultsThis group had between 21 and 23 (N = 23) attendees each week and all except one person came back after the first week. The participants were keen to highlight what they did not know and learn about end‐of‐life issues. They also wanted support to plan for the end of their lives and their parents' lives, and the group tried to provide information and support on these topics.ConclusionThis group was a valuable exercise that was very much needed by local people with learning disabilities. The group will run again and should be offered in other areas. Groups of this kind can offer unmet needs that are highlighted by national guidance in England, UK such as the NHS long‐term plan and the Learning Disability Mortality Review Programme.

Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured interviews were used to explore the experiences of 6 couples whose child with Down syndrome and a CHC had died. The interviews were analyzed qualitatively using interpretative phenomenological analysis (IPA), and 4 themes emerged: dilemmas associated with the dual diagnosis; treatment decisions during the life and the death of their child ("We had to make a decision"); ways couples coped when bereaved ("We weren't really going through it together"); and ripples from the child's life. There was a high degree of similarity of experience within couples. Differences between couples existed in their experiences of coping and supporting each other. Practical implications include the importance of considering the specific needs of couples, individuals, and fathers within partnerships.