Background: This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life-limiting neurodevelopmental disability.Methods: Twelve mothers were interviewed and topics included mothers' experiences of caring, the impact on themselves and their family of care provision, and the management of day-to-day life. Data were analysed using thematic analysis.Results: Four themes were identified. "Starting Out" relates to mothers' experiences of the birth of their child and the aftermath. "Keeping the Show on the Road" describes the strategies families employ to manage life day to day and the resources they use. "Shouldering the Burden" describes the range of physical, psychological, and social consequences of the situation for mothers and the family. "The Bigger Picture" relates to the world outside the family and how this is navigated.Conclusions: Findings suggest mothers' overall experiences are characterized by a constant struggle, with evidence of negative impacts on family life, though there is also evidence of resilience and coping. Implications regarding the provision of services are discussed.

Accessible Summary• People with intellectual disabilities are living longer than ever before.• Although people with intellectual disabilities are living longer, they still suffer from many illnesses. This may reduce their lifespan, and they may die earlier than other people and therefore require good end-of-life care whatever age they die.• Views and opinions of people with intellectual disabilities are important in determining what is good care at the end of life.• Ethical and practical guidelines in relation to recruitment, obtaining consent, and having conversation around sensitive issues are clearly discussed in this paper. AbstractBackground: In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end-of-life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation to obtaining consent, difficulty of recruiting, and engaging and collecting relevant information. This paper aimed to provide insight into how people with intellectual disabilities could be proactively included in research which is sensitive to their unique needs.Method: This study included 13 people with mild and moderate intellectual disabilities and explored their end-of-life care needs from their perspectives. After obtaining appropriate ethical approval, the research process was commenced. Applying the constructive grounded theory approach, data were collected and analysed by using the constant comparative method. A story from the book Am I Going to Die was used to enhance the understanding of the concepts of death and dying while collecting data.Findings: Participants with intellectual disabilities were recruited by establishing a close relationship with service providers. Capacity to consent and informed consent were fostered by carefully explaining the research process through easy-to-read information, and the data collection process was successfully completed by having a person-centred approach.Conclusion: People with intellectual disabilities can be successfully included in research. This is possible when their diverse needs are carefully considered, and appropriately developed protocols which meet their needs in relation to their capacities and abilities are utilised. This approach requires a flexible and inclusive research process. | 71CITHAMBARAM eT Al.

Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.Methods: The study reported here aimed to find out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities. Conclusion:The findings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

Accessible summary Professionals are reluctant to discuss sensitive information with people with intellectual disabilities. People with intellectual disabilities and families wish to engage in end‐of‐life discussions. People with intellectual disabilities expressed how they could handle bad news and they felt that this information could be used to help make choices. People with intellectual disabilities and families want to develop a plan based on their choices and wishes and there is a need to respect this at the end of life. Abstract BackgroundRecently, more and more people with intellectual disabilities have been dying from life‐limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for decision‐making to occur at the end of life. Therefore, this study aimed to explore the perceptions of people with intellectual disabilities and families in terms of the information that is needed as part of end‐of‐life decision‐making. Materials and MethodsA qualitative approach was employed to explore the information needed by, and the decision‐making ability of, people with intellectual disabilities at the end‐of‐life phase. One‐to‐one interviews were carried out with nineteen people following the obtaining of ethical approval. The constant comparative method was used to analyse the data. ResultsIt was found that people with intellectual disabilities were comfortable with, and wished to know about, what was happening in their lives, including the existence of life‐limiting conditions, so that they would be able to create a good plan for their future care. It was also expressed how it was essential to create a plan of care that allowed professionals to provide excellent care and use of which prevented the occurrence of any ambiguity. ConclusionsThe study found that people with intellectual disabilities, especially those with mild and moderate, are able to handle complex and sensitive information and make decisions for themselves regarding their care when adequate support is in place.

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