Background: The aim of this review was to develop a theoretical framework to guide understanding of the key factors in quality end-of-life care for people with intellectual disabilities.
Method: A systematic review was conducted using a critical interpretive synthesis methodology and a 'best-fit' framework approach to develop a new theoretical framework. Databases were searched using a wide-ranging search strategy. Broad eligibility criteria were applied. Data were extracted from a purposive sample of relevant papers for the synthesis.
Results: Of 1270 retrieved records, 40 papers were selected for inclusion in the synthesis. From this, a new theoretical framework was developed comprising three themes-'a personal approach to care', 'an involved network' and 'an enabling infrastructure'.
Conclusion: The theoretical framework presented reflects the integration of a range of perspectives and provides a more developed understanding of the key factors in quality end-of-life care for people with intellectual disabilities.
Keywords: critical interpretive synthesis; end‐of‐life care; intellectual disability; quality care.
Our new framework shows that, in end‐of‐life care, the wishes of the person with intellectual disability take priority. All caregivers should be involved, trained, and work together to provide care to the person according to their wishes. Our framework includes the views of many groups of people who are interested in, and involved with, end‐of‐life care for people with intellectual disabilities. This framework is important because it shows what good end‐of‐life care for people with intellectual disabilities should look like. As a result of this work, we can identify the gaps and understand where further work is needed in terms of policy, research, and education.
© 2026 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.