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Sarrah Thomas Persechino; Diane Morin; Cécile Bardon – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Individuals with intellectual disability or autism exhibit suicidal behaviours at an equal or greater rate than the general population, yet little is known about associated risk factors. This study explores suicidality in these populations, focusing on their understanding of suicide and death and perceptions of their direct support…
Descriptors: Suicide, Intellectual Disability, Autism Spectrum Disorders, Death
Monika Parchomiuk; Katarzyna Cwirynkalo; Agnieszka Zyta – Journal of Applied Research in Intellectual Disabilities, 2025
Background: The perception and experience of death with respect to individuals with intellectual disability are almost unexplored in the Polish context. We aimed to understand how these persons conceptualise death, understand their experiences associated with it, and the meanings they ascribe to it. Method: The study was designed and conducted…
Descriptors: Death, Comprehension, Intellectual Disability, Concept Formation
Corrina Alex Bebbington; Elizabeth Croot – Journal of Applied Research in Intellectual Disabilities, 2025
Background: People with intellectual disabilities face inequities in access to end-of-life care and inequalities in its quality and delivery. This review aimed to synthesise qualitative evidence to understand their own perspectives about what contributes to optimal end-of-life care. Methodology: Data from 93 participants in five qualitative…
Descriptors: Intellectual Disability, Terminal Illness, Death, Quality of Life
Marissa A Diaz; Fionn Crombie Angus; Jerome E Bickenbach – Journal of Applied Research in Intellectual Disabilities, 2024
Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via…
Descriptors: Intellectual Disability, Affordances, Barriers, Death
Rebecca J. Anderson-Kittow; Richard Keagan-Bull; Jo Giles; Irene Tuffrey-Wijne – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death. Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11)…
Descriptors: Family (Sociological Unit), Older Adults, Long Range Planning, Intellectual Disability
Marissa A. Diaz; Jerome E. Bickenbach; Carla Sabariego; Renaldo M. Bernard – Journal of Applied Research in Intellectual Disabilities, 2024
Background: A paucity of qualitative research on sensitive topics that focuses on participants with intellectual disabilities leaves their views unexplored. This scoping review mainly aimed to provide an overview of qualitative data collection methods used in research involving participants with intellectual disabilities to explore death and…
Descriptors: Research Methodology, Intellectual Disability, Death, Research
Paloma Aparicio; Alberto Alonso-Babarro; Raquel Barba; Fernando Moldenhauer; Carmen Suárez; Diego Real de Asúa – Journal of Applied Research in Intellectual Disabilities, 2024
Objectives: Characterise the circumstances associated with death during admission of adults with Down syndrome (DS) and to identify predictors of mortality. Patients and Methods: Observational study based on data on all emergent admissions of adults with DS to hospitals of the Spanish National Health System between 1997 and 2014. We analysed…
Descriptors: Death, Adults, Down Syndrome, Predictor Variables
Noorlandt, H. W.; Korfage, I. J.; Felet, F. M. A. J.; Aarts, K.; Festen, D. A. M.; Vrijmoeth, C.; Van Der Heide, A.; Echteld, M. A. – Journal of Applied Research in Intellectual Disabilities, 2024
Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care…
Descriptors: Intellectual Disability, Participative Decision Making, Residential Institutions, Residential Care