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My Plan for a Good Life, Right to the End: An Accessible Approach to Advance Care Planning
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Nic McKenzie; Brigit Mirfin-Veitch; Henrietta Trip; Jennifer Conder – Journal of Intellectual & Developmental Disability, 2024
Background: People with intellectual disabilities have traditionally been excluded from Advance Care (AC) planning. This study aimed to improve access to and the quality of AC planning for this community. Method: A Participatory Action Research study was led, and participated in, by co-researchers with intellectual disabilities and disability…
Descriptors: Death, Intellectual Disability, Long Range Planning, Quality Assurance
Differences in Disease Severity and In-Hospital Mortality in Patients Hospitalised for Pneumonia with and without Intellectual Disabilities: A Matched-Pair Retrospective Cohort Study Using Nationwide In-Patient Database
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Hirose, Naoki; Morita, Kojiro; Jo, Taisuke; Hagiwara, Yasuhiro; Matsui, Hiroki; Fushimi, Kiyohide; Yasunaga, Hideo – Journal of Intellectual & Developmental Disability, 2022
Background: We examined the association between intellectual disabilities (ID) and pneumonia severity at admission. Methods: We extracted patients admitted to hospital for pneumonia from July 2010 to March 2018 using the Diagnosis Procedure Combination database. We measured pneumonia severity using the A-DROP system. After 1:4 cohort matching…
Descriptors: Intellectual Disability, Diseases, Hospitals, Patients
What Is "Fair and Reasonable"? Norms and Strategies Guiding the Distribution of Assets by Testators Who Have an Adult Child with Intellectual Disability
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Wilson, Jill; Tilse, Cheryl; White, Ben; Rosenman, Linda – Journal of Intellectual & Developmental Disability, 2021
Background: Parents making a will most commonly distribute assets evenly to adult children. How parents of an adult child with an intellectual disability use wills to plan for future care and support has had limited policy, practice and research attention. Method: This research reports on the perceptions of 20 parents regarding the impact of the…
Descriptors: Intellectual Disability, Adults, Parents, Records (Forms)
"I Hope I'll Outlive Him": A Qualitative Study of Parents' Concerns about Being Outlived by Their Child with Profound Intellectual and Multiple Disabilities
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Kruithof, Kasper; Olsman, Erik; Nieuwenhuijse, Appolonia; Willems, Dick – Journal of Intellectual & Developmental Disability, 2022
Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Parent Attitudes, Children
Mortality, Predictors and Causes among People with Intellectual Disabilities: A Systematic Narrative Review Supplemented by Machine Learning
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Tyrer, Freya; Kiani, Reza; Rutherford, Mark J. – Journal of Intellectual & Developmental Disability, 2021
Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr."…
Descriptors: Intellectual Disability, Death, Predictor Variables, Prevention
Spirituality and Social Networks of People with Intellectual and Developmental Disability
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Sango, Precious N.; Forrester-Jones, Rachel – Journal of Intellectual & Developmental Disability, 2018
Background: Researchers contend that religious and spiritual communities may provide a conduit to friendship for people with IDD. This research explored the interface between social networks and spirituality for individuals with IDD living in either a faith or non-faith based service. Method: A mixed-methods approach was used including…
Descriptors: Spiritual Development, Social Networks, Intellectual Disability, Friendship
The Experiences of Parents in Supporting Their Son or Daughter with Intellectual Disability to Learn about Dying and Death
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McMaugh, Pippa J.; Wiese, Michele Y.; Stancliffe, Roger J. – Journal of Intellectual & Developmental Disability, 2017
Background: People with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual…
Descriptors: Parent Attitudes, Parent Child Relationship, Death, Intellectual Disability
Examining Service Complexity in Children with Intellectual Disability and Mental Health Problems Who Receive Inpatient or Outpatient Services
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Lapshina, Natalia; Stewart, Shannon L. – Journal of Intellectual & Developmental Disability, 2019
Background: This study examined predictors of service complexity in children with comorbid intellectual developmental disorder (IDD) and mental health concerns. We examined whether patient type, safety risk, exposure to trauma, and family dysfunction were related to service complexity. Method: The study had a cross-sectional design, wherein…
Descriptors: Intellectual Disability, Mental Disorders, Hospitals, Clinics