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Marian E. J. Breuer; Esther J. Bakker-van Gijssel; Tim Pelle; Jenneken Naaldenberg; Geraline L. Leusink – Journal of Applied Research in Intellectual Disabilities, 2025
Background: This study aims to explore patients' and their caregivers' experiences with and expectations of a medical consultation with a specialised ID physician at an outpatient ID practice. Methods: Fifteen semi-structured interviews were conducted with patients and their caregivers. Interview topics concerned (1) ID physician's knowledge and…
Descriptors: Intellectual Disability, Specialization, Caregivers, Physician Patient Relationship
Miller, Amanda L.; Frye, David; Green, Thelma; Mitchell, Cheri; Garcia, George; Huereña, Juliana; Moore, Teresa; Turnage, Vicki – Journal of Applied Research in Intellectual Disabilities, 2022
Adults with disabilities have long been at the forefront of disability advocacy in the United States. Grounded in the tenets of radical disability studies and principles of disability justice, this study explored the lived experiences of 12 adults with disabilities, including intellectual disability and developmental disabilities, with a…
Descriptors: Adults, Disabilities, Self Advocacy, Intellectual Disability
Kumaresan Cithambaram; D. Corby; Shankar Shanmugam Rajendran – Journal of Applied Research in Intellectual Disabilities, 2024
Background: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. Methods: A qualitative evidence synthesis was…
Descriptors: Foreign Countries, Intellectual Disability, Family Role, Caregivers
Lee, Chung Eun; Hagiwara, Mayumi; Chiu, Chun-Yu; Takishima, Mayu – Journal of Applied Research in Intellectual Disabilities, 2023
Background: As individuals with intellectual and developmental disabilities age, their siblings are more likely to assume caregiving responsibilities. However, little is known about experiences of East Asian siblings with respect to their caregiving and future-planning within their own country, as well as other East Asian countries. Methods: Using…
Descriptors: Caregivers, Foreign Countries, Siblings, Intellectual Disability
Rachel Abigail Harrison; Jill Bradshaw; Michelle McCarthy – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Since the introduction of austerity measures in 2008, funding for care, welfare, services and support systems in the United Kingdom has been reduced. There is little research that explores the experiences of parents of adults with intellectual disabilities and service providers regarding care, relationships and social networks in times…
Descriptors: Adults, Intellectual Disability, Economic Climate, Budgeting
Tenorio, Marcela; Aparicio, Andrés; Arango, Paulina Sofía; Fernández, Ana Karen; Fergusson, Alfonso; Turull, Jaime; Pizarro, Ricardo – Journal of Applied Research in Intellectual Disabilities, 2022
Background: People with intellectual disability in Chile face individual and collective barriers to social participation. Lack of knowledge about their rights and tools for effective self-advocacy seem to be key elements that need to be improved to facilitate participation. Method: We present PaísDI, a 16 h long manualised program created by…
Descriptors: Feasibility Studies, Program Effectiveness, Adults, Intellectual Disability
Jackie Ryan; Heather M. Brown; Anne Borden; Christina Devlin; Adam Kedmy; Austin Lee; David B. Nicholas; Sandy Thompson-Hodgetts – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Autonomy is a crucial component of self-determination, yet it is limited for Autistic individuals, especially those with co-occurring intellectual disabilities. We explored how professionals supported Autistic people with intellectual disabilities' autonomy. Materials and Methods: This qualitative study used a community-based…
Descriptors: Personal Autonomy, Adults, Self Determination, Autism Spectrum Disorders
Franklin, Laura; Theodore, Kate; Foulds, Daniel; Cooper, Mary; Mallaghan, Lisa; Wilshaw, Paul; Colborne, Alison; Flower, Emilie; Dickinson, Deborah; Lee, Joyce Nga Yu – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Parents with learning disabilities report facing a widely held 'presumption of incompetence', placing them under pressure to prove their parenting competence. In collaboration with a learning disability theatre company, an inclusive research methodology explored experiences of parenting with learning disabilities, with a specific focus…
Descriptors: Parents, Child Rearing, Social Bias, Attitudes toward Disabilities
Dykens, Elisabeth M.; Roof, Elizabeth; Hunt-Hawkins, Hailee – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Despite work on the self-identities of people with intellectual disabilities, research has yet to describe the self-perceptions of people with Prader-Willi syndrome (PWS). The perspectives of those with PWS are also important for rapidly evolving clinical trials aimed at treating symptoms of PWS. Method: Twenty-one young people with…
Descriptors: Genetic Disorders, Self Concept, Symptoms (Individual Disorders), Hunger
Watts, Paul; Kwiatkowska, Gosia; Minnion, Andy – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Multimedia Advocacy is the use of digital technology for people with intellectual disabilities as means of developing identities, being heard, connecting to family and care networks and, advocating for change. Methods: We explore principles and theories that underpin Multimedia Advocacy, mapping disciplinary approaches that have…
Descriptors: Multimedia Materials, Multimedia Instruction, Technology Uses in Education, Self Advocacy
Scior, Katrina; Cooper, Rebecca; Fenn, Kristina; Poole, Laurie; Colman, Sophie; Ali, Afia; Baum, Sandra; Crabtree, Jason; Doswell, Sophie; Jahoda, Andrew; Hastings, Richard; Richardson, Lisa – Journal of Applied Research in Intellectual Disabilities, 2022
Background: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives. Method: Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage…
Descriptors: Intellectual Disability, Social Bias, Attitudes toward Disabilities, Coping
Ong, Natalie; Long, Janet C.; Weise, Janelle; Walton, Merrilyn – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards. Method: A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic…
Descriptors: Children, Intellectual Disability, Hospitals, Safety
Rae Morris; Jennifer Christianson-Barker; Tim Stainton; Rachel Mills; Chris Rowley; John Cox; Monica Schroeder; Rachelle Hole – Journal of Applied Research in Intellectual Disabilities, 2024
Background: A multi-phase Canadian study was conducted as part of a large-scale community and academic research partnership focused on understanding and improving the employment experiences of people with intellectual disabilities. Method: This multi-method study utilized a sequential approach, using findings from qualitative interviews (n = 28)…
Descriptors: Foreign Countries, Partnerships in Education, Intellectual Disability, Developmental Disabilities

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