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Caregiving and Future Planning Perspectives of Siblings of Individuals with Intellectual and Developmental Disabilities: Insights from South Korea, Japan and Taiwan
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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
Caregiver Support, Burden, and Long-Term Planning among Caregivers of Individuals with Intellectual and Developmental Disabilities: A Cross-Sectional Study
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Santos, Telmo; Steinway, Caren; Mastrogiannis, Ariana; Chen, Jack; Woodward, Jason; Riddle, Ilka; Spicer, Brittany; Berens, John; Davis, Thomas; Cornacchia, Michelle; Wright, Charmaine; Lindquist, Lee A.; Jan, Sophia – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. Methods: A cross-sectional survey was distributed to caregivers of…
Descriptors: Caregivers, Long Range Planning, Health Services, Social Support Groups
Approaches to and Outcomes of Future Planning for Family Carers of Adults with an Intellectual Disability: A Systematic Review
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Brennan, Damien; McCausland, Darren; O'Donovan, Mary Ann; Eustace-Cook, Jessica; McCallion, Philip; McCarron, Mary – Journal of Applied Research in Intellectual Disabilities, 2020
Background: People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities. Method: This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning…
Descriptors: Long Range Planning, Caregivers, Family Role, Adults
Future Planning for Individuals with Intellectual and Developmental Disabilities: Perspectives of Siblings in South Korea
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Lee, Chung eun; Kim, Kyung Mee – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Future planning has emerged as a global issue for families of individuals with intellectual and developmental disabilities due to the longer lives and limited long-term services and supports in the adult disability system. While it has received greater attention, most future planning studies only included parents of individuals with…
Descriptors: Long Range Planning, Intellectual Disability, Developmental Disabilities, Siblings
Identifying Key Components of a Web-Based Long Term Care Planning Intervention for Family Caregivers of Individuals with Intellectual/Developmental Disabilities
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Chicas, Vanessa E.; Steinway, Caren; Chen, Jack; Schwartz, Matthew C.; Wright, Charmaine; Cornacchia, Michelle; Davis, Thomas W.; Berens, John C.; Riddle, Ilka; Woodward, Jason F.; Jan, Sophia – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice. Methods: We conducted focus groups with 49 primary caregivers of individuals with…
Descriptors: Caregivers, Intellectual Disability, Developmental Disabilities, Long Range Planning
Balancing Personal Wishes and Caring Capacity in Future Planning for Adults with an Intellectual Disability Living with Family Carers
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McCausland, Darren; Brennan, Damien; McCallion, Philip; McCarron, Mary – Journal of Intellectual Disabilities, 2019
Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The "Future Care Road Map" (FCRM) pilot study sought to…
Descriptors: Caring, Adults, Intellectual Disability, Caregivers
Domains of Planning for Future Long-Term Care of Adults with Intellectual and Developmental Disabilities: Parent and Sibling Perspectives
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Lindahl, Jane; Stollon, Natalie; Wu, Katherine; Liang, Angela; Changolkar, Sujatha; Steinway, Caren; Trachtenberg, Symme; Coccia, Audrey; Devaney, Maureen; Jan, Sophia – Journal of Applied Research in Intellectual Disabilities, 2019
Background: Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long-term care planning. Methods: The study team conducted interviews with parents and siblings of adults with IDD and performed…
Descriptors: Health Services, Long Range Planning, Adults, Developmental Disabilities
Planning for the Future among Older Parents of Adult Offspring with Intellectual Disability Living at Home and in the Community: A Systematic Review of Qualitative Studies
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Walker, Ruth; Hutchinson, Claire – Journal of Intellectual & Developmental Disability, 2018
Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic…
Descriptors: Parents, Older Adults, Intellectual Disability, Caregivers
"What's Going to Happen When We're Gone?" Family Caregiving Capacity for Older People with an Intellectual Disability in Ireland
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Brennan, Damien; Murphy, Rebecca; McCallion, Philip; McCarron, Mary – Journal of Applied Research in Intellectual Disabilities, 2018
Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and…
Descriptors: Foreign Countries, Intellectual Disability, Caregivers, Older Adults