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Direct linkLee, 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
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
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
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
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
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
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
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
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
Ira, Vanessa B. – Exceptional Parent, 2012
The reality is sobering. According to a report published on the online site of Children's Hospital Boston, about 57,000 babies weighing less than 1,500 grams (3 pounds, 4 ounces) are born annually in the United States. With medical advances, as of 2005, survival of these frail infants has increased from about 20 percent 15 years ago to nearly 90…
Descriptors: Long Range Planning, Disabilities, Caregivers, Money Management
Hewitt, Amy; Lightfoot, Elizabeth; Bogenschutz, Matthew; McCormick, Katey; Sedlezky, Lori; Doljanac, Robert – Journal of Family Social Work, 2010
Future life planning is a growing concern among families with children with disabilities. This article presents a needs assessment evaluating feasibility of a new model for future life planning for family caregivers, Lifetime Assistance, which will provide ongoing planning and monitoring for individuals with intellectual and developmental…
Descriptors: Needs Assessment, Mental Retardation, Focus Groups, Quality of Life
Heller, Tamar; Caldwell, Joe – Mental Retardation: A Journal of Practices, Policy and Perspectives, 2006
A peer support intervention was developed to support aging caregivers and adults with developmental disabilities in planning for the future. The intervention consisted of a legal/financial training session followed by five additional small-group workshops. Pretest and 1-year follow-up surveys were conducted with 29 families participating in the…
Descriptors: Aging (Individuals), Caregivers, Adults, Developmental Disabilities
