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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
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
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