Beth Marks1, Jasmina Sisirak, Kueifang Hsieh. 1. Rehabilitation Research and Training Center on Aging with Developmental Disabilities and Department of Disability and Human Development, University of Illinois at Chicago, Chicago, IL 60608-6904, USA. bmarks1@uic.edu
Abstract
BACKGROUND: This article summarizes the proceedings of the Health Services, Health Promotion, and Health Literacy work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living." Participants aimed to identify unmet needs related to health and health care and to determine training, research, and policy needs addressing the demands for increasing health care services and resources, end-of-life and palliative care, and health literacy. METHODS: Key issues addressed included (1) major health-related disparities for adults with intellectual and developmental disabilities (I/DD); (2) the impact of internal and external factors on health care services and resources, end-of-life and palliative care, and health literacy for adults with I/DD; and (3) frameworks that can be used for understanding and promoting health care services and resources, end-of-life and palliative care, and health literacy. RESULTS: Group participants identified research and practice needs related to primary care, health promotion, disease prevention, illness care, end-of-life issues, and palliative care. CONCLUSIONS: Health care services for adults with I/DD may occur in a variety of settings including community-based programs, private practices, and community-based agencies supporting persons with disabilities. Major gaps relate to health disparities due to underdiagnosis, misdiagnosis, less chance of receiving prompt treatment, limited access to providers, lack of research information, transportation barriers, and lack of accessible medical equipment. Models of care including variables related to translation, sustainability, accessibility (e.g., affordability, availability), acceptability (e.g., culturally relevant, satisfaction), and equity need to be developed.
BACKGROUND: This article summarizes the proceedings of the Health Services, Health Promotion, and Health Literacy work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living." Participants aimed to identify unmet needs related to health and health care and to determine training, research, and policy needs addressing the demands for increasing health care services and resources, end-of-life and palliative care, and health literacy. METHODS: Key issues addressed included (1) major health-related disparities for adults with intellectual and developmental disabilities (I/DD); (2) the impact of internal and external factors on health care services and resources, end-of-life and palliative care, and health literacy for adults with I/DD; and (3) frameworks that can be used for understanding and promoting health care services and resources, end-of-life and palliative care, and health literacy. RESULTS: Group participants identified research and practice needs related to primary care, health promotion, disease prevention, illness care, end-of-life issues, and palliative care. CONCLUSIONS: Health care services for adults with I/DD may occur in a variety of settings including community-based programs, private practices, and community-based agencies supporting persons with disabilities. Major gaps relate to health disparities due to underdiagnosis, misdiagnosis, less chance of receiving prompt treatment, limited access to providers, lack of research information, transportation barriers, and lack of accessible medical equipment. Models of care including variables related to translation, sustainability, accessibility (e.g., affordability, availability), acceptability (e.g., culturally relevant, satisfaction), and equity need to be developed.
Authors: Mathilde Mastebroek; Jenneken Naaldenberg; Francine A van den Driessen Mareeuw; Geraline L Leusink; Antoine Lm Lagro-Janssen; Henny Mj van Schrojenstein Lantman-de Valk Journal: Br J Gen Pract Date: 2016-08-01 Impact factor: 5.386
Authors: Han-Nu-Ri Kang; Kang-Sook Lee; JuYeon Koh; YuJin Park; HyunKyung Shin Journal: Int J Environ Res Public Health Date: 2021-03-29 Impact factor: 3.390