The transition to adulthood is a daunting one for all teens and their parents, but when the teen is developmentally disabled, this is a mammoth challenge. Today’s “Editor’s Pick” article addresses this challenge, and report the findings of a study in the San Francisco Bay Area that included 64 youth and their parents. The article, titled “Parent and Youth Priorities During the Transition to Adulthood for Youth With Special Health Care Needs and Developmental Disability,” provides evidence of the need to broaden the usual health care transition goals for special-needs youth and their families. This study was funded by the National Institute of Child Health and Human Development.
Roberta Rehm, PhD, RN, FAAN is the lead author of this article; her co-authors are Elena Fuentes-Afflick, MD, MPH; Lucille T. Fisher, PhD, RN; and Catherine A. Chesla, DNSc, RN, FAAN. Dr. Rehm shared this description of the background of the project and what they are planning for the future of the project:
The TAPS (Transition to Adulthood Plans Study) project came about because parents in my previous studies with younger children told me how concerned they were about transition to adulthood issues. Parents worried about what would happen to their children as they aged and the children got bigger and older, but still needed a lot of support. I wanted to explore what was happening around planning for the transition to adulthood and the impact of caring for teens and young adults on the families. I recognized that parents worked closely with schools and health care providers, so included teachers and primary care providers in the TAPS study.
I am particularly interested in that group of young people who will continue to need support and assistance throughout their lives, so we defined “youth with complex needs”, for this study, as teens and young adults who have both a chronic health conditions and a developmental disability. Obviously, there are many other ways this population can be defined, but for any particular study decisions must be made so that recruitment can be focused.
As we proceeded with data analysis, TAPS’ project director, Lucy Fisher, and I began partnering with a local affiliate of Family Voices (Support for Families of Children with Disabilities, a parent-run organization that provides support and education to families of children with disabilities. We designed and did some initial testing of an intervention based on what we learned in TAPS, and focused it around “Person Centered Planning” strategies. We will continue working on this intervention and hope to add other community partners and test its effectiveness in the future.