Youth who are both medically fragile and developmentally disabled (MF/DD) and their families face daunting challenges as they approach adulthood. These youth require ongoing skilled care and monitoring to survive;yet, because of their developmental disabilities, they will not to be able to independently provide that care for themselves. Therefore, families must make critical decisions to assure the youth's health, safety, and well-being. Important priorities for planning include: deciding where and with whom youth will live, assuring continuity of skilled care and monitoring, developing a plan for transition from child-focused health care to adult-oriented care, establishing stable income and health insurance, and arranging for ongoing meaningful activities and social opportunities that facilitate a high quality of life after the youth leave high school. Planning for the transition to adulthood is a high priority for the Maternal Child Health Bureau, health care providers (HCPs), and educators, yet currently few youth with chronic conditions are receiving support for transition. Youth who are MF/DD receive special education services and federal law requires that schools incorporate transition planning into Individual Educational Plans (lEPs) starting by age 14. Culture will greatly influence experiences during transition, including family goals, priorities, plans, and decision-making;however, little is known about the impact of culture during this critical period. In the proposed study, investigators will explore transition in a diverse sample of families raising youth who are MF/DD.
Aims are: 1. Describe the meanings of the transition to adulthood, in families raising youth who are MF/DD, and resulting planning and decision-making processes, at three age stages of adolescent development. 2. Discover how services, programs, and resources available through schools impact families'planning and decision making for transition, 3. Explore and describe planning processes for health care transitions used by families and HCPs, and 4. Explore and analyze consequences of raising a youth who is MF/DD for youth and family development and members'roles and responsibilities. A descriptive, comparative field study, using ethnographic methods of interview and observation, will be conducted to explore transition planning and decision-making in 60 families raising youth who are MF/DD. To follow the trajectory of planning during adolescence and young adulthood, families of 20 youth in each of 3 age groups, 14-17 years, 18-21 years, and 22-25 years, will participate. Data collection will include interviews with parents, HCPs, and educators, interviews and internet communications with youth, and observations of the home and lEPs. Findings will provide a foundation for development of targeted interventions and policies that improve transition support services to facilitate youth and family well-being.
| Okumura, Megumi J; Saunders, Mara; Rehm, Roberta S (2015) The Role of Health Advocacy in Transitions from Pediatric to Adult Care for Children with Special Health Care Needs: Bridging Families, Provider and Community Services. J Pediatr Nurs 30:714-23 |
| Rehm, Roberta S; Fisher, Lucille T; Fuentes-Afflick, Elena et al. (2013) Parental advocacy styles for special education students during the transition to adulthood. Qual Health Res 23:1377-87 |
| Rehm, Roberta S; Fuentes-Afflick, Elena; Fisher, Lucille T et al. (2012) Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability. ANS Adv Nurs Sci 35:E57-72 |
