Caring for an Underserved Population: Helping Pediatric Patients with Disabilities Transition to Adulthood

Abstract

Improving the processes to assist adolescent patients in their transition into the adult health care community reveals the challenges encountered by adults with disabilities. A service gap between pediatric care providers and adult care providers is bridged by a program providing direct care, education, and advocacy.

Parent and Youth Priorities During the Transition to Adulthood for Youth With Special Health Care Needs and Developmental Disability

“…36-38 Nurses serve as care providers, care coordinators, and consultants for youth with health and developmental chronic conditions, and they can greatly impact transition planning and outcomes of the transition to adulthood in health care and school settings. 39 Given their professional emphasis on holistic and life-course perspectives for health and development, nurses who work with youth and families are well-positioned to adopt recently developed tools and clinical guidelines, 32,39,40 and to assist youth and families to set appropriate goals and anticipate possible further development.…”

Solid-Organ Transplantation in Childhood: Transitioning to Adult Health Care

“…Such children and their families represent an important underserved population, 5 as highlighted by the 2001 National Survey of Children With Special Health Care Needs, from which the core outcome "transition to adulthood" was reported as having the worst result (only 6% of children in the target population met this goal). 6 Although there are now policy statements and position papers [7][8][9] that call for a synchronized practical method to prepare young adults who have had a solid-organ transplant for a smooth transfer of medical care, current evidence suggests that many adolescents fail to meet this goal. A common need exists to improve the transition process, because many young adults are ill-equipped to receive care in the adult system.…”