Purpose: With advances in pediatric health care, many adolescents with complex chronic neurological conditions live well into adulthood. As such, the movement toward adult health care services is an expected and desired outcome of pediatric care. When the young adult has an intellectual impairment in addition to a complex chronic neurological condition, parental involvement is critical in the transition process, as these young adults are unable to make informed decisions independently and require significant guidance from caregivers. Thus, the transition process should address not only the direct health care needs of the young adult, but also the needs and concerns of the parents who are instrumental in guiding that process. The objective of this study was to identify salient issues confronting these parents.
Methods: A qualitative interpretive design was used to gain an in-depth understanding of parents'perceptions of their young adults' transition process from a pediatric to an adult health care setting. Data were analyzed using the constant comparative method, in which interview data were simultaneously collected and analyzed throughout the data collection process. Purposive sampling was used to interview 17 parents of 11 young adults who had transitioned to an adult health care setting.
Results: Findings suggest that parents perceived a tremendous sense of abandonment from the heath care team during the transition process. They experienced a sense of loss, fear and uncertainty, as they navigated the transition of their young adult. Parents believed that what hindered the transition process was a lack of sufficient coordination within the health care system, the vulnerability of the young adult at the time of transition, the lack of appropriate resources in the adult health care system given the unique and multifaceted needs of the young adult, and their own tenuous health status. The transition process was felt to be facilitated by the parent's resourcefulness, family support and ability to establish new relationships within the adult health care setting.
Conclusions: This study has provided a greater understanding of parental perceptions of transition care for young adults with a complex chronic neurological disorder who have an intellectual impairment. The emotional toll on the parents is tremendous and requires thoughtful consideration when planning the transition process for these young adults. Although all parents acknowledged the hardships and adversity they faced during the process were immense, they all felt that with better guidance and improved resources, the experience for future families could be a positive and satisfying experience.