While it is valuable to gauge what health professionals think is important in transitioning care from pediatrics to adulthood, there is a gap in focusing on what the young patient will experience during this transition.
A major issue inremains a lack of continuity of care when young adults with neurodevelopmental conditions transition from pediatric to adult health care service due to a lack planning, consistency, availability of adult’s services and information about transitioning to adult care.
A team, led by Paul Shanahan, Your Healthcare CIC, added to the existing literature to focus on the transition period, while addressing the identified gap by including evidence from young adults with a neurodevelopmental condition, who have experienced this transition and their families.
The data was presented as a poster at the.
It is well-known that young adults with neurodevelopmental conditions are susceptible to poor health conditions as they transition to adulthood, often leading to anxiety, confusion, reduced support, and a complete dismissal of treatment altogether.
The researchers recruited young patients between 18-25 years old with attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and/or a learning disability in 2 London boroughs.
A total of 6 patients took part in semi-structured interviews with additional support from a family members. In addition, 5 parents or family members were interviewed on behalf of the patients if they were unable to communicate with the investigators.
The researchers used Interpretative Phenomenological Analysis (IPA) to analyze the transcripts of 10 interviews.
Overall, the researchers identified 4 themes in the transition to adult care—parents as advocates, availability of adult’s specialist health and social care services, lack of information sharing and, transition as a binary, abrupt change.
“Although young people with neurodevelopmental conditions are officially an ‘adult’ when they turn 18 years old, they may not feel or act as an adult,” the authors wrote. “They often still need the support of parents and family members when making decisions about their health care.”
Suggestions to Improve Care
The suggestions for improving this aspect of care include statutory services coordinating the transition to ensure patients are receiving appropriate information about resources and services.
The researchers also suggest giving those between 16-20 years old the option to seek pediatric or adult service contracts.
However, future research is needed to evaluate the costs and benefits of this proposal.
“In addition, we suggest a central place is needed for young people and their family members to access information about transition and the availability of health and social care services – perhaps through an online information sharing tool,” the authors wrote.
The study, “Transition From Children’s to Adult’s Health Care Services in the U.K.: Experiences of Young Adults With ADHD, ASD and/or Learning Disability,” was published online by the American Psychiatric Association.