Self-management in Youth and Young Adults With Spina Bifida: Associations With Caregiver Expectation and Attention-Deficit/Hyperactivity Disorder Symptoms.

Purpose: To determine whether caregiver expectation and symptoms of attention deficit/hyperactivity disorder (ADHD) were significantly associated with self-management behavior in a sample of youth and young adults with spina bifida (SB), while accounting for several other condition-related and sociodemographic factors.

Methods: Participants were drawn from clinical cases seen through a multidisciplinary outpatient SB clinic at a children's hospital between 2022 and 2023. Participants included 52 youth and young adults younger than 21 years diagnosed with SB. Caregiver report of youth and young adult self-management behavior and caregiver expectation were obtained using the Kennedy Krieger Independence Scales-Spina Bifida Version (KKIS-SB). Caregiver report of youth and young adult ADHD symptoms were obtained using the National Institute for Children's Health Quality Vanderbilt Assessment Scale-Parent Version.

Results: Caregiver expectation and symptoms of ADHD were significantly associated with self-management behaviors in youth and young adults with SB, including the ability to initiate daily self-care and home living routines independently and the ability to use prospective memory to complete tasks that are needed for good health. More ADHD symptoms were associated with poorer ratings of self-management behavior and higher caregiver expectation was associated with better ratings of self-management behavior.

Conclusion: The findings of this study suggest that caregiver expectations and co-occurring neurocognitive challenges may be influential when considering self-management behaviors in youth and young adults with SB. Family-based interventions that target caregiver perceptions and behaviors and provide psychoeducation about neurocognitive challenges as they relate to self-management behaviors may be an important target for future research.