AUTHOREA
Log in Sign Up Browse Preprints
LOG IN SIGN UP
Dercia Materula
Dercia Materula

Public Documents 1
Narratives: Neurodivergent Children
Dercia Materula
Genevieve  Currie

Dercia Materula

and 12 more

January 30, 2024
Introduction: Without a care coordination mechanism, caregivers of neurodivergent children coordinate care across various complex systems in addition to caregiving responsibilities. This study aimed to understand the needs of families with neurodivergent children before entering a care coordination program. Methods: Using a convergent parallel design close-ended questionnaires and semi-structured interviews captured caregiver-reported quality of life, care integration, and resource use of 67 families. Results: Over 50% of respondents lacked access to neurodiversity related support services mainly due to information and coordination challenges. Caregivers were excluded from care planning and dealt with a fragmented system. Financial losses, social isolation, and mental health issues caused by lack of support, negatively impacted caregiver quality of life. Discussion: To improve quality of life outcomes for this demographic, this study recommends that implementing a care coordination program needs to consider the high health, educational, and social needs of families with neurodivergent children.

| Powered by Authorea.com

  • Home