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Narratives: Neurodivergent Children
  • +10
  • Dercia Materula,
  • Genevieve Currie,
  • Xiao Yang Jia,
  • Brittany Finlay,
  • Ai-men Lau,
  • Catherine Richard,
  • Meridith Yohemas,
  • Gina Lachuk,
  • Nadine Gall,
  • Tammie Dewan,
  • Sarah MacEachern,
  • William Gibbard,
  • Jennifer Zwicker
Dercia Materula
University of Calgary
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Genevieve Currie
University of Calgary
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Xiao Yang Jia
University of Calgary
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Brittany Finlay
University of Calgary
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Ai-men Lau
University of Calgary
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Catherine Richard
Alberta Health Services
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Meridith Yohemas
Alberta Health Services
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Gina Lachuk
Alberta Health Services
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Nadine Gall
Alberta Health Services
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Tammie Dewan
Alberta Health Services
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Sarah MacEachern
Alberta Health Services
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William Gibbard
Alberta Health Services
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Jennifer Zwicker
University of Calgary

Corresponding Author:[email protected]

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Abstract

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.