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A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at

David Geyer, Jane M Flanagan, Brittney van de Water

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    Parental caregivers of children with medical complexity face significant home care challenges, including lack of preparedness and assuming provider roles, leading to burnout. Improved support systems and mental health resources are crucial for these families.

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    Area of Science:

    • Pediatric healthcare
    • Caregiver support systems
    • Medical complexity

    Background:

    • Home care systems present unique challenges for families.
    • Parental caregivers often manage complex medical needs of children.

    Purpose of the Study:

    • To explore the challenges faced by parental caregivers of children with medical complexity in Massachusetts.
    • To identify systemic issues impacting home care for these families.

    Main Methods:

    • Qualitative descriptive study design.
    • Interviews conducted with 11 parental caregivers.
    • Conventional content analysis of interview transcripts.

    Main Results:

    • Lack of discharge preparedness leads to emotional distress.
    • Increasing care complexity creates unanticipated challenges.
    • Parents experience psychological toll from assuming healthcare provider roles.

    Conclusions:

    • Systemic challenges and lack of support contribute to parental caregiver burnout.
    • Inadequate mental health support exacerbates caregiver difficulties.
    • System reform, research, and advocacy are needed to support parental caregivers in home care settings.