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"What Services?": Stakeholders' Perceived Unmet Support Needs for Parents With Neurological Disorders

Evelina Pituch, Rym Ben Lagha, Marjorie Aunos

    Canadian Journal of Occupational Therapy. Revue Canadienne D'Ergotherapie
    |August 9, 2023
    PubMed

    Insights

    Parents with neurological disorders need societal recognition and policy adjustments to better support their parenting journey. Addressing these needs is crucial for family well-being and creating inclusive communities.

    Area of Science:

    • Disability Studies
    • Child and Family Health
    • Public Health Policy

    Background:

    • Limited understanding exists regarding the specific needs of parents with neurological disorders caring for young children.
    • This gap highlights a critical area for research and intervention to support vulnerable families.

    Purpose of the Study:

    • To explore the unmet needs of parents with neurological disorders raising young children.
    • To identify current support systems and propose solutions for optimizing support in a Canadian context.

    Main Methods:

    • Qualitative study employing focus groups and individual interviews with diverse stakeholders including parents, spouses, clinicians, and community partners.
    • Data analysis involved inductive iterative thematic analysis of 35 participants' input.

    Main Results:

    • Key findings emphasize the need for societal recognition of parenting with disabilities.
    • Participants called for policy adjustments, expanded public programs, and the creation of barrier-free communities to support child development and family well-being.

    Conclusions:

    • Customized solutions are essential to bridge identified service gaps for parents with neurological disorders.
    • Addressing these needs is paramount for enhancing the well-being of families with disabilities.

    Keywords:
    Child rearingNeurological disordersParentalité avec une incapacitéParenting with disabilitiesQualitative researchRehabilitationrecherche qualitativeréadaptationtroubles neurologiqueséducation des enfants

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