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Caring for the Caregiver (C4C): An Integrated Stepped Care Model for Caregivers of Children With Medical Complexity

  • Author Footnotes
    # These authors contributed equally.
    Analyssa Cardenas
    Footnotes
    # These authors contributed equally.
    Affiliations
    Child Health Evaluative Sciences (A Cardenas, K Esser, E Cohen, and J Orkin), The Hospital for Sick Children, Toronto, ON, Canada
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  • Author Footnotes
    # These authors contributed equally.
    Kayla Esser
    Footnotes
    # These authors contributed equally.
    Affiliations
    Child Health Evaluative Sciences (A Cardenas, K Esser, E Cohen, and J Orkin), The Hospital for Sick Children, Toronto, ON, Canada
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  • Elisabeth Wright
    Affiliations
    Department of Psychiatry (E Wright, S Vigod), Women's College Hospital, Toronto, ON, Canada

    Department of Psychiatry (E Wright, S Vigod), University of Toronto, Toronto, ON, Canada
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  • Kathy Netten
    Affiliations
    Division of Pediatric Medicine (K Netten, A Edwards, E Cohen, and J Orkin), The Hospital for Sick Children, , Toronto, ON, Canada
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  • Ashley Edwards
    Affiliations
    Division of Pediatric Medicine (K Netten, A Edwards, E Cohen, and J Orkin), The Hospital for Sick Children, , Toronto, ON, Canada
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  • Julie Rose
    Affiliations
    SickKids Family Advisory Network (J Rose), The Hospital for Sick Children, Toronto, ON, Canada
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  • Simone Vigod
    Affiliations
    Department of Psychiatry (E Wright, S Vigod), Women's College Hospital, Toronto, ON, Canada

    Department of Psychiatry (E Wright, S Vigod), University of Toronto, Toronto, ON, Canada
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  • Eyal Cohen
    Affiliations
    Child Health Evaluative Sciences (A Cardenas, K Esser, E Cohen, and J Orkin), The Hospital for Sick Children, Toronto, ON, Canada

    Division of Pediatric Medicine (K Netten, A Edwards, E Cohen, and J Orkin), The Hospital for Sick Children, , Toronto, ON, Canada

    Department of Pediatrics (E Cohen, J Orkin), University of Toronto, Toronto, ON, Canada

    Edwin S.H. Leong Centre for Healthy Children (E Cohen), University of Toronto, Toronto, ON, Canada
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  • Julia Orkin
    Correspondence
    Address correspondence to Julia Orkin, MSc, MD, FRCPC, Division of Pediatric Medicine, The Hospital for Sick Children, 555 University Avenue, Black Wing 8227, Toronto, ON, Canada M5G 1X8.
    Affiliations
    Child Health Evaluative Sciences (A Cardenas, K Esser, E Cohen, and J Orkin), The Hospital for Sick Children, Toronto, ON, Canada

    Division of Pediatric Medicine (K Netten, A Edwards, E Cohen, and J Orkin), The Hospital for Sick Children, , Toronto, ON, Canada

    Department of Pediatrics (E Cohen, J Orkin), University of Toronto, Toronto, ON, Canada
    Search for articles by this author
  • Author Footnotes
    # These authors contributed equally.

      Abstract

      Children with medical complexity (CMC) are a medically fragile subset of children who rely on parental caregivers for substantial care needs. Caregivers of CMC often experience adverse health outcomes such as depression and anxiety, sleep deprivation, financial hardships, and social isolation. Caregivers of CMC are at risk of premature mortality, which is thought to be mediated by chronic and elevated stress, as well as psychiatric morbidity risk. Access to mental health care, where the needs of both the caregiver and child are considered, can enable caregivers to meet high caregiving demands and improve both child and caregiver outcomes. We describe the Caring for the Caregiver (C4C) model, a novel integrated stepped care model consisting of collaboration between a psychiatrist and a pediatric complex care program. This model provides support in 3 steps: 1) early identification of distress, 2) social work assessment, intervention and psychotherapy, and 3) psychiatric care, including diagnosis or medication initiation, for caregivers of CMC. This innovative model will be the first to embed support for the mental health needs of caregivers of CMC within a pediatric team, facilitating access to psychiatric care and serving as a foundation for future integrated stepped care models.

      Keywords

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