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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, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, 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, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada
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  • Elisabeth Wright
    Affiliations
    Department of Psychiatry, Women's College Hospital, 76 Grenville St, M5S 1B2, Toronto, ON, Canada

    Department of Psychiatry, University of Toronto, 27 King's College Cir, M5S 1A1, Toronto, ON, Canada
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  • Kathy Netten
    Affiliations
    Division of Paediatric Medicine, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada
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  • Ashley Edwards
    Affiliations
    Division of Paediatric Medicine, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada
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  • Julie Rose
    Affiliations
    SickKids Family Advisory Network, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada
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  • Simone Vigod
    Affiliations
    Department of Psychiatry, Women's College Hospital, 76 Grenville St, M5S 1B2, Toronto, ON, Canada

    Department of Psychiatry, University of Toronto, 27 King's College Cir, M5S 1A1, Toronto, ON, Canada
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  • Eyal Cohen
    Affiliations
    Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada

    Division of Paediatric Medicine, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada

    Department of Paediatrics, University of Toronto, 27 King's College Cir, M5S 1A1, Toronto, ON, Canada

    Edwin S.H. Leong Centre for Healthy Children, University of Toronto, 1 King's College Cir, M5S 1A8, Toronto, ON, Canada
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  • Julia Orkin
    Correspondence
    Address for correspondence: Julia Orkin, Division of Paediatric Medicine, The Hospital for Sick Children, 555 University Avenue, Black Wing 8227, Toronto, Ontario, M5G 1X8
    Affiliations
    Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada

    Division of Paediatric Medicine, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, ON, Canada

    Department of Paediatrics, University of Toronto, 27 King's College Cir, M5S 1A1, 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 often 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 a collaboration between a psychiatrist and a paediatric complex care program. This model provides support in 3 steps: 1) early identification of distress, 2) social work support 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 paediatric team, facilitating access to psychiatric care and serving as a foundation for future integrated stepped care models.

      Keywords

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