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Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities

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  • Monika Novak-Pavlic

    (School of Rehabilitation Science, McMaster University, Hamilton, ON L8S 1C7, Canada
    CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON L8S 1C7, Canada)

  • Peter Rosenbaum

    (CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON L8S 1C7, Canada)

  • Briano Di Rezze

    (School of Rehabilitation Science, McMaster University, Hamilton, ON L8S 1C7, Canada
    CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON L8S 1C7, Canada)

Abstract

Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are oftentimes ‘child-centric’, wherein family members are seen only as partners in therapy or care delivery, while their own needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of service infrastructure oriented towards parent-specific needs in existing service delivery models. This concept paper highlights the known challenges associated with parenting a child with a DD and discusses the intersectionality of factors impacting parental health and well-being, with a goal of promoting more equitable, holistic, and inclusive healthcare for all family members of children with DDs.

Suggested Citation

  • Monika Novak-Pavlic & Peter Rosenbaum & Briano Di Rezze, 2023. "Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities," IJERPH, MDPI, vol. 20(21), pages 1-11, October.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:21:p:6983-:d:1268622
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    References listed on IDEAS

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    1. Kayama, Misa & Haight, Wendy, 2018. "Balancing the stigmatization risks of disability labels against the benefits of special education: Japanese parents' perceptions," Children and Youth Services Review, Elsevier, vol. 89(C), pages 43-53.
    2. Krahn, G.L. & Walker, D.K. & Correa-De-Araujo, R., 2015. "Persons with disabilities as an unrecognized health disparity population," American Journal of Public Health, American Public Health Association, vol. 105, pages 198-206.
    3. Brehaut, J.C. & Garner, R.E. & Miller, A.R. & Lach, L.M. & Klassen, A.F. & Rosenbaum, P.L. & Kohen, D.E., 2011. "Changes over time in the health of caregivers of children with health problems: Growth-curve findings from a 10-year Canadian population-based study," American Journal of Public Health, American Public Health Association, vol. 101(12), pages 2308-2316.
    4. Brehaut, J.C. & Kohen, D.E. & Garner, R.E. & Miller, A.R. & Lach, L.M. & Klassen, A.F. & Rosenbaum, P.L., 2009. "Health among caregivers of children with health problems: Findings from a Canadian population-based study," American Journal of Public Health, American Public Health Association, vol. 99(7), pages 1254-1262.
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