IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v20y2023i21p6983-d1268622.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/20/21/6983/pdf
    Download Restriction: no

    File URL: https://www.mdpi.com/1660-4601/20/21/6983/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Ragnhild Nes & Lars Hauge & Tom Kornstad & Petter Kristensen & Markus Landolt & Leif Eskedal & Lorentz Irgens & Margarete Vollrath, 2014. "The Impact of Child Behaviour Problems on Maternal Employment: A Longitudinal Cohort Study," Journal of Family and Economic Issues, Springer, vol. 35(3), pages 351-361, September.
    2. Jong Eun Park & So Young Kim & Se Hee Kim & Eun Ju Jeoung & Jong Hyock Park, 2020. "Household Food Insecurity: Comparison between Families with and without Members with Disabilities," IJERPH, MDPI, vol. 17(17), pages 1-16, August.
    3. Park, Keunhyun & Chamberlain, Brent & Song, Ziqi & Nasr Esfahani, Hossein & Sheen, Jeff & Larsen, Teresa & Long Novack, Valerie & Licon, Carlos & Christensen, Keith, 2022. "A double jeopardy: COVID-19 impacts on the travel behavior and community living of people with disabilities," Transportation Research Part A: Policy and Practice, Elsevier, vol. 156(C), pages 24-35.
    4. Herberholz, Chantal & Phuntsho, Sonam, 2021. "Medical, transportation and spiritual out-of-pocket health expenditure on outpatient and inpatient visits in Bhutan," Social Science & Medicine, Elsevier, vol. 273(C).
    5. Hye Jin Nam & Ju Young Yoon, 2021. "Linking Health Literacy to Self-Care in Hypertensive Patients with Physical Disabilities: A Path Analysis Using a Multi-Mediation Model," IJERPH, MDPI, vol. 18(7), pages 1-15, March.
    6. Kayama, Misa & Johnstone, Christopher & Limaye, Sandhya, 2019. "Adjusting the “self” in social interaction: Disability and stigmatization in India," Children and Youth Services Review, Elsevier, vol. 96(C), pages 463-474.
    7. Cho, Minhae & Yun, Heejung & Haight, Wendy, 2020. "Courtesy stigma from the perspectives of elementary school educators in South Korea," Children and Youth Services Review, Elsevier, vol. 119(C).
    8. Han-Nu-Ri Kang & Kang-Sook Lee & JuYeon Koh & YuJin Park & HyunKyung Shin, 2021. "The Factors Associated with Attempted Smoking Cessation and Successful Four-Week Smoking Abstinence According to the Types of Disability in Seoul, Korea," IJERPH, MDPI, vol. 18(7), pages 1-14, March.
    9. Nkiruka C. Atuegwu & Mark D. Litt & Suchitra Krishnan-Sarin & Reinhard C. Laubenbacher & Mario F. Perez & Eric M. Mortensen, 2021. "E-Cigarette Use in Young Adult Never Cigarette Smokers with Disabilities: Results from the Behavioral Risk Factor Surveillance System Survey," IJERPH, MDPI, vol. 18(10), pages 1-13, May.
    10. Marjolein Thijssen & Maud J. L. Graff & Monique A. S. Lexis & Maria W. G. Nijhuis-van der Sanden & Kate Radford & Pip A. Logan & Ramon Daniels & Wietske Kuijer-Siebelink, 2023. "Collaboration for Developing and Sustaining Community Dementia-Friendly Initiatives: A Realist Evaluation," IJERPH, MDPI, vol. 20(5), pages 1-24, February.
    11. Nicola Fortune & Rosamond H. Madden & Shane Clifton, 2021. "Health and Access to Health Services for People with Disability in Australia: Data and Data Gaps," IJERPH, MDPI, vol. 18(21), pages 1-15, November.
    12. Pearse McCusker & Lauren Gillespie & Gavin Davidson & Sarah Vicary & Kevin Stone, 2023. "The United Nations Convention on the Rights of Persons with Disabilities and Social Work: Evidence for Impact?," IJERPH, MDPI, vol. 20(20), pages 1-18, October.
    13. María Inmaculada Fernández-Ávalos & María Nieves Pérez-Marfil & Rosario Ferrer-Cascales & Francisco Cruz-Quintana & Violeta Clement-Carbonell & Manuel Fernández-Alcántara, 2020. "Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study," IJERPH, MDPI, vol. 17(22), pages 1-19, November.
    14. Rosemary B. Hughes & Susan Robinson-Whelen & Carly Knudson, 2022. "Cancer Disparities Experienced by People with Disabilities," IJERPH, MDPI, vol. 19(15), pages 1-9, July.
    15. Lok Ming Tam & Kristin Hocker & Tamala David & Edith Marie Williams, 2024. "The Influence of Social Dynamics on Biological Aging and the Health of Historically Marginalized Populations: A Biopsychosocial Model for Health Disparities," IJERPH, MDPI, vol. 21(5), pages 1-20, April.
    16. James H. Rimmer, 2022. "Addressing Disability Inequities: Let’s Stop Admiring the Problem and Do Something about It," IJERPH, MDPI, vol. 19(19), pages 1-8, September.
    17. Amilon, Anna & Hansen, Kasper M. & Kjær, Agnete Aslaug & Steffensen, Tinne, 2021. "Estimating disability prevalence and disability-related inequalities: Does the choice of measure matter?," Social Science & Medicine, Elsevier, vol. 272(C).
    18. Robin G. Lanzi & Riddhi A. Modi & James Rimmer, 2023. "A Disability-Inclusive Healthcare-to-Well-Being Translational Science Framework," IJERPH, MDPI, vol. 21(1), pages 1-13, December.
    19. Eun-Young Park, 2021. "Validity and Reliability of the Caregiving Difficulty Scale in Mothers of Children with Cerebral Palsy," IJERPH, MDPI, vol. 18(11), pages 1-9, May.
    20. Dixon-Ibarra, Alicia & Nery-Hurwit, Mara & Driver, Simon & MacDonald, Megan, 2017. "Using health promotion guidelines for persons with disabilities to develop and evaluate a physical activity program for individuals with multiple sclerosis: A feasibility study," Evaluation and Program Planning, Elsevier, vol. 61(C), pages 150-159.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:20:y:2023:i:21:p:6983-:d:1268622. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.