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The Young Carers’ Journey: A Systematic Review and Meta Ethnography

Author

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  • Marianne Saragosa

    (OpenLab, University Health Network, Toronto, ON M4P 1E4, Canada
    Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, Toronto, ON M5T 3M7, Canada)

  • Melissa Frew

    (OpenLab, University Health Network, Toronto, ON M4P 1E4, Canada)

  • Shoshana Hahn-Goldberg

    (OpenLab, University Health Network, Toronto, ON M4P 1E4, Canada)

  • Ani Orchanian-Cheff

    (Health Sciences Library, University Health Network, Toronto, ON M5G 2C4, Canada
    The Institute for Education Research, University Health Network, Toronto, ON M4P 1E4, Canada)

  • Howard Abrams

    (OpenLab, University Health Network, Toronto, ON M4P 1E4, Canada
    General Internal Medicine, University Health Network, Toronto, ON M4P 1E4, Canada
    Department of Medicine, University of Toronto, Toronto, ON M5S 1A1, Canada)

  • Karen Okrainec

    (OpenLab, University Health Network, Toronto, ON M4P 1E4, Canada
    Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, Toronto, ON M5T 3M7, Canada
    General Internal Medicine, University Health Network, Toronto, ON M4P 1E4, Canada
    Department of Medicine, University of Toronto, Toronto, ON M5S 1A1, Canada)

Abstract

Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers’ experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers’ experience, and (2) to identify how these young carers interact with the health care system in their caregiving role. Using a meta-ethnographic synthesis, a total of 28 empirical studies met inclusion. Key findings helped inform an overarching framework of the experience of young carers as illustrated by a journey map. The journey map is a visual depiction of the stages these young carers go through when in a caregiving role framed by three themes: (1) encountering caregiving; (2) being a young caregiver, and (3) moving beyond caregiving. The caregiving experience is perceived by young people as challenging and complex, which could be improved with more informational navigation and emotional support. Understanding these experiences provides insight into gaps in health services and potential solutions that align with the stages outlined in the journey map.

Suggested Citation

  • Marianne Saragosa & Melissa Frew & Shoshana Hahn-Goldberg & Ani Orchanian-Cheff & Howard Abrams & Karen Okrainec, 2022. "The Young Carers’ Journey: A Systematic Review and Meta Ethnography," IJERPH, MDPI, vol. 19(10), pages 1-25, May.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:10:p:5826-:d:812547
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    References listed on IDEAS

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    1. Smyth, Ciara & Cass, Bettina & Hill, Trish, 2011. "Children and young people as active agents in care-giving: Agency and constraint," Children and Youth Services Review, Elsevier, vol. 33(4), pages 509-514, April.
    2. Levine, C. & Hunt, G.G. & Halper, D. & Hart, A.Y. & Lautz, J. & Gould, D.A., 2005. "Young adult caregivers: A first look at an unstudied population," American Journal of Public Health, American Public Health Association, vol. 95(11), pages 2071-2075.
    3. Fekadu Aga & Merja Nikkonen & Jari Kylmä, 2014. "Caregiving actions: Outgrowths of the family caregiver's conceptions of care," Nursing & Health Sciences, John Wiley & Sons, vol. 16(2), pages 149-156, June.
    4. Jane Grose & Julia Frost & Janet Richardson & Heather Skirton, 2013. "Using meta‐ethnography to understand the emotional impact of caring for people with increasing cognitive impairment," Nursing & Health Sciences, John Wiley & Sons, vol. 15(1), pages 113-123, March.
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    Cited by:

    1. Bente Storm Mowatt Haugland & Mari Hysing & Børge Sivertsen, 2023. "Does It Matter Who You Provide Care for? Mental Health and Life Satisfaction in Young Adult Carers Associated with Type of Relationship and Illness Category—A National Student Survey," IJERPH, MDPI, vol. 20(5), pages 1-16, February.
    2. Elizabeth Olson & Leiha Edmonds, 2023. "“Caregiving Youth” and the Patchwork History of Recognition in the United States," IJERPH, MDPI, vol. 20(20), pages 1-15, October.
    3. Francesco Barbabella & Lennart Magnusson & Licia Boccaletti & Giulia Casu & Valentina Hlebec & Irena Bolko & Feylyn Lewis & Renske Hoefman & Rosita Brolin & Sara Santini & Marco Socci & Barbara D’Amen, 2023. "Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project," IJERPH, MDPI, vol. 20(6), pages 1-20, March.

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