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Cancer Survivors’ Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity

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  • Susan Magasi

    (Department of Occupational Therapy, University of Illinois at Chicago, 1919 W. Tailor St., Chicago, IL 60612, USA
    Department of Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Rd., Chicago, IL 60612, USA)

  • Hilary K. Marshall

    (Department of Occupational Therapy, University of Illinois at Chicago, 1919 W. Tailor St., Chicago, IL 60612, USA)

  • Cassandra Winters

    (Department of Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Rd., Chicago, IL 60612, USA)

  • David Victorson

    (Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA)

Abstract

Eliminating cancer-related disparities is a global public health priority. Approximately 40% of cancer survivors experience long-term effects of cancer which can lead to activity limitations and participation restrictions; yet discussions of disability are largely absent from clinical and research cancer health equity agendas. The purpose of this study was to explore how cancer survivors experience and make sense of the long-term disabling effects of cancer and its treatments. In this qualitative study, data were collected via in-depth semi-structured interviews with survivors of breast cancer, head and neck cancer, and sarcoma ( n = 30). Data were analyzed thematically using a 2-phase iterative process proceeding from descriptive to conceptual coding. Survivors experienced a wide range of long-term physical, sensory, cognitive, and emotional effects, that intertwined to restrict their participation in self-care, work, leisure, and social roles. While the interaction between impairments and participation restrictions meets the definition of disability; participants articulated a range of responses when asked about their disability identity, including (1) rejecting, (2) othering, (3) acknowledging, and (4) affirming. Findings may be indicative of structural and internalized ableism which can impede cancer care and survivorship. To support cancer survivors’ transition to post-treatment life, cancer care providers should implement anti-ableist practices and engage in frank discussions about cancer’s long-term impacts.

Suggested Citation

  • Susan Magasi & Hilary K. Marshall & Cassandra Winters & David Victorson, 2022. "Cancer Survivors’ Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity," IJERPH, MDPI, vol. 19(5), pages 1-17, March.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:5:p:3112-:d:765344
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    References listed on IDEAS

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    1. Khawla Loubani & Rachel Kizony & Uzi Milman & Naomi Schreuer, 2021. "Hybrid Tele and In-Clinic Occupation Based Intervention to Improve Women’s Daily Participation after Breast Cancer: A Pilot Randomized Controlled Trial," IJERPH, MDPI, vol. 18(11), pages 1-15, June.
    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. David Victorson & Gretchen Doninger & Scott Victorson & Gwen Victorson & Lars Hall & Carly Maletich & Bradley R. Corr & Kathy Scortino & Zachary Burns & Lori Allen & Ian Rosa & Kelley Quirk & Adekunle, 2021. "Psychosocial and Biological Outcomes of Immersive, Mindfulness-Based Treks in Nature for Groups of Young Adults and Caregivers Affected by Cancer: Results from a Single Arm Program Evaluation from 201," IJERPH, MDPI, vol. 18(23), pages 1-16, November.
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