The new Research Connections series will feature original research by occupational therapy practitioners related to the experiences, culture, strengths, challenges, and/or health outcomes of underrepresented and minority populations.
Title: The Occupational Participation of Latinx Cancer Survivors and their Family Caregivers Living in Long-Term Survivorship
Author: Ricardo D. Ramirez, OTD, OTR/L
Ricardo (Ricky) D. Ramirez is a recent graduate from the post-professional Doctor of Occupational Therapy program at the University of Illinois at Chicago whose doctoral work focused on working with Latinx families affected by cancer living in survivorship. He is currently an occupational therapist at the University of Illinois Hospital & Health Sciences System.
Doctoral Committee: Susan Magasi, PhD (chair), Yolanda Suarez-Balcazar, PhD, Heidi Fischer, OTD, OTR/L
Background and Purpose
Latinx have lower cancer mortality rates but after primary cancer treatment, they report poorer health-related quality of life, physical and mental health, as well as greater unmet needs than non-Hispanic Whites (Giedzinska et al., 2004; Luckett et al., 2011; Miller et al., 2018; Moreno et al., 2019). While an increasing number of Latinx cancer survivors are projected to live in long-term survivorship, they experience participation restrictions in meaningful occupations and roles (Nápoles et al., 2017; Sleight et al., 2018). Only one study in the occupational therapy literature has specifically examined this population (Sleight, 2017). Moreover, Latinx cultural values are recognized as strengths (Bermudez & Mancini, 2013), but little is known about how these strengths are applied to participation in survivorship. Therefore, the purpose of this qualitative study was to examine the occupational participation of Latinx cancer survivors and their family caregivers using an occupational therapy lens and appreciation for cultural values.
A total of 18 semi-structured interviews were conducted with Latinx cancer survivors (n = 8), their family caregivers (n = 5), and supportive cancer care providers (n = 5). Thematic analysis was used to identify, analyze, and report major themes by two coders (Braun & Clarke, 2006). Findings indicate that Latinx cultural values—familismo, personalismo, and ser trabajador—significantly influenced survivors’ and caregivers’ survivorship experiences. Survivors experienced occupational deprivation due to the long-term effects of cancer which were exacerbated by sociopolitical, economic, and language barriers. The Latinx social environment was the largest support for survivors and caregivers. Survivors and caregivers experienced post-traumatic growth as they redefined their values, experienced familial and role growth, as well as adopted new occupations of participating in survivorship communities and health management.
Implications for Occupational Therapy Practice
For Latinx families affected by cancer, survivorship is a case of occupational injustice as they experienced common long-term cancer sequalae while navigating against a unique set of environmental barriers that further disadvantaged them to participate in daily life. Simultaneously, survivorship provided opportunities to augment social supports, mobilize cultural strengths, and expand occupational identities. To promote occupational justice, this study points to the need for the inclusion of culturally tailored occupational therapy services throughout the cancer care continuum for Latinx families affected by cancer. To do this, occupational therapy practice should embed itself in routine care where Latinx survivors receive care. Practitioners should work towards cultural competence to thoughtfully incorporate the cultural context into practice to support holistic health management. Using a strengths-based approach, occupational therapy practitioners can collaborate with Latinx families affected by cancer and survivorship communities to capitalize on their cultural strengths to facilitate both survivors’ and caregivers’ everyday participation and well-being.
Ramirez, R.D., Suarez-Balcazar, Y., Fischer, H.C., & Magasi, S.R. (2020). The occupational participation of Latinx cancer survivors and their family caregivers living in long-term survivorship. Manuscript submitted for publication.
Bermudez, J. M., & Mancini, J. A. (2013). Familias fuertes: Family resilience among Latinos. In D. S. Becvar (Ed.), Handbook of Family Resilience (pp. 215–227). https://doi.org/10.1007/978-1-4614-3917-2_13
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
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Luckett, T., Goldstein, D., Butow, P. N., Gebski, V., Aldridge, L. J., McGrane, J., Ng, W., & King, M. T. (2011). Psychological morbidity and quality of life of ethnic minority patients with cancer: A systematic review and meta-analysis. The Lancet Oncology, 12(13), 1240–1248. https://doi.org/10.1016/S1470-2045(11)70212-1
Miller, K. D., Goding Sauer, A., Ortiz, A. P., Fedewa, S. A., Pinheiro, P. S., Tortolero-Luna, G., Martinez-Tyson, D., Jemal, A., & Siegel, R. L. (2018). Cancer statistics for Hispanics/Latinos, 2018. CA: A Cancer Journal for Clinicians, 68(6), 425–445. https://doi.org/10.3322/caac.21494
Moreno, P. I., Ramirez, A. G., San Miguel-Majors, S. L., Castillo, L., Fox, R. S., Gallion, K. J., Munoz, E., Estabrook, R., Perez, A., Lad, T., Hollowell, C., & Penedo, F. J. (2019). Unmet supportive care needs in Hispanic/Latino cancer survivors: Prevalence and associations with patient-provider communication, satisfaction with cancer care, and symptom burden. Supportive Care in Cancer, 27(4), 1383–1394. https://doi.org/10.1007/s00520-018-4426-4
Nápoles, A. M., Ortiz, C., Santoyo-Olsson, J., Stewart, A. L., Lee, H. E., Duron, Y., Dixit, N., Luce, J., & Flores, D. J. (2017). Post-treatment survivorship care needs of Spanish-speaking Latinas with breast cancer. The Journal of Community and Supportive Oncology, 15(1), 20–27. https://doi.org/10.12788/jcso.0325
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