Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
Latinx cancer survivors experience worse physical and mental health during survivorship. This group's occupational participation during survivorship is a product of cultural values, environmental influences, and occupational gains and losses. To promote occupational justice, the OT profession is called to deliver culturally tailored care to capitalize on this group's strengths and prepare them for daily participation.
Primary Author and Speaker: Ricardo Daniel Ramirez
Additional Authors and Speakers: Susan Magasi
PURPOSE: After cancer treatment, Latinx cancer survivors have lower mortality rates but report poorer quality of life, physical and mental health, as well as greater unmet needs than non-Hispanic Whites (Luckett et al., 2011; Miller et al., 2018; Moreno et al., 2019). Consequently, the increasing number Latinx cancer survivors are living longer but often with significant participation restrictions (Nápoles et al., 2017). Traditional Latinx cultural values are recognized as strengths, yet little is known about how these strengths are used to promote participation of Latinx families affected by cancer. Therefore, the purpose of this study was to examine the occupational participation of Latinx cancer survivors and their family caregivers. This study was designed to answer the following research question: What is the lived experience of Latinx cancer survivors and their family caregivers living in long-term survivorship?
DESIGN: A cross-sectional, descriptive, qualitative design was used to understand the nuanced lives of adult Latinx cancer survivors and their family caregivers living in survivorship. Purposive sampling strategies through personal and professional community networks were utilized to recruit three participant types: Latinx cancer survivors living in survivorship, family caregivers, and cancer care providers.
METHOD: A total of 18 audio-recorded, semi-structured interviews were conducted with Latinx cancer survivors of varying diagnoses (n = 8), their family caregivers (n = 5), and supportive cancer care providers (n = 5). All interviews were transcribed and translated as needed. A detailed audit trail was kept and thematic analysis was used to identify, analyze, and report major themes. Transcripts were analyzed through Atlas.ti 8 software. The lead and senior authors coded the data and decided on a final set of salient themes. Peer examination was used to further enhance credibility. Survivor and caregiver data were collected until data saturation was achieved as tracked via a saturation grid.
RESULTS: Findings indicate that Latinx cultural values-including familismo, personalismo, and ser trabajador-influenced survivors' and caregivers' survivorship experiences both positively and negatively. Survivors experienced occupational deprivation due to the long-term effects of cancer which were exacerbated by sociopolitical, economic, and language barriers. Family mental health was impacted as a result of occupational deprivation. The Latinx social environment was the largest support for survivors and caregivers. Survivors and caregivers experienced post-traumatic growth as they adopted new occupations of participating in survivorship communities and health management.
CONCLUSION: For Latinx families affected by cancer, survivorship is a case of occupational injustice as they experienced common long-term cancer sequelae while navigating against a unique set of environmental barriers that further disadvantaged to participate in daily life. Simultaneously, survivorship provided opportunities to augment social supports, mobilize cultural strengths, and expand occupational identities. To promote occupational justice amongst this underserved but resilient population, the profession is called to provide culturally tailored care across the cancer care continuum to prepare Latinx families with the skills needed for everyday participation during survivorship. Using a strengths-based approach, occupational therapy practitioners can collaborate with Latinx families affected by cancer to leverage their cultural strengths to facilitate both survivors' and caregivers' participation and well-being.
References
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://do
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
