Opening Doors to Using Nonprofit Community-Based Services to Better Cope With Breast Cancer: A Descriptive Interpretive Study of Women’s Experience
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Abstract
Introduction: Nonprofit community-based organizations (COs) are expected to complement specialized cancer care and help meet the needs of people living with and beyond cancer. However, nonprofit community organization (CO) services are underused by women living with and beyond breast cancer (WLWB-BC).
Objective: The objective of this study is to explore women’s experience of using CO services.
Methods: The study is designed as a qualitative study using Interpretive Description. Ten WLWB-BC with experience using CO services were recruited for individual interviews. Thematic content analysis of interview data relied on an iterative 3-cycle coding process to identify factors that affect women’s activation to use CO support services.
Results: Interviews reveal variations in women’s recognition of their need for support, in their experience of identifying COs to meet these needs, and in the process of accessing and using CO services. The concept of candidacy emerges as a determinant process in the use of CO services, influenced by the highly contextualized quality of interactions between women, cancer team professionals and COs.
Discussion and Conclusion: Integrating CO services requires more productive interactions. Our findings shed light on how WLWB-BC seek response to their needs outside specialized cancer care. An important aspect is how they see themselves as candidates for CO services and how care providers legitimate perceived needs and eligibility. Candidacy and productive interactions create a virtuous circle supporting activated and informed providers, which in turn support WLWB-BC activation in self-management and CO service utilization.
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References
Austin, J. D., Lee, E., Shelton, R. C., Hillyer, G., Schmitt, K., & Tehranifar, P. (2021). Voices of community organizations: How cancer centers can support communities in the face of COVID-19 [Abstract]. Cancer Epidemiology, Biomarkers & Prevention, 30(4), 809–809. https://doi.org/10.1158/1055-9965.epi-21-0221
Braun, V., & Clarke, V. (2022). Thematic analysis: A practical guide. Sage Publications.
Campbell, M. K., Tessaro, I., Gellin, M., Valle, C. G., Golden, S., Kaye, L., Ganz, P. A., McCabe, M. S., Jacobs, L. A., Syrjala, K., Anderson, B., Jones, A. F., & Miller, K. (2011). Adult cancer survivorship care: Experiences from the LIVESTRONG centers of excellence network. Journal of Cancer Survivorship: Research and Practice, 5(3), 271–282. https://doi.org/10.1007/s11764-011-0180-z
Canadian Cancer Society. (2022). Living with cancer: How we can help. https://cancer.ca/en/living-with-cancer/how-we-can-help
Canadian Cancer Statistics Advisory Committee in collaboration with the Canadian Cancer Society, Statistics Canada, & the Public Health Agency of Canada. (2021). Canadian Cancer Statistics 2021. Canadian Cancer Society. https://cancer.ca/Canadian-Cancer-Statistics-2021-EN
Canadian Cancer Statistics Advisory Committee in collaboration with the Canadian Cancer Society, Statistics Canada, & the Public Health Agency of Canada. (2023). Canadian Cancer Statistics 2023. Canadian Cancer Society. https://cancer.ca/Canadian-Cancer-Statistics-2023-EN
Canadian Partnership Against Cancer. (2019, July). Approaches for addressing mental health & return to work needs of cancer survivors: An environmental scan. https://s22457.pcdn.co/wp-content/uploads/2021/06/Approaches-to-addressing-mental-health-return-to-work-needs-of-cancer-survivors-an-environmental-scan.pdf
Centre intégré de santé et de services sociaux de Chaudière-Appalaches. (2016). Ressources pour les personnes atteintes de cancer et leurs proches. https://www.cisssca.com/clients/CISSSCA/Services_offerts/Cancer/Ressources/Ressources_pour_les_personnes_atteintes_de_cancer.pdf
Dixon-Woods, M., Cavers, D., Agarwal, S., Annandale, E., Arthur, A., Harvey, J., Hsu, R., Katbamna, S., Olsen, R., Smith, L., Riley, R., & Sutton, A. J. (2006). Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC medical research methodology, 6, 35. https://doi.org/10.1186/1471-2288-6-35
Ellison, L. F., & Saint-Jacques, N. (2023, January 18). Five-year cancer survival by stage at diagnosis in Canada. Health Reports, 34(1), 3–15. https://doi.org/10.25318/82-003-x202300100001-eng
Emfield Rowett, K., & Christensen, D. (2020). Oncology Nurse Navigation: Expansion of the Navigator Role Through Telehealth. Clinical journal of oncology nursing, 24(3), 24–31. https://doi.org/10.1188/20.CJON.S1.24-31
Feuerstein, M., & Nekhlyudov, L. (2018). Handbook of cancer survivorship (2nd ed.). Springer. https://doi.org/10.1007/978-3-319-77432-9
Flieger, S. P., Thomas, C. P., & Prottas, J. (2021). Improving Interorganizational Coordination Between Primary Care and Oncology: Adapting a Chronic Care Management Model for Patients With Cancer. Medical care research and review : MCRR, 78(3), 229–239. https://doi.org/10.1177/1077558719870699
Government of Canada. (2021). Charitable activities. https://www.canada.ca/en/revenue-agency/services/charities-giving/charities/operating-a-registered-charity/activities/charitable-activities.html
Haggstrom, D. A., Taplin, S. H., Monahan, P., & Clauser, S. (2012). Chronic Care Model implementation for cancer screening and follow-up in community health centers. Journal of Health Care for the Poor and Underserved, 23(3 Suppl), 49–66. https://doi.org/10.1353/hpu.2012.0131
Hébert, M., Gallagher, F., & St-Cyr Tribble, D. (2016). Not feeling sick from breast cancer: A framework on health status perceptions transition process. European journal of oncology nursing : the official journal of European Oncology Nursing Society, 22, 85–94. https://doi.org/10.1016/j.ejon.2016.04.001
Hodgkinson, K., Butow, P., Hobbs, K. M., & Wain, G. (2007). After cancer: The unmet supportive care needs of survivors and their partners. Journal of Psychosocial Oncology, 25(4), 89–104. https://doi.org/10.1300/J077v25n04_06
Howell, D., Mayer, D. K., Fielding, R., Eicher, M., Verdonck-de Leeuw, I. M., Johansen, C., Soto-Perez-de-Celis, E., Foster, C., Chan, R., Alfano, C. M., Hudson, S. V., Jefford, M., Lam, W. W. T., Loerzel, V., Pravettoni, G., Rammant, E., Schapira, L., Stein, K. D., Koczwara, B., & Global Partners for Self-Management in Cancer (2021). Management of Cancer and Health After the Clinic Visit: A Call to Action for Self-Management in Cancer Care. Journal of the National Cancer Institute, 113(5), 523–531. https://doi.org/10.1093/jnci/djaa083
Howell, D., McGowan, P., Bryant-Lukosius, D., Kirkby, R., Powis, M., Sherifali, D., Kukreti, V., Rask, S., & Krzyzanowska, M. K. (2023). Impact of a training program on oncology nurses' confidence in the provision of self-management support and 5As behavioral counseling skills. Cancers, 15(6), 1811. https://doi.org/10.3390/cancers15061811
Hui, D., Hoge, G., & Bruera, E. (2021). Models of supportive care in oncology. Current opinion in oncology, 33(4), 259–266. https://doi.org/10.1097/CCO.0000000000000733
Jacobs, L. A., & Shulman, L. N. (2017). Follow-up care of cancer survivors: challenges and solutions. The Lancet. Oncology, 18(1), e19–e29. https://doi.org/10.1016/S1470-2045(16)30386-2
Jetté, C. (2008). Les organismes communautaires et la transformation de l’État-providence : trois décennies de coconstruction des politiques publiques dans le domaine de la santé et des services sociaux. Presses de l’Université du Québec. https://extranet.puq.ca/media/produits/documents/1647_9782760519701.pdf
Jetté, C. (2017). Action communautaire, militantisme et lutte pour la reconnaissance : une réalité historique, politique et sociologique. Reflets, 23(1), 28–56. https://doi.org/10.7202/1040748ar
Johnson, F. (2015). Systematic review of oncology nurse practitioner navigation metrics. Clinical journal of oncology nursing 19(3), 308–313. https://doi.org/10.1188/15.CJON.308-313
Kamata, A., Hino, K., Kamiyama, K., & Takasaka, Y. (2022). Very Late Recurrence in Breast Cancer: Is Breast Cancer a Chronic Disease?. Cureus, 14(3), e22804. https://doi.org/10.7759/cureus.22804
Kemp, E. B., Geerse, O. P., Knowles, R., Woodman, R., Mohammadi, L., Nekhlyudov, L., & Koczwara, B. (2022). Mapping Systematic Reviews of Breast Cancer Survivorship Interventions: A Network Analysis. Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 40(19), 2083–2093. https://doi.org/10.1200/JCO.21.02015
Knobf M. T. (2015). The transition experience to breast cancer survivorship. Seminars in oncology nursing, 31(2), 178–182. https://doi.org/10.1016/j.soncn.2015.02.006
Li, T., Nickel, B., Ngo, P., McFadden, K., Brennan, M., Marinovich, M. L., & Houssami, N. (2023). A systematic review of the impact of the COVID-19 pandemic on breast cancer screening and diagnosis. Breast (Edinburgh, Scotland), 67, 78–88. https://doi.org/10.1016/j.breast.2023.01.001
Liberati, E., Richards, N., Parker, J., Willars, J., Scott, D., Boydell, N., Pinfold, V., Martin, G., Jones, P. B., & Dixon-Woods, M. (2022). Qualitative study of candidacy and access to secondary mental health services during the COVID-19 pandemic. Social science & medicine (1982), 296, 114711. https://doi.org/10.1016/j.socscimed.2022.114711
Liberati, E. G., Gorli, M., & Scaratti, G. (2016). Invisible walls within multidisciplinary teams: Disciplinary boundaries and their effects on integrated care. Social science & medicine (1982), 150, 31–39. https://doi.org/10.1016/j.socscimed.2015.12.002
Loo, S., Mullikin, K., Robbins, C., Xiao, V., Battaglia, T. A., Lemon, S. C., Gunn, C., & TRIP Consortium (2022). Patient navigator team perceptions on the implementation of a citywide breast cancer patient navigation protocol: a qualitative study. BMC health services research, 22(1), 683. https://doi.org/10.1186/s12913-022-08090-3
Lovelace, D. L., McDaniel, L. R., & Golden, D. (2019). Long-Term Effects of Breast Cancer Surgery, Treatment, and Survivor Care. Journal of midwifery & women's health, 64(6), 713–724. https://doi.org/10.1111/jmwh.13012
Lunders, C., Dillon, E. C., Mitchell, D., Cantril, C., & Jones, J. B. (2023). The Unmet Needs of Breast Cancer Navigation Services: Reconciling Clinical Care With the Emotional and Logistical Challenges Experienced by Younger Women with Breast Cancer in a Healthcare Delivery System. Journal of patient experience, 10, 23743735231171126. https://doi.org/10.1177/23743735231171126
Mackenzie, M., Conway, E., Hastings, A., Munro, M., & O'Donnell, C. (2013). Is ‘candidacy’ a useful concept for understanding journeys through public services? A critical interpretive literature synthesis. Social Policy & Administration, 47(7), 806–825. https://doi.org/10.1111/j.1467-9515.2012.00864.x
Ministère de la Santé et des Services sociaux. (2013). Plan directeur en cancérologie - Ensemble, en réseau, pour vaincre le cancer. https://publications.msss.gouv.qc.ca/msss/fichiers/2013/13-902-02W.pdf
Ministère de la Santé et des Services sociaux. (2017). Critères d’orientation vers les soins et services psychosociaux en cancérologie. Recommandations du Comité national de l’évolution des pratiques psychosociales en cancérologie à la Direction générale de cancérologie. https://publications.msss.gouv.qc.ca/msss/fichiers/2016/16-902-24W.pdf
Mokhtari-Hessari, P., & Montazeri, A. (2020). Health-related quality of life in breast cancer patients: review of reviews from 2008 to 2018. Health and quality of life outcomes, 18(1), 338. https://doi.org/10.1186/s12955-020-01591-x
Pomey, M. P., Nelea, M. I., Normandin, L., Vialaron, C., Bouchard, K., Côté, M. A., Duarte, M. A. R., Ghadiri, D. P., Fortin, I., Charpentier, D., Lavoie-Tremblay, M., Fernandez, N., Boivin, A., Dorval, M., Desforges, M., Régis, C., Ganache, I., Bélanger, L., Rosberger, Z., Danino, M. A., … de Guise, M. (2023). An exploratory cross-sectional study of the effects of ongoing relationships with accompanying patients on cancer care experience, self-efficacy, and psychological distress. BMC cancer, 23(1), 369. https://doi.org/10.1186/s12885-023-10856-9
Provalis Research. (2020). QDA Miner 5.0.19 [software]. https://provalisresearch.com/products/qualitative-data-analysis-software/
Quebec Breast Cancer Foundation. (2024). We're here: Before, during, after breast cancer. https://rubanrose.org/en/
Quebec Cancer Foundation. (2024). We are taking action against cancer. https://cancerquebec.ca/en/
Ross, L. W., Townsend, J. S., & Rohan, E. A. (2022). Still Lost in Transition? Perspectives of Ongoing Cancer Survivorship Care Needs from Comprehensive Cancer Control Programs, Survivors, and Health Care Providers. International journal of environmental research and public health, 19(5), 3037. https://doi.org/10.3390/ijerph19053037
Sandelowski M. (1995). Sample size in qualitative research. Research in nursing & health, 18(2), 179–183. https://doi.org/10.1002/nur.4770180211
Taplin, S. H., Weaver, S., Chollette, V., Marks, L. B., Jacobs, A., Schiff, G., Stricker, C. T., Bruinooge, S. S., & Salas, E. (2015). Teams and teamwork during a cancer diagnosis: interdependency within and between teams. Journal of oncology practice, 11(3), 231–238. https://doi.org/10.1200/JOP.2014.003376
Teodoro, I. P. P., Rebouças, V. C. F., Thorne, S. E., Souza, N. K. M., Brito, L. S. A., & Alencar, A. M. P. G. (2018). Interpretive description: A viable methodological approach for nursing research. Escola Anna Nery, 22(3), e20170287. https://doi.org/10.1590/2177-9465-ean-2017-0287
Thorne, S. (2016). Interpretive Description: Qualitative Research for Applied Pratice (2nd ed.). Routledge. https://doi.org/10.4324/9781315545196
Thorne, S., Kirkham, S. R., & O'Flynn-Magee, K. (2004). The analytic challenge in Interpretive Description. International Journal of Qualitative Methods, 3(1), 1–11. https://doi.org/10.1177/160940690400300101
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International journal for quality in health care : journal of the International Society for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
Tremblay, D., Bilodeau, K., Durand, M. J., & Coutu, M. F. (2019). Translation and perceptions of the French version of the Cancer Survivor Profile-Breast Cancer (CSPro-BC): a tool to identify and manage unmet needs. Journal of cancer survivorship : research and practice, 13(2), 306–315. https://doi.org/10.1007/s11764-019-00752-2
Wagner E. H. (1998). Chronic disease management: what will it take to improve care for chronic illness?. Effective clinical practice : ECP, 1(1), 2–4.
Wagner E. H. (2019). Organizing Care for Patients With Chronic Illness Revisited. The Milbank quarterly, 97(3), 659–664. https://doi.org/10.1111/1468-0009.12416
Yeoh, E. K., Wong, M. C. S., Wong, E. L. Y., Yam, C., Poon, C. M., Chung, R. Y., Chong, M., Fang, Y., Wang, H. H. X., Liang, M., Cheung, W. W. L., Chan, C. H., Zee, B., & Coats, A. J. S. (2018). Benefits and limitations of implementing Chronic Care Model (CCM) in primary care programs: A systematic review. International journal of cardiology, 258, 279–288. https://doi.org/10.1016/j.ijcard.2017.11.057
Yli-Uotila, T., Kaunonen, M., Pylkkänen, L., & Suominen, T. (2016). The need for social support provided by the non-profit cancer societies throughout different phases in the cancer trajectory and its integration into public healthcare. European journal of oncology nursing : the official journal of European Oncology Nursing Society, 21, 97–104. https://doi.org/10.1016/j.ejon.2016.02.004
Yli-Uotila, T., Kaunonen, M., Pylkkänen, L., & Suominen, T. (2018). Adult cancer patients' perception of social support in non-profit electronic counselling services: a descriptive qualitative study. Contemporary nurse, 54(3), 304–318. https://doi.org/10.1080/10376178.2018.1502616