”Being ill was the easy part”: exploring cancer survivors’ reactions to perceived challenges in engaging with primary healthcare

References

• Aase, A. S., Ingebretsen, T. K., Hauken, M. A. (2022). There should have been a more holistic approach” — a qualitative study of young adult cancer survivors’ experiences of follow-up after cancer treatment. Cancer Nursing, 45(1), E299–E308. https://doi.org/10.1097/NCC.0000000000000924
   PubMed Web of Science ®Google Scholar
• Adam, R., & Watson, E. (2018). The role of primary care in supporting patients living with and beyond cancer. Current Opinion in Supportive and Palliative Care, 12(3), 261–9. https://doi.org/10.1097/SPC.0000000000000369
   PubMed Web of Science ®Google Scholar
• Anell, A. (2015). Primärvårdens funktion, organisation och ekonomi—en litteraturöversikt. [The function, organization and economy of the primary health care sector—a literature review]. Socialdepartementet. Swedish.
   Google Scholar
• Bandura, A.-S.-E. (1978). Self-efficacy: Toward a unifying theory of behavioral change. Advances in Behaviour Research and Therapy, 1(4), 139–161. https://doi.org/10.1016/0146-6402(78)90002-4
   Google Scholar
• Beynon, T., Selman, L., Radcliffe, E., Whittaker, S., Child, F., Orlowska, D., Morgans, C., Morris, S., Harding, R. (2015). ‘We had to change to single beds because I itch in the night’: A qualitative study of the experiences, attitudes and approaches to coping of patients with cutaneous T‐cell lymphoma. The British Journal of Dermatology, 173(1), 83–92. https://doi.org/10.1111/bjd.13732
   PubMed Web of Science ®Google Scholar
• Blane, D. N., & Lewandowska, M. (2019). Living with cancer and multimorbidity: The role of primary care. Current Opinion in Supportive and Palliative Care, 13(3), 213–219. https://doi.org/10.1097/SPC.0000000000000454
   PubMed Web of Science ®Google Scholar
• Blomqvist, P., & Winblad, U. (2001). Sweden. In E. Immergut, K. Anderson, C. Devitt, & T. Popic (Eds.), Health Politics in Europe: A Handbook (pp. 164–204). Oxford University Press.
   Google Scholar
• Cancerfonden. (2016). Cancerfondsrapporten 2016. [The Swedish Cancer Society Report 2016]. Swedish.
   Google Scholar
• Dossett, L. A., Hudson, J. N., Morris, M. A. M., Lee, M. C., Roetzheim, R. G., Fetters, M. D., Quinn, G. P. (2017). The primary care provider (PCP)-cancer specialist relationship: A systematic review and mixed-methods meta-synthesis. CA: A Cancer Journal for Clinicians, 67(2), 156–169. https://doi.org/10.3322/caac.21385
   PubMed Web of Science ®Google Scholar
• Earle, C. C., (2007). Surveillance after primary therapy. In P. Ganz (Ed.), Cancer Survivorship: Today and Tomorrow (pp. 43–53). Springer.
   Google Scholar
• Earle, C. C., Neville, B. A. (2004). Under use of necessary care among cancer survivors. Cancer, 101(8), 1712–1719. https://doi.org/10.1002/cncr.20560
   PubMed Web of Science ®Google Scholar
• Fitch, M. I., Nicoll, I., Lockwood, G. (2020). Cancer survivor’s perspectives on the major challenge in the transition to survivorship. Patient Education & Counseling, 103, 2361–2367. https://doi.org/10.1016/j.pec.2020.04.018
   PubMed Web of Science ®Google Scholar
• Garpenhag, L., Halling, A., Larsson, A. M., Calling, S. (2023). The role of primary care in the cancer care continuum: A qualitative study of cancer survivors’ experiences. Scandinavian Journal of Primary Health Care, 41(1), 13–22. https://doi.org/10.1080/02813432.2022.2145848
   PubMed Web of Science ®Google Scholar
• Glasdam, S., Bjerström, C., & Engberg de Carvalho, C. (2020). Coping strategies among patients with malignant lymphoma–A qualitative study from the perspectives of Swedish patients. European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society, 44, 101693. https://doi.org/10.1016/j.ejon.2019.101693
   PubMed Web of Science ®Google Scholar
• Handberg, C., Maribo, T. (2020). Why cancer survivorship care needs assessment may lead to no clear patient pathway–Based on patients’ experiences and perspectives. European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society, 48, 101824. https://doi.org/10.1016/j.ejon.2020.101824
   PubMed Web of Science ®Google Scholar
• Handberg, C., Thorne, S., & Maribo, T. (2018). When a policy decision meets practice realities: The case of cancer survivorship care and rehabilitation needs assessment. European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society, 33, 70. https://doi.org/10.1016/j.ejon.2018.01.010
   PubMed Web of Science ®Google Scholar
• Henage, C. B., Ferreri, S. P., Schlusser, C., Hughes, T. D., Armistead, L. T., Kelley, C. J., Niznik, J. D., Busby-Whitehead, J., Roberts, E. (2021). Transitioning focus group research to a videoconferencing environment: A descriptive analysis of interactivity. Pharmacy, 9(3), 117. https://doi.org/10.3390/pharmacy9030117
   Web of Science ®Google Scholar
• Henoch, I., Danielson, E. (2009). Existential concerns among patients with cancer and interventions to meet them: An integrative literature review. Psycho-Oncology, 18(3), 225–239. https://doi.org/10.1002/pon.1424
   PubMed Web of Science ®Google Scholar
• Hewitt, M. E., Bamundo, A., Day, R., Harvey, C. (2007). Perspectives on post-treatment cancer care: Qualitative research with survivors, nurses, and physicians. Journal of Clinical Oncology, 25(16), 2270–2273. https://doi.org/10.1200/JCO.2006.10.0826
   PubMed Web of Science ®Google Scholar
• Hoekstra, R. A., Heins, M. J., Korevaar, J. C. (2014). Health care needs of cancer survivors in general practice: A systematic review. BMC Family Practice, 13(15), 94. https://doi.org/10.1186/1471-2296-15-94
   Google Scholar
• Janlöv, N., Blume, S., Glenngård, A. H., Hanspers, K., Anell, A., & Merkur S. (2023). Sweden: Health system review. Health Systems in Transition, 25(4), i–198.
   Google Scholar
• Jefford, M., Karahalios, E., Pollard, A., Baravelli, C., Carey, M., Franklin, J., Aranda, S., Schofield, P. (2008). Survivorship issues following treatment completion—results from focus groups with Australian cancer survivors and health professionals. Journal of Cancer Survivorship: Research and Practice, 2(1), 20–32. https://doi.org/10.1007/s11764-008-0043-4
   PubMedGoogle Scholar
• King, N. (2004). Using templates in the thematic analysis of text. In C. Cassell & G. Symon (Eds.), Essential Guide to Qualitative Methods in Organizational Research (pp. 257–270). Sage publications.
   Google Scholar
• Koch, G., Wakefield, B. J., & Wakefield, D. S. (2015). Barriers and facilitators to managing multiple chronic conditions: A systematic literature review. Western Journal of Nursing Research, 37(4), 498–516. https://doi.org/10.1177/0193945914549058
   PubMed Web of Science ®Google Scholar
• Lashbrook, M. P., Valery, P. C., Knott, V., Kirshbaum, M. N., Bernardes, C. M. (2018). Coping strategies used by breast, prostate, and colorectal cancer survivors: A literature review. Cancer Nursing, 41(5), E23–E39. https://doi.org/10.1097/NCC.0000000000000528
   PubMed Web of Science ®Google Scholar
• Lawn, S., Fallon-Ferguson, J., & Koczwara, B. (2017). Shared care involving cancer specialists and primary care providers–What do cancer survivors want?. Health Expectations, 20(5), 1081–1087. https://doi.org/10.1111/hex.12551
   PubMed Web of Science ®Google Scholar
• Lee, Y. J., Shin, S. J., Wang, R. H., Lin, K.-D., Lee, Y.-L., Wang, Y.-H. (2016). Pathways of empowerment perceptions, health literacy, self-efficacy, and self-care behaviors to glycemic control in patients with type 2 diabetes mellitus. Patient Education & Counseling, 99(2), 287–294. https://doi.org/10.1016/j.pec.2015.08.021
   PubMed Web of Science ®Google Scholar
• Liu, C., Wang, D., Liu, C., Jiang, J., Wang, X., Chen, H., Ju, X., Zhang, X. (2020). What is the meaning of health literacy? A systematic review and qualitative synthesis. Family Medicine Computing Health, 8(2), e000351. https://doi.org/10.1136/fmch-2020-000351
   PubMed Web of Science ®Google Scholar
• Llewellyn, A., Howard, C., & McCabe, C. (2019). An exploration of the experiences of women treated with radiotherapy for breast cancer: Learning from recent and historical cohorts to identify enduring needs. European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society, 39, 47–54. https://doi.org/10.1016/j.ejon.2019.01.002
   PubMed Web of Science ®Google Scholar
• National Cancer Institute. (n.d.). Survivor. NCI Dictionary of Cancer Terms. National Cancer Institute. Retrieved May 27, 2022 from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivor
   Google Scholar
• Nekhlyudov, L., O’Malley, D. M., Hudson, S. V. (2017). Integrating primary care providers in the care of cancer survivors: Gaps in evidence and future opportunities. The Lancet Oncology, 18(1), e30–e38. https://doi.org/10.1016/S1470-2045(16)30570-8
   PubMed Web of Science ®Google Scholar
• Nilsson, M., From, I., & Lindwall, L. (2019). The significance of patient participation in nursing care–a concept analysis. Scandinavian Journal of Caring Sciences, 33(1), 244–251. https://doi.org/10.1111/scs.12609
   PubMed Web of Science ®Google Scholar
• Nutbeam, D., Lloyd, J. E. (2021). Understanding and responding to health literacy as a social determinant of health. Annual Review of Public Health, 42(1), 159–173. https://doi.org/10.1146/annurev-publhealth-090419-102529
   PubMedGoogle Scholar
• Osborn, C. Y., Cavanaugh, K., Wallston, K. A., Rothman, R. L. (2010). Self-efficacy links health literacy and numeracy to glycemic control. Journal of Health Communication, 15(Suppl 2), 146–158. https://doi.org/10.1080/10810730.2010.499980
   PubMed Web of Science ®Google Scholar
• Porter, J., Boyd, C., Skandari, M. R., Laiteerapong, N. (2023). Revisiting the time needed to provide adult primary care. Journal of General Internal Medicine, 38(1), 147–155. https://doi.org/10.1007/s11606-022-07707-x
   PubMed Web of Science ®Google Scholar
• Rajah, R., Hassali, M. A. A., Ching Jou, L., Murugiah, M. K. (2018). The perspective of healthcare providers and patients on health literacy: A systematic review of the quantitative and qualitative studies. Perspectives in Public Health, 138(2), 122–132. https://doi.org/10.1177/1757913917733775
   PubMed Web of Science ®Google Scholar
• Regionala cancercentrum i samverkan. (2021). Cancerrehabilitering: Nationellt vårdprogram [Cancer rehabilitation: National care program]. Regionala cancercentrum i samverkan. Swedish.
   Google Scholar
• Richardson, A., Addington-Hall, J., Amir, Z., Foster, C., Stark, D., Armes, J., Brearley, S. G., Hodges, L., Hook, J., Jarrett, N., Stamataki, Z., Scott, I., Walker, J., Ziegler, L., Sharpe, M. (2011). Knowledge, ignorance and priorities for research in key areas of cancer survivorship: Findings from a scoping review. British Journal of Cancer, 105(Suppl S1), S82–S94. https://doi.org/10.1038/bjc.2011.425
   PubMedGoogle Scholar
• Rupert, D. J., Poehlman, J. A., Hayes, J. J., Ray, S. E., Moultrie, R. R. (2017). Virtual versus in-person focus groups: Comparison of costs, recruitment, and participant logistics. Journal of Medical Internet Research, 19(3), e80. https://doi.org/10.2196/jmir.6980
   PubMed Web of Science ®Google Scholar
• Rutherford, C., Bora, K., White, K., Ostroff, C., Acret, L., Tracy, M., Mahadeva, J., Willcock, S. M. (2023). Experiences of colorectal cancer survivors in returning to primary coordinated healthcare following treatment. Australian Journal of Primary Health, 29(5), 463–470. https://doi.org/10.1071/PY22201
   PubMed Web of Science ®Google Scholar
• Samordnad utveckling för god och nära vård. (2018). God och nära vård – En primärvårdsreform (SOU 2018:39). [Good quality, local health care – a primary care reform]. Socialdepartementet. Swedish.
   Google Scholar
• Sandelowski, M. (2000). Whatever happened to qualitative description?. Research in Nursing & Health, 23(4), 334–340. https://doi.org/10.1002/1098-240x(200008)23:4<334:aid-nur9>3.0.co;2-g
   PubMed Web of Science ®Google Scholar
• Socialdepartementet. (2009). En nationell cancerstrategi för framtiden (SOU 2009:11). [A national cancer strategy for the future]. Swedish.
   Google Scholar
• Socialstyrelsen. (2023). Hälso- och sjukvårdens arbete med sjukskrivning och rehabilitering: En lägesbeskrivning baserad på enkäter till läkare och regionledning hösten 2022 [The healthcare services’ work with illness certification and rehabilitation: A report based on surveys to physicians and regional management in the fall of 2022]. Swedish.
   Google Scholar
• Sørensen, K., Van Den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., Brand, H. (2012). Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health, 12(1), 80. https://doi.org/10.1186/1471-2458-12-80
   PubMed Web of Science ®Google Scholar
• Stein, K. D., Syrjala, K. L., Andrykowski, M. A. (2008). Physical and psychological long-term and late effects of cancer. Cancer, 112(11 Suppl), 2577–2592. https://doi.org/10.1002/cncr.23448
   PubMed Web of Science ®Google Scholar
• Sung, H., Ferlay, J., Siegel, R. L., Laversanne, M., Soerjomataram, I., Jemal, A., Bray, F. (2021). Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: A Cancer Journal for Clinicians, 71(3), 209–249. https://doi.org/10.3322/caac.21660
   PubMed Web of Science ®Google Scholar
• Sun, V., Grant, M., McMullen, C. K., Altschuler, A., Mohler, M. J., Hornbrook, M. C., Herrinton, L. J., Krouse, R. S. (2014). From diagnosis through survivorship: Health-care experiences of colorectal cancer survivors with ostomies. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 22(6), 1563–1570. https://doi.org/10.1007/s00520-014-2118-2
   PubMed Web of Science ®Google Scholar
• Tan, L., Gallego, G., Nguyen, T. T. C., Bokey, L., Reath, J. (2018). Perceptions of shared care among survivors of colorectal cancer from non-English-speaking and English-speaking backgrounds: A qualitative study. BMC Family Practice, 19(1), 134. https://doi.org/10.1186/s12875-018-0822-6
   PubMedGoogle Scholar
• Woodyatt, C. R., Finneran, C. A., & Stephenson, R. (2016). In-person versus online focus group discussions: A comparative analysis of data quality. Qualitative Health Research, 26(6), 741–749. https://doi.org/10.1177/1049732316631510
   PubMed Web of Science ®Google Scholar
• Wu, H.-S., & Harden, J. K. (2015). Symptom burden and quality of life in survivorship. Cancer Nursing, 38(1), E29–54. https://doi.org/10.1097/NCC.0000000000000135
   PubMed Web of Science ®Google Scholar