Cancer warriors sharing personal experiences
Narrative appropriateness in promoting cancer literacy in Kenya
DOI:
https://doi.org/10.1558/cam.18553Keywords:
Cancer Literacy, shared decision making, Health Belief Model, narratives, palliative careAbstract
Patients sharing their illness experiences can help members of the general population to adopt measures to prevent contracting similar diseases and also improve the treatment and management outcomes of those who are sick. In this study, experiences shared by cancer patients and survivors were used to establish the appropriateness of narratives in promoting cancer literacy, as well as in describing adherence to set policies on cancer treatment and management. Anchored on the Health Belief Model, this study analysed sampled Daily Nation newspaper articles sharing the experiences of cancer patients and survivors in Kenya. The data was analysed using content analysis and compared with guidelines in national policies on cancer and the Setting Perception Invitation or Information Knowledge Empathy Summarize or Strategize (SPIKES) protocol for breaking bad news. The key findings suggest that the narratives effectively captured critical aspects on cancer literacy including detection of symptoms, diagnosis, communication of results, palliative care and treatment and management. A lack of counselling before disclosing the results of cancer diagnosis and instances of absence of shared decision making in the treatment process indicated non-adherence to national policies on cancer treatment as well as the SPIKES protocol.
References
Akuoko, Cynthia P., Ernestina Armah, Theresa Sarpong, Dan Y. Quansah, Isaac Amankwaa and Daniel Boateng (2017) Barriers to early presentation and diagnosis of breast cancer among African women living in sub-Saharan Africa. PLOS ONE 12 (2): Article e0171024. https://doi.org/10.1371/journal.pone.0171024
Andersen-Hollekim, Tone, Line Melby, Kari Sand, Heidi Gilstad, Anita Das and Marit Solbjø (2021) Shared decision-making in standardized cancer patient pathways in Norway: Narratives of patient experiences. Health Expectations 24: 1780–1789. https://doi.org/10.1111/hex.13317
Awdish, Rana L. A. and Leonard L. Berry (2017) Making time to really listen to your patients. Harvard Business Review, 9 October. Online: https://hbr.org/2017/10/making-time-to-really-listen-to-your-patients
Baile, Walter F., Robert Buckman, Renato Lenzi, Gary Glober, Estella A. Beale and Andrzej P. Kudelka (2000) SPIKES – A six-step protocol for delivering bad news: Application to the patient with cancer. Oncologist 5 (4): 302–331. https://doi.org/10.1634/theoncologist.5-4-302
Barry, Michael J. and Susan Edgman-Levitan (2012) Shared decision making: Pinnacle of patient-centred care. New England Journal of Medicine 366 (9): 780–781. https://doi.org/10.1056/NEJMp1109283
Briggs, Gavin M., Peter A. Flynn, Mark Worthington Ian M. Rennie and Steven C. McKinstry (2008) The role of specialist neuroradiology second opinion reporting: Is there added value? Clinical Radiology 63 (7): 791–795. https://doi.org/10.1016/j.crad.2007.12.002
Buckman, Robert (1992) How to Break Bad News: A Guide for Health Care Professionals. Baltimore, MD: Johns Hopkins Press. https://doi.org/10.3138/9781487596989
Dobler, Claudia C., David E. Midthun and Victor M. Montori (2017) Quality shared decision making in lung cancer screening: The right process, with the right partners, at the right time and place. Mayo Clinical Proceedings 92 (11): 1612–1616. https://doi.org/10.1016/j.mayocp.2017.08.010
Fallowfield, Lesley and Valerie Jenkins (2004) Communicating sad, bad, and difficult news in medicine. Lancet 363 (9405): 312–319. https://doi.org/10.1016/S0140-6736(03)15392-5
Ferlay, Jacques, Isabelle Soerjomataram, Morten Ervik, Rajesh Dikshit, Sultan Eser, Colin Mathers, Marise Rebelo, Donald M. Parkin et al. (2013) GLOBOCAN 2012: Estimated Cancer Incidence, Mortality and Prevalence Worldwide in 2012 v1.0: IARC Cancer Base 11. Lyon, France: International Agency for Research on Cancer.
Green, Melanie C. (2006) Narratives and cancer communication. Journal of Communication 56 (S1): S163–S183. https://doi.org/10.1111/j.1460-2466.2006.00288.x
Hall, Daniel E., Allan V. Prochazka and Arron S. Fink (2012) Informed consent for clinical treatment. Canadian Medical Association Journal 184 (5): 533–540. https://doi.org/10.1503/cmaj.112120
Hillen, Marij A., Nik M. Medendorp, Joost G. Daams and Ellen M. A. Smets (2017) Patient-driven second opinions in oncology: A systematic review. Oncologist 22 (10): 1197–1211. https://doi.org/10.1634/theoncologist.2016-0429
Hinyard, Leslie J. and Matthew W. Kreuter (2007) Using narrative communication as a tool for health behaviour change: A conceptual, theoretical, and empirical overview. Health Education & Behavior 34 (5): 777–792. https://doi.org/10.1177/1090198106291963
Howard, George (1991) A narrative approach to thinking, cross-cultural psychology, and psychotherapy. American Psychologist 46 (3): 187–197. https://doi.org/10.1037/0003-066X.46.3.187
Ilinca, Stefania, Laura D. Giorgio, Paola Salari and Jane Chuma (2019) Socio-economic inequality and inequity in use of healthcare services in Kenya: Evidence from the fourth Kenya household health expenditure and utilization survey. International Journal for Equity in Health 18 (1): 1–13. https://doi.org/10.1186/s12939-019-1106-z
Institute of Medicine (2002) Speaking of Health: Assessing Health Communication Strategies for Diverse Populations. Washington, DC: National Academy Press.
Janz, Nancy K. and Marshall H. Becker (1984) The Health Belief Model: A decade later. Health Education Quarterly 11 (1): 1–47. https://doi.org/10.1177/109019818401100101
Kreuter, W. Matthew, Melanie C. Green, Joseph N. Cappella, Michael D. Slater, Meg E. Wise, Doug Storey, Eddie M. Clark, Daniel J. O’Keefe et al. (2007) Annals of Behavioral Medicine 33 (3): 221–235. https://doi.org/10.1007/BF02879904
Lopez-McKee, Gloria, Jeanette A. McNeill, Julia Bader and Pat Morales (2008) Comparison of factors affecting repeat mammography screening of low-income Mexican American women. Oncology Nursing Forum 35 (6): 941–947. https://doi.org/10.1188/08.ONF.941-947
McQueen, Amy, Matthew W. Kreuter, Bindu Kalesan and Kassandra I. Alcaraz (2011) Understanding narrative effects: The impact of breast cancer survivor stories on message processing, attitudes, and beliefs among African American women. Health Psychology 30 (6): 674–682. https://doi.org/10.1037/a0025395
Minichiello, Tracy A., David Ling and Debra K. Ucci (2007) Breaking bad news: A practical approach for the hospitalist. Journal of Hospital Medicine 2 (6): 415–421. https://doi.org/10.1002/jhm.271
Ministry of Health, Kenya (2013) National Palliative Care Guidelines. Nairobi: Ministry of Health. Online: http://guidelines.health.go.ke:8000/media/National_Palliative_Care_Guidelines.pdf
Ministry of Health, Kenya (2017) National Cancer Control Strategy 2017-2022. Nairobi: Ministry of Health. Online: https://www.health.go.ke/wp-content/uploads/2017/10/NATIONAL-CANCER-CONTROL-STRATEGY-2017-2022-KENYA-.pdf
Ministry of Health, Kenya (2019) Kenya National Cancer Treatment Protocols. Nairobi: Ministry of Health. Online: https://www.health.go.ke/wp-content/uploads/2019/09/National-treatment-Protocols-2019.pdf
Ministry of Public Health and Sanitation and Ministry of Medical Services, Kenya (2011) National Cancer Control Strategy 2011-2016. Nairobi: Ministry of Public Health and Sanitation. Online: http://guidelines.health.go.ke:8000/media/Kenya_National_Cancer_Control_Strategy.pdf
Ministry of Public Health and Sanitation and Ministry of Medical Services, Kenya (2012) National Guidelines for Prevention and Management of Cervical, Breast and Prostate Cancers. Nairobi: Ministry of Health. Online: http://guidelines.health.go.ke:8000/media/National_Guidelines_for_Prevention_and_Management_of_Cervical_Breast_and_Prostate_Cancers.pdf
Mohlin, Asa and Katarina Bernhardsson (2021) Narratives of survivorship: A study of breast cancer pathographies and their place in cancer rehabilitation. Current Oncology 28 (4): 2840–2851. https://doi.org/10.3390/curroncol28040249
Mulley, Albert G., Chris Trimble and Glyn Elwyn (2012) Stop the silent misdiagnosis: Patients’ preferences matter. British Medical Journal 345: Article e6572. https://doi.org/10.1136/bmj.e6572
Murphy, T. Sheila, Lauren B. Frank, Joyee S. Chatterjee and Lourdes Baezconde-Garbanati (2013) Narrative versus nonnarrative: The role of identification, transportation, and emotion in reducing health disparities. Journal of Communication 63 (1): 116–137. https://doi.org/10.1111/jcom.12007
Murphy, Sheila T., Lauren B. Frank, Meghan B. Moran and Paula Patnoe-Woodley (2011) Involved, transported, or emotional? Exploring the determinants of change in knowledge, attitudes, and behavior in entertainment-education. Journal of Communication 61 (3): 407–431. https://doi.org/10.1111/j.1460-2466.2011.01554.x
Muthoni, Anne and Neville Anne Miller (2010) An exploration of rural and urban Kenyan women’s knowledge and attitudes regarding breast cancer and breast cancer early detection measures. Health Care Women International 31 (90): 801–816. https://doi.org/10.1080/07399331003628453
Narayanan, Vijayakumar, Bibek Bista and Cheriyan Koshy (2010) ‘BREAKS’ Protocol for breaking bad news. Indian Journal of Palliative Care 16 (2): 61–65. https://doi.org/10.4103/0973-1075.68401
Nielsen-Bohlman, Lynn, Allison M. Panzer and David A. Kindig (eds) (2004) Health Literacy: A Prescription to End Confusion. Washington, DC: National Academic Press. https://doi.org/10.17226/10883
Nyarigoti, Naom, Quin E. Awuor and Eunice Nyamasyo (2017) The role of culture in managing the cancer crisis in Kenya. International Journal of Innovative Research and Development 6 (6): 39–44. https://doi.org/10.24940/ijird/2017/v6/i6/JUN17029
Olver, Ian, Mariko Carey, Jamie Bryant, Allison Boyes, Tiffany Evans and Rob Sanson-Fisher (2020) Second opinions in medical oncology. BMC Palliative Care 19 (1): 112. https://doi.org/10.1186/s12904-020-00619-9
Powe, Barbara D. and Ramona Finnie (2003) Cancer fatalism: The state of the science. Cancer Nursing 26 (6): 454–465. https://doi.org/10.1097/00002820-200312000-00005
Power, Emily, Cornelia H. M. Van Jaarsveld, Kirsten McCaffery, Anne Miles, Wendy Atkin and Jane Wardle (2008) Understanding intentions and action in colorectal cancer screening. Annals of Behavioral Medicine 35 (3): 285–294. https://doi.org/10.1007/s12160-008-9034-y
Rees, Charlotte E. and Peter A. Bath (2000) The information needs and source preferences of women with breast cancer and their family members: A review of the literature published between 1988 and 1998. Journal of Advanced Nursing 31 (4): 833–841. https://doi.org/10.1046/j.1365-2648.2000.01341.x
Roberts, Cleora S., Charles E. Cox, Douglas S. Reintgen, Walter F. Baile and Michael Gibertini (1994) Influence of physician communication on newly diagnosed breast cancer patients’ psychologic adjustment and decision-making. Cancer 74 (Suppl. 1): 336–341. https://doi.org/10.1002/cncr.2820741319
Rosser, Joelle I., Jennifer M. Zakaras, Sabina Hamisi and Megan J. Huchko (2014) Men’s knowledge and attitudes about cervical cancer screening in Kenya. BMC Women’s Health 14: Article 138. https://doi.org/10.1186/s12905-014-0138-1
Seifart, Carola, Mareike Hofmann, Tobias Bär, Jorge Riera Knorrenschild, Ulf Seifart and Winfried Rief (2014) Breaking bad news – What patients want and what they get: Evaluating the SPIKES protocol in Germany. Annals of Oncology 25 (3): 707–711. https://doi.org/10.1093/annonc/mdt582
Shmueli, Liora, Nadav Davidovitch, Joseph S. Pliskin, Ran D. Balicer, Igal Hekselman and Geva Greenfield (2017) Seeking a second medical opinion: Composition, reasons and perceived outcomes in Israel. Israel Journal of Health Policy Research 6 (67): 1–11. https://doi.org/10.1186/s13584-017-0191-y
Singh, Madhav, M. and Rajiv K. Agarwal (2017) Breaking bad news in clinical setting: A systematic review. Indian Journal of Applied Research 7 (12): 29–32.
Tam, Kar-Fai, Danny Ka-Leung Cheng, Tong Yow Ng and Hextan Y. S. Ngan (2005) The behaviours of seeking a second opinion from other health-care professionals and the utilization of complementary and alternative medicine in gynaecologic cancer patients. Journal of Multinational Association for Supportive Care in Cancer 13 (9): 679–684. https://doi.org/10.1007/s00520-005-0841-4
Unger, Jennifer B., Leopoldo J. Cabassa, Gregory B. Molina, Sandra Contreras and Melvin Baron (2013) Evaluation of a fotonovela to increase depression knowledge and reduce stigma among Hispanic adults. Journal of Immigrant and Minority Health 15 (2): 398–406. https://doi.org/10.1007/s10903-012-9623-5
Union for International Cancer Control. 2020. GLOBOCAN 2020: New global cancer data. Online: https://www.uicc.org/news/globocan-2020-new-global-cancer-data
Wachira, Beth W., Lucy W. Meng’anyi and Ruth G. Mbugua (2018) Knowledge, perception and uptake of prostate cancer screening: A cross-sectional study at a level III hospital in Kenya. Public Health Research 8 (4): 81–87. https://doi.10.5923/j.phr.20180804.01
World Health Organization (2018) Integrating Palliative Care and Symptom Relief into Primary Health Care: A WHO Guide to Planners, Implementers and Managers. Geneva: World Health Organization. Online: http://apps.who.int/iris
World Health Organization and Institut Català d’Oncologia Information Centre on HPV and Cervical Cancer (2010) Human Papillomavirus and Related Cancers in Kenya: Summary Report. Previously online: http://www.who.int/hpvcentre
World Health Organization Global Cancer Observatory (2021). Kenya. Online: https://gco.iarc.fr/today/data/factsheets/populations/404-kenya-fact-sheets.pdf
Published
Issue
Section
License
copyright Equinox Publishing Ltd.
