Family Caregivers’ Accounts of Their Understanding of Cancer and Its Effects on Patients

Authors

DOI:

https://doi.org/10.25159/2708-9355/20773

Keywords:

effects, family caregivers, patients, understanding, cancer

Abstract

Effective caregiving centres on grasping the complexities of cancer. Family caregivers are essential to supporting patients, and their knowledge of the disease and its impact on the patient can significantly influence their well-being and care. Recognising these complexities will enable social workers to enhance support systems for patients and family caregivers. In this study, which was conducted in South Africa, a qualitative research approach, utilising exploratory, descriptive and contextual research designs, was adopted, and in-depth semi-structured interviews were conducted. Ecosystems theory was used to understand the participants’ experiences. The findings revealed that family caregivers had limited knowledge of cancer, its causes and treatment. Recommendations to improve service delivery are presented.

References

Alptekin, S., G. Gönüllü, I. Yücel, and F. Yaris. 2010. “Characteristics and Quality of Life Analysis of Caregivers of Cancer Patients.” Medical Oncology 27: 607–17. https://doi.org/10.1007/s12032-009-9256-2.

Belgacem, B., C. Auclair, M. Fedor, D. Brugnon, M. Blanquet, O. Tournilhac, and L. Gerbaud. 2013. “A Caregiver Educational Program Improves Quality of Life and Burden of Cancer Patients and Their Caregivers: A Randomised Clinical Trial.” European Journal of Oncology Nursing 17: 870–6. https://doi.org/10.1016/j.ejon.2013.04.006.

Biliunaite, L. 2022. “Care for the Caregiver: Internet Interventions for the Informal Caregivers in Lithuania.” PhD diss., Linköping University. https://doi.org/10.3384/9789179291877.

Budziareck das Neves, F., P. Tuerlinckx Nogiez, S. R. Lope Guimarāes, M. Manfrin Muniz, and B. Knob Pinto. 2017. “Contradictory Decision: Reasons that Lead the Family Caregiver to Omit Cancer Diagnosis.” Journal of Nursing UFPE On Line, 11 (2): 591–600. https://10.5205/reuol.10263-91568-1-RV.1102201714.

CANSA (Cancer Association of South Africa). 2017. “Fact Sheet on Cancer.” Accessed 13 August 2018. https://cansa.org.za/files/2017/05/Fact-Sheet-Cancer-May-2017-1.pdf.

Creswell, J. W. 2014. Research design: Qualitative, Quantitative, and Mixed Methods Approaches. 4th ed. Sage.

Creswell, J. W. 2016. 30 Essential Skills for the Qualitative Researcher. 2nd ed. Sage.

Creswell, J. W., and C. N. Poth. 2018. Qualitative Inquiry and Research Design: Choosing Among Five Approaches. 4th ed. Sage.

Deacon, L., and S. J. Macdonald. 2017. Social Work Theory and Practice. Sage.

DoH (Department of Health). 2017. “National Cancer Strategic Framework for South Africa 2017–2022.” Accessed 30 October 2022. https://www.health.gov.za/wp-content/uploads/2020/11/national-cancer-strategic-framework-2017-2022-min.pdf.

Finestone, E., and J. Wishnia. 2022. “Estimating the Burden of Cancer in South Africa.” SA Journal of Oncology 6 (2022): 220. https://doi.org/10.4102/sajo.v6i0.220.

Fleishman, S. B., and C. Messner. 2015. “Cancer in Contemporary Society: Grounding in Oncology and Psychosocial Care.” In Handbook of Oncology Social Work: Psychosocial Care for People with Cancer, edited by G. Christ, C. Messner and L Behar. Oxford University Press.

Fouché, C. B. 2021. “Introduction to the Research Process.” In Research at Grass Roots: For the Social Science and Human Service Professions. 5th ed. Edited by C. B. Fouché, H. Strydom and W. J. H. Roestenburg. Van Schaik.

Frank, R. C. 2013. Fighting Cancer with Knowledge and Hope: A Guide for Patients, Families and Healthcare Providers. 2nd ed. Yale University Press.

Fusch, P. I., and L. R. Ness. 2015. “Are We There Yet? Data Saturation in Qualitative Research.” Qualitative Report 20 (9): 1408–16. https://doi.org/10.46743/2160-3715/2015.2281.

Given, B. A., Given, C. W., and P. Sherwood. 2012. “The Challenge of Quality Cancer Care for Family Caregivers.” Seminars in Oncology Nursing 28 (4): 205–12. https://doi.org/10.1016/j.soncn.2012.09.002.

Given, B. A., and S. C. Reinhard. 2017. “Caregiving at the End of Life: The Challenge for Family Caregivers.” Journal of the American Society on Aging 41 (1): 50–57. https://www.jstor.org/stable/26556266.

Glajchen, M. 2011. “Caregivers in Palliative Care: Roles and Responsibilities.” In Oxford Textbook of Palliative Social Work, edited by T. Altilio and S. Otis-Green. Oxford University Press. https://doi.org/10.1093/med/9780199739110.003.0021.

Haight, W., and E. H. Taylor. 2013. Human Behaviour for Social Work Practice: A Developmental-Ecological Framework. Lyceum Books.

Hosseinpoor, A. R., n. Bergen, and s. Chatterji. 2013. “Socio-Demographic Determinants of Caregiving in Older Adults of Low- and Middle-Income Countries.” Age and Ageing 42 (3): 330–8. https://doi.org/10.1093/ageing/afs196.

Houlihan, N. G. 2015. “A Review of Family Caregivers of Women with Breast Cancer in Iran Report High Psychological Impact Six Months After Diagnosis.” Oncology Nursing Forum 42 (2): 207–8. https://doi.org/10.1188/15.onf.207-208.

Kelly, L. E. 2014. “Radiation and Chemotherapy.” In Head and Neck Cancer: Treatment, Rehabilitation, and Outcomes. 2nd ed. Edited by E. C. Ward and M. von As-Brooks, Plural Publishing.

Ladas, E. J., and K.M. Kelly. 2012. Integrative Strategies for Cancer Patients: A Practical Resource for Managing the Side Effects of Cancer Therapy. World Scientific Publishing. https://doi.org/10.1142/9789814313247.

Langer, C. L., and C. A. Lietz. 2015. Applying Theory to Generalist Social Work Practice. John Wiley & Sons. https://doi.org/10.1002/9781394258888.

Li, Q. P., Y. W. Mak, and A. Y. Loke. 2013. “Spouses’ Experience of Caregiving for Cancer Patients: A Literature Review.” International Nursing Review 60 (2), 178–87. https://doi.org/10.1111/inr.12000.

Maree, J. E., D. Moshima, M. Ngubeni, and L. Zondi. 2018. “On Being a Caregiver: The Experiences of South African Family Caregivers Caring for Cancer Patients.” European Journal of Cancer Care 27 (2): e12801. https://doi.org/10.1111/ecc.12801.

McNarry, G., J. Allen-Collinson, and A. B. Evans. 2019. “Reflexivity and Bracketing in sociological phenomenological research: Researching the competitive swimming lifeworld.” Qualitative Research in Sport, Exercise and Health 11(1): 138–51. https://doi.org/10.1080/2159676X.2018.1506498.

Miley, K. K., M. W. O’Melia, and B. L. DuBois. 2013. Generalist Social Work Practice: An Empowering Approach. 7th ed. Pearson.

Miller, M. E. 2018. Cancer. Momentum Press.

Molassiotis, A., and M. Wang. 2022. “Understanding and Supporting Informal Cancer Caregivers.” Current Treatment Options in Oncology 23: 494–513. https://doi.org/10.1007/s11864-022-00955-3.

Nemati, S., M. Rassouli, M. Ilkhani, and A. R. Baghestani. 2018. “Perceptions of Family Caregivers of Cancer Patients About the Challenges of Caregiving: A Qualitative Study.” Scandinavian Journal of Caring Sciences 32 (1): 309–16. https://doi.org/10.1111/scs.12463.

Ngozwana, N. 2019. “Experiences of Older Adults as Caregivers During Times of Disruption in Lesotho – Implications for Adult Education.” Zeitschrift für Weiterbildungsforschung 42: 289–304. https://doi.org/10.1007/s40955-019-0127-y.

Opsomer, S., E. Lauwerier, J. de Lepeleire, and P. Pype. 2022. “Resilience in Advanced Cancer Caregiving: A Systematic Review and Meta-Synthesis.” Palliative Medicine 36 (1): 44–58. https://doi.org/10.1177/02692163211057749.

Parra, M. D., C. C. Torres, L. B. Arboleda, R. Rivera Carvajal, S. Franco, and J. Santos. 2019. “Effectiveness of an Educational Nursing Intervention on Caring Ability and Burden in Family Caregivers of Patients with Chronic Non-Communicable Diseases. A Preventive Randomized Controlled Clinical Trial.” Nursing Research and Education (Investigación y Educación en Enfermería) 37 (1). https://doi.org/10.17533/udea.iee.v37n1e04.

Parrish, M. 2014. Social Work Perspectives on Human Behaviour. 2nd ed. McGraw-Hill Education.

Pask, S., C. Pinto, K. Bristowe, L. van Vliet, C. Nicholson, C. J. Evans, R. George, K. Bailey, J. M. Davies, P. Guo, B. A. Daveson, I. J. Higginson, and F. E. M. Murtagh. 2018. “A Framework for Complexity in Palliative Care: A Qualitative Study with Patients, Family Carers and Professionals.” Palliative Medicine 32 (6): 1078–90. https://doi.org/10.1177/0269216318757622.

Planas, M., J. Álvarez-Hernández, M. León-Sanz, S. Celaya-Pérez, K. Araujo, and A. García de Lorenzo. 2016. “Prevalence of Hospital Malnutrition in Cancer Patients: A Sub-Analysis of the PREDyCES® Study.” Supportive Care in Cancer 24: 429–35. https://doi.org/10.1007/s00520-015-2813-7.

Ramani, K. V., H. Ramani, S. S. Alikar, B. S. Ajaikumar, and R. G. Trivedi. 2017. Breast Cancer: Medical Treatment, Side Effects, and Complementary Therapies. Momentum Press.

Revenson, T. A., K. Griva, A. Luszczynska, V. Morrison, E. V. Panagopoulou, N. Vilchinsky, and M. Hagedoorn. 2016. Caregiving in the Illness Context. Palgrave MacMillan. https://doi.org/10.1057/9781137558985.

Rha, S.Y., Y. Park, S. K. Song, C. E. Lee, and J. Lee. 2015a. “Caregiver Burden and Health-Promoting Behaviors Among the Family Caregivers of Cancer Patients.” European Journal of Oncology Nursing 19 (2): 174–81. https://doi.org/10.1016/j.ejon.2014.09.003.

Rha, S. Y., Y. Park, S. K. Song, C. E. Lee, and J. Lee. 2015b. “Caregiving Burden and the Quality of Life of Family Caregivers of Cancer Patients: The Relationship and Correlates.” European Journal of Oncology Nursing 19 (4): 376–82. https://doi.org/10.1016/j.ejon.2015.01.004.

Schulz, R., S. R. Beach, S. J. Czaja, L. M. Martire, and J. K. Monin. 2020. “Family Caregiving for Older Adults.” Annual Review of Psychology 71: 635–59. https://doi.org/10.1146/annurev-psych-010419-050754.

Shokane, A. L., and M. A. Masoga. 2021. “Framing the Proposal Study.” In Research at Grass Roots: For the Social Science and Human Service Professions. 5th ed. Edited by C. B. Fouché, H. Strydom and W. J. H. Roestenburg. Van Schaik.

Singh, E., J. M. Underwood, C. Nattey, C. Babb, M. Sengayi, and P. Kellett. 2015. “South African Cancer Registry: Effect of Withheld Data from Private Health Systems on Cancer Incidence Estimates.” South African Medical Journal 105 (2): 107–9. https://doi.org/10.7196/SAMJ.8858.

Shahid, S., A. Durey, D. Bessarab, S. M. Aoun, and S. C. Thompson. 2013. “Identifying Barriers and Improving Communication Between Cancer Service Providers and Aboriginal Patients and Their Families: The Perspectives of Service Providers.” BMC Health Service Research 13: 460–62. https://doi.org/10.1186/1472-6963-13-460.

Sherwood, D. W., D. B. McGuire, and J. Y. Cheon. 2014. “A Pilot Study of the Experience of Family Caregivers of Patients with Advanced Pancreatic Cancer Using a Mixed Methods Approach.” Journal of Pain and Symptom Management 48 (3): 385–99. https://doi.org/10.1016/j.jpainsymman.2013.09.006

Sklenarova, H., A. Krümpelmann, M. W. Haun, H. C. Friederich, J. Huber, M. Thomas, E. C. Winkler, W. Herzog, and M. Hartmann. 2015. “When Do We Need to Care About the Caregiver? Supportive Care Needs, Anxiety, and Depression Among Informal Caregivers of Patients with Cancer and Cancer Survivors.” Cancer 121 (9): 1513–9. https://doi.org/10.1002/cncr.29223.

Vehling, S., and A. Mehnert. 2013. “Symptom Burden, Loss of Dignity, and Demoralization in Patients with Cancer: A Mediation Model.” Psycho-Oncology 23 (3): 283–90. https://doi.org/10.1002/pon.3417.

Vehovar, V., V. Toepoel, and S. Steinmetz. 2016. “Non-Probability Sampling.” In The SAGE Handbook of Survey Methodology, edited by C. Wolf, D. Joye, T. Smith and Y. Fu. Sage. https://doi.org/10.4135/9781473957893.n22.

WHO. 2020. “WHO Report on Cancer: Setting Priorities, Investing Wisely and Providing Care for All.” Accessed 3 February 2021. https://www.who.int/publications/i/item/9789240001299.

WHO. 2022. “Cancer: Key Facts.” Accessed 30 October 2022. https://www.who.int/news-room/fact-sheets/details/cancer.

Downloads

Published

2026-06-11

How to Cite

Ndamba, Felistus, Modjadji Linda Shirindi, and Mankwane Daisy Makofane. 2026. “Family Caregivers’ Accounts of Their Understanding of Cancer and Its Effects on Patients”. Southern African Journal of Social Work and Social Development 38 (1):18 pages. https://doi.org/10.25159/2708-9355/20773.

Issue

Section

Articles
Received 2025-10-24
Accepted 2026-02-25
Published 2026-06-11