Parents particularly those who are low-income or single, are significantly impacted by the financial burden of cancer-related expenditures. The financial challenges associated with having a child with cancer may place a significant burden on parents (Santacroce et al., 2018). This research focused on the financial conditions of parents in Malaysia who had cancer. The use of Design and Developmental Research (DDR), as described by Richey and Klein in 2007, was implemented. This approach comprises the requirements assessment, development and execution, and usability evaluation stages. Purposive sampling is a method used to choose respondents based on certain features or attributes relevant to the inquiry. The participants consisted of parents whose children were afflicted with cancer. This research included a limited sample size of just nine parents. Each participant had a semi-structured interview, and the research was analyzed using Litchman's (2006) 3Cs analytical framework, which consists of Codes, Categories, and Concepts.The results of this study indicate that the elements depicting the financial situation of parents of cancer patients include fulfill the child's needs while in the hospital, monthly income being affected due to managing and caring for a sick child, making financial plans after quitting a job or taking unpaid leave, savings are impacted, family members helping financially, financial aid and support from external parties, and selling assets to cover insufficient finances.
Aminuddin, F., Bahari, M. S., Zainuddin, N. A., Hanafiah, A. N., & Hassan, N. Z. A. (2023). The Direct and Indirect Costs of Cancer among the Lower-Income Group: Estimates from a Pilot and Feasibility Study. Asian Pacific journal of cancer prevention : APJCP, 24(2), 489–496. https://doi.org/10.31557/APJCP.2023.24.2.489
Azzani, M., Roslani, A. C., & Su, T. T. (2015). The perceived cancer-related financial hardship among patients and their families: a systematic review. Supportive Care in Cancer, 23, 889-898.
Bradley, C. J. (2019, August). Economic burden associated with cancer caregiving. In Seminars in oncology nursing (Vol. 35, No. 4, pp. 333-336). WB Saunders.
Cardinali, P., Migliorini, L., & Rania, N. (2019). The caregiving experiences of fathers and mothers of children with rare diseases in Italy: Challenges and social support perceptions. Frontiers in psychology, 10, 1780.
Chae, W., Kim, J., Park, S., Park, E. C., & Jang, S. I. (2020). The Financial Burden Associated with Medical Costs among Childhood Cancer Patients and Their Families Related to Their Socioeconomic Status: The Perspective of National Health Insurance Service. International journal of environmental research and public health, 17(17), 6020. https://doi.org/10.3390/ijerph17176020
Chan, S. L., Matsah, N. S. B., Yusuf, A. A. B., Khaidir, A. S. B. M., Hamdan, N. H. B., & Kamizi, Z. N. B. (2022). A review on family caregiving challenges in Malaysia. ProGCouns: Journal of Professionals in Guidance and Counseling, 3(1), 1-9.
Chu, H. C., & Hwang, G. J. (2008). A Delphi-based approach to developing expert systems with the cooperation of multiple experts. Expert systems with applications, 34(4), 2826-2840.
Chuah, F. L. H., Tan, S. T., Yeo, J., & Legido-Quigley, H. (2019). Health system responses to the health needs of refugees and asylum-seekers in Malaysia: a qualitative study. International journal of environmental research and public health, 16(9), 1584.
Coumoundouros, C., von Essen, L., Sanderman, R., & Woodford, J. (2020). Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases: a protocol for a mixed-methods systematic review with a qualitative comparative analysis. BMJ Open, 10(6), Article 035406. https://doi.org/10.1136/bmjopen-2019-035406
Darlington, A. S. E., Morgan, J. E., Wagland, R., Sodergren, S. C., Culliford, D., Gamble, A., & Phillips, B. (2021). COVID?19 and children with cancer: Parents’ experiences, anxieties and support needs. Pediatric blood & cancer, 68(2), e28790.
Fnu, N., Kuan, W. C., Kong, Y. C., Bustamam, R. S., Wong, L. P., Subramaniam, S., Ho, G. F., Zaharah, H., Yip, C. H., & Bhoo-Pathy, N. (2022). Cancer-related costs, the resulting financial impact and coping strategies among cancer survivors living in a setting with a pluralistic health system: a qualitative study. Ecancermedicalscience, 16,1449.https://doi.org/10.3332/ecancer.2022.1449
Friedline, T., Chen, Z., & Morrow, S. P. (2021). Families’ financial stress & well-being: The importance of the economy and economic environments. Journal of Family and Economic Issues, 42, 34-51.
Gardiner, C., Robinson, J., Connolly, M., Hulme, C., Kang, K., Rowland, C., & Gott, M. (2020). Equity and the financial costs of informal caregiving in palliative care: a critical debate. BMC palliative care, 19, 1-7.
Gibson, T. M., Mostoufi-Moab, S., Stratton, K. L., Leisenring, W. M., Barnea, D., Chow, E. J., Donaldson, S. S., Howell, R. M., Hudson, M. M., Mahajan, A., Nathan, P. C., Ness, K. K., Sklar, C. A., Tonorezos, E. S., Weldon, C. B., Wells, E. M., Yasui, Y., Armstrong, G. T., Robison, L. L., & Oeffinger, K. C. (2018). Temporal patterns in the risk of chronic health conditions in survivors of childhood cancer diagnosed 1970-99: a report from the Childhood Cancer Survivor Study cohort. The Lancet. Oncology, 19(12), 1590–1601. https://doi.org/10.1016/S1470-2045(18)30537-0
Granek, L., Rosenberg?Yunger, Z. R. S., Dix, D., Klaassen, R. J., Sung, L., Cairney, J., & Klassen, A. F. (2014). Caregiving, single parents and cumulative stresses when caring for a child with cancer. Child: care, health and development, 40(2), 184-194.
Iragorri, N., de Oliveira, C., Fitzgerald, N., & Essue, B. (2021). The out-of-pocket cost burden of cancer care—a systematic literature review. Current Oncology, 28(2), 1216-1248.
Jones, J. M., Fitch, M., Bongard, J., Maganti, M., Gupta, A., D’Agostino, N., & Korenblum, C. (2020). The needs and experiences of post-treatment adolescent and young adult cancer survivors. Journal of clinical medicine, 9(5), 1444.
Kang, E., Keam, B., Lee, N. R., Kang, J. H., Kim, Y. J., Shim, H. J., ... & Yun, Y. H. (2021). Impact of family caregivers’ awareness of the prognosis on their quality of life/depression and those of patients with advanced cancer: A prospective cohort study. Supportive Care in Cancer, 29, 397-407.
Lansky, S. B., Black, J. L., & Cairns, N. U. (1983). Childhood cancer medical costs. Cancer, 52(4), 762-766.
Lichtman, M. (2006). Qualitative research in education: A user’s guide. Thousand Oaks, CA: SAGE.
Liu, Z., Heffernan, C., & Tan, J. (2020). Caregiver burden: A concept analysis. International journal of nursing sciences, 7(4), 438–445. https://doi.org/10.1016/j.ijnss.2020.07.012
Mitterer, S., Zimmermann, K., Bergsträsser, E., Simon, M., Gerber, A. K., & Fink, G. (2021). Measuring financial burden in families of children living with life-limiting conditions: a scoping review of cost indicators and outcome measures. Value in Health, 24(9), 1377-1389.
National Cancer Institute MoHM (2019). Malaysia National Cancer Registry Report (MNCR) 2012-2016. Ministry of Health Malaysia.
Neugebauer, C., & Mastergeorge, A. M. (2021). The family stress model in the context of pediatric cancer: A systematic review. Journal of Child and Family Studies, 30, 1099-1122.
Nightingale, C. L., Canzona, M. R., Danhauer, S. C., Reeve, B. B., Howard, D. S., Tucker-Seeley, R. D., S. Golden, S. L., Little-Greene, D., Roth, M. E., Victorson, D. E., & Salsman, J. M. (2022). Financial burden for caregivers of adolescents and young adults with cancer. Psycho-Oncology, 31(8), 1354-1364. https://doi.org/10.1002/pon.5937
Nipp, R. D., Kirchhoff, A. C., Fair, D., Rabin, J., Hyland, K. A., Kuhlthau, K., ... & Park, E. R. (2017). Financial burden in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Journal of clinical oncology, 35(30), 3474- 3481.
Northouse, L., Williams, A. L., Given, B., & McCorkle, R. (2012). Psychosocial care for family caregivers of patients with cancer. Journal of clinical oncology, 30(11), 1227-1234.
Okumu, R. A., Muiva, M., Wagoro, M., Abdallah, F., & Oweya, E. (2017). Association between Socioeconomic and Psychological Experiences of Parents with Children on Leukemia Treatment in Kenyatta National Hospital, Kenya. Asia-Pacific journal of oncology nursing, 4(1), 38–44. https://doi.org/10.4103/2347- 5625.199079
Richey, R.C., & Klein, J.D. (2007). Design and Development Research: Methods, Strategies, and Issues (1st ed.). Routledge. https://doi.org/10.4324/9780203826034
Ritter, J., Allen, S., Cohen, P. D., Fajardo, A. F., Marx, K., Loggetto, P., & Bhakta, N. (2023). Financial hardship in families of children or adolescents with cancer: a systematic literature review. The Lancet Oncology, 24(9), e364-e375.
Roser, K., Erdmann, F., Michel, G., Winther, J. F., & Mader, L. (2019). The impact of childhood cancer on parents' socio?economic situation—a systematic review. Psycho?Oncology, 28(6), 1207-1226.
Sadigh, G., Switchenko, J., Weaver, K. E., Elchoufi, D., Meisel, J., Bilen, M. A., ... & Carlos, R. (2022). Correlates of financial toxicity in adult cancer patients and their informal caregivers. Supportive Care in Cancer, 30, 217-225.
Salsman, J. M., Bingen, K., Barr, R. D., & Freyer, D. R. (2019). Understanding, measuring, and addressing the financial impact of cancer on adolescents and young adults. Pediatric blood & cancer, 66(7), e27660.
Santacroce, S. J., & Kneipp, S. M. (2020). Influence of pediatric cancer-related financial burden on parent distress and other stress-related symptoms. Pediatric blood & cancer, 67(3), e28093. https://doi.org/10.1002/pbc.28093
Santacroce, S. J., Tan, K. R., & Killela, M. K. (2018). A systematic scoping review of the recent literature (?2011-2017) about the costs of illness to parents of children diagnosed with cancer. European journal of oncology nursing: the official Journal of European Oncology Nursing Society, 35, 22–32. https://doi.org/10.1016/j.ejon.2018.04.004
Slusarska, B., Bartoszek, A., Kocka, K., Deluga, A., Chrzan-Rodak, A., & Nowicki, G. (2019). Quality of life predictors in informal caregivers of seniors with a functional performance deficit–an example of home care in Poland. Clinical Interventions in Aging, 889-903.
Tan, C. E., Lau, S. C. D., Latiff, Z. A., Lee, C. C., Teh, K. H., & Sidik, S. M. (2022). Information needs of Malaysian parents of children with cancer: a qualitative study. Asia-Pacific Journal of Oncology Nursing, 9(3), 143-152.
Warner, E. L., Kirchhoff, A. C., Nam, G. E., & Fluchel, M. (2015). Financial burden of pediatric cancer for patients and their families. Journal of oncology practice, 11(1), 12-18.
Yabroff, K. R., Bradley, C., & Shih, Y. C. T. (2020). Understanding financial hardship among cancer survivors in the United States: strategies for prevention and mitigation. Journal of Clinical Oncology, 38(4), 292.
Zaidi, A. A., Ansari, T. Z., & Khan, A. (2012). The financial burden of cancer: estimates from patients undergoing cancer care in a tertiary care hospital. International journal for equity in health, 11, 1-6.
Sansuddin, N. S. M., & Rani, N. H. M. (2024). The Financial Burden Model Experienced by Parents of Paediatric Cancer Patients in Malaysia. International Journal of Academic Research in Business and Social Sciences, 14(7), 2334–2347.
Copyright: © 2024 The Author(s)
Published by Knowledge Words Publications (www.kwpublications.com)
This article is published under the Creative Commons Attribution (CC BY 4.0) license. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this license may be seen at: http://creativecommons.org/licences/by/4.0/legalcode