Challenges for health care providers, parents and patients who face a child hood cancer diagnosis in Zambia

Mulima Walubita, Bornwell Sikateyo, Joseph M Zulu, Mulima Walubita, Bornwell Sikateyo, Joseph M Zulu

Abstract

Background: Zambia is experiencing high prevalence of childhood cancer. However, very few children access and complete treatment for cancer. This study aimed to document the challenges for health care providers, parents and patients who face a child hood cancer diagnosis in Zambia, and their coping strategies.

Methods: This was an exploratory health facility-based qualitative study that was conducted at a Paediatric oncology ward at referral hospital in Zambia. In-depth individual interviews conducted with fifteen (15) caregivers and seven (7) key informants were analysed using thematic analysis.

Results: Several challenges related to managing the childhood cancer diagnosis were recorded. Individual and family challenges were inadequate knowledge on childhood cancer, lack of finances to meet treatment and transport costs as well as long period of hospitalisation that affected women's ability to perform multiple responsibilities. Whereas challenges at community level were inadequate support to address emotional and physical distress and social stigmatisation experienced by caregivers. Health systems issues included inadequate specialised health workers, poor communication among health workers, limited space and beds as well as insufficient supplies such as blood. Cultural related factors were the belief that cancer is a product of witchcraft as well as religious beliefs regarding the role of faith healing in childhood cancer treatment. Coping strategies used by parents/ caregivers included praying to God, material support from organisations and church as well as delaying having another child.

Conclusion: Addressing the challenges for health care providers, parents and patients who face a childhood cancer diagnosis may require adopting a systems or an ecological approach that allows developing strategies that simultaneously address challenges related to the individual, family, community, health system and cultural aspects.

Keywords: Challenges; Childhood cancer diagnosis; Zambia.

Conflict of interest statement

Ethics approval and consent to participate

Ethical clearance to conduct this study was sought from the Excellency in Research Ethics and Science (ERES) committee. The ERES committee approved the study and the study was given a clearance number 2014-May-031 as confirmation and proof that it had been approved. The ERES committee is located at house number 33 Joseph Mwilwa Road, Rhodes Park, Lusaka, Zambia. Permission was also obtained from Ministry of health and UTH authorities. Both oral and written consent to participate in the study was obtained from study participants. Permission was sought from the participants to use a tape recorder.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

References

    1. Ferlay J, Shin HR, Bray F, Forman D, Mathers C, et al. Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008. Int J Cancer. 2010;127:2893–2917. doi: 10.1002/ijc.25516.
    1. Slone JS, Chunda-Liyoka C, Perez M, Mutalima N, Newton R, Chintu C, Friedman DL. Pediatric malignancies, treatment outcomes and abandonment of pediatric cancer treatment in Zambia. PLoS One. 2014;9(2):e89102. doi: 10.1371/journal.pone.0089102.
    1. Ribeiro RC, Steliarova-Foucher E, Magrath I, Lemerle J, Eden T, et al. Baseline status of paediatric oncology care in ten low-income or mid-income countries receiving My Child Matters support: a descriptive study. Lancet Oncol. 2008;9:721–729. doi: 10.1016/S1470-2045(08)70194-3.
    1. Kellie SJ, Howard SC. Global child health priorities: what role for paediatric oncologists? Eur J Cancer. 2008;44:2388–2396. doi: 10.1016/j.ejca.2008.07.022.
    1. Valsecchi MG, Steliarova-Foucher E. Cancer registration in developing countries: luxury or necessity? Lancet Oncol. 2008;9:159–167. doi: 10.1016/S1470-2045(08)70028-7.
    1. Ndom P. Challenges of anticancer chemotherapy in Africa. Canadian Journal of Urology. 2008;15:3909–3911.
    1. Mostert S, Arora RS, Arreola M, Bagai P, Friedrich P, et al. Abandonment of treatment for childhood cancer: position statement of a SIOP PODC Working Group. Lancet Oncol. 2011;12:719–720. doi: 10.1016/S1470-2045(11)70128-0.
    1. Spinetta JJ, Masera G, Eden T, Oppenheim D, Martins AG, et al. Refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer: a report of the SIOP Working Committee on Phychosocial Issues in Pediatric Oncology. Med Pediatr Oncol. 2002;38:114–117. doi: 10.1002/mpo.1283.
    1. Patterson P, Millar B, Visser A. The development of an instrument to assess the unmet needs of young people who have a sibling with cancer: Piloting the Sibling Cancer Needs Instrument (SCNI) J Pediatr Oncol Nurs. 2011;28(1):16–26. doi: 10.1177/1043454210377174.
    1. Norma D’AM, Annette P, Brad Z. Providing Developmentally Appropriate Psychosocial Care to Adolescent and Young Adult Cancer Survivors. Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, 610 University Avenue. Toronto: American Cancer Society; 2011.
    1. Mukiibi JM, Banda L, Liomba NG, Sungani FC, Parkin DM. Spectrum of childhood cancers in Malawi 1985–1993. East Afr Med J. 1995;72:25–29.
    1. Chintu C, Athale UM, Patil PS. Childhood cancers in Zambia before and after the HIV epidemic. Arch Dis Child. 1995;73:100–101. doi: 10.1136/adc.73.2.100.
    1. Zulu J M (2015) Integration of national community-based health worker programmes in health systems: Lessons learned from Zambia and other low and middle income countries. Accessed from . Accessed 30 Apr 2018.
    1. Ayres L, Kavanaugh K, Knafl KA. Within-case and across-case approaches to qualitative data analysis. Qual Health Res. 2003;13(6):871–883. doi: 10.1177/1049732303013006008.
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–112. doi: 10.1016/j.nedt.2003.10.001.
    1. Cridland Olga, (2010). Awareness for early detection of childhood cancer – the Romanian model. Association P.A.V.E.L. Sos. Mihai Bravu 311–313, Bl. SB1, Sc. 1, Ap. 1, sector 3, cod 030309, Bucharest, Romania. . . Accessed 30 Apr 2018.
    1. Svanemyr J, Amin A, Robles OJ, Greene ME. Creating an enabling environment for adolescent sexual and reproductive health: a framework and promising approaches. J Adolesc Health. 2015;56(1):S7–S14. doi: 10.1016/j.jadohealth.2014.09.011.
    1. Hashemi F, Razavil SH, Sharif F, Shahriari MM. Coping strategies used by parents of children with cancer in Shiraz, Southern Iran. Fatemeh College of Nursing and Midwifery, Peadiatric Oncology Department, Medical School, Shiraz. University of Medical Sciences, Shiraz: Iranian Red Crescent Society; 2007.
    1. Clarke, S, Mitchell, W. and Sloper, P. (2005). Psychosocial support services for children and young people with cancer and their families Research Works. 2005–01, Social Policy Research Unit, University of York: York, United Kingdom. SPRU publications. . Accessed 30 Apr 2018.
    1. Kazak AE. Evidence-Based Interventions for Survivors of Childhood Cancer and Their Families. Journal of Paediatric Psychology. 2005;30(1):29–39. doi: 10.1093/jpepsy/jsi013.
    1. Alderfer MA. Family Psychosocial Risk, Distress, and Service Utilization in Paediatric Cancer: Predictive Validity of the Psychosocial Assessment Tool, In, Cancer,15 September 2009. Am Cancer Soc. 2009;115(18):4339–49.
    1. Bauman J. Paediatrics, vol. 100 no. 244. 1997. A Review of Psychosocial Interventions for Children With Chronic Health Conditions.
    1. Zulu JM, Michelo C, Msoni C, Hurtig AK, Byskov J, Blystad A. Increased fairness in priority setting processes within the health sector: the case of Kapiri-Mposhi District, Zambia. BMC Health Serv Res. 2014;14(1):75. doi: 10.1186/1472-6963-14-75.
    1. Grootenhuis A, Last FB. Adjustment and coping by parents of children with cancer: a review of the literature. Academic Medical Center, University of Amsterdam, Meibergdreef 9, NL-1105 AZ Amsterdam, Netherlands. 1995.
    1. Patenaude FA, Kupst MJ. Psychosocial Functioning in Paediatric Cancer, In. Journal of Paediatric Psychology. 2005;30(1):9–27. doi: 10.1093/jpepsy/jsi012.
    1. Van Dongen-Melman J. Developing Psychosocial Aftercare for Children Surviving Cancer and their Families, In. Acta Oncol. 2000;39(1):23–31. doi: 10.1080/028418600430932.

Source: PubMed

스폰서 및 공동 작업자

건강 상태

약물 개입

3
구독하다