Abstract
Purpose
Our study explores socioeconomic, treatment-related, and psychological experiences of parents during cancer treatment of their children at an academic hospital in Kenya.
Methods
This cross-sectional study used semi-structured questionnaires. Parents whose children came for cancer treatment consecutively between November 2012 and April 2013 were interviewed.
Results
Between 2012 and 2013, 115 oncology patients attended the hospital and 75 families (response rate 65 %) were interviewed. Cancer treatment resulted in financial difficulties (89 %). More information about cancer and treatment was required (88 %). More contact with doctors was needed (83 %). At diagnosis, cancer was perceived as curable (63 %). However, parents were told by health-care providers that most children with cancer die (49 %). Parents had difficulties with understanding doctors’ vocabulary (48 %). Common reasons to miss hospital appointments were travel costs (52 %) and hospital costs (28 %). Parents (95 %) used complementary alternative treatment (CAM) for their children. Health-care providers told parents not to use CAM (49 %). Parents had not discussed their CAM use with doctors (71 %). Community members isolated families because their child had cancer (25 %), believed that child was bewitched (57 %), advised to use CAM (61 %), and stopped conventional treatment (45 %). Some families (15 %) never disclosed the child’s illness to community members. Parents shared experiences with other parents at the ward (97 %) and would otherwise not understand the disease and its treatment (87 %).
Conclusions
Parents suffer financial hardships and are dissatisfied with doctors’ communication regarding their children’s condition. CAM is very commonly used. Doctors need to improve their communication skills and discuss CAM more openly. Cancer programs should include more support for parents: financial assistance, a facility where parents and children can stay during the course of therapy, and parent support groups.
Similar content being viewed by others
Abbreviations
- MTRH:
-
Moi Teaching and Referral Hospital
- CAM:
-
Complementary alternative treatment
References
Sullivan R, Kowalczyk JR, Agarwal B et al (2013) New policies to address the global burden of childhood cancer. Lancet Oncol 3:125–135
Mehta PS, Wiernikowski JT, Perrilli JA et al (2013) Essential medicines for paediatric oncology in developing world. Pediatr Blood Cancer 60:889–891
Magrath I, Steliarora-Foucher E, Epelman S et al (2013) Paediatric cancer in low- and middle-income countries. Lancet Oncol 14:104–116
Masera G (2009) Bridging the childhood cancer mortality gap between economically developed and low income countries. J Paediatr Hematol Oncol 31:710–712
Rodriguez-Galido C, Friedrich P, Morrisey L et al (2013) Global challenges in paediatric oncology. Curr Opin Paediatr 25:3–15
Hadley LG, Rouma BS, Saad EY (2012) Challenges of pediatric oncology in Africa. Semin Paediar Surg 21:136–141
Harif M, Traore F, Hesseissen L, Moreira C et al (2013) Challenges for paediatric oncology in Africa. Lancet Oncol 14:279–281
Aburn G, Gott M (2001) Education given to parents of children newly diagnosed with acute lymphoblastic leukaemia. J Pediatr Oncol Nurs 28:300–305
Khoury MN, Huijer HA, Doumil MA (2013) Lebanese parents experiences with a child with cancer. Eur J Oncol Nurs 17:16–21
Dockerty JD, Skegg DC, William SM et al (2003) Economic effects of childhood cancer on families. J Pediatr Child Health 39:254–258
Mostert S, Sitaresmi MN, Gundy CM et al (2008) Parental experiences of childhood leukaemia treatment in Indonesia. J Pediatr Hematol Oncol 30:738–743
Stam H, Grootenhuis MA, Brons PP (2006) Health related quality of life in children and emotional reactions of parents following completion of cancer treatment. Pediatr Blood Cancer 47:312–319
Kenya National Bureau of Statistics (2014) 2009 population and housing census results. www.knbs.or.ke. Accessed 11 Oct 2013
Mostert S, Njuguna F, Kemps L (2012) Epidemiology of diagnosed childhood cancer in Western Kenya. Arch Dis Child 97:508–512
Kenya National Bureau of Statistics (2010) Kenya demographic and health survey 2008–9. www.knbs.or.ke. Accessed 11 Oct 2013
Kolossa K (2014) The Kenyan transport system. www.uni-koeln.de/phil-fak. Accessed 11 Oct 2013
Ministry of Transport and Communications (2009) Integrated national transport policy; moving a working nation. Government of Kenya 2004. www.marsgroupkenya.org. Accessed 11 Oct 2013
Advameg, Inc. (2014) Culture of Kenya. www.everyculture.com. Accessed 11 Oct 2013
The Africa Guide (2013) People and culture of Kenya. www.africaguide.com/country/kenya/culture.htm. Accessed 11 Oct 2013
Mostert S, Njuguna F, van de Ven PM et al (2013) Influence of health-insurance access and hospital retention policies on childhood cancer treatment in Kenya. Paediatr Blood Cancer 61:913–918
Al Quidimat MR, Rozmus CL, Farhan N (2011) Family strategies for managing childhood cancer: using complementary and alternative medicine in Jordan. J Adv Nurs 67:591–597
Gozun S, Arikan D, Buyukavci M (2007) Complementary and alternative medicine use in pediatric oncology in eastern Turkey. Cancer Nurs 30:38–44
Laengler A, Spix C, Seiffert G et al (2008) Complementary and alternative treatment methods in children with cancer: a population based retrospective survey on the prevalence of use in Germany. Eur J Cancer 44:2233–2240
Singendonk M, Kaspers GJ, Naafs-Wilstra M et al (2013) High prevalence of complementary and alternative medicine use in the Dutch pediatric oncology population: a multicenter survey. Eur J Pediatr 172:31–37
Bussman RW (2006) Ethnobotany of the Samburu of Mt. Nyiru, South Turkana, Kenya. J Ethnobiol Ethnomed 6:35
Gona JK, Hartley S, Newton CR (2006) Using participatory rural appraisal (PRA) in the identification of children with disabilities in rural Kilifi Kenya. Rural Remote Health 6:553
Mostert S, Njuguna F, Langat S et al (2014) Two overlooked contributors to abandonment of childhood cancer treatment in Kenya: parents’ social network and experiences with hospital retention policies. Psychooncology 23:700–707
Acknowledgments
We wish to acknowledge the Doctor 2 Doctor program for their logistical support. The funding for this study was through a grant from the International Society of Pediatric Oncology (SIOP).
Conflict of interest
The authors have no relationship with the organization that funded the study. All the authors have no conflicts to declare.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Njuguna, F., Mostert, S., Seijffert, A. et al. Parental experiences of childhood cancer treatment in Kenya. Support Care Cancer 23, 1251–1259 (2015). https://doi.org/10.1007/s00520-014-2475-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-014-2475-x