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Parental experiences of childhood cancer treatment in Kenya

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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.

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Abbreviations

MTRH:

Moi Teaching and Referral Hospital

CAM:

Complementary alternative treatment

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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.

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Correspondence to F. Njuguna.

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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

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  • DOI: https://doi.org/10.1007/s00520-014-2475-x

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