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

5 February, 2019

Dear CHIFA and HIFA-Zambia colleagues,

This paper reveals low levels of knowledge about childhood cancer alongside beliefs that it is due to witchcraft and can be healed by faith healing - contributing to late presentation and high morbidity and mortality.

Citation, abstract and selected extracts below. Full text here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932785/

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

BMC health services research. 18 (1) (pp 314), 2018. Date of Publication: 02 May 2018.

Author: Walubita M.; Sikateyo B.; Zulu J.M.

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.

METHOD(S): 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.

RESULT(S): 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(S): 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.

SELECTED EXTRACTS

Inadequate knowledge on childhood cancer was one of the individual level challenges. Most of the parents/ caregivers exhibited lack of knowledge on the symptoms of childhood cancers before diagnosis of the cancer. This lack of knowledge contributed to caregivers presenting the children late at clinics/hospitals. Most of the parents/guardians reported that they only heard about childhood cancer after diagnosis at the Paediatric oncology ward at UTH.

“I never heard about cancer in children before they told me that my son had cancer” (30–35 years).

At the individual level, strategies for enhancing access to diagnosis, prevention and treatment of cancer services may focus on empowering people with knowledge on childhood cancer, providing psychosocial support, and developing safe spaces.

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Best wishes, Neil

Let's build a future where people are no longer dying for lack of healthcare information - Join HIFA: www.hifa.org

HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare Information For All - www.hifa.org ), a global community with more than 19,000 members in 177 countries, interacting on six global forums in four languages. Twitter: @hifa_org FB: facebook.com/HIFAdotORG neil@hifa.org