Kayula Childhood Cancer Foundation

[Gaetan Boren]

Thismonth, 15 new members joined the St. Jude Global Alliance, a worldwide network of institutions working to improve survival rates for pediatric cancer and catastrophic diseases. In a historic first for the Alliance, these new partners are fundraising organizations rather than medical institutions, each dedicated to raising funds for hospitals in their home countries.

Each year, an estimated 400,000 children worldwide develop cancer. Globally, approximately 90% of children with cancer live in low- and middle-income countries, and far too many of these children lack access to adequate diagnosis and treatment. Compounding the problem is limited public funding for pediatric research and care, and imbalances in the technology available to raise needed funds. Most of these children will unnecessarily die from their diseases.

Adding these foundations, and others like them, to the Alliance furthers the global collaboration among hospitals and fundraising organizations to advance the St. Jude mission: Finding cures. Saving children. Everywhere. These new partners will gain access to international networking and educational opportunities while strengthening their connections with like-minded organizations across the globe. By drawing on expertise developed over decades by St. Jude and ALSAC, these foundations will be able to accelerate their work raising critical funds and changing the trajectory of survival rates in their country.

The St. Jude Global Alliance was formed in 2018 to bring together individuals and institutions dedicated to the shared vision of improving access to quality healthcare and increasing survival rates of children with cancer and other catastrophic diseases with a specific focus on low and middle-income countries.

See the international impact of the work of St. Jude Global for children with catastrophic diseases as it brings people together to help make access to quality care possible for every child, everywhere.

Jean-Robert Brutus MD, MPH, center, is president of Fondation Haitenne Anti-Cancer Infantile, the only foundation of its kind in Haiti, which was created to help families better care for their children with cancer.

Hedley Lewis is chief executive officer of CHOC Childhood Cancer Foundation, which has been dedicated to the well-being of children and teenagers diagnosed with cancer or life-threatening blood disorders and their families since 1979.

Olya Kudinenko is founder and chairwoman of the board for Tabletochki Charity Foundation, the largest Ukrainian non-profit helping children with cancer at every stage of treatment. Here, she signs the agreement with the St. Jude Global Alliance as Rick Shadyac, CEO of ALSAC, the fundraising and awareness organization for St. Jude, looks on.

The mission of Fundacin Perez Scremini is to guarantee personalized hemato-oncology treatment for every Uruguayan child or adolescent who needs it. Children like Isabella who is held by nurse Patricia.

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.

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.

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.

Cancer is the leading cause of death in developed countries and the second leading cause of death in developing countries [1,2,3]. About 12.7 million new cases of cancer occur each year worldwide and 56 % of the cases occur in low and middle-income countries (LMICs) [1,2,3]. A significant number of these cancer cases involve children [3]. Globally, about 160,000 new cases of cancer are diagnosed annually in children younger than 15 years of age [1,2,3]. Sub-Saharan Africa has faced a huge challenge with regard to diagnosis and treatment of cancer in children such as difficulties in giving the right diagnosis and at the right time and reduced access to appropriate therapeutic facilities and drugs [4,5,6]. In Zambia, about 1000 cases of pediatric cancer occur per year and less than 10% of these children complete treatment [2].

Despite this increasing burden, cancer control programs and the provision of early diagnosis and treatment services are limited in most African countries [3]. Competing health demands and limited knowledge concerning the magnitude of the current and future cancer burden and its economic impact has contributed to inadequate investment in cancer control programs and the provision of services in most African countries [3, 7, 8].

There are several socio-economic and psychosocial effects of cancer on children and their families [3, 9]. To come up with sustainable support for the children with childhood cancer as well as their parents, the main needs that they face need to be considered [3, 9, 10]. Some of these needs and challenges include inadequate access to relevant information, stress, lack finances to meet the health needs and poor nutrition to support the treatment [10].

In Zambia, the University Teaching Hospital (UTH) is the only major government-funded institution offering psychosocial support and treatment services to children with cancer [2, 11]. Utilization of these services is very poor [2]. Meanwhile, there is limited documentation on the challenges faced by health care providers, parents and patients who face a child hood cancer diagnosis. Current studies on childhood cancer in Zambia have mainly focused on the effects of the HIV epidemic on the epidemiology of cancers in children [12]; and an investigation of treatment outcomes and risk factors for treatment abandonment of children diagnosed with cancer [2]. This study aimed at addressing this knowledge gap by documenting the challenges and coping strategies for health care providers, parents and patients who face a child hood cancer diagnosis in Zambia at UTH.

This was an exploratory health facility-based qualitative study. It involved parents or caregivers of children with cancer undergoing treatment at the Paediatric oncology ward at UTH in Lusaka district. The study design helped in bringing forth in-depth insights on perspectives of parents/ caregivers on psychosocial support needs at the Paediatric oncology ward at UTH. The research question was: what are the challenges for health care providers, parents and patients who face a child hood cancer diagnosis in Zambia? To adequately capture the challenges for all the categories in the research question, the interview guide explored the challenges at individual, family, community, systems and cultural levels.

Zambia is a lower middle-income country. In 2013, the country had a Gross Domestic Product (GDP) of about 17 3751. 82 million United States Dollar (USD) and a GDP per capita of 1115 (USD). The country has a population of about 14.5 million and half are aged below 15 years. About 60% of the population is below the international poverty line of USD 1.25 per day. The Zambian health system faces multiple challenges. HIV prevalence in the adult Zambian population stands at 12.7%. The average life expectancy in Zambia is 51.2 years, while the neonatal mortality rate is 35 per 1000 live births. Infant and under-five mortality are also high, at 86 and 141 per 1000 live births, respectively [13].

The sample size was 22 respondents: 7 key informants and 15 parents/caregivers. Parents/caregivers were purposively recruited from patient register at the ward over a period of month. We approached all those who were in the Paediatric oncology ward to seek informed consent. The recruitment process started with explaining the purpose and scope of study to the study participants. All the parents/caregivers that we approached agreed to participate in the study. The final sample was arrived at using maximum-variation sampling criteria, which was about choosing parents/caregivers with different characteristics based on demographic characteristics such as age, marital status and district of residence until data saturation was reached [13].

The inclusion criteria were a parent/caregiver whose child had been diagnosed and admitted in the ward, as well as workers who provided treatment to children and psychosocial support to parents/guardians. We also included officials from Non-Governmental Organizations providing psychosocial support services to the ward. We excluded all those who met the inclusion criteria but did not provide consent.

Data were collected using different methods namely in-depth interviews (Additional file 1), key informant interviews (Additional file 2) and review of documents. Interview guides were developed to guide data collection. The in-depth interview guide was administered through face-to-face in-depth individual interviews with parents/caregivers. Interviews were recorded using a digital audio recorder. Handwritten interview notes were also taken in an interview notebook. Data collection and preliminary data analysis was a cyclical process: data collected were informing ensuing interviews and data collection was concluded when no new insight emerged, a stage called data saturation.

The key informant interviews (KII) were conducted with five health professionals from UTH: a social worker, pharmacist, registered nurse (trained counsellor), an enrolled nurse, and an oncology doctor as well as two staff from Kayula Childhood Cancer Foundation (KCCF) and Zambia Childhood Cancer Foundation (ZCCF) who provide psychosocial support services at the Paediatric oncology ward at UTH. The KII provided insights into the challenges experienced in providing services. The officials had varying years of experience ranging from 1 year 6 months to 13 years.

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