Perspectives and experiences of parents/guardians of childhood cancer patients at the University Teaching Hospital(UTH) in Lusaka

Abstract

Background: Zambia is experiencing high prevalence of childhood cancer. Cancer is a traumatising disease and affects physical and psychological wellbeing of patients and changes the outlook of life. Therefore, psychosocial support is crucial in helping to uplift the feelings of patients and parents from diagnosis to treatment of childhood cancer. However, Zambia has few organisations that offer psychosocial support services to children with cancer and their families. The study focused on perspectives and experiences of parents/guardians of children with cancer in terms of psychosocial support services offered at the Paediatric Oncology ward at UTH. Methods: This was an exploratory health facility-based Qualitative study that was conducted at UTH‟S Paediatric Oncology Ward. Fifteen (15) in-depth individual interviews with parents/guardians were conducted and seven (7) key informant interviews were also conducted. Data was analysed using thematic analysis. Results: Parents/guardians exhibited low levels of knowledge on childhood cancer due to low levels of awareness campaigns on childhood cancers. They had financial challenges in meeting the cost of treatment, the cost of transport, cost of living for children back home, providing the needs of the childhood cancer patient and parents‟ own well-being. They also had difficulty in managing the long period of hospitalisation in relation to their spouses, giving attention to children back home, managing their businesses and maintaining cleanliness in their households during the short breaks from hospitalisation. Parents/guardians could not have sustainable income because they had to stop or put on hold their income generating activities such as farming and retail businesses which led to their income being negatively affected and unable to meet the cost of treatment, transport, providing the needs of the childhood cancer patient as well as their family. Their main psychosocial need was counselling that includes provision of information on childhood cancer in terms of disease management, treatment and side effects of chemotherapy. Therefore, it‟s important to note that the study found that counselling, shelter and information on childhood cancer management was provided to parents/guardians and some parents/guardians reported that they were happy with; regular checks and provision of medicines, assistance from social welfare that enabled them access services like CT scan and MRI, spiritual and food support from well-wishers, the church and cancer foundations. However, some parents/guardians feel that the psychosocial support services offered at the Paediatric oncology ward were not easily x accessible; mainly because some parents/guardians did not receive some of the psychosocial support services. Even those parents/guardians who received the services still felt that the services were not easily accessible. Parents/guardians turn to God in prayer as a way of coping with the condition of the child which is affected by different factors. They pray as individuals, with peers in the ward and through spiritual support from churches, cancer organisations and medical officials from the oncology ward. Conclusion There is need to increase awareness on childhood cancers in Zambia. Increasing human resource to provide specialised childhood cancer treatment and counselling will improve the provision of psychosocial services at the Paediatric oncology ward at UTH. Making cancer treatment available in district/provincial hospitals will help in reducing the financial challenges and challenges caused by long period of hospitalisation, as well as enabling parents/guardians to cope with the burden of nursing a childhood cancer patient.