Multi-factorial challenges of family caregivers of paediatric oncology patients regarding delaying access to healthcare

Abstract

Childhood cancer is the leading cause of disease-related death. It remains a global health problem. Early diagnosis of cancer is essential for effective management of the illness. With the increase of late detection of childhood cancer, one would ask the question: “What delays family caregivers to access healthcare for their child?” South Africa has a strong legislative policy foundation for a developmental approach to childcare and child protection and high-quality health services (Children’s Act 38 of 2005; Bill of Rights, section 28; National Department of Health, 2014:3). It remains a concern why family caregivers of paediatric oncology patients delay access to healthcare. The goal of the research study is to explore and describe the factors challenging family caregivers of paediatric oncology patients in delaying access to healthcare. The research question driving this study was as follows: What are the factors faced by the family caregivers of paediatric oncology patients, which result in late diagnosis of cancer in children? The health belief model is deemed appropriate in underpinning the study (this is a theoretical framework guiding the study). The objectives of the study are as follows:  to conceptualize and describe paediatric oncology, treatment, access to healthcare systems and the role of family caregivers;  explore and describe the challenges faced by family caregivers of paediatric oncology patients in the community and the health system;  explore and describe the factors that lead to delayed access to healthcare of paediatric oncology patients;  explore and describe the cultural challenges of paediatric oncology family caregivers and to make recommendations to the oncology team to improve accessibility to paediatric oncology care. This study followed a qualitative approach in exploring and describing the factors that delayed family caregivers of paediatric oncology patients to access healthcare. Applied research was selected and deemed suitable as possible practical solutions for the challenges faced by caregivers of paediatric oncology patients. The case study design, particularly the collective case study design, was employed using semi-structured interviews with an interview schedule and a digital voice recorder. The interviews were transcribed verbatim and themes were generated from the data. The following themes and sub-themes emerged from this study: Theme 1: Understanding cancer. Definition of cancer as understood by participants; signs and symptoms experienced by the child; action taken when child got sick; information gained from healthcare professionals regarding the sick child at local healthcare facilities; first knowledge of child’s cancer; and history of cancer in the family. Theme 2: Access to healthcare. Distance to local clinic and hospital; transport, easy access to emergency services and road accessibility; access to traditional healers in the community; and access to a clinic and/or hospital and oncology care. Theme 3: Religion, culture and spirituality. Religion and change in belief since diagnosis; cultural rituals in family during illness or treatment; beliefs about disease and traditional medicine (muthis and/or mbizas used; and belief in Western treatment and hospitals. Theme 4: Communication and language. Experience of communication with health professionals; language spoken, level of understanding of diagnosis when explained and other challenges. Theme 5: Socio-economic status. Employment status, source of income, housing, environment and access to basic needs. Theme 6: Delayed access to healthcare. Healthcare providers, understanding cancer, negligence by parents, traditional healers, time and money and transport. Theme 7: Impact of cancer. Impact of cancer on caregiver, siblings and family and role changes. Theme 8: Intentional and non-intentional delays. Income, awareness of cancer, emotions, bargaining, family beliefs, beliefs in Western medicine, no support systems and other factors. Theme 9: Medical and related costs. Medical aid, payment of medical bills, hospital fee structure and financial challenges. Theme 10: Caregiver responsibility regarding decision-making and support from the father. Theme 11: Recommendations: Recommendations from the participants. The findings of the study showed that there is a significant gap in knowledge about childhood cancer among family caregivers and healthcare professionals in the local healthcare system. It also revealed that the distance to local healthcare facilities disadvantaged users to access healthcare facilities easily. Furthermore, emergency service delays and poor infrastructure were found to have an impact. Moreover, oncology healthcare centres are not easily accessible. Religion was found to be the source of strength for many people and has a potential influence to delay access to healthcare, as people mostly believe in miracles of healing. In terms of spirituality, participants believed in the power of God and their faith seemed to be strengthened as they prayed for healing. As far as culture is concerned, participants understood traditional healing and made a choice to believe either in it, or in Western medicine. However, traditional medicine did not feature strongly. The findings further showed that open communication and language were vital to promote the relationship between patient and service provider. There were instances where the attitudes of healthcare professionals were experienced negatively. Socio-economic status challenged participants as far as affording basic healthcare was concerned. The Government’s proposed NHI brings hope to many in need of medical care. A number of factors delayed access to healthcare, which include spiritual healers, time, money and transport. However, this study showed that caregivers did not intentionally delayed access to healthcare, except for those who preferred to first experiment with other medicine such as traditional medicine from traditional healers. The findings also showed that cancer affects the family systems on a psychological, emotional, economic and social level. Most participants did not have medical aids and struggled to navigate the healthcare system successfully. Because of the challenges they went through, the study revealed that some bad decisions were made regarding the healthcare of the child. The recommendations from the participants were on the importance of health education regarding childhood cancer, screening to improve the early detection of childhood cancer, encouraging caregivers and providing them with support. It is very difficult to obtain optimal healthcare for children if parents and/or caregivers have no insight and are uneducated about childhood cancer. Access to healthcare is also impeded in many communities, through factors such as lack of basic services, lack of roads and infrastructure, and shortage of emergency services and/or malfunctioning emergency vehicles. Religion seemed to be the source of strength for many participants and contributed to the ability to cope with the child’s ill health. Clear communication and open relationship in healthcare facilities was a crucial factor. Diagnosis of cancer affected the families, their function and structures, which seemed to lead to unintentional delay in accessing healthcare. Additional factors also contributed towards the delay in access to healthcare. The use of laymen’s terms instead of medical jargon may encourage a positive relationship between patient and service provider, based on trust and openness. Education of healthcare professionals from primary healthcare on early warning signs of childhood cancer to improve early detection. Childhood cancer to receive more attention in terms of aggressive awareness campaigns and screening. Furthermore, the implementation of NHI in order to improve accessibility and better care for all. Those infected by childhood cancer need psychosocial support to enhance coping mechanisms.