RESUMO
Parental involvement in childhood cancer care is of utmost importance, but the understanding of parental recognition, appraisal, and reactions to childhood cancer in settings such as Ghana is limited. We conducted an empirical phenomenological study to explore these aspects among Ghanaian parents. Twenty parents were purposively sampled to participate in semi-structured interviews between June and September 2022. All interviews were transcribed and analysed using an inductive thematic approach. We found that parents recognised symptoms through personal observation and their child's self-report, often perceiving them as non-severe. Emotional reactions upon receiving their child's cancer diagnosis included psychological distress, fear, doubts, and confusion. Enduring emotions experienced by parents were fears of disease recurrence and impending death of their child. Parents assumed the role of nurses at home, monitoring therapy effects, managing pain and symptoms, and dressing wounds. In conclusion, parents in Ghana play a crucial role in the recognition, diagnosis, and treatment pathways of childhood cancer. To enhance their ability to recognise symptoms and take timely actions, it is recommended to implement media programs and health education initiatives targeting parents.
RESUMO
BACKGROUND: The physical demands of caring for children and adolescents diagnosed with cancer, over a lengthy period, exert significant strain on the health and well-being of family caregivers. The capacity of family caregivers to surmount and cope with the various strains they experience due to the diagnosis and treatment trajectory is essential to the quality of life of the child and adolescent who has been diagnosed with cancer. However, the experiences of family caregivers have been under-explored. This study explored the strains, resources, and coping strategies of family caregivers of children and adolescents diagnosed with cancer in Ghana. METHODS: Guided by a descriptive phenomenological design, 20 semi-structured interviews with family caregivers were conducted at a tertiary health facility that provides paediatric oncology services. The study was conducted between June and October 2022. The interviews were transcribed verbatim, translated and coded using NVivo software. An inductive thematic analysis approach using Vaismoradi et al.'s thematic analysis framework was followed in analysing the data. RESULTS: The study revealed that family caregivers of children diagnosed with cancer experienced three main strains: somatic strains (poor sleep quality, loss of appetite, and unintended weight loss), economic strains (financial burden and loss of economic livelihood), and psychosocial strains (isolation from social activities and network, frustration and helplessness, and balancing multiple family needs). The following themes emerged as coping resources: family cohesiveness, community support, and support from health care providers. Coping strategies that emerged included trusting in God and being self-motivated. CONCLUSION: The study concludes that family caregivers experience somatic, economic, and psychosocial strains. However, they can leverage available resources (family cohesiveness, community support, and support from healthcare providers) to cope with these strains. There is a need to educate and sensitize family caregivers about the potential strains that they are likely to experience prior to the assumption of care roles. Also, the formal inclusion of non-governmental organizations and religious bodies will ensure that family caregivers receive sufficient community support to cope with the strains of caregiving.
