The Experiences Of Primary Caregivers Of Children With Cancer

Gunes, Elifnur (2025) The Experiences Of Primary Caregivers Of Children With Cancer. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Background Childhood cancers are life-threatening diseases that affect the child’s entire family. Understanding the experiences of primary caregivers of children with cancer is vital. In the UK there is limited research exploring the parental perspective of children with cancer and therefore an inadequate understanding of the experiences of these caregivers. Aim The purpose of this phenomenological study was to explore the lived experiences of primary caregivers of children with cancer. Methods A family systems theoretical framework and phenomenological research method were used. Data was collected using purposive sampling and semi-structured in-depth interviews, and analysed via interpretative phenomenological analysis (IPA). Participants were recruited from charities across England. Five mothers participated in the study. Results Six superordinate themes were identified: “I learned what I needed to learn”, “Complexity challenging the cancer journey”, “Intersectional complexity in care”, “A range of emotions”, “Cancer-related changes”, and “Impact of cancer”. The findings demonstrate the challenging nature and complexity of what it means to parent a child with cancer-autism and Down’s syndrome and how parents make sense of this. Gaps identified include a lack of research on primary caregivers of children with cancer with learning disabilities. Conclusions This study highlights how having a child with cancer, and additionally a learning disability or neurodiversity, is experienced as a caregiver and is one of the first studies to include this narrative. The research uniquely addresses the multifaceted challenges faced by these families, including the intersection of cancer, neurodiversity, and learning disabilities. Carers in paediatric cancer and disability contexts face complex challenges that appear under-reported. Understanding primary caregivers’ experiences of paediatric oncological care is important to inform present and future healthcare responses. The study emphasises the importance of support for these caregivers and offers insights on how healthcare services can be improved to meet their specific needs. The research and clinical implications of the findings are discussed, the limitations of the current study are identified and recommendations for future studies in this field are also offered.