‘A permanent scar’ : exploring the long-term experiences of parents/caregivers after their child’s cancer treatment : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Clinical Psychology at Massey University, Auckland, New Zealand
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Date
2023
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Massey University
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Abstract
Due to medical advancements, the prognosis of childhood cancer has significantly improved. This means that more families are contending with life after cancer. Yet, research shows that some parents/caregivers continue to experience psychological distress for many years after the successful completion of their child’s cancer treatment. The present study employed a social constructionist lens to qualitatively explore the long-term experiences of parents/caregivers after their child’s cancer treatment. Semi-structured interviews were utilised to explore the experiences of ten parents/caregivers whose child had finished active cancer treatment and was at least five years post-diagnosis. The findings generated the fundamental idea that ‘The Cancer Experience Remains With You’. This idea reflected the cancer’s continued impact and significant disruption to parents’/caregivers’ belief systems and lives in the long-term. This central organising concept held three themes with several subthemes: ‘Views about One’s Self’ (‘identity’, ‘purpose and meaning’, ‘suffering from memories’), ‘Views about the World’ (‘isolation’, ‘connection’, ‘vulnerability’), ‘Views about the Future’ (‘uncertainty’, ‘loss of an imagined future’). These findings suggest that the experience of their child’s cancer was heavily integrated into parents’/caregivers’ long-term self-concept, biography, relationships in the world, and expectations for the future. This research highlights the lasting presence of the childhood cancer experience and how this conflicts with societal expectations, which contributes to an understanding of parents’/caregivers’ experiences in the long-term after their child’s cancer treatment. The findings can be used to improve connection and support to those affected by childhood cancer through the terminology used and psychosocial support provided, with the aim of lessening the burden of the “permanent scar”.
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parents, caregivers, childhood cancer, long-term experiences, post-treatment, New Zealand, psychology