Abstract
ObjectiveTo describe the experience of parenting a child diagnosed with cancer by examining particularly negative and positive experiences reported by parents of childhood cancer survivors and parents of children lost to cancer.Methods168 parents (88 mothers, 80 fathers) participated. Data were collected five years after the end of successful treatment or the child’s death. The parents’ experiences were identified by open-ended semi-structured questions about particularly negative and positive experiences of the child’s cancer. An inductive approach was used in which the manifest verbal content of the answers was analysed using content analysis.ResultsThe analysis revealed eight categories of negative experience (child late effects; distressing events; healthcare; impaired relationships; long-term psychological consequences; own reactions; surrounding institutions; the fact that the child got cancer) and seven categories of positive experience (healthcare; improved relationships; long-term consequences for the child; personal development; support systems; treatment outcome; unexpected joy). The categories were related to past events or to the present situation. The findings indicate variations in experiences between parents of survivors and bereaved parents, and between fathers and mothers, as some experiences were only reported by parents of survivors and some experiences were only reported by mothers.ConclusionsThe results highlight the importance of past and present events to parents, and accordingly the long-lasting impact of paediatric cancer on parents. The results also point to the wide range of negative as well as positive experiences involved in parenting a child diagnosed with cancer, and provide a comprehensive understanding of the overall experience for parents of children with cancer. Specifically, the findings give guidance to healthcare providers by illustrating the need to provide healthcare personnel with continuous training in communication skills, offering parents opportunities to meet other parents in the same situation and increasing the access to psychosocial supportive services and psychological care.
Highlights
Even though the overall survival rate for childhood cancer has improved dramatically over the past decades [1] childhood cancer still constitutes a serious threat to the child’s life, imposing multiple sources of stress for the affected child and its family [2,3]
The results point to the wide range of negative as well as positive experiences involved in parenting a child diagnosed with cancer, and provide a comprehensive understanding of the overall experience for parents of children with cancer
For children who had gone through transplantation it was decided, by discussion with paediatric oncologists, that six months after transplantation should be considered equivalent to the end of successful treatment
Summary
Even though the overall survival rate for childhood cancer has improved dramatically over the past decades [1] childhood cancer still constitutes a serious threat to the child’s life, imposing multiple sources of stress for the affected child and its family [2,3]. Parenting a child diagnosed with cancer involves numerous challenging events, often over a long time [3]. To reach a comprehensive understanding of this experience it is important to map the events that parents recognise as negative as well as positive. In terms of negative experiences, previous research has reported that parents of children being treated for cancer perceive seeing the child very ill and suffering from treatment side effects [9,10] and supporting the child through painful medical procedures [11] as upsetting. Studies examining which of these experiences, or possibly other experiences omitted in the previous literature, parents perceive as negative in a long-term perspective are lacking
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