Mothers’ Experiences Post-Childhood Cancer Treatment: A Qualitative Study

• Published in: Journal of child and family studies 2023-09, Vol.32 (9), p.2614-2624
• Main Authors: Davies, Jenny, O’Connor, Moira
• Format: Article
• Language: English
• Subjects: Behavioral Science and Psychology; Cancer; Cancer therapies; Child and School Psychology; Childhood; Clinical outcomes; Emotions; Families & family life; Fear & phobias; Guilt; Individual Needs; Medical diagnosis; Mothers; Notices; Original Paper; Pediatrics; Phenomenology; Psychological distress; Psychology; Regret; Relapse; Self care; Siblings; Social media; Social Sciences; Sociology; Treatment needs
• ISSN: 1062-1024; 1573-2843
• DOI: 10.1007/s10826-022-02379-x

Every year in Australia, ~770 children aged under 15 years of age are diagnosed with cancer. Due to the increasing incidence and survival rates of paediatric cancer more families are contending with life post-childhood cancer. Research has demonstrated that mothers of children with cancer experience significant psychological distress. Our study explored the lived experiences of mothers of children diagnosed with cancer after completion of treatment. We recruited participants via notices distributed at a childhood cancer support group and on childhood cancer social media sites. The sample consisted of 14 mothers (aged 35–57 years, M  = 45) whose children had completed treatment. Children’s age at diagnosis ranged from 14 months to 16 years old, 57% ( n  = 8) were male and 42% ( n  = 6) female. Our study employed a qualitative design using a phenomenological approach. Mothers participated in semi-structured face-to-face interviews. Six themes were identified: cast adrift; fear never ends; guilt and loss (containing two sub-themes: siblings: ongoing guilt & lost opportunities; lack of self-care; everything is different (containing three sub-themes: lost connections; reassessment; and peer support); and a way forward. Our findings suggest mothers experience substantial negative effects. They often struggled to manage complex emotions and develop a new way of ‘mothering’ their children following cancer treatment. Mothers feared relapse and late effects and felt guilt about impact on siblings. These findings contribute to an understanding of mothers’ lived experience of childhood cancer, highlighting the need to improve post-treatment services. Findings can be used to formulate improvements in end of treatment. Highlight Due to increasing incidence and survival rates of paediatric cancer more families are contending with life post treatment. After treatment mothers must adjust to new identities as mothers of children who have been diagnosed with cancer. Fear of relapse and late effects makes it difficult for mothers to develop a new narrative for their children and themselves. Mothers felt guilt and regret about impact of childhood cancer on siblings and this guilt did not dissipate after EOT. There is a need for more practical and psychological support tailored to mothers’ individual needs.