Abstract
ObjectiveTo establish the major expressed psychological needs of adult survivors of childhood cancer living in Ireland.MethodsSeven focus groups were conducted with adult survivors of childhood cancer and their parents in 2018. Survivors were invited to participate if they were diagnosed with cancer before age 18.ResultsThirty‐three participants (15 survivors, 18 parents; 27 female, 6 male) were included. They had experienced a range of haematological and solid tumours. Five themes were generated: (a) Enduring psychological impact on survivors; many survivors experience delayed trauma and mental health crises in adulthood. (b) Enduring psychological impact on family members; parents and siblings have unmet psychological needs relating to the family's experience of cancer. (c) Enduring impact on family dynamics; survivors and parents expressed fear and guilt relating to cancer which impacted on family interactions. (d) Challenges accessing support; psychological support services are inadequate to meet expressed needs. (e) Desired model of care; no single service model appeals to all survivors, and flexibility is required in the delivery of psychological support.ConclusionAdult survivors of childhood cancer and their family members experience enduring psychological effects relating to their diagnosis and treatment. Psychological support services are inadequate to meet the expressed needs of this growing population.
Highlights
Treatment outcomes for childhood cancer have consistently improved over recent decades, and the overall 5-year survival rate for childhood cancer in Ireland is over 80% (National Cancer Strategy 2017–2026, 2017)
Some survivors experience anxiety relating to their health many years after completing their active cancer treatment, and adult survivors experience significantly higher levels of mental health dysfunction compared with the general population (Fidler et al, 2015)
Delayed trauma was commonly experienced by survivors several years after finishing treatment. This culminated in a serious mental health crisis requiring intervention. This is consistent with previous research from the UK and USA which identified higher levels of mental health difficulties and psychological distress among childhood cancer survivors compared with the general population (Fidler et al, 2015; Zeltzer et al, 2009), and higher levels of mental health service utilisation among survivors in Denmark (Lund et al, 2013)
Summary
Treatment outcomes for childhood cancer have consistently improved over recent decades, and the overall 5-year survival rate for childhood cancer in Ireland is over 80% (National Cancer Strategy 2017–2026, 2017). Some survivors face a range of medical challenges relating to late treatment effects They are at heightened risk of complications such as recurrence of their primary cancer, secondary cancers, cardiac disease, infertility, ototoxicity or bone disease (Clemens et al, 2016; den Hoed et al, 2015; Gibson et al, 2018; Khan et al, 2018; Taylor et al, 2009; Wasilewski-Masker et al, 2008). This can result in frequent ongoing contact with the health service and repeated hospitalisations (Brewster et al, 2014; de Fine Licht et al, 2017). Large-scale longitudinal studies have demonstrated higher rates of hospitalisation for mental disorders among survivors of childhood cancer (Lund et al, 2013), and higher prescription rates for anti-depressants in this group (Deyell et al, 2013; Johannsdottir et al, 2017; Lund et al, 2015)
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