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Telling the Story of Childhood Cancer—The Experience of Families After Treatment

P. Slater

Published 2019 in Journal of Patient Experience

ABSTRACT

Background: The Discovery Interview methodology was introduced to Oncology Services Group in 2012 as a service improvement strategy and was evaluated positively by staff and families. It enabled clinical staff to hear the deidentified families’ stories, understand their experience, and implement process and practice enhancements. Objective: This study collected family stories following treatment for childhood cancer at the tertiary center in Queensland, with the goal of raising awareness and improving family experience. Method: Twenty-five families were interviewed via an interview spine which covered the major stages of cancer treatment and themes were extracted. Results: Major themes were psychological support needs, adapting to the new normal, and rebuilding relationships. After treatment, the parent had time to reflect on their experience and lost the reassurance of regularly attending the tertiary hospital. There was ongoing anxiety regarding relapse. Parents reported various coping strategies and some wanted to maintain contact with other oncology families. Families strived to get back to a level of normality such as attending school and experienced some challenges in relationships with family and friends. Conclusion: Families needed support and reassurance from their local health professionals to navigate the ongoing challenges following treatment.

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