Long-term adjustment : perceptions of paediatric cancer survivors

Abstract

Treatment of paediatric cancer over the past two decades has led to dramatic increases in survival rates. In 1960, only 1 in 1000 children survived beyond one year of treatment, while in 1990 approximately 80% were expected to survive five years following treatment. Our study explored, through grounded theory methodology, how the experience of paediatric cancer influences the life experiences and long-term adjustment of survivors now in adulthood.

Interviews were conducted in two provinces (SK and BC) with 18 survivors. Data were analysed following grounded theory principles and led to the emergence of a theoretical framework. The participants in this study were engaging in a process of moving on from their cancer experience and history. A number of conditions were found to influence the participants' ability to move on including: social support, feelings of powerlessness, fears of recurrence, ability to cope with cancer diagnosis and treatment, ability to accept their history of cancer, and having had cancer when they were young. These conditions influenced their ability to engage in strategies that were used to move on including: maintaining health, seeking information, normalising, and not dwelling on their cancer history. The consequences of these strategies and moving on were an ability to find positive meaning in their cancer experience, to recognise the importance of living life to the fullest, and feelings of empowerment with regards to their cancer history and follow-up.

Overall, this sample of long-term survivors more often looked at the positive aspects of their encounter with cancer, in many instances incorporating these aspects into their lives while recognising the importance of moving on and looking to the future. However, the results from this study indicate that a subset of this population, those with visible late-effects and brain tumour survivors, have more needs and experience difficulty with regards to long-term adjustment.

This study has implications for clinical practice including: continued awareness of the importance and role of social support and normalising strategies during treatment and long-term survivorship, the creation of an informal "get-together" for survivors to facilitate sharing of experiences, as well as advocacy and assistance for those with late-effects from treatment. Implications for further research include: a family systems approach to long-term survivorship, understanding how to facilitate the transitions related to entering adulthood, and a focus on the unique issues and needs of brain tumour survivors and those with late-effects.