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“I Don’t Take for Granted That I Am Doing Well Today”: A Mixed Methods Study on Well-Being, Impact of Cancer, and Supportive Needs in Long-Term Childhood Cancer Survivors
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“I Don’t Take for Granted That I Am Doing Well Today”: A Mixed Methods Study on Well-Being, Impact of Cancer, and Supportive Needs in Long-Term Childhood Cancer Survivors

Nowadays, most children can be cured from cancer and become survivors. This means that more survivors experience physical, social, and emotional difficulties after being cured. Still, few survivors get care that goes beyond the medical impact of cancer. The social and emotional wellbeing of survivors is often not addressed by healthcare professionals. Knowing about the unmet needs of survivors can give healthcare professionals important information on how to help survivors and also address their social or emotional problems and/or concerns. In this study, the authors have explored in-depth the experiences of survivors living in Switzerland on their wellbeing, impact of cancer and unmet needs in care. Results show that the majority of survivors has many unmet needs and indicates the current lack of specific psychosocial care. Hopefully, these findings will encourage healthcare professionals to develop services and provide care tailored to survivors’ unmet needs.

Year:2021

With increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS’ need for support services that can mitigate the long-term impact on psychosocial well-being, including health-related quality of life (HRQOL). This publication aimed to describe survivors’ well-being, the impact of cancer, and supportive care needs and to determine how socio-demographic or clinical characteristics and the impact of cancer relate to survivors’ unmet needs.

In this mixed methods study, a quantitative survey was used to assess health-related quality of life HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of well-being, health, and the impact of cancer.
Overall, 69 CCS participated in the survey of which 28 participated in qualitative interviews. Health was considered to encompass both: physical and emotional aspects of well-being. Cancer positively impacted CCS’ ability to care and attitude towards life, whereas relationships and insurance were negatively impacted. Risks for unmet needs increased in CCS with self-reported low health status, late effects, psychological distress, with older age at study or longer time since the end of treatment.

In this study, many CCSs experienced various psychosocial, psychological and informational unmet needs, indicating that survivors’ needs are currently not duly addressed. Current efforts to provide supportive psychosocial care should be further operationalized to provide adequate support.

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