Exploring the Social and Stigma-Related Lived Experiences of Pediatric Cancer Survivors in a Canadian Province.
In interviews with seven pediatric cancer survivors from Newfoundland and Labrador, the study identified themes involving isolation, school-based stigma, social support, inadequate professional mental-health support, resilience, and disability-related workplace experiences.
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In interviews with seven pediatric cancer survivors from Newfoundland and Labrador, the study identified themes involving isolation, school-based stigma, social support, inadequate professional mental-health support, resilience, and disability-related workplace experiences.
Research significance
The reported experiences suggest—but do not test—that survivor-focused mental-health services, school anti-stigma measures, and tailored social-support programs could reduce isolation and improve psychosocial outcomes after pediatric cancer.
Source abstract
Background: Worldwide, around 400,000 children are diagnosed with cancer every year. Understanding survivors' social and stigma-related experiences may help address their needs and improve their outcomes. Objectives: To explore the social and stigma-related experiences, coping strategies, and support needs of pediatric cancer survivors in Newfoundland and Labrador, a province of Canada. Methods: This is a qualitative, cross-sectional study focusing on retrospective participant experiences. Eligibility criteria included being diagnosed with cancer before the age of 18 and being diagnosed or treated in the province. Extensive recruitment activities were employed. Data collection occurred through semi-structured virtual interviews and completion of a sociodemographic survey. Participant interviews were transcribed verbatim, and themes were identified iteratively through inductive thematic analysis. Descriptive statistics were used to define the participants' sociodemographic characteristics. Results: Seven participants were recruited. Thematic analysis identified five major themes: (i) isolation and being treated differently; (ii) support received, coping mechanisms, and support needs; (iii) resilience and interest to give back; (iv) workplace and disability related experiences; and (v) additional impacts of cancer. Our results showed that participants received substantial social support in various ways but inadequate professional mental health support. School was a significant setting for cancer-related stigmatization. Discrimination in the workplace was rare and was disability-related rather than cancer-related. Conclusions: Our results show that there are significant issues to address, such as stigma and isolation experienced by pediatric cancer survivors as well as the need to improve the psychosocial support programs offered to them. Our results also show that the participants had distinct lived experiences compared to adult-onset cancer populations. Overall, the findings presented are expected to inform further studies and healthcare-education policies to help address these issues and improve the experiences of pediatric cancer survivors.