The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer

Abstract

Background The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer. Methods Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis. Results Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS’ concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance. Conclusions With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.

Disparities in pediatric cancer survivorship care: A systematic review

“…We screened 7945 citations for relevance, we screened 2760 publications as full text against the prespecified eligibility criteria, and we identified 22 studies (as reported in 61 individual publications) examining disparities in survivorship care for CCS 17–69 . Figure 1 presents the PRISMA flow diagram that visually depicts the number of studies that were both included and excluded at each stage of the review process and the reasons for exclusion.…”

Long-term care, care needs and wellbeing of individuals after cancer in childhood or adolescence (VersKiK): study protocol of a large scale multi-methods non-interventional study

“…The description of the physical and psychological late effects caused by the disease or its treatment for a selected group of cancer diagnoses will help to identify potential limitations and, consequently, suggest improvements to the existing follow-up guidelines. Moreover, it might show existing gaps between the follow-up guidelines and its implementation, thus giving a room for further improvement of follow-up care to balance “medical and psychosocial health with socio-economic hardship” [ 61 ] in paediatric cancer survivors.…”

The Global Status of Universal Health Coverage and Oncology Care

“…The psychosocial pain of cancer, discrimination, experiencing financial toxicity, and stringent behavior of supportive and insurance companies have made the survivors of cancers and their families a vulnerable group (36). Fear of recurrence and distress of the possibility of cancer occurrence in their beloved relatives adds to this vulnerability.…”

“…Fear of recurrence and distress of the possibility of cancer occurrence in their beloved relatives adds to this vulnerability. The problem is more pronounced for childhood cancer survivors (36). This neglected aspect of long-term care of these patients needs to be managed at the individual level by a multiorganization and holistic approach.…”