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

Manya Jerina Hendriks,Marcello Ienca,Erika Harju,Katharina Roser,Gisela Michel

doi:10.1186/s12913-021-06543-9

Abstract

BackgroundThe 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.MethodsSemi-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.ResultsThree 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.ConclusionsWith 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.

Highlights

The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades [1, 2]
This study aimed to qualitatively assess the experiences and needs of cancer survivors (CCS) living in Switzerland with a special focus on hardships related to insurance
The Swiss social security system can alleviate the financial burdens for some CCS through, for example, disability benefits [30, 34], structural challenges and social restraint might hinder access to these services

Summary

Introduction

The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades [1, 2]. CCS report higher out-of-pocket medical expenses [13, 14], are more often uninsured [6, 13], face difficulties in obtaining life insurance [15,16,17], and have a higher probability of requiring social security or disability benefits [18]. These kinds of hardship are shown to cause or potentially exacerbate physical and psychological harms [6, 14, 19], including anxiety, stress, and impaired sleep [20]. 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

Objectives

Results

Discussion

Conclusion