Producing Inequality: How Welfare Institutions Influence and Shape Cancer Experiences – Comparisons Between German and Japanese Patient Narratives

This paper aims to understand the influence of welfare institutions on illness experiences, particularly health insurance and income compensation policies, by comparing narrative interviews with breast- and prostate cancer patients in Germany (n=90 for both cancers) and Japan (n=97 for both cancers). Both countries have a comprehensive social security system. Using the data collected for the project Database of Individual Patient Experiences (DIPEx), two levels of comparison will be sought: 1) country, and 2) disease type, resulting in four analytic groups. Due to language constraints, cross-national comparisons will be based on the analysis within each country is complete with regards to the study question: How do health insurance systems and income compensation policies such as sick leave and disability benefits affect the experience of having cancer?

Preliminary findings show that in both countries breast cancer patients who are generally younger and thus still in the workforce tend to express financial concerns more than prostate cancer patients. However, the impact of financial pressure is more apparent in Japan where out-of-pocket copayments are higher and the terms for sick leave are less favorable to employees, affecting patients’ treatment decisions and the timing of return to work. For German patients who are eligible for early retirement and disability benefits, the diagnosis in many cases does not present financial disaster. However, receiving disability benefits led to stigmatization through the bureaucratic mechanism in place. Subsequently women discussed feelings of shame and worthlessness induced by bureaucratic mechanisms.

The present study will be one of the first studies in which international comparisons on qualitative interview materials that have been collected in different languages and by different interviewers are analyzed within the same research framework. Thus the paper presents important findings on production of inequality in high-income countries, and provides a new methodology for cross-cultural secondary analysis.