Living with Diabetes: Literature Review and Secondary Analysis of Qualitative Data

Aim: To review the published qualitative literature on the lived experience of people with diabetes, describe the emerging findings and research methods over the last 25 years, and make recommendations for future research.

Methods: We describe a 'Next-Generation' mixed-method approach to reporting qualitative data that combines the advantages of traditional qualitative analysis (assessing depth of meaning from participants themselves) with those of descriptive analysis (assessing breadth and representativeness). We used our Next-Generation approach to conduct a secondary analysis of qualitative data derived from a systematic search of PubMed. A formal coding scheme was developed and systematically applied to 2050 respondent quotations contained in the 74 selected articles; inter-rater agreement was high (κ = 0.90). Quotations were aggregated at the level of the article and reported to assess both narratives and numerical counts of the data.

Results: The rate of qualitative research on the lived experience of diabetes has increased over the last 25 years. Both positive and negative aspects of lived experience were reported, although the former was less common. Data from many different populations were reported, but most studies emphasized breadth of coverage over depth. Some findings are well established and there is little benefit to repeating these studies. Best practices of qualitative methodology were often not utilized.

Conclusions: The amount of qualitative research in diabetes is substantial and increasing. We recommend that future research be focused on specific understudied topics rather than repeating existing research. We also provide recommendations for how qualitative study methodology can be improved by implementing the Next-Generation approach.