Diabetes Distress in Emerging Adulthood: Content Validity of the Problem Areas in Diabetes—Emerging Adult Version (PAID-EA) Using Qualitative Analysis

Abstract

Purpose: The purpose of this study was to explore the emotional work of diabetes during emerging adulthood and to explicate the validity of a newly developed measure of diabetes distress (DD) for use with emerging adults living with type 1 diabetes mellitus (T1DM), the Problem Areas in Diabetes—Emerging Adult version (PAID-EA). Methods: Young people ages 18 to 30 with T1DM were recruited online to complete a cross-sectional survey including measures of DD, depressive symptomology, and the PAID-EA. To evaluate content validity, 2 open-ended questions asked what was the most significant emotion or worry discussed in the survey items and what feelings were missed in those items. Responses were analyzed using directed qualitative content analysis. Results: A total of 254 (87%) participants responded to at least 1 of the 2 open-ended questions. Three themes and 1 subtheme were identified: (1) fear of the future with the subtheme of worry about the cost of diabetes, (2) acute worries about living with diabetes, and (3) challenges with finding support. More PAID-EA items corresponded with these themes than items on the original Problem Areas in Diabetes or Center for Epidemiologic Studies Depression Scale, supporting the validity of the PAID-EA and clarifying the developmental-stage-specific aspects of DD. Conclusions: Emerging adulthood is a period in which the future should hold infinite possibility, but young people with T1DM describe a staggering fear of the future with markedly limited possibilities, supporting the need to measure the developmental-stage-specific experience of DD as captured on the PAID-EA.

Diabetes care in the pandemic era in the Midwestern USA: a semi-structured interview study of the patient perspective

“…MAXQDA (V.22.1.1) was used to conduct thematic analysis across transcripts as follows: a qualitative codebook with a priori deductive codes was developed using the interview guide and preliminary themes based on literature review,14–29 and inductive codes were developed during transcript review and analyst discussion. Each transcript was independently coded in its original language by three coders who were fluent in the language in which the interview was conducted.…”

“…4 10 To equitably address the complex and evolving needs of diabetes care in the pandemic and post-pandemic eras, research must adequately capture the context of care among patients and health systems in communities that are disparately affected by these challenges and yet often underrepresented in research. 13 Prior research has found that social determinants of health, such as financial factors, access to healthcare and psychosocial support have substantial impacts on patients' experience with and outcomes of diabetes care [14][15][16][17][18][19][20][21][22][23][24][25][26][27][28][29] and that these experiences can differ across other, intersecting factors, 19 such as race, ethnicity, language and rurality. However, few of these prior studies were conducted during or after the pandemic's onset, with most recent studies examining the experiences of patients living outside the USA during that time.…”

“…All recordings and transcripts were stored on secure university drives accessible only to members of the study team and retained for further review throughout the analysis. MAXQDA (V.22.1.1) was used to conduct thematic analysis across transcripts as follows: a qualitative codebook with a priori deductive codes was developed using the interview guide and preliminary themes based on literature review, [14][15][16][17][18][19][20][21][22][23][24][25][26][27][28][29] and inductive codes were developed during transcript review and analyst discussion. Each transcript was independently coded in its original language by three coders who were fluent in the language in which the interview was conducted.…”

“…Prior research has found that social determinants of health, such as financial factors, access to healthcare and psychosocial support have substantial impacts on patients’ experience with and outcomes of diabetes care14–29 and that these experiences can differ across other, intersecting factors,19 such as race, ethnicity, language and rurality. However, few of these prior studies were conducted during or after the pandemic’s onset, with most recent studies examining the experiences of patients living outside the USA during that time.…”