Living with Type 1 Diabetes as Experienced by Adults with Prolonged Elevated HbA1c: A Qualitative Study

• Published in: Diabetes therapy Vol. 14; no. 10; pp. 1673 - 1684
• Main Authors: Wijk, Ingrid, Amsberg, Susanne, Andreassen Gleissman, Sissel, Toft, Eva, Anderbro, Therese, Johansson, Unn-Britt
• Format: Journal Article
• Language: English
• Published: Cheshire Springer Healthcare 01.10.2023; Springer; Springer Nature B.V
• Subjects: Adults; Analysis; Cardiology; Care and treatment; Content analysis; Diabetes; Disease management; Endocrinology; Experiences; Glucose; Glycosylated hemoglobin; HbA1c; Internal Medicine; Medical care; Medicin och hälsovetenskap; Medicine; Medicine & Public Health; Original Research; Patients; Psychology; psykologi; Qualitative research; Quality management; Quality of life; Type 1 diabetes; Type 1 diabetes; Sweden; Qualitative research; Adults; HbA1c; Experiences; Content analysis; Type 1 diabetes
• ISSN: 1869-6953; 1869-6961; 1869-6961
• DOI: 10.1007/s13300-023-01443-z

Introduction High HbA1c levels in type 1 diabetes (T1D) are associated with increased risk of micro- and macrovascular complications and severe diabetes distress. A more comprehensive understanding of the adult perspective of living with T1D can improve the quality of care. We aimed to describe experiences of living with T1D as an adult with prolonged elevated HbA1c. Methods Thirteen adults with T1D and HbA1c > 60 mmol/mol (7.6%) for at least 1 year were individually interviewed via a digital platform. The interviews were transcribed verbatim and analyzed using qualitative content analysis. Results The analysis identified an overarching theme, “a lifelong follower”, and generated two main categories describing study participants’ experience: constraining and manageable. Constraining experiences were explained in obligated control, loss of control, environmental impact, and consequences of diabetes. Manageable experiences were described in everyday life, approach to diabetes, and support in life. Diabetes knowledge in health care and in the general public, and individualized care were important factors in feeling understood, safe, and supported. Conclusions The findings revealed the diverse experiences of adults with prolonged elevated HbA1c. Living with T1D, a lifelong non-chosen follower, could be perceived as constraining but manageable in different degrees. A person-centered care approach addressing both dimensions may be beneficial. Experiences of living with and managing diabetes are multifaceted and intertwined with life context and medical prerequisites.