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Living with type 1 diabetes as experienced by adults with prolonged elevated HbA1c: A qualitative study
Sophiahemmet University.ORCID iD: 0000-0001-8967-1342
Sophiahemmet University.ORCID iD: 0000-0002-9929-4779
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2023 (English)In: Diabetes Therapy, ISSN 1869-6953, E-ISSN 1869-6961Article in journal (Refereed) Epub ahead of print
Abstract [en]

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.

Place, publisher, year, edition, pages
2023.
Keywords [en]
Adults, Content analysis, Experiences, HbA1c, Qualitative research, Type 1 diabetes
National Category
Endocrinology and Diabetes
Identifiers
URN: urn:nbn:se:shh:diva-4996DOI: 10.1007/s13300-023-01443-zPubMedID: 37470946OAI: oai:DiVA.org:shh-4996DiVA, id: diva2:1794792
Available from: 2023-09-06 Created: 2023-09-06 Last updated: 2023-10-02Bibliographically approved
In thesis
1. Experiences of living with type 1 diabetes and improving psychological flexibility through an Acceptance and Commitment Therapy (ACT) intervention
Open this publication in new window or tab >>Experiences of living with type 1 diabetes and improving psychological flexibility through an Acceptance and Commitment Therapy (ACT) intervention
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Impaired psychological health in type 1 diabetes is prevalent and associated with elevated glycaemic outcomes. International evidence-based guidelines have defined glycaemic treatment targets to prevent acute and long-term complications. In addition, the guidelines encourage screening for the elevated distress that living with type 1 diabetes may imply. There is a need to gain further understanding of what it means to live with type 1 diabetes as an adult with elevated HbA1c and to develop interventions to promote psychological and physiological health.

Aim: The overall aim of the thesis was to describe experiences of living with type 1 diabetes as an adult with elevated HbA1c and furthermore to evaluate the impact of an Acceptance and Commitment Therapy programme for people living with type 1 diabetes. The thesis also aimed to examine the Swedish version of Acceptance and Action Diabetes Questionnaire (AADQ), which is a questionnaire for psychological flexibility related to diabetes.

Method and result: In Study I we included 81 adults with type 1 diabetes and HbA1c > 60 mmol/mol in a randomised controlled trial. A seven-session programme based on Acceptance and Commitment Therapy was conducted and the impact on HbA1c, self-management and psychosocial factors was evaluated. No effect was demonstrated in the linear mixed model analysis on HbA1c or the secondary outcomes. Nevertheless, a significant statistical improvement in psychological flexibility was noted one and two years after the intervention. A large drop-out rate was observed in the study. In Study II, the psychometric properties of a translated version of the AADQ were examined through Rasch analysis. A total of 120 adults with type 1 diabetes were included. The Swedish version of the ADDQ showed acceptable psychometric properties such as fit to the Rasch model and person separation index. However, we also found indications on a malfunctioning categorisation of the response categories. A collapsed three category rating was examined. In Study III, two categories of experiences were described in the qualitative interviews: constraining and manageable. Through content analysis, an overarching theme was created "a life-long follower". The theme describes the unrelenting existence of type 1 diabetes that impact life in various degrees.

Conclusion: No impact on HbA1c or secondary outcomes could be demonstrated through the Acceptance and Commitment Therapy based programme. At the same time, a key component in psychological health, psychological flexibility, was improved. The Swedish version of the AADQ showed acceptable psychometric quality. However, uncertainties regarding the categorisation should be further examined. The experiences of living with type 1 diabetes as an adult and elevated HbA1c is widely diverse. A person-centred care approach is therefore crucial to support the needs of each unique person with type 1 diabetes.

Place, publisher, year, edition, pages
Stockholm: Sophiahemmet, 2023. p. 75 [8]
Series
Sophiahemmet University Dissertations, ISSN 2004-7479, E-ISSN 2004-7460 ; 2
National Category
Health Sciences
Identifiers
urn:nbn:se:shh:diva-5020 (URN)978-91-988733-2-0 (ISBN)978-91-988733-3-7 (ISBN)
Public defence
2023-10-27, Weitnersalen, Sophiahemmet Högskola, Valhallavägen 91, hus R, Stockholm, 09:30 (Swedish)
Opponent
Supervisors
Available from: 2023-10-02 Created: 2023-10-02 Last updated: 2024-05-15Bibliographically approved

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Wijk, IngridAndreassen Gleissman, SisselJohansson, Unn-Britt

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