Lived Experiences of Newly Diagnosed Type 1 Diabetes Mellitus Children and Adolescents in Uganda

Abstract

Introduction

The first-year post-diagnosis is the most challenging and stressful period in the lifetime of a young child and adolescent living with diabetes, given the adjustments that are meant to be adopted. Therefore, psychosocial factors affecting newly diagnosed children and adolescents need to be well understood and children supported to improve treatment adherence. However, evidence concerning psychosocial experiences among young patients with diabetes is scant in Uganda. This study explores the perceptions and experiences of newly diagnosed children and adolescents in Uganda.

Methods

A qualitative exploratory design was employed. We recruited participants aged 6 to <18 years diagnosed within twelve months from three study sites: Mulago National Referral Hospital, Wakiso HCIV, and St Francis Nsambya Hospital. Twenty in-depth interviews were conducted, and textual data were analysed thematically using a framework approach.

Results

We identified five themes: battling with symptoms, emotions at diagnosis, challenges in coping with diabetes management, changes I have made, and positive outcomes registered. The analysis found that young people living with diabetes experience a new world of adjustments, including insulin therapy, routine blood glucose monitoring, and dietary changes that are often difficult to deal with, especially in the first year after diagnosis.

Discussion

Continuous psychosocial support to newly diagnosed young children and adolescents with T1DM is vital. Addressing psychosocial challenges may improve adherence to treatment regimens.

Conclusion

Our findings have demonstrated the mixed experiences of newly diagnosed young children and adolescents living with diabetes, from anxiety and stigmatization to independence.

Keywords:

• children
• diabetes
• perceptions
• lived experiences
• Uganda

Data Sharing Statement

The data is not publicly available in line with confidentiality and privacy protection but is available from the corresponding author upon reasonable request.

Ethical Approval

Ethical standards Ethical approval was obtained from the Institutional Human Ethics Committee of the Central University of Kerala- India on 14th July 2020 (CUK/IHEC/2020/05), St. Francis Hospital Nsambya, Uganda on 1st June 2020 (SFHN/REC/147) and the College of Health, Medicine and Life Sciences, Brunel University London on 20th May 2022 (36782-LR-May/2022- 39360-2). The study received a research permit from the Uganda National Council of Science and Technology on 17th November 2020 (HS759ES). Administrative clearances from all study sites were obtained prior to commencing data collection. Study procedures were performed in accordance with the Helsinki Declaration of 1964 and its later amendments.

Consent to Participate

Signed informed consent was obtained from parents and guardians, with further assent from the children and adolescents before being recruited.

Consent to Publish

All participants, parents, and caregivers consented to publish the findings, including anonymised responses.

Acknowledgments

Special appreciation goes to our study participants, parents, and caregivers for participating and sharing their experiences. Special appreciation goes to our study participants, parents, and caregivers for participating. Appreciation is extended to the management of the CDiC^® program, Professor Silver Bahendeka, Denis Mubangizi, and Wenceslaus Sseguya. We also express our gratitude to the clinic nurse Sr. Jane Nakyejwe for the support rendered to this study.

Elezebeth Mathews is supported by a Clinical and Public Health Early Career Fellowship (grant number IA/CPHE/17/1/503345) from the DBT India Alliance/Wellcome Trust‐Department of Biotechnology India Alliance (2018–2023).

Author Contributions

All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work. All authors read and approved the final submitted version.

Disclosure

All authors declare that they have no conflicts of interest in relation to this work.

Additional information

Funding

This study was supported through a research grant to Jonathan Nsamba by Researchers for Global Health, a joint initiative by researchers from the University of Zurich-Switzerland, and the Infectious Diseases Institute (IDI) of Makerere University-Uganda. The funders had no role in the study design, data collection and analysis, publishing decisions or manuscript preparation.