Designing a brief and simple intervention to help young people with type 1 diabetes to live well: Protocol for developing a novel intervention with participation from young people

PLOS ONE STUDY PROTOCOL Designing a brief and simple intervention to help young people with type 1 diabetes to live well: Protocol for developing a novel intervention with participation from young people Samantha Howland ID*, Jörg Huber, Catherine Aicken ID a1111111111 a1111111111 a1111111111 a1111111111 a1111111111 School of Sport and Health Sciences, University of Brighton, Brighton, United Kingdom * Abstract OPEN ACCESS Citation: Howland S, Huber J, Aicken C (2023) Designing a brief and simple intervention to help young people with type 1 diabetes to live well: Protocol for developing a novel intervention with participation from young people. PLoS ONE 18(9): e0285300. https://doi.org/10.1371/journal. pone.0285300 Editor: Lea Sacca, Florida Atlantic University Charles E Schmidt College of Medicine, UNITED STATES Received: April 18, 2023 Accepted: August 7, 2023 Published: September 8, 2023 Copyright: © 2023 Howland et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability Statement: Deidentified research data will be made publicly available when the study is completed and published. Funding: This research is funded by a studentship to the first author, provided by University of Brighton as part of its partnership activities with the National Institute for Health Research (NIHR) Applied Research Collaboration Kent, Surrey, Sussex. The funders did not and will not have a Young people living with type 1 diabetes (T1D) navigate daily complex diabetes related tasks as they take on increasing (and eventually full) responsibility for managing their condition, in addition to developing their lives as independent adults. Alongside the need for careful day-to-day diabetes management, the psychosocial burden and mental health impact and stigma are well recognised. Despite advances in psychological care, many young people with diabetes still experience a greater mental health burden than those without diabetes. This study aims to develop a brief and simple intervention for young people with T1D that will support their wellbeing day to day, as required, and grow their ability to live confidently with their condition that requires lifelong meticulous management. Insights gained in this participatory study will guide the development and focus of the intervention which may involve a toolkit containing self-guided resources or which could be a series of recommendations on how to design a healthcare service with a support network that is tailored to the needs of young people. This study will consist of qualitative research and collaboration with young people with T1D and their siblings, friends, and peers to co-create a testable intervention. In Part 1, research interviews will be conducted with young people (16–24 years old) with T1D and, where possible, their siblings/peers to understand the day-to-day challenges of type 1 and what a novel intervention should address. Thematic analysis of interviews will inform the generation of a prototype intervention to take into part two, focus group discussions. Focus groups with (i) young people with T1D and, separately (ii) carers (comprising parents, carers, teachers, specialist nurses). Collaborative principles will be used to review, redesign and evolve the intervention to meet user needs. A blend of narrative and thematic analysis will inform the findings and report. Insights from Parts 1 and 2 will shape a userdefined and formatively analysed brief and simple intervention and future study design ready for pilot testing. The aim of this part of the research is to maximise acceptability and usability of a testable intervention by the target population. To aim of the future intervention will be to demonstrate effectiveness in helping young adults to live well with T1D. PLOS ONE | https://doi.org/10.1371/journal.pone.0285300 September 8, 2023 1 / 18 PLOS ONE role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Competing interests: The authors have declared that no competing interests exist. Living Well with Type 1 Diabetes - Designing a brief and simple intervention for young people Introduction It is well recognised that young people transitioning from dependent living as a child or adolescent to independent living as a young adult experience huge changes within many, if not all, aspects of their lives (e.g. peer groups, relationships, geographic location, day-to-day activities at school/ college / university / work, emotional development). Those living with type 1 diabetes need to navigate the added complexity of managing their condition as they take on full responsibility for their diabetes [1]. Life-altering complications are a significant concern with diabetes and studies have shown that risk of developing such complications can be reduced by diligent management and intensive control of blood sugar [2–4]. Regular health review and care is advocated for everyone with diabetes [5–7] to aid prevention, identification and early intervention of any complications of disease. Accepting the complexities of “adherence to treatment and regular health-related tasks” (willingness, ability, intent, confusion, forgetfulness, definition and measurement of success, etc) more than half of young people with chronic conditions may exhibit so called “non-adherent” behaviour [8, 9] (i.e., intentional or unintentional behaviours related to insulin dosing, glucose monitoring, diet, exercise, or healthcare review that do not align with medical advice). Despite the risks of life-altering complications, diabetes seems to be no exception. Adherence, in the context of young people with diabetes, can be considered as the extent to which a person’s behaviour coincides with medical advice [10] to conduct diabetes-related tasks and includes reacting accordingly to enable or restabilize glucose levels, attend regular appointments with health professionals, etc. Studies have shown that younger adults, including but not limited to transition clinics, are also less likely to attend diabetes health appointments than other age groups [11]. The characteristics of young adulthood are highly variable demographically, reflecting the diverse choices and constraints facing the individual as they explore possible life directions. Young adults typically do not see themselves as adolescents, but many of them also do not see themselves entirely as adults [12]. Their self-perception and self-identity can vary by circumstance and emotion. For the young adult with diabetes, complex day to day tasks of managing diabetes can therefore be either overlooked in the milieu of other priorities or hidden in order to “fit in” [1]. Where self-management tasks are performed these can cause feelings of stigma, anger, selfresentment (...truncated)