Sinead Pembroke1, Edna F Roche2, Betsy Sleath3, Maria Brenner4, Carol Hilliard5, Declan Cody6, Imelda Coyne4. 1. School of Nursing and Midwifery, Trinity College Dublin, the University of Dublin College Green, 24 D'Olier Street, Trinity College Dublin, Dublin 2, Ireland. Electronic address: pembroks@tcd.ie. 2. Department of Endocrinology and Diabetes, Children's Health Ireland, Tallaght, Dublin 24, Ireland; School of Medicine, Trinity College Dublin, the University of Dublin College Green, Dublin 2, Ireland. 3. University of North Carolina at Chapel Hill, Chapel Hill, NC, United States. 4. School of Nursing and Midwifery, Trinity College Dublin, the University of Dublin College Green, 24 D'Olier Street, Trinity College Dublin, Dublin 2, Ireland. 5. Department of Diabetes and Endocrinology, Children's Health Ireland, Crumlin, Cooley Road, Dublin 12, Ireland; School of Medicine, Trinity College Dublin, the University of Dublin College Green, Dublin 2, Ireland. 6. Department of Diabetes and Endocrinology, Children's Health Ireland, Crumlin, Cooley Road, Dublin 12, Ireland.
Abstract
BACKGROUND: Research on long-term health conditions indicates that adolescents are not actively involved during their medical visits. Active involvement is essential because this can help adolescents learn how to self-manage their treatment plan. OBJECTIVE: To co-design a video intervention to improve youth question-asking and provider education during paediatric diabetes visits. PATIENT INVOLVEMENT: A participatory-led approach was used to co-design the video, through a combination of interviews/ focus groups and the establishment of a Youth Advisory Group. METHODS: First, focus groups and one-to-one interviews were held with adolescents, parents and healthcare providers. Second, two workshops were held with the Youth Advisory Group, Parent Advisory Group and stakeholders on script design. Finally, an iterative development of the video took place between the research team, videographer, both advisory groups and the steering committee. There were three rounds of feedback before the video was finalised. RESULTS: Adolescents' content preferences included: 1) message of empowerment; 2) managing your diabetes so you can get on with the fun stuff in life; 3) Promoting independence; 4) Reasons for not speaking at clinic visits and reassurance; 5) Becoming comfortable to speak and ask questions at clinic visits; 6) Practical advice on how to ask questions. Formatting preferences included that the video should be short, divided into segments, with adolescents with diabetes acting in it, and speaking directly to the camera. DISCUSSION: Identifying and reflecting adolescents' needs and preferences for engagement with healthcare providers was critical in the development process. Adolescents' participation in the co-design process was pivotal to the acceptability of the intervention for adolescents with diabetes. PRACTICAL VALUE: The intervention may increase adolescents' participation in communication and interactions with healthcare providers, which may help them to be more active in the self-management of their condition.
BACKGROUND: Research on long-term health conditions indicates that adolescents are not actively involved during their medical visits. Active involvement is essential because this can help adolescents learn how to self-manage their treatment plan. OBJECTIVE: To co-design a video intervention to improve youth question-asking and provider education during paediatric diabetes visits. PATIENT INVOLVEMENT: A participatory-led approach was used to co-design the video, through a combination of interviews/ focus groups and the establishment of a Youth Advisory Group. METHODS: First, focus groups and one-to-one interviews were held with adolescents, parents and healthcare providers. Second, two workshops were held with the Youth Advisory Group, Parent Advisory Group and stakeholders on script design. Finally, an iterative development of the video took place between the research team, videographer, both advisory groups and the steering committee. There were three rounds of feedback before the video was finalised. RESULTS: Adolescents' content preferences included: 1) message of empowerment; 2) managing your diabetes so you can get on with the fun stuff in life; 3) Promoting independence; 4) Reasons for not speaking at clinic visits and reassurance; 5) Becoming comfortable to speak and ask questions at clinic visits; 6) Practical advice on how to ask questions. Formatting preferences included that the video should be short, divided into segments, with adolescents with diabetes acting in it, and speaking directly to the camera. DISCUSSION: Identifying and reflecting adolescents' needs and preferences for engagement with healthcare providers was critical in the development process. Adolescents' participation in the co-design process was pivotal to the acceptability of the intervention for adolescents with diabetes. PRACTICAL VALUE: The intervention may increase adolescents' participation in communication and interactions with healthcare providers, which may help them to be more active in the self-management of their condition.