Let’s talk about sex ... and gender!: Towards gender-sensitive care for psychosocial problems of young people with type 1 diabetes

Awareness for diversity, in particular related to sex and gender, in health care is increasing. In diabetes care, recommendations are made for a more personalized approach, yet sex and gender and across their intersections with other diversity aspects have been mostly overlooked. Young people (10-22 years) with T1D in particular may have much to benefit from a more diversity-sensitive approach, given their specific developmental challenges and increased risk for suboptimal medical and mental health outcomes. Theory and literature on gender-sensitive care and psychosocial development of young people with T1D highlight the relevance to deepen and transcend our knowledge about diversity (in particular sex and gender), and to establish how relevant gender differences can be addressed. In order to make this as meaningful as possible for all those involved, the experience and knowledge of young people need to be placed next to insights from other stakeholders, including parents and health care providers. Objective: To (a) establish a prioritized joint research agenda around diversity, focusing on sex and gender, meaningful to young people with T1D (age 10-22 years) and shared with other stakeholders, in psychosocial development and diabetes management, and (b) better understand the complexity of addressing sex and gender in line with gender-sensitive care, by gaining more insight in perceptions about diversity and life with diabetes (attitudes and values) and in the prevalence and course of psychological problems (knowledge), and by developing materials to stimulate gender-sensitivity concordant with experiences (skills). Special attention will be given to the role of healthcare providers and the wish of the subsidizing parties to set up recommendations for clinical practice. Methods: The overarching participatory approach to better understand the complexity of addressing gender and sex in young people with diabetes will nest 7 sub studies. This includes a stakeholder and participation scan, secondary quantitative analyses, qualitative blog/vlog analysis, a joint problem analysis, semi-structured interviews, co-creative work-sessions, and dialogue with other stakeholders. Secondary analyses of quantitative data will increase knowledge on the magnitude and course of the psychosocial problems and unravel networks of symptoms by state-of-the-art analysis to better tailor treatment. Qualitative analyses will capture the perspective of young people on living with T1D and insight in which strategies stimulate gender-sensitive care by the participatory approach and by taking into account naturalistic data (blogs/vlogs). Throughout the project, maximal collaboration is sought with young people in order to do justice to their realities and needs, capitalize on their knowledge, and tailor strategies for change accordingly. Four young people (two females, two males) are part of the project team. At the start of the project, 6-8 additional young people will be scouted to form the “core” research team. For the interviews and working sessions, we will recruit other young people aged 10-17 years; those aged 18-22 years will later be consulted on how to tailor outcomes to their specific wishes and needs. Throughout the project, all stakeholders will be involved in an ongoing dialogue on generating and interpreting new knowledge. Results: The project will result in a prioritized joint research agenda around diversity, with a focus on sex and gender, that is meaningful to young people and shared with the other stakeholders involved; knowledge on the role of sex and gender in the prevalence and course of psychological problems; guidance for healthcare professionals about a gender-sensitive approach, meeting the wishes and needs of young people; and a more durable introduction of gender-sensitive and participative methods to the diabetes field, including guideline development. The most suited format and channel for knowledge transfer will be determined in dialogue and collaboration with young people as well as stakeholder spokespersons. These may range from an infographic, set of recommendations, Facebook Live video or discussion tool to a quiz or train-the trainer workshop. To conclude, young people and their families in this transitional phase of life need to find a new balance, as diabetes management evolves from parent-driven to youth-directed diabetes care. Personalized care is the corner stone to incorporate the complex interplay of the intrapersonal and interpersonal dynamics in treatment of young people with T1D. Further insight in the role of sex and gender and across intersections in the psychosocial development of these young people with T1D should contribute to more tailor-made, gender-sensitive health care.