Understanding wellbeing from the perspective of youth with chronic conditions: A group concept mapping approach

Abstract

Promoting wellbeing for youth is a global health priority and young people with chronic conditions demonstrate disproportionately low wellbeing compared to their peers. However, wellbeing is variably defined, and little is understood as to what wellbeing means for this population. The aim of this study was to develop a conceptualisation of wellbeing that is rooted in the perspectives of young people with chronic conditions. Group concept mapping, a structured, mixed method, and participatory based technique, was conducted with 11 participants aged 16-25 with various health conditions. Youth advisors were involved from the initial planning of the research to the final interpretation of the data. In a series of focus groups, participants generated statements that encapsulated their sense of wellbeing. From the generated ideas, a refined list of 62 statements was finalised in consultation with a youth advisory group. Participants then individually sorted the 62 statements into groups that made sense to them; individual data were combined, then analysed using multidimensional scaling to create a visual map of the ideas. Hierarchical cluster analysis was used to group the mapped ideas into clusters, resulting in seven ‘domains’ of wellbeing: (1) ‘Embodying authentic self’; (2) ‘Being a young person’; (3) ‘Abilities and capacities’; (4) ‘Self-understanding and nurturing’; (5) ‘Hopeful future outlook’; (6) ‘Supportive systems and communities’; and (7) ‘Emotional support and validation’. These findings demonstrate the importance of considering inter-personal, intra-personal, and systemic factors in understanding wellbeing for youth with chronic conditions. The high level of participation throughout the research process allowed us to develop a concept of wellbeing that is nuanced and highly specific to this unique group. Implications for measurement, intervention and healthcare delivery for youth with chronic conditions are discussed.