The life stage of adolescence and young adulthood is typically characterised by increasing independence and autonomy, setting educational and vocational goals, and a focus on relationships outside immediate family. However, these trajectories may be disrupted for the estimated 20 per cent of young people with long term physical health conditions (LTHCs) such as epilepsy, type 1 diabetes, inflammatory bowel disease (IBD) and many more. Despite the different characteristics of these LTHCs, research exploring their psychosocial impacts demonstrates similarities, with young people experiencing reduced academic attainment, worse employment prospects and poorer psychological outcomes compared to their healthy peers. However, work incorporating the narratives of adolescents and young adults themselves regarding their experience with a LTHC remains under-represented in the literature.

The aim of the present study was to explore the perceptions of young people aged 16-25 regarding the impacts of, and support for, their physical LTHC. A convergent mixed-methods design was adopted, with self-report data collected via an anonymous online survey. A final sample of 636 participants representing a range of health conditions and education and employment circumstances related their experience of impacts on education, employment, and social participation. They also completed measures of wellbeing and illness beliefs. To conceptualise perceived support, constructs from basic psychological needs theory (Ryan & Deci, 2000) were used to explore and measure support for autonomy, relatedness and competence (ARC) across external networks including education staff and healthcare professionals.

Qualitative data were analysed using phenomenography, resulting in a nested outcome space across three levels – individual, network and societal, representing the different ways young people perceived the impacts of, and support for, their LTHC. Findings suggested that the typical activities and trajectories of adolescence and young adulthood such as education, employment and social participation are disrupted. This was perceived to impact wellbeing and psychological health and created a mismatch between what participants expected of adolescent and young adult life, and the reality of their experience. This resulted in perceptions of undesirable difference from peers, along with low personal autonomy and competence. Perceived support from networks including family, friends, education staff and healthcare professionals was seen as either improving or worsening the experience of a LTHC. Despite many common perceptions, findings were not universal, with differences according to type of health condition and employment status. Insights from the phenomenography were supported by regression analyses indicating that perceived helplessness, acceptance and support for competence were unique predictors of wellbeing for this group. In addition, the external networks of home and friends remained unique significant predictors of wellbeing for young people with LTHCs when controlling for education and participation impacts, and illness beliefs.

This study has contributed to research focused on the lived experience of young people with physical LTHCs, increasing knowledge of impacts across multiple life-contexts and highlighting the importance of assessing and supporting wellbeing in a developmentally unique population. The study has also added to the self-determination theory literature by demonstrating that perceived support from external networks for basic psychological needs is associated with both wellbeing and illness beliefs in young people with LTHCs.

The findings have implications for education and health practice. This includes additional training for teachers regarding the invisible impacts of a LTHC, and provision of designated tutorial support to ensure young people’s competence needs are met. Greater focus on psychological wellbeing as part of routine LTHC care, along with improved HCP support for young people’s autonomy, would also help this at-risk population navigate the typical activities and trajectories of young adulthood, alongside managing their physical LTHC.