‘Struggling to participate in everyday life’: emerging adults’ experiences of living with long-term health challenges

Abstract

Abstract Aim To gain a deeper understanding of the experiences of participation in the everyday life of emerging adults living with long-term health challenges and how this influences their own quality of life. Methods Using an explorative study design, data were collected through in-depth interviews with a sample of 12 young people aged 18–29 years living with long-term health challenges in Norway. Findings The analysis identified one overarching theme of struggling to participate in everyday life, and four subthemes: the notion of being independent but also dependent, experiencing mismatch between needs and support, experiencing deprivation of spontaneity and feeling uncertain about the future. The emerging adults experienced difficulties with participation in key areas of life such as education, employment and leisure activities. Associated symptoms of their diagnosis, limited physical abilities and lack of sufficient support made it hard to participate in everyday life the way they aspired to. Conclusion The challenges of living with a long-term health challenge as an emerging adult contributed to limitations in participation in different areas of life that was perceived as important for their quality of life.