Struggle and adjustment to an insecure everyday life and an unpredictable life course. Living with juvenile idiopathic arthritis from childhood to adult life - an interview study

Abstract

Purpose: . To obtain a deeper understanding of the meaning of living with juvenile idiopathic arthritis (JIA) through childhood and adolescence into adult life as described by young adults with JIA themselves.

Method: Based on a qualitative study design, 15 young adults were interviewed individually. The data were analysed using a qualitative content analysis approach.

Results: Living with JIA involves struggle and adjustment to an insecure everyday life and an unpredictable life course. The informants' experiences emerged as dichotomies on a continuum describing the dynamics in life experiences individually and over time. The categories include bodily experiences of limitations or freedom, being acknowledged or set aside in interpersonal relationships, and intrapersonal experiences of insecurity or confidence. The findings indicate a change to greater acceptance and adjustment to the disease over time.

Conclusion: The impact of JIA on life in a time of transition from childhood to adult life involves complex challenges on coping strategies and adjustment processes. Understanding this complexity is urgent for health professionals to contribute to both normal developmental task achievements and overall well-being for young people with JIA. Further investigations should focus on coping and adjustment processes when facing disease fluctuations and unpredictability in a life-span perspective.