Juvenile Idiopathic Arthritis and Quality of Life Issues: The Perspectives of Parents and Clinicians

Background: The aim of this study was to explore the perspectives of parents and clinicians concerning the quality of life issues of young people with the chronic disease of juvenile idiopathic arthritis (JIA). Diagnosed... [ view full abstract ]

Background:
The aim of this study was to explore the perspectives of parents and clinicians concerning the quality of life issues of young people with the chronic disease of juvenile idiopathic arthritis (JIA). Diagnosed during childhood before the age of 16, this disease has an incidence of 10-20/100,000. The disease is self-limiting for some but for others it will endure into adulthood. JIA is characterized by persistent synovial inflammation which can cause functional impairment, pain, and activity limitation; all of which may affect quality of life. Treatment modalities are not curative and aim to control the inflammatory process.

Methodology:
The theoretical frameworks to support this study were Tannahill’s model of health promotion and the Innovative Chronic Care framework.
Using purposive sampling and semi-structured interviews 14 Parents, 2 Consultant Rheumatologists and 2 Rheumatology Specialist Nurses were interviewed.


Results:
Parents indicated concerns related to some medications.

In general terms, parents benchmarked their issues into two areas:
before a confirmed diagnosis of JIA and after a confirmed diagnosis of their child having JIA.

Parents and clinicians were of the view that service provision organisation
could be improved including transition to adult services.

Parents and clinicians acknowledged the complex health issues that many
young people with JIA had and the importance of family and education in
adapting to the illness.

Conclusions:
Social support was found to be a protective factor in buffering the impact of JIA. A good team that included the young person’s family, friends, healthcare providers and educators to support them was a strong factor in adapting to and coping with the impact of JIA.
Person-centred care from the diagnosis of JIA is needed to meet the needs of young people with JIA across their lifespan, to optimize their life opportunities and quality of life.