Children's experiences of living with juvenile idiopathic arthritis: Thematic synthesis of qualitative studies

Abstract

Objective:

To describe the experiences and perspectives of children and adolescents living with juvenile idiopathic arthritis.

Methods:

We conducted a systematic review of qualitative studies that explored the experiences of children living with juvenile idiopathic arthritis. We searched electronic databases (to July Week 2, 2011) and reference lists of relevant articles.

Results:

Twenty-seven studies which reported the experiences of more than 542 participants were included. Six major themes were identified: aversion to being different (unrelenting and unpredictable pain, disablement, internal disfigurement, differential treatment, forced dependency on others); striving for normality (preserving social identity, resourcefulness, sense of community, focus on remission, mastery over body and pain); stigma and misunderstanding (trivialisation of disease, invisible suffering, discrimination); suspension in uncertainty (control versus powerlessness, hope versus disappointment); managing treatment (benefits of taking medicines, respect and involvement in healthcare, motivation for physical therapy); and desire for knowledge (medical treatment and advances, lifestyle management).

Conclusion:

Juvenile idiopathic arthritis disrupts the children's sense of normality and impairs their capacity for social participation. They have a sense of being misunderstood and stigmatised, and feel perpetually caught between having hope and control over their bodies, and overwhelming pain and despair. To increase their confidence, ability to manage their pain, and resourcefulness for self-management, children need ongoing information about treatments and lifestyle management, strong social support, community advocacy, and active involvement in their own health decision making. © 2012 by the American College of Rheumatology