Children's experiences of a support program during their first year with juvenile idiopathic arthritis : - Insights from qualitative interviews.

Abstract

Background: Research reveals that both children and parents often experience fear and anxiety upon being diagnosed with a chronic disease like juvenile idiopathic arthritis. A one-year juvenile arthritis support program (JASP-1) has been developed to offer patient- and family-centered support and education to empower children and their parents in their new situation. However, there is limited knowledge about children's experiences of participating in such support programs. Therefore, this study aimed to describe children's experiences of participating in JASP-1 during their first year with juvenile idiopathic arthritis.

Methods: Data were collected using individual semi-structured interviews with children who had participated in JASP-1. The interviews were transcribed and analyzed using qualitative content analysis.

Results: Fourteen children between 12 and 17 years of age, with a mean age of 14 years, were interviewed. Three distinct categories were identified. The children reported that their involvement in JASP-1 provided them with a sense of security through treatment, a sense of security through information and support; and that contact, visits, and school presence were in balance.

Conclusion: The results showed that JASP-1 successfully integrated contact through phone calls, visits, and medical and psychosocial support in a satisfactory and accessible way for children recently diagnosed with JIA. This provided them with a comprehensive sense of security. Our findings indicate that patient- and family-centered programs like JASP-1 not only have the potential to enhance and standardize care for children newly diagnosed with JIA but also to contribute to improved and equitable healthcare outcomes in the future.