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Children's experiences of a support program during their first year with juvenile idiopathic arthritis : - Insights
Karina Mördrup1,2, Cecilia Bartholdson3,4, Eva Broström3,4
1Department of Women´s and Children´s Health, Karolinska Institutet, Karolinska vägen 37 A 171 64 Solna, Stockholm, Sweden. karina.mordrup@ki.se.
Insights
The juvenile arthritis support program (JASP-1) provided children with a sense of security through integrated medical and psychosocial support. This patient-centered approach improved their experience during the first year of juvenile idiopathic arthritis (JIA).
Area of Science:
- Pediatric Rheumatology
- Child Psychology
- Healthcare Management
Background:
- Children and parents face fear and anxiety when diagnosed with chronic diseases like juvenile idiopathic arthritis (JIA).
- Patient- and family-centered support programs aim to empower children and families navigating JIA.
- Limited research exists on children's experiences within JIA support programs.
Purpose of the Study:
- To describe children's experiences participating in the juvenile arthritis support program (JASP-1) during their first year with JIA.
- To understand how JASP-1 impacts children's sense of security and well-being.
Main Methods:
- Qualitative content analysis of individual semi-structured interviews.
- 14 children aged 12-17 years who participated in JASP-1 were interviewed.
Main Results:
- Children reported gaining a sense of security through treatment, information, and support within JASP-1.
- A balance was achieved in contact, visits, and school presence.
- Three distinct categories emerged from the children's experiences.
Conclusions:
- JASP-1 effectively integrated medical and psychosocial support, providing children with JIA a comprehensive sense of security.
- Patient- and family-centered programs like JASP-1 can enhance and standardize care for newly diagnosed children.
- Such programs hold potential for improving healthcare outcomes and equity for children with JIA.
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.
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