The Bonding Force of Juvenile Idiopathic Arthritis-Families Transforming through JIA: A Qualitative Research Study.

Objectives: Central aim of this research was to investigate the experience of parents with a child diagnosed with Juvenile Idiopathic Arthritis (JIA) and the interplay of JIA, family dynamics, everyday life, and the developing coping mechanisms to deal with potential life changes.

Methods: A qualitative psychology-based research methodology was applied. Data were collected through online in-depth semi-structured interviews with parents of one offspring with JIA. The anonymised interview transcripts were analysed following the principles of interpretative phenomenological analysis. Nine parents (M:F, 3:6) aged 39-51 years (mean=47), were included in the study with their children having the diagnosis of different JIA subtypes.

Results: JIA appears to have led our sample to the creation of strong bonding between parents, siblings, and the patient (9/9). Additionally, JIA altered the family members' daily life by shifting their focus on the disease management (9/9). The upcoming stress led parents to develop a variety of coping mechanisms (9/9) with 3/9 parents sought reliable information from health professionals, 7/9 looked for psychological support and 6/9 shared their experience with other JIA affected families. Impressively, 5/9 reported that JIA eventually has a positive impact on their family, with JIA minors presented as disciplined and empathetic fighters (4/9).

Conclusion: JIA was found to be a great challenge from the parents' perspective, especially during the post-diagnosis period. However, most of the interviewed family members gradually accommodated to JIA and acknowledged even its beneficial contribution.