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.