Concealed concern: fathers' experiences of having a child with juvenile idiopathic arthritis

Area of Science:

• Pediatric Rheumatology
• Family Health
• Childhood Chronic Illness

Background:

• Limited research exists on the paternal experience of childhood chronic illness.
• Juvenile Idiopathic Arthritis (JIA) presents unique challenges for affected families.
• Understanding the father's perspective is crucial for comprehensive family support.

Purpose of the Study:

• To explore the lived experience of fathers of children diagnosed with Juvenile Idiopathic Arthritis (JIA).
• To identify the challenges, coping mechanisms, and adjustment processes of these fathers.
• To provide insights for healthcare professionals and support organizations.

Main Methods:

• Qualitative study employing grounded theory.
• Interviews conducted with seven fathers from eight families with an adolescent diagnosed with JIA.
• Analysis of interview transcripts to identify key themes and experiences.

Main Results:

• Fathers reported significant losses, intensified by social comparison with fathers of healthy children.
• Communication with the ill child was constrained by reduced opportunities for shared activities.
• Fathers utilized denial and distraction to conceal distress, with social support aiding adjustment.
• Acceptance grew over time as JIA care integrated into family life and child maturity increased.

Conclusions:

• Fathers of children with JIA experience profound emotional and social challenges.
• Effective support strategies should acknowledge these unique paternal experiences.
• Healthcare providers and voluntary organizations can better assist families by understanding the father's role and needs.