Amplified ambivalence: Having a sibling with juvenile idiopathic arthritis

Abstract

Despite increased awareness of family responses to chronic illness and disability, there is still a need to understand experiences of well siblings. We begin to address this issue by asking, ‘What is it like to have a sibling with juvenile idiopathic arthritis?’ (JIA). Eight families with an adolescent diagnosed with JIA participated. Four members of each family, including one healthy sibling, were interviewed and transcripts analyzed using grounded theory. Analysis suggests healthy siblings see their family as different to ‘normal’ families, forfeit time with peers, share vicariously adverse experiences of their ill sibling, and feel inadequately informed. Such experiences amplify the ambivalent nature of sibling relationships and are possibly felt most strongly during late childhood and early adolescence. Support from extended family can reduce these negative experiences and facilitate social and emotional adjustment which also occurs over time as the children mature. These findings have implications for healthcare professionals and voluntary organizations.

Keywords:

• Siblings
• juvenile idiopathic arthritis
• family
• childhood disability
• chronic illness
• qualitative research