From ‘neurotic’ to ‘managing’ mother: The ‘medical career’ experienced by mothers of a child diagnosed with Juvenile Idiopathic Arthritis

Objective: Despite increased research into how caring for a child diagnosed with juvenile idiopathic arthritis (JIA) affects mothers, more needs to be known about ways in which such experiences transform their lives. Insight into the experiences of such mothers was sought through analysis of interviews with eight mothers and one father caring for a child with JIA.

Design: The study is situated within a larger project involving families with a child with JIA. A social constructionist approach was adopted and grounded theory including a ‘negative case,’ guided gathering and analysing data. Individual, semi‐structured interviews were conducted based on the research question: ‘What is it like to be the mother of a child with juvenile idiopathic arthritis?’

Results: Findings suggest that mothers find difficulty living up to the ‘ideal mother’ expected within Western society when forced to provide competing demands of age‐related, yet illness‐relevant care. The unpredictable nature of JIA means mothers face a lack of understanding from professionals so become hyper‐vigilant, ‘battling’ on behalf of their ill child. A self‐perpetuating loop develops if this is misperceived as being overprotective, leaving mothers vulnerable to being judged ‘neurotic’. However, with experience, often at an emotional cost, such mothers’ confidence in managing the competing demands of caring for their ill child increases such they can navigate a positive journey from ‘neurotic’ to ‘managing’ mother.

Conclusions: Understanding this process could help health care professionals reduce stressful experiences faced by mothers when caring for a chronically ill child.