Indexed on: 10 Mar '20Published on: 10 Mar '20Published in: British Journal of Health Psychology
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. Statement of contribution What is already known on this subject? Mothers of chronically ill children are often diagnosed with anxiety and depression. Such mothers will have taken over managing their child's condition, and this can include negative experiences within the health care system. Qualitative methods enable deeper understanding of the experiences of mothers of chronically ill children. What does the study add? Potentially gendered position of mothers of children with chronic conditions. Taken for granted assumptions implicitly underpin interactions between mothers and some professionals. Greater partnership between mothers and professionals ultimately improves the care of the ill child. © 2020 The British Psychological Society.