Views from the Inside, Part 2: What the Children with Arthritis Said, and the Experiences of Siblings, Mothers, Fathers and Grandparents

Abstract

This second article in a series of three presents some of the findings from a study involving 46 families of children with juvenile idiopathic arthritis (JIA). The aim of the study overall was to describe and explore what life was like for families that included a child with JIA in the United Kingdom today. The study deployed a grounded theory approach, collecting different sorts of data over time in order to build up a picture of how these families lived with such a changeable long-term condition. In the first stage, data were collected using a self-completion questionnaire from 46 families, whose children attended a regular outpatient appointment at the paediatric rheumatology clinic. These data formed the contextual landscape to further in-depth data collected in stage two, from a cohesive group of nine families of girls selected from those who had already taken part in stage one. In stage two, the families were interviewed in their own homes, the children wrote diaries and the families recorded a video diary. All the data related to the respondents' recollections of events and their thoughts, feelings and perspectives: they formed the insiders' view of the experiences. This article presents the findings about the common themes that emerged from the data about children with JIA and their siblings, mothers, fathers and grandparents. It also discusses the key elements of the families' experiences and concludes with recommendations for health care practitioners. A distillation of the views of the majority of parents is provided in these two statements by different mothers: ‘Immobility and pain makes the joy of play, just armchair viewing’ and ‘It's a stolen childhood, really, isn't it?’