Views from the Inside, Part 1: Routes to Diagnosis — Families' Experience of Living with a Child with Arthritis

Abstract

This is the first of a trilogy of articles that presents the experiences and perspectives of 46 families about what it is like to live with and care for a child with juvenile idiopathic arthritis (JIA). An independent professional recruited the children from a random sample of families who attended consecutive outpatient appointments at the juvenile arthritis clinic and who fulfilled the inclusion criteria. Qualitative and quantitative data from self-completion questionnaires, transcripts from semi-structured interviews with family members in their homes, family-filmed video diaries, and diaries written by siblings and children with arthritis were analysed. These different types of data were gathered over 18 months in order to collect information about the fluctuating nature of this disease and the impact of this changeability on family members. Part 1 concentrates on a brief presentation of relevant literature, presents a simplified map of the findings and introduces the families' early experiences of seeking and coping with the diagnosis of JIA. The article explores the myth that arthritis only affects elderly and infirm people, explains the mirage effect and discusses the significance of different routes to diagnosis. The majority of the families felt that these early events had a significant, sometimes considerable, impact upon how they coped later, including how they related subsequently to health care professionals and engaged with continuing prescribed health care programmes. The findings report the families' experiences as recipients of health care by many different professionals and relate to their recollection and interpretation of events. Research into the professionals' perspectives would be illuminating but did not fall within the scope of the present study. The experiences of families of children with arthritis are shared by families of children with other chronic conditions and by other carers and service users.