Just getting on with it: family experience of juvenile idiopathic arthritis

Introduction: A chronic condition does not just affect the individual diagnosed, but also their families. The process of adaptation, following the onset of symptoms, can be complex requiring flexibility from the family. This may be especially pertinent with Juvenile Idiopathic Arthritis (JIA) which is characterised by unpredictable flare-ups and an uncertain disease trajectory. Families negotiating JIA may be at an increased vulnerability of distress as a result of additional demands placed upon their resources. This may have implications for health services. It is therefore important to understand family experiences of living with a chronic condition in order to support families throughout the adaptation process. To date, the majority of studies have investigated individual family members’ reports in order to assess family functioning, but these investigations have neglected to study the family as a unit.
Method: This study utilised a multiple-perspective case study design in order to explore family experiences of JIA. Two families were recruited from a paediatric rheumatology service in Leeds. Family group interviews were conducted and five of the seven participating family members completed follow-up individual interviews, which used a semi-structured interviewing format. Interviews were transcribed and an interpretative phenomenological approach was used to analyse each case study. A synthesis of the results was also conducted.
Results: Four master themes were identified from the first family interviews. These were: negotiating power, not letting go: managing transitions, when the invisible becomes visible and just getting on with it. Four master themes were also identified from the second family: a positive outlook, being ‘normal’, power and empowerment and medications: friend or foe. Analysis also focused upon how both families negotiated their understandings of JIA. Five themes were identified following a synthesis of the case study data. These were: Just getting on with it and maintaining a sense of normality, battling, fighting and the negotiation of power, transitioning, JIA as a hidden condition and negotiating understandings.
Discussion: The themes relating most significantly to the research aims: just getting on with it and maintaining a sense of normality, battling, fighting and the negotiation of power and negotiating understandings, from the synthesised data were discussed within the context of the existing chronic health conditions and family communication literature. The study’s methodological strengths and limitations were also presented following the discussion of the themes. Clinical implications relating to families experiencing JIA and services providing care to these families was discussed throughout the discussion chapter, and finally, recommendations for further research were outlined.