Oscillating between hope and despair — a qualitative study


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Abstract

ObjectiveThe aim of this qualitative study was to elucidate the life situation and psychosocial processes of living with chronic pain in children suffering from juvenile chronic arthritis (JCA).MethodsTaped open qualitative interviews with 22 children (aged 6–17 years) were transcribed verbatim and analysed using the comparative method for grounded theory.ResultsA core category, labelled oscillating between hope and despair, was identified and related to four additional categories labelled disturbed order, dependency, ambivalence and uncertainty about the future. There were relationships between the children's subjective experience of pain and their experiences of disturbed order in daily life, dependency on treatment, health care and significant others, ambivalence related to environmental reactions and uncertainty about the future. Chronic pain and disease control the children's lives and lead to restricted participation in social life.ConclusionsChronic pain is a substantial problem for children with JCA, which must be considered in health care. The pain affected and disturbed the children's ordinary way of life. It blocked a number of goals. Psychological and physiological processes interact in the phenomenological experience of pain, and the response of the environment elicits, maintains or decreases the experience of pain. Hopefully, the findings contribute to a deeper understanding of the life situation of children suffering from JCA and can be of importance in developing rehabilitation programmes for these children.

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