Rheumatology Advance Access originally published online on April 13, 2006
Rheumatology 2006 45(11):1399-1403; doi:10.1093/rheumatology/kel122
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Illness trajectories in Mexican children with juvenile idiopathic arthritis and their parents
1Rheumatology Department, Hospital General de México and Universidad Nacional Autónoma de México, Faculty of Medicine, 2Epidemiology and Social Research Division, Instituto Nacional de Psiquiatría Ramón de la Fuente Muñiz and Universidad Nacional Autónoma de México, Faculty of Medicine, 3Department of Adolescence Studies, Instituto Mexicano del Seguro Social and 4Pedriatic Unit, Hospital General de México, México.
Correspondence to: R Burgos-Vargas, MD, Rheumatology Department, Hospital General de México Dr Balmis 148, Colonia Doctores 06726 México City, México. E-mail: burgosv{at}attglobal.net; burgosv{at}prodigy.net.mx
Background. We hypothesize that the qualitative approach of socio-cultural aspects in children with juvenile idiopathic arthritis (JIA) and their parents would improve the understanding of their illness.
Objective. To explain the phenomenon of experiencing JIA within a specific cultural context.
Methods. The theoretical position of this research was based on the substantive theories of suffering, explanatory models and illness experience. Its design was that of qualitative field, and its analysis followed the interpretative grounded theory methodology. Data were collected by in-depth interviews and notes; tape recordings were transcribed verbatim, read and imported into the ATLAS/ti® 4.2 software. Data conceptualization, categorization and interpretation were based on the constant comparison method.
Results. A total of 16 adults and six children from 10 families were interviewed. ‘Pilgrimage’ (metaphorically referred by some of the parents) was a major code in the study that reflected the religious reference to the trajectory of pain, faith and hope. For children, pilgrimage was conformed by immediate concepts; for parents, by historical and immediate experiences influenced by JIA subtype. Pilgrimage was consistent with the model of the illness trajectory theory, which conceptually relates to the idea that the course of chronic diseases is variable and modifiable throughout time.
Conclusion. The qualitative approach of JIA provides wide and deep information on the perception that children and parents have about the disease. The illness trajectory theory corresponds to pilgrimage, the theoretical model for JIA in this study.
KEY WORDS: Juvenile arthritis, Qualitative research, Illness trajectory, Quality of life, Narratives, Anthropology