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Involving Children with Juvenile Idiopathic Arthritis in Health-Related Research – Why and How?
Gilljam, Britt-Mari, Arvidsson, Susann, Nygren, Jens, Svedberg, Petra
Artikel i tidskrift (Refereegranskat)
Background: Children with severe Juvenile idiopathic arthritis (JIA) are exposed to care situations and harsh treatments such as intra-articular corticosteroid injections (1). In order for these children to feel confidence, it is important they understand and feel they have control over the situation. To support the wellbeing of these children and their involvement in care, it is important to investigate their views of the care process and their everyday life (2).
Objectives: The purpose of this study is to describe our experiences of using different activities and techniques during interviews with children with JIA.
Methods: Children (n=23) from two rheumatic pediatric clinics in Sweden, age 8 - 17, diagnosed with JIA since at least two years were interviewed individually or in focus groups. All interviews focused on experiences and preferences of participating in care situations. Among the younger children, age 8 - 12, we used activities such as sentence completion, to express three wishes, draw and tell, and role-play with Barbie dolls. Among the older ones, age 13 – 17, we used sentence completion, to express three wishes and post-IT tabs for brainstorming and subsequent discussion. During all interviews we used open-ended questions.
Results: Sentence completion and three wishes were two weak techniques for most of the children regardless of age. The younger children often responded to these techniques with silence or responses like “I don't know”. The older children responded with intense reflection and thinking, and predominately came up with one wish only. Techniques that were powerful in activating discussions were draw and tell and role-play with Barbie dolls for the younger children. Using Post-IT tabs and discussions was a good starter for discussions for the older children in focus groups.
Conclusions: There is reason to reflect on what techniques researchers use when interviewing children, as the prospects of capturing children's perspectives in research is largely dependent on the researcher's ability to engage children in the interview situation. Different interview methods should be used depending on the age of the informants, the purpose of the investigation, and the capabilities, such as the health status, of the child. In this study, we experienced that the participants ability to express their experiences and preferences can be facilitated with practical techniques, like drawing and role-play with Barbie dolls for younger children and Post-IT tabs for children in older age groups.
Bertilsson L. Andersson-Gäre B. Fasth A. Forsblad-d'Elia H. A 5-year prospective population-based study of juvenile chronic arthritis: onset, disease process, and outcome. Scandinavian journal of rheumatology 2012; 41(5): 379-382.
Coyne I. Hayes E. Gallagher P. Regan G. Giving children a voice: investigation of children's experiences of participation in consultation and decision-making in Irish hospitals. Office of the Minister for Children 2006; 3576.
Acknowledgements: Thanks to: The Swedish Rheumatic Foundation, Stig Thunes Foundation and Norrbacka Eugenia Foundation.
Disclosure of Interest: None declared
Nyckelord: Participation; child; rheumatology