Self-management needs of children with JIA in Ireland: a qualitative survey of families
Sammanfattning
Aim: To explore the self-management needs and coping activities of children with JIA and their
parents. Families and children with JIA experience many different challenges with the diagnosis. One
of the long-term therapy aims is to assist individuals to develop self-management and coping skills.
Methods: Twenty-six face-to-face interviews were conducted at an outpatient tertiary hospital in
Ireland using a semi-structured format.
Results: Children and families were happy with sources of information about JIA and expressed confidence
in the information provided. Parent of younger children felt that information about tricks or tips
that other people used could be provided in anticipation of changing medications or flare-ups. Older
children expressed a desire to be treated normally and that the means of expressing or illustrating the
variable nature of the disease was needed to people outside of the immediate family, i.e. teachers, as
this would assist with their coping skills.
Discussion: All children refer to the impact of JIA in terms of loss of function and the effect on their
role within their society. Families trusted information from medical sources, but there is a need for
improving knowledge and skills for unexpected events and changing the perception of exercise and
physical activity.