The Experience of Parenting in the Context of Juvenile Chronic Arthritis

Abstract

Caring for a child with juvenile chronic arthritis (JCA) places considerable demands upon parents. The purpose of this study was to gain greater insight and understanding into the experience of parents in terms of the stressors encountered and the resultant impact on parental well-being. Reflecting this aim, the study utilized a qualitative methodology, focused group technique. Parents expressed the impact of JCA in terms of guilt, anxiety, anger, frustration, helplessness, powerlessness and isolation. Lack of information and inadequate support hindered their efforts to cope with their child's pain and disability. Social barriers, particularly in the school environment, emerged as significant sources of stress. Parents suggested that the burden of care could be eased by greater provision of information, increased support through self-help groups, more opportunities for discussion with health professionals, and education at individual and societal levels.