Facilitating adaptation to juvenile rheumatic disease with family retreats.

Children with juvenile rheumatic disease (JRD) and their families face numerous challenges associated with disease symptomatology and treatment. Although many families cope well with these challenges, many are at risk for poor outcome. Children with JRD may have emotional, behavioral, and academic difficulties. Their parents also may have emotional distress, as well as marital conflict and reduced social activity. Identified risk factors for poor outcome include compromised family coping, poor adherence to treatment, and unmet academic needs. These risk factors are reviewed and an initial assessment of the effect of a family retreat on family coping is described. Twenty-seven families completed a coping questionnaire first at a family retreat and again 3 months later. Improvements were observed in reported ability to communicate about JRD, knowledge of arthritis, certainty of disease course, and ability to overcome difficulties related to JRD. Family retreats hold the potential to significantly enhance children's and caregivers' adaptation to JRD.