Facilitating adaptation to juvenile rheumatic disease with family retreats
K J Hagglund1, T A Pressly, D L Clay
1Dept of Physical Medicine and Rehabilitation, University of Missouri at Columbia, USA.
Insights
Family retreats improve coping for children with juvenile rheumatic disease (JRD) and their families. These interventions enhance communication, knowledge, and adaptation, offering significant benefits for JRD patient and caregiver well-being.
Area of Science:
- Pediatric Rheumatology
- Family Psychology
- Chronic Disease Management
Background:
- Juvenile rheumatic disease (JRD) presents significant challenges for children and families, impacting emotional, behavioral, and academic well-being.
- Risk factors for poor outcomes include compromised family coping, poor treatment adherence, and unmet academic needs.
- Effective family support strategies are crucial for mitigating the adverse effects of JRD.
Purpose of the Study:
- To assess the impact of a family retreat intervention on the coping mechanisms of families affected by JRD.
- To identify specific areas of improvement in family functioning and adaptation post-retreat.
Main Methods:
- An initial assessment of family coping was conducted using a questionnaire administered at a family retreat.
- The same coping questionnaire was administered again to 27 families 3 months after the retreat.
- Data analysis focused on changes in reported coping abilities and disease-related knowledge.
Main Results:
- Families reported significant improvements in communication regarding JRD.
- Enhanced knowledge of arthritis and greater certainty regarding the disease course were observed.
- Participants reported an improved ability to overcome difficulties associated with JRD.
Conclusions:
- Family retreats show potential as an effective intervention for enhancing family coping with JRD.
- These retreats can significantly improve adaptation for both children with JRD and their caregivers.
- Targeted family support can positively influence the long-term outcomes for JRD patients and their families.
Abstract:
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.
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