Objective Children and adolescents with a chronic illness (CI) tend to demonstrate diminished physical and social functioning, which contribute to school attendance issues. We investigated the role of social and physical functioning in reducing school absenteeism in children participating in Mastering Each New Direction (MEND), a family-based psychosocial intervention for youths with CI. Methods Forty-eight children and adolescents with a CI (70.8% female, Mage = 14.922, SD = 2.143) and their parent(s) completed a health-related quality of life (HRQOL) measure pre- and postintervention. Using multiple mediation, we examined whether parent- and child-rated physical and social HRQOL mediated the relationship between school attendance before and after MEND. Once the mediational model was not supported, we investigated whether HRQOL moderated the relationship between missed school days pre- and postintervention. Results Neither physical nor social functioning mediated or moderated the relationship between missed school days pre- and postintervention. Instead, higher parent-rated physical functioning directly predicted decreased number of missed school days, while lower parent-rated social and child-rated physical functioning predicted increased missed school days. Conclusions Parent-perceived HRQOL may have a direct effect on health-related behaviors such as school attendance. Future research should determine whether gains in parent-rated QOL are maintained in the long term and whether these continue to impact markers of functional well-being.
Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness.
A B S T R A C T OBJECTIVE:To test the effect of 1 high-intensity, and 1 reduced-intensity, educational intervention designed to improve health care provider attitudes toward youth with sickle cell disease (SCD). METHODS:We exposed a regional sample of pediatric health care providers to a 2.5-day highintensity educational and experiential intervention using videos about the SCD patient experience. Additionally, we traveled to a different set of regional health care institutions and offered pediatric providers a reduced-intensity intervention, consisting of a 90-minute lunchtime in-service centered on our same set of videos about the patient's experience. We assessed the impact of both interventions by taking pre/post measurements of the negative and positive attitudes expressed by participating providers toward patients with SCD. RESULTS:Both interventions tested elicited improvements in the SCD attitudes expressed by the pediatric providers as suggested through a reduction in measured negative attitude scores (20.0 vs 12.1, P , .001), and an improvement in positive attitude scores (67.1 vs 72.2, P , .001). Further testing suggested that the high-intensity intervention elicited a stronger effect than the reducedintensity intervention across multiple attitudinal domains. CONCLUSIONS:Video-based interventions can be used to improve the attitudes of pediatric providers toward patients with SCD. The availability of interventions of varying intensities provides greater flexibility in designing efforts to advance the quality of SCD care through the improvement of provider attitudes.
The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.
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