Mary R Robinson

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OBJECTIVE To evaluate perceived benefits and barriers to pediatric clinical trials participation to improve decision-making and enhance recruitment and retention among minority youth with chronic health conditions (sickle cell disease, asthma) and their caregivers. METHODS A questionnaire was developed based on the social ecological model using input from(More)
The objective of this study was to examine resilience among adolescents with sickle cell disease (SCD), focusing on the interaction of health-related quality of life with stress processing to explain adaptive behavior. Forty-four adolescents with SCD completed paper-and-pencil measures of health-related quality of life, appraisals (hope), pain coping(More)
OBJECTIVE Our objective with this study was to identify the nature and the role of spirituality from the parents' perspective at the end of life in the PICU and to discern clinical implications. METHODS A qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires was conducted at 3 PICUs in Boston,(More)
Youth with sickle cell disease (SCD) are at risk for functional limitations and poor health-related quality of life (QoL). This study examined sociodemographic factors that may interact with medical complications to reduce functional ability and QoL among youth with SCD. Fifty-three patient/caregiver pairs (children 8 to 18 years; M=12.3 y) with SCD(More)
OBJECTIVE Tested a family-based group problem-solving intervention, "Families Taking Control," (FTC) to improve school functioning and health-related quality of life (HRQL) for children with sickle cell disease. METHOD Children and caregivers completed questionnaires assessing HRQL and school functioning and children completed performance-based measures(More)
Children with sickle cell disease (SCD) are at risk for poor health-related quality of life (HRQOL). The current analysis sought to explore parent problem-solving abilities/skills as a moderator between SCD complications and HRQOL to evaluate applicability to pediatric SCD. At baseline, 83 children ages 6–12 years and their primary caregiver completed(More)
BACKGROUND Provision of spiritual/religious (S/R) care has been associated with improvements in patient care, patient-provider relationships, and resource utilization. Clinicians identify a lack of training in S/R care as the primary impediment. The purpose of the study was to evaluate the effectiveness of one-day, simulation-based workshops to prepare(More)
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