Publications by authors named "Rebecca Rupff"

2 Publications

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The Adolescent and Caregiver Sickle Cell Disease Self-management Skills Checklist: Preliminary Reliability and Validity.

J Pediatr Hematol Oncol 2020 01;42(1):12-19

Department of Psychology.

Adolescents with sickle cell disease (SCD) need assistance in developing the knowledge and skills that contribute to increased disease self-management and successful transition to adult-based health care. This study evaluated the preliminary psychometric properties of the Self-Management Skills Checklist (SMSC and SMSC-C; Adolescent and Caregiver versions), a measure of perceived SCD-specific knowledge and skills. A retrospective cohort study included 114 adolescents (mean=15.6 y) and their caregivers. We examined internal structure and reliability, score changes over time, and group differences. Cronbach coefficient alphas were 0.79 and 0.74 for caregiver-reported Skills and caregiver-reported knowledge, respectively, and 0.77 and 0.44 for adolescent-reported skills and adolescent-reported knowledge, respectively, indicating good internal consistency for 3 of the subscales. Poor reliability in the adolescent-reported knowledge summary score and factor analysis suggest an interpretation item-by-item, independent of one another. Participant group differences in age and chronic transfusion treatment existed in both summary and subscale scores of the SMSC and SMSC-C. Follow-up administrations of the scales indicated an increase in caregiver-reported skills for their adolescents from time 1 scores (M=3.72±0.83) to time 2 scores (M=3.99±0.63) (t16=2.178, P=0.045). Findings provide preliminary support for the usage of the SMSC and continued development to improve its psychometrics.
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January 2020

Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease.

J Pediatr Psychol 2017 10;42(9):1016-1027

Department of Psychology, St. Jude Children's Research Hospital, Memphis, TN.

Objectives: The aim of this study was to explore perspectives of transition and transition readiness of young adult patients (YAs) with sickle cell disease (SCD) who have transitioned to adult health care.

Methods: In all, 19 YAs with SCD (ages 18-30 years) participated in one of three focus groups and completed a brief questionnaire about transition topics. Transcripts were coded and emergent themes were examined using the social-ecological model of adolescent and young adult readiness for transition (SMART).

Results: Themes were consistent with most SMART components. Adult provider relationships and negative medical experiences emerged as salient factors. YAs ranked choosing an adult provider, seeking emergency care, understanding medications/medication adherence, knowing SCD complications, and being aware of the impact of health behaviors as the most important topics to include in transition programming.

Conclusions: The unique perspectives of YAs can inform the development and evaluation of SCD transition programming by incorporating the identified themes.
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October 2017