Using Qualitative Perspectives of Adolescents with Sickle Cell Disease and Caregivers to Develop Healthcare Transition Programming.

Youth with sickle cell disease (SCD) are living longer, requiring transition from pediatric to adult health care. Transition programs have been created to improve transition readiness and help patients take responsibility for their health. The aim of this study was to explore the usefulness of current transition materials and identify unmet transition needs from the perspective of adolescents with sickle cell disease (SCD) and caregivers to refine transition programming and interventions.

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

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).

Caregiver Perspectives of Stigma Associated With Sickle Cell Disease in Adolescents.

Unlabelled: Patients and families affected by various medical conditions report experiencing health-related stigma, which contributes to detrimental physical, psychological, and social outcomes. Sickle cell disease (SCD) is a genetic disorder that affects 89,000 individuals in the United States and is often associated with negative stereotypes and incorrect assumptions. The present study explored the perception of stigma as reported by caregivers of adolescents with SCD.

A review of mobile applications to help adolescent and young adult cancer patients.

Objective: To review research articles utilizing mobile applications with adolescent and young adult (AYA) cancer patients.

Materials And Methods: We identified articles via online searches and reference lists (eg, PsycInfo, PubMed). Articles were reviewed by two study team members for target population, stated purpose, technological utilization, sample size, demographic characteristics, and outcome data.

Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development.

Objective: Review measures of readiness to transition to adult-oriented care for youth with chronic physical health conditions.

Methods: Identified measures via online searches and reference lists and reviewed methods of development, theoretical underpinnings, characteristics, and psychometrics. Measures were classified according to American Psychological Association Division 54 Evidence-Based Assessment (EBA) Task Force criteria.

Physical symptoms, perceived social support, and affect in adolescents with cancer.

Treatment for cancer among adolescents is often more intense and lasts longer than treatment for older or younger patients. It typically causes pain, fatigue, and nausea and affects social and emotional well-being. This study examined the relationships among demographics, physical symptoms, perceived social support from friends and family, and affect (positive and negative) in 102 adolescents (age 13-19) with cancer using correlational analyses.