Promoting Resilience Among Adolescents and Young Adults With Sickle Cell Disease
Boston Children's Hospital
Summary
Adolescents and young adults with sickle cell disease (SCD) face challenges managing their illness and maintaining their well-being. This study proposes to test the feasibility and acceptability of a resilience-promoting intervention through a Collaborative Care Model. The primary goal is to determine with the resilience intervention (PRISM) is feasible and acceptable for adolescents and young adults with SCD. Exploratory outcomes include whether this intervention improves depression, anxiety, and pain interference.
Description
Adolescents and Young Adults (AYAs) with blood disorders are at risk for poor physical, psychological, and social outcomes. Sickle Cell Disease (SCD) is a life-limiting condition, defined as a group of inherited red blood cell disorders disproportionally affecting non-Hispanic Black, African American, and Hispanic/Latino groups. AYAs with SCD experience racial bias, disease-related stigma, and under-treated symptoms, all of which translate to additional challenges managing their illness and maintaining their well-being. This study proposes to address the gaps of mental health support for youth…
Eligibility
- Age range
- 8–25 years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Aged ≥ 8 and ≤ 25 years of age at baseline * Diagnosed with Sickle Cell Disease (HbSS, HbSC, HbS-Beta Thalassemia, and other related hemoglobinopathies) * Receiving Medical Care at the DFCI/BCH Blood Disorders Center. * Scored \> 9 on Patient Health Questionnaire 9-item (PHQ-9) or Generalized Anxiety Disorder (GAD) * Able to speak English or Spanish language (for PRISM sessions) * Able to read English or Spanish language (for completion of surveys) * Cognitively able to participate in PRISM sessions and complete written questionnaires and surveys, as judged by the site i…
Interventions
- BehavioralCollaborative Care Model
The interprofessional team will meet weekly to review survey scores, endorsed psychological and physical health needs, as well as other concerns. They will conduct assessments as a group that may include referrals for additional support.
- BehavioralPromoting Resilience in Stress Management
PRISM targets 4 resilience resources: stress management, goal-setting, cognitive reframing and meaning-making. It is delivered one-on-one by trained coaches in English or Spanish via HIPAA compliant video-conference or in-person. Sessions are delivered every 1-2 weeks based on patient preference. To facilitate practice between sessions, all participants 13 or older have access to the digital PRISM app.
Location
- Boston Children's HospitalBoston, Massachusetts