My colleagues, students, and I developed FOCUS (Framing Opportunities and Challenges Using Stories) as an innovative and portable intervention designed to improve the psycho-social functioning of adolescents with Sickle Cell Disease or Cancer diagnoses. The intervention involves taking and captioning purposeful photographs that align with The Hero’s Journey, a guiding narrative template that chronicles a hero’s passage through life’s adventures and challenges, culminating in individual strength and transformation. Our preliminary data evaluating components of FOCUS revealed significant improvements in mood among healthy adolescents and young adults. Data suggest that reflecting on positive and negative daily events (e.g., via a photograph) and writing about the experiences have profound positive effects on a range of outcomes (e.g., grit, gratitude, functioning). In addition, the goal is to have adolescents share their photographs, stories, and advice with others with chronic illness through an app. Data indicate that prosocial behavior (e.g., providing advice to peers) and social connectedness have a number of positive outcomes. The central prediction is that FOCUS will be acceptable and feasible to deliver and that pilot data will reveal improvements in participants’ psychosocial health. Achieving these aims will provide the foundational data needed for additional grant applications to evaluate FOCUS with a larger sample of individuals with SCD, cancer, or other patient populations, powered to identify outcomes and mechanisms of change.
Aim 1. Refine FOCUS with Adolescents with SCD or cancer. Data collected via semi-structured interviews with 20 12- to 18-year-old patients with SCD or cancer will inform the refinement of the FOCUS intervention materials and its delivery. Qualitative analyses will guide intervention modifications.
Aim 2. Pilot FOCUS with Adolescents with SCD or cancer. A pilot randomized controlled trial will compare FOCUS to standard care. We will randomize 15 12- to 18-year-olds with SCD and 15 with cancer to FOCUS and 30 matched (age, sex) patients to standard care. FOCUS participants will engage in the intervention and complete measures for 10 days post hospital discharge. Control participants will complete similar measures but not receive the intervention. Mixed qualitative and quantitative measures of feasibility, acceptability, and preliminary outcomes (i.e., depressive and anxiety symptoms, quality of life, meaning and purpose, positive affect, satisfaction with life) will be conducted to evaluate both the intervention and study procedures.