Narrating Their Story: Shadow's Edge Mobile Game Use to Enhance Resilience and Identity Formation Among Adolescent and Young Adult Survivors of Cancer
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Enrollment
- 177
- Locations
- 2
- Primary Endpoint
- Resilience
Study Overview
Brief Summary
This study evaluates the efficacy of an interactive mobile game, Shadow's Edge, on enhancing resilience, promoting identity development, and decreasing somatic symptoms among adolescent and young adult survivors of cancer.
Detailed Description
Approximately 80% of youth treated for cancer during childhood will survive long-term; however, the majority of adolescent and young adult cancer survivors (AYACS) report at least one chronic health condition. These medical and cognitive-psychological late effects can disrupt or interfere with continual adaptation to post-treatment life, thereby negatively impacting identity formation and inhibiting AYACS from seeking fulfilling academic, career, and social relationship experiences. The Shadow's Edge mobile app was created for adolescent and young adults with complex medical conditions as an enjoyable and engaging digital, first-person perspective game that uses principles of narrative and creative arts therapies to encourage youth to reflect on, and create brief, developmentally-relevant narratives about, their life experiences. In this trial, investigators will conduct a two-arm, waitlist randomized controlled trial to evaluate the effectiveness of the Shadow's Edge game in promoting resilience and identify formation among AYACS. Participants will be 175 AYACS who receive clinical care in a large, pediatric cancer survivorship program. Data will be collected from medical records, mobile game play statistics, participant narratives and art created in the game platform, and participant responses to standardized assessments. Information gathered through this study will be used to establish initial game efficacy and to lead to Shadow's Edge game enhancements that will further improve acceptability and effectiveness of the game. The ultimate goal of this project is to provide a freely accessible, enjoyable and engaging self-led game that may bolster resilience resources, improve quality of life, and promote identity formation among adolescents and young adults with complex medical conditions.
Study Design
- Study Type
- Interventional
- Allocation
- Randomized
- Intervention Model
- Crossover
- Primary Purpose
- Supportive Care
- Masking
- Single (Care Provider)
Eligibility Criteria
- Ages
- 13 Years to 24 Years (Child, Adult)
- Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- •Adolescent/young adults 13-24 years of age
- •Adolescent/young adult English-speaking at a second grade level
- •Parent/guardian English- or Spanish-speaking at a second grade level (for participants younger than 18 years of age)
- •Patients with history of hematological malignancies (e.g., acute lymphoblastic leukemia) at maintenance phase of treatment or beyond or solid tumor patients (e.g., osteosarcoma) who have completed active treatment or cancer survivors with any form of malignancy history (excluding brain tumors) and are at least 2 years post-diagnosis of the malignancy
- •Consistent access to a mobile phone and/or internet service
Exclusion Criteria
- •Brain tumor history
- •History of moderate to severe neurodevelopmental disorder (e.g., autism spectrum disorder)
Outcomes
Primary Outcomes
Resilience
Time Frame: Baseline to 14-week follow-up
Resilience will be measured by participant responses to the Brief Resilience Scale (BRS), a 6-item measure with response options on 5-point Likert scale ranging from "1, strongly disagree" to "5, strongly agree" and total scores ranging from 6 to 30 (higher scores indicating greater resilience).
Secondary Outcomes
- Anxiety(Baseline to 14-week follow-up)
- Relative daily activity(Baseline to 14 week follow-up)
- Perceived benefit and burden(Baseline to 14-week follow-up)
- Depressive symptoms(Baseline to 14-week follow-up)
- Sleep and sleep quality(Baseline to 14 week follow-up)
- Self-identity after cancer(Baseline to 14-week follow-up)
- Daily fatigue(Baseline to 14 week follow-up)
- Daily affect(Baseline to 14 week follow-up)
- Life meaning and purpose(Baseline to 14-week follow-up)
- Daily pain intensity(Baseline to 14 week follow-up)
- Fatigue(Baseline to 14-week follow-up)
- Pain Intensity(Baseline to 14-week follow-up)
- Positive affect(Baseline to 14-week follow-up)
- Identity status(Baseline to 14-week follow-up)
Investigators
Bonnie Essner, PhD
Pediatric Psychologist
Ann & Robert H Lurie Children's Hospital of Chicago