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Acceptance and Commitment Therapy for Adolescents and Young Adults With Sickle Cell Disease

Using Acceptance and Commitment Therapy (ACT) to Promote Mental Health and Transition Readiness in Youth With Sickle Cell Disease: A Community-Based Participatory Action Research (CBPAR) Approach

Status
Recruiting
Phases
Phase 1Phase 2
Study type
Interventional
Source
ClinicalTrials.gov
Registry ID
NCT05685368
Acronym
ACT for SCD
Enrollment
66
Registered
2023-01-17
Start date
2025-04-01
Completion date
2029-06-30
Last updated
2026-05-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Depression, Anxiety, Quality of Life, Race-related Stress, Stress Reaction

Keywords

Black, African American, Adolescents, Acceptance and Commitment Therapy, race-related stress, racial trauma, coping

Brief summary

The current study seeks to build on previous research that demonstrates the efficacy of Acceptance and Commitment Therapy in combating stigma by investigating the feasibility and acceptability of a protocol to support Black adolescents and young adults in coping with race related stress. The study will consist of a small, purposeful, non-randomized sample (N = 30) of clients enrolled into a 10-session Acceptance and Commitment Therapy group. The group will be offered as part of regular clinical care at the Division of Adolescent and Young Adult Medicine. Three consecutive groups will be run with approximately 8-10 participants in each group over the next year.

Interventions

BEHAVIORALACT for SCD

Phase I Using a convenience sample, this study examines the feasibility and acceptability of a proposed 6-session ACT group intervention for Black youth with sickle cell disease (SCD), who experience compounded stress due to chronic illness and systemic inequities. A up to 11 youth and up to 11 parents/legal guardians will be enrolled in an ACT group offered via the Division of Adolescent and Young Adult Medicine. Participants will complete assessments at pre-, and post-intervention, and at a 3-month follow-up. Up to 5 of 11 parents/legal guardians and 5 of 11 youth (not required to be dyadic) will also be a part of the studies community advisory board (CAB) to ensure the intervention is culturally and developmentally responsive and grounded in community perspectives. Phase II Over the next 3 years this study will use a community-based participatory action research approach, extending and integrating feedback data collected in Phase I, to conduct a crossover waitlist-control trial.

Sponsors

Children's Hospital Los Angeles
Lead SponsorOTHER
University of Southern California & Children's Hospital Los Angeles (USC-CHLA)
CollaboratorUNKNOWN

Study design

Allocation
NA
Intervention model
CROSSOVER
Primary purpose
TREATMENT
Masking
NONE

Eligibility

Sex/Gender
ALL
Age
14 Years to 21 Years
Healthy volunteers
No

Inclusion criteria

Youth Participant Inclusion and

Exclusion criteria

The inclusion criteria for study participation are Be an adolescent and/or young adult (age 14-21) who has Sickle Cell Disease Willing to enroll in the ACT group jointly provided by the Division of Adolescent and Young Adult Medicine/Department of Hematology and Oncology Participants can be active, waitlisted, or new patients at CHLA Participants must be able to understand and speak English, as the therapy will only be delivered in English Participants must have an English-speaking parent/guardian Able to provide consent/assent An adolescent or young adult that is pregnant is eligible to participate if consent can be obtained Participants must be developmentally typical Have a stable internet connection (via computer, tablet, or phone) with access to a webcam and a private space to engage in a group therapy sessions; Must consent to audio and video recording of initial interview. Must agree to attend 6 weekly ACT group session Youth participants will be asked to become a member of the CAB. To become a CAB member, the youth participant must consent/assent to participation in the ACT intervention. If a CAB member, they must be willing to engage in CAB interviews and meetings. The

Design outcomes

Primary

MeasureTime frameDescription
Total Score on Index of Race-Related Stress (IRRS)-Brief Version12 weeksHigher scores on this measure indicate greater race-related stress. The minimum score on this measure is 0 and the maximum is 88.
Sickle Cell Self-Efficacy Scale6 mosa 9-item, self-administered questionnaire that measures an adult's confidence in managing sickle cell disease (SCD) day-to-day, including pain, emotions, and daily functioning.
SCD Health-Related Internalized Stigma Scale6 mosan 11-item tool assessing internalized stigma and other factors in sickle cell disease (SCD) patients
Transition Readiness Assessment Questionnaire (TRAQ),6 mosmeasure acquisition of transition readiness skills across the five stages of change

Secondary

MeasureTime frameDescription
Total Scores on Acceptance and Action Questionnaire-212 weeksHigher scores on this measure indicate greater psychological flexibility. The minimum score on this measure is 7 and the maximum is 49.
Total Scores on Multidimensional Inventory of Black Identity-Teen (MIBI-t)12 weeksHigher scores on this measure indicate stronger racial identity. The minimum score on this measure is 21 and the maximum is 105.
Total Score on Patient Health Questionaire-912 weeksHigher scores indicate greater depression. The minimum score on this measure is 0 and the maximum is 27.
Total Score on General Anxiety Disorder-712 weeksHigher scores indicate greater anxiety. The minimum score on this measure is 0 and the maximum is 21.

Countries

United States

Contacts

CONTACTXzania Lee, PhD
xlee@chla.usc.edu323.361.4768
PRINCIPAL_INVESTIGATORXzania Lee, PhD

Children's Hospital Los Angeles

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: May 7, 2026