Development and pilot testing of an empowerment-based intervention for adolescents and young adults living with HIV transitioning to adult HIV care in Uganda

Technical Summary: Development and Pilot Testing of an Empowerment-Based Intervention for Adolescents and Young Adults Living with HIV in Uganda

Problem Statement
The transition from adolescent to adult HIV care represents a critical vulnerability period for adolescents and young adults living with HIV (AYLHIV). This period is characterized by increasing responsibility for health management occurring alongside psychosocial, developmental, and structural challenges. In low- and middle-income countries like Uganda, transition is frequently determined by chronological age rather than individual readiness, often resulting in inadequate preparation. Consequently, AYLHIV face high rates of loss to follow-up and mortality during this transition. Existing interventions often prioritize biomedical outcomes and are developed in high-income settings, lacking emphasis on empowerment and contextual relevance for resource-constrained environments. There is a specific gap in evidence regarding the design, feasibility, and acceptability of empowerment-focused interventions tailored to the psychosocial needs of AYLHIV in these settings.

Methodology
The study employed a mixed-methods, three-phase approach to develop and pilot the "Empowerment and Personal Transformation" (EPT) intervention:

1. Qualitative Needs Assessment: Researchers conducted in-depth interviews with 60 participants, including 30 AYLHIV (aged 15–24), 20 caregivers, and 10 healthcare providers at the Mbarara Regional Referral Hospital in Uganda. Data were analyzed using thematic analysis to identify key psychosocial and behavioral needs.
2. Intervention Development: Guided by Empowerment Theory (Zimmerman, 2000) and Social Cognitive Theory (Bandura, 1994), the EPT intervention was designed using a Person-Based Approach and the Medical Research Council (MRC) Framework. The content was iteratively refined through stakeholder focus groups (n=30), expert review by clinical psychologists, and pretesting with 20 AYLHIV.
3. Pilot Implementation and Evaluation: The final six-module intervention was implemented with 40 AYLHIV. Feasibility and acceptability were assessed using the Feasibility of Intervention Measure (FIM) and the Acceptability of Intervention Measure (AIM) among the 37 participants who completed the program. Internal consistency was evaluated using Cronbach's alpha.

Key Contributions
The paper contributes a contextually grounded, theory-driven intervention designed specifically for the Ugandan setting. Its primary contributions include:

• Identification of Six Key Themes: The qualitative phase identified critical needs: communication/self-advocacy skills, confidence/personal agency, stigma/emotional challenges, resilience/coping, self-management/transition readiness, and the need for safe emotional expression.
• The EPT Intervention Structure: A six-module curriculum was developed to address these themes sequentially:
  1. Communication for Care Engagement and Relationships.
  2. Empowerment, Mindfulness, and Self-Regulation.
  3. Self-Concept, Emotions, and Beliefs.
  4. Coping with Stress, Trauma, and Building Resilience.
  5. Autonomy, Responsibility, and Self-Management.
  6. Experiential and Expressive Approaches to Emotional Processing.
• Integration of Theory and Local Context: The study demonstrates how qualitative findings from local stakeholders can be systematically mapped to theoretical constructs to create a culturally responsive intervention.

Results

• Feasibility: The intervention demonstrated high feasibility. The mean feasibility score was 18.37 (SD = 2.10) out of 20. Between 94.6% and 100% of participants agreed or strongly agreed that the intervention was implementable, possible, doable, and easy to use. The FIM scale showed good internal consistency (Cronbach's α = 0.86).
• Acceptability: The intervention showed high acceptability. The mean acceptability score was 18.51 (SD = 2.02) out of 20. Over 94% of participants agreed or strongly agreed that the intervention met their approval, was appealing, and was welcomed. The AIM scale demonstrated excellent internal consistency (Cronbach's α = 0.92).
• Completion: 37 of the 40 enrolled participants (92.5%) completed all intervention sessions.

Significance and Claims
The authors claim that the EPT intervention is a feasible and acceptable approach for supporting AYLHIV transitioning to adult HIV care in Uganda. They posit that empowerment-focused interventions, which address psychosocial dimensions alongside clinical care, can enhance transition readiness by strengthening self-confidence, self-advocacy, and decision-making capacity. The study suggests that such interventions can be integrated into routine HIV care settings without imposing excessive burdens on providers or participants.

The authors maintain a modest tone regarding the study's scope. They explicitly note that the findings are preliminary and limited by the single-site setting and the potential for social desirability bias, as participants may have felt inclined to provide favorable responses in a clinical context. They acknowledge that the results may not generalize to AYLHIV who are poorly engaged in care. Consequently, the paper concludes that while the EPT intervention shows promise as a contextually relevant tool, further research is required to assess its adaptability and effectiveness across diverse populations and settings before broader implementation.