635 - Families’ Perceptions of Barriers to Pediatric Latent Tuberculosis Care Engagement: A Mixed-Methods Study

Poster Number: 635
Publication Number: 635.226

Yamini Adusumelli, Boston University of Medicine, Boston, MA, United States; Mary E. Tabatneck, Boston Children's Hospital, Boston, MA, United States; Susan N. Sherman, SNS RESEARCH, CINCINNATI, OH, United States; Gabriella S. Lamb, Boston Children's Hospital, Boston, MA, United States; Vishakha Sabharwal, Boston University School of Medicine, Boston, MA, United States; don a. Goldmann, Boston Children's Hospital, lexington, MA, United States; Alexandra Epee-Bounya, Boston Children's Hospital, Harvard medical school, Boston, MA, United States; Jessica E. Haberer, Massachusetts General Hospital, Boston, MA, United States; Thomas J. Sandora, Boston Children's Hospital, Boston, MA, United States; Jeffrey I. Campbell, Boston University School of Medicine, Boston, MA, United States

Background: There are an estimated 1 million children and adolescents with latent tuberculosis (TB) infection in the US; without diagnosis and treatment, 5-10% will develop TB disease. Identifying barriers and facilitators in the TB infection care cascade could improve diagnosis and treatment completion for these children.

Objective: Leveraging existing care cascade, care access, and health knowledge/beliefs frameworks, we explored family perspectives on pediatric TB infection diagnosis and care, and perceptions and knowledge about TB infection. Our goal was to understand factors leading to engagement across steps of the care cascade.

Design/Methods: We conducted a convergent mixed methods study with caregivers of children and adolescents diagnosed with TB infection in Massachusetts who either completed or did not complete treatment. Caregivers participated in semi-structured qualitative interviews that explored experiences with access and barriers to TB infection care. Interviews also solicited personal stories and general attitudes toward TB infection. We used applied thematic analysis to code and then identify emergent themes in the transcribed interviews. Participants also completed surveys regarding their knowledge, attitudes, and beliefs about TB infection.

Results: Of the 51 caregivers invited, 19 participated. Analysis revealed perceived facilitators and barriers along the care cascade, which acted at both individual/family and community/health-system levels (Figure 1). Key themes included the role that risk identification strategies and pre-existing knowledge/beliefs played in affecting TB risk perception; the importance of trust in clinicians, adherence behavioral skills, and social/instrumental resources in initiating and sustaining engagement; and community/health system-level challenges (and solutions) related to accessibility and cost that enabled or impeded engagement. TB-specific facilitators and barriers, such as TB stigma, medication tolerability, and immune status, were important components of each of these themes. In addition, emerging child autonomy and development, family social support, and TB stigma were important drivers of engagement.

Conclusion(s): Risk perception, trust, instrumental and social resources, TB stigma, adherence skills, accessibility and cost enabled and impeded engagement in the pediatric TB infection care cascade. Our results delineate an integrated pediatric TB infection care engagement framework that can inform interventions to improve cascade retention.