Youth Advisory Boards in Healthcare Settings: An Ethnographic Study of Youth Participation in an Accountable Care Organization

Background and Purpose: In recent years, the transition of hospitals to accountable care organizations (ACO’s) has led to an increased focus on patient engagement in health care delivery. Studies show improved experiences and outcomes when patients are involved in health care decision making. Despite these promising advancements, there is a lack of research on engaging youth on hospital advisory boards. The literature that exists documents multi-level barriers, including systems and structures steeped in adultism that are resistant to input from youth. This paper is part of a larger multi-methods study aimed to 1) develop a youth advisory board (YAB) comprised of 8 youth of color, and 2) engage the board in a data-driven planning process to develop and vet a multi-level health promotion campaign for a large ACO. It answers the research question: What are the barriers and facilitators to developing and sustaining a YAB in a hospital setting?

Methods: An in-depth study of the development and functioning of a youth advisory board in a hospital in a large Northeast city was conducted using ethnographic methods. Data were collected over a 1-year time period and included semi-structured interviews with youth (n=24), interviews with adult allies (n=15), focus groups with youth and adult allies (n=2), observations of weekly Board meetings (n=32), and review of program documents. Data were analyzed using thematic analysis to identify barriers and facilitators to developing and sustaining the YAB, including a cursory review of the data, developing initial codes, applying initial codes to additional data, expanding upon the codes, and collating the codes into final themes. The themes included YAB member expectations, leadership and power structures, anti-racist practice, and sustained institutional commitment.

Findings: Data analysis identified that youth and adults had both converging and diverging views on the facilitators and barriers to developing and sustaining a YAB. While the adult allies perceived the expectations of the YAB to be clear, the youth desired more direction and guidance from adults. Similarly, the adult allies conceptualized the power structure to be a youth-adult partnership however the youth perceived the structure to be hierarchical and mirror white supremacy culture. Both the adult allies and the youth identified areas of strength in terms of adult readiness to facilitate the YAB but there was a need for additional training on anti-racist practice. Finally, the leadership of the hospital was committed to developing the YAB yet barriers (e.g., funding, time, resources) to sustaining the board were identified.

Conclusions and Implications: This study provides an in-depth analysis of youth participation in a YAB in a hospital setting. The authors will discuss implications for practice including setting clear expectations of youth and adults, providing ongoing support and direction to youth, addressing power structures to ensure meaningful participation, providing adults with training on anti-racist practice, and ensuring buy-in from hospital leadership to sustain youth engagement in the context of the YAB. Recommendations for future research will be discussed.