78 Asking, listening, understanding: Establishing parent and youth priorities in child health research

Abstract

Abstract Primary Subject area Advocacy Background A growing body of literature supports the active involvement of stakeholders in the prioritization and dissemination of evidence-based health care information. However, in child health related research, the perspectives of parents and youth are rarely acknowledged. Objectives To engage parents and youth in identifying and developing priority lists of research topics that are most relevant and important to youth and their families. Design/Methods We engaged parents and youth across Alberta in a modified James Lind Alliance priority setting exercise. Two lists, containing 27 topics were developed and modified in consultation with local parent and youth advisory groups. The respective lists were sent to parents and youth via online surveys. The anonymous surveys asked parents and youth to rank the topics by rating the degree (5-point Likert scale) to which they agreed the topic was a priority for child health research. All topics rated “Agree” or “Strongly Agree” by ≥ 70% of respondents were retained for discussion. Online focus groups (utilizing deliberative dialogue) to discuss priority topics were held with parents and youth, separately. Focus group discussions were analyzed using thematic analysis; resultant themes and subthemes were used to produce representative research questions. These were then sent via a second online survey to all participating parents and youth, who were asked to rank their ‘top 10’ most important child health research topics. Ethics approval was received from our institutional ethics board, and all participants gave informed consent or assent, prior to any data collection. Results Initial surveys were completed by 273 parents and 344 youth. This resulted in 5 highly rated health research topics for parents (behaviour, learning, and developmental disorders; mental health; food, environment and lifestyle; quality of health care; and vaccines) and 4 for youth (brain and nerve health, mental health, quality of health care, and vaccines), respectively. The research questions stemming from four parent (n=12) and six youth (n=21) focus group discussions were ranked in a second survey, completed by 43 parents and 62 youth. Parents’ highest ranked research topic was “effect of screen time on children’s neurodevelopment”, while the highest ranked topic from youth was “early signs of anxiety and depression in children and youth” (Tables 1 & 2). Conclusion Utilizing the knowledge and experience of Albertan parents and youth, relevant lists of priority topics in child health research were developed. These lists highlight the areas where funding and research should be directed to improve child health outcomes and patient care experiences that are important to parents and youth.