Abstract
Evidence generated from partnering with parents to design and conduct research together may be used to refine, adjust, and modify future research approaches. This study aimed to describe the initial approaches to parent engagement in the design of the PARENT trial as well as understand parent perspectives on the acceptability and relevance of the PARENT trial and potential barriers and facilitators to participation.Parents participating in the TARGet Kids! cohort were invited to participate in a focus group, called the PARENT panel, to co-design the PARENT trial. This focus group was conducted to capture diverse individual and collective parents’ experiences. Overall methodological approaches for the PARENT panel were informed by the CIHR Strategy for Patient Oriented Research (SPOR) guiding principles (mutual respect, co-building, inclusiveness, and support) for patient engagement in research, and facilitated through the Knowledge Translation Program in the Li Ka Shing Knowledge Institute at Unity Health Toronto. Using a Nominal Group Technique, the PARENT panel provided feedback on the feasibility, relevance, and acceptability of the proposed intervention. Findings from this work will be used to further refine, adjust, and modify the next iteration of the PARENT trial, which will also serve as an opportunity to discuss the efforts made by researchers to incorporate parent suggestions and what additional steps are required for improved patient engagement.
Highlights
Patient-oriented research focuses on engaging patients in the research process
PARENT panel in the TARGet Kids! cohort Parents participating in the TARGet Kids! cohort were invited to participate in a focus group, called the PARE NT panel, to co-design the PARENT trial
Participants felt that visits from public health nurse would provide a unique opportunity to ask questions, receive support, and add accountability to the proposed behavioural changes
Summary
Patient-oriented research focuses on engaging patients in the research process. This type of engagement helps to ensure that research answers questions relevant to patients and uses collaboratively developed methods, and interpretation of results, with the goal of improved patient outcomes [1]. The Applied Research Group for Kids (TARGet Kids!; www.targetkids.ca) is an ongoing cohort study with embedded randomized controlled trials (RCTs), which involves parents and young children from primary care practices in three cities in Canada (Toronto, Montreal, and Kingston). Presents a unique opportunity to engage parents and inform research priorities, improve study recruitment and generalizability, and co-develop embedded clinical trials. The aim of the PARENT trial is to determine if participation (experimental group) with a public health nurse via group parenting sessions (i.e. coaching calls addressing goal setting), and home virtual visits (i.e. addressing behaviours in the home setting) focused on nutrition, physical activity, and sleep among young children at risk of obesity can improve health outcomes such as reduced risk for overweight or obesity, and better mental health and nutrition. Informed consent was obtained from the parents of children who participated in this study
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