ABSTRACT
In Community-Based Participatory Research (CBPR), people with shared lived experiences (co-researchers) identify priority needs and work collaboratively to co-design an action-oriented research advocacy project. For this to occur, academic researchers must build mutually respectful partnerships with co-researchers by establishing trust. In the context of the COVID-19 pandemic, our objective was to virtually assemble a group of co-researchers (people with diverse but relevant experiences of homelessness and diabetes) and academic researchers who engaged in the CBPR process to identify a project that would address the difficulties of diabetes management while experiencing homelessness. Co-researchers were recruited to the committee from community homeless-serving organizations. Six co-researchers, one peer researcher and three academic researchers from Calgary, Alberta met virtually for bi-weekly committee meetings, from June 2021 to May 2022 to explore barriers to diabetes management and to complete a priority-setting exercise to determine the focus of our collective project. After reflecting on our virtual CBPR experience we present lessons learned related to: i) technical challenges and logistical considerations, ii) meeting virtually and building rapport, iii) driving engagement, and iv) challenges of transitioning from virtual to in-person meeting format. Overall, the process of conducting a CBPR project virtually to engage a group of co-researchers during a pandemic presents its challenges. However, a virtual CBPR project is feasible and can lead to meaningful experiences that benefit all group members, both from the community and academia.
In Community-Based Participatory Research (CBPR), we value peoples' lived experiences as knowledge and believe that it can help in the design of research projects. In these projects, people with similar lived experiences work with researchers to design a research advocacy project that will make meaningful changes in their community. Trust and respect between all team members are essential for working well together. Establishing trust and respect can be difficult, especially when done virtually. We virtually convened a committee and completed a CBPR project. Our group consisted of seven people with lived experience of diabetes and homelessness and three academic researchers in Calgary, Alberta. We met every two weeks between June 2021 and May 2022 to explore possible topics for our CBPR project, which we narrowed down to their top priority. As we reflected on our experience of working together, we came up with four categories of lessons learned: i) technical challenges, ii) building rapport, iii) driving engagement, and iv) challenges of transitioning from virtual to in-person meeting format. While our experience presented its challenges, we found working virtually to create a CBPR project is possible and can be meaningful for all group members.
ABSTRACT
BACKGROUND: Neonatal intensive care unit (NICU) history, combined with systemic inequities for mothers of nondominant cultures and mothers who are socioeconomically disadvantaged, places infants at an extraordinary risk for poor developmental outcomes throughout life. Although receipt of early intervention (EI) is the best single predictor of developmental outcomes among children with and at risk for early developmental delays, mothers and infants with the greatest needs are least likely to receive EI. Mobile internet-based interventions afford substantial advantages for overcoming logistical challenges that often prevent mothers who are economically disadvantaged from accessing EI. However, the bridge from the NICU to a mobile internet intervention has been virtually unexplored. OBJECTIVE: This study aims to examine progression flow from NICU exit referral to an early mobile internet intervention to increase EI access and promote parent mediation of infant social-emotional and communication development. METHODS: Three NICUs serving the urban poor in a Midwestern city were provided support in establishing an electronic NICU exit referral mechanism into a randomized controlled trial of a mobile internet intervention for mothers and their infants. Measurement domains to reflect the bridge to service included each crucial gateway required for navigating the path into Part C EI, including referral, screening, assessment, and intervention access. An iterative process was used and documented to facilitate each NICU in establishing an individualized accountability plan for sharing referral materials with mothers before their NICU exit. Subsequent to the referral, progression flow was documented on the basis of a real-time electronic recording of service receipt and contact records. Mother and infant risk characteristics were also assessed. Descriptive analyses were conducted to summarize and characterize each measurement domain. RESULTS: NICU referral rates for EI were 3 to 4 times higher for open-shared versus closed-single gatekeeper referral processes. Of 86 referred dyads, 67 (78%) were screened, and of those screened, 51 (76%) were eligible for assessment. Of the 51 assessment-eligible mothers and infants, 35 dyads (69%) completed the assessment and 31 (89%) went on to complete at least one remote coaching intervention session. The dyads who accessed and engaged in intervention were racially and ethnically diverse and experiencing substantial adversity. CONCLUSIONS: The transition from the NICU to home was fraught with missed opportunities for an EI referral. Beyond the referral, the most prominent reason for not participating in screening was that mothers could not be located after exiting the NICU. Stronger NICU referral mechanisms for EI are needed. It may be essential to initiate mobile interventions before exiting the NICU for maintaining post-NICU contact with some mothers. In contrast to a closed, single point of referral gatekeeper systems in NICUs, open, shared referral gating systems may be less stymied by individual service provider biases and disruptions.
