Exploring the impact of COVID-19 on families of children with developmental disabilities: A community-based formative study.

Background: COVID-19 continues to disproportionately impact families of children with developmental disabilities (DD). There is an urgent need to understand these families' experiences, particularly those that face economic or social marginalization. This qualitative study sought to identify the experiences of families of children with DD during the COVID-19 pandemic. Methods: Using phenomenology, in-depth interviews (IDIs) were conducted with caregivers and health care providers of children with DD living in a large urban Canadian city. Interviews were recorded, transcribed, and coded using inductive coding methods by two independent coders. Transcripts were analyzed within and across stakeholder groups using thematic analysis. Results: A total of 25 IDIs were conducted in 2020. 3 main themes and 7 sub-themes emerged related to the experiences of parents and health care providers for children with DD: families reported difficulty adhering to public health measures leading to isolation and increased parental stress; restricted access to in-person services worsened behaviour and development; and worsened household financial security in already marginalized families. Conclusions: Our study demonstrates that families of children with DD have been negatively impacted by the evolving environment from the COVID-19 pandemic, and even more so in those who face social and economic challenges. Public health restrictions have impaired the daily lives of these families and our study suggests that limitations to accessing in-person services may have long-lasting impacts on the well-being of families of children with DD. It is imperative that the unique needs of these families be considered and centred for future interventions.

A chair at the table: a scoping review of the participation of refugees in community-based participatory research in healthcare.

BACKGROUND: Refugees often face psychosocial complexity and multi-dimensional healthcare needs. Community-Based Participatory Research (CBPR) methods have been previously employed in designing health programs for refugee communities and in building strong research partnerships in refugee communities. However, the extent to which these communities are involved remains unknown. OBJECTIVE: To review the evidence on the involvement of refugees in CBPR processes to inform healthcare research. METHODS: A scoping review was performed, using Arksey & O'Malley's methodological framework. A literature search in Medline, PubMed, PsycINFO, CINAHL, Embase, Global Health, Scopus, and Policy File Index for articles published until August 2020 was conducted. Articles were included if they focused on CBPR, had refugee involvement, and discussed healthcare/health policy. RESULTS: 4125 articles were identified in the database searches. After removal of duplicates, 2077 articles underwent title and abstract review by two authors, yielding an inter-reviewer kappa-statistic of 0.85. 14 studies were included in the final analysis. The purpose of CBPR use for 6 (42.9%) of the articles was developing and implementing mental health/social support interventions, 5 (35.7%) focused on sexual and reproductive health interventions, 1 (7.1%) focused on domestic violence interventions, 1 (7.1%) focused on cardiovascular disease prevention and 1 (7.1%) focused on parenting interventions. In terms of refugee involvement in the various stages in the research process, 9 (64.3%) articles reported refugees having a role in the inception of the research, no articles reported including refugees in obtaining funding, all articles included refugees in the design of the research study, 10 (71.4%) articles reported having refugees involved in community engagement/recruitment, 8 (57.1%) articles reported involvement throughout the data collection process, 4 (28.6%) articles reported involvement in data analysis, 6 (42.9%) articles reported having refugees involved in knowledge translation/dissemination and 1 article (7.1%) reported having refugees contribute to scale up initiatives. CONCLUSIONS: CBPR has been identified as a methodology with the potential to make substantial contributions to improving health and well-being in traditionally disenfranchised populations. As the needs of refugee communities are so diverse, efforts should be made to include refugees as partners in all stages of the research process.

For the Parent, by the Parent: Creating a Program to Empower Parents of Refugee Background in Canada Using Novel Participatory Approaches.

BACKGROUND: Families of refugee background have complex, multigenerational mental health and developmental needs that are not accounted for in current programming frameworks in Canada. Providing appropriate support services and educational resources that address the unique concerns of families of refugee background will allow for improved family cohesion and developmental outcomes for children. Parenting programs have been shown to be successful in improving parental stress, parental efficacy, and children's mental health and well-being. This study gathers data about the experiences of caregivers of refugee background in order to develop a novel, multi-dimensional parenting program model using Community-Based Participatory Research (CBPR) principles. METHODOLOGY: This was a qualitative, CBPR study using a formative research framework. In-depth interviews (IDIs) were conducted with caregivers of refugee background and service providers that work closely with this population. Data were recorded, transcribed, and coded using deductive and inductive coding methods by two independent coders. RESULTS: A total of 20 IDIs were conducted (7 caregivers and 13 service providers). The main topics that were identified to be incorporated into the program include: features of child development, how to address resettlement issues, child advocacy, and parenting after resettlement. Participants felt that tackling language barriers, addressing the overlapping responsibilities of caregivers attending the sessions, providing incentives, increasing awareness of the program, and using an anti-racist and anti-oppressive approach was key to the program's success. Participants emphasized the need for trauma-informed mental health supports within the program model. CONCLUSION: This study describes the key considerations for a novel parenting program for families of refugee background, by engaging them as key stakeholders in the program design process. Future iterations of this project would involve a pilot and evaluation of the program.