RESUMO
The COVID-19 pandemic represented not only a health crisis, but a social crisis for children, one that has disrupted notions of what a good childhood is. However, the longer-term implications of the pandemic are still to be seen, for children, their families and communities. This article is concerned with what these ongoing changes may be, based on a qualitative multi-stage study that asks children about their experiences of well-being before the pandemic, during lockdowns and post-COVID-19 lockdowns. This included asking seven children in online semi-structured interviews about what aspects of life brought on by COVID-19 restrictions they would like to see continue post-lockdown. We outline some of our findings. We describe new rituals and ways of organising time developed by children, facilitated by the use of digital technologies. We describe these new ways of managing time as task-based rather than rule-based, with children experiencing slowness of and greater control over their time. We found that lockdowns provided a possibility for children to assert a public agency through banal acts of sociability, for example, by conforming to public health measures such as mask-wearing and hand-washing. Whilst small acts, children discussed these in terms of being moral agents (protecting the safety of others) and as part of a larger civic attitude they observed around them. Thus, their acts can be seen as expressions of larger forms of social solidarity that contributed to a sense of collective effervescence.
RESUMO
PURPOSE: Identify perceptions of parents and caregivers of children with cerebral palsy about being consumer research partners and identify strategies to inform involvement of parents in cerebral palsy research. MATERIALS AND METHODS: Twenty-two parents in New South Wales and Victoria (Australia) participated in this qualitative study. Seven interviews and three focus groups were completed. Interpretive description guided data analysis. Methodological rigor was enhanced through involving two consumer investigators in the research team, member checking, and multiple researchers completing data analysis and theme generation. RESULTS: Participants identified a range of factors that may influence their involvement in research partner roles. Main topics emerging from the data included "Research Is Better with Parents" and "Parents Benefit from Being Research Partners." A third, "Parents as Research Partners," contained the themes "Flexible Involvement," "Starting Partnerships," and "Building and Sustaining Partnerships." CONCLUSION: This study has provided a rich insight into how parents perceive and describe engaging as research partners. Parent-identified guidance will inform future partnerships aiming to enhance the quality of cerebral palsy research and outcomes for people with cerebral palsy and their families. The involvement of consumer investigators in this study was considered valuable for enhancing the quality and applicability of the research.IMPLICATIONS FOR REHABILITATIONParents believed that parent partnership in research has benefits for the research and for the consumers involved.Parents provided guidance about the importance of starting, building and sustaining relationships in involving parents as research partners.Understanding the parent context, investing in relationships and acknowledgement of, and recognition for, contributions were considered important for building and sustaining effective partnerships.Flexible approaches to supporting parents as research partners was considered necessary for effective partnership.
