Doing community involvement care-fully: using an ethic of care to guide involvement in research on women's health after pregnancy complications and loss.

Consumer and Community Involvement (CCI) occurs when people with lived experience collaborate with researchers to design and conduct research. CCI has widely accepted benefits and is increasingly expected by funders and publishers. However, researchers may also be concerned about how to conduct CCI ethically, especially because human research ethical review processes are poorly aligned with the intentions of CCI. We explore how an Ethic of Care framework, emphasizing attentiveness, responsibility, competence, responsiveness, and solidarity, was used to guide CCI in a recent project about women's health and healthcare experiences in the years after pregnancy complications and loss (a population, bereaved women, that might be considered vulnerable). Informed by an Ethic of Care we invited Australian maternity consumer organisations to nominate representatives to form a Lived Experience Expert group, who made meaningful contributions to study design and recruitment, data collection, analysis and interpretation, and the development of study outputs. Our Care Ethical approach prioritised addressing power imbalances and creating meaningful opportunities to influence all aspects of the study, including communicating how advice was actioned. It delivered ongoing relationships with consumer representatives and their organisations, as well as capacity building for both consumers and researchers. An Ethic of Care can guide authentic CCI to ensure reciprocity, prevent tokenism, and foster long-term relationships and mutual trust between researchers and consumers, demonstrating that the early and authentic involvement of vulnerable populations is both feasible and beneficial.