Research priorities of women at risk for preterm birth: findings and a call to action

Abstract

Background: Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research. Methods: We used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve 'top-priority' research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences.Results: Fifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions.Conclusions: These findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities.

Nurses’ Priorities for Improving Pregnancy and Birth Care for Individuals with Opioid use Disorder

“…For this community‐engaged qualitative study, we used an adaptation of the Research by Affected Communities (RPAC) protocol, 20 altered to fit a professional conference setting, with the aim to engage a varied sample of perinatal nurses experienced in caring for pregnant and parenting individuals with OUD from across Washington state. Originally adapted from the James Lind Alliance's Framework and further adapted to focus on underrepresented communities, 20,21 the protocol consists of two 2‐hour focus group sessions: the first session is designed to support participants in the generation of relevant questions based on lived experiences. In the second session, participants rank and prioritize those questions 22 .…”

Maternal pre and perinatal experiences with their full-term, preterm and very preterm newborns

“…Further research addressing the temporal continuity of these early experiences, namely the impact of parental stress and early relationships on infants' development, is pivotal. For instance, although it is generally accepted that parental stress is influenced by infants' gestational age and weight at-birth, and particularly with pre-and perinatal complications [22], some parents remain fearful even in the absence of any health or developmental complications [86,87]. Moreover, in our future studies, we aim to include mothers from different backgrounds [88], as well as the fathers' perspective [89].…”

First, Do No Harm: Why Philanthropy Needs to Re-Examine Its Role in Reproductive Equity and Racial Justice

“…At the same time, the philanthropic sector would benefit from examining funding priorities, goals, and mechanisms in relationship to the power and potential for communities to drive knowledge construction, selfdetermination, community mobilization, and social transformation and policy reform, as defined research justice methodologies for social change. [8][9][10] Community harm then becomes the byproduct of philanthropic redlining, a discriminatory practice of inequitable distribution of philanthropic funds combined with neglect of justice-centered Black-led institutions, fueled by discriminatory notions that Black-led institutions are ineffective, inferior, and fraudulent. The consequence of historical philanthropic redlining is that as little as 8% of foundation funding goes to people of color, and 1% to the Black community, reinforcing the belief and practice that social change within the Black community must be led by white-governed institutions.…”