PS-052 Setting Preterm Birth Research Priorities With Multiple Professions And Service Users In The Uk

Uhm, S; Alderdice, FA; Brady, I; Chambers, B; Chivers, Zoe; Crowe, Sally; David, AL; Deshpande, Sanjeev; Gale, Chris; Gyte, Gillian ML; James, CP; Duley, Lelia; McNeill, Jenny; Shennan, AH; Turner, Mark A.; Oliver, Sandy

doi:10.1136/archdischild-2014-307384.349

Cited by 4 publications

(5 citation statements)

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“…A search of the current research literature demonstrates many areas of conceptual alignment between the priorities of women with lived experience of preterm birth risk and researchers in this field [38]. The findings share some similarities with previous findings from the James Lind Alliance preterm birth priority setting partnership in the United Kingdom [39]. However, the priorities of women of color were broader and included greater focus on the social determinants of health and a call for more research on interpersonal and structural health inequities.…”

Section: Discussionsupporting

confidence: 66%

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

Franck

McLemore

Williams

et al. 2020

BMC Pregnancy Childbirth

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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.

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Section: Discussionsupporting

confidence: 66%

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

Franck

McLemore

Williams

et al. 2020

BMC Pregnancy Childbirth

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“…Priority partnership initiatives focused on developing research priorities for preterm birth ( 14 ), miscarriage, and stillbirth ( 15 ) exist in the United Kingdom. Canadian health research funding bodies and organizations are including patient-oriented research as key components of both Federal—Canadian Institutes of Health Research (CIHR) and Provincial—Alberta Health Services (AHS) strategic plans.…”

Section: Introductionmentioning

confidence: 99%

Study Protocol: Determining Research Priorities of Young Albertan Families (The Family Research Agenda Initiative Setting Project—FRAISE)—Participatory Action Research

Bright

Ginn

Keys

et al. 2018

Front. Public Health

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Introduction: Pregnancy and childrearing can be an exciting and stressful time for new parents. The maternal-child health landscape has changed dramatically over the last few decades and research priorities need to address these rapid changes. There have been limited attempts to engage and collaborate with members of the public to develop research priorities for families who are expecting or parenting an infant to age 24 months. The work that has been completed has attempted to identify parental preference for information delivery and barriers to uptake of parenting programs but has not investigated parental research priorities.Methods: In collaboration with provincial research units and strategic clinical networks (SCN), we will use principles of participatory action research (PAR) as our theoretical framework/method, and a modified James Lind Alliance priority setting approach to prioritize a list of research questions that parents/knowledge users believe will support the health of their families. This will result in a top 10 list of parent/knowledge user-identified research priorities. This project will consist of three phases. In the first phase, we developed a steering committee of parents/knowledge users, healthcare providers, community agencies, and researchers to design a survey about health priorities for families. In the second phase, we will distribute the survey to diverse groups of parents/knowledge users/providers and hold a series of meetings to identify and prioritize potential questions from new parents about health issues from conception to age 24 months. In the third phase, we will collaboratively disseminate and translate findings.Discussion: This study will highlight parental health concerns and recommend parent-identified research priorities to inform future research projects needed to support the health of families between conception to age 24 months. Understanding the health research priorities of families in the community will help ensure future research contributes to meaningful changes in the health of young children, parents/knowledge users, and families.Ethics: This study and protocol have received ethical approved from the Conjoint Health Research Ethics Board at the University of Calgary (REB17-0014).Dissemination: The top 10 research priorities will be published and additional findings from the study will be distributed through pamphlets and newsletters.

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“…Improving support for mothers and fathers of preterm infants remains a priority for neonatal service provision (Uhm et al, 2014;Howell and Graham, 2011). P2P appears to offer promise in this area, but before it can be routinely considered further research needs to robustly assess potential harms (for those providing and receiving care), and to tackle the pragmatic issue of how to implement and support P2P in practice.…”

Section: Discussionmentioning

confidence: 99%

“…Improving support for parents of premature babies is an important priority for parents, carers, health care professionals and relevant charities. Two priorities identified at the 2014 James Lind Alliance Pre-Term Birth Priority Setting Partnership workshop (Uhm et al, 2014) relate to improving support for parents: what should be included in packages of care to support parents and families/carers when a premature baby is discharged from hospital; and what emotional and practical support improves attachment and bonding and whether the provision of such support improve outcomes for premature babies and their families. The Picker Institute National Survey conducted in 2011 (Howell and Graham, 2011) also highlighted the need for improvements in parental support, suggesting there needs to be more clarity about how best to support the parent and how parents can best interact with staff in the neonatal intensive care unit (NICU).…”

Section: Introductionmentioning

confidence: 99%

“They’ve walked the walk”: A systematic review of quantitative and qualitative evidence for parent-to-parent support for parents of babies in neonatal care

Hunt

Abbott

Boddy

et al. 2019

Journal of Neonatal Nursing

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PS-052 Setting Preterm Birth Research Priorities With Multiple Professions And Service Users In The Uk

Cited by 4 publications

References 0 publications

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

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

Study Protocol: Determining Research Priorities of Young Albertan Families (The Family Research Agenda Initiative Setting Project—FRAISE)—Participatory Action Research

“They’ve walked the walk”: A systematic review of quantitative and qualitative evidence for parent-to-parent support for parents of babies in neonatal care

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