Evidence‐based priorities of under‐served pregnant and parenting adolescents: addressing inequities through a participatory approach to contextualizing evidence syntheses

Abstract

Purpose This study describes an interdiscursive evidence-based priority setting process with pregnant and parenting adolescents and their services providers. Methods A mixed methods literature review identified studies reporting on perinatal outcomes and experiences of adolescents during pregnancy to 12 months post-partum published in Canada after 2000. We also calculated relative risks for common perinatal risk factors and outcomes for adolescents compared to adult populations from 2012 to 2017 based on data from a provincial database of maternal and newborn outcomes. Two trained peer researchers identified outcomes most relevant to their peers. We shared syntheses results with four service providers and 13 adolescent mothers accessing services at a community service organization, who identified and prioritized their areas of concern. We repeated the process for the identified priority issue and expanded upon it through semi-structured interviews. Results Adolescent mothers face higher rates of poverty, abuse, anxiety and depression than do adult mothers. Adolescents prioritized the experience of judgment in perinatal health and social services, particularly as it contributed to them being identified as a child protection risk. Secondary priorities included loss of social support and inaccessibility of community resources. The experience of judgment in adolescent perinatal health literature was summarized around: being invisible, seen as incapable and seen as a risk. Adolescent mothers adapted these categories, emphasizing organizational and social barriers. Conclusions Young marginalized women are disproportionately affected by inequities in perinatal outcomes, yet their perspectives are rarely centered in efforts to address these inequities. This research addresses health inequities by presenting a robust, transparent and participatory approach to priority setting as a way to better represent the perspectives of those who carry the greatest burden of health inequities in evidence syntheses. In our work, marginalized adolescent parents adapted published literature around the experience and consequences of social stigma on perinatal outcomes, shifting our understanding of root causes and possible solutions.

How do we best engage young people in decision-making about their health? A scoping review of deliberative priority setting methods

“…Studies that included young people in all stages of the decision-making and prioritisation process were felt to provide the maximum opportunity and respect for the contributions of young people. This included respecting the anonymity of the young people’s stories [ 55 ], giving a young people’s council the opportunity to provide ongoing insights for an acute hospital trust and involving them extensively in the evaluation of impact and in publication of papers [ 49 ]. Most studies did not say if young people were given the opportunity to challenge the decision making process, which Abelson considers important as an indicator of mutual respect [ 40 ].…”

“… • The youth council advised on thedesign of questionnaires and surveys, developed a Bedside Booklet for the adolescent unit, Trust website, FamilyTalk (communication about conditions with young people), and posters to attract young people in research • This is a long-term commitment which is successful with reward mechanisms, capacity building and creative approaches. 15 Dion et al 2021 [ 55 ] Qualitative study with peer researchers Step 1: Working with Peer researchers to identify participant Step 2: Setting up focus groups with peer researchers. Step 3: Converting evidence synthesis to user friendly infographics with peer researchers Step 4:Allow young people to engage with the material.…”

Weight of Evidence: Participatory Methods and Bayesian Updating to Contextualize Evidence Synthesis in Stakeholders’ Knowledge

“…These are all critical questions that shape how evidence syntheses contribute to the translation of evidence into practice and decision making ( Barkham & Mellor-Clark, 2003 ; Booth et al, 2019 ; MacDermid & Graham, 2009 ). While our pilot application of Weight of evidence did not include stakeholders in setting the question for the evidence synthesis, subsequent application of this method included an evidence-based participatory approach to the initial problem definition ( Dion et al, 2021 ).…”

Fuzzy cognitive mapping in participatory research and decision making: a practice review

“…One literature map and three stakeholder maps, 5 participants 6. Experience of judgement of pregnant and parenting adolescents in Ottawa [34] Maps helped to summarise and discuss with stakeholders the results of a mixed-methods literature review on perinatal outcomes and experiences of adolescents during pregnancy to identify priority areas of concern…”