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ISDM Conference – AMH Randomised Trial Abstract
118 Communicating cardiovascular disease risk with women who have a history of pregnancy complications and loss
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  1. Bec Jenkinson1,
  2. Sheleigh Lawler1,
  3. Philippa Middleton2,
  4. Carissa Bonner3,
  5. Eileen Cooke4,
  6. Leah Hardiman5,
  7. Ayme Limmer5,
  8. Melanie Mckenzie6,
  9. Sam Payne7,
  10. Anna-Lee Ura8,
  11. Valerie Charlton9,
  12. Jenny Doust1,
  13. Gita Mishra1
  1. 1School of Public Health, University of Queensland, Brisbane, Australia
  2. 2South Australian Health and Medical Research Institute, Adelaide, Australia
  3. 3School of Public Health, University of Sydney, Sydney, Australia
  4. 4Preterm Infants Parents Association, Brisbane, Australia
  5. 5Maternity Consumer Advocate, Brisbane, Australia
  6. 6Harrison’s Little Wings, Brisbane, Australia
  7. 7Pink Elephants Network, Sydney, Australia
  8. 8Australasian Birth Trauma Association, Gold Coast, Australia
  9. 9Australian Action on Pre-eclampsia, Sydney, Australia

Abstract

Introduction Around 20–30% of pregnant women experience pregnancy complications and loss (PCL), such as hypertensive disorders in pregnancy, gestational diabetes, miscarriage or stillbirth. A history of PCL can provide an early warning of subsequent increased risk of cardiovascular disease (CVD). Communicating CVD risk with women in the years after PCL depends on transparency around the limitations of current evidence, emphasising the universality of preventive health messages and translating research findings into information that is meaningful to a broad audience. People with lived experience have rarely been involved in the design of interventions to raise awareness of CVD prevention following PCL.

Methods A participatory, qualitative approach that engaged a Lived Experience Expert (n=7) group to codesign a series of virtual workshops with women with a history of PCL (anticipating n=48–80).

Results The presentation will describe the process and outcomes of the codesign process, including the design of the resultant workshops to elicit women’s views, preferences and experiences of preventive healthcare in the months and years after PCL. Key ingredients of success as well as challenges will be discussed.

Discussion Researchers and people with lived experience have competing needs and preferences for risk communication. By prioritising women’s preferences, risk communication can avoid unintentionally adding to a stigmatising and victim blaming view of PCL.1 Authentically involving people with lived experience can inform possible future research, intervention design and dissemination strategies. Such involvement is valued by people with lived experience and may lead to the new research priorities, more appropriate patient education resources or preventive health pathways.

Conclusion(s) Close collaboration with patient advocates can produce meaningful risk information that is both faithful to research findings and appropriate to people with lived experience of PCL.

Reference

  1. Quigley P. Infertility, recurrent pregnancy loss, and risk of stroke: engage people with lived experience for more sensitive communication. BMJ 2022;379:o2821. DOI: 10.1136/bmj.o2821.

https://doi.org/10.1136/bmjebm-2024-SDC.117

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