Oral Presentation International Association of the Diabetes and Pregnancy Study Groups 2022 - Hosted by ADIPS

Consumer Perspectives of Diabetes and Pregnancy: how consumers and community shape and influence interventions for women with diabetes (#56)

Rachel R Hicks 1 , Freya MacMillan 1 , Tinashe Dune 1 , David Simmons 1 2
  1. Western Sydney University, Campbelltown, NEW SOUTH WALES, Australia
  2. Endocrinology, Campbelltown and Camden Hospitals, Campbelltown, NSW, Australia

Diabetes and pregnancy studies have found better outcomes when interventions were developed with consumer involvement. When consumers are central to development and delivery of interventions, study participants have better engagement and outcomes, particularly for culturally and linguistically diverse (CALD) and/or lower socio-economic people. Women with pre-existing diabetes planning pregnancy place a higher value on recommendations from peers, demonstrating the value consumers place on community engagement during pregnancy journeys. We discuss how consumer perspectives and community engagement throughout policy/practice and intervention research development delivers better outcomes and strengthens HCPs and consumer ties in advocating for better health.

A systematic literature review was conducted on consumer involvement and women’s perspectives in pre-existing diabetes and pregnancy interventions to identify common themes across studies. These were: barriers to accessing pre-pregnancy care (PPC) such as negativity and stigma in care from behaviours/attitudes/perceptions of HCPs and limited appointment availability not aligning with work/life commitments; fear of losing a “normal” pregnancy journey; awareness of risk but unwillingness to discuss if consumers have not established trust with HCPs;  inaccessibility to CALD appropriate PPC and contraception; and digitisation of PPC information resources including peer support and social media. From these results, a PPC Consumer-Driven Intervention Framework for Women with Pregestational Diabetes was developed consisting of:

1) Consumers as active stakeholders, with representation in all components and renumeration to acknowledge lived experience & knowledge contributions

2) Improved communication methods, including appropriate empowering language and messages

3) Greater and earlier information and accessibility on contraception options (linkage with transition clinics)

4) Digital intervention methods, with apps and podcasts (e.g. MamaBetes – consumer-created showcasing lived experience)

5) Peer support and social media integration (formalised linkages with existing/new Facebook and Twitter diabetes communities)

An example of a consumer-led initiative we have established with this framework in mind but for Gestational Diabetes Mellitus will be provided:

  • Community Engagement Event: Opportunity open to consumers to share perceptions and experiences on GDM criteria, who should deliver a GDM diagnosis, using what words, how the message should be delivered and what supports for women and  families are important. Findings can inform GDM-tailored intervention frameworks and service models.

To assist community involvement in diabetes pregnancy intervention design and delivery we created a new framework, for improving clinical and social outcomes in healthcare, empowering relationships between HCPs and consumers, and highlighting the value of lived experience and women-centred care for increased community engagement.