A systematic literature review on how consumer and community involvement have shaped and influenced pre-pregnancy care interventions for women with diabetes.

Background: Diabetes and pregnancy studies have found better outcomes when interventions were developed with consumer (individuals with lived experience of diabetes) and community involvement. When consumers are central to development and delivery of interventions, study participants have better engagement and outcomes, particularly for individuals from culturally and linguistically diverse (CALD) and/or lower socio-economic backgrounds. Our study aims to examine the scope of consumer and community involvement (CCI) in the construction and implementation of pre-pregnancy care (PPC) interventions and discuss a framework for consumer-lead intervention development.

Methods: A systematic literature review was conducted, examining 3 electronic databases. A meta synthesis analysis of tabulated data summarized in a literature matrix was undertaken with a phenomenological approach to develop a Pre-Pregnancy Care CCI-Driven Intervention Framework.

Results: Overall, 4642 papers were identified, with 29 meeting inclusion criteria. The meta-synthesis and literature matrix identified several common themes across previous studies. These were: barriers to accessing (PPC) such as negativity and stigma in care from behaviours, attitudes and perceptions of HCPs; limited appointment availability not aligning with work and family 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 with recommendations.

Conclusion: Consumers have been under-involved in the majority of previous developments and implementation of interventions for women with diabetes and pregnancy, and their representation as stakeholders in interventions is paramount to the longevity of intervention outcomes. 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.