Reviewing outside the office: involving women with young children in systematic reviews

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (5)

Date: 

Sunday 16 September 2018 - 16:20 to 16:40

Location: 

Carrick 2

All authors in correct order:

Boddy K1, Salmon V1, Cockcroft E1, Hunt H1, Thompson Coon J1, Wakely L2, Jarvie R1, Dean S1, Pearson M3, Liabo K1
1 University of Exeter Medical School, United Kingdom
2 SNUG Service Manager and parent advisor to project, United Kingdom
3 Hull York Medical School, United Kingdom
Presenting author and contact person

Presenting author:

Kate Boddy

Contact person:

Kate Boddy
Abstract text
Background:
A key challenge many researchers face with public involvement in systematic reviews is finding people to take part. This can be especially true when the population of interest would not typically be available to attend board-room style meetings at a research centre.

Objectives:
We demonstrate how researchers were able to meaningfully involve women with children in two separate systematic reviews: APPEAL (Antenatal Preventative Pelvic floor Exercises And Localisation - delivery of pelvic floor muscle exercise education for women during pregnancy) and PaReNt (parent-to-parent support interventions for parents of babies cared for in a neonatal unit).

Methods:
In addition to using standard practices of good-quality public involvement (e.g. respecting each other's perspective, valuing people's time by offering payments etc.), we used a number of complementary approaches to ensure that women with children could become, and remain, involved in the reviews:

- Working with a community leader to establish needs and build trust.
- Using a community venue known and regularly visited by women.
- Actively welcoming children (e.g. using child-friendly settings).
- Using people's preferred communication methods (e.g. text message and Facebook).
- Investing time in planning short, focussed meetings.

Results:
In both projects planned-for group size (N = 5) was exceeded due to high interest from women. Children aged from just two weeks to three years were present at every meeting. Notable impacts from involvement include capturing additional terms for search strategies, identifying outcomes of interest, emphasising important themes and noting missing themes during qualitative analysis. Impacts were also evident beyond the research; one woman described the personal impact of involvement in the group and how it brought them closer together as friends.

Conclusions:
Impactful involvement can be achieved in systematic reviews by prioritising the needs of the target population. Researchers need to build time early on and throughout the review process to enable these needs to be recognised, established and acted upon.

Patient or healthcare consumer involvement:
We describe public involvement in two systematic reviews. The APPEAL group chose the language used to describe those involved. A member of the PaReNt group is included as a co-author.

Relevance to patients and consumers: 

This initiative reports on two systematic reviews that involved women with very young children as advisors. We involved the women, incorporating their perspectives into the research process, to ensure our research was relevant and important to them. Often research does not include patients/consumers and so opportunities to produce work that includes outcomes of interest to patients are lost. We hope to demonstrate approaches to involving women with young children in systematic review research and encourage other researchers to ensure their research is patient-focused.