Table 1

GRIPP2 (Guidance for Reporting Involvement of Patients and the Public) short form checklist

Section and topicItemReported on page number
1. AimTo embed PPI into the stillbirth programme of work in sub-Saharan Africa2
2. MethodsWe recruited PPI participants through a snowball technique to groups in Kenya, Malawi, Tanzania, Uganda, Zambia and Zimbabwe. Training of both PPI group participants, PPI facilitators and researchers was required to clarify the purpose of PPI and the role of individuals within it. The groups needed to develop and skilled facilitators were key to this process.2–4
3. ResultsPPI involvement included the following contributions and impacts:
Providing understanding of cultural issues and context in the study areas
Advising on reaching potential participants
Making initial contact and introducing researchers to potential hard-to-reach participants
Providing advice on interview guides in terms of introducing the study and phrasing of questions
Reviewing and commenting on analysed results
Contributing to development of study interventions for the next phase of work
A PPI participant was invited to sit on each in-country stakeholder group to provide PPI input.
PPI groups held meetings in the local community to raise awareness of stillbirth.
4. Discussion and conclusionsThe integration of PPI within this programme of work has provided impact in terms of a demonstrable contribution to the programme in terms of recruitment, data collection and design of interventions. In addition, PPI groups have raised awareness of stillbirth, both locally and nationally. The membership of the groups has provided individuals with a sense of worth and empowerment, enabling them to develop their own skills and contributions to research.7
5. Reflections/critical perspectivePPI has been embedded into this ongoing programme of work. The groups are continuing to develop and provide additional input into the research process. Evaluation of the PPI groups and their contributions to the research process will be ongoing.7
  • PPI, patient and public involvement.