This study, led by Dr Ghazala Mir, aimed to explore professional and community support for maternal and infant health in a range of ethnic and social groups.
Social network analysis and participatory research were used to explore the extent and nature of women’s personal and formal relationships and strategies for addressing inequalities within and between these groups.
The study raised important ethical issues about research with women who have experienced an infant death. Methods were informed by the Social Research Ethics guidance recommendations, which promote the use of participatory research with vulnerable groups.
The project was reviewed by the South Yorkshire National Research Ethics Service Committee. Ethical issues were discussed extensively with research partners, in the development of the study and throughout the project.
A detailed protocol was developed to ensure involvement in the research did not add to participants’ distress and that support was in place for women who became distressed during the study.
The protocol dealt with issues relating to: the period of bereavement that was acceptable prior to requesting participation in the study, distress caused by participation, support offered to participants, and training for researchers on bereavement research and dealing with distress.
Privacy and autonomy
Potential participants were recruited by healthcare staff and a community-based professional through her professional and personal networks, rather than directly by researchers.
Trusted professional provided potential participants with an information sheet, detailing the purpose, procedures and expected outcomes of the research along with the risks, benefits and alternatives to taking part and details about where to access further information or make a complaint.
We sought to empower individuals to make a voluntary informed decision, without any coercion, about whether or not to participate in the research, based on culturally appropriate information in relevant languages and formats.
Researchers’ use of participatory methods bridged relationships between project development groups (‘HOPE’ groups) and professional partners, with a primary concern for bereaved women’s empowerment.
Feedback suggested that training for women in the group on participatory methods would have clarified the role of the researcher to facilitate discussion and support decisions by participants, rather than to take control over suggestions by group members. The feedback also suggested that the dynamics of decision making within participatory groups needs discussion and agreement.
Many healthcare professionals engaged positively and enthusiastically with the groups, but there were some contexts in which women and researchers experienced defensive and sometimes hostile responses from policymakers and practitioners – the inclusion of one particular group member who faced child protection issues was questioned by some professionals and other women in the Hope groups.
Researchers used their knowledge of participatory approaches to convince these individuals of the need to ensure the group was inclusive of all bereaved women who wished to take part and was consistent in challenging social exclusion.
- Participatory methods are an empowering way of helping women from marginalised groups to have a voice in how health and social care services are run. The study has shown that partnership with groups like HOPE is feasible and can have a considerable impact on service development
- Groups should be established on a long-term basis with links to influential policymakers and practitioners who can make change happen as this is a key motivating factor for women
- Support needs to be available from the time such groups are established. Where existing bereavement support groups are not accessible, suitably qualified individuals could be made available and provide support in parallel with the group activity
- Consider providing training for women involved in the groups, for example in participatory methods and facilitator boundaries, negotiation and collaboration skills
- There is a need to check how people feel about group activity at regular intervals. Group members should also be offered the opportunity for individual feedback if they would prefer this
- Ongoing use of data: Although transcripts were anonymised, the transcribers should have been instructed on how to do this consistently before data archiving
Last updated: 27 June 2022