Stillbirth research: Recruitment barriers and participant feedback

Abstract

Background: Prioritisation of stillbirth research in high-income countries is required to address preventable stillbirth. However, concern is raised by ethics committees, maternity providers and families, when pregnant and bereaved women are approached to participate. Our aim was to 1) assess factors influencing recruitment in a multicentre case-control stillbirth study and 2) gain insight into how women felt about their participation.

Methods: Eligible women were contacted through maternity providers from seven New Zealand health regions in 2011-2015. Cases had a recent singleton non-anomalous late stillbirth (≥28 weeks' gestation). Controls were randomly selected and matched for region and gestation. Participants were interviewed by a research midwife and given a feedback form asking their views about participation. Feedback was evaluated using thematic analysis.

Results: 169 (66.5%) of 254 eligible cases and 569 (62.2%) of 915 eligible controls were recruited. Non-participants consisted of 263 (22.5% of eligible) women who declined, 108 (9.2% of eligible) uncontactable women, and 60 (5.1% of eligible) women declined by the maternity provider, with no significant differences between the proportion of non-participating cases and controls in each of these three categories. The majority (63.2%) of women did not provide a specific reason for non-participation. Written feedback was provided by 111 participants (cases 15.3%, controls 14.9%) and all described their involvement positively. Feedback themes identified were 'motivation to participate,' 'ease of participation,' and 'post-participation positivity.'

Conclusion: Identification of recruitment barriers and our reassuring participant feedback may assist women's participation in future research and support progress towards stillbirth prevention.

Keywords: Feedback; Pregnant women; Research participation; Research recruitment; Stillbirth.