Women’s experiences of being invited to participate in a case-control study of stillbirth-findings from the Midlands and North of England Stillbirth Study

Jayne Budd, Tomasina Stacey, Bill Martin, Devender Roberts, Alexander EP Heazell

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Background: The Midlands and North of England Stillbirth Study (MiNESS) was a case-control study of women who had a stillbirth or who had an ongoing pregnancy. During the set up phase questions were raised about whether interviewing women within six weeks of a stillbirth and recruiting women who were still pregnant into a “stillbirth” study was acceptable. This led to the research questions “whether it is appropriate to ask women who have recently experienced a stillbirth to participate in research?” and “whether it is appropriate to ask pregnant women to participate in a research project looking at factors associated with stillbirth.” This nested study aimed to describe the opinions of women approached to participate in MiNESS to explore their views and experiences of a research project focussed on stillbirth.
Methods: Semi- structured interviews were conducted at a single study site involved in MiNESS. Purposive sampling was used to obtain a sample of women who were approached following a stillbirth (case n = 6) and those who were approached during pregnancy who gave birth to a live born baby (control n = 6). These two groups of women were divided equally according to whether they participated in the main MiNESS questionnaire study and those who declined to do so (n = 3 in each group). Interview data were transcribed and analysed using thematic analysis to identify the most important factors in determining whether women participated in MiNESS.
Results: The following themes emerged from the analysis: participants’ understanding of research; approach by researcher; wanting to help; stillbirth taboo. These themes are explored individually in the manuscript. Participants reported positive views about research and previous participation in research studies. Respondents valued an initial
approach from a member of staff already known to them. The taboo around stillbirth was a barrier to participation for some women with ongoing pregnancies.
Conclusions: Experiences and views regarding research differed between participants and non-participants in the MiNESS study. Participants reported a greater understanding of the importance and implications of clinical research. When designing future studies, the timing of approach, clarity of information and the person approaching potential
participants should be considered to optimise recruitment.
Original languageEnglish
Article number317
Pages (from-to)1-8
Number of pages8
JournalBMC Pregnancy and Childbirth
Volume18
Early online date6 Aug 2018
DOIs
Publication statusPublished - 2018
Externally publishedYes

Fingerprint

Stillbirth
England
Case-Control Studies
Research
Taboo
Pregnancy
Interviews
Manuscripts

Cite this

@article{f6ca7960f1ea4e06a055362b50b84caa,
title = "Women’s experiences of being invited to participate in a case-control study of stillbirth-findings from the Midlands and North of England Stillbirth Study",
abstract = "Background: The Midlands and North of England Stillbirth Study (MiNESS) was a case-control study of women who had a stillbirth or who had an ongoing pregnancy. During the set up phase questions were raised about whether interviewing women within six weeks of a stillbirth and recruiting women who were still pregnant into a “stillbirth” study was acceptable. This led to the research questions “whether it is appropriate to ask women who have recently experienced a stillbirth to participate in research?” and “whether it is appropriate to ask pregnant women to participate in a research project looking at factors associated with stillbirth.” This nested study aimed to describe the opinions of women approached to participate in MiNESS to explore their views and experiences of a research project focussed on stillbirth.Methods: Semi- structured interviews were conducted at a single study site involved in MiNESS. Purposive sampling was used to obtain a sample of women who were approached following a stillbirth (case n = 6) and those who were approached during pregnancy who gave birth to a live born baby (control n = 6). These two groups of women were divided equally according to whether they participated in the main MiNESS questionnaire study and those who declined to do so (n = 3 in each group). Interview data were transcribed and analysed using thematic analysis to identify the most important factors in determining whether women participated in MiNESS.Results: The following themes emerged from the analysis: participants’ understanding of research; approach by researcher; wanting to help; stillbirth taboo. These themes are explored individually in the manuscript. Participants reported positive views about research and previous participation in research studies. Respondents valued an initialapproach from a member of staff already known to them. The taboo around stillbirth was a barrier to participation for some women with ongoing pregnancies.Conclusions: Experiences and views regarding research differed between participants and non-participants in the MiNESS study. Participants reported a greater understanding of the importance and implications of clinical research. When designing future studies, the timing of approach, clarity of information and the person approaching potentialparticipants should be considered to optimise recruitment.",
keywords = "Stillbirth, Research participation, Research recruitment",
author = "Jayne Budd and Tomasina Stacey and Bill Martin and Devender Roberts and Heazell, {Alexander EP}",
year = "2018",
doi = "10.1186/s12884-018-1956-1",
language = "English",
volume = "18",
pages = "1--8",
journal = "BMC Pregnancy and Childbirth",
issn = "1471-2393",
publisher = "BioMed Central",

}

Women’s experiences of being invited to participate in a case-control study of stillbirth-findings from the Midlands and North of England Stillbirth Study. / Budd, Jayne; Stacey, Tomasina; Martin, Bill; Roberts, Devender; Heazell, Alexander EP.

In: BMC Pregnancy and Childbirth, Vol. 18, 317, 2018, p. 1-8.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Women’s experiences of being invited to participate in a case-control study of stillbirth-findings from the Midlands and North of England Stillbirth Study

AU - Budd, Jayne

AU - Stacey, Tomasina

AU - Martin, Bill

AU - Roberts, Devender

AU - Heazell, Alexander EP

PY - 2018

Y1 - 2018

N2 - Background: The Midlands and North of England Stillbirth Study (MiNESS) was a case-control study of women who had a stillbirth or who had an ongoing pregnancy. During the set up phase questions were raised about whether interviewing women within six weeks of a stillbirth and recruiting women who were still pregnant into a “stillbirth” study was acceptable. This led to the research questions “whether it is appropriate to ask women who have recently experienced a stillbirth to participate in research?” and “whether it is appropriate to ask pregnant women to participate in a research project looking at factors associated with stillbirth.” This nested study aimed to describe the opinions of women approached to participate in MiNESS to explore their views and experiences of a research project focussed on stillbirth.Methods: Semi- structured interviews were conducted at a single study site involved in MiNESS. Purposive sampling was used to obtain a sample of women who were approached following a stillbirth (case n = 6) and those who were approached during pregnancy who gave birth to a live born baby (control n = 6). These two groups of women were divided equally according to whether they participated in the main MiNESS questionnaire study and those who declined to do so (n = 3 in each group). Interview data were transcribed and analysed using thematic analysis to identify the most important factors in determining whether women participated in MiNESS.Results: The following themes emerged from the analysis: participants’ understanding of research; approach by researcher; wanting to help; stillbirth taboo. These themes are explored individually in the manuscript. Participants reported positive views about research and previous participation in research studies. Respondents valued an initialapproach from a member of staff already known to them. The taboo around stillbirth was a barrier to participation for some women with ongoing pregnancies.Conclusions: Experiences and views regarding research differed between participants and non-participants in the MiNESS study. Participants reported a greater understanding of the importance and implications of clinical research. When designing future studies, the timing of approach, clarity of information and the person approaching potentialparticipants should be considered to optimise recruitment.

AB - Background: The Midlands and North of England Stillbirth Study (MiNESS) was a case-control study of women who had a stillbirth or who had an ongoing pregnancy. During the set up phase questions were raised about whether interviewing women within six weeks of a stillbirth and recruiting women who were still pregnant into a “stillbirth” study was acceptable. This led to the research questions “whether it is appropriate to ask women who have recently experienced a stillbirth to participate in research?” and “whether it is appropriate to ask pregnant women to participate in a research project looking at factors associated with stillbirth.” This nested study aimed to describe the opinions of women approached to participate in MiNESS to explore their views and experiences of a research project focussed on stillbirth.Methods: Semi- structured interviews were conducted at a single study site involved in MiNESS. Purposive sampling was used to obtain a sample of women who were approached following a stillbirth (case n = 6) and those who were approached during pregnancy who gave birth to a live born baby (control n = 6). These two groups of women were divided equally according to whether they participated in the main MiNESS questionnaire study and those who declined to do so (n = 3 in each group). Interview data were transcribed and analysed using thematic analysis to identify the most important factors in determining whether women participated in MiNESS.Results: The following themes emerged from the analysis: participants’ understanding of research; approach by researcher; wanting to help; stillbirth taboo. These themes are explored individually in the manuscript. Participants reported positive views about research and previous participation in research studies. Respondents valued an initialapproach from a member of staff already known to them. The taboo around stillbirth was a barrier to participation for some women with ongoing pregnancies.Conclusions: Experiences and views regarding research differed between participants and non-participants in the MiNESS study. Participants reported a greater understanding of the importance and implications of clinical research. When designing future studies, the timing of approach, clarity of information and the person approaching potentialparticipants should be considered to optimise recruitment.

KW - Stillbirth

KW - Research participation

KW - Research recruitment

UR - https://www.scopus.com/record/display.uri?eid=2-s2.0-85054932451&origin=resultslist&sort=plf-f&src=s&st1=Women%27s+experiences+of+being+invited+to+participate+in+a+case-control+study+of+stillbirth+-+findings+from+the+Midlands+and+North+of+England+Stillbirth+Study&st2=&sid=cf9f2b691c3ebc200a22983dbdf151a6&sot=b&sdt=b&sl=171&s=TITLE-ABS-KEY%28Women%27s+experiences+of+being+invited+to+participate+in+a+case-control+study+of+stillbirth+-+findings+from+the+Midlands+and+North+of+England+Stillbirth+Study%29&relpos=0&citeCnt=0&searchTerm=

U2 - 10.1186/s12884-018-1956-1

DO - 10.1186/s12884-018-1956-1

M3 - Article

VL - 18

SP - 1

EP - 8

JO - BMC Pregnancy and Childbirth

JF - BMC Pregnancy and Childbirth

SN - 1471-2393

M1 - 317

ER -