'Moving towards understanding', acceptability of investigations following stillbirth in sub-Saharan Africa: A grounded theory study

TY - JOUR

T1 - 'Moving towards understanding', acceptability of investigations following stillbirth in sub-Saharan Africa

T2 - A grounded theory study

AU - Bedwell, Carol

AU - Danna, Valentina Actis

AU - Lyangenda, Kutemba

AU - Tuwele, Khuzuet

AU - Kuzenza, Flora

AU - Kimaro, Debora

AU - Shayo, Happiness

AU - Petross, Chisomo

AU - Chisuse, Isabella

AU - Heazell, Alexander

AU - Victor, Suresh

AU - Vwalika, Bellington

AU - Lavender, Tina

N1 - Funding Information: This research was funded by the National Institute for Health Research (NIHR) (16/137/53), a major funder of global health research and training, using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care. Funding Information: The authors would like to acknowledge the country leads (Dr Rose Laisser, Professor Angela Chimwaza and Mrs Chowa Tembo Kasengele) for their hard work and commitment to delivering this study; the CEI groups for their time and input in shaping the research; and the participants who freely gave up their time to share their views and experiences. Publisher Copyright: © 2022 The Authors. BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd.

PY - 2023/1

Y1 - 2023/1

N2 - OBJECTIVE: To explore the views of women, partners, families, health workers and community leaders of potential investigations to determine the cause(s) of stillbirth, in Malawi, Tanzania and Zambia.DESIGN: Grounded theory.SETTING: Tertiary facilities and community settings in Blantyre, Malawi, Mwanza, Tanzania and Mansa, Zambia.SAMPLE: Purposive and theoretical sampling was used to recruit 124 participants: 33 women, 18 partners, 19 family members, 29 health workers and 25 community leaders, across three countries.METHODS: Semi-structured interviews were conducted using a topic guide for focus. Analysis was completed using constant comparative analysis. Sampling ceased at data saturation.RESULTS: Women wanted to know the cause of stillbirth, but this was tempered by their fear of the implications of this knowledge; in particular, the potential for them to be blamed for the death of their baby. There were also concerns about the potential consequences of denying tradition and culture. Non-invasive investigations were most likely to be accepted on the basis of causing less 'harm' to the baby. Parents' decision-making was influenced by type of investigation, family and cultural influences and financial cost.CONCLUSIONS: Parents want to understand the cause of death, but face emotional, cultural and economic barriers to this. Offering investigations will require these barriers to be addressed, services to be available and a no-blame culture developed to improve outcomes. Community awareness, education and support for parents in making decisions are vital prior to implementing investigations in these settings.

AB - OBJECTIVE: To explore the views of women, partners, families, health workers and community leaders of potential investigations to determine the cause(s) of stillbirth, in Malawi, Tanzania and Zambia.DESIGN: Grounded theory.SETTING: Tertiary facilities and community settings in Blantyre, Malawi, Mwanza, Tanzania and Mansa, Zambia.SAMPLE: Purposive and theoretical sampling was used to recruit 124 participants: 33 women, 18 partners, 19 family members, 29 health workers and 25 community leaders, across three countries.METHODS: Semi-structured interviews were conducted using a topic guide for focus. Analysis was completed using constant comparative analysis. Sampling ceased at data saturation.RESULTS: Women wanted to know the cause of stillbirth, but this was tempered by their fear of the implications of this knowledge; in particular, the potential for them to be blamed for the death of their baby. There were also concerns about the potential consequences of denying tradition and culture. Non-invasive investigations were most likely to be accepted on the basis of causing less 'harm' to the baby. Parents' decision-making was influenced by type of investigation, family and cultural influences and financial cost.CONCLUSIONS: Parents want to understand the cause of death, but face emotional, cultural and economic barriers to this. Offering investigations will require these barriers to be addressed, services to be available and a no-blame culture developed to improve outcomes. Community awareness, education and support for parents in making decisions are vital prior to implementing investigations in these settings.

UR - https://www.scopus.com/pages/publications/85140104567

U2 - 10.1111/1471-0528.17319

DO - 10.1111/1471-0528.17319

M3 - Article

C2 - 36209462

SN - 1470-0328

VL - 130

SP - 59

EP - 67

JO - BJOG

JF - BJOG

IS - 1

ER -