Other Titles

Episteme Award Recipient 2025

Abstract

Parents who experience the loss of a baby through stillbirth or shortly after birth face deeply distressing and traumatic episodes. These experiences are often described as among the most painful in their lives. However, society often does not recognise the depth of this grief, leaving parents feeling isolated, stigmatised, and unsupported. Healthcare providers also fail to give adequate care to these parents and families. This study aims at developing a holistic cultural congruent bereavement care framework to support parents and families coping with the loss of a baby through stillbirth or after a neonatal loss in Uganda.

The study will employ a qualitative research design, utilising an interpretative phenomenological approach (IPA) to explore and understand the lived experiences of parents and families following stillbirth or after neonatal loss. In addition, the study will gather the perspectives of healthcare workers to provide a comprehensive understanding of the socio-cultural, economic, and systemic factors influencing bereavement care.

The study will be conducted in purposively selected healthcare facilities located in different regions of Uganda, including healthcare workers from maternity care units and parents or families who have experienced stillbirth and neonatal loss. The study will be conducted in 4 distinct phases.

Notes

References:

Ayebare, E., Lavender, T., Mweteise, J., Nabisere, A., Nendela, A., Mukhwana, R., Wood, R., Wakasiaka, S., Bedwell, C., Blaikie, K., Actis Danna, V., Sutton, C., Laisser, R., Tembo Kasengele, C., Wakasiaka, S., Victor, S., & Lavender, T. (2021). Understanding the complexities of unexplained stillbirth in sub‐Saharan Africa: a mixed‐methods study.

Fernández-Sola, C., Camacho-Ávila, M., Hernández-Padilla, J. M., Fernández-Medina, I. M., Jiménez-López, F. R., Hernández-Sánchez, E., Conesa-Ferrer, M. B., & Granero-Molina, J. (2020). Impact of perinatal death on the social and family context of the parents.

Mills, T. A., Ayebare, E., Mukhwana, R., Mweteise, J., Nabisere, A., Nendela, A., Ndungu, P., Okello, M., Omoni, G., & Wakasiaka, S. (2021). Parents' experiences of care and support after stillbirth in rural and urban maternity facilities: a qualitative study in Kenya and Uganda.

Mills, T. A., Ayebare, E., Mweteise, J., Nabisere, A., Mukhwana, R., Nendela, A., Omoni, G., Wakasiaka, S., & Lavender, T. (2023). ‘There is trauma all round’: A qualitative study of health workers’ experiences of caring for parents after stillbirth in Kenya and Uganda.

Description

Sigma Theta Tau International Honor Society of Nursing (Sigma) has named Lilian Nuwabaine, PhD(c), MScN, BScN, as the 2025 Episteme Award recipient. Each biennium, the Episteme Award recognizes a nurse scientist or team of nurse scientists whose work has resulted in a breakthrough in nursing knowledge development that has a profound impact on an underserved population in nutrition/malnutrition, clean water and sanitation, or diabetes prevention. This award is supported by the Baxter Foundation.

Author Details

Lilian Nuwabaine, PhD(c), MScN, BScN

This year’s Episteme Laureate has dedicated her career to researching, innovating, and educating with an aim to providing the best care for mothers and children in Rwanda, Kenya, Sierra Leone, and her native Uganda. She has published more than 20 articles in high-impact journals focusing on reproductive, maternal, newborn, and adolescent health. Her innovative project, “The Nutrition and Wellness Hub” has assisted thousands of people in underserved communities, equipping them with up-to-date, evidence-based nutrition and wellness information, nutritional assessments, and appropriate interventions. Her vision has been to empower the community to become champions of nutrition advocacy, health promotion, nutrition education, and disease prevention.

As a midwife, Lilian has touched the lives of hundreds of women in under-resourced communities. She is also passionate about educating the next generation of midwives and nurses. Through Aga Khan University, she is an accredited continuous professional development provider and has conducted trainings that have reached thousands of nurses and midwives across Uganda. Additionally, her project “Your Nurse and Midwife on Air” aims to raise the profile of nursing in Uganda and beyond through social media, collaborations and partnerships, and training in advocacy and policy involvement.

“Lilian Nuwabaine is an outstanding researcher, innovator, and educator whose exceptional work has improved the lives of thousands of women and children,” said Sigma President Sandra C. Garmon Bibb, DNSc, RN, FFNMRCSI, FAAN. “On behalf of Sigma members worldwide, and the Sigma Board of Directors and staff, huge congratulations to Ms. Nuwabaine on receiving the 2025 Episteme Award.”

Sigma Membership

Alpha Beta Upsilon at-Large

Type

Presentation

Format Type

Text-based Document

Study Design/Type

Phenomenology

Research Approach

Qualitative Research

Keywords:

Stillbirth, Bereavement, Uganda

Conference Name

48th Biennial Convention

Conference Host

Sigma Theta Tau International

Conference Location

Indianapolis, Indiana, USA

Conference Year

2025

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Rights Holder

All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.

Review Type

Abstract Review Only: Reviewed by Event Host

Acquisition

Proxy-submission

Date of Issue

2025-11-04

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A Holistic Culturally Congruent Bereavement Care Framework for Parents and Families After Stillbirth and Neonatal Loss in Uganda

Indianapolis, Indiana, USA

Parents who experience the loss of a baby through stillbirth or shortly after birth face deeply distressing and traumatic episodes. These experiences are often described as among the most painful in their lives. However, society often does not recognise the depth of this grief, leaving parents feeling isolated, stigmatised, and unsupported. Healthcare providers also fail to give adequate care to these parents and families. This study aims at developing a holistic cultural congruent bereavement care framework to support parents and families coping with the loss of a baby through stillbirth or after a neonatal loss in Uganda.

The study will employ a qualitative research design, utilising an interpretative phenomenological approach (IPA) to explore and understand the lived experiences of parents and families following stillbirth or after neonatal loss. In addition, the study will gather the perspectives of healthcare workers to provide a comprehensive understanding of the socio-cultural, economic, and systemic factors influencing bereavement care.

The study will be conducted in purposively selected healthcare facilities located in different regions of Uganda, including healthcare workers from maternity care units and parents or families who have experienced stillbirth and neonatal loss. The study will be conducted in 4 distinct phases.