loading page

‘My baby and I counted’: Parents’ experiences of care before and after stillbirth: framework analysis of an international survey
  • +5
  • Bethany Atkins,
  • Fran Boyle,
  • Emma Sacks,
  • Dell Horey,
  • Claudia Ravaldi,
  • Alfredo Vannacci,
  • Vicki Flenady,
  • Hannah Blencowe
Bethany Atkins
University College London Elizabeth Garrett Anderson Institute for Women's Health
Author Profile
Fran Boyle
The University of Queensland Institute for Social Science Research
Author Profile
Emma Sacks
Johns Hopkins University Department of International Health
Author Profile
Dell Horey
La Trobe University Department of Public Health
Author Profile
Claudia Ravaldi
Universita degli Studi di Firenze Scuola di Psicologia
Author Profile
Alfredo Vannacci
Universita degli Studi di Firenze Scuola di Psicologia
Author Profile
Vicki Flenady
Mater Research Institute The University of Queensland
Author Profile
Hannah Blencowe
London School of Hygiene & Tropical Medicine Centre for Maternal Adolescent Reproductive and Child Health

Corresponding Author:[email protected]

Author Profile

Abstract

Objective Explore parents’ experiences of care before and after stillbirth to identify potential areas for improvement. Design Internet-based survey of parents distributed via International Stillbirth Alliance networks. Setting Global. Population or Sample 2488 parents with a stillborn baby in the previous 5 years Methods Framework analysis of free-text responses, using an a priori framework developed from global respectful maternity care rights and guidelines. Main Outcome Measures Self-reported experience of care Results Four major themes arose: compassionate communication and shared decision making; respect for individuality, autonomy and legal rights; competent staff, facilities, and care systems; and holistic support. Many parents reported individualised, compassionate, and high-quality care, with synergistic community support. Negative experiences involved paternalistic or disrespectful care. Commonly parents felt that not enough information about stillbirth prevention had been provided. Conclusions Bereaved parents want supportive healthcare providers who listen to them, provide information and treat them with kindness and respect. Parents do not want, or expect, all care to come from healthcare providers. Intersection of healthcare with community, charities and spiritual support is important. The option of legal registration and naming of the stillborn baby is important to many parents. Funding The Centre of Research Excellence in Stillbirth (Stillbirth CRE) at the Mater Research Institute, The University of Queensland, Australia funded the survey. The National Health and Medical Research Council (NHMRC) provides core funding to the Stillbirth CRE. Keywords Stillbirth, stillborn, perinatal loss, intra-uterine death, perinatal bereavement, online survey, qualitative, respectful care