‘My baby and I counted’: Parents’ experiences of care before and after
stillbirth: framework analysis of an international survey
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