Assessing the Quality of Bereavement Care after Perinatal Death – Development and Piloting of a Questionnaire to Assess Parents’ Experiences

Understanding parents’ experience of care is essential to develop high-quality perinatal bereavement services. This study aimed to develop a questionnaire to identify parents’ needs and record their experience of care. The patient experience questionnaire was developed by professionals and parents and piloted in a tertiary maternity unit. Responses were received from 58 parents. Sensitivity and kindness of staff and time spent with their baby were ranked as “very important” by 95% of parents. Care in these areas largely met their needs (90%), although 5% of respondents stated that partners could have been more involved. Between 8-15% of respondents did not feel that language used at the diagnosis of fetal death was sensitive, clear and unambiguous. Parents did not always receive written information about their care (5%) or post-mortem (13%). Analysis of bereaved parents’ responses identified areas for improvement including greater involvement of partners and a need for timely information.