Provision of bereavement care in neonatal units in the United Kingdom

To establish what bereavement care services are available in neonatal units in the United Kingdom and to establish the availability to staff (doctors, nurses, and chaplains) of bereavement education, training, communication, and multicultural support. For families who lose a baby in the neonatal period, the support they receive from hospital staff can be pivotal in their ability to cope with their grief. Hospital staff are not always trained to provide this support. Limited evidence is available regarding hospital-based bereavement care in neonatology or its impact on outcome.

Questionnaire survey of selected doctors, nurses, and chaplains in 200 neonatal units in the United Kingdom.

We had responses from 100% of neonatal units surveyed. Of 600 individuals, 320 responded; 11% of doctors had never received any formal training in bereavement care, compared with 0.8% of nurses and 1.2% and chaplains. In addition, 31% of respondents thought the training they received was inadequate. Knowledge of grief theorists was poor. Up to 99% of units were helping parents create memories through photographs or handprints. Parents were uniformly given the chance to be with their baby at the time of death (99% overall). Siblings were encouraged to be present 71% of the time; 75% of respondents felt that information about the needs of different faith groups was available. Formal psychological support was offered to 45% of families after bereavement.

Studies have shown that parents value clear communication, education about grieving, and demonstrated emotional support by staff. Our study has shown that there are deficiencies in staff training and education in this area. Educators must promote the inclusion of content on bereavement/end-of-life care. Additional education on cultural issues would be helpful. Managing the bereavement process well to minimize morbidity for families and healthcare providers is an important challenge for the future.