All bereaved parents are entitled to good care after stillbirth: a mixed‐methods multicentre study (INSIGHT)

OBJECTIVE: To understand challenges in care after stillbirth and provide tailored solutions. DESIGN: Multi‐centre case study. SETTING: Three maternity hospitals. POPULATION: Parents with a stillborn baby, maternity staff. METHODS: Thematic analysis of parent interviews and staff focus groups and service provision investigation. OUTCOMES: 1 Themes; 2 Triangulation matrix; 3 Recommendations. RESULTS: Twenty‐one women, 14 partners, and 22 staff participated. Service Provision: Care for parents after stillbirth varies excessively; there are misconceptions; post‐mortem does not delay follow‐up. Presentation: Women ‘do not feel right’ before stillbirth; their management is haphazard and should be standardised. Diagnosis: Stillbirth is an emergency for parents but not always for staff; communication can seem cold; well‐designed bereavement space is critical. Birth: Staff shift priorities to mother and future, but for parents their baby is still a baby; parents are not comfortable with staff recommending vaginal birth as the norm; there are several reasons why parents ask for a caesarean; better care involves clear communication, normal behaviour, and discussion of coping strategies. Post‐mortem: Parents are influenced by discussions with staff. Staff should ‘sow seeds’, clarify its respectful nature, delineate its purpose, and explain the timescale. Follow‐up: It is not standardised; parents wish to see their multi‐professional team. CONCLUSIONS: There is unacceptable variation in care after stillbirth, and insensitive interactions between staff and bereaved parents. Understanding parents' needs, including why they ask for caesarean birth, will facilitate joint decision‐making. Every bereaved parent is entitled to good, respectful care. TWEETABLE ABSTRACT: Care too varied & interactions often insensitive after stillbirth; national pathway & training urgently needed PLAIN LANGUAGE SUMMARY: WHY AND HOW WAS THE STUDY CARRIED OUT? Previous studies have shown that improving care after stillbirth is important for families. We investigated the opinions of bereaved parents and maternity staff to find ways to improve care. At three hospitals in 2013, all women who experienced a stillbirth were invited to an interview along with their partners. Thirty‐five parents of 21 babies agreed to participate. Twenty‐two obstetricians and midwives took part in focus group discussions. WHAT WERE THE MAIN FINDINGS? Care was often not as good as it should and could be. Communication with parents was not always as sensitive as they would have liked because staff did not have appropriate training. Some women reported they did not ‘feel right’ before going to hospital. Once they arrived, there was no standard approach to how care was given. Sometimes there were long delays before the death of the baby was confirmed and action was taken. After it had been confirmed that the baby had died, staff focussed on the mothers’ needs, but the parents’ priorities were still with their baby. There were several reasons why parents asked for a caesarean birth that staff had not considered. Staff influenced parents’ decisions about post‐mortem examinations. Parents found it helpful when staff explained the respectful nature and purpose of the examination. After discharge from hospital, there was no consistent plan for how follow‐up care would be given. Parents would have liked more information about their next hospital appointment. WHAT ARE THE LIMITATIONS OF THE WORK? The parents interviewed depended on their memories of the details of the care, which happened some time ago. In staff group discussions, junior doctors may not have spoken openly because there were senior doctors present. Further research is necessary to understand and improve care globally. WHAT IS THE IMPLICATION FOR PARENTS? Every bereaved parent is entitled to the best possible care after stillbirth, but some do not get good care. Parents and staff made suggestions that can help to develop processes for how care is given after stillbirth. These suggestions can also inform staff training, so that every single parent is treated respectfully and participates in decision making.