Learning from deaths: Parents’ Active Role and ENgagement in The review of their Stillbirth/perinatal death (the PARENTS 1 study)

This is a report of a semi-structured focus group discussion of bereaved parents with diverse experience of pregnancy neonatal loss and their views about parental involvement in the PNMR process. This study was supported by the Stillbirth and Neonatal Death Charity (Sands) and the University of Bristol. The topic guide covered four main areas including thoughts on the current PNMR process; views on how could parents contribute and improve the PNMR process; what would be the best method of feedback following PNMR process and views about an initial letter that would be sent to parents following their pregnancy or neonatal loss from Sands and Department of Health.

The focus group discussion was conducted in 2015 in South West England. We sampled women and their partners who had a lived personal experience of a perinatal death more than 6 months prior to the study. A purposive sampling technique was used to recruit a diverse sample of women and their partners who had a range of experience of perinatal death. Participants were identified via a key informant who is a bereaved parent and co-investigator (Storey), the local Bristol Sands support group, and the International Stillbirth Alliance. Recruitment took place after the co-investigator had telephone called or emailed and enquired whether they or others might be interested. Following this, study information was sent out to interested contacts and they subsequently decided whether to participate or not. Participants were recruited if they had experienced a mid-trimester loss (from 12 to 24 weeks of gestation), a termination of pregnancy for congenital abnormality, a stillbirth (between 24 and 42 weeks of gestation), or a neonatal death (from birth until 28 days postnatal). Further demographic information about participants has not been disclosed in this report as we do not want to compromise anonymity due to the relatively small numbers and geographical area have recruited from.

This study had ethical approval from the University of Bristol Faculty of Medicine and Dentistry Committee for Research Ethics (Reference 131,452 (11262), 17 October 2014). Written consent was obtained from all participants of the study.

The focus group discussion took place in a small private conference room in a neutral venue outside of hospital premises. Participants were given an information sheet prior to the study and written consent was obtained from those who wished to participate. A male consultant obstetrician and clinical researcher (Siassakos) experienced at qualitative research with bereaved parents, conducted the focus group discussion and guided participants through the session, together with a female co-investigator with personal experience of perinatal death (Storey) and of supporting bereaved parents, in case any participant experienced any emotional difficulties during the focus group discussion. The overall aim of the focus group discussion was to explore parental perceptions and expectations of the perinatal mortality review process; how they would like to contribute to this process and how as parents would like to receive feedback. The focus group discussion lasted two and a half hours and followed a specified schedule (see Additional file 1); an introduction and scene setting; discussion of current process; improvements and thoughts on parental involvement; receiving feedback; thoughts about a preformatted invite letter; and summarisation. Two female medical student co-facilitators (Yoward, Jones) were present to moderate the focus group discussion, keep field notes and produce an observational log of participant behaviour. These notes were used to help triangulate codes in the data analysis of the transcript. The focus group discussion was audio-recorded with a digital recorder.

The data were fully transcribed and analysed after the focus group discussion. A summary of the transcripts was sent to participants. Two researchers (Siassakos, Storey) carried out coding and identified key themes within the transcript. The thematic analysis followed a six-stage process: familiarisation with the data; generation of initial codes; searching for themes; reviewing themes; defining themes, and naming themes [10]. An interim analysis was performed with input from the wider study group to establish emerging themes. A final report was produced adhering to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist for qualitative interviews and focus group discussions [11].

From the outset, a bereaved parent has been involved in all aspects of study including focus group discussion design, development of study documents for recruitment and consenting participants, ethical approval, the project advisory board, analysis and interpretation of data and co-authorship of this manuscript [12].

Most participants were unaware that a formal perinatal mortality review process took place after the death of a baby. Several had postnatal appointments with consultants however they were not made aware of a review meeting taking place.

‘I don’t know what was discussed about my son, and after all he is my son, I should know what you know what’s happened? What’s been talked about him? And I mean you know what’s been talked about with your child at school so why should you not know what’s been talked about your son even after he’s dead.’

Participants wanted a clear process and reassurance that the same thing would not happen again to other parents if a preventable cause was found. They wanted to know what changes will be implemented following their loss and they wanted documented accountability in the process.

‘What will change as a result of my son dying so that another child doesn’t die of the same thing?’

All participants wanted to know when the perinatal mortality review process was taking place and to have the lessons learned clearly communicated to them. Parents communicated varied levels of dissatisfaction with the current process.

‘To me there is something fundamentally wrong, at no point did someone give us a piece of paper saying we’re really sorry your child has died and this is how we investigate it.’

The participants expressed the view that parental input to the review process should be optional and flexible; some parents did not wish to be involved initially but to have the option to contribute to the review or learn about its conclusions later. Some participants felt they may not have been able “to handle it” immediately due to the initial shock of the death. Others felt that it was important to carry out the review soon after the event so that it was “fresh” in the healthcare professionals’ minds. Participants felt that what they would have said straightway after the death would be different to how they felt about it now, months or over a year later.

‘I wanted to know the medical stuff straight away … but emotionally I would have had different things to say about the care I had a year later.’

During the focus group discussion participants were given a formatted letter that could initially be sent to parents following their pregnancy or neonatal loss. This letter has been developed by the Sands and DoH task group. They were asked about their views of the letter and its contents and about suggestions of ways to improve the letter. Participants thought that brief circumstance-specific information about the review should be included in discharge packs and discussions. Many participants felt that the letter should be personalized to their individual circumstance for example if the letter should be different depending on the circumstances of the loss, e.g. a letter regarding a stillbirth should differ from one that deals with a neonatal death.

‘We have got neonatal deaths, stillbirths terminations, does this letter cover all those eventualities or do we need a letter that is slightly tailored to each circumstance?’

Parents believed that some direction as to how parents might contribute to the process (e.g. example questions, a framework with subsections) would be useful, alongside an opportunity for free text input.

‘You could frame that review process down into subsections, so it was not just about questions and answers about why your baby died, I think if you have got other questions and you’re talking about the care from the hospital and talking about communication.’

Furthermore, several participants felt prior explanation of the proposed letter by a member of the healthcare team would be beneficial prior to discharge.

Participants believed the review process should capture both the clinical and emotional aspects of each case. For individual cases, such as a termination for fetal congenital anomaly, treatment may not have been different but emotional care could have been improved.

‘We understand why he is there, we understand what has gone wrong and understand why he has died… So it is more about the emotional side isn’t it?’

The overall opinion of the focus group discussion was that the review should have a whole team care approach by giving rise to important lessons learned for not just obstetric and/or neonatal care but also community care.

‘I did get a home visit from my GP but that was about it. So I would say the hospital did very well but then it stopped and that was where the care really needs to be looked at.’

One parent wanted to have assurance that obstetricians, midwives, neonatologists and community staff discussed the case together.

‘One of the key things for me, is also knowing that the different pathways … will get together and decide whether there was anything that we should’ve done differently… there are lots of people that are in your care.’

Continuity of pathways of care emerged as a recurring sub-theme within the analysis. This need for continuity of care and communication was felt to be required not only locally within hospitals but regionally.

‘Babies can go between lots of different hospitals … I have never got an answer to in years; is how much doctors actually talk to each other.’

Participants commented that the review should include positive aspects of care and comments for individual or team excellence.

‘It was just the consultant appointment and there wasn’t really an opportunity to say anything positive about the experience you know with regards to care or anything like that.’

Parents felt that getting answers would help to alleviate self-blame and reassure them that there is accountability following the death of a baby.

‘Being in a vacuum for nine weeks that was really hard because during that time you beat yourself up, blame yourself, make reason why it was your fault.’

This is the first-time parental opinion has been formally investigated in-depth on the PNMR process. We are not aware of any comparable studies within research area, but the key themes and sub-themes described reflect the wider literature on parents’ experience of stillbirth [3, 13, 14]. A systematic review published in 2016 found that parents would appreciate a healthcare system that provides support following discharge from hospital and also a follow up appointment that might resolve uncertainty [4].

For this study, we recruited a sample of women and their partners with a range of experience of pregnancy or neonatal loss. Although we have investigated the views of a diverse sample of parents in South West England, parents in other parts of the UK may express different views. Future research might be necessary, particularly with bereaved parents with diverse cultural, ethnic, and religious backgrounds.

Furthermore, we noted parents did not discuss the medico-legal implications of parental involvement in the PNMR process. This was perhaps because of this not being at the forefront of parents’ minds. Further research should explore healthcare professionals’ and stakeholders’ perceptions of parental involvement and what medico-legal implications this might entail. The medico-legal implications may also differ from country to country and therefore consideration needs to be made to this variation when interpreting any future findings.

We have been able to elucidate an aspect of perinatal death and the related hospital processes that had not been explored in depth before, yet was identified as critical for future health service improvement. Crucially, we explored this important issue together with a bereaved parent co-investigator who was integral to the study design, implementation and analysis of data.

Mounting evidence shows that care at and around the time of perinatal death can positively influence outcomes for parents [2, 13]. In other areas of healthcare, an inclusive approach with patients as active participants in their care has been shown to improve patient satisfaction and health care quality [15‐20]. Involving patients could play a role in improving future patient safety [21], because patients and families have a unique viewpoint and may be able to highlight errors unknown to the hospital and may be useful in improving future care [22]. Involving patients in understanding the sequence of traumatic and potentially life changing events they have experienced may help in the healing process [23]. The same principle might apply to maternity care for bereaved parents: their involvement might be similarly beneficial. However, it was important to understand the parents’ wishes first, before embarking of further research to explore the feasibility and acceptability of options for parental involvement.