Aim
The aim of patient and public involvement (PPI) was to ensure that the voices of parents, families and babies were represented in OPTI-PREM.
Methods
Background (preparatory work)
We first undertook preparatory work with parents from the Midlands and followed this with recruitment of a definitive independent panel.
Recruitment to parent panel
Parents were recruited through BLISS. Parents were invited, though BLISS social media [Facebook (Facebook, Inc., Menlo Park, CA, USA); initially sent out by BLISS then readvertised by interested parent support organisations such as NeoMates54] to submit an email to the chief investigator, outlining their suitability to represent parents on the OPTI-PREM parent panel. The chief investigator reviewed all applications and included those who met the inclusion criteria. These were parents who:
- had a very preterm baby
- replied to the request for interview
- were able to invest time reviewing the protocol and contributing either face to face or through virtual media.
We were keen to have a diverse as possible representation of parents in the panel. The panel was refreshed in 2020. This was because some parents were not either not contactable, returned to work, or their babies had grown into toddlers and other priorities took over.
Recruitment to Study Steering Committee
The chief investigator approached BLISS for representation on the panel. The research engagement officer accepted the offer of a place on the Study Steering Committee. BLISS also provided a letter of support, submitted as supporting evidence to the NIHR, through its chief executive.
Recruitment to the national stakeholder event
An advert using BLISS social media was sent out inviting parents to participate in the stakeholder event held in April 2022.
Involvement of parents in OPTI-PREM
Parents were included either as part of the full panel, or through the parent panel lead, at all stages of the project. This included:
- protocol review
- development of posters and parent information leaflets for the overall project
- detailed involvement in workstream 4
- representation at OPTI-PREM study steering committee and collaborator meetings
- review of results for face validity
- participation in stakeholder meetings
- contribution to implications for decision-makers
- contribution to scientific output on the project
- anticipated contribution to the public dissemination phase of the findings of OPTI-PREM.
Results
Preparatory work
In preparing for the NIHR funding application, we held a volunteer focus group discussion, co-ordinated with BLISS. This discussion was held with parents of very preterm infants born at 27–31 weeks gestation in England and cared for in the Black Country. This sought to explore parental perceptions on neonatal care and movement of their babies between types of neonatal units and to evaluate how best to engage parents in a project aiming to refine neonatal service delivery.
Parents reported that prior to having had a very preterm baby, they did not have any significant understanding of these types of neonatal units, or how and why this could have relevance to their babies’ outcomes: ‘I originally thought that all hospitals in the NHS were the same’; ‘I did not know that different hospitals had different abilities to care for babies’. They supported research into defining the best place for delivery and care of very preterm babies, and how best to support families whose very preterm babies were being cared for in hospital. Parents felt that research based on place of birth was valid with clinical outcome being their main concern. They noted the importance of considering parent perspectives in developing strategies on where babies should be cared for, and recommended broadening recruitment for parents nationally, with the help of BLISS.
Recruitment
As a result, we sent out a national advertisement through BLISS social media platform (Facebook). Forty-two parents responded to this from around the country, and 10 were selected to form a parent advisory panel. The panel comprised both mothers and fathers, including parents with twins and a neonatal death, all born very preterm, within the gestational age range of 27–31 weeks.
Training
The original panel received a day of training (face to face and virtual) in which the principles of public engagement in clinical research (INVOLVE)55 the project protocol, and guidance for preparing parent information leaflets were reviewed.
Participation in OPTI-PREM meetings
This was followed by further parent panel meetings (with face-to-face and virtual participants) in which the project protocol and plans for the study were reviewed. In total we had parent representation in 27 separate meetings: 6 parent group meetings, 11 Study Steering Committee meetings, and 10 OPTI-PREM collaborator meetings. It was not possible to have all parents present at all study steering committee and collaborator meetings. The parent panel chair and BLISS representative fulfilled these roles.
The panel contributed to development of parent information leaflets, unit information leaflets, posters, photographs of their baby (with consent) for the online website and posters. In workstream 4 (see Chapter 8) they participated in developing the ethnographic component of the study regarding the most appropriate aspects to study, and questions to ask in the qualitative workstream. The parent panel chair was part of the interview panel in the appointment of the senior qualitative researcher employed to undertake the qualitative work on the project.
The parent panel acted as study guardians and assessed face validity of the work as it was progressing. They contributed to working group and stakeholder discussions on the results, discussions to determine implications for practice at a national level with respect to place of birth for very preterm babies, and dissemination of information to parents.
The parent panel was separate to the parents interviewed for workstream 4, who formed part of the study population. These will be described later.
Discussion and conclusions
The inclusion of the parent panel to OPT-PREM study design added value and contributed to the integrity of the project’s intent. It offered the project team reassurance that the voice of parents, families and babies were considered at all stages. Throughout the project, the lived experience of parents brought a reminder to the team of the practical issues that parents and families faced, and why it was so important for the project to be completed to the best possible standard and make a difference to the lives of babies and their families. At the same time, through stakeholder discussions in which parents shared their lived experience not just with the study team, but with all stakeholders that attended (25 April 2022), parents were able to reach decision-makers, clinicians and managers across different geographic regions (see Chapter 9). This was a powerful contribution, for which parents were acknowledged, for sharing their practical issues. Similarly, including parents in the project and meetings, contributed to their increased awareness of the complexities of decision-making around capacity and resources in neonatal and maternity services around the country. Refreshing the panel in 2020 was an inadvertent bonus for the project, as the input remained more contemporaneous to the practices in neonatal units.
Reflection and critical perspective
Overall, the inclusion of PPI in the project was positive, and aligned well with the NIHR-INCLUDE strategy.56 The OPTI-PREM team are reassured that the voices of parents, families and babies have been represented. This representation, however, was biased, because we used one portal for recruitment of parents to the parent panel, that is BLISS. Parents who had not subscribed to the organisation, or were unaware of or unable to use social media for whatever reason, were not offered the opportunity to participate, by default.
As discussed in Chapter 12, there is more work to be done to ensure that the voices of minority groups, different socioeconomic groups and electronic/virtual media capabilities are incorporated. As we learn more about health inequity and inequality in perinatal services,57–60 we believe that a stronger, more inclusive foundation is required for all future perinatal projects. Efforts to improve PPI require sustained focus, funding and advocacy by NHS, professional and societal organisations.