Patient and public involvement (PPI) underpinned the KCS programme from its inception to its conclusion. The main contributor to PPI was an experienced lay researcher who had worked with members of the KCS programme team on previous child safety projects. In addition, other parents with young children advised the project on the design of some of our data collection tools. This chapter describes the extensive PPI involvement provided by the lay research adviser over the 7 years from when the project was designed to its completion.
Our lay research adviser attended multicentre 3-monthly project management group meetings and 6- to 8-weekly KCS programme meetings with the Nottingham team. Each of these meetings had a specific PPI agenda item to which the lay research adviser spoke. In addition, she contributed to all other discussions at these meetings and provided a lay perspective to the decision-making process. Over time, she contributed increasingly to the evolution of the KCS programme, finding her work enjoyable and a useful learning experience. She feels that she was able to add a personal perspective, looking at processes from a parent’s point of view. As one member of the research team commented:
She brought a much needed different perspective and voice to the team . . . she was very good at challenging and questioning – this brought greater understanding.
During the design of the project, the lay research adviser advised on study design, particularly in relation to strategies for participation recruitment and retention. She contributed to drafting the grant proposal, particularly to the sections on PPI involvement and dissemination, but also by commenting on other sections of the application. Early in the KCS programme the PPI input involved commenting on protocols, advising on detailed recruitment and retention strategies and working on invitation letters and information leaflets, questionnaires and a lay summary of the programme for the KCS programme website. She was able to assess the tone, readability, font and content of the documents, making sure that they were written in plain English. This was of great value to the team, as this quotation from one team member illustrates:
It was really helpful to have the involvement of someone who was able to translate our jargon into plain language.
The lay research adviser attended NIHR training on patient information for parents and children, in-house training on research methods and on undertaking home observations for study B and the training for children’s centres for using the IPB for the RCT in study M. She also drafted reports on PPI input for interim reports and drafted this section of the final report. She received payment for her time and involvement in the project in line with local and INVOLVE policies on consumer/lay involvement (www.invo.org.uk/posttypepublication/involve-policy-on-payments-and-expenses-for-members-of-the-public-including-involve-group-members-february-2016/).
The lay research adviser made substantial and important contributions to studies A, B, G and M in the KCS programme. She has described her input in the following sections.
Study A (piloting of case–control questionnaires)
I visited a local Nottingham children’s centre with a researcher for the purpose of piloting questionnaires with parents. I established a good bond with parents and when the questionnaires were returned, they were all from parents that I had spoken to. One of the parents was particularly interested in being involved further with the study. With my support, she went on to provide feedback on a follow-up questionnaire at a later stage in the study. She was able to represent the views of a significant ethnic minority in the area and also had two young children.
As the researcher who accompanied her on this occasion commented:
She was able to engage participants in the community to take part piloting study tools and had a better response than the researcher present at the same session.
Study B (validation of tools used to collect data)
After some initial study specific training, checking my ‘letter of access’ with the Human Resources department and of course contributing to and becoming familiar with the questionnaire, I embarked on a series of some 25 joint home visits with a researcher. The roles of leader and recorder were shared over the course of visiting. I was keen to make sure that we had a good sample of parents from ethnic minorities and kept this firmly on the agenda. I was able to share views about what it would be like to have a researcher coming into your home and what was required to help set up visits in a way that would encourage parents to engage openly with the research team.
The first contact was very important in order to gain a rapport with the parent – to have a friendly disposition and understand that the parent may be having a bad day. The parent may need to be reassured that it was fine if their child woke up and their attention was diverted. Sometimes participants were nervous about our visit, but I was able to reassure them. Joint visiting diffused the tension, avoiding the intensity of a one-to-one and, as a lay research advisor, I was able to put parents at their ease with friendly remarks and by taking an interest in them. I reassured them that they were not being ‘checked up on’. Some parents seemed embarrassed because the house was untidy and I empathised with them about this. If their child had previously had an accident, for example had fallen downstairs, they were understandably sensitive. I was able to empathise without giving direct advice.
The data sheet completed, we left the parent after giving them a safety leaflet. We parked some distance from the home and double checked the data (for example on the issue of storing things at adult eye level, which can be difficult with people of different heights, but deciding that the participant’s eye level was the correct marker). We documented any additional field material and I received positive feedback on the legibility of my writing!
The researcher who undertook these home observations with our lay research advisor commented that:
She was involved extensively in study B. Her attendance at the home visits was valuable not only for the process of data collection, but also in diffusing the tension around asking participants to show us, for example, where they stored medicines and other potentially harmful substances, and other aspects related to home safety about which they could feel uncomfortable. Having been initially daunted at the thought of conducting such visits I am impressed at how smoothly they went, and our lay research advisor’s sensitivity helped in their successful facilitation.
Study G (interview study of parents to identify barriers to, and facilitators of, injury prevention)
I contributed by reading and commenting on transcripts of interviews and themes using experience I had acquired being part of a previous qualitative study. I felt that I was able to add another dimension to the analysis.
This quotation from one of the research team indicates the lay research advisor’s contribution to the analytical process:
Her feedback helped to ensure an objective approach was taken to the data analysis.
Study M (interview study of parents in children’s centres about safety practices)
I interviewed parents at children’s centres in several areas of Nottingham, exploring fire safety practices of the parent/carer of 0–4 year olds. I felt that the parents responded well, and I allowed them time to explain fully about related issues that were on their mind (for example one parent had experience of a fire).
Her contribution is summarised by one researcher as follows:
She was able to make members of the public comfortable so that they felt at ease at asking questions about the study.
Study M (randomised controlled trial of the injury prevention briefing)
I was involved in the development of written material, information and consent forms, recruitment of parents for questionnaires at several children’s centres. Further on in the study I supported a parent from a different ethnic background to contribute to the development of a follow-up questionnaire. More recently I made many phone calls and sent extra follow-up questionnaires to parents, noting any changes of address. I felt that this encouraged the favourable response rate achieved.
Regarding involvement in study M one researcher commented:
Our lay research advisor was able to assist with recruitment to the study, making potential study participants feel comfortable by explaining the study in a straightforward and understandable way.
Our lay research advisor has also played a major role in the dissemination of study findings. She contributed to Child Safety Week activities at the local hospital to raise awareness of the KCS programme to potential participants. She had a poster presented at the 11th World Conference on Injury Prevention and Safety Promotion in October 2012 and at the Society for Academic Primary Care conference in July 2013. The highly visual poster, entitled ‘Improving injury prevention research through PPI – towards working in partnership’, highlighted the importance of PPI involvement in the KCS programme, with photographs showing her in different roles, for example visiting a children’s centre, looking at a medicine cupboard, reading a report and attending a team meeting ().
Improving injury prevention research through PPI poster.
In addition, she was a valued member of the Nottingham KCS programme team during Mayfest, an annual free open day for the community and alumni and friends of Nottingham University. She helped to staff the presentation stand, which involved parents and children in ‘hands-on’ activities promoting the home safety messages arising from the KCS programme. The lay research advisor was pivotal in producing a leaflet to provide participants with feedback on the findings from studies A and G (). This involved framing the messages that we wanted to put across in a parent-/carer-friendly way to help encourage participants to read and absorb the information. She was also active in producing a dedicated website providing fuller participant result information [available at www.nottingham.ac.uk/go/safe (accessed 2 November 2016)]. Feedback from the research team indicates that:
Her involvement is fundamental in disseminating research findings to the public, ensuring that whilst they should be communicated in an accessible way, we should be wary of dumbing down.
Leaflet containing findings from studies A and G.
To summarise, PPI has played a major role in the KCS programme and the impact of this can be seen in a number of areas including the recruitment of participants, the achievement of high follow-up rates, the formulation of parent-friendly study material and the dissemination process.
