Sarah B

Sarah B’s job involves conducting qualitative research and teaching. She began involving parents in her research on children’s health approximately four year ago.

Sarah B originally studied zoology, but decided to begin a career in nursing after spending a summer working as an auxiliary. After retraining, she became a children’s nurse and took up a community post, which she loved because it entailed working with the whole family in what she described as the real setting’. Later, she moved into academia and now conducts qualitative health research, focussing on sick children. The holistic view of patients that Sarah cultivated in her nursing practice is probably what sparked her interest in and commitment to patient and public involvement. She said she’s always been wedded to the idea that we’ll never get services right if we don’t involve them’.

Sarah and a colleague devised a project on children’s health in which they’ve involved parents. They aimed to form a group that would shape the project and help the research team to take the right approach every step along the way. They secured some money from the Research Design Service to fund some initial work and identified a local community organisation that supported parents. The organisation allowed her to hold the meetings in their building and provided cr‚Äö√†√∂¬¨√Üche facilities so their children could be looked after whilst the parents attended the meeting. The funding bought lunch and refreshments for the parents.

The parent panel is mostly made up of mothers and Sarah said it was difficult to recruit fathers. She’s tried getting them involved by attending events where they’re likely to be, but with little success. In general, it has also been difficult to keep the parents involved. Sarah explained that as research takes a long time, people drop out and may feel they’ve nothing further to offer. She said it’s important to have some practical tasks for the parents to do every time and not just to go in and ask them to come up with ideas.

In Sarah’s experience, involvement isn’t supported by adequate resources because it’s part of what she called the invisible work that you need to do to support a project’. She said funders don’t reduce the amount they’ll pay researchers (although they may reduce the time they’ve requested), so it’s unfair to reduce the amount of funding for involvement. She suggested this might reflect the current attitude to involvement because if everyone was really convinced by it then it would both be expected and funded.

Currently, Sarah involves parents because her work largely focuses on the health of young children. If she were doing research with older children, ideally she would involve them. She was concerned that there would be difficulty accessing children and that getting past their gatekeepers would be challenging. She said, children are only as incompetent as we make them… but if we give them that opportunity to learn about new things and to develop, they’re quite capable of telling us what they think’s right and what’s wrong for kids.

Sarah believes involvement benefits both parents and research. She’s found that the parents enjoy it. One told her, It felt like I was actually finally doing something for me as a person, not just me as a mum, that I was using my brain again’. She would encourage other researchers to involve people saying, it helps to ground [research] in the reality of the experience’.

There is an issue about whether parents or carers can give enough insight. Sarah B would like to see children involved more directly.

Age at interview 51

Gender Female

If I was doing research with the older age group, then I would want to ask children’s views on involving children, and I think that brings in a whole other area of difficulty, you know, predominantly being access to children and getting parental consent and all those. I think one of the biggest challenges for researching with children as partners is about the gate-keepers. It’s about the fact that you have to have approval at so many different layers before you can actually give the child the offer of participating. It can be done, however – I mean I went to the research in child health network local meeting down in [place name] and they had a presenter who was talking about children’s participation in interviewing candidates for children’s nursing – so it’s not for research. But it was still really interesting because of the way in which they’d gone about it. Well, some people have used, you know, they’ve captured a video of children talking about their experiences of what they might want from a children’s nurse, or children in a video asking questions that they’d like to ask the candidate and then showing that to candidates on an iPad that type of thing. But in this instance they have actually chosen to involve the children face to face with the candidates. So they had recruited small panels of children who would come in and sit as a panel of three or four kids asking questions of each candidate, and I thought that was fabulous, because it gave those kids a real opportunity to influence, you know, to have a say on the qualities of the people they wanted. And I’d like to see the same kind of thing in a research perspective. I mean within the university here we have a centre for childhood and youth and they have used some young researchers I haven’t been involved unfortunately but it’s something I would be interested to get more involved in.

I think it gets easier when you get into the teenage years. I think it’s that bit between five and eleven the primary school years where the challenge is greatest because it’s also where people are most protective, and it’s hard to get through the gate-keepers.

I think our local health services, the hospital Trusts, don’t seem to have any particular system for enabling children who use their services to apart from filling in a piece of paper and putting it in a slot or, you know, tapping a screen to express their views they don’t have a group of children who they could go to, to discuss ideas. Because actually getting people to do a passive response is not the same thing, you know, it really isn’t the same thing. Whereas at the county council level they’ve got something called the children and young people’s partnership shadow board which is constructed of young people, but they are young people, they’re not kids. So again I think you have the same sort of issues around how do you engage younger children in a way that’s meaningful for them, and useful, to services or to research? But I think it’s quite a challenge.

Embed Print Transcript

NIHR’s insistence on PPI is great, but some funders still try to trim PPI costs. Short-term grant-related funding is not ideal; universities should invest in the infrastructure.

Age at interview 51

Gender Female

Inevitably we never have enough resources to do what we want and I think it’s particularly true for PPI because it is part of that kind of invisible work that you need to do to support a project. And it’s only really beginning to be recognised how much that needs to be part of the bid. So when you put in for funding, getting that, you know, embedded in there at the right levels I think is still quite difficult and I think it’s the thing that, you know, people don’t trim down how much you pay an academic, to fit a bid. They might trim down how much time you can give to it, but they will trim down how much you pay a parent or a patient to participate and that doesn’t seem quite fair to me.

If you’ve got a research assistant who is employed for a project who can do that for you, that’s great, but the project ends I’m still running the parent panel and my research assistant’s gone because, you know, the way in which research assistants are paid from projects rather than employed on a long term contract. So then you’re left doing it yourself and it is really hard to keep it going then because it’s on top of whatever else you’re doing. And it’s not funded. So you do end up trying to hold onto contacts and make sure they’re up to date, and I have to be quite honest and say that, you know, it doesn’t happen as often as it should do when I haven’t got a research assistant to help. But again it’s about funding, really, because if you’ve got the funding for someone to do that – I mean, wouldn’t it be lovely if you could say every university must fund someone to manage parent and patient involvement in research? That would be fab. I don’t think it’s going to happen in the short term at least, but it would be really nice if you could. I mean, it’s great now that the NIHR are saying that you must state exactly what the level of PPI is for each project in terms of exactly how people have been involved and how you anticipate they’ll be involved moving forward with the project I think that’s really positive. I don’t know – how much that’s actually happening in terms of the reality of people’s involvement. It’s not reflected yet to any large degree in the research reports. There are some that talk a lot about PPI but you don’t see it as a key part of every research report.

But I suppose we’re still in the game of convincing people, you know, I think we are convincing people but I don’t think we’ve really got it embedded yet in the culture. I think it is about making it mandatory in research, reporting in research, bidding, you know. But I think we ought to have really quite clear recommendations that every project must have funding in it to support PPI, and I don’t think that’s clear enough yet.

Embed Print Transcript

People from a lecturing background who are new to research would benefit from involvement training.

Age at interview 51

Gender Female

What about training for researchers do you think that academic researchers need training in order to be able to involve people?

Do you know what? You would hope they wouldn’t need it, but the reality I think is that they do. Because I think you get so used to operating within your own particular silos and you get so used to operating as a lecturer, certainly in a post 92 university like this one, you know, which is predominantly focused on teaching; it is changing slowly, research is becoming a higher priority but, you know, the majority of lecturers here are involved in teaching. They’re used to going into class and being the one who’s in control, you know. And I think its offering training in engaging with the public is a good idea because it grounds them in, you know, reminding them what it’s like, you know, and listening to other people’s stories and perhaps taking a slightly softer approach that is less paternalistic perhaps.

Embed Print Transcript

Sarah B explains the importance of direct experience; as a researcher or professional you may try to imagine what something feels like, but until it happens to you, you have no idea.

Age at interview 51

Gender Female

I rather think it depends on what you’re looking at. Because I suspect that if you’re looking other areas of health that there may well be people who have allied experiences or expectations of services that they would like to share and that might be quite valuable, even if they haven’t actually used the service themselves. My experience of personal experience of parenthood tells me that if I was to try and do the same research with people who are not yet parents, they wouldn’t be able to give me the same level of detailed support because they’ve not yet lived as a parent, they don’t know what life is like as a parent. And so I would say, in my circumstances, no, I wouldn’t go there because I think you imagine, as a non-parent, you imagine what it would be like to be a parent. I tried really hard, as a children’s nurse, before I had my son, to imagine what it would be like to be a parent of a sick child. I tried really hard to imagine it. Within, you know, within a day, within less than that, within a few hours of having my son, I realised how far away I was in my imagination from the emotional bond I felt with my son.

I was lucky I felt that emotional bond with my son very, very, early; very quickly within the first few hours, and it doesn’t happen for everyone, but for me it did and I could see straight away just how far away my imagination had been from the reality of being a parent and that emotional bond you feel to your child. And as a consequence I don’t think you can ask people to hypothesise about a situation they’ve never been in because the reality is when you’re actually in it, you may respond completely differently.

Embed Print Transcript