Researchers' experiences of patient & public involvement

Sarah B

Age at interview: 51

Brief outline: 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.

Background: Sarah B is an Associate Professor in Children’s Nursing. She is married with an 11-year old son. Ethnic background: White British.

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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 crèche 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’.


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