Researchers' experiences of patient & public involvement

Hayley

Female
Age at interview: 30

Brief outline: Hayley has been coordinating the involvement of young people in research approximately three years.

Background: Hayley works as an involving young people research officer. Ethnic background: White Welsh.

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Hayley is an involvement coordinator at a research centre in a university. She previously was a youth worker, but moved into involvement in research after completing her Master’s degree for which she had conducted some research on the impact children and young people have in forums set up to aid service development. She found that her participants didn’t report the impact the young people had on policy and local services. This got her thinking about the limitations imposed on involvement by the ways in which systems and structures are set up. 

In her current role, Hayley aims to facilitate the involvement of young people in research. She draws on her background in youth work to try and ensure it is an engaging experience for them and not ‘too boring or too schooly’. She also has to support researchers in involving the young people and evaluates the experience from the perspective of the researchers and the young people. An important part of her job is ensuring that all necessary policies and procedures are followed. These include complying with child protection and other university policies. 

The young people Hayley works with are aged between 14 and 21 years. Although they are mostly white and from South Wales, they believe themselves to be a diverse group. When Hayley discussed the issue of diversity with them, they responded by saying ‘We’re into different types of music. We’re into different types of fashion. We are representative because young people are different in these ways as well.’ 

They meet on Saturdays in the early afternoon to suit the young people’s schedules, and the meetings last for three hours including a lunch break. The young people are given vouchers to compensate for their time and some of them have shadowed researchers during data collection. They can put their involvement on their CV and Hayley has provided references for some of them. The group often gets invited to attend conferences, but that this often can’t happen because they take place during school hours. Instead, they decided to make a film to promote the group and tell researchers about their work without having to be there. 

Hayley said that involvement for her is a two-step process. It’s about giving young people the opportunity to voice their opinions and bring their experience and knowledge into the research arena. The second part is about how researchers then listen and make changes based on it. She said that good involvement involved keeping the young people in the loop, feeding back to them and not just taking information from them. Hayley would encourage researchers who are new to involvement to look seek advice from others who are already involving people.

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