Measuring medicine burden in people living with HIV in Kent - a student research case study

Last updated on 24 Mar 2021

One research project involving students at the University of Kent and Greenwich is a study looking at medicine burden for people living with HIV in Kent and Medway.

Dr Rebecca Cassidy, Centre for Health Services Studies (CHSS), University of Kent and Dr Barbra Katusiime, Medway School of Pharmacy, Universities of Kent and Greenwich, explain:

‘Students get to look at the medicine-related issues around people using antiretrovirals and also think through issues to do with illness-related stigma. So, for this we use the LMQ (which is a validated instrument, which has been validated across a broader spectrum, but never specifically with an HIV positive population) and also a stigma questionnaire which is for chronic illness looking at some of the issues around taking medicines. We also included some questions about people’s experiences of ‘disclosure’, so the students are collecting quite a lot of data. It's quite a big questionnaire and, with different aspects, they can do slightly different analysis towards the end.

‘This group project involved close working with the local Community Trust, who run the sexual health clinics where HIV treatment occurs and sees the students individually included into the research process. The training provided is an important part of this - specifically for research in an HIV clinic. Students cover issues like confidentiality, informed consent, the rights of research participants to refuse or withdraw, and having a non-judgmental attitude. The clinic staff, as well, were instrumental in that and, also talking to the students about what to expect. The things that you should or shouldn't say, specifically, to people who are HIV positive and working through with them how to come into the clinic and how to be comfortable in that environment.

‘Before COVID it was also possible for the students to have placements in the trust so potentially before they go in, they can also be there as part of their broader pharmacy training.

‘This project includes both a qualitative aspect, with self-completed questionnaires. It expanded in the second year with another six students with a second location, allowing recruitment through two clinics.

‘Students were in clinic, taking part in recruitment. They were part of the whole process which had been worked out through collaboration with the trust staff to make sure that it fitted together with existing clinic processes so, for example, the participants’ information sheet matched the ‘hello form’ that was already being given to people within the clinic. The students could take part, with clinic staff supporting them, in screening and identifying eligible participants. Then, the questionnaires were distributed after clinic appointments and people could either fill them in then and return them to the students or take them home and return to us with a prepaid envelope. In the second round of recruitment we also included QR codes so people could do the questionnaire on their phone, either immediately, while waiting for their appointment, or later.

‘We did recruitment which fitted in with clinic times. The students tended to go to the clinic in pairs for their own safety and comfort and sometimes clinics are in the evening. Sadly, with COVID, the interviews have not been able to happen this year.

‘For us, as a research team, the reason that we chose to go with this multi-year model, in the first place, was because of recruitment - trying to just get enough questionnaires, as one year of recruitment wasn't really going to do it.

‘The rolling ethical permission meant that, aside from changing student names and removing and adding the new cohorts, there's very little that needs to be done, so it's only minor amendments.

‘For the students, I think this has been a really successful project, and we've had some really great feedback from them. They've been able to do some research with a real research question. They’ve engaged in the recruitment and had interaction with research participants and experience of working as a team. Obviously, they have to do their individual analysis for their thesis, but they work with us as a research team and we support them to carry it out.

‘The training and the practical experience of issues, in terms of confidentiality and so on, has been invaluable, and I think it also links well with their practice and development as pharmacists.

‘All students present posters demonstrating their results from their individual piece of analysis coming from the data and the results have been really impressive. The students get a lot out of it but also our co-applicants from the trust have really been impressed by the level of engagement and the level of analysis.’

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