Research should be with rather than on service users
At some point near the end of many weight management programmes service-users are asked “Would you mind completing this short survey about the programme”? Questions usually focus on a range of issues such as the usefulness of the programme, staff support, facilities, communication, post-programme goals etc. A rating scale is often presented and instructions given to respond between 1 and 10, with 1 reflecting that you ‘strongly agree’ and 10 ‘strongly disagree’ with a particular statement. We believe it is important to gain the views and options of services-users about their programme experiences.
This outlook is reiterated by Sarah Le Brocq from HOOP UK who believes this “ensures programmes or interventions are fit for purpose and achieving the correct outcomes. It also makes people feel valued if they can see their feedback has been taken on board”. She is also clear that it can be a challenge to get responses from service-users and suggests: “The biggest challenge is getting people to engage in feedback and give their honest thoughts on their experiences. We get asked for feedback all the time for things these days and it can be tiresome, so encouraging people to engage is the hardest thing”.
How service providers and researchers elicit the views of weight management service-users requires further consideration. Whilst surveys and the rating scales found within them are a useful initial means for gathering information, two PhD students at Leeds Beckett University believe a person-centred approach is also needed that moves beyond an arbitrary number on a rating scale. This kind of approach enables the situated nature and complexity of service-users’ programme experiences to be captured.
These PhD students have worked in ways that seek to capture, from a person-centred approach, the experiences of individuals who have been eligible for a weight management intervention and those supporting them to do this. Both studies adopted a qualitative approach to data generation and were underpinned by a philosophy that sought to research with rather than on service users. Kevin’s research involved working with individuals who either completed an intervention, dropped out prematurely, or choose not to attend following an initial referral. This research utilized an interview approach and gathered detailed accounts of the research participants weight management intervention journey. Approaching the research in this way enabled a broader understanding of the environmental characteristics that afforded attrition to the weight management intervention, or indeed constrained it. In Rachel’s research, disabled young people, along with their families and key stakeholders, participated in a qualitative inquiry into their experiences of attending a special school weight management programme. An important dimension of this research was the careful consideration of data generation approaches to ensure these were accessible and inclusive for the disabled participants. This involved getting to know these young people, their preferred means of communication and developing data collection techniques based on these understandings, rather than using a strategy that may not be accessible for these young people. By including the viewpoints of young disabled people within weight management research, it is hoped other researchers will recognise that these young people have valuable insights that can inform practical actions and changes to weight management programmes.
By undertaking both research projects there are a number of questions that emerge when attempting to research with the service-users of weight management programmes:
- Who knows best?
Despite needing to understand service-users perspectives, it should be recognized that they might not necessary know why they do what they do. So, who does know best? And how should research projects reflect this in who is invited to participate in research?
- How should research be undertaken?
There are merits for adopting a person-centred approach when researching with service-users. In doing this researchers need to reconcile the time needed to conduct research in this way, have a flexible outlook and be willing to take risks.
- What about those who don’t become service-users?
Gaining the insights of those who become service-users gives a one sided story, what about those that don’t attend. Understanding why they don’t attend means programmes can be developed with these perspectives in mind. Of course, securing their participation in research is a more challenging endeavor.
Whilst this post has focused on the relationship between service-users and researchers we believe the points highlighted are also relevant to those stakeholders tasked with developing weight management programmes. That is, involving potential service-users in the development of programmes is essential if more meaningful service-user informed initiatives are to be developed.
Kevin has been with Leeds Beckett University since 2005. In 2020 he completed a fully funded PhD programme. His thesis explored the lived experiences of various stakeholders involved in an integrated healthy lifestyle programme.