Written by
Matthew Dobson, Research Associate, Teesside University, Centre for Applied Psychological Science; Email: m.dobson@tees.ac.uk
Dr Stephanie Kılınç, Senior Lecturer in Psychology, Centre for Applied Psychological Science, Pain and Long-Term Conditions theme; Email: s.kilinc@tees.ac.uk
This project is funded by the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NIHR200173). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
MyLifeTool (www.mylifetool.co.uk) was developed as a self-management intervention for a range of long-term conditions (LTCs), including neurological conditions, chronic pain, diabetes and asthma. Taking a positive psychology approach, MyLifeTool encourages users to reflect upon their experience of living with a long-term condition. This leads to a self-realisation and evaluation of an individual’s strengths and self-management strategies. The tool itself is solely user-led and is self-tailored to the person’s individual self-management needs. MyLifeTool was co-produced with individuals who have been diagnosed with an LTC and maintained participatory approaches throughout its development. This blog will discuss the importance of participatory principles by reflecting on the approaches taken during a co-produced evaluation of MyLifeTool.
Having been co-developed by individuals living with LTCs, patient and public involvement remains a core value for the evaluation and continued development of MyLifeTool. Currently MyLifeTool is undergoing a large regional evaluation in the North East of England and North Cumbria using a participatory approach with individuals with LTCs working as peer-research associates (PRAs). PRAs are considered an essential part of the research team and are involved in many aspects of the research process, including study development, participant training, quantitative and qualitative analysis, exploration of data and dissemination of findings. Through reflection upon the collaborative approach used within this project, we were able to make observations on how PRAs and participants reacted to the implementation of participatory approaches in our research.
In initial training sessions, PRAs were asked to use MyLifeTool over a month to solidify their knowledge. During a collaborative workshop, PRAs expressed their thoughts on the tool and its applications to the experience of living with an LTC. These experiences and discussions were then later used by PRAs to introduce participants into the study. PRAs particularly discussed the benefits of the reflective nature and individual focus of MyLifeTool. In a particular instance MyLifeTool was described as a toolbox for individuals with LTCs. The five separate elements of MyLifeTool were discussed as separate tools for separate situations in an individual’s life. It was expressed metaphorically that “you would not pick a screwdriver to do a hammer’s job”. The PRAs evaluated the tool as a pick ’n’ mix of activities which can be attested to the tool’s ability to tailor to the individual.
During recruitment stages, PRAs were asked to co-host introductory training sessions for study participants. It was observed that having the opportunity to discuss MyLifeTool with individuals who are also diagnosed with a LTC, gave participants a positive outlook on the nature of the study. This essentially meant that participants felt that they were working with the research team, in the pursuit of developing and evaluating a self-management tool for individuals like themselves, rather than solely participating in a study or providing data for analysis. This aligns with the aims of participatory approaches to raise participants to roles where their potential and self-determination is nurtured (Cargo & Mercer, 2008). Despite variation in LTCs, similarities in experiences between PRAs and participants led to increased rapport and understanding, which further promoted continued conversations where coping techniques and solutions could be discussed. To that extent, participants appreciated the qualitative element of this study, sharing that they wanted a further opportunity to discuss the experience of living with a LTC and to discuss the applicability and effectiveness of the MyLifeTool to their own situation.
Despite a lack of prolonged conversations, a good sense of meaningful and constructive collaboration has formed between the lead researchers, PRAs, and participants. In some cases, participants expressed their excitement in working together to aid the community of individuals with LTCs. It was clear to see that PRAs became the facilitators for the relationship between the lead researchers and participants. Essentially, PRAs became the ‘glue’ between the research process and participants’ subjective experiences of living with an LTC.
The importance of patient and public involvement, as well as participatory approaches, are of increasing import in policy and literature. However, successful and meaningful examples of these approaches can be underutilised or unfaithful to the doctrines of the approach (Espinosa & Verney, 2020). As previously attested, the implementation of a participatory approach in this study led to participants expressing increased faith in the project and the tool itself. In the discipline of Health Psychology, the essence in which we continue to promote and understand wellbeing, can only be facilitated by considering individuals as experts of their own health experience (Snow et al., 2016). In achieving this we stand to develop more rigorous and meaningful findings from our research.
References
Cargo, M., & Mercer, S. L. (2008). The value and challenges of participatory research: strengthening its practice. Annual Review of Public Health, 29, 325-350.
Espinosa, P. R., & Verney, S. P. (2021). The underutilization of community‐based participatory research in psychology: A systematic review. American Journal of Community Psychology, 67(3-4), 312-326.
Snow, R., Humphrey, C., & Sandall, J. (2013). What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study. BMJ open, 3(11), e003583.