Blog – How Patient and Public Involvement (PPI) has shaped my PhD research about people’s views of frailty.
PhD Student with the ACRC Academy, Victoria Barber Fleming describes the use of PPI within her research.
What? “Frailty is when a person has less resilience to becoming unwell and is more vulnerable to medical illness. Although more common as we get older, frailty is not inevitably part of ageing and some older adults are fit while others live with frailty”. This wording which reflects the health care professional definition of ‘frailty’, was carefully chosen with a group of PPI members who have been helping with my PhD research. The research aims to understand if older people can recognise (or perceive) their own frailty. Further, we want to understand how perceptions of frailty impact future health care planning.
Why? The definition of frailty used by health care professionals clashes with the public perception of what frailty means (Britain Thinks, 2015). Older people do not like the term ‘frail’ and do not associate with it. However, health care professionals sometimes make decisions about a patient’s future care based on their frailty status (Rockwood & Theou, 2020). Older people want to be involved in discussions about their future health (Sharp et al., 2013). If older people view frailty differently to their health care professionals, there is the potential that the two groups are not understanding each other properly in relation to a concept that is very important for future health care planning. This presents a risk that older people may not be making informed decisions in relation to their future health and threatens their autonomy.
How? We will ask older people (1000 patients, aged 70 years and over) to complete a survey asking about their views of their own frailty and general health. We will compare participants views to a frailty screening tool measure of their frailty available in their GP records. This will help us understand how people perceive their frailty compared to the frailty screening tool used by healthcare professionals. We will then interview a small number (around 10) of the survey participants with or without a person close to them. We aim to understand the older person's and close person's perceptions of frailty and how these perceptions affect future health care planning.
PPI input. As many people dislike the term ‘frailty’, we need to be sensitive in how we approach this research. I am therefore involving members of the public, with experience of frailty, at each stage of the project to ensure the research is acceptable and accessible to people.
The first step (January 2023) involved an online Teams call with four PPI members. They kindly reviewed the documentation relating to the surveys ahead of our meeting (including GP invite letter, Participant Information Sheet, Consent Form and the Survey itself). During the meeting, we discussed how to sensitively word the language around frailty, which they all recognised was a term that older people may associate with loss of independence. The PPI members raised several key points that I had not previously considered, including that it is important to highlight on the GP invite letter that participants are not being invited to take part in the study because they are frail. Further, I had planned to invite ‘significant others’ to the interview stage of the research but again the wording here was challenged and we agreed on the term ‘close person e.g. relative/friend/neighbour’ which felt more inclusive and acceptable. We struggled to come up with a perfectly acceptable definition of frailty but the above wording reflects the consensus opinion. All of these suggestions were utilised to improve the study documentation. Further, I was struggling with the ethical decision as to whether to inform the participants GP if they perceived themselves to be very frail but this was out of sync with what the practice had on record for them. The PPI members came up with a pragmatic solution for this, which was to ask the participants specifically if they would want their GP to be informed of this mismatch. This approach was later accepted by the Research Ethics Committee and reflects how we will handle this scenario.
The next steps (March/April 2023) involved a further Teams call with two of the PPI members, where we considered how best to structure the interview. They advised me that people want to be seen on a ‘human level’ and that understanding what is important to the person is key as a starting point. With this in mind, we will begin the interviews by asking open questions about the person themselves. We reviewed vignettes that I had prepared for participants to understand how they viewed the frailty level of the people in the vignette. They suggested the term ‘story’ was less jargon than vignette. They also highlighted the importance of explaining to participants that there is not a right or wrong answer when they are shown the ‘stories’, rather we want to get at their own understanding of views of frailty. This has been adopted as a standard approach for the interviews.
Building on this session, I met with a PPI member and his wife, who kindly agreed to take part in a practise, ‘deconstructed’ interview with me. This allowed me to try out asking the interview questions and discussing topics in real time and with real people. It allowed me to consider practical aspects of the interviews (how to discuss the Participant Information Sheet and Consent Form, how to involve two participants in the interview, how to present the ‘stories’ e.g. ask if people want to read the ‘story’ themselves or for me to read it aloud). The stories felt comfortable for the PPI members and they fed back that they were fun and less intense than asking participants to discuss their personal situation. The PPI members confirmed that it was helpful to state that the ‘stories’ were ‘not a test’ and reiterate that there was no right or wrong answers. This session gave me confidence in the structure and approach but it reminded me to be clear about what question is being asked rather than talking more broadly about concepts.
I have thoroughly enjoyed working alongside PPI members to create the documentation and structure of the research. I feel more confident in the approach the research is taking as I know that it has been considered by others who have different life experiences. Particularly, I felt more confident when discussing the research plan with the Research Ethics Committee as I was reassured that the approach was thought through and acceptable to people with personal experience of frailty.
Britain Thinks. 2015. Frailty: language and perceptions. A report prepared by Britain Thinks on behalf of Age UK and the British Geriatric Society. https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/health--wellbeing/rb_june15_frailty_language_and_perceptions.pdf
Rockwood, K., & Theou, O. 2020. Using the Clinical Frailty Scale in Allocating Scarce Health Care Resources. Can Geriatr J, 23(3), 210-215. https://doi.org/10.5770/cgj.23.463
Sharp, T., Moran, E., Kuhn, I., & Barclay, S. 2013. Do the elderly have a voice? Advance care planning discussions with frail and older individuals: a systematic literature review and narrative synthesis. Br J Gen Pract, 63(615), e657-668. https://doi.org/10.3399/bjgp13X673667