Worrying about getting it right

In addition to having concerns about “those” representatives, professional identity and demands on their time, professionals were uncertain about different areas of the PPI process and their role within it. Many of the professionals admitted that this uncertainty made them worry and question their decisions and behaviours with regard to PPI, emphasising the potential for negative emotional effects of PPI on the researchers. Some of these worries were specific to the individual or context and only expressed by one or two of the professionals. For example, Rachel (RC), who was a researcher and also a clinician, spoke of worrying when one of her representatives did not know they were still having seizures and was unsure whether to broach the subject, as the representative was not interacting with her as a patient and it was not her role to advise them in this context. As discussed below other worries such as the ‘representativeness’ of the representatives and upsetting representatives were much more prevalent.

As evidenced in Chapter 3, some of the professionals had clear ideas about who should and should not be a representative, while others were less certain. The source of this anxiety seemed to be a concern about how representative a representative can be expected to be. Representativeness holds a specific meaning in the context of quantitative research, with studies being designed to obtain a sample that truly reflects the wider population. In the context of the epilepsy research community, people with epilepsy were seen by professionals as having extremely varied experiences and views based on age, gender, type of epilepsy, education, profession, treatment and social class. Professionals therefore worried that the people they were selecting to involve were not really representative of the epilepsy community as a whole:

“I think the epilepsy experience, is varied. We have got um carers of people with epilepsy there, erm both partners and people who work in the care system, um

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somebody who has lost a brother to an epilepsy death, parents who have lost their son to an epilepsy death, a person with mild learning difficulties and his mother, umm a chap who with learning difficulties who comes on his own, we have eerm, people with really mild epilepsy, a couple of seizures and nothing more. People who have had epilepsy improved with surgery and no more seizures, and people with really difficult epilepsy that keeps coming and coming. And I don’t think any one of them could give you the patient experience.” (Tom, CP)

This, in turn, led to professionals worrying that they were being tokenistic or not engaging in meaningful PPI. The way most of the professionals dealt with this worry was either to have as many representatives as possible (SS1 and CS117) or to accept that achieving ‘real’ representativeness was impossible and to select representatives that they felt could have the most effective input in a given situation (UKERN and CS2):

“PPI suffers from language being used in a very bad way. Like a user representative for example, no user can be a representative you know, erm… people who use services any service, are always diverse as anyone else. And no one is really a representative, they’re a patient.” (Charlie, NL)

“It is inevitable that there are going to be a range of views and a range of constituency across epilepsy, er, I think we have to, we have to accept that and we have to do the best that we can to ensure urm a wide selection of view are taken, but at the end of the day we can only accommodate a certain number of people in the study groups be that be patient public or clinicians and researchers, it means to take a similar view that you know there are a number of clinical domains er which aren’t necessarily represented in the network as it stands. So it is not really specific to PPI its er it is, it is a the brood scope and heterogeneity of epilepsy, within research and society.” (Alex ND & CP)

The professionals concerns about how ‘representative’ a representatives can and should be are reflected within the PPI literature (Entwistle, Sowden, & Watt, 1998; Entwistle et al., 1998; Rhodes et al., 2002).

In comparison to professionals’ worries about representativeness, their worry about not wanting to ‘upset’ the representatives is harder to describe. It was clear that professionals worried about their interactions with representatives far more than they did with their colleagues. In some cases this worry seemed to directly impact on the professionals’ behaviour and it seemed to be consistently present for some of the professionals, but it was not always clear why. Alex (ND & CP) suggested that it is because he felt a level of responsibility for the representatives, and in his clinical role as a neurologist he was used to taking care of patients:

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Alex “You do feel like you have got a strange responsibility actually.. erm... it's quite different erm..., erm... and I can't necessarily articulate why but it's quite different having a responsibility for one's fellow academics as opposed to erm... the patient and public representatives there is a kind of different feeling of responsibility I think.

Beth I know you just said it's hard to say why but...

Alex Don't know, don't know perhaps I want to, perhaps I am being too paternalistic. Erm... and I guess in part they are patients in a sense they might be, in my subconscious they might be half way between patient and professional colleague. That's probably my problem that I need to deal with ((laughs)) but erm... there you are I have articulated that.”

This responsibility Alex felt seemed to hold true across the different groups of professionals. It seems that the very act of choosing the representatives and bringing them into the project made the professionals feel responsible for their welfare in a way that did not hold true for fellow professionals. This may have been due to professionals’ awareness of the power discrepancies within the group; however I did not identify and address this during data collection.

Les (ND) suggested another reason for worrying about representatives was the acknowledgment that they might have a personal and emotional investment in the research that the professionals did not have. They were therefore seen as more vulnerable to being upset on a personal level, by the rejection of their ideas or by the language the professionals used:

“I think that their position is quite vulnerable, vulnerable because of that. Urm, and, because people are only there to represent themselves, they have got sometimes a personal reason to be there, so I have mentioned the mother and father who are there because their son died of an, of a epilepsy related death, a SUDEP18 death and they would be particularly vulnerable to any project involving SUDEP and then there is also somebody who has lost their brother there, and so you know if we put in money for one of those kind of projects, and it, it, was deemed to be not scientifically strong enough, or erm if they thought they were supporting something that was going to give a more positive answer or more definite answer and it never got there I think people can be quite vulnerable.” (Tom, CP)

“Sometimes they can get things wrong and go home insulted, or go home, er, just thinking they have, you know they feel as though you haven’t understood something and their backs go up and the barriers go up and so, there are..[..].. Well I think it just comes down to sometimes as professionals you use language which is scientific eeerm and so, for example if we say mutations in the gene, we know what that means but to the lay public that can mean several different things. Urrr and, um, and, I think you know sometimes patients can get it wrong from that perspective. Urm I think there has been one situation ahh, where you know Jess has rightly said to

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patients look we can’t form, buddy, buddy relationships here, we do have to make sure that we guide you rather than form you know, long life friendships and I think one or two got were insulted by that. So I think you know, so sometimes we get it wrong, in terms of language, urm in terms of over scientific presentation, misinterpretations.” (Les, ND)

As touched upon when discussing the professionals’ concerns about ‘those representatives’, professionals were aware that some of the representatives were ill, and as such they did not want to draw attention to or exacerbate the symptoms of their illness and in doing so risk causing offence or distress. Other ways in which the professionals worried that the process of PPI could cause distress to the representatives included having them involved in a bid that then did not get funding, not being able to act upon their suggestions, representatives becoming frustrated over the slow pace of the research (or network), being insulted, failing to communicate in a way they understand and introducing new information on their condition which could led to increased anxiety on the part of the representatives.