Any thoughts or perspectives on thesis wording please

[March345]

Hi everyone,

Firstly, thanks so much for spending the time reading this and possibly offering your thoughts. I am a Trainee Clinical Psychologist, and currently my thesis is undergoing ethical review. The study is looking at service responses to repeated self-harm in adults. I've found quite a lot of the research is fragmented, and often focusses on just one perspective, often recruiting people who are actively engaged with services and missing out on key voices! Therefore, I plan to interview clinicians, people who may be currently using services, or may have used them in the past but do not currently for whatever reason that may be.

At this stage though, I would be really keen just to hear people's thoughts and perspectives on the wording I am planning to use (at this point) in the participant facing documents. For example, does it make sense? Does it feel inclusive, or possibly exclusive? Would you suggest changes? The main phrases I'm hoping to collect thoughts on are as follows:

Experts by Lived Experience - this is the term I'm thinking of using to refer to people who repeatedly self-harm, and either currently, or have in the past received support from services in relation to self-harm. I have made a deliberate move away from using the term 'patient', due to associations with the medical model, and the fact that some people may not be/identify as a 'patient'
Experts by Professional Experience - this is the term I'm thinking of using to refer to people who provide services in a professional capacity e.g. clinicians, care staff
Repeated self-harm - I'm using this term to refer to self-harm on more than one occasion, although prior to interviewing participants I will ask how they wish to refer to this b/h
Service Responses - I'm using this term to refer to any responses from services in relation to self-harm, this may be A&E, GP, during therapy, contact with third party organisations e.g. Samaritans

Any thoughts or views would be really valued and appreciated. Thanks again for your time, any questions etc. please just let me know

 

[March345]

I possibly should have added, if you do have any thoughts - then please just reply to this thread! Thank you 

[Vermilion]

Personally I would prefer the term service user rather than 'Experts by Lived Experience'. The word 'expert' implies a level of knowledge that is much higher than what I have and I imagine that the average person (i.e non professional) would interpret it this way.I also think that the term service user would be very apt if that's what you're specifically writing about.

[Lorien]

I'm doing a Social Work Degree and we have an experts by experience module each year. Throughout the first year one both the experts and students felt a bit weird about it. It does seem to be the new in phrase, but it is odd. We discussed that it might be because of the disparity in title to that lived experience. Often people are not treated as the experts in their own lives and are instead told by 'experts' what their experiences are. Many of the people we met felt that the discomfort around 'service user' and in some more cringey services 'customers' belonged to the professional not the individual.

Personally in a health setting I'd prefer patient because that is universal and holds little negative connotation. Re professionals I prefer that or practitioners depending on situation. To call them experts also has some questions. While many will have a high level of broad knowledge, very few are 'experts' it kind of waters down its meaning eg Simon Barron-Cohen is a recognised expert in Autism, but most Psychiatrists know very little about it and often misdiagnose as something else. If you consider power dynamics in this context, to label a person as an expert exaggerates the imbalance and potentially adds to difficulties in challenging opinions.

The other two seem fine although due to its use by services repeated self harm while accurate might feel a bit loaded. I couldn't think of a word that wouldn't be though, so maybe this is more related to poor service delivery than linguistics.

[March345]

Hi Lorien & Vermilion,

Thank you for your thoughtful responses, you both raised some really important points and helped me reflect on the implications of the terms. I appreciate the difficulties re. the term 'expert', and like you say Lorien it can at times exaggerate or maintain power imbalances. Due to the design of the project (and the inclusion of people who are not technically patients or service users) I have decided to opt for the term 'expert by experience' but will make sure to check with each participant how they choose to identify (e.g. patient. service users etc.).

Thanks again for your contributions.