The transplant sport athlete: an unexplored sporting culture

Louise Anderson, Sheila Leddington Wright, Annette Roebuck, Mike Price

My involvement

• 2015 – World Transplant Games as 2nd year undergraduate

• 2016 - Undergraduate dissertation: Athletic perceptions on the impact of student Sport Therapists at the World Transplant Games.

• 2016/17/18/19 – Medical team member British Transplant Games & satellite events

• 2017/19 – World Transplant Games: Sport Therapist & researcher

• 2018 – European transplant and dialysis games: Sports therapist

Transplant Games

• 1st World Transplant Games, Portsmouth in 1978

99 competitors from the UK, France, Germany, Greece and the USA

• 22nd World Transplant Games, Newcastle 2019

2,237 athletes from 60 countries took part in 15 sports

• Transplant Games promote active recovery for transplant recipients and increases the awareness of the benefits of organ donation

• The coming together of transplantees forms a culture to which they belong

Culture

• Culture is something people think, a set of beliefs or values that people in a particular group share.

• Culture is a way of dividing people up into groups according to a particular feature which helps us to understand something about them and how they are different or similar to other people (Scollon, Scollon and Jones 2011).

• What is the culture of this group of people?

Methodology

• Ethnographic approach

• 3 stage approach

• (1) Publicly available documents analysed. Documents from British Transplant Games website(n=10), newspapers (n=7), magazines (n=1), books (n=1) & media (n=1)

• (2) Semi-structured interviews with volleyball players (n=9)

• (3) Semi-structured interviews with cyclists (n=4), swimmers (n=3) and members of the management team (n=3)

• Team sports and individual sports make up the transplant games family culture

• Management take up the head of the family overlooking the individual family units

Insider or outsider: the family structure of the transplant games culture

- You can have a transplant but not be part of the culture

- Sometimes there is a feeling of being alienated

- Unpredictability of the family

- Power relationships within the family

You can have a transplant but not be part of the culture

I’m very excited to see my sister as well, I was trying to persuade my dad to come… because he’s also a tennis player and transplantee, he could have played for Country R (Participant 8)

I talk about it with my brother sometimes who's had a transplant and my sister who's also had a transplant… my brother is actually a better cyclist than I am but he can’t focus on anything long term… he would probably win gold at all the games (Participant 20)

Sometimes there is a feeling of being alienated

I've always gone to the swimming or to the

athletics to support other people and you find

that they'll come and support you, but if you

don't do that you are alienating yourself

(Participant 19)

You can't really share that [feelings]

anywhere else because no one else really

understands it, my wife doesn't understand it

and she was at an advantage (Participant 14)

Unpredictability of the family

I missed out on a couple because I stopped going from when I turned 18 I think 2 years to the British games and then sort of found my love in sport again and started it up (Participant 5)

The team manager can't come anymore because he's liver disease has Returned and is just waiting for that too be bad enough to put him back on the list and hoping he'll get a liver transplant (Participant 14)

Power relationships within the family

World

Transplant

Games

Federation

Local

Organising

Committee Management

Doctors /

Physiotherapy

Coaches Captains

Athletes

Experienced

In-

experienced

Spectators

Public

Hospitals

We’re one big family: the family values of transplant sport culture

- Sense of belonging

- Generational role models

- Unspeakable factors

- Pressure to perform

Sense of belonging

Time stands still since you last met which is great (Participant 6)

The amazing GB transplant cyclist, has offered to lend me a bike, so I will be cycling and running. That is what is so wonderful about the transplant community, we al look out for each other. (Document 4)

Generational role models

I want to be one of the old guys that’s 70

turning up and racing and everyone saying

‘look at them go’, yea its an ambition

(Participant 12)

If you are 70 years old and you still put it out

there on the track, have a medal with

my absolute blessing. I think that there are

those sorts of people are in inspiration to

everyone else because he is still going out

there and putting it in (Participant 9)

Unspeakable factors

I was very conscientious about, not my body, but about the scars on my body I suppose post-transplant, and these young lads were competing to see who had the best scars. (Participant 9)

To be amongst people who, where that is normal and where taking drugs is normal in someone, that's actually quite a nice place to be. (Participant 9)

Pressure to perform

I would say medal this year and win in 2 years

time when it's when it's at home (Participant

3)

I've got a good chance of a medal… it's a lot more competitive I'd say and coming in now although I have come in and won some medals I know I need to work a lot harder if I want to keep that up definitely (Participant 17)

How the family message is communicated

- Private vs public face, we are ‘normal’

- Culture shift

- Preaching to the converted

Private vs public face, we are ‘normal’

I was reassessed and given 10 to 14 days to live! By this time I was in a wheelchair on permanent oxygen! … my wife got a phone call [5 days later] to say a suitable heart had become available (Document 19)

The British cycling team transplant, it’s the best team in the world that nobody wants to be in, in that you don’t really want to be ill you don’t want to go through transplant but actually it’s such a brilliant team to be in once your there (Participant 12)

I think the British transplant games makes the NHS organ donation purpose of the transplant games ticked so I feel a responsibility to that (Participant 6)

I would like to see more recognition of donors and their contribution (Participant 13)

Culture shift

Preaching to the converted

I think more work needs to be done by

transplant sport to try and get the word out

more and engaging with health professionals

to help with that (Participant 16)

It's just like your preaching to the converted,

I've had my transplant and I'm quite happy to

promote transplant as a good thing but I'm

not sure how many people we’re actually

trying to persuade here most people have

either had it or been involved in it or would

like to get involved in some way so I'm what

should I say preaching to the converted

(Participant 20)

What questions do you have?

Photos with thanks to Phil Horan