Using participatory research to describe young people’s experience of cancer careTom GrewNCRI CSG TYA CCGOn behalf of the ‘Essence of Care’ research team

Introduction

Teenagers and young adults (TYA) are caught between two worlds: childhood & adulthoodCancer services are traditionally organised around the needs of children and older adults Health policy in England advocates the need for age-appropriate care & TYA professional expertise (NICE , 2005)

Increasing recognition of the value of patient experience and voice

‘No decision about me, without me‘

Aims

Work with TYA as co-researchersExplore the experiences of cancer care for TYA to inform a larger studyFind out the importance of quality of life in relation to survival for young people Find out the importance of research on family and friends for young people

Remit of the Core Consumer Group

To engage & deliver the research streams of the TYA CSG to a wider audienceTo participate in he development of research with the TYA CSGTo provide feedback on the research of the TYA CSG

5

Thinking back to the ‘place of care project’. How important do you think ‘quality of life’ is? (n=149)

73.4%

11.9%

10.5%

4.2%

0 5 10 15 20 25 30 35 40 45 50 55 60 65 70 75 80

Survival and quality of life and

survival are equally important

Quality of life is more is more

important than survival

Survival is the only

important thing

Quality of life is less

important

Proportion of answers (%)

6

Do you think research on the effect of cancer on your friends and family is important? (n=141)

No, research should just be about patients

Yes, research should be about

both

7.4

10.1

82.6

0.0 10.0 20.0 30.0 40.0 50.0 60.0 70.0 80.0 90.0

I'm not sure

Proportion of answers

Methods The CCG conducted peer-to-peer interviews, which were digitally recordedYoung people chose a ‘headline’ to reflect their storyHeadlines were expanded in group discussion using spider diagramsGroup analysis with the CCG using thematic analysis of headlines & transcripts

8

Carrying out young person interviews…

IF I’D HAD KNOWN… I WOULD HAVE TRAVELLED THERE

Choices: young people need the opportunity to chose where they receive their treatmentToby aged 20 when he was diagnosed didn’t have the choice. He told us “Being stuck in a ward full of old people is one of the worst things; watching them die, it wasn’t very pleasant.”

Jade aged 16 agreed, being with young children was equally as isolating: “little kids, you can’t really relate to them”.

For some though, the place of care was not important. “The only thing that mattered was getting better and that was the only thing. I didn’t care for anything else, like what ward I was on, I didn’t care, I just wanted to get better”

Where ever young people receive their care, all agreed; they wanted facilities to distract them and relieve the boredom. “I did paint, just to pass the time, but I felt such a baby doing it” said Trixxy who was 17 when she was diagnosed. “It would have been helpful if I could have filled my CV when I was there.”

THE ESSENCE ECHOTHERE’S NO CARE IN CANCER WITHOUT THE ECHO - Since 1802

IF I’D HAD KNOWN… I WOULD HAVE TRAVELLED THERE

Choices: young people need the opportunity to chose where they receive their treatmentToby aged 20 when he was diagnosed didn’t have the choice. He told us “Being stuck in a ward full of old people is one of the worst things; watching them die, it wasn’t very pleasant.”

Jade aged 16 agreed, being with young children was equally as isolating: “little kids, you can’t really relate to them”.

For some though, the place of care was not important. “The only thing that mattered was getting better and that was the only thing. I didn’t care for anything else, like what ward I was on, I didn’t care, I just wanted to get better”

Where ever young people receive their care, all agreed; they wanted facilities to distract them and relieve the boredom. “I did paint, just to pass the time, but I felt such a baby doing it” said Trixxy who was 17 when she was diagnosed. “It would have been helpful if I could have filled my CV when I was there.”

THE ESSENCE ECHOTHERE’S NO CARE IN CANCER WITHOUT THE ECHO - Since 1802

IT’LL FINISH ONE DAY, TREATMENT’S NOT FOREVER

knowledge sometimes of knowing that someone else has been through it and they’re fine now.” (Shirley)

Young people recognised their lives were put on hold but were safe in the knowledge that it was not forever. However, as described in a future edition of the ECHO, the life young people return

to, was often far from what they expected.

“...just reasoned with myself in the fact that this wasn’t going to be my life forever, that it would, I would one day get better and I would one day move on and forget about this” Trixxyaged 17 at diagnosis

CELEBRITY NEWS AND GOSSIP WORLD EXCLUSIVES

THE

ESSENCE ECHO

Focusing on getting though treatment, lives put on hold, and the knowledge that others had gone through treatment and survived: these were all mechanisms young people adopted to cope.

“You just have to cope, because no one is going to pick you up. You have to do it... I think possibly because it’s just the

Young people accept cancer treatment as ‘normal’: it’s the way to cope

IT’LL FINISH ONE DAY, TREATMENT’S NOT FOREVER

knowledge sometimes of knowing that someone else has been through it and they’re fine now.” (Shirley)

Young people recognised their lives were put on hold but were safe in the knowledge that it was not forever. However, as described in a future edition of the ECHO, the life young people return

to, was often far from what they expected.

“...just reasoned with myself in the fact that this wasn’t going to be my life forever, that it would, I would one day get better and I would one day move on and forget about this” Trixxyaged 17 at diagnosis

CELEBRITY NEWS AND GOSSIP WORLD EXCLUSIVES

THE

ESSENCE ECHO

Focusing on getting though treatment, lives put on hold, and the knowledge that others had gone through treatment and survived: these were all mechanisms young people adopted to cope.

“You just have to cope, because no one is going to pick you up. You have to do it... I think possibly because it’s just the

Young people accept cancer treatment as ‘normal’: it’s the way to cope

Findings- eight key themes emerged11 young people aged 14 – 25 years at diagnosis11 young people aged 14 – 25 years at diagnosis

Life changing impact of a cancer diagnosis

Provision of information

The role of health professionals

Choice about place of care

Coping

Peer support

Psychological support

Life after cancer

“Cancer diagnosis made me grow up”

“I’m more than my cancer”

“If I’d had known… I would have travelled there”“Cancer nurse tells mum to get out!!!”

“It’ll finish one day, treatment’s not forever”“Rehab[ilitation] buddies for cancer

survivors”“Counselling for patients to

cope”“The tumours out but what now?”

10

Is it useful to have us working as co-researchers?

‘…Yes because you could relate to them [CCG] on a personal level and it did create a comfort zone which enabled you to talk

easily about all aspects of you treatment and also the emotional side to it because you are safe in the knowledge that

they [CCG] have experienced the same...’Workshop participant

 

11

Is it useful to us to be working as co-researchers?

… I really enjoy working as a co-researcher; I think it was good for the workshop participants to see that young people were taking an active role alongside the professionals. It was also good on a personal level as it gives young people like me who had experience of cancer, the opportunity to be included in conducting research…’ Katie Brooman

What sort of information do young people share between themselves?

‘...and like I got diagnosed with an STD whilst on treatment, …the doctor came in and discussed the treatment for genital herpes with my dad. Not good’

Trixxy diagnosed 18

‘They don’t understand, do they?’

Shirley, diagnosed 14

ConclusionsQuality of life is as equally important as survival for TYA Young people think research should also be about the effect of cancer on family and friends Having young people work as co researchers is valuable and results in more honest disclosureThe experience of TYA cancer care was varied & complexThe eight themes which emerged were similar to research priorities identified by older adults- practical, social and emotional issues (Corner et al 2007). These results have informed the proposal for a five year longitudinal study to assess the value of teenage and young adult specialist cancer care.

Essence of Care research team: Phase 1Dr Lorna FernProfessor Faith GibsonDr Catherine O’HaraSusie PearceDr Rachel TaylorDr Jeremy WhelanNCRI CSG TYA CCG

James AshtonKatie BroomanTom GrewHannah MillingtonCarol Starkey

Thank you to Teenage Cancer Trust for supporting Essence

Thank you to Teenage Cancer Trust for supporting Essence

Acknowledgements

The Find Your Sense of Tumour participants 2010The Find Your Sense of Tumour Steering CommitteeThe participants of the one day workshopCarol Irving and David Wright for their role in supporting the CCG Teenage Cancer Trust for funding the Essence of Care project