Transcript Teenage and young adult (TYA) services: who, where and what?

Teenage and young adult (TYA)
cancer services: who, where and
what?
Dr Rachel Taylor PhD
Senior Research Associate, University College London and South Bank University
Dr Lorna Fern PhD
Research & Development Co-ordinator, National Cancer Research Institute’s Teenage &
Young Adult Clinical Studies Group
Who
What
Where
WHO cares for young people?
Aim
• A scoping exercise to define the skills of health
professional involved in TYA cancer care
Study design
• Multi-method:
 Prospective data generated inductively in a
workshop
 Secondary analysis of data generated at the
2006 TYA Winter Education meeting
Methods
• Content analysis of literature to identify key
competencies
• Ranked on a diamond through group consensus
with the most important at the top and least at
the bottom (Fallon et al. 2008)
• Analysis: Comparative narrative analysis of the
workshop data combined with the thematic
analysis of the TYAC data using mind mapping
Health
professional
Paediatric
health care
Child
Adult
health care
Parent
Health
professional
Patient
Family
Teenage & young adult health care
Health
professional
Family
Young
person
Peers/others
WHERE are young people cared for?
Aims:
• To identify the perceptions of young people
with cancer and of professionals of the key
components of a specialist TYA cancer unit
Study design:
• Mixed method with data generated during
workshops with health professionals and young
people & a survey with young people
Methods
• 15 core characteristics of specialist TYA cancer
care from the literature
• Ranked cards in the order of importance on a
pyramid
 Through group consensus in the workshop
 Individual opinion in the survey
• Analysis through calculating a rank score
Results
Top priorities
Young people
• Dedicated unit
• Contact with peers
• Provision for
partners/parents to be
resident
• Somewhere to go other
than bed
• Facilities for normal
pursuits
• Exposure to role models
Health professionals
• Best chance of survival &
best QOL
• Access to expertise (MDT)
• Access to computers/the
internet
• Age appropriate
equipment
• Contact with peers
• Service that just isn’t
about medical treatment
but addresses
psychological needs
Summary
• Wide variation in young people’s priorities
• Disparity between young people and health
professionals
• Young people’s views:
 Driven by personal experience
 Least disruption to ‘normality’ a priority
• Health professional’s views:
 Tended to be service orientated
 More likely to take a long-term view
WHAT are young people’s experiences of cancer care?
Personal experience
Katie Brooman
James Ashton
The Core
Consumer Group:
Tom Grew
Hannah Millington
Carol Starkey
Peer to peer interviews with young people about
their experiences of cancer care…
We then asked young people to think of a
headline…
• We grouped similar headlines
• We made spider diagrams through group
discussion
Eight key themes emerged
Life changing impact of diagnosis: ‘Cancer diagnosis made me grow up’
Provision of information: ‘I’m more than my cancer’
Place of care: ‘If I’d had known… I would have travelled there’
Role of health professionals :‘Cancer nurse tells mum to get out!!!’
Coping: ‘It’ll finish one day, treatment’s not forever’
Peer support: ‘Rehab[ilitation] buddies for cancer survivors’
Psychological support: Counselling for patients to cope’
Life after cancer : ‘The tumour’s out but what now?’
Thinking back to the ‘place of care project’. How
important do you think ‘quality of life’ is? (n=149)
Proportion of answers (%)
0
5
10
15
20
Survival and quality
of life and survival
are equally important
Quality of life is
less important
30
35
40
45
50
55
60
65
70
75
80
73.4%
Quality of life is
more is more
important than
survival
Survival is the
only important
thing
25
11.9%
10.5%
4.2%
Is it useful to have to have young people 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]
What sort of information do young people share
between themselves?
‘like things like safe sex... My doctor spoke to me
about my STD whilst one of my parents were in the
room**’
Trixxy diagnosed 18
Is it useful for young people to work as co-researchers?
‘…I have also enjoyed the Essence of Care project,
particularly interviewing other TYA – the unique connection
between two TYA who can share a cancer experience can
never be underestimated…’
Tom, CCG member
What this informed…
• Quality of life as important as survival
▫ Implication for primary outcome
• Eight key themes forms the basic framework for
the BRIGHTLIGHT Survey
• Working with young people adds value to study
• 1st round questionnaire of a Delphi survey
▫ Commencing Spring 2012
• Towards a definition of TYA cancer care
▫ Checklist for evaluating services
Essence of care research team
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Dr Lorna Fern
Professor Faith Gibson
Dr Catherine O’Hara
Susie Pearce
Dr Rachel Taylor
Dr Jeremy Whelan
NCRI CSG TYA CCG
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James Ashton
Katie Brooman
Tom Grew
Hannah Millington
Carol Starkey
Acknowledgements
We would like to thank
• Teenage Cancer Trust for funding the ‘Essence of
Care’ project
• Members of the NCRI TYA Core Consumer Group
• Participants & Steering Committee of ‘Find Your
Sense of Tumour’