Teenage and young adult (TYA) cancer services: who, where and what?
Dr Rachel Taylor PhDSenior 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
WhereWhat
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
Child Parent
Paediatric health care
Health professional
Patient
Family
Adult health care
Health professional
Teenage & young adult health care
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 prioritiesYoung 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?
The Core Consumer Group:
James Ashton
Hannah Millington
Katie Brooman
Tom Grew
Carol Starkey
Personal experience
Peer to peer interviews with young people about their experiences of cancer care…
•We grouped similar headlines •We made spider diagrams through group
discussion
We then asked young people to think of a headline…
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?’
Eight key themes emerged
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 (%)
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
• Dr Lorna Fern• Professor Faith Gibson• Dr Catherine O’Hara• Susie Pearce• Dr Rachel Taylor• Dr Jeremy Whelan• NCRI CSG TYA CCG
▫ James Ashton▫ Katie Brooman▫ Tom Grew▫ Hannah Millington▫ Carol Starkey
Essence of care research team
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’
Acknowledgements
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