Slides from an event held on December 17, 2016 to investigate the potential uses in healthcare for cognitive computing technologies. Janet McDonagh asking specifically which issues affect young people with longterm health conditions, with a view to understanding how cognitive computing could help.

1. The Challenge
– in context of
a research question
Janet E McDonagh
Senior Lecturer in Paediatric and Adolescent Rheumatology

2. Outline
Contexts
• …of young people
• …of long term health
conditions
• …of 2016

3. “Young people are the
world’s greatest untapped
resource”
Ban-ki Moon
“For too long adolescents have been
the forgotten community of the
health and development agenda. We
cannot afford to neglect them any
longer.”
Melinda Gates
The burden of non-communicable
disease among young people globally
has not improved since 1990 despite
gains in other areas
May 2016

4. MAHSC Adolescent and Young Adult Health Project
Aim: to improve health outcomes
for adolescents and young adults in Greater
Manchester
MAHSC steering group: Janet McDonagh, Peter Clayton, Steve
Ball (adult medicine), Louise Theodosiou (CAMHS), Alison
Yung (Psychiatry)
Project Coordinator: Aysha Khan (starting December 2016)

5. – Ethnographic study of HCP and managers
– Wide range of definitions!
– Five conceptual dimensions:
(i) bio-psycho-social development and holistic care
(ii) acknowledgement of young people as a distinct group
(iii) adjustment of care as the young person develops
(iv) empowerment of the young person by embedding health
education and health promotion
(v) interdisciplinary and inter-organizational work
Farre A et al 2016

6. 6
Main Tasks of Adolescence and
Emerging Adulthood (10-24 years)
Main Tasks of Adolescence and
Emerging Adulthood (10-24 years)
1. To consolidate his/her
identity (including sexual)
2. To establish relationships
outside the family
3. To achieve interdependence
with parents
4. To find a vocation

7. 7
School/College/university
Self care
Leisure
Employment
Household
Chores
Rest
Young People as
occupational beings
Training
volunteering

8. 8
Vocation Development
Childhood Fantasy
Pre- adolescence Tentative
Mid –adolescence - early vocational plans
- development of an
educational trajectory
- early notions of vocational
future
Late adolescence Realistic development of
vocational capability

9. Adolescent and Young Adult
Transitions
Developmental
stage
Vocational
Transition
Examples of other concurrent
transitions
Early
Adolescence
10-13
Primary to secondary Pubertal
Social
Health self-management
Mid
Adolescence
14-16
School to college Pubertal
Social
Health self- management
Late
Adolescence
17-19
College to
HE/Employment/
training
(From parental home)
Paediatric to adult health care
Health self-management
Emerging
adulthood
20-24 years
HE to employment (Independent living)
Health self-management
(Parenthood)

10. Outline
Contexts
• …of young people
• …of long term health
conditions
• …of 2016

11. Young Person with a
long term health condition
• Young person
• Their parents and
siblings
• Their extended family
• Friendship circle
• GP
• School nurse
• Paediatrics - various
• Adult medicine - various
• Social Care
• Youth Services
• Voluntary sector
• Teachers –
secondary/HE/FE
• Employers
• Careers services

12. Additional Hurdles to workforce
participation for young people with
long term health conditions
• Less exposure to world
and role models
• Social isolation
• Late joining of peer
group
• Undeveloped self-
concept
• Lower expectations
• poor transition planning
• Less work experience
• Career immaturity
• Discriminatory attitudes
• Limited knowledge of
resources and help
available
• Transport
• Benefit system

13. 13
Vocational ReadinessVocational Readiness
• Educational achievement
• Prior work experience
• Communication skills
• Expectations of young person,
family, professionals
• Psychological e.g. self-esteem
• Knowledge re: resources, rights
• Societal attitudes towards ill
health and disability

14. 14
I don’t look 14 and when I go into the
hairdresser, they are alike”Oh, no, I’m sorry
you have to be over 13 and I’m like yeah I
am, I’m 14’ but they don’t believe you”
Young People with JIA Shaw KL 2006
•“I went to the career advisor
and told her what I wanted to
do and she said “don’t
bother”. “One person saying
“NO” just puts you totally off”

15. 15
“If they find out you’ve got a
disability you never hear from
them again”
“They (parents) try to hold
on to you because you
have arthritis”
Young People with JIA Shaw KL 2006

16. 16
Advice from Young People
for Young People
• Develop selective hearing”…
• ”it’s personal. No one else can tell you what
you can do and what you can’t”
“Choose what’s
right for you”
Young People with JIA Shaw KL 2006

17. 17
What Young People wanted from
professionals
Someone “trained a bit
more about arthritis and
adolescence”
“I think we need
encouragement as much as
anything else”
“someone who knows
what they are talking
about”
Young People with JIA Shaw KL 2006

18. Adolescent Health and Adult
Education and Employment:
a systematic review.
Poor health in adolescence associated with:
• poorer education
• Poorer employment outcomes in adulthood
• Evidence stronger for mental vs physical health
conditions
• Less evidence available for physical health conditions
with mixed findings
Hale DR et al, 2015

19. 19
Social vs Vocational Success of
young people with childhood onset
disease
Compared to controls:
Social success - similar
Vocational success – lower
Maslow GR 2011 (USA)
Lower rates of mastering social and vocational
developmental milestones
Pinquart M 2014 (meta-analysis)

20. Health Transition Outcomes
• Delphi process involving health professionals
• 10 final outcomes
Individual Social Health service
Achieving optimal QoL Having a
social network
Attending medical
appointments
Disease knowledge Having a medical home
Medication knowledge Avoidance of unnecessary
hospitalisations
Self-management
Adherence to medication/Rx
Understanding health
insurance
Fair C et al, 2015? vocational outcomes
? psychological outcomes

21. Transition Outcomes:
Vocational
Eg: CF Post transfer
• NO change in clinical status
BUT
Young people NOT in school/job
7.9% pre vs 31.5% post (p=0.005)
Dugueperoux I et al 2008

22. 22
Vocational Developmental Delay
eg rheumatology
• Employment (Juvenile Idiopathic arthritis JIA)
Reduced:JIA: Minden K 2009; Jetha A 2015;
SLE: Garris C 2013
Same as controls:Arkela-Kautiainen M 2005;
Gerhardt CA 2008
• Childhood onset rheumatic disease
↑ Students vs age-matched controls BUT ↓
employment rate
Diaz-Mendoza et al 2015 (Spain)

23. Early Work Experiences
• 18-30 year olds (n=143) , JIA and SLE
• 59% Employed
• 40% - absenteeism, job disruptions, productivity
loss
• ↑ likelihood of absenteeism: ↑ job control and ↑
self disclosure (NB not older adults) and ↓ social
support
• ↓ productivity loss:↓ fatigue and ↑ job control
• ↑ job disruptions vs older adults
Jetha A et al, 2015 (Canada)

24. Expectations of Others
Young adults with
rheumatic disease
↑ Likelihood of
employment:
• ↑ independence
• ↓ perceived
overprotection from
parents/siblings,
partners
Jetha A 2014
Low expectations of
teachers, careers
advisors, potential
employers perceived
by young people with
JIA
Shaw Kl et al, 2006

25. Employment Readiness skills
YP with physical disabilities vs peers
Mock job interview
• Significant differences
− “tell me about your self”
− “How would you provide feedback to someone not
doing their share”
− A problem solving scenario
− Voice clarity and mean latency
Work place role play performance
• No difference
Lindsay S et al 2014

26. 26
Health Workforce Competency
to address vocational issues
Skill
Very low/low
Knowledge
Very low/low
Importance
High/very high
Rheumatology
professionals
32% 41% 91%
Paediatric
Hospital staff
41% 36% 75%
McDonagh JE 2004, 2006
National Survey OTs:
• an appropriate profession to address the vocational needs of adolescents
BUT
• limited knowledge and confidence to do so.
• Significant unmet training needs Shaw KL et al 2006

27. 27
Transferable Skills in the
Healthcare Setting
– Communication
– Negotiation
– Goal setting
– Problem solving
– Decision-making
– Self-management
– Organisational
– Information seeking
– Health care utilisation
– Disclosure

28. Outline
Contexts
• …of young people
• …of long term health
conditions
• …of 2016

29. Sawyer S, Lancet April
2012;379:1630-40

35. 35
Key Data on Adolescence 2011

36. 36
“Context is Everything”
2014 CBI Survey
Employers dissatisfied with school
leavers’:
• self-management and resilience
skills (61%)
• attitude to work (33%)
• work experience (55%)
• BUT
• 96% satisfied with their IT abilities

37. Work and Health Joint Unit (2015-)
• Dept of Work and Pensions
• Dept of Health
• ? Education?
Don’t stop me now: supporting young people with
chronic conditions from education to employment.
Bajorek Z, Donnaloja V, McEnhill L. (2016)

38. Research Focus
The role of health
professionals in
improving educational,
vocational and
employment outcomes
for young people with
long term health
conditions

39. Examples
of Research Questions
• How is vocational readiness currently being addressed
in the care of young people (10-24) with long term
health conditions
• How is this perceived by young people, their parents
and the education and health professionals involved?
• Can a vocationally focussed intervention involving
health professionals and education colleagues prevent
associated vocational morbidities in late adolescence
and emerging adulthood and improve quality of life for
young people

41. First, need to identify
key stakeholders…and key
data!