The Challenge – in context of

a research question

Janet E McDonaghSenior Lecturer in Paediatric and Adolescent Rheumatology

Outline

Contexts

• …of young people

• …of long term health conditions

• …of 2016

“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 GatesThe burden of non-communicable

disease among young people globally

has not improved since 1990 despite

gains in other areas

May 2016

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)

– 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

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

School/College/university

Self care

LeisureEmployment

Household

Chores

Rest

Young People as occupational beings

Training

volunteering

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

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)

Outline

Contexts

• …of young people

• …of long term health conditions

• …of 2016

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

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

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

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

“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

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

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

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

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 milestonesPinquart M 2014 (meta-analysis)

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

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

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 rateDiaz-Mendoza et al 2015 (Spain)

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)

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

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

Health Workforce Competency

to address vocational issuesSkill

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 adolescentsBUT• limited knowledge and confidence to do so. • Significant unmet training needs Shaw KL et al 2006

27

Transferable Skills in the Healthcare Setting

– Communication

– Negotiation

– Goal setting

– Problem solving

– Decision-making

– Self-management

– Organisational

– Information seeking

– Health care utilisation

– Disclosure

Outline

Contexts

• …of young people

• …of long term health conditions

• …of 2016

Sawyer S, Lancet April

2012;379:1630-40

35

Key Data on Adolescence 2011

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

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)

Research Focus

The role of health professionals in

improving educational, vocational and

employment outcomes for young people with

long term health conditions

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

First, need to identify key stakeholders…and key

data!