improving Engagement of
Young People in Early
interventions: the EYE project
Dr Kathryn Greenwood
Department of Psychology, University of Sussex
Sussex Partnership NHS Foundation Trust
Co-applicants and Collaborators
Institute of Psychiatry
Sussex Partnership NHS Foundation Trust
University of Sussex, Psychology
Service User Research Forum SURF -Brighton
•First episode psychosis service users
•Providing consultation on research
project design and grant development
•Getting rid of jargon, using right
language, helping to share information
•asking service user led questions and
trying to answer these?
(Rose 2004; Mosavel et al. 2005)
What’s the problem with engagement?
Psychosis affects 7500 young people per year (375 in South
East) (The NHS plan: DoH 2000)
Often devastating consequences
• 25 years reduction in life expectancy (Parks et al 2006)
• Poor quality of life (Rossler et al. 2005)
• One third of premature deaths from suicide (Wiersma et al
1999, Bertelsen et al 2007)
Early Intervention in Psychosis in critical period improves
• Symptoms, function, course, outcome and suicide
(Nordentoft et al 2004; Garety et al. 2006; Melle et al.
Harris et al. 2008; Lester et al. 2009)
EIP improves outcomes in Sussex
Kavanagh, Taylor, Lukats, Greenwood, Whale 2010
Clinical Global Impression
Global Assessment of Function
80
5
4
DUP 3-12 months
3
2
DUP≤3months
1
Mean global assessment of function (+/-SEM)
Mean clinical global impression (+/-SEM)
6
DUP≤3months
70
60
50
DUP 3-12 months
40
30
20
10
0
0
Time (months)
Time (months)
What’s the problem with engagement?
25-30% of people disengage within 12 months
(Cotton et al. 2009; Polari et al. 2009; Turner ey al. 2009)
Even in National Lead EIP service only 70% are well
engaged at 12 months (Smith 2009)
Disengagement linked to younger age and other
associated factors (e.g. substance use/lack of
service knowledge) (Cotton et al. 2009; Schimelmann et al
2006; Krstev et al. 2004)
need more effective youth-focused service to
improve engagement and outcome in this group
But a similar proportion of people drop out
in Sussex
12 month outcome of 6 months referrals to EIP service
80
60
number of people
40
Series2
Non-engagers
Engagers
Series1
20
0
1
2
non-psychosis
psychosis
referrals
And there’s a desire to develop youth focussed
services
Headstart: Getting the fit right
A discussion briefing to investigate the
establishment of Headstart: an early
intervention and developmentally appropriate
mental health care model for young people in
England
Project Team: Nick Prendergast
Rick Fraser
Initial service user contribution – RDS PPI grant
Shaping development of research
question and design
Set up and facilitation of SURF group
Shaping methodology around recruitment
social-educational sessions, peer researchers to aid access
to those who don’t engage (and recently also ethics flyer)
Contributing to dissemination (training, leaflets,
presentations)
Emphasising important outcomes (isolation and
suicide).
Research Question
What are facilitators and barriers to
engagement in EIP?
What changes should be made to services
based on knowledge of engagement?
Can youth-focussed service adaptations be
effectively implemented to improve
engagement and address the specific needs
of those who disengage from EIP service?
Phase 1- Focus Groups
Surrey, Sussex and Kent
12 x 6-8 people
Siblings/Parents
Young People
Young Service
users
(Purposive sampling for gender, engagement, status, family, substance use, severity)
Phase 1 - Outcome
Thematic analysis leading to
• Set of themes around facilitators and barriers to
engagement from each perspective
• Set of suggested service adaptations
Phase 2 – Delphi Consultation
& Implementation Science (Tansella and Thornicroft 2009)
Service managers,
clinicians,
commissioners
Phase 2 - Outcome
Service adaptation
Engagement Booklet
Training (1 month)
Website
(Tansella and Thornicroft 2009)
SURF suggested service adaptations
Provision and use of Information
• Advertising and social educational sessions
Approaches to engagement
• Social networking, sites, texting, broader
health
and youth sub-culture awareness
Involvement of young people in their services
Phase 3 – Outcome Evaluation
Proportion of clients referred during a 6 month period, who
drop out of service in the subsequent 12 months pre and
post intervention (N=250)
Measures of quality of engagement (i.e. DNA rates,
medication use, uptake of interventions)
Qualitative experience of the service adaptations from
service user, carer and clinician perspective (n=18 -24)
Benefits
Improved engagement options in EIP
Training, consultancy and resources
• Better skilled staff
More effective and efficient intervention
• Fewer DNA’s
Better service user and staff satisfaction
Cost effectiveness
Outcomes to inform larger national Randomised
Controlled Trial (RCT)
Phase 3 – Evaluation of outcome
-6 months
Start of target pre intetvention referral period
0 months
End of target referral period
Study
Start
12 months
End of 12 months for follow up period
16 months
Training for Intervention
17 months
Start of target post intervention referral period
Intervention
Start
22 months
End of target post intervention referral period
34 months
End of 12 months for follow up period
Study
End
Thanks to the
Research for Patient Benefit Programme
£207, 000
Thank You
www.sussex.ac.uk/spriglab