Supported Socialisation for People
with Serious Mental Illness in Ireland:
First Reflections on a
Randomised Controlled Trial
Jean Nee, Ellen Brady, Ann Sheridan
UCD School of Nursing, Midwifery
and Health Systems
BSA Conference. Wellbeing and Recovery:
Connecting Natural and Social Worlds
28-30 March 2008
Serious mental illness (SMI) as defined in 1987
and 1990 by the National Institute of Mental Health
Task Force (Rothbard, Schinnar, Goldman 1996)
• Persistent: lasts for 12 months or more
• Severe: limits functioning
• activities of daily living
• social interaction
• concentration
• adaptation to environmental change
• Pertains to Adults
• Children: Serious emotional disturbance
Changes in the treatment and conceptualisation of
SMI in psychology include:
(Coursey, Alford, Safarjan 1997)
• Perspective:
from pathology to competence
• Understanding the relationship between:
nature (biology)
nuture (psychosocial)
• Ideas about causes of SMI
– biological and psychosocial factors are part of a
system of mutually influencing interactions
TenHouten (2007) proposed that:
• Emotions are
– influenced by biological and social factors
– used for coping with and adapting to social
situations
• A general theory of emotions requires
three levels of analysis:
– Biological:
– Psychological:
– Sociocultural:
Body
Mind
Society
• The study of emotions offers a way to
understand the relationship between
emotions, culture and social structure
particularly in terms of power and
inequality
(Barbalet 2001; Turner & Stets 2005) .
• In Ireland, in the past 40 years,
the number of residents in psychiatric
hospitals has decreased from
19,801 in 1963
to 3,658 in 2003
• Although state policies advocate
community oriented care and treatment of
mental illness, which are recognised as
superior to institutional approaches,
problems persist.
For example,
• few natural community structures
exist to involve people in shared
social activities with others
– Particularly for people with serious
mental illness who are re-entering their
community
• after prolonged or frequent
hospitalisation
• or those who have avoided
hospitalisation
Supported socialisation is defined as:
• “the provision of structured opportunities and
supports that enable people with psychiatric
disabilities to participate in the naturally
occurring rhythms of community life within the
context of caring, reciprocal relationships in
which they experience themselves as having
something of value to offer others”
(Davidson et al. 2004:458-459).
Socialisation Study: A randomised controlled
trial using CONSORT principles
Inclusion criteria
– serious or enduring mental illness
– client of a state mental health facility
– considered by clinicians to have low
social functioning
– well for preceding 6-months
Research aims
•
•
To establish, implement, and evaluate
a supported socialisation programme
To determine the programme’s impact
in terms of:
i. improved social functioning
ii. symptom reduction
iii. enhanced self-esteem
•
To explore the feasibility of establishing
ongoing programmes
The participants
• €20 stipend paid monthly to all
• 192 participants assigned randomly to groups
1. Stipend only (n=64)
2. Stipend + consumer partner (n=64)
3. Stipend + nonconsumer partner (n=64)
Participants will be asked …
• To spend €20 stipend on social activities
• If paired with volunteer partner, to spend
2-4 hours per week in shared activity
• To attend monthly support meetings
• To participate in study for 9-months
• To complete a battery of instruments at 3points
Reflections on the Pilot and
Recruitment Phases of the RCT
• Tested instruments
– Revised the Social Functioning Scale
• Used a semi-structured interview to obtain
participant feedback on:
– Completing instruments
– Expectations and worries about the study
Participant expectations
• to have someone to talk to other than just saying
hello and commenting about the weather … just
to have a conversation with someone
• to go for a walk somewhere nice with someone
• to play snooker with someone or watch soccer
or rugby
• to have someone to go to the shopping centre
with
• to go to the concert hall
• to expand my social circle
• to move on to the next stage
Participant worries
• “not fitting in”
• “what if I don’t like them? Or they don’t like me?”
• “being paired with someone you don’t know is
unnatural”
• having to go out to meet someone
– it would be better to meet the partner in a group for
the first meeting
• having to out at night
• being paired with someone of the opposite
gender
One person’s reasons for participating
• To make me go out
• At a conceptual level, I always cooperate with
research because it will help others
• It will keep me thinking about where I am going
and remind me of the things I used to do and
enjoy
• It is hard to draw the line between laziness, the
illness and the medication
– Note: this reminded me of the lyrics to Don McLean’s
Crossroads.
CROSSROADS
by Don McLean
… I’m all tied up on the inside,
No one knows quite what I’ve got;
And I know that on the outside
What I used to be, I’m not anymore.
….
Can you remember who I was? Can you still feel it?
Can you find my pain? Can you heal it?
….
Money as a socialisation issue
• People are not participating for “the
money”!!!
– Do you know how much it costs to go out?
– `We are supposed to go out on €5 a week?’
– Are we to pay for the volunteers when we go
out?
• Consumer volunteers need funding too
– economically similar to participants
Presence of two researchers
• differing in terms of culture, age and/or
gender works extremely well in interviews
and in recruiting
– particularly if researchers have a mutual
respect and fondness for each other
Presenting information in small groups
allows people
– To listen to what is presented
– To observe and assess the presenters
– To relax
– To have time to think and to ask questions
– To have a laugh
– To be a bit silly
Socialisation of researchers by
participants
• Local Tips: on best buses and shops
• Politics: US elections means keeping upto-date in order to carry my end of the
conversation
• Geography: location of the Wisconsin to
Canadian provinces and/or location of
towns like Chippewa Falls to other cities
• Social History: immigrant populations
`And what about when the project ends,
Seamus? Are we back to square one?’
• Supports are in place to aid participants
• Although we cannot predict the future we
hope to continue to move forward
– Plan to continue this research
– Future projects to involve consumer
collaboration based on the experiences
of this project
Example of what we hope to achieve
• Consumer Club Experience
– Located off dark alley in building reminiscent
of the gloomiest 1950s Irish dancehall
– Welcome by people inside erased the outside
experience
– How good recovery is!
• working full time
• hiking in Dublin mountains on weekends
• attending Friday night consumer club
Supported Socialisation Study
• 9-month randomised controlled trial
• 3 intervention groups
– Stipend only
– Stipend + Consumer volunteer partner
– Stipend + Nonconsumer volunteer partner
• Aim to establish, implement and evaluate a supported
socialisation programme and establishing the feasiblity
of an ongoing programme
• Issue of exploring the relationships between emotions,
culture and social structure particularly, in terms of power
and inequality
Thank you to …
• The potential participants for making this
presentation possible
• You, the audience for listening
• The Health Research Board for funding
• St John God of Services
References
• Barbalet JM (2001) Emotion, Social Theory, and Social
Structure: A Macrosociological Approach. Cambridge:
Cambridge University Press.Coursey RD, Alford J,
Safarjan B (1997) Significant advances in understanding
and treating serious mental illness. Professional
Psychology: Research and Practice 28(3):205-216.
• Davidson L, Shahar G, Stayner DA, Chinman
MJ,Rakfeldt J, Tebes JK (2004) Supported socialization
for people with psychiatric disabilities: Lessons from a
randomized controlled trial. Journal of Community
Psychology 32 (4): 453-477.
References
• Rothbard AB, Schinnar AP, Goldman H (1996) The
pursuit of a definition for severe and persistent mental
illness. In SM Soreff (Ed) Handbook for the Treatment of
the Seriously Mentally Ill. Seattle, WA: Hogrefe and
Huber, pp. 9-26.
• TenHouten WD (2007) A General Theory of Emotions
and Social Life. London and New York: Routledge Taylor
and Francis Group.
• Turner JH, Stets JE (2005) The Sociology of Emotions.
New York: Cambridge University Press.
Outcome Measures
• Primary
– Social Functioning Scale, Modified (Birchwood et al.
1990)
• Secondary
–
–
–
–
Beck Depression Inventory (Beck et al 1961)
Mania Rating Scale (Young et al 1978)
Rosenberg Self-Esteem Scale (Rosenberg 1965)
Scale for Assessment of Positive Symptoms (SAPS)
(Andreasen 1983)
– Scale for Assessment of Negative Symptoms (SANS)
(Andreasen 1984)
Outcome Measures
Secondary (continued)
• Social and Emotional Loneliness Scale for Adults, Short
Form (DiTommaso et al 2004)
• Network Assessment Instrument (Wenger 1994)
• Readmission Rates