Jean Nee, Ellen Brady, Ann Sheridan UCD School of Nursing, Midwifery and Health Systems

1. 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

2. 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

3. 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

4. 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: Body • Psychological: Mind • Sociocultural: Society

5. 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) .

6. 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.

7. 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

8. 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).

9. 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

10. Research aims • To establish, implement, and evaluate a supported socialisation programme • To determine the programme’s impact in terms of: • improved social functioning • symptom reduction • enhanced self-esteem • To explore the feasibility of establishing ongoing programmes

11. The participants • €20 stipend paid monthly to all • 192 participants assigned randomly to groups • Stipend only (n=64) • Stipend + consumer partner (n=64) • Stipend + nonconsumer partner (n=64)

12. 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 3-points

13. 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

14. 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

15. 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

16. 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.

17. 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? ….

18. 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

19. 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

20. 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

21. Socialisation of researchers by participants • Local Tips: on best buses and shops • Politics: US elections means keeping up-to-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

22. `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

23. 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

24. 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

25. 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

26. 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.

27. 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.

28. 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)

29. Outcome Measures Secondary (continued) • Social and Emotional Loneliness Scale for Adults, Short Form (DiTommaso et al 2004) • Network Assessment Instrument (Wenger 1994) • Readmission Rates