A multi-site study: What do people say helps their recovery?

A multi-site study: What do people say helps their recovery? Dr Barbara Tooth NSW Institute of Psychiatry Dr Kalyanasudnaram & Helen Glover Australia

Rationale for the research Simply, for the original study, no-one in Australia had conducted research asking people to tell their story of what helps

Methodology Two Independent Studies – • Queensland (1997) • USA (2003) • Italy ( current)

Methodology • Part 1 Open ended question • Part 2 Specific questions developed from focus groups, literature & experience • Part 3 Questions about the role of the MHS • Part 4 Demographic data

QUESTIONS 1. • Can you tell me about your journey of recovery? 2. • What do you understand by the term recovery? • What is it about you that has helped? • How and when did you know that you were in recovery? • Other factors : what was helpful, what was not, spiritual aspect; understanding the illness; health professionals; medications; stigma; adjustments • What was it about your services that specifically contributed to your recovery (USA and Italy only)

Part 3 Questions • What is it about the MHS that has been most helpful? • Have you been able to participate in your treatment? • Have you been able to participate in your medications? • Did the MHS help you connect to the wider community? • Did the MHS help you with your relationships with your family? • How could the service be improved?

Queensland Age range 21-60 mean 36 GAF 80-89 62% 70-79 27% <70 11% Admissions range 0-30 mean 6 Work F/T 14% P/T 21% Voluntary 7% Unemployed 58% Medication Yes 82% USA Age range 35-67 mean 51 GAF 80-89 15% 70-79 20% <70 65% Admissions range 1-24 mean 7 Work F/T 7% P/T 28% Voluntary 29% Unemployed 36% Medication Yes 100% Demographics

Overall results USA Determination 95% Spirituality 86% Medication important 81% Therapist helpful 81% Self-help/responsibility 76% Medication side effects 76% *Being occupied 76% (B) Psychiatrist helpful 71% MHP unhelpful 71%

Overall findings USA *Struggle to recover 67% (B) *Stigma hindered 67% (B) *Consumers helpful 66% (M) Family important 57% *Friends important 57% Managing illness 57% Understanding illness 57% Work important 57%

Queensland Determination 82% Responsibility 68% Manage illness 67% Medication SE’s 65% MHP unhelpful 61% Friends 58% Stigma hindered 53% Work important - USA Determination 95% Responsibility 76% Manage illness 57% Medication SE’s 76% MHP unhelpful 71% Friends 57% Stigma hindered 67% Work important 57% Similarities with Qld

Queensland Understand illness 81% Being occupied 32% Spirituality 49% Helpful MHP 56% Psychiatrist helpful - Accept medication 54% Struggle to recover 42% USA Understand illness 57% Being occupied 76% Spirituality 86% Therapist helpful 81% Psychiatrist helpful 71% Meds important 81% Struggle to recover 67% Differences

Additional questions • Turning point:(Qld in brackets) Internal 48% (44%) External 57%* (25%) * 19% identified an external event that triggered internal awareness

What is it about the MHS that has been most helpful? Trends suggest: • Respectful 50% • Practical help 48% • Available 40% Yet: • Unsolicited negative comments 45%

What is interesting? Significant similarity across both studies that reinforces the internal and external conditions that help or hinder people in their ongoing recovery: • Internal conditions that supports people in their ongoing recovery AN ACTIVE SENSE OF SELF

What is interesting? • External conditions that support self-directed recovery Family / friends Medication Being occupied MHP’s – use their humanity (respect, dignity, listen, equality, tried to understand what is important for person)

What is interesting? • External conditions that hinder self-directed recovery: Medications – side effects MHP – don’t use their humanity (use covert threats, try to put their ideas onto the person “you should”, perceived power imbalance, hide behind professional barrier)

What is interesting? • Over 100 factors reinforcing the complex, diverse and individual nature of the recovery process • Implications for services • Implications for professionals – MHP can both help or hinder a person’s self-directed recovery and it is becoming clearer about what helps and what does not

Some parting comments • We need to remember the messages of over a decade ago from Deegan, Fisher and others. • MHS and MHP cannot put their values onto recovery, take it over or own it. • Recovery is something people do and it is their job to recover in their own unique and personal way. • It is services and professionals task to understand what each person wants from us, and understand how we can help facilitate their self-directed journey or recovery

A multi-site study: What do people say helps their recovery?