Caring for Carers Delivering Support in a Language that Makes Sense An outcome Evaluation of an Outreach Model Authors: Ms Chanboramy (Ramy) Var Mr Roy Laube Mr Michele Sapucci

Special Needs of CALD Carers Carers generally share similar experiences of burdens and difficulties when caring for a relative or friend with a mental illness. CALD carers may face specific barriers: - Lack of understanding about Australian health care system - Lack of knowledge about the illness and treatment - Different beliefs about mental health and its treatment - High level of stigma - Changes in family support and environment - Language and cultural barriers - May have been exposed to torture and trauma Carer support is recognised as an essential element supporting someone in their recovery journey

The CALD Carer Support Program The CALD Carer Support Program: Funded by the Mental Health and Drug & Alcohol Office, NSW Health Program of the Transcultural Mental Health Centre (started in 2002) Through the Program cares are able to Communicate their needs in their own language Receive and share information, learn from other carers Access pathways to care to –TMHC Clinical Services –Other cares support services Gain and give emotional support; friendship, engagement in social activities by connecting with broader community

The CALD Carer Support Program. Cont’ How is it run? Employs 1 full-time Coordinator Recruits, trains and contracts sessional Bilingual Group Leaders (BGLs) 33 BGLs covering 14 language groups (15 new BGLs recently recruited- May’10) Conducts culturally and linguistically appropriate support groups for CALD carers “… When you speak your language with someone else from the same background, you speak what it is in your heart. However, when you speak in English, you tend to be another person, because it is not your language” (Greek carer) Who attends? –Families and carers from 14 CALD communities –34 support groups conducted across Sydney – carers are participating in monthly meetings –Meet once a month for 2 ½ hours

Carer Support Groups; language and geographical extension

Other Programs, Activities & Partnerships Community Awareness/ Education Sessions Mental Health Month Carers Week Schizophrenia Week CALD Carers End of Year Celebration CALD Carers Retreat 2008 & 2009

Evaluating the Program Objective: Evaluate outcome of participation for carers in Support Group Program Method: Individual semi-structured telephone interview with group participants Independent language and culture matched bilingual research assistants visited each group Four interviews conducted over a one-year period

Evaluating the Program. Cont’d Reported benefit of Carer Support program What were carers seeking from the groups? 1.Learn information about mental illness and treatment50% 2.Share experiences and learn from other carers 42% 3.Receive for the relative who is mentally unwell41% 4.Ventilate feelings in a supportive environment29% What did carers actually learn or gain? 1.Help with self care 83% 2.Information about illness44% 3.Help with care for relative27% 4.Learn about services 14%

Evaluating the Program. Cont’d Why do you keep coming to the group? 1.Fellowship / support 77% 2.Information56% 3.Other 7% Change in use of services for support? 1.Use health /welfare services 2. Self help

Evaluating the Program. Cont’d Made friends from the support group Increase in peer networking and support from attendance Talk to extended family about your relative’s illness Increased with participation Told friends about your relative’s illness Increased with participation

Comfort to tell people about loved one’s mental illness Early in attendance: I I I--XX----I I I I I I Never tell anyone I can tell anyone “Before I attended this group, I always felt ashamed as a carer and did not discuss my own problems with anybody” - Korean carer Veteran participants: I I I I I I I--XX----I I Never tell anyone I can tell anyone “We learned that mental illnesses could happen to anyone so we should not be ashamed of it” - Turkish Carer Evaluating the Program. Cont’d

Key Points Carers attend the group seeking information and help for their relative and themselves. They find the information very helpful, especially regarding welfare and other social support services. They learn the value of self care and start to prioritise their own welfare as well as that of their relative. They are grateful for the program in their own language. Evaluating the Program. Cont’d

Some make friends and find the peer support to be highly valuable. “I’ve learned to share my problems to minimise the pain, sorrow and anguish which tends to build up in me” - Greek carer. Over time, the stigma of mental illness diminishes and they are able to speak about their relative’s illness more comfortably with other people. “I’ve learned to share my problems to minimise the pain, sorrow and anguish which tends to build up in me” - Greek carer Key Points Evaluating the Program. Cont’d

Counselling for themselves - they are experiencing hopelessness, social isolation and a lack of social support Education on managing stress & anger management skills Education on communication skills & relationship building Self-care techniques Socialisation and engagement with the wider community Carers’ Needs

Carers’ Wants To know how to enhance consumer’s insight into their MH problem To know how to help consumers increase their motivation and self esteem To be part of consumers’ assessment so that they can have positive input To know know the effects and side effects of medications on consumers

Consumers having a relapse The lack of social interaction for consumers Feelings of resentment by consumers if involuntary treatment/ admission to hospital is necessary Consumers taking up smoking, gambling and the internet The mental well-being of other family members The welfare of consumer after carers pass away The marital life of consumers - whether to encourage them to get married and give birth or not, and if the next generation will inherit mental illness Employment opportunities for consumers Carers Are Worried About

Some Key Outcomes of the Program Improve carers access to services Facilitate carer-to-professionals communication and therefore, enhance use of and participation in existing services Reduce the sense of helplessness and anxiety Defuse anger, frustration, disappointment & misunderstanding among carers about service providers Improve mental health and quality of life for CALD carers The improved wellbeing of carers will also benefit the consumers.

A Wish List for the Future To train CALD carers in areas like: - Dealing with media - Consultancy and advice on policy, planning and development - Training delivery in collaboration with TMHC’s Clinicians To provide support to CALD carers living in regional and remote NSW via the use of new technologies (e.g. teleconference) To strengthen partnerships with mainstream carer organisations To have carers’ education and training programs made available in other languages and culturally relevant

Ms Ramy Var Coordinator, CALD Carer Support Program Mr Michele Sapucci MHPPEI Team Manager