Support Services for Family Needs Theme: Improving health care: from fragmentation to integration. Dr Cheah Yee Chuang MBBS (Malaya) M. Med. (Psy.) UKM M. Sc. (Psy.) UNSW Australia Deinstitutionalization, 1950s Care for persons with serious mental illness (SMI) shifted from custodial to community settings Individuals with SMI require treatment, rehabilitation and support to function in the community These services (e.g. medical, social services, housing, etc.) are provided by different agencies A mechanism is needed to integrate and coordinate this care. Two organizational mechanisms evolved in 1970s to address these: 1. Case management: coordination and brokerage of services 2. Assertive community treatment (ACT): integrate services through a direct provision of treatment, rehabilitation and support services by a multidisciplinary team Hospital-based Community Psychiatric Services Provides acute home care, assertive home care, and follow-up of difficult cases. Include elements of psycho-education, family- based intervention, work-based intervention and illness self management skills. Home care services: Operational areas ZON 7 ZON 2 20 Km from Hosp. Ipoh Garden, Bercham, Sungai Siput. 20 Km Kg. Simee, Canning from Hosp. Kuala Garden, Tasek, Kg. Kangsar. Karai, Kati, Tawas. Lubok Merbau, Sayong, Padang Rengas, Manong. ZON 1 ZON 6 Chemor, Kanthan, Tg. Rambutan, Ulu Kinta, Ipoh City Centre, Tambun, Batu 8, Klebang Silibin, Buntong, Fair KUALA Restu, Klebang Jaya, Park, Falim. KANGSAR Tanah Hitam, Taman Perpaduan, Bercham Raya, Taman Pakatan ZON 3 Jaya. Manjoi, Jelapang KINTA Pasir Pinji, Pasir Putih. ZON 5 ZON 4 Gunong Rapat, Ampang, Menglembu, Lahat, Taman Cempaka, Gopeng, Pusing, Batu Gajah, Tg. Kota Bahru, Kuala Tualang, Tronoh, Dipang, Kampong Jeram, Kledang, Bukit Merah, Simpang Pulai, Kg. Kuala Pari. Kepayang, Kampar. Acute Treatment: Offer an alternative to hospitalization Prevent harm by risk assessment & risk management Develop alliance with patient and family Prompt treatment to control disturbed behavior & suppress symptoms Connect family and patients with follow up resources Psycho education Multidisciplinary approach Assertive community treatment (ACT) Dealing with severe mental illness with complex needs Schizophrenia, mood disorder, organic disorder, with . Disability . Unable to care for self independently . Cannot sustain relationships . Symptoms – current or enduring . Recurrent crises and frequent admissions . Significant risk to self and others Needs of People with Mental Disorders © 2001 Functionality : New Goal in Treatment Recovery Remission Response Adapted from Weiden et al, J Clin Psych 1996; 57: 53-60 Impact of mental illness on family Family members are bonded physically and emotionally Burden of care: ◦ Objective burden ◦ Subjective burden Family require appropriate and sufficient education , training and emotional support for their care-giving role. Burden of care: Objective burden Behavioural disturbances with disruptive effects on family life and household routines Excessive smoking Poor personal hygiene Damage to household property Sleep reversal pattern that may keep household awake Assaultative or abusive behaviour Socially offensive or embarrassing behaviour Mood swings and unpredictability Negative symptoms of amotivation or anhedonia Burden of care: Objective burden Patient’s rejection of medications Time and energy in supporting patient to get treatment and adhere to medications Social isolation Financial cost of the illness and economic strain Burden of care: Subjective burden Emotional costs associated with each objective burden Grief unfulfilled life expectations for the pre-morbid personality failed aspirations of someone they love Feelings of stigmatization Worries of ageing parents about the future of the mentally child who will surely outlive them Families’ effects on patients High expressed emotion (EE) in families (Vaughn and Leff1 ) Hostile criticism or emotional over-involvement Predictive of a greater tendency to relapse in schizophrenia In Vaughn’s unpublished thesis, the better clinical outcome associated with supportive comments and emotional warmth expressed by relatives towards the patient2. 1. Vaughn C. Leff J. The influence of family and social factors on the course of psychiatric illness. A comparison of schizophrenic and depressed neurotic patients. Br J Psychiatry. 1976;129:125–137. 2. Falloon IRH. Expressed emotion: current status. Psychol Med. 1988;18:269–274. Cochrane Systematic Review on Family Intervention (Pharoah F et. al, 2007, Level 1) Improved compliance with medication (NNT 7) Decrease relapse rates (NNT 8), Reduced hospital admission (NNT 8) Other outcomes: • Less negative EE • Reduced feeling of blame • Greater adaptability • Better intra-family communication Clinical practice guidelines: Management of Schizophrenia in adults (2009) Family intervention is an integral part in the psychosocial management of schizophrenia It aims to improve family atmosphere and functioning, provide emotional support to family members and help with limits setting. Recommends that family intervention should be make available to all families of people with schizophrenia (Grade A). http://www.moh.gov.my http://www.acadmed.org.my http://www.psychiatry-malaysia.org Garispanduan program intervensi keluarga bagi pesakit mental (2001), Kementerian Kesihatan Malaysia. Family intervention program (FIP) refers to helping the family members to cope better with a sick member who is suffering from a mental illness. The family member is taken as an ally in treating the mentally ill. Family Intervention program . Engagement Enlist family members in active management of patients, Build on the strength available in the family . Communication Training . Education . Problem solving Engagement: 1. Carers: Who will hold and supervise medications? Who will bring patient for follow-up? 2. Patient: Agree that carer will supervise medication, and attend follow-up. FIP: 2. Psychoeducation In Malaysia, a psychoeducational package is available in five training modules covering aspects of illness, treatment and side effects of medications, role of the family, maintaining wellness and managing crisis. Behavioural tailoring Is helping consumers fit taking medication into daily routines by building in natural reminders, which improve medication adherence and can prevent relapses and rehospitalization. Illn ess ma nag em ent Relapse prevention training teaching consumers how to recognize situations that trigger relapses and the warning signs of a relapse developing a plan for responding to those signs Mengenali tanda-tanda amaran awal penyakit ahli keluarga anda.. Tanda amaran awal adalah: 1._________________ 2. _________________ 3.__________________ Jika saya melihat tanda-tanda ini, saya akan menghubungi_________________, no. talipon________________. Modul Kemahiran Kesihatan Mental Kumpulan Sokongan Keluarga Kinta Alliance for Mentally Ill Kinta Action on Mental Health Issues National Alliance for Mentally Ill (NAMI): Principles of helping families come through trauma 1. The basic focus in the course is on the family member, not the ill person 2. Encouraging families to regain primacy of their own lives 3. Expressing anger and grief: the crux of self care 4. We teach empathy as the means of gaining acceptance of loss 5. Because we are family members, we can help each other to let go Family support group movement . Self help group, initiated by Malaysia Mental Health Association (March 2003) . Equal partners in care delivery . Aims towards promotive, preventive and recovery oriented care . Aims to bring about best practices in care Benefits of support groups . Opportunities for disclosure . Empathic connection . Shared goals . Psychological adjustments . Direct benefits related to needs . Demystify illness The Changing Needs of carers Onset of Schizophrenia P R O Understand Angry at What to do Feel sad Want to help B illness lack of L with voices Feel isolated others Don’t know services E etc M what to do N Support with Share E Assist with Political Information subjective knowledge E Objective action Basic coping burden from D burden personal S experience O L Support group U Education Advocacy T Support Help others I group O N Family support groups: . SELF HELP GROUPS • Emotional support • Information provision Help increase knowledge on illness and services, demystify illness, enhance coping and problem solving • Advocacy Potential for power and influence • Education – psychoeducation and family education 1. Majority are in the productive age of 20-40 years. 2. About 70% were never employed or unemployed at the time of registration. Supported employment: Individual Placement & Support . Rapid job search rather than extensive pre- vocational assessment and skills training (Job search) . Attention to patient preferences (Job match) . Ongoing support and on going training for the job without a time limit (Job coach) From “Family Rejection” to “Patient living with family and working in the community” Encik CCK 33 years old Chinese Single Man, odd jobs on & off Refuses to live with family past 9 years (he lived in a garage behind a shop) Felt that his mother loved his brother & sister more than him Refused to greet his family even if he met them in town Hospitalization Earlier on treatment in Jelapang Health Clinic Defaulted treatment 2 years Disturbed public & public made police report and he was admitted Family intervention Try to the