Capacity Building: Iran Experience of Family Psychoeducation Yasaman Mottaghipour, Ph.D

Iran’s Mental Health Catchment area Community Services General hospital Psychiatric hospital Centers for chronic patients/rehab centers Beds : 7000 based on Mental Health Atlas 2011 Beds: 4350 residential facilities 400,000 severe mental disorder

Literature Significant research and guidelines available Family intervention programs for families of patients have not been incorporated into routine mental health services The gap is greater in developing countries with different cultural values and scarcity of available resources

Literature In Iran, limited services for psychiatric patients and their families in the community The main burden of care lies on families of patients Developing a program and selecting appropriate and feasible services for families of patients becomes a necessity No specialized services for patients with first- episode psychosis and their families in Iran

Overview Research Studies Training & Supervision Resources Capacity Building Our Challenges

Carer’s Experience and Psychological Well-Being of Families of Patients with Severe Mental Disorder in Iran: Family Education Program Y Mottaghipour, J Shams, N Beyraghi, M Samimi, F Khodaeifar Shahid Beheshti University of Medical Science Tehran, Iran

Family Education in Two Centers 1157 Families of patients 1745 Family members One hundred and thirty three, 2-hour sessions Two clinicians discussed the content Lecture and questions and answers

Method Questionnaires: – Experience of Caregiving Inventory (ECI) – General Health Questionnaire (GHQ-28) 266 family members 206 family members filled the questionnaires

Demographics Family members: – 32.8% mothers – 42.9% family members of patients with first episode of psychosis Patients: – 172 patients (61% male, 39% female) – 77% of patients with three main diagnoses (schizophrenia, bipolar, schizoaffective)

Results 45.5% of family members had GHQ score of six or more (psychiatric morbidity) Distressed family members scored significantly higher on ECI total negative score (P<0.00) Significant difference between negative experiences of families of patients with first episode of psychosis compared to families of patients with a history of psychiatric hospitalization (P<002)

Results ECI Number of subscales / items Tehran (Mean /SD) England* (Mean /SD) Italy* (Mean /SD) Total negative scales 8 subscales 52 items Total positive scales 2 subscales 14 items * Tarricone I. et al. (2005) European Psychiatry

Randomized Clinical Trial of Family Education in Iran: Families of Patients with First-Episode Psychosis Y Mottaghipour, V Sharifi, Z Shahrivar, J Mahmoudi-Gharaei, J Alaghband-Rad, M Jalali Roudsari, N Salesian, A Seddigh

Objectives To evaluate two different models of family education in order to choose an effective, feasible and culturally accepted program Assessment of Carer’s experience and Psychological well- being

Method 50 families of first-episode psychosis patients Randomly assigned to two different groups Home based family education or multiple family groups at the hospital Both models of family education consisted of four sessions Two health professionals conducted the family education sessions

Method Outcome measures: – Experience of Caregiving Inventory (ECI) – General Health Questionnaire (GHQ-28) Both measures were administered before the family education program, after 6 months and one year

Results : (Demographic Data) 62 family members participated 30.6% mothers Age: – Mean 39.6 years old Education: – 19.7% illiterate – 57.4% 9 years and less

Results 34 Home based /28 Multiple family group Participation rate of family members 66.1% (3 sessions and more) Each family participation rate 77.1% (3 sessions and more)

GHQ and ECI Scores Before family education After 6 months After 12 months GHQ- 6 > ECI total negative scales 50.9% Mean= % Mean= *P = % Mean= GHQ ( home based vs. multiple family groups) ECI total negative scales (home based vs. multiple family groups) no difference *P = 0.03 Home based lower no difference no difference

Conclusion Psychological morbidity (GHQ) 12% to 74% Poor psychological well being with poor rating on ECI Home based treatment: regular contact with families 6 months lower rate, not stable Acceptability of family intervention program Limitations

Main Points Both models were acceptable Short–term family education part of a comprehensive treatment program Patients live with the families, this has an effect on families as well as the intervention program Low level of education an important factor Contrary to previous assumptions families accepted participation

Training Health Professionals to Conduct Family Education for Families of Patients with First-Episode Psychosis: Adherence to Protocol Y Mottaghipour, N Salesian, A Seddigh, M Jalali Roudsari, S Tahbaz Hosseinzade

Literature Implementation difficulties Lack of training Limited resources

Method/Training 3-day workshop Supervision: – 12 supervision sessions – 2-hour group supervision – Content : Audiotapes of family education analyzed Topics related Areas of concern

Method /Subjects Eight health professionals : – General practitioner (4) – Nurse (2) – Social worker (4)

Method/Analysis Transcripts of sessions Content analysis based on protocol Duration of each session Number of questions asked

Results 44 recorded sessions 24 analyzed 72% adherence to protocol Multiple family group sessions vs. home based: – 79% vs. 69% – Time: 60 min vs. 30 min – Q : 6 to 2

Conclusion Level of adherence satisfactory Difference between the two due to: – Cultural issues – Time limitation – Presence of the patient – More specific content at home

Main Points The missing parts: “introduction” and “conclusion” Patients present at home Quality of conducting the sessions did not change over time

Burden of Families of Patients with Severe mental Disorder in Iran: a One-Year Follow-Up Y Mottaghipour, V Sharifi, H Amini, A Hajebi

Demographics 118 family members 55.1% mothers and sisters 32.2% no literacy or minimum 49 (41.5%) hospital base/multiple family group 69 (58.5%) home based/home visit sessions 56.8% four sessions and more

Results: Baseline and 12 months GHQ significant decrease Total burden significant decrease Four subscales significant decrease

After Care Services Expert group program for after care services: – Treatment follow-up Home care/Telephone follow-up – Family psychoeducation – Patient social skills training

Other Research Professionals vs. family members case management Effect on EE Multi–center home visit Family psychoeducation (schizophrenia, bipolar disorder, borderline personality disorder) Patient education

Summary of Demographics Family members: – 30% to 40% mothers – More than 55% female – Literacy (30% no or minimum literacy, to about 50% nine years and less) – Living with family – 42.9% family members of patients with first episode of psychosis

Training One day workshop: – Thirteen workshops for residents (274 participants) Two-day workshop – Five workshops for after care and day center teams (68 participants) Three-day workshop – Two workshops for research teams (10 participants)

Supervision Questions Language of sessions Language of information sheets How much involvement? Recording of sessions Patient presence at home Acceptance of recovery for team members Family’s other problems

Resources Information sheets Manuals – Patient education (schizophrenia) – Patient education (bipolar disorder) – Family psychoeducation FAQ families Transcript of sessions

Sustainable Psychoeducation Program: Capacity Building Leadership Organizational structures Workforce development Strategic resource development Partnerships: Working with Non- Government Organizations

Summary of Major Points Language Literacy Female participants Setting Supervision Content of education Common language/shared language

Our Challenges with Families

FAQ Dependence on medication Substance abuse Nutrition/food and illness Blaming another person Family and friends How to handle patient’s demands Questions on medication Questions on diagnosis Questions on prognosis

Main Issues Marriage Recovery Stigma Society attitude re: medication Doctor shoppers Dependence/Independence