1. TRINNODD Survey Portugal February, 2009 Maria João Gonçalves, Maura Faro, Sónia Fontes FENACERCI

2. Implementation The tool –Translated to Portuguese –Included a support document explaining target group, delivery strategy and with Qol topics concepts and examples –Pre-tested with one professional, family member and person with Dual Diagnosis (PDD) –Modifications were incorporated, mainly related to language and explanations

3. Implementation Delivery strategy –The questionnaires where sent by e-mail to the Associates –Support was requested for the fulfilment of the questionnaires regarding DD sample –Support workers were advised to request general data about the services to their coordinators

4. Implementation Collection of data –Among the 51 FENACERCI’s associate members –In the total we received 128 questionnaires. 56 professionals 31 families 41 persons DD

5. Implementation Sample –Seven associates participated in this survey CERCIAZ (Oliveira de Azeméis) CERCIZIMBRA (Sesimbra) CERCISA (Corroios) CECD (Mira Sintra) CERCITOP (Sintra) CERCIBEJA (Beja) CERCIESPINHO (Espinho) –Furthermore 5 associates are collecting questionnaires but those aren’t yet available for this report

6. Implementation Feedback –Difficulties in understanding some issues addressed in the questionnaire –Support workers don’t have knowledge on what are the theoretical grounds –Lack of existence of DD evidences/medical reports

7. Support Workers n=56

8. Questionnaire for support workers 1)Gender 2)Age MaleFemaleTotal 74956 13%88%100% RangeNº% 22-2647% 27-31713% 32-361221% 37-41814% 42-46916% 47-51611% 52-56713% 57-6024% > 6012% Total56100% Average: 40,39 years

9. Questionnaire for support workers 3) Training Nº% 4 years of schoolariship47% 9 years of schoolariship1323% 11 years of schoolariship24% 12 years of schoolariship59% High degree 2545% No answer 713% 56100%

10. Questionnaire for support workers 4) Current Occupation Nº% Psychologist611% Psychomotor Rehabilitation technician47% Monitor1120% Assistant2036% Social worker35% Director24% Psychopedagogue24% Occupational Therapist35% Physiotherapist12% Teacher12% Other24% No answer12% 56100%

11. Questionnaire for support workers 5) How long have you being doing this job? 6) Groups of clients Nº% 0-51629% 6-101629% 11-151323% 16-20814% 21-2524% 26-3000% 31-3512% Total56100% Nº% Intellectual Disability5395% Intellectual Disability and Psychiatric Disorders5496% Psychiatric Disorders59%

12. Questionnaire for support workers 8) Definition of work with DD Nº% It is a job like any other24% It is an occupation implying great responsabilities4580% It is a job of great value3257%

13. Questionnaire for support workers 9) Topics for daily work Physical and psychological being Autonomy issues Training in DD Behavior modeling Communication Daily life activities Enjoy the work Occupational activities Professional Development Social Skills Multidisciplinary work Psychological Support Quality of life

14. Questionnaire for support workers 10) Theoretical grounds Basic notions on DD Psycho logical proble ms Pres enta tion of sym pto ms Educ ation al pers pecti ve Multi disci plina rity Evid ence - base d prac tice Psycho dynami c Medi catio n Therape utic method s Life span approac h Quality of life Ecologi cal model Other (specify )______ ______ ______ ____ Yes29344852544683837415544 0 %52%61%86%93%96%82%14%68%66%73%98%79% 0% No106320330341030 %18%11%5%4%0%5%54%5%7%2%0%5%0% NA/NR171652271815 14190 %30%29%9%4% 13%32%27% 25%2%16%0%

15. Questionnaire for support workers 11) Professionals

16. Questionnaire for support workers 12) Qol topics adopted by team Clients Physical being Psych ologic al being Spir itual bein g Phy sical belo ngin g Fa mily con nect ions Soci al Incl usio n Practic al Beco ming Leis ure time Person al Growth and Develo pment Advoca cy/Self Repres entatio nRights Yes55 2050 43 55 4135 %98% 36%89% 77% 98% 73%63% No00350113 00 17 %0% 63%0%2%23% 0% 23%30% No Answer11165001124 %2% 11%9%0% 2% 4%7%

17. Questionnaire for support workers 12) Qol topics adopted by team Families Physical being Psych ologic al being Spiritual being Physical belongin g Family connectio ns Social Inclusi on Practical Becomin g Leisur e time Personal Growth and Develop ment Advoca cy/Self Repres entatio nRights Yes1752132540353620121633 %30%93%23%45%71%63%64%36%21%29%59% No360 216141529373014 %64%0%64%38%11%25%27%52%66%54%25% NA34710 7577 9 %5%7%13%18% 13%9%13% 18%16%

18. Questionnaire for support workers 13) Qol topics adopted by community Clients Physical being Psych ologic al being Spir itual bein g Phy sical belo ngin g Fa mily con nect ions Soci al Incl usio n Practic al Beco ming Leis ure time Person al Growth and Develo pment Advoca cy/Self Repres entatio nRights Yes3132233832 254825 30 %55%57%41%68%57% 45%86%45% 54% No611721120222 %11%2%30%4%2% 4%0%4% No Answer192316 23 298 24 %34%41%29% 41% 52%14%52% 43%

19. Questionnaire for support workers 13) Qol topics adopted by community Families Physical being Psych ologic al being Spir itual bein g Phy sical belo ngin g Fa mily con nect ions Soci al Incl usio n Practic al Beco ming Leis ure time Person al Growth and Develo pment Advoca cy/Self Repres entatio nRights Yes1312171982821316424 %23%21%30%34%14%50%38%55%11%7%43% No19151715 00816 1 %34%27%30%27% 0% 14%29% 2% No answer242922 33283517343631 %43%52%39% 59%50%63%30%61%64%55%

20. Questionnaire for support workers 14) How much trainning Basic notions on DD Psycholog ical problems Present ation of sympto ms Educ ation al pers pecti ve Multi disci plina rity Evid ence - base d prac tice Psycho dynami c Medi catio n Therape utic method s Life span approac h Quality of life Ecologi cal model not at all252126202231323425262132 %45%38%46%36%39%55%57%61%45%46%38%57% a little192819262016141216152310 %34%50%34%46%36%29%25%21%29%27%41%18% somewhat445475224846 %7% 9%7%13%9%4% 7%14%7%11% quite a lot021100003110 %0%4%2% 0% 5%2% 0% No answer815574888678 %14%2%9% 13%7%14% 11%13%14%

21. Questionnaire for support workers 15) Topics for training Basic notions on DD Sex education Quality of life Psychological Problems Differential Diagnosis Multidisciplinary work Stress management Behavior Modeling Life span approach Presentation of symptoms Therapeutic methods Psychology Guidelines for specific interventions

22. Questionnaire for support workers 16) Emotional support received 17) Training to manage work stress n% Not at all3563% A little1629% Somewhat12% Quite a lot00% NA/NR47% n% Not at all4275% A little1221% Somewhat00% Quite a lot00% NA/NR24%

23. Families n=31

24. Questionnaire for families 1)Gender 2)Age –Average age: 41.72 MaleFemaleTotal 121729 41%59%100%

25. Questionnaire for families 3) Qol topics adopted by team Physic al being Psycho logical being Spiritu al being Physic al belongi ng Family connec tions Social Inclusi on Practic al Becomi ng Leisure time Person al Growth and Develo pment Advoca cy/Self Repres entatio nRights Yes292814252813242819149 %94%90%45%81%90%42%77%90%61%45%29% No206011233669 %6%0%19%0%3%39%10% 19% 29% NA/NR0311626406 13 %0%10%35%19%6%19%13%0%19%35%42%

26. Questionnaire for families 3) Qol topics should been adopted by team Physic al being Psycho logical being Spiritu al being Physic al belongi ng Family connec tions Social Inclusi on Practic al Becomi ng Leisure time Person al Growth and Develo pment Advoca cy/Self Repres entatio nRights Yes21181916 201822241512 %68%58%61%52% 65%58%71%77%48%39% No10117 61086712 %32%35%23%35% 19%32%26%19%23%39% NA/NR02544531197 %0%6%16%13% 16%10%3% 29%23%

27. Questionnaires for PDD n=44

28. Questionnaire for PDD 1)Gender 2)Age –Average age: 30.53 MaleFemaleTotal 241741 59%41%100%

29. Questionnaire for PDD 3) Qol topics adopted by team Physic al being Psycho logical being Spiritu al being Physic al belongi ng Family connec tions Social Inclusi on Practic al Becomi ng Leisure time Person al Growth and Develo pment Advoca cy/Self Repres entatio nRights Yes2018 1718 191819165 %49%44% 41%44% 46%44%46%39%12% No11121102002 %2% 5%2% 0%5%0% 5% No answer2022 21222534 %49%54% 51%54%61%83%

30. Questionnaire for PDD 3) Qol topics should been adopted by team Physic al being Psycho logical being Spiritu al being Physic al belongi ng Family connec tions Social Inclusi on Practic al Becomi ng Leisure time Person al Growth and Develo pment Advoca cy/Self Repres entatio nRights Yes1076667 16984 %24%17%15% 17%24%39%22%20%10% No1113 1295 1113 %27%32% 29%22%12%29%27%32% No answer202122 20 2224 %49%51%54% 49% 54%59%