Rehabilitation Needs of People with Schizophrenia and their Caregivers

1. Rehabilitation Needs of People with Schizophrenia and their Caregivers Principal Investigator Hector W.H. Tsang, PhD, OTR Department of Rehabilitation Sciences, The Hong Kong Polytechnic University 6 Nov 2009

2. Background • Hong Kong Government • White paper on Rehabilitation (Hong Kong Government, 1995) • Hong Kong Rehabilitation Program Plan 1998-99 to 2002-03: Towards a New Rehabilitation Era (Health and Welfare Bureau, 1999) • Did not address special needs of people with schizophrenia and their caregivers

3. Background No existing validated questionnaire Research addressing their needs limited (Tsang, Pearson & Yuen, 2002; Yip, 2004)

4. What have to be done? • Identify needs from various perspectives • Make suggestions to the Government for policy development

6. Overall Design Phase One • To identify issues via focus group interview Phase Two • To develop and validate questionnaires for measuring perceived and normative rehabilitation needs for people with schizophrenia and their caregivers

7. Overall Design Phase Three • To explore and compare perceived and normative rehabilitation needs via a quantitative survey

8. Types of Needs • Perceived needs • “what people think their need are or feel their needs to be”. • Normative needs • “the existence of some standards or criterion established by custom, authority, or general consensus against which the quantity or quality of a situation or conditions is measured”

9. Phase One: Qualitative Study • Three sample recruited (n=43) • People with Schizophrenia (n= 14) • Aged >15 and with onset of illness at least 1 year • Caregivers of people with schizophrenia (n=13) • Acted as main carer and taking care of client at least 1 year • Mental health professionals (n=16) • At least 1 year experience working for people with schizophrenia • Six focus groups conducted

10. Demographic Information of Participants

11. Schizophrenia • 76 items (19 categories) were generated

13. Caregivers • 50 items (11 categories) were generated

15. Phase Two • To develop and validate questionnaires for measuring perceived and normative rehabilitation needs for • people with schizophrenia • their caregivers

16. Development of Five Questionnaires Perceived Needs • Perceived Rehabilitation Needs Questionnaire for people with schizophrenia (PRNQ-S) • Perceived Rehabilitation Needs Questionnaire for caregivers of people with schizophrenia (PRNQ—C) • Perceived Rehabilitation Needs Questionnaire for caregivers towards people with schizophrenia (PRNQ—CS) Normative Needs • Normative Rehabilitation Needs Questionnaire for people with schizophrenia (NRNQ—S) • Normative Rehabilitation Needs Questionnaire for caregivers of people with schizophrenia (NRNQ—C)

17. Psychometrical Properties of PRNQ—S, PRNQ—CS, and NRNQ—S

18. Psychometrical Properties of PRNQ—S, PRNQ—CS, and NRNQ—S

19. Psychometrical Properties of PRNQ—C and NRNQ—C

20. Psychometrical Properties of PRNQ—C and NRNQ—C

21. Phase Three: Quantitative Survey • To identify perceived and normative rehabilitation needs for people with schizophrenia and their caregivers via a quantitative survey • To compare the needs and the supplies of the present mental health service delivery • To propose directions for future mental health policy and rehabilitation services development

22. Demographic Data of Participants

23. Demographic Data of Participants

24. Rehabilitation Needs of People with schizophrenia

25. Most needed Psychiatric Rehabilitation Services

26. Rehabilitation Needs of Caregivers

27. Most needed Psychiatric Rehabilitation Services

28. Adequacy of Services toward People with Schizophrenia(NRNQ-S)

29. Adequacy of Services toward People with Schizophrenia (NRNQ-S)

30. Adequacy of Services towards Caregivers (NRNQ-C)

31. Adequacy of Services towards Caregivers (NRNQ-C)

32. Comparison of Perceived and Normative Needs for People with Schizophrenia Mean

33. Comparison of Perceived and Normative Needs for People with Schizophrenia Mean

34. Comparison of Importance of Rehabilitation Services for People with Schizophrenia Mean *P ≦ 0.05

35. Comparison of Perceived and Normative Rehabilitation Needs for Caregivers Mean *P ≦ 0.05

36. Comparison of Importance of Rehabilitation Services for Caregivers Mean *P ≦ 0.05

37. Recommendations • Allocate more resources in terms of funding and manpower on the provision of rehabilitation services (e.g., family intervention, psychotherapy, etc). • Strengthen social, welfare, and financial support to people with schizophrenia and their caregivers (e.g. Comprehensive Social Security Assistance, advocacy groups, etc).

38. Recommendations • Empower people with schizophrenia and their caregivers and set up channels to solicit their opinions in developing mental health care policy and rehabilitation services given the fact that their opinions are significantly different from normative needs as expressed by mental health professionals in some aspects • Formulate policies and strategies to reduce social stigma on mental illness.

39. Recommendations • Enhance public education on mental illness by establishing community-based resource centres, setting up hotlines, etc. • Conduct similar needs assessment in a regular way to include other conditions (e.g., bipolar disorders, substance abuse, etc.) and different age groups.

40. Recommendations for People with Schizophrenia • Increase manpower for psychiatric rehabilitation particularly occupational therapists, psychologists, and social workers • Adopt second generation psychotropic drugs to reduce side effects and improve recovery.

41. Recommendations for People with Schizophrenia • Adopt an ‘Integrated Community-based Care Approach’ which allows utilization of available community resources and provides early intervention, crisis support, protected housing, sheltered employment and integrated supported employment. • Develop complementary and alternative approaches to the treatment of mental illness such as cognitive remediation training and mindfulness-based interventions.

42. Recommendation for Caregivers • Formulate specific policies on provision of psychiatric services for caregivers to reduce their burden, increase their quality of care, and improve their quality of life. • Allocate more resources and manpower on the provision of services for caregivers • Provide more support and practical advice for caregivers on psychiatric symptoms, use of medications, and management of disturbing behaviour and disabilities.

43. Recommendation for Caregivers • Provide adequate interventions and support to alleviate caregivers’ emotional crisis in taking care of their relatives with schizophrenia. • Publish caregiver booklet or launch formal care-support programmes, as guidelines or promotions for home-based care. • Set up more resource centres to allow easier access to caregiver supports and information services.

44. Acknowledgement • Public Policy Research Grant, RGC • Richmond Fellowship of Hong Kong • United Christian Hospital • Department of Rehabilitation Sciences, The Hong Kong Polytechnic University

45. Thank You!

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