Rehabilitation Needs of People with Schizophrenia and their Caregivers

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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

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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

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Background

• No existing validated questionnaire
• Research addressing their needs limited (Tsang,
  Pearson Yuen, 2002 Yip, 2004)

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What have to be done?

• Identify needs from various perspectives
• Make suggestions to the Government for policy
  development

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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

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Overall Design

• Phase Three
• To explore and compare perceived and normative
  rehabilitation needs via a quantitative survey

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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

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Phase One Qualitative Study

• Three sample recruited (n43)
• People with Schizophrenia (n 14)
• Aged gt15 and with onset of illness at least 1
  year
• Caregivers of people with schizophrenia (n13)
• Acted as main carer and taking care of client at
  least 1 year
• Mental health professionals (n16)
• At least 1 year experience working for people
  with schizophrenia
• Six focus groups conducted

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Demographic Information of Participants
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Schizophrenia

• 76 items (19 categories) were generated

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Caregivers

• 50 items (11 categories) were generated

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Phase Two

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

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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 (PRNQC)
• Perceived Rehabilitation Needs Questionnaire for
  caregivers towards people with schizophrenia
  (PRNQCS)
• Normative Needs
• Normative Rehabilitation Needs Questionnaire for
  people with schizophrenia (NRNQS)
• Normative Rehabilitation Needs Questionnaire for
  caregivers of people with schizophrenia (NRNQC)

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Psychometrical Properties of PRNQS, PRNQCS, and
NRNQS
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Psychometrical Properties of PRNQS, PRNQCS, and
NRNQS
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Psychometrical Properties of PRNQC and NRNQC
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Psychometrical Properties of PRNQC and NRNQC
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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

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Demographic Data of Participants
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Demographic Data of Participants
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Rehabilitation Needs of People with schizophrenia
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Most needed Psychiatric Rehabilitation Services

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Rehabilitation Needs of Caregivers
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Most needed Psychiatric Rehabilitation Services
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Adequacy of Services toward People with
Schizophrenia(NRNQ-S)
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Adequacy of Services toward People with
Schizophrenia (NRNQ-S)
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Adequacy of Services towards Caregivers (NRNQ-C)
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Adequacy of Services towards Caregivers (NRNQ-C)
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Comparison of Perceived and Normative Needs for
People with Schizophrenia
Mean
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Comparison of Perceived and Normative Needs for
People with Schizophrenia
Mean
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Comparison of Importance of Rehabilitation
Services for People with Schizophrenia
Mean
P ? 0.05
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Comparison of Perceived and Normative
Rehabilitation Needs for Caregivers
Mean
P ? 0.05
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Comparison of Importance of Rehabilitation
Services for Caregivers
Mean
P ? 0.05
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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).

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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.

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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.

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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.

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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.

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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.

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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.

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Acknowledgement

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

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• Thank You!

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Glossary for the Services provided in Hong Kong
regarding Public Policy Research
(PPR) by (Principal Investigator Dr. Hector W.H.
Tsang, Department of RS, The Hong Kong
Polytechnic University)
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