SELFCARE ACTIVITIES IN INDIA, PHILIPPINES

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SELF-CARE ACTIVITIES IN INDIA, PHILIPPINES SRI
LANKA

• Cured leprosy patients
• Mentally ill patients
• Epileptic patients
• Presenter Premkumar, India.

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DISABILITY SCENARIO IN 3 COUNTRIES

• PHILIPPINES
• GDP per capita US 4,321 (Human Dev. Report -
  2005).
• of disabled population 1.2 (2000 National
  Census).
• Definition of persons with disabilities Given.
• INDIA
• GDP per capita US 4,798 (World Bank - 2005).
• of disabled population 3.4 (Ministry of
  Social Security 2003)
• Definition of persons with disabilities N/A.
• SRI LANKA
• GDP per capita US 850 (Asian Dev. Bank -
  2005).
• of disabled population 4.1 (Census 2000).
• 
  gt10,000 soldiers disabled.
• Definition of persons with disabilities N/A.

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BIGGEST LEPROSY COLONY IN INDIA
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BIGGEST LEPROSY COLONY IN PHILIPPINES
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MENTAL ILLNESS (SCHIZOPHRENIC RESEARCH
FOUNDATION)
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EPILEPSY
(CADIP Project)
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EPILEPSY - Community Health / Neurology, National
Hospital, Sri Lanka
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APPLICATION FOR ETHICS REVIEW

• 1. Type of Review Required
• Regular
• Expedited
• 2. Title of the Project
• Multi-centre Research to develop a new
• paradigm of medical care for persons
• with disabilities.
• 3. Investigators
• Premkumar PhD
• Carukshi Arambepola MD (Com. Med)
• Padma Gunaratne DM (Neuro)
• 4. Proposed starting and ending dates
• Start date 1st January 2008
• End date 31st December 2008

• Specific importance and validity
• The information collected for this
• study will be used by the WHO along
• with the data collected from other
• countries for promoting suitable changes
• in the way of health care services
• provided to persons with disabilities.
• Give a brief summary of the research
• proposal (maximum 500 words)
• The information collected for this
• study will be used by the WHO along
• with the data collected from other
• countries for promoting suitable changes
• in the way of health care service provided
• to persons with disabilities.
• AIMS OF THE RESEARCH
• This is an action research, which

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PRESENT SCENARIO OF THESE DISABILITIES

• 1/3rd of all disabilities are due to mental
  disorders
• Since the prevalence of leprosy is declining
  most programmes are concentrating on self-care.
• More newer drugs in market for epilepsy. These
  are costly but not effective in terms of seizure
  control.

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METHODOLOGY Study Population

• EPILEPSY
• 1. Paediatric epilepsy
• 2. Adult epilepsy
• LEPROSY
• 1. Leprosy colony dwellers / beggars
• 2. Self-care volunteers who were leprosy affected
  
• MENTAL ILLNESS
• 1. Treated patients
• 2. Untreated patients

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LEPROSY STUDY GROUPS (In both settlements)

• INDIA
• Cured leprosy patients (25 persons)
• Leprosy Volunteers (9 persons)
• Medical Specialists (5 persons)
• PHILIPPINES
• Cured leprosy patients ( persons)
• Leprosy Volunteers ( persons)
• Medical Specialists ( persons)

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LEPROSY COLONIES Indian Colonies Prem
NagarPhilippines Colonies Tala Settlements
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METHODS OF DATA COLLECTION

• Organisation of leprosy pts into self-help groups
• Preliminary FGDs with 3 groups.
• Combined discussions.
• Sorting intervention activities.
• Organising and implementation.
• Immediate follow-up meeting with different groups
  

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MEDICAL ISSUES CAME UP DURING DISCUSSIONS
Leprosy Colonies

• In India _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
  _ _ _ _ In Philippines _ _ _
• Foot ulcer is a big problem Foot ulcer
• 
  (GK-3 10/24 GK-1 24/56)
• --------------------------------------------------
  -------------
• Body ache
  Reaction
• --------------------------------------------------
  -------------
• Avoids going to hospitals Complications
  of
• 
  kidney due to
• _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ severe reaction

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MEDCAL CARE NEEDS(Leprosy Colonies)

• INDIA
• Learn more on ulcer dressings.
• Care of insensitive limbs.
• PHILIPPINES
• Care of chronic conditions like hypertension,
  diabetes and arthritis.
• --------------------------------------------------
  -------------------------
• Suffering from leprosy for a long time does
  not automatically produce knowledge.

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SOURCE OF INFORMATION (LEPROSY

COLONIES)

• INDIA
• From a retired Compounder .
• Nearby leprosy hospital.
• PHILIPPINES
• Older patients (Dressers) gave information.
• From leprosy hospital.

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INTERVENTION ACTIVITIES (Leprosy

Colonies)

• 1. Participation of the community leaders in
  the monthly meetings.
• Beneficiary running their own groups.
  Facilitators leprosy affected volunteers.
• Participation of the family members to plan
  self-care activities at their homes.
• 4. Sustainability and empowerment through
  training.

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DIFFICULTIES FACED (Leprosy Colonies)

• India
• 1. Motivate leprosy beggars and their families to
  join self-care practice at home was much harder.
• 2. Changing their life-habit of self-care which
  meant changing their mindset after so many years.
• Philippines
• Total dependence on leprosy hospital / Govt. /
  NGOs / Religious order

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IMMEDIATE FOLLOW-UP RESULTS(Leprosy colonies)

• INDIA
• Cured Leprosy Patients Medical specialist
• Self-care is useful.
• Cured Leprosy Patients
• To continue for some more time because we are
  seeing results now.
• Medical specialist
• To continue for some more time for sustainability
• Intensify the programme. Reason - they were not
  practicing self-care for many years.

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The ultimate problem to be addressed in Indian
colony is

• BEGGING!!!

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The ultimate problem to be addressed in
Philippines colony is

• TOTAL DEPENDENCE ON GOVT / NGOs

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MENTAL ILLNESSSCHIZOPHRENIC RESEARCH FOUNDATION,
CHENNAI
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METHODOLOGYMENTAL ILLNESS

• Study Groups
• Untreated Patients (12 persons)
• Treated Patients (5 persons)
• Mental Health Specialists (7
  persons)

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METHODS OF DATA COLLECTION

• Initial discussion with 3 groups
• Meetings between groups and presentation.
• Presentation of alternative approaches.
• Organisation of intervention activities.
• Filling life-history forms.
• Analysis.

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MEDICAL ISSUES CAME UP DURING DISCUSSIONS
Mental illness

• Majority of mentally ill patients have
• No access to treatment
• High rate of drop outs
• Live with their families

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Medical Care NeedsUNTREATED MENTALLY ILL
PATIENTS

• Did Not work and depended on families.
• At some point of time family tried allopathic
  treatment.
• A number of patients did not worry about
  self-care.
• Few were independent for self-care and
  participated in domestic activities.

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Medical Care Needs TREATED MENTALLY ILL PATIENTS

• - Drowsiness due to medication.
• Restlessness / Anxiety / Fear.
• - Sleep disturbance.

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MENTAL HEALTH PERSONNEL ON SELF-CARE

• Self-care is not in the priority list of mental
  health specialists.
• Lack of self-care is a symptom of this illness.
• Therefore, effective treatment will improve the
  self-care.

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SOURCE OF INFORMATION (MENTAL

ILLNESS)

• No Source of information.
• Community Psychiatric Workers (Untreated
  patients)
• Drs / Hospital staff (Under
  treatment patients)

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INTERVENTION ACTIVITIES (MENTAL

ILLNESS)

• Self-care activities including sleeping.
• Motivational activities.
• Household activities.
• Counseling of family members.
• Work related intervention activities.
• --------------------------------------------------
  ---------
• INTERVENTION METHODS
• Rehab. Specialists as facilitators involving
• family in the therapy.

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FREQUENCY OF VISITS (Mental

illness)

• 1st Month - 3 times a week
• 2nd Month - 2 -Do-
• 3rd Month - 1 -Do-
• gt3 Month - Frequent phone calls

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ResultsCase history No. 3. Natarajan. Diag
Schizophrenia.
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IMMEDIATE FOLLOW-UP RESULTS

• Mentally Ill Patients / Care Givers
• Improved self-care (Regular in shaving hair
  cut)
• Moves around.
• Works / Looks for job.

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CONCLUSIONS(From the perspectives of Mental
Health Specialists)

• --------------------------------------------------
  ---------
• This mode of intervention is helpful to persons
  with serious mental illness in terms of improving
  self-care, vocational skills and behavioural
  changes.
• --------------------------------------------------
  ---------

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EPILEPSY COMMUNITY AWARENESS ON DISABILITY
PREVENTION PROJECT (CADIP) GOVERNMENT OF TAMIL
NADU ACTIVITIES
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Epilepsy METHODOLOGY

• Study Groups
• Initial discussions
• Paediatric epilepsy (6 persons)
• Adult epilepsy (7 persons)
• Medical Specialists (3 persons)
• Combined discussions
• Epileptic patients / Care givers (3)
• Medical specialists (4 persons)

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EpilepsyMETHODOLOGY

• Initial discussions with 3 groups.
• Meetings between groups presentation
• Identifications of needs in self-care.
• Organising activities.
• Follow-up discussions.
• Analysis of the findings.

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HEALTH PROBLEMS (EPILEPSY)

• Paediatric Group
• Seizures
• Fever, cough, cold
• Often co-morbidity with CP and MR
• Adult Group
• Seizures and the aftermath of it
• - Pain in limbs
• Interestingly no other medical problems.

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MEDICAL SPECILAISTS (EPILEPSY)

• In epilepsy a lot of ignorance and superstitions.
• Create indepth understanding like
  TB/HD/HIV.
• Poor drug compliance.
• Epilepsy not considered as disability, therefore
  no Govt. disability benefits.
• No printed information on epilepsy and its
  self-care.
• No proper local terminology - Essuppu
  Vettu
• No proper protocol to doctors on how to confirm
  disability

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GOVT. DOCTORS ARGUMENT (EPILEPSY)

• It is a disorder and in 50 cases drugs can be
  withdrawn lifelong.
• Misuse of the benefits
• Nevertheless the following conditions may come
  under disability
• Epileptic psychosis
• Chronic epilepsy
• Drug resistant epilepsy

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SOURCE OF INFORMATION (EPILEPSY)

• Paediatric group
• Do not know where to get it but keen to know the
  source of proper treatment.
• DUE TO LACK OF INFORMATION
• Spends a lot money on treatment.
• Believes in injections and tonics.
• Anganwadi workers do not want disabled children
  in their list.
• Adults
• No source of information/ In the group also no
  one knows.

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MEDICAL CARE NEEDS (EPILEPSY)

• Paediatric Group Adult Group
• Seizures to stop Financial needs
• Locomotion Seizures to stop
• Speech No / less knowledge
  about fits
• No / less knowledge Medical specialists do
  not
• give
  knowledge.
• Dont even
  tell how each
• drug
  functions.

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MIDWAY CONCLUSIONS (Epilepsy)

• Drug compliance and opting for inexpensive and
  effective medicines is the most crucial aspect in
  self-care.
• Proper safety precautions for self-care.

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INTERVENTION ACTIVITIES PLANNED
(Epilepsy)

• Develop a guidebook in Tamil language,
• which explains
• Epileptic drugs and its action.
• Precautions to be taken by epileptics.
• Address wrong/harmful practices.

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THANK YOU!