Fostering DisabilityFriendly HIVAIDS Programs in Manipur

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Fostering Disability-Friendly HIV/AIDS
Programs in Manipur Nagaland

• Martha Morrow and Heather Dawson
• HIV Interventions and Research in North-East
  India
• Recent results from the field
• Melbourne 5 July 2007

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Background

• Globally, little data on HIV awareness and risk
  practices among people with disabilities (PWD)
• PWD are often socially economically vulnerable
  factors linked to HIV
• Access to health information services are basic
  human rights
• Not always in place for PWD

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Background (contd)

• 2001 Indian Census est. 2.2 of population
  disabled
• Disability organisations est. at least 5-6
• Underestimate attributed to stigma
• NACO does not target PWD
• NACP III (2007 2011) opportunity to expand
  focus

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Background (contd)

• Nagaland Manipur high HIV-prevalence
• IDU route but increasingly sexual
• Cultural taboos inhibit discussion
• Inadequate data on disability
• Anecdotally, HIV programs not reaching PWD
• A gap in understanding the HIV-related needs of
  PWD in northeast India

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Project Aim Objectives

• Aim
• Develop Guidelines to make HIV/AIDS programs more
  disability-friendly
• Objectives
• Identify perceptions of PWD HIV risk
• Identify PWD needs, preferences practical
  mechanisms to respond
• Use findings and interactive workshops to develop
  Guidelines

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Research Team

• MC Arunkumar, Rajeev Irengbam, Pebam
  Krishnakumari Gurumayum Pritam Devi
• Manipur University
• Jamedi Longkumer, Ella Mary Kaje, Wetshokhrolo
  Lasuh Toshi Rongsenyangla Aier
• Independent researchers in Nagaland
• Rebecca Sinate
• Emmanuel Hospital Association
• M Morrow, H Dawson and E Pearce
• Australian International Health Institute

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Phases of Project

• Data gathering and analysis
• Workshops to draft Guidelines
• Workshops to refine Guidelines

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Primary Data Gathering June-Sept 2006

• Team recruitment and training
• Preliminary Consultative Workshops to expand and
  refine research topics
• with PWD disability organisations

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• Research Team Dimapur Consultative Workshop

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Imphal Consultative Workshop
Photo Heather Dawson
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Primary Data Gathering June-Sept 2006 (contd)

• Sampling ORCHID and team networks, purposive,
  snowballing
• PWD 4 FGDs 6 In-depth Interviews per state
• Blind physically disabled
• Equal number males and females (FGDs single sex)
• Aged 18-35
• Urban

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Primary Data Gathering June-Sept 2006 (contd)

• Disability sector 3 In-depth Interviews per
  state
• HIV/AIDS organisations
• FGD (1 per state)
• 52 structured surveys (16 organisations / state)

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Analysis Oct 2006-Dec 2007

• Thematic and descriptive analysis of transcripts
  and surveys
• Evidence from review of international research
  and models
• Findings used to prepare framework for Guidelines
  workshops

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Phases of Project (contd)

• Guidelines Workshops in Imphal and Dimapur with
  PWD and representatives of disability HIV
  sectors
• December 2006
• Overview of findings
• Preliminary draft of Guidelines
• March 2007
• Discuss and finalise Guidelines

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Some of our Challenges

• Incomplete understanding about HIV transmission,
  esp in Nagaland team
• Inadequate time to consolidate skills of
  inexperienced researchers
• Tyranny of distance
• Bureaucracies running wild

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A few of our Challenges (contd)

• Oh yes, masked gunmen in hotel corridor

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• Major Findings from Research Phase

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HIV awareness, vulnerability perceptions
of risk among PWD

• Difficult to determine number, type of
  disability, location
• Many housebound
• Records incomplete
• Generic PWD does not exist
• Sex, education, location, type of disability
  when acquired, marital status crucial for
  vulnerability and needs

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HIV awareness, vulnerability perceptions of
risk (contd)

• Stigma and social exclusion widespread
• Superstitions in Manipur
• Sometimes I feel ashamed. I am not like
  othersso I dont go out. (Nagaland, phys
  disabled female)
• Many lack confidence to attend community HIV
  activities

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HIV awareness, vulnerability perceptions of
risk (contd)

• Gender ethnicity disability vulnerability
• Reduced life chances
• Now she has been gradually losing her eyesight
  just like me. So, her mother hides her.
  Thinking that the girl could never get married
  because of her disease, her mother did not allow
  her to have a proper education. (Manipur, blind
  females FGD)
• Women PWD report sexual exploitation and fear
• Unmarried blind females should be more
  cautious..We may either be trapped or kidnapped
  by other people because we do not see anything.
  (Manipur, blind female)

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HIV awareness, vulnerability perceptions of
risk (contd)

• PWD knowledge good to poor
• Manipuri traditional concepts
• But if their blood groups are not compatible,
  the other will not get infected. (Manipur, blind
  female)
• We should go to the church and the healing power
  can cure HIV. (Nagaland, blind females FGD)
• Transmission? Via mosquitoes sex with an
  unknown person (Manipur, blind male)
• Clear messages for PWD to recognise personal risk
  understand prevention may not reach them

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HIV awareness, vulnerability perceptions of
risk (contd)

• Most PWD, disability and HIV/AIDS service
  providers felt that PWD can be at risk
• Could be relatively greater (eg, mobile men,
  hearing- and intellectually-impaired women)
• Could be relatively lower (housebound)
• Several PWD admitted risk-taking
• Some disability programmers had poor knowledge

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PWD Needs Expressed Preferences

• Information preferences
• Should visit door-to-door to identify PWD and
  build trust
• Educated blind want Braille materials
• Most want peer-to-peer education IF peers are
  well-informed
• I think that would be very good because he
  himself would be very happy when he is given such
  a role.  To the disabled community he would
  become a role model. (Manipur, phys disabled male)

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PWD Needs Expressed Preferences (contd)

• Service preferences
• On ground floor, chairs for waiting
• Many want separate services
• Esp. women
• Helpers to make access more confidential
• Delivered as outreach to overcome mobility
  limitations

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Practical Challenges for Programming

• Many PWD can only be reached via a gatekeeper
  (parents, family, carers, guardians, hostel
  directors)
• Can permit or refuse access
• may be offended or disbelieving
• Must gain gatekeepers trust to gain access to
  PWD
• New models needed to reach PWD indirectly
• Past humiliation makes some PWD reluctant to go
  out in public

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Practical Challenges for Programming (contd)

• HIV organisational constraints
• Lack of specialist educators, interpreters
• Cost of specialised services
• Risk may increase stigma, eg, community may
  assume all PWD have HIV
• Disability networks and advocacy are
  under-developed
• Cultural religious taboos inhibit discussion

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Limitations of Phase I

• Little data gathered on intellectually disabled
  or hearing-impaired
• No investigation of needs among people with
  mental illness
• Small sample, mainly urban, non-random
• Blind sample biased towards more educated

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Transportation to Nagaland Consultative Workshop
Photo Alo Lasuh
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• Guidelines
• for Disability-Friendly HIV Programs

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GUIDELINES Programming Principles

• Use existing community structures services
• Develop networks between HIV disability sectors
• Focus on practical and affordable
• Involve PWD in development and implementation of
  programs

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GUIDELINES Different Approaches to be
Disability-Friendly

• Type I. Little or no program modification, eg
  Invite PWD carers to community programs
  provide chairs at clinics
• Type II. Minor adaptations, eg
• Produce material in a variety of formats
  one-point messages, audio, visual
• Type III. Specialist programs, eg
• HIV education sessions for hearing-impaired

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GUIDELINES Modifying HIV Programs

• Ask PWD and disability service providers to
  sensitise HIV programmers
• Develop strategies to gain trust and cooperation
  of gatekeepers in order to reach PWD
• Advocate for rights of all including PWD to
  health information / services, and freedom from
  sexual exploitation

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GUIDELINES Modifying HIV Programs (contd)

• Ensure meetings and services are offered in
  places, ways, times to meet needs of different
  types of PWD
• Provide helpers to enable PWD to gain access and
  retain privacy/confidentiality

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GUIDELINES Modifying Disability Programs

• Invite HIV programmers to raise awareness in
  communities and disability organisations about
  HIV risk and prevention for PWD
• Build capacity of disability service providers to
  provide HIV programs to PWD

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GUIDELINES Modifying Disability Programs
(contd)

• Provide practical support for PWD, eg
• Drop-in centres (in disability facilities) to
  access HIV information
• Assistance to reach and use HIV services
• Liaise with community and religious leaders about
  PWD vulnerability, needs and rights
• Use PWD as peer educators

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• Invite PWD and disability service providers to
  sensitise HIV programmer to the needs of PWD