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“Even the fowl has feelings”: access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia

SCHENK, Katie D
TUN, Walter
SHEEHY, Meredith
OKAL, Jerry
KUFFOUR, Emmanuel
MOONO, Grimond
MUTALE, Felix
KYEREMAA, Rita
NGIREABAKUNZI, Edson
AMANYEIWE, Ugochukwu
LECLERC-MADLALA, Suzanne
October 2018

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Background: Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities.

 

Methods: We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors.

 

Results: Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and – by denying their circumstances – leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities.

 

Discussion: We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response.

 

Conclusions: HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability.

The need for a rehabilitation model to address the disparities of public healthcare for people living with HIV in South Africa

CHETTY, Verusia
HANASS-HANCOCK, Jill
June 2015

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This article advocates for the development and implementation of a model of care to guide rehabilitation of people living with HIV in South Africa. The paper begins by presenting the emerging evidence of rehabilitation in the context of HIV, and goes on to identify appropriate steps to develop a model of care based on this that would be applicable to South Africa

African Journal of Disability 4(1), Art. #137

A home-based rehabilitation intervention for people living with HIV and disability in a resource-poor community, KwaZulu-Natal : study protocol for a randomized controlled trial

COBBING, Saul
HANASS-HANCOCK, Jill
MYEZWA, Hellen
2015

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In this paper, the researchers develop a needs-based home-based rehabilitation programme for people living with HIV in order to improve their quality of life and functional ability. The study aims to  provide rehabilitation professionals and researchers with evidence that can be utilised to improve existing rehabilitation interventions for people living with HIV.

The paper outlines a randomised control trial to test the programme, to be conducted at a public hospital in KwaZulu-Natal, South Africa. The trial will assess the participants’ quality of life, perceived level of disability, functional ability and endurance

Trials 16:491

Barriers to sustainable access of children and families to ART centres in rural India : a report on operations research conducted in Maharashtra and Manipur

INDIA HIV/AIDS ALLIANCE
December 2009

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This report identifies barriers that children and families face in accessing anti-retroviral therapy (ART) centres in rural India. The report also seeks to find solutions to these barriers based on an operations research conducted in Maharashtra Pradesh and Manipur. Operations research objectives: * To build an understanding among policy makers of the barriers faced by children and caregivers accessing ART services in rural communities. * To assess and highlight a basic minimum level of standards for ART centres in terms of adequacy, quality and timeliness of support needed. * To explore opportunities for linkages with state and district level departments and/or local self-governing institutions

A handbook for network support agents and other community workers supporting HIV prevention, care, support and treatment

March 2009

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This manual is intended to help network support agents and other community workers be more effective in disseminating standardised information about HIV and AIDS. It "...emphasises the importance of the acquisition of knowledge, skills and the right attitude needed to identify the psychosocial needs of people of people infected and affected by HIV/AIDS and address these needs by giving information, counselling and appropriate referrals. Knowledge of counselling and psychosocial care, is combined as much as possible with prevention activities such as adopting HIV basic care positive prevention and adherence to treatment"

Integrating gender into HIV/AIDS programmes in the health sector : tool to improve responsiveness to women’s needs

AMIN, Avni
et al
2009

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The purpose of this operational tool is to: raise awareness of how gender inequalities affect women’s access to and experience of HIV and AIDS programmes and services; and offer practical actions on how to address or integrate gender into specific types of HIV and AIDS programmes and services. The vulnerability of women, their risk of HIV infection and the impact of the epidemic on them are heightened by many factors, including: the low status accorded to women in many societies, their lack of rights, their lack of access to and control over economic resources, the violence perpetrated against them, the norms related to women’s sexuality, and women’s lack of access to information about HIV. This tool is primary aimed at primarily programme managers and health-care providers involved in setting up, implementing or evaluating HIV and AIDS programmes

Partnerships in practice

UNITED NATIONS EDUCATIONAL, SCIENTIFIC AND CULTURAL ORGANIZATION
December 2008

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This booklet aims to contribute to improved understanding of partnerships, including what they can achieve as well as challenges to effective partnerships. It focuses on partnerships in HIV & AIDS and education and draws on a range of global, regional and national experience to: * Provide a brief overview of the role of partnerships and why they are important. * Discuss the different types of partnerships that have been established. * Highlight ways that partnerships can contribute to UNESCO's Education For All programme and universal access to prevention programmes, treatment, care and support. * Summarise lessons learned about partnerships

School-centred HIV and AIDS care and support in Southern Africa : technical consulation report

BOLER, Tania
JOHNSSON, Emily
February 2008

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This report maps out the various activities in school-based HIV treatment, care and support that are being undertaken in Southern Africa, as a response to the changing needs of teachers, students and local communities. It highlights successful factors and common challenges and suggests five broad principles that help provide a comprehensive response to treatment, care and support,and reinforce prevention messages

HIV/AIDS in Haiti : key findings of the mortality, morbidity, and utilization of services survey : EMMUS-iv 2005-2006

MEASURE DHS (Demographic Health Surveys)
2008

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This report presents survey findings on HIV prevalence in Haiti and other related results, including knowledge of HIV and AIDS, attitudes toward people living with HIV, and sexual behaviour. The survey was undertaken by the Mortality, Morbidity, and Utilization of Services Assessment Survey (EMMUS-IV) [Enquête Mortalité, Morbidité et Utilisation des Services] conducted between October 2005 and June 2006. The French version of this report follows the English version

Towards universal access : scaling up priority HIV/AIDS interventions in the health sector : progress report 2008

WORLD HEALTH ORGNAIZATION (WHO)
JOINT UNITED NATIONS PROGRAMME ON HIV/AIDS (UNAIDS)
UNITED NATIONS CHILDREN'S FUND (UNICEF)
2008

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This report provides in-depth information on: treatment and care for people living with HIV; HIV testing and counselling; health sector interventions for HIV prevention; scaling up HIV services for women and children; strengthening health systems and health information; and towards universal access as the way forward

Positive prevention : HIV prevention with people living with HIV. A guide for NGOs and service providers

INTERNATIONAL HIV/AIDS ALLIANCE
September 2007

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This guide is intended as a resource to help nongovernmental organisation (NGO) staff and HIV service providers working across the spectrum of HIV prevention, treatment, care and support services to take steps towards integrating HIV prevention for, by and with people living with HIV. It is hoped it will also be of use both to individual people living with HIV and to their partners. The guide does not intend to discuss or review all HIV prevention strategies. Rather, it is a starting point from which to consider different strategies to assist NGO staff and HIV service provider organisations to support HIV positive people to live well with HIV and have safer sexual relationships within a full and healthy life. This guide focuses largely on the sexual transmission of HIV

Minimum standards for civil society participation in the universal access initiative

THE COALITION OF ASIA PACIFIC REGIONAL NETWORKS ON HIV/AIDS (SEVEN SISTERS)
August 2007

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This document, developed with input from civil society participants and organisations from the Asia-Pacific region, proposes a process and framework to encourage minimum standards for civil society participation in universal access processes. It is for use by both civil society representatives as a tool to assess and promote their greater involvement in national universal access processes, and by national government representatives as a guide for ensuring civil society participation in national scaling up to reach universal access targets. The main body of the document is divided into three parts: a description of the preparation needed to implement a set of minimum standards for participation; a proposed matrix that uses a scoring system based on definitions of levels of participation and sets of indicators which are used to examine the different aspects and stages of universal access; and monitoring and evaluation methods for assessing civil society participation. It also considers how the proposal can be developed and disseminated

Missing the target #4 : time is running out to end AIDS - treatment and prevention for all!

INTERNATIONAL TREATMENT PREPAREDNESS COALITION (ITPC)
July 2007

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This report provides research from 17 countries to support the case that efforts to ensure universal access to treatment for HIV and AIDS are maintained and accelerated; that supplementary services are also provided free at the point of access; that there is increased investment in health care workers; and co-ordinated policy reforms. It also recommends that donors ensure sustainable funding for treatment programmes and identifies areas of weaknesses in global programmes. In addition, it provides focus reports for Cambodia, China, Malawi, Uganda, Zimbabwe and Zambia; brief updates on countries previously reported on: Dominican Republic, Kenya, Nigeria, India, Russia and South Africa; and short summaries on Argentina, Belize, Cameroon, Malaysia and Morocco

Helping a forgotten minority : disability and HIV/AIDS in Zambia

DEPARTMENT FOR INTERNATIONAL DEVELOPMENT (DFID)
June 2007

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This article and case study demonstrate work being done in Zambia to ensure that the needs of people with disabilities are met by HIV and AIDS services, so that they have full access to the treatment, care and support available. Provisions include sign language training for HIV and AIDS counsellors, making mobility aids and hearing aids available to those who need them, as well as improving food security and encouraging a sustainable livelihoods approach. This would be of interest to anyone looking at mainstreaming disability in the provision of HIV and AIDS services

Understanding and challenging HIV stigma : toolkit for action. Modules F & G : coping with stigma; treatment and stigma

KIDD, Ross
CLAY, Sue
CHIIYA, Chipo
June 2007

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This is the fourth booklet in this revised toolkit to raise awareness and promote practical action to challenge HIV stigma and discrimination. Module F focuses on coping with stigma and module G on treatment and stigma. The toolkit was written by and for HIV trainers in Africa and changes and additions were made with the help of a regional trainers network workshop in Zambia in August 2005

The essentials of antiretroviral therapy for health care and program managers

HOPE, Ruth
ISRAEL, Ellen
April 2007

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This book provides health care workers and mangers with information and practical guidance relating to antiretroviral therapies (ART). It also considers wider care and treatment issues such as; opportunistic infections, the integration of ART with antenatal and midwifery services, the particular needs of children and young people, support relating to nutrition, spiritual needs, psycho-social and economic issues. In addition, the need for community level support to help with adherence to treatment and address stigma and discrimination are also considered, as is end-of-life care for people whose disease does not respond to treatment

UNAIDS practical guidelines for intensifying HIV prevention : towards universal access

JOINT UNITED NATIONS PROGRAMME ON HIV/AIDS (UNAIDS)
2007

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These practical guidelines are designed to help policy makers and planners to create an effective national response to HIV prevention, by ensuring that their response matches the epidemic dynamics and social context within their country and the populations who remain most vulnerable to and at risk of HIV infection. The guidelines encourage countries to know the national and local epidemiological scenarios and their current response; to match and prioritise their response; to set ambitious, realistic and measurable prevention targets; to tailor prevention plans to local epidemic scenarios and to use and analyse strategic information

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