Resources search

“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

Expand view

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.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

Expand view

Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

Capacity building in network organisations : experiences from and practical guidelines for HIV and other networks

SLUIJS-DOYLE, José
November 2009

Expand view

This report assesses seven capacities of organisations of people living with HIV and other HIV network organisations to see what makes a well-functioning network. These capacities are: involvement and accountability; partnership alliances; leadership; knowledge and skills; internal communication; impact, outputs and external communication; and management and finance. The report looks at four network organisations in Eastern and Southern Africa, with secondary research drawn from networks in Bangladesh, Nepal and India. The findings and recommendations cannot be applied universally to capacity strengthening in all network organisations, but need to be adapted to the context of each particular group

Training manual of IICCHAA project

INDIAN INITIATIVE OF CHILD CENTRED HIV & AIDS APPROACH (IICCHAA)
February 2008

Expand view

This manual offers an approach to memory work that has been adapted to fit the local context in India and is based on memory work pioneered by the National Community of Women living with HIV/AIDS (NACWOLA) in Uganda. It provides trainers with guidance to support parents, guardians and care givers affected by HIV and AIDS by helping them to share information, hopes and fears with their children; strengthen each child's sense of identity and belonging; and plan for the future care of their children

Joining hands: integrating gender and HIV/AIDS: report of an ACORD project using Stepping Stones in Angola, Tanzania and Uganda

HADJIPATERAS, Angela
et al
July 2007

Expand view

This is the report of a two-year project to reduce the vulnerability of women and girls in Africa to HIV and AIDS, using Stepping Stones - a gender-focused participatory process that involves working closely with peer groups. The project's other objectives were to: build the capacity of local structures to respond; promote community responses through effective partnerships and advocacy actions; and find out whether Stepping Stones could be used effectively in unconventional settings with a range of population groups such as the nomadic Mucubai tribe in Southern Angola, internally displaced people living in camps in Northern Uganda, and the 21st Battalion of the Angolan armed forces. Key findings include: improvements in the level of knowledge and understanding of HIV/AIDS and increased communication around sexual issues and between couples and within communities, across all three countries, as well as an increased sense of community responsibility for HIV and AIDS. In addition there was patchy evidence of stigma reduction and some reduction in risky cultural and sexual practices. Although increased respect for women, including self respect and a reduction in gender violence was also noted, female subordination in decision making and control over resources remains. Stepping Stones was on the whole considered to be adaptable for use in a wide range of contexts although more thought was needed to develop effective strategies to combat obstacles when using this process in some circumstances

Evaluating Stepping Stones : a review of existing evaluations and ideas for future M&E work

WALLACE, Tina
June 2006

Expand view

This publication aims to review monitoring and evaluation activities, methodologies and findings around the Stepping Stones (SS) approach. Over the last ten years, Stepping Stones has been used by many NGOs as an effective tool for HIV prevention, gender empowerment, community mobilisation and promotion of PLWHA rights. However, monitoring and evaluation documentation on SS is sparse and does not reflect the wealth of learning about the methodology. Key findings show that SS helps improve communication about health issues and supports behaviour changes, although evidence that it has led to a decline in HIV or AIDS incidence is less clear. The report calls for well-designed and systematic monitoring and evaluation activities, and for a strategic dissemination of findings and monitoring and evaluation data

UNESCO guidelines on language and content in HIV- and AIDS-related materials

UNITED NATIONS EDUCATIONAL, SCIENTIFIC AND CULTURAL ORGANIZATION (UNESCO)
January 2006

Expand view

This document contains guidelines on the use of language and content in HIV- and AIDS-related documents and contexts. As stigma and discrimination are often attached to the disease, the use of culturally-sensitive and appropriate terminology and ethical considerations in the production of materials are vital. Contains seven tables addressing commonly used terminology; stigmatising terms and expressions; culturally sensitive language; precision and differentiation of certain terms; cultural issues and practices; audio and visual content. Table 5 presents some specific examples. Each problematic term or approach is briefly discussed and provided with an alternative/preferred substitute. These guidelines are an essential tool for anyone working in the field of HIV and AIDS

Getting the message across : the mass media and the response to AIDS

JOINT UNITED NATIONS PROGRAMME ON HIV/AIDS (UNAIDS)
December 2005

Expand view

The mass media have the potential to provide a platform for discussion, communication and education on HIV and AIDS, giving a voice to people living with HIV and AIDS (PLWHA), challenging stigma and discrimination, lobbying policy makers and building partnerships and capacity through sharing and transferring skills and expertise. However, mass media can also disseminate misleading messages, while HIV/AIDS communication competes with other topics for broadcasting time and audiences. This report presents three case studies of effective and creative use of the media in South Africa: Soul City and Soul Buddyz adopt an 'edutainment' approach, aiming both to educate and entertain; the Community Health Media Trust produces a series of programmes addressing issues concerning people with HIV/AIDS; Takalani makes television and radio programmes, to encourage small children to develop self-esteem, offer positive models and destigmatise PLWHA. Detailing the lessons learned from these experiences, the report looks at how target audiences are chosen, how partnerships are formed, how topics and ideas are developed and what ethical issues arise

Building bridges with SIPAA : lessons from an African response to HIV and AIDS

DUNN, Alison
HEALTHLINK WORLDWIDE
2005

Expand view

This document examines the key lessons from the Support to the International Partnership against AIDS in Africa (SIPAA) programme implemented between 2001 and 2005 in nine African countries. The programme's main focus was on African leadership and ownership, involvement and participation of people living with or affected by HIV and AIDS and mobilisation of national and regional partners. Lessons learned include: meaningful involvement of people living with HIV and AIDS; supporting associations according to potential rather than proven track record; networks support; support for local leaders; making connections through National AIDS Councils; building strong partnerships; sharing information and knowledge across Africa; making the most of African skills and resources

Mapping workshop manual : finding your way through life, society and HIV

ALEMELEH, Colin
et al
March 2004

Expand view

This manual was developed through the Memory Box Project, and some of the mapping exercises presented here draw on the tradition of 'memory work'. However, it reflects a shift in emphasis from bereavement and succession planning to positive living in the context of greater availability of antiretroviral therapy, and with people living with HIV/AIDS now having the opportunity to live longer, more productive lives. The mapping exercises described in this manual are designed to encourage empowerment and understanding of available opportunities, identify key components of an enabling environment and promote positive living. Tools presented include journey mapping, body mapping and memory box

UNESCO's strategy for HIV/AIDS prevention education

UNITED NATIONS EDUCATIONAL, SCIENTIFIC AND CULTURAL ORGANIZATION (UNESCO). International Institute for Educational Planning (IIEP)
2004

Expand view

Describes the guiding principles and core tasks which will be the focus of UNESCO's HIV/AIDS prevention education work for 2004-2008 (to be revised as appropriate). Sets out the context for these efforts in terms of the nature and extent of the pandemic, and the role of education in combatting ignorance and stigma

Working positively : a guide for NGOs managing HIV/AIDS in the workplace

UK CONSORTIUM ON AIDS AND INTERNATIONAL DEVELOPMENT
December 2003

Expand view

With HIV prevalence rates of over 20% in many sub-Saharan African countries, and with infection rates rising rapidly in other parts of the world, NGOs are funding that HIV/AIDS is affecting not only programme work but also staff. If NGOs are to be credible in these communities, they need to be seen to be addressing HIV/AIDS internally in a way that is consistent with their external messages. However, developing a workable comprehensive solution that covers policy, education and prevention, and treatment and care is not easy. This guide looks at the key issues involved in developing a workplace strategy and how different NGOs and commercial organisations are approaching these issues through a series of case studies. It also provides a guide to the key components of a successful strategy and a list of useful reference documents

Disentangling HIV and AIDS stigma in Ethiopia, Tanzania and Zambia

NYBLADE, Laura
et al
2003

Expand view

This report explores the causes, manifestations and consequences of HIV and AIDS related stigma in sub-Saharan Africa. Based on a study in Ethiopia, Tanzania and Zambia, it acknowledges stigma as complex, caused by incomplete knowledge, fears of death and disease and sexual transmission. Stigma is also influenced by socio-economic status, age and gender. The report also discusses in detail how people living with HIV react to stigma, and also how they and their families/ friends develop strategies to cope with stigma. Recommendations include the need to provide safe spaces to discuss the values and beliefs about sex, morality and death, find a common language to talk about stigma and ensure a contextually appropriate and ethically responsible role for people living with HIV

VIH/sida en la sociedad de la información

CABRERA, Marcelino
2003

Expand view

The communities of people living with HIV/AIDS are particularly active in the Network. The activity of these communities has not only served to support themselves, but has also made a contribution to immunologists. After exposing some elements of the relation of these communities and Internet throughout the last years, this case study observes how the use of the Internet contributes to improve the quality of life of patients. There is an emphasis on the influence of the use of the Internet in the management of side effects caused by treatments, subsequent use in doctor-patient relations and, concretely, in the process of therapeutic co-decision

Making a hero book : a guide for facilitators

MORGAN, Jonathan
2003

Expand view

This manual describes one of the tools used in "memory work", an approach to helping families and communities cope with HIV and AIDS. Through a series of art exercises and storytelling, children are encouraged to identify their heroes or role models. This process should help children affected by HIV/AIDS to cope with emotions (sadness, fear, anger), and to develop resilience and a positive approach to life. Through the process of developing a book, children are also encouraged to see themselves as heroes, to rely on their strengths and maximise their potential to overcome the problems they might encounter

HIV/AIDS : a resource for journalists

SOUL CITY INSTITUTE FOR HEALTH AND DEVELOPMENT COMMUNICATION
et al
2002

Expand view

A consice handbook to help journalists cover HIV/AIDS in an effective and responsible manner. Provides South African-based contacts, websites and basic information on a wide range of HIV-related issues

Pages

E-bulletin