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Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries

DEAF CHILDREN WORLDWIDE
November 2020

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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.

Topics are:

  • Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
  • Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India). 
  • Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
  • Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
  • Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)

 

 

Implementing music therapy through telehealth: considerations for military populations

VAUDREUIL, Rebecca
LANGSTON, Diane G
MAGEE, Wendy L
BETTS, Donna
KASS, Sara
LEVY, Charles
2020

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Purpose

Telehealth provides psychotherapeutic interventions and psychoeducation for remote populations with limited access to in-person behavioural health and/or rehabilitation treatment. The United States Department of Défense and the Veterans Health Administration use telehealth to deliver primary care, medication management, and services including physical, occupational, and speech-language therapies for service members, veterans, and eligible dependents. While creative arts therapies are included in telehealth programming, the existing evidence base focuses on art therapy and dance/movement therapy, with a paucity of information on music therapy.

 

Methods

Discussion of didactic and applied music experiences, clinical, ethical, and technological considerations, and research pertaining to music therapy telehealth addresses this gap through presentation of three case examples. These programmes highlight music therapy telehealth with military-connected populations on a continuum of clinical and community engagement: 1) collaboration between Berklee College of Music in Boston, MA and the Acoke Rural Development Initiative in Lira, Uganda; 2) the Semper Sound Cyber Health programme in San Diego, CA; and 3) the integration of music therapy telehealth into Creative Forces®, an initiative of the National Endowment for the Arts.

 

Results

These examples illustrate that participants were found to positively respond to music therapy and community music engagement through telehealth, and reported decrease in pain, anxiety, and depression; they endorsed that telehealth was not a deterrent to continued music engagement, requested continued music therapy telehealth sessions, and recommended it to their peers.

 

Conclusions

Knowledge gaps and evolving models of creative arts therapies telehealth for military-connected populations are elucidated, with emphasis on clinical and ethical considerations.

A conceptual framework for designing Ambient assisted living services for individuals with disabilities in Uganda and South Africa

KYAZZE, Michael
WESSON, Janet
NAUDE, Kevin
August 2019

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Background: Individuals with disabilities experience difficulty in using various everyday technologies such as computers and smartphones.

 

Objectives: To propose a conceptual framework that will lead to the development of practical and user friendly assistive technology.

 

Method: A literature review of challenges faced by individuals with physical disabilities was carried out. Interviews with adults with physical disabilities in Kampala, Uganda, and Port Elizabeth, South Africa, identified three main challenges with regard to using technology: using a mobile phone, controlling an electronic environment and using a computer.

 

Results: The challenges identified can be solved by taking into consideration the needs of individuals with disabilities. However, the design of new technologies and interaction techniques, such as natural hand gestures and voice, as input mechanisms has able-bodied individuals in mind. Individuals with disabilities are considered as an afterthought. The main reason for this is that individuals with a disability are a minority and hence it may not make economic sense for technology innovators to cater for their unique needs. A lack of practical guidelines on how to design for individuals with disabilities is another reason why designing for individuals with disabilities is often an afterthought.

 

Conclusion: This article proposes a conceptual framework that can be used by researchers and technology designers in order to design products that could cater for the unique needs of individuals with disabilities. The article also emphasises the importance of exploring alternative interaction techniques, as they could enable individuals with disabilities to fully utilise technologies such as smart phones, computers and smart home electronics.

 

 

African Journal of Disability, Vol 8, 2019

Community-based rehabilitation workers’ perspectives of wheelchair provision in Uganda: A qualitative study

SEYMOUR, Nikola
GEIGER, Martha
SCHEFFLER, Elsje
2019

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Background: The challenges of wheelchair provision and use in less resourced settings are the focus of global efforts to enhance wheelchair service delivery. The shortage of professional wheelchair service providers in these settings necessitates the collaboration of multiple stakeholders, including community-based rehabilitation (CBR) workers, whose role needs to be further understood.

 

Objectives: The aim of this study was to determine what CBR workers in three areas of Uganda perceived as (1) the challenges with wheelchair provision and use, (2) the factors contributing to these challenges, (3) the role they themselves can potentially play and (4) what facilitators they need to achieve this.

 

Method: This qualitative study in the transformative paradigm comprised focus group discussions to gather perceptions from 21 CBR workers in three areas of Uganda, each with an operational wheelchair service, participant observations and field notes. Thematic analysis of data was implemented.

 

Results: Community-based rehabilitation workers’ perceptions of challenges were similar while perceived causes of challenges differed as influenced by location, historical and current wheelchair availability and the CBR workers’ roles. Their main responsibilities included assistance in overcoming barriers to access the service, transfer of skills and knowledge related to wheelchairs, follow-up of users for wheelchair-related problem-solving, and user and community empowerment.

 

Conclusion: Community-based rehabilitation workers can contribute in various ways to wheelchair service delivery and inclusion of wheelchair users; however, their capabilities are not consistently applied. Considering the diversity of contextual challenges, CBR workers’ range of responsive approaches, knowledge of networks and ability to work in the community make their input valuable. However, to optimise their contribution, specific planning for their training and financial needs and effective engagement in the wheelchair services delivery system are essential.

 

 

African Journal of Disability, Vol 8, 2019

The impact of stroke on people living in central Uganda: A descriptive study

KAMWESIGA, Julius T.
Von KOCK, Lena K.
ERIKSSON, Gunilla M.
GUIDETTI, Susanne G.E.
2018

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Background: Knowledge about perceived impact of stroke on everyday life as well as rehabilitation needs after stroke in Uganda is necessary to identify and develop rehabilitation interventions.

 

Objectives: To explore and describe clinical characteristics and functioning during the acute or subacute phase and chronic phase, as well as the impact of stroke on everyday life during the chronic phase in stroke survivors in central Uganda.

 

Method: A cross-sectional observational study was conducted on a consecutively included acute or subacute (n = 58) sample and a chronic (n = 62) sample. Face-to-face interviews were conducted to collect demographic information and clinical characteristics. The Scandinavian Stroke Scale (SSS) was used to collect clinical characteristics, assess neurological impairment and define stroke severity. The Barthel Index was used to assess the level of dependence in activities of daily living. In addition, the Stroke Impact Scale (SIS) 3.0 Uganda version was used to assess the impact of stroke in everyday life as perceived by the individuals in the chronic sample receiving rehabilitation.

 

Results: The mean age of the acute/subacute sample was 49 years and 81% had moderate or severe stroke. The mean age of the chronic rehabilitation group was 53 years and 58% had mild stroke. Time since onset in the acute sample was between 2 days and 3 weeks, and time since onset for the chronic sample varied between 3 months and 3 years. Strength, hand function and participation were the most impacted SIS domains in the chronic sample.

 

Conclusion: People with severe and moderate stroke were more likely to be admitted to Mulago Hospital. The mean age in the study sample was lower than that in high-income countries. Further knowledge is needed regarding the impact of stroke to develop guidelines for stroke rehabilitation interventions feasible in the Ugandan healthcare context in both rural and urban areas.

“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.

Services for people with communication disabilities in Uganda: supporting a new speech and language therapy professional

MARSHALL, Julie
WICKENDEN, Mary
2018

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Services for people with communication disability (PWCD), including speech and language therapists (SLTs), are scarce in countries of the global South. A SLT degree programme was established at Makerere University, Uganda, in 2008. In 2011, an innovative project was set up to provide in-service training and mentoring for graduates and staff of the programme. This paper describes the project and its evaluation over three years. Three types of input: direct training, face-to-face individual and group meetings, and remote mentoring, were provided to 26 participants and evaluated using written and verbal methods. The first two types of input were evaluated mainly positively, while remote mentoring received more mixed evaluations. Less positive evaluations were linked to factors including resourcing, cultural perceptions about professional roles and services, work patterns, power/status, engagement, perceptions of help-seeking, community recognition of the needs for services for PWCD. Findings suggest that participatory approaches, flexibility, reflexivity and open discussion with participants around support and work challenges, are important. Power gradients between white Northern ‘experts’ and relatively inexperienced East African SLTs, contributed to some challenges. Structural issues about degree programme structures and statutory bodies, provide lessons about the development of new services and professions in low-income settings. 

 

Disability and the Global South, 2018 Vol.5, No. 1

The long-term impact of wheelchair delivery on the lives of people with disabilities in three countries of the world

SHORE, Susan
2017

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Background: Lack of access to mobility for people with disabilities, particularly in less- resourced settings, continues to be widespread. Despite challenges to wheelchair delivery, the benefits to health, employment, social integration and life satisfaction are apparent.


Objectives: Previous studies have explored the impact of receiving a wheelchair on the lives of the users through cross-sectional or short-term longitudinal analysis. The current study was undertaken to evaluate whether previously reported changes were sustained after 30 months of use, and whether results varied between two differing models of a wheelchair.


Method: One hundred and ninety-one subjects from Peru, Uganda and Vietnam received one of two models of wheelchair provided by the Free Wheelchair Mission. Using interviews to record survey results, data were collected at the time the wheelchair was received and following 12 and 30 months of use. Variables of overall health, employment, income and travel were explored through non-parametric analysis.


Results: There was a significant improvement in overall health and distance travelled after 12 months, but these changes were no longer significant by 30 months (Friedman test for overall change, p = 0.000). Employment status showed a small but significant increase at 12 and 30 months (Cochran’s Q, p = 0.000). Reported income increased slowly, becoming significantly different at 30 months (Friedman test, p = 0.033). There was no association between the model of wheelchair received and the incidence of pressure ulcers, pain or maintenance required. There was higher satisfaction with the GEN_2 wheelchair at 12 months (p = 0.004), but this difference was not apparent by 30 months. Overall wheelchair satisfaction and maintenance levels were favourable.


Conclusion: While overall health status, and distance travelled into the community fluctuated over time, receipt of one of two models of a wheelchair in less-resourced settings of the world appears to have a positive sustained impact on employment and income. Further investigations should be carried out to confirm these results and explore the factors responsible for fluctuating variables. This study affirms the importance of long-term follow-up of outcomes associated with wheelchair distribution in less-resourced environments.

Disability, CBR and inclusive development (DCID), 2017, Vol. 28 No. 1

2017

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Titles of research articles in this issue of the journal are:

  • Community Action Research in Disability (CARD): An inclusive research programme in Uganda
  • The Impact of Community-Based Rehabilitation in a Post-Conflict Environment of Sri Lanka
  • Communication Disability in Fiji: Community Cultural Beliefs and Attitudes
  • The Search for Successful Inclusion
  • Effect of Music Intervention on the Behaviour Disorders of Children with Intellectual Disability using Strategies from Applied Behaviour Analysis
  • The Effects of Severe Burns on Levels of Activity

Brief reports

  • Towards Accessible Built Environments in Universities in Ghana: An Approach to Inclusiveness Assessment
  • Physiotherapy Students’ Awareness of Community Health in India

Integration of childhood tuberculosis into maternal and child health, HIV and nutrition services: A case study from Uganda

VERKUIJL, Sabine
et al
September 2016

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"Country case studies were conducted in Uganda and Malawi to document and analyse experiences and perspectives on childhood TB integration into other programmes at country level and related health system requirements. The aim was to inform the broader thinking about integration of childhood TB services. The Uganda case study identified and described different approaches to integration and unpacked the integration process. The perspective on TB integration of different relevant health actors at national and district level are described. The case study used a health systems approach and focused on the community and primary levels of the health system, paying attention to factors related to children of different ages in a lifecycle approach. The methodology for the case study included document review, consultations with key health actors at national and district level, a facility visit and a participatory workshop at national level. An analytical framework approach was used to investigate the extent of integration of childhood TB interventions in multiple dimensions. An assessment tool for the case studies was developed, summarising the assessment questions by theme, combining a number of existing tools and frameworks on health care integration in general and childhood TB and iCCM benchmarks"

Parental stress and support of parents of children with spina bifida in Uganda

BANNINK, Femke
IDRO, Richard
VAN HOVE, Geert
2016

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Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.

 

Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.

 

Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.

 

Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).

 

Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

Equal basis 2014 : access and rights in 33 countries

BURKE, Megan
PERSI VICENTIC, Loren
December 2014

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This report presents research about efforts to meet the needs and uphold the rights of persons with disabilities in four thematic areas: health care, rehabilitation, work and employment, and accessibility and enabling environments. Research findings are drawn from the experiences of landmine and cluster munition survivors and other persons with similar needs in 33 countries experiencing armed conflict or emerging from armed conflict or political or economic transition. Findings are placed within the context of relevant articles of the Convention on the Rights of Persons with Disabilities and the World Report on Disability

Applied research on disability in Africa : general mapping

INTERNATIONAL FOUNDATION OF APPLIED DISABILITY RESEARCH (FIRAH)
2014

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“The goal of this literary review is to report on existing knowledge about applied research on the African continent, regarding the living conditions of people with disabilities, poverty, violence and sexual abuse especially regarding children and women with disabilities, community-based rehabilitation and employment”

Stakeholder consultations on community-based rehabilitation guidelines in Ghana and Uganda

WICKENDEN, Mary
MULLIGAN, Diane
FEFOAME, Gertrude O
KATENDE, Phoebe
2012

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Background: The focus of this paper is the new broadened conceptualisation of community-based rehabilitation (CBR), which promotes the empowerment and inclusion of people with disabilities (PWDs) in diverse ways within their communities. New guidelines for CBR were launched in October 2010 by WHO/ILO/UNESCO/IDDC, and this paper describes part of the process by which these were produced using participatory approaches involving International Non-Government Organisations (INGOs) and local partners. The paper reviews the evolution of CBR and describes how grassroots consultation by INGOs working with key stakeholders in the disability arena can influence policy on disability issues, and reciprocally how policy change can inform organisations’ practice and research activities. This ongoing bidirectional influence is illustrated with data from the participatory consultation process about the new CBR guidelines carried out by Sightsavers in Uganda and Ghana

 

Objectives: To consult with key stakeholders in the disability arena in Uganda and Ghana, in order to gain their opinions and suggestions for improvements to the then draft CBR guidelines, as part of a wider global participatory process of consultation on the document.

 

Methods: The INGO Sightsavers gathered qualitative data through focus group discussions and questionnaires in both countries.

 

Results: The participants’ critiques of the draft guidelines carried out in multiagency participatory processes were analysed thematically and fed back to the CBR guidelines editorial team.

 

Conclusion: The paper concludes that stakeholders in diverse communities can actively contribute to shaping policy and practice through participatory consultations. Local and national government and non-government organisations and other key informants can inform the development of national and international guidelines and policies. This participatory approach can be successfully facilitated by INGOs. In turn, these processes have prompted organisations to adapt their own policies and programmes in order to be more responsive to the local needs and concerns of PWDs.

"Out of the shadows" : a qualitative study of parents’ and professionals’ attitudes and beliefs about children with communication disability in Uganda and how best to help them

MCGEOWN, Julia
September 2012

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"Communication forms the basis of human life and the complex ways with which humans can communicate and interact with each other sets us apart from all other species. However, not all humans are able to communicate effectively due to a range of communication impairments. The overall aim of this study is to generate solutions and recommendations to remove any barriers preventing these children from communicating effectively and potentially to improve their quality of life"
Dissertation submitted in part fulfilment of the requirements for a Masters degree at the Centre for International Health and Development (CIHD) at University College London (UCL) Institute of Child Health (ICH)
The user has given permission for the uploaded document to be reproduced and made publicly available on the Source website

Developing intervention strategies to improve community health worker motivation and performance

FRANK, Tine
KALLANDER, Karin
2012

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"This 28-page learning paper describes Malaria Consortium’s experience with Integrated Community Case Management (ICCM) in malaria prevention and treatment in Mozambique and Uganda. ICCM is an approach where community-based health workers are trained to identify, treat, and refer complex cases malaria (and other diseases) in children"
The Learning Series Papers

Armed violence and disability : the untold story

THAPA, Rashmi
THALER, Kai
2012

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"This study aims to understand the links between armed violence and impairments that can lead to disabilities. It focuses on individuals who sustain impairments resulting from incidents of armed violence. The Disability Creation Process is adapted to analyse the combination of health problems, discrimination and socio- economic exclusion that can lead to disability for people who have sustained serious injury and/or lasting impairments as a result of armed violence...This report is written in a linear progression keeping the research project’s goals, objectives and approach as its backdrop. Chapter 1 (introduction) gives an overview of armed violence along with the justification of this research and its methods. Chapter 2 presents the findings from the four case study regions in countries, situated within its contextual analysis. Each case study draws on its discussion and summary of findings. Chapter 3 presents the discussion and lessons learned from this research, placing assistance and people at the centre of armed violence initiatives. Finally, a glossary, Annexes and references as endnotes are at the end of the report with notes at the end of every page"

CBR stories from Africa : what can they teach us?

COLERIDGE, Angela
HARTLEY, Sally
Eds
2010

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"Community Based Rehabilitation (CBR) is an evolving concept. Its effectiveness depends on continuous reflection, debate and learning. This book aims to facilitate this process through the stories of five CBR programmes in Africa, told by those involved with the programmes and reflected on with honesty...Each of the five programmes has been invited to document their work, describing how its programme started and assessing the effectiveness of the approach it has chosen. They were asked to identify their successes and challenges, and to reflect on how difficulties are being overcome. Life stories illustrate the impact each approach can have on individual lives. The book offers itself as a reflective tool, to be used by practitioners. Each chapter asks specific questions of its readers, inviting them to draw comparisons with their own programme. The concluding section of the book outlines ideas for evaluating and developing their CBR programmes"

Accessibility standards : a practical guide to create a barrier-free physical environment in Uganda

UGANDA NATIONAL ACTION ON PHYSICAL DISABILITY (UNAPD)
Ministry of Gender
Labour and Social Development
2010

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This guide promotes better accessibility for persons with physical disabilities in Uganda by providing information for constructors or developers to build accessible environments. It presents information about how to construct standard ramps, toilets, lifts, road in addition to wells, furniture and more. These accessibility standards are useful for Architects, policy makers and implementers on accessibility requirements during the design and implementation of construction projects

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"

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