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Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Academic Outcomes and Coping Mechanisms of Children using Cochlear Implants in Mainstream Schools in Kerala, India

GEORGE, A
JOY, J M
SREEKUMAR, S
2021

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Purpose: The aim of the present study was to understand the academic outcomes of children using cochlear implants in mainstream schools in Kerala, India and to explore the compensatory strategies used by them to overcome the difficultiesfaced in classrooms.

 

Method: Thirty-one children using cochlear implants who were attending first and second grades in mainstream schools, and their parents and teachers participated in the study. Teachers were asked to rate a questionnaire, “Teachers’ Perceptions of Academic Outcomes”, which consisted of five sections – oral comprehension, oral expression, reading, writing and mathematics. The performance of the children using cochlear implants was compared with the performance of typically hearing children in the class. The grades obtained in the previous examination were also used for the comparison. Information was collected regarding difficulties faced by the children inside the classroom and their strategies to overcome the challenges.

 

Results: The class teachers rated the performance of 71 % of these children as ‘above average’. Though the academic outcomes were found to be good on the questionnaire and classroom tests, most of the children with cochlear implantsfaced various difficulties and had used different compensatory strategies to give their optimum performance in the classroom.

 

Conclusion: The study emphasizes the importance of having mid- and long-term follow-ups with children using cochlear implants, even after mainstreaming. It is necessary to orient and train teachers about the needs of these children and to implement support strategies in mainstream schools.

Effectiveness of Community-Based Rehabilitation on the lives of Parents of Children with Cerebral Palsy: A Mixed Method Study in Karnataka, India

Bokalial, Doly
Hossain, Forhad Md
Kumar, Senthil N S
Bajracharya, Shristi
2020

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Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.

 

Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.

 

Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.

 

Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.

Effects of Biofeedback and Task-Oriented Intervention on Balance Confidence and its Relationship with Social Participation among Stroke Survivors

Pachiappan, Elumalai
2020

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Purpose: The study aimed to compare the effects of balance training on balance confidence and its relationship with social participation among clients with stroke.

 

Method: A pre- and post- experimental group design was used. Stroke survivors who met the inclusion criteria were consecutively assigned to two groups (task- oriented and biofeedback). Participants in the task-oriented group received task- oriented activities for 20 minutes and the biofeedback group received intervention in correckta (equipment used for balance training) for 20 minutes, along with conventional occupational therapy - 5 sessions per week, for 12 weeks. Balance Confidence Scale was used for measuring balance confidence, and Frenchay Activities Index (FAI) was used to measure social participation. Statistical calculations were performed with SPSS version 16.0 package. Statistical tests were carried out with the level of significance set at p≤ 0.05.

 

Results: The findings suggest that both the biofeedback and task-oriented groups showed significant improvement in balance confidence and there was no statistically significant difference between the groups. There was a moderate to good relationship between balance confidence and social participation.

 

Conclusions and Implications: There is evidence that many stroke survivors have low balance confidence. Therapists should assess the balance confidence of their clients and encourage them to participate in these beneficial interventions.

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

  • Types of social protection schemes for persons with disabilities
  • Levels of investment in social protection for persons with disabilities
  • Coverage of persons with disabilities by social protection
  • Impacts of social protection on persons with disabilities
  • Barriers to accessing social protection and measures to address them
  • Links between social protection schemes and other public services

Effect of an Aerobic Fitness Programme Intervention on the Motor Proficiency of Children with Mild and Moderate Intellectual Disabilities in India

KALGOTRA , Ritu
WARWAL, Jaspal Singh
2019

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Purpose: The study aimed to assess the effect of an Aerobic Fitness Programme intervention on children with mild and moderate intellectual disabilities in Jammu, India.

 

Method: In a pre-test post-test control group design, 66 children with mild and moderate intellectual disabilities, who fulfilled the inclusion and exclusion criteria, were placed in control and experimental groups. A validated tool, the Test of Motor Proficiency, was used as a pre-test and post-test measure to assess the effect of the intervention.

 

Results: The mean difference between the two groups of children with mild and moderate intellectual disabilities was significant. ANCOVA analysis indicated F (1,28) = 312.13, P =.00 in children with mild intellectual disabilities, and F (1,32) = 22.540, P =.00 in children with moderate intellectual disabilities. The intervention was effective in developing visual motor control, upper limb speed and dexterity, running speed and agility, balance, strength, and upper limb coordination. It was ineffective in improving bilateral coordination in both groups of children with intellectual disabilities. 

 

Conclusion: This intervention programme can be introduced into the daily curriculum of children with intellectual disabilities at special schools. It would be helpful in compensating for the lack of physical activity due to classroom-based teaching.

Missing millions: How older people with disabilities are excluded from humanitarian response

SHEPPARD, Phillip
POLACK, Sarah
McGIVERN, Madeleine
July 2018

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The aim of this study was to explore the experiences of older people with disabilities across a range of humanitarian settings, considering:

  • whether older people with disabilities have additional needs and challenges accessing humanitarian assistance and protection
  • what factors facilitate or limit access by older people with disabilities to humanitarian assistance and protection
  • to what extent is humanitarian response inclusive of older people with disabilities

A systematic literature review of published studies was conducted. Key online humanitarian guidelines were explored to review how far they explicitly address older people with disabilities. Data from six population-based disability surveys comparing the living situation of older people with and without disabilities were analysed. These included databases from two crises-affected populations in Haiti (post-earthquake) and Palestine. Data from four non-humanitarian settings was also reviewed to explore more broadly the situation for older people with disabilities – India, Guatemala, Cameroon and Nepal. Interviews were held with older people with disabilities, members of their families and local key informants in two conflict-affected populations in Ndutu and Mtendeli refugee camps in Western Tanzania, and Donetsk and Luhansk regions of Eastern Ukraine to find out about their experiences. Staff of five international agencies working in humanitarian response were also interviewed. 

 

Findings highlight particular issues facing older people with disabilities in humanitarian crises: more risk escaping from danger;  barriers to accessing social protection and work; barriers to accessing health and rehabilitation services; barriers to accessing food and other essentials; unsuitable housing and poor living conditions;  insecurity and discrimination; threats to dignity and independence; social isolation and loneliness; risks to mental health; and missing from humanitarian response.

 

A table brings together the findings from the different components of the research to show the needs, risks, barriers and enablers for older people with disabilities identified in the research. Recommendations are provided to humanitarian donors, policy makers and practitioners

Disability and vocational rehabilitation in rural settings

HARLEY, Debra
et al
2018

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A graduate student textbook offered in 39 chapters, each with different authors and subjects. Abstracts, test questions and citations are freely available on-line. Full text is charged for. The book surveys rehabilitation and vocational programs aiding persons with disabilities in remote and developing areas in the U.S. and abroad. Contributors discuss longstanding challenges to these communities, most notably economic and environmental obstacles and ongoing barriers to service delivery, as well as their resilience and strengths. Considerations are largely of the US but there is a chapter on each of Asia and Pacific region, Australasia, Canada, Mexico, India, Turkey, Colombia and the UK. 

 

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Ensuring universal access to eye health in urban slums in the Global South: the case of Bhopal (India).

PREGEL, Andrea
et al
October 2017

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In the context of its Urban Eye Health Programme in Bhopal (India), Sightsavers launched a pilot approach aimed at developing an Inclusive Eye Health (IEH) model and IEH Minimum Standards.

Accessibility audits were conducted in a tertiary eye hospital and four primary vision centres located within urban slums, addressing the accessibility of physical infrastructures, communication and service provision. The collection and analysis of disaggregated data inform the inclusion strategy and provide a baseline to measure the impact of service provision. Trainings of eye health staff and sensitisation of decision makers on accessibility, universal design, disability and gender inclusion are organised on a regular basis.

A referral network is being built to ensure participation of women, people with disabilities and other marginalised groups, explore barriers at demand level, and guarantee wider access to eye care in the community. Finally, advocacy interventions will be developed to raise awareness in the community and mainstream disability and gender inclusion within the public health sector.

Advocacy Campaign for the Rights of People with Disabilities: A Participatory Action Research within a Community-based Rehabilitation Project in Vangani, Maharashtra

JAISWAL, Atul
GUPTA, Shikha
2017

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Purpose: This paper aimed to demonstrate how participatory action research (PAR) within a Community-based Rehabilitation (CBR) project facilitated community participation to advocate for the rights of people with visual impairment. An advocacy campaign, led by the local people with and without disabilities, was launched for the construction of an accessible foot over- bridge (FOB) at Vangani railway station in Maharashtra, India.

 

Methods: The PAR approach was used to explore the issues faced by the local people with visual impairment. It ensured maximum community consultation, engagement and, consequently, meaningful outcomes for the community. Advocacy tools such as video documentary, online petition, media advocacy, and signature campaign were employed to publicise the issue on a larger platform. Sources for this paper included quantitative data from the survey of Vangani community and documents such as CBR project reports, media coverage articles, minutes of the meeting and correspondence with the Central Railways during the advocacy campaign that was conducted from 2012 -  2015.

 

Results: After 12 months of consistent advocacy, the Ministry of Railways sanctioned INR 15 million for the construction of the foot over-bridge. The construction work on the foot overbridge was completed in December 2016 and now it is open for public use..

 

Conclusion and Implications: This study illustrates how PAR within a CBR project successfully used an advocacy campaign as a tool for community participation, action and change. Although geographically limited to rural pockets of Maharashtra state, the learning experiences brought out some of the elements crucial for the success of an advocacy intervention within CBR programmes for the rights of people with disability in India.

Representation, access and contestation: Facebook and vision impairment in Jordan, India, and Peru

PAL, Joyojeet
ALFARO, Ana Maria Huaita
AMMARI, Tawfiq W
CHHABRA, Sidharth
LAKSHMANAN, Meera
2015

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This paper presents qualitative research on the use of Facebook by visually impaired people and organizations representing them in Jordan, Peru, and India. We found that individuals and organizations have very different motivations and pathways for using social media. Social media serve as a means to help individuals with vision impairments to expand their social circles, network with casual acquaintances, and find various kinds of social and technical resources independently. However on issues of representation we found that social media have the potential to play a double-edged sword, reinforcing in some cases the same stereotypes that individual users of assistive technology (AT) sought to overcome by using technology in their professional lives. We find that individuals often characterize social media and assistive technology in the same vein — suggesting that for many parts of the global South, the dramatic change in the means and ability to leverage social and professional possibilities has not come from any one technology alone, but from a broader evolution of the technological environment available to people with vision impairments. Access to social media and technology disrupt an environment in which social and economic spaces for people with disabilities are still a zone of contestation between a dominant discourse of vision impairment enforced by generations of negative representations of disability, and a new world of technology users challenging representations and assumptions as engaged, connected professionals.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 3

Knowledge and Beliefs about Ear and Hearing Health among Mothers of Young Children in a Rural Community in South India

NARAYANSAMY, M
RAMKUMA, V
NAGARAJAN, R
2014

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Purpose: To study the knowledge and beliefs about ear and hearing healthcare among mothers from a rural community.

 

Method: In 1 week, 6 focus group discussions were conducted across 6 villages of a district in Tamil Nadu in southern India. The participants were 60 mothers who had children below 5 years of age.

 

Results: Mothers in this rural community had information about some aspects of ear and hearing healthcare. They were aware that use of hairpins and safety- pins to clean ears was harmful; they were knowledgeable about ways to identify hearing ability (child responds to name call, verbal instructions, and startles at loud sounds); and, conditions like consanguinity and malnutrition of expectant mothers were recognised as risk factors for hearing loss. However, misconceptions also existed. The practice of pouring herbal juices to remove insects in the ear continued; there was the perception that all children with a hearing problem were “deaf”, and a lack of awareness about the possibility of partial/unilateral hearing loss. Regarding the age of identification, mothers believed that a child’s ability to speak and the ability to hear was pertinent to assess hearing. None of the mothers related normal speech development to normal hearing.

 

Conclusion: For the success of a community-based hearing screening programme, it is important to utilise the existing knowledge of the mothers, and simultaneously attempt to fill in gaps in knowledge and clarify misconceptions. These measures will facilitate greater compliance from the community in achieving the goals of early identification and early intervention for problems of hearing loss.

Fatigue and Functional Capacity in Persons with Post-Polio Syndrome: Short-term Effects of Exercise and Lifestyle Modification Compared to Lifestyle Modification Alone

SHARMA, S S
SHETH, M S
VYAS, N J
2014

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Purpose: Post-polio Syndrome (PPS) affects polio survivors many years after the initial attack, and causes new musculoskeletal symptoms and decline in physical function. This study aims to compare the effect of exercise and lifestyle modification versus lifestyle modification alone, on fatigue and functional capacity in persons with PPS.

 

Method: An experimental study was conducted at the physiotherapy department of VS Hospital in Ahmedabad. As per the criteria of Halstead (1985), 21 PPS subjects who were between 18 and 65 years of age, and able to walk indoors and outdoors, with or without assistive aids, were included. They were randomly allocated into 3 groups using the envelope method. Those with physician- diagnosed respiratory or cardiac insufficiency, disabling co-morbidity which interfered with the intervention programme or influenced the outcome, and those unable to cooperate due to cognitive impairment or use of any psychotropic drugs, were excluded. Fatigue and functional capacity were measured using Fatigue Severity Scale (FSS) and 2-minute walk distance, respectively. Physical and psychological functions were assessed using Patient Reported Outcome Measurement Information System (PROMIS) questionnaire and Patient Health Questionnaire (PHQ-9) respectively. Intervention was given for 5 days a week, over 4 weeks. Group A received exercise and lifestyle modification, group B received lifestyle modification alone and group C continued their usual routine for 1 month.

 

Results: There was a significant difference in fatigue and functional capacity within groups A and B, with group A showing better reduction in fatigue than groups B or C. Physical function improved only within group A, and a significant difference was seen compared to groups B and C. Psychological function showed no difference within or between the groups.

 

Conclusion: There was improvement in fatigue, functional capacity and physical function in PPS subjects after 4 weeks of exercise and lifestyle modification. Lifestyle modifications alone for 4 weeks improved fatigue and functional capacity in PPS subjects. There is significant reduction in fatigue and improvement in functional capacity when lifestyle modification advice is given along with exercise.

Effects of Multisensory Training on Balance and Gait in Persons with Type 2 Diabetes: A Randomised Controlled Trial

KUTTY, N A M
MAJIDA, N A
2013

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Purpose: Progressive deterioration of physical function occurs in persons with Type 2 diabetes and peripheral neuropathy. This study assessed the effects of multisensory training on balance and gait in persons with diabeticneuropathies.

 

Method: Thirty two persons with peripheral neuropathies were enrolled, randomised, and subdivided into 2 groups - an experimental group of 16 participants with diabetes (65 ± 2.12 years) and a control group of 16 participants with diabetes (68 ± 2.17 years). For 6 weeks, both groups were given health education on diabetes for 30 minutes a week. In addition, the experimental group practised a multisensory exercise programme for 30 minutes, 3 times a week over 6 weeks. Outcome measures used were ‘timed up and go’ test for assessing balance and ‘6-minute walk’ test for gait. Standard descriptive statistics were used to report means, standard deviation, and range for baseline characteristics. Paired and unpaired ‘t-tests’ were used wherever necessary, to determine significant differences in data among groups and between pre-test and post-test scores (p<0.05).

 

Results: By the end of the trial period, the intervention group showed a significant improvement in scores of the ‘timed up and go’ test (t= 14.7092), but there was no statistically significant difference in the ‘6-minute walk’ test scores (p=0.7206, t= 0.3644).There was no difference for both measures in the control group.

 

Conclusion: The study showed that multisensory exercises could improve balance in persons with Type 2 diabetes and peripheral neuropathy. The findings suggest that along with physiological sensory factors, cognitive-behavioural factors and strengthening of the lower limb muscles should be considered when treating diabetic persons with gait alterations.

Impact of CBR : impact of community-based rehabilitation programme in Karnataka India

BIGGERI, Mario
et al
2012

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"The main goal of the research was to understand and measure the overall role and impact of CBR in improving the quality of life of persons with different types of impairments, as well as different demographic, social and economic backgrounds. We therefore investigated the effectiveness of CBR programmes in improving the control that persons with disabilities have over their daily lives, their participation in different aspects of community life (i.e. combating stigma and prejudice) and their access to various services over the five domains of the CBR matrix (health, education, livelihood, social and empowerment)"

Promoting empowerment|Emancipatory research in community-based rehabilitation programmes : a guide for CBR programmes managers

DEEPAK, Sunil
2012

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This practical guide is written for organizations and persons involved in CBR projects. It is also targeted at DPOs, especially those working at community and peripheral levels. The information provides a straight forward guide for people working in CBR programmes to carry out simple emancipatory research (ER). Examples are provided from successful ER projects. This resource is useful to anyone interested in ER in community-based rehabilitation programmes

Availability and accessibility of treatment for persons with mental illness through a community mental health programme

NAVANEETHAM, Janardhana
RAGHUNANDAN, Shravya
NAIDU, D M
HAMPANNA, H
2011

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This article describes experiences in implementing a community mental health and development project in a rural district in southern India, including the position of persons with mental illness when the project was initiated, the challenges the faced and the strategies that were developed to overcome these challenges. The authors conclude that when services are locally available, persons with mental illness can be treated and rehabilitated within their own community. They can live with dignity and their rights are respected. There is a great need for inclusion of persons with mental illness in the existing developmental activities and in disabled persons’ organizations.

 

 

Disability, CBR and Inclusive Development, Vol 22, No 2

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

Facilitating HIV testing and disclosure with children and adolescents

INDIA HIV/AIDS ALLIANCE
June 2009

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This report looks at the challenges in facilitating testing and disclosure for children in 0-6, 7-14 and 15-18 age groups. The report is based on operations research conducted by India HIV/AIDS Alliance in Andhra Pradesh and Manipur. This operations research was aimed at understanding current challenges with facilitating testing and disclosure for children, and to provide possible short to medium term solutions. Three broad objectives of the study were: * Identifying challenges and factors that prevent the community from seeking HIV testing of their children * Understanding issues related to disclosure of HIV status to children, and the social impact related to disclosure faced by parents and children * Using the study findings in formulating practical solutions to address these issues, and to come up with practical recommendations on building links between policy and practice

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