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Barriers to Early Diagnosis, Intervention and Social Integration of Children with Developmental Disabilities: A Qualitative Study from Rural Villages and a Poor Urban Settlement of Bangalore, South India

GEORGE, C E
NORMAN, G
BENJAMIN, T E
MUKHERJEE, D
2014

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Purpose: Children with developmental disabilities, if given skilled early intervention, have the potential to lead productive lives and can contribute to the social and economic development of their communities. This study explores the barriers to early diagnosis and intervention for children with developmental disabilities who live in rural and urban areas of Bangalore city, India.

 

Methods: The study was conducted in selected villages of Devanahalli Taluk in Bangalore Rural District, and in Devara Jeevanahalli (DJ Halli), a shanty town in Bangalore city. The qualitative study design consisted of in-depth interviews and focus group discussions (FGDs).Parents of children with developmental disabilities, doctors practising in the area and school teachers were interviewed using a purposive sampling framework. An inductive, data-driven thematic analysis was carried out.

 

Results: The physician-related barriers were identified as lack of skills and understanding of children with developmental disabilities, lack of knowledge and resources, lack of specialist back-up services, and communication difficulties with regard to conveying bad news to clients. Parent-related barriers were financial constraints, delay in accepting the diagnosis, and prevalent myths, beliefs and stigma pertaining to disability. The teachers viewed children with special needs as an additional responsibility, and were also apprehensive about the attitudes and interaction of other children at school with children with disabilities.

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.

Knowledge Management-based Classification Method for Disability-Inclusive Business

SANO, R
CHANDARASUPSANG, T
2014

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Purpose: This study provides evidence to clarify disability inclusiveness in activities of rural business. As an alternative to the analysis method that deals with disability-inclusiveness as a vague concept, knowledge management principles were applied to propose a classification method for disability-inclusive business as an emerging concept at the community level.

 

Methods: The analysis focuses on: 1) productivity of entrepreneurs with disabilities; 2) knowledge of entrepreneurs with disabilities; and 3) understanding of customers. A total of 50 entrepreneurs with disabilities in micro and small businesses in Southeast Asia were identified in this context. Data were collected and analysed according to a story-based knowledge management approach and value chain analysis. Fuzzy logic analysis which exploited domain ontology was utilised to convert knowledge from tacit to explicit, in line with knowledge management principles. A numeric weight based on linguistic variables became available to describe each disability-inclusive business case, as well as the arrangements of fuzzy sets.

 

Results: Out of 50 cases, 7 were classified as fully disability-inclusive while 14 were classified as not disability-inclusive. Productivity of entrepreneurs with disabilities in 3 elements of the value chain, namely procurement, product/service development and distribution, was observed to be significant. The Study showed that disability-related knowledge of entrepreneurs with disabilities could contribute to business performance according to the key success factors to enhance added value. Two elements of the value chain, namely sales/marketing and customer service, are not the decisive factors to define and clarify disability-inclusiveness. 

 

Conclusion: Settings in Southeast Asia are diverse and at varying stages of economic and social development; hence the environment which promotes the disability-inclusive business concept may be inconsistent. Micro and small- scale rural businesses were tackled as a first step to evaluate comparative efforts of each case of disability-inclusive business from the viewpoint of entrepreneurs with disabilities. Therefore, in highlighting the differences, it is recommended that further research should seek to apply weighting factors depending on the individual size, contents and scale of major business areas.

Policy implementation in wheelchair service delivery in a rural South African setting

VISAGIE, Surona
SCHEFFLER, Elsje
SCHNEIDER, Marguerite
2013

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Background: Wheelchairs allow users to realise basic human rights and improved quality of life. South African and international documents guide rehabilitation service delivery and thus the provision of wheelchairs. Evidence indicates that rehabilitation policy implementation gaps exist in rural South Africa.

 

Objectives: The aim of this article was to explore the extent to which wheelchair service delivery in a rural, remote area of South Africa was aligned with the South African National Guidelines on Provision of Assistive Devices, The United Nations Convention on the Rights of Persons with Disabilities and The World Health Organization Guidelines on Provision of Wheelchairs in Less-Resourced Settings.

 

Method: Qualitative methods were used. Data were collected through semi-structured interviews with 22 participants who were identified through purposive sampling. Content analysis of data was preformed around the construct of wheelchair service delivery.

 

Results: Study findings identified gaps between the guiding documents and wheelchair service delivery. Areas where gaps were identified included service aspects such as referral, assessment, prescription, user and provider training, follow up, maintenance and repair as well as management aspects such as staff support, budget and monitoring. Positive findings related to individual assessments, enthusiastic and caring staff and the provision of wheelchairs at no cost.

 

Conclusion: The gaps in policy implementation can have a negative impact on users and the service provider. Inappropriate or no wheelchairs limit user function, participation and quality of life. In addition, an inappropriate wheelchair will have a shorter lifespan, requiring frequent repairs and replacements with cost implications for the service provider.

Seeking care for epilepsy and its impacts on households in a rural district in southern Malawi

MUNTHALI, Alister
BRAATHEN, Stine H
GRUT, Lisbet
KAMALERI, Yusman
INGSTAD, Benedicte
2013

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Background: Epilepsy is a disability as defined in the 2012 Disability Act of the Government of Malawi.

 

Objectives: This article explores the health-seeking behaviour of people with epilepsy in a rural town in southern Malawi and how having a person with epilepsy impacts on the households’ productivity.

 

Method: A snowball approach was used to identify persons with various forms of disabilities. The article is based on a bigger study carried out in Malawi which explored how persons with disabilities seek health care. In this bigger study, a total of 63 interviews were done with persons with disabilities or their guardians. Eight of the 63 interviews were with persons with epilepsy and this article is based on these interviews.

 

Results: The study found that persons with epilepsy seek both traditional and modern medicines to treat the condition. Informants mentioned that barriers to accessing western treatment include lack of medicines, congestion at health facilities, lack of knowledge about epilepsy, misdiagnosis by health workers and the belief that epilepsy caused by witchcraft cannot be treated by western medicine. The study also highlights the wider impacts of epilepsy on the household such as the failure of children to attend school, children dropping out of school, stigma and discrimination and households being driven deeper into poverty as a result of seeking care for members with epilepsy.

 

Conclusion: The existing barriers to accessing treatment for epilepsy can be addressed by using a combination of public education, simple treatments and regular reviews. Ensuring constant availability of drugs for the treatment of epilepsy is key to effective treatment of the condition. This would contribute to closing the treatment gap for epilepsy as advocated by the Global Campaign against Epilepsy.
 

Strategy report on disaster risk management, reduction and response in Mongolia

JEGGLE, Terry
May 2013

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"The report summarizes the current Disaster Risk Management (DRM) situation in Mongolia and draws conclusions based on initial scoping assessments of the advisor. These observations underpin recommendations for further strategic policy and programme development in the country consistent with Government interests and through United Nations and wider international organizations’ involvement to strengthen the DRM and specifically disaster risk reduction (DRR) capacities of the institutional mechanisms, policies and regulatory frameworks in Mongolia. The author has based his analysis on present circumstances in the subject area since 2005, and it is projected from current conditions and suggested trends at the present time forward to anticipated needs and conditions up to 2020"

Accessing community health services: challenges faced by poor people with disabilities in a rural community in South Africa

GRUT, Lisbet
MJI, Gubela
BRAATHEN, Stine H
INGSTAD, Benedicte
2012

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Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person’s life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person’s perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person’s history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalization of health professional’s training, and include a patient’s perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognized and utilized.

Mental Health and Quality of Life of Caregivers of Individuals with Cerebral Palsy in a Community Based Rehabilitation Programme in Rural Karnataka

DEEPTHI, N
KRISHANMURTHY, A
2012

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Background: Cerebral palsy is a type of non-progressive central nervous system disorder with multiple impairments. As there are sensory, communicatory and intellectual impairments, providing care at home may be stressful and affect to the physical and mental health of the caregivers. This in turn could interfere with rehabilitation of persons with cerebral palsy.

 

Purpose: This study assesses the mental health status and quality of life of caregivers of persons with disabilities. The study group consisted of caregivers of 23 children with cerebral palsy and intellectual disability.

 

Method: The needs of the children with disabilities were assessed using a pre- tested interview schedule, while caregivers were administered GHQ-28 and WHO-QOL.

 

Results: Thirteen (56.52%) of the primary caregivers tested positive for GHQ. The psychological and environmental domains of QOL were found to be most affected, while the physical and social domains were relatively better.

 

Conclusion: There was a significant (p<0.05) correlation between the GHQ scores and quality of life.

Towards equitable access to medicines for the rural poor : analyses of insurance claims reveal rural pharmacy initiative triggers price competition in Kyrgyzstan

WANING, Brenda
et al
December 2009

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This article examines medicines price competition that ensued in a rural village in Kyrgyzstan after the opening of a small network of non-profit pharmacies created and managed by an NGO. While the rural pharmacies were created to increase access to medicines in villages where no pharmacies existed, the project had unexpected, substantial spillover effects, spurring medicines price reductions in pharmacies quite far away

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

Africa's health worker crisis - an interview with Dr Peter Ngatia

AFRICA MEDICAL RESEARCH FOUNDATION (AMREF)
April 2009

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This interview with Dr Peter Ngatia, former faculty head at the Kenya Medical Training Centre, explores the critical lack of health workers of all levels throughout the continent of Africa and its implications. It also discusses programmes that have been set up to train community health workers to help provide at least minimum access to health care providers, particularly for rural communities

A custom distorted : beliefs about sexual abuse involving teenagers with intellectual disability at a rural setting in South Africa

PHASHA, N
MYAKA, Lucy
2009

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This paper is based upon the findings of a study that took place in a rural setting in KwaZulu-Natal, South Africa. It describes the social problem of sexual abuse of teenagers with intellectual disabilities by analyzing the roots of common misconceptions of intellectual disability, which render these teenagers vulnerable to sexual abuse. This paper is useful for anyone interested in learning more about disability and misconceptions of disability in Africa

Closing the gap in a generation : health equity through action on the social determinants of health|Final report of the Commission on the Social Determinants of Health

WORLD HEALTH ORGANIZATION (WHO)
2008

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This is the final report of the World Health Organization’s Commission on the Social Determinants of Health (2005-2008). The report gives three main recommendations: 1 improve daily living conditions 2. Tackle the inequitable distribution of power, money, and resources 3. Measure and understand the problem and assess the impact of action. The Commission was created to provide evidence on policies that improve health by addressing the social conditions in which people live and work. The report is addressed to WHO, national governments, civil society, and other global organizations

Taking critical services to the home : scaling-up home-based maternal and postnatal care, including family planning, through community midwifery in Kenya

MWANGI, Annie
WARREN, Charlotte
2008

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This publication is the report of a project to scale-up a community-based model, in Kenya, that enabled women to give birth safely at home or be referred to a hospital when attended by a self-employed skilled midwife living in the community. The findings of the project were that community midwifery contributed to increasing the proportion of women assisted by skilled attendants during birth in the four districts in which the scheme was trialed, amounting to just under half of all skilled attended births in the districts. Although the skilled birth attendant rate in these districts was well below the national average of 42 percent, there was a steady increase in the proportion of attended deliveries since CMs were introduced in 2005. The districts also reported an increase in postnatal assessments in the first 48 hours and increase in immunization coverage

Teacher absence as a factor in gender inequalities in access to primary schooling in rural Pakistan

GHUMAN, Sharon
LLOYD, Cynthia B.
June 2007

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Public-sector education in many countries in western and southern Asia, including Pakistan, is characterised by separate schools for boys and girls at the primary and secondary levels. In Pakistan, primary school enrolment among girls in rural areas is substantially lower than among children in urban areas and boys in rural areas, owing to lack of access to government girls’ schools. The focus of this report is on teacher absence as a further barrier to schooling for girls. Absence rates among the all-female teachers in government girls’ schools are substantially higher than among the all-male teachers in government boys’ schools. Whether they teach in government or private schools, women who live in the same community as the school are substantially less likely to be absent. In government girls’ schools, better basic amenities are also related to lower teacher absence. Both findings suggest the importance of recent government investments in schools and the higher inter-village travel costs faced by women relative to men

Providing new opportunities to adolescent girls in socially conservative settings : the Ishraq program in rural Upper Egypt

BRADY, Martha
et al
2007

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Out-of-school girls are among the most disadvantaged adolescents in rural Upper Egypt. Compared with girls attending school, they are more likely to be engaged in poorly paid farm work, more likely to be married early, and at greater risk for early childbearing and poor pregnancy outcomes. To respond to their situation, the Ishraq program was designed: a holistic intervention to address the unmet needs of out-of-school adolescent girls. The pilot phase of Ishraq was launched in four rural villages of one of the country's poorest regions through the partnership of Caritas, the Center for Development and Population Activities, the Population Council, and Save the Children. This research report provides data from the baseline and endline surveys conducted during the pilot

A community-based health education programme for bio-environmental control of malaria through folk theatre (Kalajatha) in rural India

GHOSH, Susanta K
et al
December 2006

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Kalajatha is a popular, traditional art form of folk theatre depicting various life processes of a local socio-cultural setting. It is an effective medium of mass communication in the Indian sub-continent especially in rural areas. Using this medium, an operational feasibility health education programme was carried out for malaria control. This study was carried out under the primary health care system involving the local community and various potential partners

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