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Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia

PETERS, R. M. H
HOFKER, M. E
VAN BRAKEL, W H
ZWEEKHORST, M B M
SEDA, F S S E
IRWANTO, I
BUNDERS, J F G
2014

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Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their ‘agency’. The aim is to provide recommendations for stigma-reduction interventions.

 

Methods: The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.

 

Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of ‘disclosure’ were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others. 

 

Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

Exploring a Model of Effectual Learning for a Student Speech Pathology Placement at a Community-Based Rehabilitation (CBR) Centre in Malaysia

VAN DORT, S
WILSON, L
COYLE, J
2014

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Purpose: Speech-language pathologists in Malaysia typically do not work within CBR. Therefore, exploring the use of services through a non-traditional student placement was a crucial first step in understanding how to develop capacity for such services. It was also important to develop an understanding of the ways in which the implementation of this student placement influenced learning in the context of a Malaysian CBR programme.

 

Method: An action research study was designed to implement and evaluate student speech-language pathology (SLP) placement within a Malaysian community-based rehabilitation (CBR) centre for children with communication disabilities. Data collection involved the learning experiences of key adult stakeholders (students, workers, parents, and the principal research investigator (PI) or lead author).

 

Results: Study findings indicated that all adult learners became better empowered by working together. Workers involved in impairment-focussed rehabilitation activities grew in understanding and skills when supported by relevant professionals.The importance of mentoring as a learning-teaching relationship was demonstrated.

 

Conclusion: While the study has indicated that the setting is beneficial as a student placement, the development of a specialisation in CBR for allied health professionals would be a relevant way forward in the Malaysian context.

Community Mobilisation in a CBR Programme in a Rural Area of Sri Lanka

HIGASHIDA, M
2014

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Purpose: This article examines community mobilisation in a model administrative division of the national community-based rehabilitation (CBR) programme in Sri Lanka.

 

Method: After comprehensively analysing local human resources related to the CBR programme at the study site, the focus of the study was on volunteers (n = 17), youth club members (n = 7), and local government officers from multiplesectors (n = 33). A semi-structured interview, focus group discussion and case information provided data, which was collected through social work practice in line with a previously developed one-year action plan. Narrative data was analysed using a qualitative procedure.

 

Results: The findings suggest that the local supporters, including people with disability, made a positive contribution to the CBR programme, and felt satisfied with the activities. Although the local resources and opportunities for people with disability are limited, the analysis points to the importance of coordination, attitudes, and mutual support rituals by villagers, in promoting community mobilisation.

 

Conclusions: Although it is an exploratory study with a limited sample of stakeholders at one study site in Sri Lanka, the study contributes to a growing body of literature that suggests the significance of community mobilisation in CBR. Future studies could explore some of the issues identified here, such as promotion of community-based inclusive development (CBID). However, since a limited sample of stakeholders was involved, findings can be generalised only to a similar context and setting.

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.

Assessing Parental Role as Resource Persons in Achieving Goals of Early Detection and Intervention for Children with Hearing Impairment

ANSARI, M S
2014

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Early detection and intervention for any degree of hearing loss is critical to the linguistic, social and educational development of children with auditory deficit. Since parents and family members are in a position to identify hearing loss at an early stage, they can play a vital role in achieving the goals of early identification and intervention for their children.

 

Purpose: This study was conducted to determine the age at which parents and significant others begin to suspect hearing impairmentin their children, and to advocate for using them as resource persons in the early detection of hearing loss.

 

Method: Parents of children with hearing impairment were retrospectively surveyed and interviewed to determine the age at which suspicion, diagnosis, fitting of amplification and initiation of interventions occurred.

 

Results: Interviews revealed the average age to be 16.5, 24.3, 31.7 and 33.4 months, for suspicion, diagnosis, fitting of amplification and initiation of early intervention for hearing loss respectively. The obtained age of suspicion is lower than the age of identification of hearing loss reported in Indian literature. The current study found delays in diagnosis and fitting of amplification, both of which are essential to initiate early remedial programmes which facilitate development of speech and language skills in children with hearing impairment. Surprisingly, it was found that these delays were caused by professional failures.

 

Conclusion: It is emphasised that parents are in the best position to detect hearing problems in their children, and can be effectively utilised as manpower/ equal partners in achieving the goal of early identification of hearing loss. The study outlines appropriate ways and means to facilitate early identification and provide effective intervention for children with hearing impairment.

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.

A Transect Walk to Establish Opportunities and Challenges for Youth with Disabilities in Winterveldt, South Africa

LORENZO, T
MOTAU, J
2014

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Winterveldt was one of the 9 sites included in a national study to determine the livelihood strategies of youth with disabilities, undertaken by the Occupational Therapy Departments of 6 Universities in South Africa. Community-based rehabilitation (CBR) programmes were initiated in Winterveldt in the 1990s by non-governmental organisations and the Occupational Therapy Department at the University of Limpopo - Medical University of South Africa (MEDUNSA).

 

Purpose: This paper describes the use of a Transect Walk to identify aspects of context that contribute to the vulnerability of youth with disabilities with regard to their livelihood strategies.

 

Method: Transect Walk was employed as a participatory rapid-appraisal tool to gather data. Convenience sampling was used to identify 11 participants, including three youth with disabilities. Field notes and observations were analysed deductively for themes related to the 5 categories of livelihood assets.

 

Results: The findings describe the natural and built environment, the access to health, educational and financial services, and the social attitudes of people in this community towards youth with disabilities. The discussion uses the 5 CBR components as a framework to explore strategies for enhancing the assets of youth with disabilities, namely, empowerment, social, health, education, and livelihood.

 

Conclusions: There is significant development that could be maximised if youth with disabilities were aware of their rights and were able to access services and resources. The implication for local government is to create an inclusive environment in which youth with disabilities are able to participate in mainstream youth development opportunities.

Characteristics and Quality of Life Among People Living with HIV at Drop-in Centres and Shelter Homes in Malaysia

SIAH, P C
TAN, J H
2014

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Purpose: The aim of the study was to examine whether there are any significant differences in demographic characteristics and health-related Quality of Life (QoL) among people living with HIV (PLWH) at shelter homes and drop-in centres in Malaysia.

 

Method: 117 PLWH were recruited by using the purposive sampling method. Data were collected through a questionnaire survey.

 

Results: Significant differences were found between PLWH at shelter homes and drop-in centres, in their demographic characteristics and in the 3 factors in the HIV/AIDS-Targeted Quality of Life Instruments (HAT-QoL) – namely, overall function, health worries, and provider trust.

 

Conclusion: Due to the differences in characteristics and QoL among PLWH in these two settings, different approaches are suggested to assist PLWH from shelter homes and drop-in centres.

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.

Perceptions of psychosocial disability amongst psychiatric service users and caregivers in South Africa

BROOKE-SUMNER, Carrie
LUND, Crick
PETERSEN, Inge
2014

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Background: In many parts of South Africa there is little support for people with psychosocial disability caused by schizophrenia, beyond provision of psychotropic medications. Appropriate community-based psychosocial rehabilitation interventions are a crucial element of mental health service development.

 

Objectives: This study aimed to use an explanatory model of illness framework to document experiences of illness, disability and recovery amongst service users with schizophrenia and their caregivers in a poorly resourced area in the North West Province. Data were used to provide recommendations for a contextually appropriate non-specialist facilitated group psychosocial rehabilitation intervention.

 

Method: Eighteen in-depth individual interviews were conducted: nine with schizophrenia service users and nine with caregivers. Interviews were conducted by two trained field researchers; both clinical psychologists fluent in the first language of participants. All interviews were recorded, translated and transcribed. Data were thematically analysed using NVivo 9.

 

Results: Participants linked the illness to witchcraft, poverty and stress. Family conflict was recognised in the course of the illness, causing stress and challenges for emotional well-being. Knowledge of diagnosis and biomedical treatment was minimal. Key factors recognised by service users as promoting recovery were the ability to work, and the support of traditional healers and religious structures.

 

Conclusion: Based on the findings of this study, a group psychosocial rehabilitation intervention emerged as a recommendation, with the incorporation of psycho-education, adherence support, coping skills, and opportunities for income generation and productive activity. The importance of also enlisting the support of religious leaders and traditional healers in supporting recovery is emphasised.

Accessibility for persons with mobility impairments within an informal trading site: A case study on the markets of Warwick, South Africa

NAIDOO, Pragashnie
KOCH, Helga E
ANDERSON, Jassmine
GHELA, Prashika
GOVENDER, Perusha
HOOSEN, Nausheena
KHAN, Halima
2014

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Background: There are a number of informal trading sites across cities in sub-Saharan Africa,of which the markets of Warwick is one example. Since the informal economy is an important contributor to a city’s economy as well as a source of employment, it is important for these sites to be accessible for all persons. Whilst the South African government has put structures in place to identify and remove environmental barriers in order to meet the individual needs of persons with mobility impairments and improve their quality of life, persons with mobility impairments still face barriers and restricting environments that prevent them from participating in society and its social and economic activities.

 

Objectives: This case study aimed at exploring accessibility within the markets of Warwick for persons with mobility impairments by an ergonomic assessment, augmented by voices of participants within the market.

 

Method: A qualitative, instrumental, single case study design was utilised with purposive sampling of the markets of Warwick as the study setting. Multiple sources of data were gathered, such as semi-structured interviews, direct observations of an environmental survey supported by photographs, and the authors’ review of relevant documents. Transcriptions were analysed using NVivo 10 software programme with inductive coding.

 

Results: Whilst policies have been in place since 1996 to adjust infrastructure, the markets of Warwick still remain inaccessible to persons with mobility impairments and do not meet the standardised infrastructural design.

 

Conclusion: The findings of this study may offer a significant understanding of the complexity of accessibility within an informal trading site and create an awareness of the limitations this has for persons with mobility impairments. Additionally, these findings may assist in effecting a positive change in terms of the infrastructure of the Markets and in continuous advocating for the rights of persons with all disabilities.

The impact of an online Facebook support group for people with multiple sclerosis on non-active users

STEADMAN, Jacqui
PRETORIUS, Chrisma
2014

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Background: Multiple sclerosis (MS) is a debilitating disease and there is little research on support networks for people with MS (PwMS). More specifically, most studies on online support groups focus on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way.

 

Objectives: This study therefore aimed to explore the experiences of non-active users of an online Facebook support group for PwMS. Emphasis was placed on the facilitators and the barriers that were associated with membership to this group.

 

Method: An exploratory qualitative research design was implemented, whereby thematic analysis was utilised to examine the ten semi-structured interviews that were conducted.

 

Results: Several facilitators were acquired through the online support group; namely emotional support (constant source of support, exposure to negative aspects of the disease),informational support (group as a source of knowledge, quality of information) and social companionship (place of belonging). Some barriers were also identified; namely emotional support (emotions lost online, response to messages, exposure to negative aspects of the disease), informational support (information posted on the group, misuse of group) and social companionship (non-active status).

 

Conclusion: These findings demonstrate that the non-active members of the online support group for PwMS have valid reasons for their non-active membership status. More important,the findings suggest that the online Facebook support group provided the group members with an important support network in the form of emotional support, informational support and social companionship, despite their non-active membership status or the barriers that have been identified.

A qualitative study: Barriers and support for participation for children with disabilities

MARIE, Anne
HANSEN, Witchger
SIAME, Musonde
VAN DER VEEN, Judith
2014

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Background: This qualitative–exploratory study examined the barriers to participation amongst children with disabilities in Lusaka, Zambia, from the mothers’ perspective.

 

Objectives: The objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (CBR) services in Lusaka, Zambia, perceived and described (1) the level of support they received and the barriers they encountered in terms of their child’s meaningful social participation; (2) the use and awareness of these barriers to identify and pursue advocacy strategies; and (3) hopes for their child’s future.

 

Methods: Data were collected through semi-structured interviews with each mother in her home.Results: Findings revealed both support and barriers to the child’s social participation in relationship to their family, friends and community. Support also came from the CBR programme and mothers’ personal resourcefulness. Mothers identified their child’s school,their immediate environment and financial burdens as barriers to participation as well as their own personal insecurities and fears. Strategies to overcome barriers included internal and external actions. The mothers involved in the study hope their child’s abilities will improve with continued CBR services. Some mothers described a bleak future for their child due to alack of acceptance and access to education.

 

Conclusion: The findings of this study suggest the significant role the mother of a child with a disability plays in her child’s social participation. Recommendations include enhancing CBR programming for families, especially for mothers, and advocating on behalf of children with disabilities and their families to attract the attention of policy makers.

Inheritance, poverty, and disability

GROCE, Nora Ellen
LONDON, Jillian
STEIN, Michael Ashley
2014

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Inheritance is a significant means of transferring wealth from one generation to the next, and therefore increasingly attracts attention from researchers and pol- icy-makers working on intergenerational and multidimensional poverty. How- ever, until now disabled persons have been overlooked in these discussions. This oversight is particularly unfortunate because, as a group, the estimated one bil- lion people with disabilities (some 15% of the world’s population) are among the poorest and most marginalized of the global population. Over the past dec- ade, a small but growing literature has examined the recursive connections between poverty and disability throughout the developing world. In this paper, we argue that disabled individuals are routinely denied inheritance rights in many low-income and middle-income countries, and that this is a significant and largely unrecognized contributor to their indigence. The denial of inheritance is both a social justice issue and a practice that can no longer be overlooked if disabled persons are to be brought into the development mainstream.

An examination of violence practiced against disabled Brazilians in relation to sustainable development

KIRAKOSYAN, Lyusyena
October 2014

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Although there are no national data and statistics regarding violence against disabled citizens in Brazil, findings from a number of small-scale research studies suggest that it is a problem of considerable magnitude. This article draws on the existing literature on violence and oppression, empirical studies on violence against disabled people in Brazil and interviews with a sample of disabled Brazilians to argue that the most prevalent forms of violence in the nation are subtle and concealed forms of oppression that reproduce discriminatory power structures in Brazilian society. Such power structures prevent the developing world in general and Brazil in particular from securing democratic and sustainable development in the post-2015 era, when disadvantaged people must be at the center. The analysis is organized in three parts. First, I outline briefly the main issues in defining impairment, disability and violence, since these represent political choices that shape policy decisions. Second, I analyze the forms of violence that affect disabled Brazilians and the relationships and institutions that create and sustain them. Third, I describe and evaluate the government's key current strategies aimed at addressing violence against disabled Brazilians. The purpose here is to suggest ways in which violence against disabled Brazilians can be addressed in public policies as a sustainable development issue and thus help close the "gap" between disabled and nondisabled populations to create truly sustainable democratic societies that honor human dignity.

The African disability scooter: efficiency testing in paediatric amputees in Malawi

BECKLES, Verona
MCCAHILL, Jennifer L
STEBBINS, Julie
MKANDAWIRE, Nyengo
CHURCH, John C T
LAVY, Chris
2014

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Purpose:

The African Disability Scooter (ADS) was developed for lower limb amputees, to improve mobility and provide access to different terrains. The aim of this study was to test the efficiency of the ADS in Africa over different terrains.

 

Method: 

Eight subjects with a mean age of 12 years participated. Energy expenditure and speed were calculated over different terrains using the ADS, a prosthetic limb, and crutches. Repeated testing was completed on different days to assess learning effect. 

 

Results:

Speed was significantly faster with the ADS on a level surface compared to crutch walking. This difference was maintained when using the scooter on rough terrain. Oxygen cost was halved with the scooter on level ground compared to crutch walking. There were no significant differences in oxygen consumption or heart rate. There were significant differences in oxygen cost and speed between days using the scooter over level ground, suggesting the presence of a learning effect. 

 

Conclusions:

This study demonstrates that the ADS is faster and more energy efficient than crutch walking in young individuals with amputations, and should be considered as an alternative to a prosthesis where this is not available. The presence of a learning effect suggests supervision and training is required when the scooter is first issued.

What has worked for Bringing Out-of-school Children with Disabilities into Regular Schools? A Literature Review

SHARMA, U
NG, O
2014

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Purpose: A literature review was undertaken to determine (a) what is currently being done to bring out-of-school children into schools and retain them there; (b) what has succeeded in bringing out-of-school children into schools and retaining them;and (c) what is being done to bring out-of-school children with disabilities into schools?

 

Methods: Various databases were searched to identify relevant articles for the review. Only articles published after the year 2000 were included in the analysis.

 

Results: A total of 23 articles were reviewed. The review identified economical, socio-cultural and school-related variables that contribute to children being excluded from schooling. Various strategies that have worked to bring out-of-school children into schools include alternative education, rebates and incentives, and community awareness programmes.

 

Conclusions and Implications: The review found that there is insufficient research on out-of-school children with disabilities. However, research on the population of children without disabilities has implications that can be relevant to children with disabilities.

Surviving spinal cord injury in low income countries

ØDERUD, Tone
2014

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Background: Mortality rates from injuries are higher for people from poorer economic backgrounds than those with higher incomes (according to the World Health Organization [WHO]), and health care professionals and organisations dealing with people with disabilities experience that individuals with spinal cord injury (SCI) in low income countries face serious challenges in their daily lives.

 

Objectives: The aims of this study were to explore life expectancy (life expectancy is the average remaining years of life of an individual) and the situation of persons living with SCI in low income settings.

 

Method: Literature studies and qualitative methods were used. Qualitative data was collected through semi-structured interviews with 23 informants from four study sites in Zimbabwe representing persons with SCI, their relatives and rehabilitation professionals.

 

Results: There are few publications available about life expectancy and the daily life of persons with SCI in low income countries. Those few publications identified and the study findings confirm that individuals with SCI are experiencing a high occurrence of pressure sores and urinary tract infections leading to unnecessary suffering, often causing premature death. Pain and depression are frequently reported and stigma and negative attitudes are experienced in society. Lack of appropriate wheelchairs and services, limited knowledge about SCI amongst health care staff, limited access to health care and rehabilitation services, loss of employment and lack of financial resources worsen the daily challenges.

 

Conclusion: The study indicates that life expectancy for individuals with SCI in low income settings is shorter than for the average population and also with respect to individuals with SCI in high income countries. Poverty worsened the situation for individuals with SCI, creating barriers that increase the risk of contracting harmful pressure sores and infections leading to premature death. Further explorations on mortality and how individuals with SCI and their families in low income settings are coping in their daily life are required to provide comprehensive evidences.

The profile of disability grant applicants in Bishop Lavis, Cape Town

GOVENDER, T
MJI, G
2014

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Background: Disability grants in South Africa increased from 600 000 in 2000 to almost 1.3 million in 2004. This rise can be attributed to the HIV/ AIDS epidemic, South Africa’s high rate of unemployment and possibly an increased awareness of constitutional rights. The Western Cape, which has a disability prevalence of 3.8%, has also experienced an influx of applications. The study was conducted at Bishop Lavis Community Health Centre (BLCHC) in the Cape Town Metropole, Western Cape.

 

The primary aim of this study was to establish the profile of adults applying for disability grants at Bishop Lavis. The secondary aim was the determination of the degree of activity limitation and participation restriction by means of the International Classification of Functioning, Disability and Health (ICF) shortlist of activity and participation domains.

 

Methods: A descriptive study was conducted with emphasis on identifying and quantifying the relevant factors. The population studied included all prospective adult (18–59-year-old females and 18–64-year-old males) disability grant applicants in Bishop Lavis over a two-month period (April–May 2007). A structured, self-compiled questionnaire was administered during face-to-face interviews with applicants. The questionnaire included the demographic details of the applicants, disability/chronic illness/condition, educational level and social/living conditions. The second part of the questionnaire was based on the ICF shortlist of activity and participation.

 

Results: There were 69 respondents over the period of data collection. Of the 69 applicants who participated in the study, 45 (65%) received a temporary disability grant, 6 (8%) received a permanent grant and 18 (26%) applications were rejected. The results demonstrated that most applicants were females over the age of 50, were poorly educated with chronic medical conditions and were living in formal accommodation with good basic services but with minimal or no disposable income. The ICF questionnaire responses showed that the majority of respondents had no difficulty in most domains, except for the general tasks and demands (multiple tasks), mobility (lifting and carrying, fine hand use and walking) and domestic tasks domains, which showed high percentages of severe to complete difficulty. However, further statistical analysis showed no association between degree of difficulty in the above domains and eventual outcome of type of grant received.

 

Conclusions: This study confirmed that unemployment and a lack of income are the factors influencing patients to seek assistance in the form of disability grants. Most applicants had a chronic medical condition and reported functional restrictions but only received a temporary grant. This may be an indication that most patients require further evaluation before a final decision can be made. There is a need for a standardised, objective assessment tool for disability grant applications. A campaign to educate patients about disability grants could save patients and hospital medical services time and money.

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