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Sexual Health of Women with Spinal Cord Injury in Bangladesh

LUBBERS, N P M
NURI, R P
VAN BRAKEL, W H
CORNIELJE, H
2012

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Purpose: To identify factors influencing the sexual health of women with spinal cord injury (SCI) in Bangladesh.

 

Methods: This study used both qualitative and quantitative methods. The quantitative part used a case-control design. Cases were women with SCI and controls were age-matched women without SCI. Questionnaires were used to collect data concerning the sexual health status of women. Multivariate logistic regression was done to determine which factors had an independent effect on sexual health. In-depth interviews were held with a sub-group of women from both groups, and interview guides were used. The in-depth interview data was subjected to content analysis.

 

Results: In total, 92 questionnaires were given out and 30 in-depth interviews were conducted. A relationship was found between physical factors and sexual health, as pain, vaginal dryness and physical discomfort were mentioned more frequently among women with SCI. Environmental and emotional factors such as stigma, satisfaction of the husband and support from the husband and friends had an influence on the sexual health of the women with SCI, as well as the other group of women.

 

Conclusions: From interviews it became clear that most of the women with SCI were dissatisfied with their sexual health as compared to the women without SCI. However, environmental and emotional factors such as attitudes, support and stigma, rather than physical factors, were the most important influences on sexual health in both groups of women.

Assessing Children with Language Impairments: A Study on Kannada, a South Indian Language

CHAKRAVARTHI, S
2012

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Purpose: This is one of the first comprehensive studies to assess receptive and expressive language skills in a South Indian language, Kannada. It demystifies language impairments and provides a model for future research to understand other languages in India and in countries around the world.

 

Method: Language impairments were identified in 68 students of Grades 3 and 4, in elementary schools where Kannada was the medium of instruction. The children were assessed in different language components. The results were analysed in terms of their ages and their levels of functioning in each language component and sub-component.

 

Results: As a group, the children showed no significant deficits in phonological and semantic skills; however, individual deficits and deficits within sub-component skills of semantics were noted. Mean and individual deficits in auditory reception, aural comprehension and receptive vocabulary were also noted. Deficits in syntax & verbal expression were notably significant. The extent of language delay increases with age, and plateaus at higher ages.

 

Conclusion: Children with language impairments in Kannada, display many similar characteristics in terms of problems in different components of language. Early intervention is called for because the language delay increases as age advances. A thorough assessment reveals specific strengths and weaknesses in language components and skills. This can be used as a starting point to base remediation activities.

The implementation of inclusive education in South Africa: Reflections arising from a workshop for teachers and therapists to introduce Universal Design for Learning

DALTON, Elizabeth M
MCKENZIE, Judith A
KAHONDE Callista
2012

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South Africa has adopted an inclusive education policy in order to address barriers to learning in the education system. However, the implementation of this policy is hampered by the lack of teachers’ skills and knowledge in differentiating the curriculum to address a wide range of learning needs. In this paper we provided a background to inclusive education policy in South Africa and a brief exposition of an instructional design approach, Universal Design for Learning (UDL) that addresses a wide range of learning needs in a single classroom. We reported on a workshop conducted with teachers and therapists in South Africa as a first attempt to introduce UDL in this context. Knowledge of UDL was judged to be appropriate and useful by the course participants in the South African context as a strategy for curriculum differentiation in inclusive classrooms. Furthermore, knowledge of the UDL framework facilitates dialogue between teachers and therapists and provides a relatively simple and comprehensive approach for curriculum differentiation. We therefore conclude that there is potential for this approach that can be expanded through further teacher training.

Sterilisation and intellectually disabled people in New Zealand—still on the agenda?

HAMILTON, C
2012

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Support through care and protection within a medical framework, rather than through the idea of independence within the least restrictive environment, continues to guide service provision for intellectually disabled people in the sexuality area. Past practices have included use of involuntary sterilisation. This article outlines the outcome of a search for information undertaken because of concerns that use of sterilisation-related procedures may remain embedded in contemporary approaches to sexuality support management. Verified instances of hysterectomy carried out between 1991 and 2001 were uncovered. Documents tabled at a Parliamentary Select Committee in 2003 expressing concerns about use in relation to young disabled girls were also found. Requests for sterilisation-related procedures exemplify how the right of all vulnerable citizens to full bodily integrity is currently adjudicated in New Zealand. It is suggested that further research is needed to pinpoint and address the underlying social customs through which requests for such procedures are negotiated and resolved.

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

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

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

 

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

 

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

 

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

 

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

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.

Parental Stress in Raising a Child with Disabilities in India

GUPTA, V B
MEHROTRA, P
MEHROTRA, N
2012

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Purpose: To determine parenting stress and its determinants among parents of children with disabling conditions in India.

 

Methods: The Parenting Stress Index – short form and a few open ended questions were administered to a convenience sample of sixty-six patient families in July, 2009 in the cities of New Delhi and Faridabad regions of Northern India through six non- governmental organizations (NGOs) that serve children with disabling conditions.

 

Results: Female sex of the child was associated with higher stress related to failure of the child to meet parent’s expectations and to satisfy the parents in their parenting role. Parents engaged in more lucrative and prestigious occupations had more stress than parents engaged in less prestigious and lucrative occupations irrespective of their income. Many parents reported receiving little support from their extended families in taking care of their child. Religion was found to be a common coping resource used by the parents.

 

Conclusion and Implications: Higher parenting stress in parents of girls raises the possibility of abuse and neglect. Little support from informal family resources underscores the need for developing formal resources for supporting the parents. The specific resources of parenting stress among parents of different socioeconomic status should be explored in future studies so that appropriate interventions can be planned.

Designed to deter: Barriers to facilities at secondary schools in Ghana

DANSO, Anthony K
OWUSU-ANSAH, Frances E
ALORWU, Divine
2012

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Background: There are varied and complex problems associated with the admission of students with disabilities into secondary (senior high) schools all over the world. This situation is further complicated by difficulties encountered in the built environment of these institutions and, in this, Ghana is no exception.

 

Objectives: This exploratory study investigated the level of accessibility of the built environment in secondary schools in eight out of the ten regions of Ghana, in order to determine whether they conform to guidelines provided in international building standards and also assess the extent to which they have been designed and constructed to meet the provisions of the Persons with Disability Act 2006, which allows for equal access to public buildings in Ghana.

 

Method: In total, 705 building elements in 264 facilities were surveyed using international standards, building codes, regulations and guidelines. These facilities included car parks, classrooms, dormitories, assembly halls, telephone booths and administration blocks.

 

Results: Our findings revealed that most of the building elements were barring and not disability-friendly. Just to name a few: there were obstructions on access routes to and around buildings, absence of designated car parks, unfriendly vertical and horizontal means of circulation in buildings and lack of accessible sanitary accommodations. In addition, the general lighting and signage were poor. As a result, very few students with disabilities are admitted and retained in these schools.

 

Conclusion: Mainstreaming of people with disabilities into the Ghanaian educational system remains impossible unless urgent action is taken to alter the facilities at secondary schools. Based on this research outcome, recommendations have been made to the Ghanaian government and the Ghana Education Service, as well as non-governmental organisations and relevant professional bodies for the amelioration of the present situation in our secondary schools.

 

The Role of Community Health Workers in the Mongolian CBR Programme

COMO, E
BATDULAM, T
2012

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Purpose: This article aims to present the role of community health workers in the implementation of a comprehensive CBR Programme in rural Mongolia, and to explore the main challenges that arise in this specific geographical and socio-economic context.

 

Methods: Qualitative data were collected through semi-structured interviews with CBR workers from three selected provinces; short meetings and interviews with respective provincial level CBR coordinators complemented the information acquired. Additionally, a workshop with national level CBR stakeholders was carried out in order to review and discuss the findings.

 

Results: The study highlighted a number of practical barriers (including long distances and lack of transportation, low population density, and harsh climate conditions) which constrain the work of community health workers in the areas studied. In relation to disability, the study shed light on the difficulties found by community workers in shifting from a medical approach to disability to a new approach that emphasizes prevention and rehabilitation. Exploring interviewees’ experience in the five areas of CBR (health, education, livelihood, social, empowerment) the authors found that working in the areas other than health is perceived as difficult due to insufficient training as well as objective contextual barriers.

 

Conclusions: Despite many challenges, CBR represents a significant improvement for disability action in rural Mongolia. In this context, the local community health workers are well suited and willing to act as CBR workers; nonetheless, more training and some tailoring work to adapt the Programme to the context is needed if all potential results are to be achieved.

 

Limitations: This study did not include direct observation of CBR activities or consultation of beneficiaries and other stakeholders. Their involvement and consultation would certainly improve the understanding of all the issues raised.

Lady Health Workers (LHWs) as Flag Bearers for Children with Disabilities in Pakistan

LASI, S Z
QAYYUM, A
RAFIQUE, G
2012

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Purpose: This study explores the perceptions, knowledge and attitudes of LHWs towards children with disabilities in Pakistan. It considers the feasibility of utilising the LHWs for prevention, early identification and management of disabilities for these children in the community.

 

Methods: Two Focus Group Discussions (FGDs) were conducted with 15 Lady Health Workers (LHWs), and two In Depth Interviews (IDIs) with LHWs of both a semi-urban and a rural community of Pakistan.

 

Results: LHWs were found to have major concerns and strong emotions regarding children with disabilities. They also revealed the insensitive attitude of community members towards these children. While they understood the major types and magnitude of disabilities better than lay persons, they lacked the knowledge to manage these disabilities. Consanguineous marriages were identified as the main cause of disabilities. LHWs reported that education and health facilities were lacking in semi-urban and rural areas, and demanded that the government provide these facilities for the children. They also expressed their willingness to work for these children, provided they had the approval of higher authorities and were given proper training.

 

Conclusions: This qualitative exploratory study recommends that the existing primary health system be reviewed, and the possibility of introducing community based rehabilitation services, utilising LHWs’ services for children with disabilities, be examined. In this regard, it is imperative to assess the existing training modules of LHWs and to introduce modules on prevention, early identification, and management of children with disabilities. It is also necessary to employ mass media to spread awareness about persons with disabilities.

A Low-intensity Approach for Early Intervention and Detection of Childhood Disability in Central Java: Long-term Findings and Implications for “Inclusive Development”

KUIPERS, P
MARATMO, J
2012

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Purpose: This paper describes a qualitative follow-up study, conducted eight years after completion of a low-intensity early intervention and detection of childhood disability project in Central Java, Indonesia. The original project sought to increase the level of skills and engagement of existing community health volunteers, for the support of children with disabilities. This follow- up study explored long-term outcomes and implications for the inclusive development approach.

 

Method: Semi-structured interviews were conducted with 18 of the original volunteers. Interview notes were translated and thematically categorised.

 

Results: While the study was qualitative and descriptive, results indicate that despite the low intensity of the project, some early detection and prevention activities were still going on eight years later.

 

Conclusions: The study suggests that a low-intensity initiative such as this, which is closely aligned with the goals of a government department, may indeed achieve some ongoing change by extending the focus of the department towardsdisability-related concerns.

 

Implications: Implications are drawn for the emerging area of “inclusive development”, which similarly seeks to promote change in mainstream services for the benefit of people with disabilities.

The Community Based Rehabilitation Programme of the University of the Philippines Manila, College of Allied Medical Professions

MAGALLONA, M L M
DATANGEL, J P
2012

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Purpose: This paper reports the process of development of a CBR programme by UP Manila College of Allied Medical Professions, and its impact on the stakeholders: persons with disabilities, students and alumni, CBR workers, local leaders and the agencies involved in the programme.

 

Method: The impact of the programme was assessed through interviews, questionnaires, focus group discussions and review of secondary data and records.

 

Results: The programme results show that the condition of persons with disabilities has improved and there has been a remarkable change in their knowledge, attitudes and skills. The positive attitudes, skills and values of students were enhanced, and the CBR programme was a “character builder” for them as rehabilitation professionals. The CBR workers who participated in the programme learnt to appreciate the potential of persons with disabilities and to accept their limitations. Another key result was the pledge by local leaders to sustain CBR in their own villages.

 

Conclusions: The students and alumni reported that the CBR programme should be replicated for nation-building. The different stakeholders reported that it helped improve the quality of life of people with disabilities and contributed to community development.

Complexities in the Provision of Respite Care to Family Carers of Persons with Intellectual Disabilities

MANNAN, H
O'BRIEN, P
MCCONKEY, R
FINLAY, F
LAWLOR, A
HARRINGTON, G
2011

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Purpose: Respite care is generally thought to benefit family carers of persons with intellectual disabilities and is regarded as an important component of family-centred services. However, the complexities associated with the provision of such services, from the carer’s perspective, have been rarely investigated.

 

Method: This qualitative research study was carried out through a participatory action research process that involved collaboration among researchers and family members as co-researchers. Seven focus groups, involving seventy family carers (fifty mothers, fifteen fathers and five sisters), were held in seven locations across the Republic of Ireland.

 

Results: Three main themes dominated the discussions. The first theme related to the ambivalence of carers towards using respite services, as expressed in their reluctance to relinquish care-giving for even a short period; the feelings of guilt they experienced; and the greater needs of other carers. The second theme related to the benefits of respite breaks, but these were solely with respect to the carer and other family members, rather than to the person with an intellectual disability. The third theme regarding the quality of provision was dominated by concerns for the care the person received in using the services.

 

Conclusions: Respite care has the potential to make a difference, and these findings call for building much- needed alliances between all members of the family and professionals. This is in order to support one another through the difficulties associated with the redesign of existing respite provision, and the extension of these services to the growing number of carers who require respite breaks.

Assistive Technologies in a Workplace Environment: Barriers for the Employment of People with Disabilities

JAKOVLJEVIC, M
BUCKLEY, S
2011

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Purpose: The employment equity policies and implementation of technology- specific guidelines within the South African ‘Code of Good Practice on the Employment of People with Disabilities’, was created to encourage employment equity for employees with disabilities, by companies in Johannesburg.

 

This study reports on the results of the investigation in assistive technologies in a workplace environment, and barriers for the employment of persons with disabilities in the South African environment.

 

Method: Qualitative data, collected from two retail and service companies in the form of semi-structured individual and focus group interviews, was analysed using a constant comparative method, identifying major themes and sub-themes.

 

Results: A surprisingly small number of persons with disabilities were found to be employed by participating companies, which tended not to focus on these people when formulating their policies and plans. In addition, technological aspects of the Code were largely unacknowledged, with little effort being made to accommodate the needs of persons with disabilities. An even lower incidence of assistive technology usage was found, along with a large number of conceptual and perceived barriers that hinder the employment of persons with disabilities and the implementation of appropriate technology.

Rehabilitation Services for Persons Affected by Stroke in Jordan

AL-ORAIBI, S
DAWSON, V L
BALLOCH, S
MOORE, A P
2011

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The purpose of this study was to explore the perceptions stroke survivors have of the rehabilitation services received by them in the Jordanian community. A secondary aim was to explore the impact of culture on providing appropriate services for stroke survivors.

 

Eighteen stroke survivors were recruited from an outpatient stroke rehabilitation programme. All 18 participants had been discharged from hospital for between one and six months. Semi-structured interviews were performed, either in thephysiotherapy outpatient clinic where the affected person was attending a clinic or in their homes. Transcription of interviews carried out in Arabic and thematic analysis was also carried out in that language by transcribers who were fluent in Arabic and English, using a back-translation method. Necessary measures were taken to ensure the accuracy, reliability and validity of the data collection and analysis.

 

Following thematic analysis, themes arising out of the data included physiotherapy and occupational therapy support in the community, out-patient rehabilitation clinic services, community clinic services and support from families, friends and neighbours. Participants expressed satisfaction with their therapists, but there were large areas of unmet rehabilitation need for stroke survivors in the Jordanian community such as a limited availability of occupational therapy services, insufficient amount of therapy services and poor medical support.

 

This study presents a unique contribution to knowledge relating to the experiences of stroke survivors in a developing country, and also shows how care systems are very dependent on cultural contexts, cultural beliefs and practices.

Practical lessons from four projects on disability-inclusive development programming

COE, Sue
WAPLING, Lorraine
2010

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This article considers early lessons learned from the inclusion of disabled people, based on socially inclusive principles, in World Vision programming work in Angola, Armenia, Cambodia, and Senegal. Externally led reviews and evaluations conducted between July 2007 and April 2008 drew out seven key lessons. In summary: the substantial effect of stakeholders’ attitudes on practical implementation; the importance of authentic consultation with a range of disabled people; appropriate budgetary considerations; and a need for caution regarding livelihoods work.

On the outskirts of normality: Young adults with disabilities, their belonging and strategies

OLIN, Elisabeth
JANSSON, Bibbi Ringsby
2009

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During the last decades, the living conditions for young people with disabilities have changed dramatically in Sweden, as well as in other parts of theWestern world.The boundaries between what is considered normal as opposed to different have become less clear as a result of these changes. This has been followed by new problems regarding integration and changing patterns of marginalization. The aim of this study was to gain a deeper understanding of the ways in which young adults’ social identity is shaped by their dual belongings: to the category of individuals with disabilities as well as to mainstream society. In- depth interviews were carried out with 15 young adults with mental disabilities and mild intellectual disabilities occasionally combined with various forms of social problems. The analysis focused on the ways in which the young adults related to what they describe as normal and different as well as their strategies for navigating between them. The data was subsequently divided into three categories: Pragmatic Navigators, Critical Challengers, and Misunderstood Rebels, which reflect the ways in which the respondents describe themselves and the perspective they have developed to manage their existence.

Children with learning disabilities: A phenomenological study of the lived experiences of Iranian mothers

KERMANSHAHI, S M
VANAKI, Z
AHMADI, F
KAZEMNEJAD, A
AZADFALAH, P
2009

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Nursing as a family-oriented profession involves supporting mothers of children with learning disabilities to gain an awareness of their role. However, few studies have explored the whole experience of such mothers. This study embarks on an understanding of lived experiences of Iranian mothers who have children with learning disabilities. A qualitative approach was adopted using the phenomenology of semi-structured interviews carried out with six Iranian mothers whose children attended a special school in Tehran. The data were analysed in line with van Manen’s suggestions. Two main themes were abstracted; being the centre of stress circles and being in the midst of life and death. Themes include care management challenges for self and child, experiencing through helplessness and hopefulness and experiencing self devote and self neglect. Overall, a majority of mothers experienced a stressful life. The study concludes that Iranian mothers’ lived experience of having children with learning disabilities can be likened to the constant swing of a pendulum between two polarities of positive and negative feelings. This knowledge can provide an heuristic to help health staff guide mothers in adjusting to their children who have learning disabilities.

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