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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.

Development process in Africa: Poverty, politics and indigenous knowledge

EIDE, Arne H
KHUPE, Watson
MANNAN, Hasheem
2014

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Background: Persons with disability run the danger of not profiting from the development process due to exclusion from basic services and opportunities. Still, the knowledge base on exclusion mechanisms is relatively weak and there is a danger that important aspects are not addressed as they are hidden behind established understandings that are not critically scrutinised.

 

Objectives: The main purpose of this article was to highlight critical thoughts on prevailing knowledge of the relationship between disability and poverty, the policy base for addressing the rights of persons with disability, and culture as a key component in continued discrimination.

 

Method: This article aimed at integrating three papers on the above topics presented at the 2011 African Network for Evidence-to-Action on Disability (AfriNEAD) Symposium. The researchers have therefore thoroughly examined and questioned the relationship between disability and poverty, the influence of policy on action, and the role of culture in reproducing injustice.

 

Results: The article firstly claims that there are limitations in current data collection practice with regards to analysing the relationship between poverty and disability. Secondly, ambitions regarding inclusion of persons with disability in policy processes as well as in implementation of policies are not necessarily implemented in an optimal way. Thirdly, negative aspects of culture in discrimination and bad treatment of disabled need to be highlighted to balance the discussion on disability and culture.

 

Conclusion: A critical view of prevailing understandings of disability and development is key to producing the knowledge necessary to eradicate poverty amongst persons with disability and other vulnerable groups. Not only do we need research that is actually designed to reveal the mechanisms behind the disability–poverty relationship, we need research that is less tied up with broad political agreements that is not necessarily reflecting the realities at ground level.

Disability and masculinity in South African autosomatography

LIPENGA, Ken J
2014

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This article examines the representation of disability by disabled black South African men as portrayed in two texts from the autosomatography genre, which encompasses first-person narratives of illness and disability. Drawing on extracts from Musa E. Zulu’s The language of me and William Zulu’s Spring will come, the article argues that physical disability affects heteronormative concepts of masculinity by altering the body, which is the primary referent for the construction and performance of hegemonic masculinity. In ableist contexts, the male disabled body may be accorded labels of asexuality. This article therefore reveals how male characters with disabilities reconstruct the male self by both reintegrating themselves within the dominant grid of masculinity and reformulating some of the tenets of hegemonic masculinity.

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.

Sexual and reproductive health needs assessment with deaf people in Ghana: Methodological challenges and ethical concerns

MPRAH, Wisdom K
2013

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Background: Deafness is a complex and multifaceted phenomenon. The different ways of perceiving and understanding deafness have practical implications for research with deaf people. Whilst the deaf community is not homogenous, it is generally distinct from the hearing population. Consequently, the appropriateness of applying research methods and informed concern processes designed for the hearing population in research with deaf people has been questioned.

 

Objectives: This article reflected on some methodological challenges and ethical concerns arising from conducting a sexual and reproductive health needs assessment with deaf people in Ghana. The aim was to provide some perspectives on some of the challenges associated with doing research with deaf people.

 

Method: The study was a two phase, sequential, mixed methods design, consisting of three focus groups to assist in the development of a survey and then the implementation of the survey for needs assessment data collection. The number of participants in the study was 179, consisting of 26 focus group participants: 7 executives of the Ghana National Association of the Deaf (GNAD), 10 male adults, and 9 female adults. There were 152 survey respondents (students, women and men) and one key informant. All participants, except the key informant, were deaf people.

 

Results: The application of traditional research methods to studies involving deaf participants presents numerous methodological and ethical dilemmas associated mainly with deaf people’s unique cultural and linguistic characteristics.

 

Conclusion: Research methods should not be taken as universal guidelines for conducting research in all settings because of differences in settings.

 

Knowledge and use of contraceptive methods amongst deaf people in Ghana

MPRAH, Wisdom K
2013

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Background: Persons with disabilities in general face serious barriers to sexual and reproductive health (SRH) information and services due to institutional and attitudinal barriers. However, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. Whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst Ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people.

 

Objectives: The objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in Ghana with the aim of understanding their contraceptive behaviour and to improve access.

 

Method: The study was a participatory SRH needs assessment utilising a two-phase, sequential, mixed methods design. The study included 179 participants, consisting of focus groups with seven executives of Ghana National Association of the Deaf (GNAD), 10 male deaf adults, and 9 deaf female adults. A total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant.

 

Results: The findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. Level of knowledge of the remaining nine methods was low.

 

Conclusion: Clear and effective policies are needed to guide the provision of SRH information and services for deaf people in Ghana.

Disabling sexualities: Exploring the impact of the intersection of HIV, disability and gender on the sexualities of women in Zambia

WICKENDEN, Anna
NIXON, Stephanie
YOSHIDA, Karen K
2013

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Background: Women with a disability are often characterised as a homogenous social group consigned to a cultural stereotype with assumptions of dependence, asexuality and gender neutrality. Furthermore, there is a void of research about the experience of people with disabilities following diagnosis with HIV. Little is known about how HIV diagnosis intersects with disability and gender and how it shapes the experiences of intimacy and gender roles of those negotiating this intersection.

 

Objective: The objective of this study was to explore how HIV, disability and gender shape the perspectives of HIV-positive women with disabilities regarding intimacy and gender roles.

 

Methods: Twelve women in Lusaka, Zambia were recruited for in-depth semi-structured interviews to explore their experiences of having a disability and living with HIV. Interviews were conducted in English, Bemba, Nyanja and Zambian sign language. Descriptive and thematic analyses were conducted, followed by in-depth gender analyses of data relating to intimacy and gender roles.

 

Results: Data analysis led to the identification of two main themes: the impact of HIV diagnosis on intimate relationships amongst the participants; and the disruption and renegotiation of gender roles. These findings demonstrate the loss of intimacy (often decided by the participants) and changes in women’s gender roles (infrequently decided by them).

 

Conclusions: The narrow approaches to sexuality and HIV that reinforce misconceptions and stereotypes need to change. In their place should be inclusive and disability and sex-positive approaches that are informed by the diverse realities of women’s lives. Further research is needed to develop stronger evidence of the impact of HIV and disability on gender roles and sexuality.

African indigenous knowledge and research

OWUSU-ANSAH, Frances E
MJI, Gubela
2013

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This paper seeks to heighten awareness about the need to include indigenous knowledge in the design and implementation of research, particularly disability research, in Africa. It affirms the suitability of the Afrocentric paradigm in African research and argues the necessity for an emancipatory and participatory type of research which values and includes indigenous knowledge and peoples. In the predominantly Western-oriented academic circles and investigations, the African voice is either sidelined or suppressed because indigenous knowledge and methods are often ignored or not taken seriously. This paper posits that to be meaningful and empowering, African-based research must, of necessity, include African thought and ideas from inception through completion to the implementation of policies arising from the research. In this way the work is both empowering and meaningful for context-specific lasting impact.

Inclusion of vulnerable groups in health policies: Regional policies on health priorities in Africa

SCHNEIDER, Margie
EIDE, Arne Henning
AMIN, Mutamad
MACLACHLAN, Malcom
MANNAN, Hasheem
2013

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Background: If access to equitable health care is to be achieved for all, policy documents must mention and address in some detail different needs of groups vulnerable to not accessing such health care. If these needs are not addressed in the policy documents, there is little chance that they will be addressed at the stage of implementation.

 

Objectives: This paper reports on an analysis of 11 African Union (AU) policy documents to ascertain the frequency and the extent of mention of 13 core concepts in relation to 12 vulnerable groups, with a specific focus on people with disabilities.

 

Method: The paper applied the EquiFrame analytical framework to the 11 AU policy documents. The 11 documents were analysed in terms of how many times a core concept was mentioned and the extent of information on how the core concept should be addressed at the implementation level. Each core concept mention was further analysed in terms of the vulnerable group in referred to.

 

Results: The analysis of regional AU policies highlighted the broad nature of the reference made to vulnerable groups, with a lack of detailed specifications of different needs of different groups. This is confirmed in the highest vulnerable group mention being for ‘universal’. The reading of the documents suggests that vulnerable groups are homogeneous in their needs, which is not the case. There is a lack of recognition of different needs of different vulnerable groups in accessing health care.

 

Conclusion: The need for more information and knowledge on the needs of all vulnerable groups is evident. The current lack of mention and of any detail on how to address needs of vulnerable groups will significantly impair the access to equitable health care for all.

Perceptions of caring for children with disabilities: Experiences from Moshi, Tanzania

MCNALLY, Anna
MANNAN, Hasheem
2013

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Background: Although there exist laws, policies and standards in Tanzania that serve to protect and improve the lives of children with disabilities, the individual human experiences and feelings of the carers and parents still remain the realities of caring for children with disabilities. There is a lack of qualitative studies examining experiences in a developing context. This research aimed to fill that gap.

 

Objectives: The objective of this research was to gain an insight into how having a child with a disability impacts upon participants lives and to examine both negative and positive experiences of care through the use of qualitative methods.

 

Method: This was a qualitative, exploratory study and followed a phenomenological method. Purposive convenience sampling methods were used to recruit 14 carers in Moshi, Tanzania. Qualitative, semi-structured interviews were undertaken with all 14 participants.

 

Results: Five main themes emerged from the data which shed light on the carers experiences, namely, objective challenges in terms of financial challenges, employment issues and demands of care; subjective challenges in the form of stigma, isolation and pity; positive experiences such as the child’s progress, respect and happiness; material and financial needs; and coping mechanisms which included beliefs, support and attitudes.

 

Conclusion: The findings of this research were that objective challenges are common and more significant than subjective challenges. Positive experiences were not as easily identified by the participants as the challenges faced. However, having analysed the data, carers do not experience their roles as entirely negative. They simply need the resources to deal with objective challenges which in a developing context are not easily attainable.

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.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

ALDERSEY, Heather M
2012

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When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

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.

Perceived control, academic performance and well-being of Ghanaian college students with disability

OWUSU-ANSAH, Frances E
AGYEI-BAFFOUR, Peter
EDUSEI, Anthony
2012

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Background: Empirical evidence abounds showing the impact of perceived control on subjective well-being in several spheres of functioning, including academic performance. At tertiary institutions, such as the Kwame Nkrumah University of Science and Technology, Ghana, little is known about the needs of students with disabilities, as very few persons with disabilities attend institutions of higher learning.

 

Objectives: This study examined the relationship between perceptions of control and the academic and subjective well-being of students with disabilities.

 

Method: A total of 69 students with disabilities participated in this cross-sectional descriptive study. Using trusted control and subjective well-being scales, data were subject to descriptive analyses.

 

Results: Consistent with previous works, perceived control increased with increased subjective well-being, moderated by gender. In addition, forms of secondary control appeared to aid primary control in the tenacious pursuit of goals. However, neither perceived control nor self-esteem was predictive of academic performance.

 

Conclusion: Limitations of sample size notwithstanding, the findings of the study can be considered provocative. Implications for clinical utility in facilitating context-specific interventions for this marginalised group are discussed. Replication with a larger sample size in other tertiary institutions is suggested for future work.

Journey through the Trials and Triumphs of Disability

LAAS, Helen L
2012

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One Woman’s journey through the Trials and Triumphs of Disability, Disabled Peoples International 8th World Assembly 2011 Durban, South Africa, October 10–13, 2011. When embarking on my career as a teacher at a special school in South Africa, I never thought that a motor vehicle accident would place me in the position where my learners with disabilities suddenly saw me as an ally. Little did I realise the chasm that exists between able-bodied people and people with disabilities, or the remarkable role I would find myself in whilst actively addressing disability and Inclusive Education issues. My experiences with disability in South Africa drew encouraging attention from delegates at the Disabled People’s International 8th World Assembly when I shared my story. The resounding positive response affirmed that my experiences are not unique to nationality, gender, race or age, and are typical of the time and country in which I live, where people with disabilities are considered to have little potential, and woman with disabilities are further marginalised. In the infancy of our democracy, we are still in the early days of attending to equity amongst all South Africans. This story comprises both a narrative and a graphic presentation which run parallel, although not always telling an identical story; they complement one another and should be experienced simultaneously. Ultimately, it relates the success that can be achieved by pro-active people with disabilities as members of the South African society within their own spheres of knowledge and skill to change attitudes and practices of people without disabilities in education and local communities.

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