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Impact of lived experiences of people with disabilities in the built environment in South Africa

McKINNEY, Victor
AMOSUN, Seyi L.
August 2020

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Background: In spite of legislations and policies to ensure an inclusive society in South Africa for the accommodation of people with disabilities, there are reports that they still struggle to move freely within society.

 

Objectives: As part of a larger qualitative exploratory study on the preparation of undergraduate civil engineering students in a local university to contribute to the development of an inclusive society, this article seeks to understand the impact of the lived experiences of people with disabilities in their interaction with the built environment.

 

Method: Four persons with disabilities, considered to be knowledgeable about South African legislations relating to disability, were purposely selected to each share one specific experience whilst interacting with the built environment. The transcribed texts of the interviews were analysed by using the phenomenological–hermeneutic method.

 

Results: The participants exhibited strong desires to participate in society. However, the sense of loss of control and independence as they encountered challenges in the built environment changed the euphoria to disempowerment, rejection, anger and despondency. In spite of their experiences, participants expressed a commitment towards overcoming the challenges encountered in the broader interest of people with disabilities.

 

Conclusion: A deeper understanding of the impact of the experiences of people with disabilities when they participate within the built environment in South Africa revealed a broad spectrum of negative emotions, which may impact the quality of life and well-being of the participants.

 

 

African Journal of Disability, Vol 9, 2020

What do we know about how to support mental health and wellbeing during the COVID-19 pandemic from past infectious disease epidemics?

QURESH, Onaiza
SCHERER, Nathaniel
July 2020

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The question and the problem:

Symptoms of mental ill-health are common during widespread outbreak of an infectious disease, with high rates of depression, anxiety and post-traumatic stress disorder (PTSD) reported during recent epidemics, such as the recent Ebola crises and SARS-CoV-1. Elevated symptoms of mental ill-health are not limited to patients only, and are seen in healthcare workers, family members and indeed more widely across the general population. Early evidence coming from the COVID-19 pandemic demonstrates high rates of mental ill-health and mental health service provision is needed. This evidence brief summarises evidence on mental health support during COVID-19 and other recent pandemics, informing policy and practice during this crisis.

Recording of the Virtual Event: COVID-19 Crisis and Promoting Rights of Women and Girls with Disabilities

IDA
April 2020

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Recording of the Virtual Event: COVID-19 & Promoting the Rights of Women and Girls with Disabilities

On April 8, 2020, IDA in collaboration with the EDF held the Virtual Event: COVID-19 crisis and Promoting Rights of Women and Girls with Disabilities. The virtual event with 572 registered participants was an effort to provide space and prevent any loss of momentum in promoting the rights of women and girls with disabilities in the global gender equality agenda. 

During the webinar, the panelists have discussed various topics ranging from the inclusion of women and girls with disabilities into mainstream gender mainstreaming strategies, multiple forms of discrimination faced by women and girls with various forms of disability, and the impact of the current pandemic on their well-being.

Functional outcome of stroke inpatients according to human immunodeficiency virus status: A feasibility study

HARTLEY, Tasneem
BURGER, Marlette
ESTERHUIZEN, Tonya M
INGLIS-JASSIEM, Gakeemah
March 2020

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Background: Stroke in human immunodeficiency virus positive (HIV+) individuals is becoming an increasing concern. Being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent.

 

Objectives: This feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying HIV status.

 

Method: All stroke patients meeting the inclusion criteria were recruited over a 6-month period at a South African inpatient rehabilitation centre. Data were collected on admission and discharge using outcome measures including the Barthel Index (BI), Berg Balance Scale (BBS) and the use of assistive devices used to describe independence with activities of daily living (ADL), mobility and safety post-stroke. Statistical analysis was performed using Stata version 14.2.

 

Results: The feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. Limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant HIV status. An appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding.

 

Conclusion: To increase generalisability and the understanding of the unique HIV+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with HIV status confirmation are recommended.

 

 

African Journal of Disability, Vol 9, 2020

Quality of Life of Persons with Disabilities in Southern Nations, Nationalities, and Peoples’ Region, Ethiopia

BAART, Judith
SCHIPPERS, Alice
META, Mamush
2019

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Purpose: There is very little demographic or prevalence data  regarding persons with disabilities in Ethiopia, let alone data on more in-depth factors such as access to services or quality of life. This study aimed to find out about the current quality of life of persons with disabilities in Southern Nations, Nationalities, and Peoples’ Region (SNNPR), Ethiopia.

 

Method: The WHO CBR Indicator Survey was used to measure quality of life, and the Washington Group Short Set was included to allow disaggregation of the data by different types of functional limitations. Interviews were conducted with 966 persons with disabilities in 10 towns in SNNPR. The majority of data collectors were persons with disabilities themselves.

 

Results: People with disabilities who were surveyed generally regarded their health as good (65.9%). Very few had significant levels of education (16.5% were completing higher education). Only 6.7% were working for wages and 45.2% were reportedly working on their own account. Hardly any of them (2.9%) stated that their money was sufficient for their needs. Only a small group (38%) felt valued in their community. Just over half of the respondents (56.6%) were members of a Disabled Persons’ Organisation (DPO) or any other self-representing group.

 

Conclusion: Persons with disabilities scored relatively or extremely low in all areas of life measured with the CBR Indicator Survey (health, education, livelihood, social and empowerment). The survey will be repeated after a few years in the same communities to measure changes over time, and persons without disabilities will be included in order to draw comparisons.

 

Implications: Public and private organisations in SNNPR need to become more accessible and inclusive of persons with disabilities so as to improve their quality of life.

Health-Related Quality of Life of Wheelchair Fencers, Sedentary People with Disability and Conventional Fencers in Brazil, Assessed by Short Form 36 (SF-36)

CLEMENTE, Mirna
MIGUEL, Marilis Dallarmi
FELIPE, Karina Bettega
SCHWANTES, Ivan Marangon
JUNIOR, Darlan França Ciesielski
SCHWANTES, Athos Marangon
SCHONHOFEN, Christian Burmeister
ALVES, Tabea Epp Kuster
BRAZ, Tiago Volpi
FERNANDES, Luiz Claudio
MIGUEL, Obdulio Gomes
2019

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Purpose: It is well established that physical exercise, in general, decreases anxiety and depression. Para sport or sport for people with disabilities is used as a rehabilitation strategy to improve their quality of life. This study aimed to investigate people with disabilities who practise wheelchair fencing, sedentary people with physical disability and conventional fencers, assessed by Short Form 36 (SF-36), by comparing the groups.

 

Method: Forty-two people from Physical Disability Association of Parana (ADFP) answered SF-36 and were divided into three groups: Conventional Fencers (CF), Wheelchair Fencers (WF), and Sedentary People with Physical Disability (SD).

 

Results: This study was the first to report the Health-Related Quality of Life (HRQOL) of conventional fencers, wheelchair fencers, and sedentary people with physical disability, using SF-36. The data demonstrated high scores in CF and WF, on seven SF-36 scales of the eight-scale profile, including functional and mental health, role physical, bodily pain, general health perception, vitality, social functioning, mental health. Moreover, the sedentary group had lower scores in most of the domains when they were compared to CF.

 

Conclusion: The results might provide supportive evidence that HRQOL of WF has demonstrated a positive effect on people with disability since para sport has been used as a rehabilitation programme.

 

Implication: The implementation of a public campaign is recommended, about sport as a health promoter for disability and rehabilitation. By involving healthcare providers from the area, people with disabilities can be encouraged to participate in para sport.

Disability Inclusion Helpdesk Report No: 15 : Mental health and psychosocial support (MHPSS) in Syria: concepts, reality and effectiveness of interventions

LEE, Harri
ZIVERI, Davide
PFEFFER, Lauriane
July 2019

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Summaries on the findings from the following queries:

Define mental health and psychosocial support (MHPSS) and intended outcomes of these interventions (at the global level).

What is the evidence on the nature of the problem and the scale of need for MHPSS services in Syria?

What is the evidence on effectiveness of MHPSS interventions in Syria?

Inter- and intra-household perceived relative inequality among disabled and non-disabled people in Liberia

CAREW, Mark T.
COLBOURN, Tim
COLE, Ellie
NGAFUAN, Richard
GROCE, Nora
KETT, Maria
July 2019

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Evidence suggests that people with disabilities are the most marginalised and vulnerable group within any population. However, little is known about the extent of inequality between people with and without disabilities in contexts where the majority of persons experience extreme poverty and hardship. This includes in Liberia, where very little is understood about the lives of disabled people in general. This study uses a multidimensional wellbeing framework to understand perceived relative inequality associated with disability by assessing several facets of wellbeing across and within households containing disabled members (N = 485) or households with no disabled members (N = 538) in Liberian communities (Total individuals surveyed, N = 2020). Statistical comparisons (adjusted for age, sex, education and wealth differences and clustered at the household, village and county level) reveal that disabled Liberians are managing similarly to non-disabled Liberians in terms of income and education, but experience many perceived relative inequalities including in life satisfaction, transport access, political participation and social inclusion.

 

PLoS ONE 14(7)

https://doi.org/10.1371/journal.pone.0217873

Associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury

MASHOLA, Mokgadi K.
MOTHABENG, Diphale J.
2019

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Background: The development of secondary health conditions (SHCs) after spinal cord injury (SCI) is common and can affect an individual’s emotional well-being, and his or her health-related quality of life (QOL). Little is known about relationships between performing health-benefiting behaviours and the presence (or absence) of SHCs and QOL, particularly in South Africa.

 

Objectives: This research study was conducted in order to determine the associations between health behaviour, SHCs and QOL in people with SCI (PWSCI).

 

Method: This cross-sectional study included 36 PWSCI discharged from a private rehabilitation facility in Pretoria, South Africa. The PWSCI completed questionnaires pertaining to lifestyle, independence, presence of SHCs, social support and QOL. Data were analysed using descriptive and inferential statistics such as correlation tests and chi-square test of independence (x2) using the SPSS v25. Moderate, moderately high and high correlations are reported (Pearson r ≥ 0.4). Results were significant if p < 0.05.

 

Results: Participation in health-benefiting behaviour was associated with increased QOL (r = 0.457, p < 0.01) and increased social support from family and friends (r = 0.425, p < 0.01), which was associated with increased QOL (r = 0.671, p < 0.001). Not participating in specific neuromusculoskeletal health behaviours was found to be associated with the overall presence of SHCs (r = -0.426, p < 0.01).

 

Conclusions: Participating in health-benefiting behaviour can reduce the development of SHCs and subsequently increase QOL in PWSCI. Health professionals must focus on minimising the development of SHCs by providing specific education on good health-benefiting behaviour.

 

African Journal of Disability, Vol 8, 2019

Improvements in health-related quality of life and function in middle-aged women with chronic diseases of lifestyle after participating in a non-pharmacological intervention programme: A pragmatic randomised controlled trial

BARNES, Roline Y
JELSMA, Jennifer
PARKER, Romy
2019

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Background: Musculoskeletal diseases consume a large amount of health and social resources and are a major cause of disability in both low- and high-income countries. In addition, patients frequently present with co-morbid chronic diseases of lifestyle. The area of musculoskeletal disease is restricted by a lack of epidemiological knowledge, particularly in low- and middle-income countries.

 

Objectives: This pragmatic randomised controlled trial assessed the benefits of a 6-week physiotherapy intervention for middle-aged women with musculoskeletal conditions compared to usual care.

 

Method: A weekly 2-h educational programme utilising a workbook, discussion group and exercise class was presented for the intervention group, while the control group received usual care. The primary outcome was health-related quality of life. Parametric and non-parametric data were used to determine the equivalence between the groups.

 

Results: Twenty-two participants were randomised to the intervention and 20 to the control group. The control group demonstrated no within-group improvement in health-related quality of life items, compared to significant improvements in two items in the intervention group. The change in median utility score within the intervention group was twice as large as the change in the control group. With regard to self-efficacy, the intervention group demonstrated significant within-group changes in perceived management of fatigue and discomfort.

 

Conclusion: The positive impact of the intervention on the participants suggests that the programme should continue at the clinic in question, but should be presented at a more convenient time for participants who work, as recruitment to the study was less than anticipated. Primary health care systems in South Africa urgently need to put structures in place for effective management of the functional impact of chronic diseases of lifestyle and musculoskeletal conditions. It is time for physiotherapists and possibly other health care professionals to participate in the development of appropriate community level interventions to address the functioning and quality of life of individuals living with the diseases.

 

African Journal of Disability, Vol 8, 2019

The Arabic version of Trinity Amputation and Prosthetic Experience Scale - Revised (TAPES-R) for lower limb amputees: Reliability and validity

MASSARWEH, Reem
SOBUH, Mohammad
2019

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Purpose: Despite the importance of the evaluation process in lower limb prosthetic rehabilitation, prostheses are rarely evaluated properly in the Arab world. This is partly due to the absence of any suitable Arabic evaluative tool. The aim of this study is to translate TAPES-R (a standardised evaluative questionnaire) into Arabic and to investigate its psychometric properties on lower limb amputees. Such a tool would ultimately be of benefit for clinical follow-up and research purposes.

 

Method: International standards were followed for the forward- and back-translation of the TAPES-R questionnaire. A sample of 111 Arabic-speaking volunteers with lower limb amputation completed the translated version of the questionnaire. The responses were then statistically analysed using factor analysis and Cronbach’s α to assess the content and construct validity, and internal consistency (reliability) respectively.

 

Results: Factor analysis showed that the questionnaire’s items (included in the analysis) can be divided into three distinct dimensions as was originally suggested. The distribution of the items within the three dimensions is comparable with the original questionnaire. All three parts of TAPES-R showed high reliability; where Cronbach’s α were .892, .894, and .873 respectively.

 

Conclusion: This study found that the Arabic version of TAPES-R represents a valid and reliable tool.

 

Limitations: The questionnaire is designed to be emailed or posted, but the majority of the amputee population in Jordan did not have these services, so direct contact with each participant was necessary.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Impact of parenting a child with cerebral palsy on the quality of life of parents: A systematic review of literature

RAMANANDI, Vivek H
PARMAR, Trupti Rudra
PANCHAL, Juhi Kalpesh
PRABHAKAR, M M
et al
2019

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Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.

 

Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

 

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Psychosocial disability in the Middle East

BOLTON. Laura
May 2018

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A K4 helpdesk report, commissioned by DFID (UK), provides a rapid review of literature to provide best estimates of psychosocial disability in specific countries in the Middle East.

Topics discussed include:

Prevalence and different forms of mental health conditions and psychosocial disability

Factors influencing prevalence

Differences across demographics

Provision for those with psychosocial disabilities

The burden of mental disorders in the eastern Mediterranean region, 1990-2013

CHARARA, Raghid
et al
January 2017

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The Eastern Mediterranean Region (EMR) is witnessing an increase in chronic disorders, including mental illness. With ongoing unrest, this is expected to rise. This is the first study to quantify the burden of mental disorders in the EMR. Data was used from the Global Burden of Disease study (GBD) 2013. DALYs (disability-adjusted life years) allow assessment of both premature mortality (years of life lost–YLLs) and nonfatal outcomes (years lived with disability–YLDs). DALYs are computed by adding YLLs and YLDs for each age-sex-country group.

 

https://doi.org/10.1371/journal.pone.0169575

Improving lives. The work, health and disability Green Paper

October 2016

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Employment rates amongst disabled people reveal one of the most significant inequalities in the UK today: less than half (48%) of disabled people are in employment compared to 80% of the non-disabled population. Despite a record-breaking labour market, 4.6 million disabled people and people with long-term health conditions are out of work leaving individuals, and some large parts of communities, disconnected from the benefits that work brings. People who are unemployed have higher rates of mortality and a lower quality of life. This green paper sets out the nature of the problem and why change is needed by employers, the welfare system, health and care providers, and all of us. Proposed solutions are set out  and views requested. (Consultation now closed)

04101608 10/16 

Rapid assessment of disability in the Philippines: understanding prevalence, well-being, and access to the community for people with disabilities to inform the W-DARE project

MARELLA, Manjula
DEVINE, Alexandra
ARMECIN, Graeme
et al
August 2016

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The aim of this study was to estimate the prevalence of disability and compare the well-being and access to the community between people with and without disabilities. A population-based survey was undertaken in District 2 of Quezon City and in Ligao City. 60 clusters of 50 people aged 18 years and older were selected with probability proportion to size sampling from both locations. The Rapid Assessment of Disability (RAD) survey was used to identify people with disabilities based on their responses to activity limitations. The levels of well-being and access to the community for people with disabilities were compared with controls matched by age, gender, and cluster. Information on barriers to accessing the community was also collected.

Popul Health Metrics 14, 26 (2016)

DOI 10.1186/s12963-016-0096-y

Community based rehabilitation for people with disabilities in low and middle income countries : a systematic review

IEMMI, Valentina
et al
September 2015

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This Campbell Collaboration systematic review assesses the effectiveness and cost-effectiveness of community-based rehabilitation (CBR) for people with physical and mental disabilities in low- and middle-income countries, and/or their family, their carers, and their community. This review identified 15 studies that assessed the impact of community-based rehabilitation on the lives of people with disabilities and their carers in low- and middle-income countries. The studies included in the review used different types of community-based rehabilitation interventions and targeted different types of physical (stroke, arthritis, chronic obstructive pulmonary disease) and mental disabilities (schizophrenia, dementia, intellectual impairment). The authors conclude that the evidence on the effectiveness of CBR for people with disabilities in low- and middle-income countries suggests that CBR may be effective in improving the clinical outcomes and enhancing functioning and quality of life of the person with disabilities and his/her carer and recommend future studies will need to adopt better study designs, will need to focus on broader clients group, and to include economic evaluations

Campbell Systematic Reviews 2015:15

Participation and quality of life outcomes among individuals with earthquake-related physical disability: A systematic review

NUNNERLEY, Joanne
DUNN, Jennifer
McPHERSON, Kathryn
et al
May 2015

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A literature review to evaluate quality of life and participation outcomes of individuals with earthquake-related physical injury. A systematic review was performed searching MEDLINE, Embase, PsychINFO, CINAHL and AMED electronic databases from 1966 to January 2014. Studies that measured quality of life or participation outcomes among individuals who acquired a physical disability as a result of an earthquake injury were included, with no limits on research design. The search yielded 961 potentially relevant articles after removal of duplicates. Of these, only 8 articles met the inclusion criteria. Seven papers were reviewed from the following 5 earthquakes: 2001 Gujarat earthquake, India; 2008 Wenchuan earthquake, China (also known as the Sichuan earthquake); 2005 Kashmir earthquake, Pakistan (27); 2009 Padang earthquake, Indonesia; 2010 Port-au-Prince earthquake.

Journal of Rehabilitation Medicine, vol.47, no.5, 2015, 385-393

10.2340/16501977-1965

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