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“The Situation has Exposed Persons with Disabilities to Double Edged Pain”: People with Disabilities’ Experiences of the COVID-19 Pandemic in Uganda
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This qualitative study was undertaken as part of the work of the Foreign, Commonwealth and Development Office (FCDO) funded Inclusion Works programme which aims to improve inclusive employment for people with disabilities in four countries: Uganda, Kenya, Nigeria, Bangladesh. When the COVID-19 pandemic emerged early in 2020 the work of this consortium programme was adapted to focus on pandemic relief and research activities, while some other planned work was not possible.
“This pandemic brought a lot of sadness”: people with disabilities’ experiences of the COVID-19 pandemic in Nigeria
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This qualitative study was undertaken as part of the work of the FCDO funded Inclusion Works programme which aims to improve inclusive employment for people with disabilities in four countries: Uganda, Kenya, Nigeria, Bangladesh. When the COVID-19 pandemic emerged early in 2020 the work of this consortium programme was adapted to focus on pandemic relief and research activities, while other planned worked was not possible.
The Institute of Development Studies (IDS) led a piece of qualitative research to explore the experiences and perceptions of the pandemic and related lockdowns in each country, using a narrative interview approach, which asks people to tell their stories, following up with some further questions once they have identified their priorities to talk about. 10 people with disabilities who were involved in Inclusion Works in each country were purposively selected to take part, each being invited to have two interviews with an interval of one or two months in between, in order to capture changes in their situation over time. The 10 interviewees had a range of impairments, were gender balanced and were various ages, as well as having differing living and working situations.
“Everything is Totally Uncertain Right Now”: People with Disabilities’ Experiences of the COVID-19 Pandemic in Bangladesh
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The COVID-19 pandemic is deepening pre-existing inequalities. Emerging research suggests that people with disabilities across the world have experienced various rights violations and been disproportionality affected by the health, economic and social impacts of the COVID-19 pandemic and the responses to it. The aim of this research was to explore how people with disabilities, who often are excluded from research, have experienced the evolving COVID-19 pandemic. In order to better understand how it has affected jobseekers with disabilities, in-depth qualitative research was conducted as part of the Inclusion Works programme in Bangladesh.
COVID 19 in Nepal: The Impact on Indigenous Peoples and Persons with Disabilities
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The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations.
Psychosocial Consequences of COVID-19 on Persons with Visual Impairments
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The ongoing pandemic situation has disrupted lives globally. These disruptions are embodied in gender, social location, ethnicity and in the body. Public health facilities, accessibility of urban infrastructure, support services for persons with disability, educational accessibility in cities prior to the pandemic have influenced the manner in which disabled people are able to adapt to the current situation. This paper presents the experiences of young people living with visual impairments who reside in an urban low-income community in India. It explores the unique challenges such as the further reduction in accessibility to health and educational facilities that they are facing and the manner in which their carefully structured everyday lives have changed. The narratives also describe the manner in which they are coping with the public health disaster in addition to preparing for the new ‘norms’ that people living with visual impairments are required to navigate as an outcome of the pandemic. The paper gives voice to their needs and requirements in this situation, and in turn, aims to inform policy responses through first person accounts.
Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19
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The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.
Bullying among primary school-aged students: which factors could strengthen their tendency towards resilience?
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Resilience is the capacity to cope successfully with various threats. This paper aims to adapt the Resilience-Scale of Schumacher et al. (2004. Die Resilienzskala – ein Fragebogen zur Erfassung der psychischen Widerstandsfähigkeit als Personmerkmal. [The Resilience Scale – A Questionnaire to Measure Mental Resilience as a Personal Characteristic]. Zentrum für Klinische Psychologie, Psychiatrie und Psychotherapie) to measure the tendency of being resilient even before a threat occurs. Since primary school students are exposed to various threats at school, 535 4th grade students of Austrian primary schools were surveyed for the study. The reliability of the short-scale was found to be acceptable (Cronbach’s α = .66), and the tendency towards resilience can be explained by the students’ perception of their social inclusion in class (F (1,252) = 15.11, p<.05) and the relationship with their mothers (F (2, 251) = 10, 02, p<.05). The stability of the students’ tendency of being resilient was only moderate. A similar correlation between resilience and school-wellbeing for victims and non-victims of bullying can be reported. Future studies should focus more on primary school students’ resilience and related protective factors.
Impact of Visual Impairment and Correction on Vision-Related Quality of Life: Comparing People with Different Levels of Visual Acuity in Indonesia
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Purpose: This study assessed the extent to which visual impairment impacts on vision-related quality of life in Indonesia, by comparing four groups of people: those with 1) normal vision, 2) corrected visual impairment, 3) uncorrected visual impairment, and 4) blindness.
Method: Purposive sampling was used. There were 162 respondents, between 21 and 86 years of age. Participants with normal vision and blindness were community-dwellers in Yogyakarta, Indonesia. Those with corrected and uncorrected visual impairment were recruited from an eye clinic. This cross- sectional study used NEI VFQ-25 to assess vision-related quality of life. The total scores and 11 NEI VFQ-25 subscales scores of four respondent groups were analysed using ANOVA, followed by post-hoc analyses to reveal between group differences.
Results: There was a significant difference in the NEI VFQ-25 total scores among the four respondent groups. Respondents with normal vision had the highest score and those with blindness had the lowest. There were also significant differences among the four groups for the 11 subscales. Post-hoc analyses revealed no significant difference between respondents with normal vision and corrected visual impairment in the total and 9 NEI VFQ-25 subscales. Respondents with uncorrected visual impairment and blindness had significantly lower vision- related quality of life compared to those with normal vision or corrected visual impairment in the total and 5 NEI VFQ-25 subscales, indicating that visual impairment decreases vision-related quality of life.
Conclusion: Visual impairment has a detrimental impact on a person’s vision- related quality of life. The negative impact of visual impairment can be minimised by correction. Failure to correct visual impairment leads to significantly lowervision-related quality of life.
The Quality of Life and Associated Factors in Indonesian Meningioma Clients after Surgery: A Cross-Sectional Study
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Purpose: The quality of life (QOL) of meningioma clients in Indonesia is poorly understood. This study aimed to investigate and examine the factors associated with the QOL of these meningioma clients after surgery, in order to help create an appropriate post-operative nursing intervention.
Method: This was a cross-sectional study. The QOL data was collected from a sample of 118 clients, using a EuroQol-5D-5L (EQ-5D-5L) questionnaire. Functional status, fatigue, illness perception and social support were assessed by the Barthel Index, FACIT-Fatigue Scale, Brief Illness Perception Questionnaire, and Medical Outcome Study Social Support Survey-6, respectively. Statistical analyses were conducted using the Chi-square test, Fisher’s exact test, and logistic regression test.
Results: After surgery, more than half of the 118 clients reported “ problems” in the EQ-5D dimensions of mobility (65%), self-care (57%), usual activities (70%), pain/discomfort (84%), and anxiety/depression (70%).The average postoperative EQ-5D index value (±SD) was 0.55 ± 0.26 while the median of EQ-VAS was 69.2 (IQR 40–90).Factors related to low QOL were age (p = 0.014), tumour grade (p = 0.0001), functional status (p = 0.0001), fatigue (p= 0.001), illness perception ( p = 0.0001), and social support (p = 0.001). Multivariate analysis showed that the most dominant factor associated with QOL was functional status (OR 6.728; Confidence interval=95%; p=0.008).
Conclusion and Implications:There is a correlation between age, tumour grade, functional status, fatigue, illness perception, and social support with the QOL of postoperative meningioma clients. The study recommends that these be included in their nursing assessment and an appropriate nursing rehabilitation programme be planned in order to improve their QOL.
Integrated Emotion-Oriented Care for Older People With ID: Defining and Understanding Intervention Components of a Person-Centered Approach
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An increase in descriptive evidence regarding person-centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well-being and quality of life. A specific Dutch example is the Integrated Emotion-Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in-depth understanding of the use of these components in the day-to-day support of older people with ID. A content analysis of five key documents was carried out. Five semi-structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus-group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion-Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion-Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed.
Mixed-Methods Programme Evaluation of Disability Equality Training (DET) in Mongolia
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Purpose: An evaluation of a disability equality training (DET) programme, based on the social model of disability, was conducted to explore the changes in the participants’ attitudes and behaviours in Ulaanbaatar, Mongolia.
Methods: This study is composed of two parts. First, the participants’ attitude changes during DET sessions were examined through a descriptive quantitative and qualitative analysis of questionnaires and related documents. Second, thebehavioural changes at the organisational and individual levels, the impact on society, and related factors were explored by quantitative and qualitative analysis of good practice cases: 39 participants were selected through purposive sampling and semi-structured interviews were conducted.
Results: It was found that most participants adopted the social model perspective within these sessions. A qualitative content analysis of the good practice cases also found that the majority of participants attempted to change their social environments after the sessions. Thematic analysis identified promotional factors, such as within-organisation dynamics and compatibility and barriers at the individual and organisational levels, which were associated with participants’ behaviours after DET sessions.
Conclusion: The implications of these findings are discussed in connection with the strategic implementation of DET to promote disability-inclusive development. Future studies should examine the effectiveness of a strategy by considering the factors identified in this study and by using a reliable sample in various settings where DET sessions are conducted.
Physical Activity of the Community- Dwelling Elderly Population in Gujarat, India: A Cross-Sectional Study
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Purpose: While ageing is an inevitable phenomenon of life, physical activity is important for healthy ageing. Compared to the other age groups, older adults throughout the world have the lowest rate of participation in recommended levels of physical activity. This study aimed to investigate the physical activity status of the community-dwelling elderly population in Gujarat, India.
Method: This was a cross-sectional study. A door-to-door survey was conducted among selected communities near Vadodara in Gujarat. Based on the inclusion criteria (age≥60years, MMSE-≥24), 347 elderly persons were included in the study. Data was collected using the Global Physical Activity Questionnaire (GPAQ), and analysed using descriptive statistics.
Results: Among the 347 older adults (mean age 67.43±7.46 years) who participated in the study, 159 were male and 188 were female. While 125 participants (36%) were physically active at levels recommended by the World Health Organisation, 222(64%) were physically inactive.
Conclusion: Only 36% of the participants were physically active as per WHO recommendations. The men were more physically active than the women in the study sample. This study implies that there is a need to create an awareness regarding the importance of physical activity for healthy aging.
Physical Activity, Enjoyment and Quality of Life among Institutionalised Older Adults in Malaysia: A Cross-Sectional Study
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Purpose: In many nations across the world it has become a priority to stimulate increased physical activity (PA) among elderly persons. This study aimed to find the association between physical activity patterns and enjoyment of physical activity and health-related quality of life (HRQoL) among institutionalised older adults in Malaysia.
Method: A sample of institutionalised older adults (n=134, mean age = 73.72; SD = 8.59) was recruited from the Klang valley in Malaysia. In cross-sectional analyses, their physical activity, enjoyment of physical activity and quality of life were screened using the Physical Activity Scale for the Elderly, the 8-item Physical Activity Enjoyment Scale and the EuroQuol-5 Dimensions-5 Levels questionnaires, respectively. High levels of physical activity were associated with enjoyment of physical activity and health-related quality of life.
Results: In total, 41% of the participants met the guidelines of the Physical Activity Scale for the Elderly and 53% enjoyed physical activity. A positive correlation was found between the level of physical activity and its enjoyment (rs = .355, p <.001). Significant correlations were recorded between the dimensions of health-related quality of life and the level of physical activity (p < 0.001), except for pain/discomfort and anxiety/depression.
Conclusion: Providing opportunities for institutionalised older adults to engage in a variety of activities might help them to identify the kind of physical activity they enjoy and facilitate a lifelong physical activity routine.
Novel lateral transfer assist robot decreases the difficulty of transfer in post-stroke hemiparesis patients: a pilot study
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Purpose
The purpose of this study was to clarify whether the novel lateral transfer assist robot facilitates easier transfers compared with a wheelchair in post-stroke hemiparesis patients.
Methods
This cross-sectional study enrolled 20 post-stroke hemiparesis patients, and the task difficulty of transfers was compared between a wheelchair and lateral transfer assist robot. All participants were asked to transfer from either wheelchair or lateral transfer assist robot to a platform table and back. The primary outcome was the transfer score of the Functional Independence Measure. The secondary outcome was the time required for transfer.
Results
The transfer score of the Functional Independence Measure was significantly higher with lateral transfer assist robot than with wheelchair (p < .001). The transfer times from these devices to a platform table and back showed no significant differences (to device from platform table: 7.8 s, lateral transfer assist robot vs 7.6 s, wheelchair, p > .05: device to platform table: 7.1 s, lateral transfer assist robot vs 8.0 s, wheelchair, p > .05).
Conclusions
Transfer with a lateral transfer assist robot is easier than with wheelchair and facilitates independence in post-stroke hemiparesis patients.
Impact of lived experiences of people with disabilities in the built environment in South Africa
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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
The value of powered mobility scooters from the perspective of elderly spouses of the users – a qualitative study
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Purpose
To explore spouses’ experiences of the value of mobility scooters prescribed to their partner.
Material and Methods
A descriptive design with a qualitative approach was used. Thirteen spouses (11 females) aged 65–86 years participated. Semi-structured interviews were conducted when the spouse’s partner had had the mobility scooter for 4–6 months. The interviews were analysed using qualitative content analysis.
Results
The interviews showed primarily that the spouses experienced that their everyday lives and life situation had improved since their partner had received a mobility scooter. They reported that they could engage in activities of their own choice to a greater extent. The prescription of a mobility scooter to their partner had also yielded a sense of freedom related to shared activities. On the other hand, the spouses described some of the scooter’s limitations. Three categories emerged: a sense of freedom related to the spouse’s own activities, a sense of freedom related to shared activities and a somewhat restricted freedom.
Conclusion
Prescription of a powered mobility scooter was of value to the users’ spouses because it facilitated independent and shared activities and participation in the community. The value was mainly expressed as a sense of freedom when doing things on their own or together with their partner. Spouses are key persons in the rehabilitation of people with mobility restrictions. Their views on the assistive device may influence the rehabilitation process. Knowledge of spouses’ experiences is thus crucial, as this may influence the future rehabilitation outcome.
What do we know about how to support mental health and wellbeing during the COVID-19 pandemic from past infectious disease epidemics?
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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.
Changes in Living Conditions of People with ID: A Follow-Up after 16 Years
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Background: The Swedish disability policy has an ambition that people with disabilities should have the possibility to live like everyone else in the community. A study in 2001 described living conditions of people with ID born 1959–1974 in Uppsala County as compared to the general population in the same age group. The results showed differences between the two groups, particularly regarding employment, finances, and social life.
Specific Aims: The aim of the present study were to explore changes in living conditions of a group of people with ID in a 16-year perspective and to compare the outcomes with changes in living conditions of the general population in corresponding age groups.
Methods: Information on the living conditions of people with ID for 40 persons who participated in the study 2001 was obtained through proxy reports at 2001 and 2017. National welfare statistics were used to obtain data on the general population. The study focus objective living conditions selected by people with ID including housing, occupation, nances, recreational and cultural activ-
ities, family and social relations, society participation, and personal safety.
Findings: The results showed clear differences in living conditions to the disadvantage of the sample of people with ID. However, no differences related to gender and level of functional limitations were identied within the study group.
Discussion: Even if the study sample is small, the study makes an important contribution to the body of existing literature because knowledge is insufficient on changes over time regarding the living conditions of people with ID in community-based residences. Such knowledge is necessary to identify patterns of equality and inequality and illustrate to what extent people with ID share welfare benefits over time.
Recording of the Virtual Event: COVID-19 Crisis and Promoting Rights of Women and Girls with Disabilities
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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.
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