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The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period

PATEL, Varsha
PEREZ-OLIVAS, Gisela
KROESE, Biza Stenfert
ROGERS, Gemma
ROSE, John
MURPHY, Glynis
COOPER, Vivien
LANGDON, Peter E
HILES, Steve
CLIFFORD, Clair
WILLNER, Paul
2021

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Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.


Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the rst 2020 lockdown period.


Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.


Results: Four main themes were identied: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.


Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These Findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

Engaging girls and women with disabilities in the global South: Beyond cultural and geopolitical generalizations

NGUYEN, Xuan Thuy
STIENSTRA, Deborah
2021

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This article invites readers to engage with girls and women with disabilities in the global South. It challenges the epistemological domination of Western disability studies in Southern bodies and contexts, and provides one specific way to read the intersection between disability, gender, and ethnicity in the context of Vietnam. Drawing on the politics of engagement developed within the Transforming Disability Knowledge, Research, and Activism project, we argue for recognizing the lingering impacts of colonialism and imperialism in producing disability and impairment in the South, while suggesting new ways of engaging with disabled girls and women through the use of inclusive, decolonial, and participatory methods.

Life Becomes Harder: Intersectional Feminist Lens to Dis/abled Experience of Women in Afghanistan during Covid 19 Pandemic and Post Covid Development Context

SHAJAHAN, Sharin
2021

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More than 40 years of war, ethnic conflict, violence and poverty have made Afghanistan a country where at least one in five live with a serious physical, sensory, intellectual, or psychosocial disability. Women with disabilities in Afghanistan are considered to be ‘doubly stigmatized’ due to gender inequality and disability stigmatization, and are often hidden from the social and political aspects of life. Although in the post-Taliban era, development interventions backed by international aid have been designed to include women with disabilities, their intersectionalities cutting across class, ethnicity, region, different types of impairments and other positionalities have not been explored to address different needs, barriers and inequalities across various regions. In this context, the Covid 19 crisis has made the lives of Afghan women with disabilities harder due to gender discrimination, stigma and shame, unemployment, lack of mobility, lack of awareness, and insufficient institutional support and infrastructure coupled with widespread feelings of insecurity resulting from conflict and terrorist attacks. Based on both primary and secondary data, this paper will shed a feminist intersectional insight into the plight of women with dis/abled experience during the Covid 19 pandemic in the complex political and social terrain of Afghanistan. The paper will also explore visions for designing interventions aimed at integrating women with disabilities in post Covid development plans.

Let’s not go back to ‘normal’! lessons from COVID-19 for professionals working in childhood disability

ROSENBAUM, Peter L
SILVA, Mindy
CAMDEN, Chantal
January 2021

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Purpose: The worldwide COVID-19 pandemic has changed almost all aspects of our lives, and the field of childhood disability is no exception.

 

Methods: This article is based on an invited lecture by the first author at a conference–the eHealth Summit (“Pediatric Rehabilitation in a Digital Space”)–organized by the other authors and their colleagues in May 2020.

 

Results: The first author offers his own experiences and perspectives, supplemented by comments and observations contributed by many of the 9000+ attendees at this talk, as curated by the second and third authors. The basic messages are that while life for families of children with developmental disabilities, and for service providers who work with them, is significantly altered, many important lessons are being learned.

 

Conclusions: The comments from participants support the currency of the ideas that were presented, and encourage childhood disability professionals to reflect on what we are learning, so that we can seize the opportunities they afford to do things differently–and we believe better–moving forward.

Social media and disability advocacy organizations: caught between hopes and realities

GELFGREN, Stefan
INELAND, Jens
COCQ, Coppélie
2021

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This article examines the role of advocacy organizations and their use of social media within the field of disability in Sweden. How do the organizations negotiate digital media, and what are the (intentional or unintentional) consequences related to the use of social media? With focus on the representatives of advocacy organizations, we study how they reflect and act in order to balance various motives, and what challenges and ambiguities that arise. On one hand, there is a perceived need to be online and communicate with members and the surrounding society. On the other hand, digital communication induces a divide between those who have the resources to take part in such communication, and those who do not – in terms of digital competence, economy, age, cognitive abilities, technical equipment and digital connection. The heterogeneity of resources and target groups inevitably challenges both the ideals of inclusion and intentions of advocacy organizations.

The impact of COVID-19 measures on children with disabilities and their families in Uganda

MBAZZI, Femke Bannink
NALUGYA, Ruth
KAWESA, Elizabeth
NIMUSIIMA, Claire
KING, Rachel
VAN HOVE, Geert
SEELEY, Janet
2021

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To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses.

Determining Frailty in People With IntellectualDisabilities in the COVID-19 Pandemic

FESTEN, Dederieke A M
SCHOUFOUR, Josje D
HILGENKAMP, Thessa I M
OPPEWAL, Alyt
2021

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Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustiably exclude individuals with ID from IC treatment. Our objective was to compare the classication of individuals with ID
into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic.


Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classied according to the CFS and the ID-frailty index.


Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classifed as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classied as at least severely frail (CFS score 7–9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classied by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID.


Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.

Mixed-Methods Programme Evaluation of Disability Equality Training (DET) in Mongolia

Higashida, Masateru
Gereltuya, Ganbayar
Altanzul, Gantaikhuu
2020

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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.

Characteristics of Outpatients receiving Physical Therapy Services at a Provincial Hospital in Papua New Guinea: A Descriptive Case Study

Saito, Takashi
Bai, Angelberth
Matsui, Nobuko
Izawa, Kazuhiro P
Shuichiro Watanabe
Alfred Malagisa
2020

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Purpose: Development of Physical Therapy (PT) services for people with disability is one of the urgent challenges in the health sector in Papua New Guinea (PNG). However, information on the current status of PT services in PNG is scarce, as also is the case for the hospital-based outpatient PT services. This study aimed to describe the characteristics of outpatients receiving PT services in a provincial hospital in West New Britain (WNB) Province, PNG and to compare them with the characteristics of inpatients.

 

Method: This was a retrospective case study using outpatient and inpatient records. The records of clients receiving PT services as either outpatients (413 records, outpatient group) or inpatients (350 records, inpatient group) were reviewed in relation to sex, age and diagnosis. Comparisons were made between the two groups on basis of quantitative data of the two patient groups .

 

Results: The final analysis comprised 404 records in the outpatient group and 344 records in the inpatient group. In the outpatient group, injury and musculoskeletal disease were forming the most dominant diagnosis groups with 52.5% and 22.0%, respectively. Injury was most common in the age group 20 to 39 years and musculoskeletal diseases was most common in the age group 40 to 59 years. These two diagnosis groups and congenital malformations were significantly more represented among outpatients than among inpatients.

 

Conclusions: Young to middle-aged clients with injury or musculoskeletal disease were predominant among outpatient PT services as compared to inpatient services. The study findings serve to provide information on the current situation and potential needs of hospital-based outpatient PT services in one provincial hospital of PNG. These findings could be the base for planning outpatient PT service in WNB Province and PNG.

Quality of wheelchair services as perceived by users in rural Bangalore district, India: a cross-sectional survey

GEILEN, Bart G
DE WITTE, Luc
NORMAN, Gift
GEORGE, Carolin Elizabeth
2020

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Background and aim:

This study investigated the current state of wheelchair services in Bangalore Rural district, as provided by Bangalore Baptist Hospital, and identified areas for improvement.

 

Method:

a cross-sectional survey was held among 50 wheelchair users. Data was collected on demographics, satisfaction, wheelchair skills and level of disability using QUEST, WST-Q and CHART-SF questionnaires.

 

Result:

Overall satisfaction can be described as more or less satisfied, scoring 3.8 out of 5. Wheelchair users were less satisfied with the services compared to the wheelchair itself. The skills a wheelchair users had were strongly correlated with satisfaction scores (p < 0.01). Differences in satisfaction between genders were observed and related to multiple factors.

 

Conclusion:

Wheelchairs should be easy to use with support services being easily accessible. A wheelchair should be delivered together with a training program to provide the user with the skills to operate and maintain the wheelchair. There are gender-wise differences in satisfaction towards wheelchair services that influence satisfaction.

Teachers’ and parents’ attitudes towards inclusion of pupils with a first language other than the language of instruction

KAST, Julia
SCHWAB, Susanne
2020

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Due to the rising linguistic heterogeneity in schools, the inclusion of pupils with a first language other than the language of instruction is one of the major challenges of education systems all over the world. In this paper, attitudes of in-service teachers, pre-service teachers and parents towards the inclusion of pupils with a first language other than the language of instruction are examined. Additionally, as the paper focused on how the participants perceive the development of this pupils in different school settings (fully included, partly included, fully segregated).


Data from 1501 participants were investigated. Descriptive results showed that pre-service teachers’ attitudes towards the inclusive schooling of pupils with different language skills in composite classes were rather positive, while attitudes of in-service teachers and parents rather tend to be neutral. Regarding the results concerning the participants’ attitudes towards the pupils’ development in different school settings, all three sub-groups belief that pupils with German as first language would develop in a more positive way, compared to pupils without German as first language. Moreover, the migration background of pre-service teachers and parents had a positive influence on the participants’ attitudes.
 

Menstrual Hygiene Management: Challenges and Coping Strategies for Adolescents with Disabilities in the Kumasi Metro of Ghana

Enoch, Acheampong
Nadutey, Alberta
Afful, Barbara Fosua
Anokye, Reindolf
2020

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Purpose: Effective menstrual hygiene management is vital to the health, well- being, dignity, empowerment, mobility and productivity of girls and women. This study was conducted to ascertain menstrual hygiene management challenges and coping strategies of adolescents with disabilities in the Kumasi Metro of Ghana.

 

Method: An exploratory study design with qualitative approach was employed to select 18 participants. Data was collected through in-depth interviews and focus group discussions, and then transcribed and categorised into specific themes.

 

Results: Females with visual impairment had difficulty in maintaining good menstrual hygiene because of problems in detecting menstrual blood, inability to fix sanitary pads appropriately and wash underwear properly, and anxiety and stress from not knowing whether their period has started. The problems of those with physical impairment were related to inaccessible washrooms, long hours of being seated on the part of wheelchair-users, and difficulty in fixing sanitary pads for those with upper limb impairment. For those with hearing impairment, the main challenge was the communication barrier between them and their significant others whenever they needed help.

 

Conclusion: There are common challenges faced by all girls across the globe with regard to menstrual hygiene management. Adolescent females with disability however face additional challenges with regard to MHM. Those with physical disability encounter accessibility challenges, while the main challenge for the deaf and those with speech problems is communication. The visually impaired live in anxiety due to fear of staining their clothes.

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
2020

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The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.

A glimpse into smartphone screen reader use among blind teenagers in rural Nepal

SANKHI, Prakash
SANDNES, Frode Eika
2020

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Purpose

Access to appropriate assistive technology is a challenge worldwide and especially in low GDP-per-capita countries. Nepal is one example of a country with several coinciding challenges: some claim having a high rate of blindness in the general population, a low-GDP-per capita and some studies claim it has a low literacy rate, especially in rural areas. Without appropriate assistive technology, some disabled youth may not get full access to education.

 

Methods

To gain insight into assistive technology use in rural Nepal, five blind teenagers in a mixed secondary school with disabled and non-disabled students in rural Nepal were interviewed about their daily smartphone use.

 

Results

The results show that all the participants used screen readers on donated smartphones. None of the participants had received formal training in using smartphone screen readers and therefore lacked knowledge about basic and essential operational aspects of the devices as well as misguided expectations about the technology.

 

Conclusions

One implication of the findings is that smartphone accessibility features training material needs to be made easily available to schools and all disabled youth worldwide, as smartphones are increasingly becoming available in low-income remote regions with low literacy rates. The built-in accessibility features of smartphones promise disabled youth a non-stigmatizing platform for social participation and access to the information society.

Preparedness of civil society in Botswana to advance disability inclusion in programmes addressing gender-based and other forms of violence against women and girls with disabilities

HANASS-HANCOCK, Jill
MTHETHWA, Nomfundo
MOLEFHE, Malebogo
KEAKABETSE, Tshiamo
2020

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Background: In low-income and middle-income countries women and girls with disabilities are more likely to experience violence than those without disabilities. Non-governmental organisations (NGOs) and disabled people’s organisations (DPOs) can help to address this. However, in countries like Botswana we know little about the preparedness of NGOs and DPOs to increase inclusion in and access to programmes addressing violence.

 

Objectives: To explore the capacity and preparedness of NGOs and DPOs to ensure that women and girls with disabilities can participate in and access programmes addressing violence.

 

Methods: A qualitative study was undertaken using interviews with 17 NGOs and DPOs in Botswana to understand the organisations’ level of and ability to deliver programmes addressing violence against women and girls.

 

Results: Both NGOs and DPOs lack elements of universal design and reasonable accommodation, and thus are inaccessible to some people with disabilities. Some programmes address violence against women but lack skills and resources to accommodate people with disabilities. In contrast, DPOs work with people with disabilities, but lack focus on violence against women with disabilities. Participants identified opportunities to fill these gaps, including adaptation of policies and structural changes, training, approaches to mainstream disability across programmes, development of disability-specific interventions and improved networking.

 

Conclusions: Botswana’s NGOs and DPOs are well positioned to address violence against women and girls with disabilities, but need to increase their accessibility, staff knowledge and skills and disability inclusion. Training, resource allocation and participation of women with disabilities in NGOs and DPOs is needed to drive this change.

 

 

African Journal of Disability, Vol 9, 2020

Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
2020

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Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.

The social and human rights models of disability: towards a complementarity thesis

LAWSON, Anna
BECKETT, Angharad E
2020

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This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

Fragmented yet together: the disability movement in Sierra Leone

VAN DEN BRINK, Amélie
ELBERS, Willem
IBRAHIM, Aisha Fofana
2020

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The on-going struggles of disability movements worldwide have been examined from multiple perspectives. As of yet, however, research into this topic has largely overlooked experiences on the African continent. This article seeks to address this gap by presenting a case study of the disability movement in Sierra Leone, West Africa. The study finds that on the one hand the Sierra Leonean disability movement is fragmented (referring to the tendency of groups to work individually as opposed to operating in a collective manner), thus limiting synergy. Three main ‘centrifugal’ forces underlying fragmentation are identified: resource scarcity, impairment specific interests and capacity differences between impairment types. On the other hand, the movement somehow manages to survive and even achieve modest successes. The research shows that interdependence, shared experiences of marginalization, and a clear identification of the ‘other’ have a unifying effect.

  • The disability movement in Sierra Leone is fragmented, meaning it struggles to formulate a unified position and act collectively, yet somehow survives and even manages to achieve some successes;
  • The fragmentation is fueled by competition between groups, a hierarchy between impairment types and interests that are impairment specific.
  • The movement is kept together by mutual dependence to achieve key goals and raise funds, shared experiences of marginalization and negative experiences with ‘outsiders’.
  • The research offers recommendations to disability groups and donors to mitigate fragmenting forces while strengthening unifying forces.

Access to basic needs and health care for Malawian prosthetic and orthotic users with lower limb physical disabilities: a cross-sectional study

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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The aim of this study was to investigate access for Malawian prosthetic and orthotic users with lower limb disabilities to basic human rights such as health and a standard of living adequate for health, education, work, marrying and establishing a family, and voting. A further aim was to investigate differences among subgroups based on gender, level of income, and residential location.

A cross-sectional design and a questionnaire were used to collect data from 83 participants.

 

Disability and Rehabilitation

https://doi.org/10.1080/09638288.2020.1752316

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