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World Report on Hearing

WORLD HEALTH ORGANISATION (WHO)
2021

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The World Report on Hearing (WRH) has been developed in response to the World Health Assembly resolution (WHA70.13), adopted in 2017 as a means of providing guidance for Member States to integrate ear and hearing care into their national health plans.

Based on the best available evidence, this report presents epidemiological and financial data on hearing loss; outlines available cost-effective solutions and sets the way forward through ‘Integrated people-centered ear and hearing care’ (IPC-EHC). The report proposes a set of key H.E.A.R.I.N.G. interventions that must be delivered through a strengthened health system to realize the vision of IPC-EHC. 

The WRH was developed in collaboration with experts and stakeholders in the field of ear and hearing care who informed the report’s strategic direction and ensured that it reflects a range of cultural contexts and approaches to hearing care. The report is global in its reach while keeping a special focus on low- and middle-income countries, where the number of people with hearing loss is not matched by the availability of services and resources.

What Constitutes Good Quality End-of-Life Care? Perspectives of People With Intellectual Disabilities and Their Families

CITHAMBARM, Kumaresan
DUFFY, Mel
COURTNEY, Eileen
2021

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Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.


Methods: The study reported here aimed to nd out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.


Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities.


Conclusion: The fndings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

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.

Inclusive practices for disaster risk management: Experiences with social actors and government entities in Latin America

HUMANITY & INCLUSION (HI)
December 2020

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Twelve inclusive practices are presented that explore the application of the inclusive approach to disaster risk management, thus enriching these and encouraging contributions to create more inclusive and resilient communities! Collecting and sharing inclusive practices is one axis of the project, “Inclusive Disaster Risk Management: An innovative approach towards inclusion of most vulnerable groups”, which aims to disseminate inclusive disaster risk management in Latin American countries in order to increase protection and resilience in high-risk groups. The project accompanies and strengthens regional, national, and local actors from the following countries: Bolivia, Chile, Colombia, Ecuador, Nicaragua, Paraguay, and Peru. This regional initiative for inclusive disaster risk management is led by Humanity & Inclusion (HI), in partnership with Save the Children International Peru (SCI) and Cooperazione Internazionale Paraguay (COOPI).

Insisting on inclusion: Institutionalisation and barriers to education for children with disabilities in Kyrgyzstan

MILLS, Laura
December 2020

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Since 2012, the Kyrgyz government has pledged to close 17 residential institutions for children, including three for children with disabilities. But 3,000 children with disabilities remain in institutions.

This report is based on in-person visits to six institutions for children with disabilities and 111 interviews with children with disabilities, their parents, institution staff, and experts in four regions of Kyrgyzstan. It describes abuses in state care as well as barriers to education that often lead to a child’s segregation in a residential institution or special school, or their isolation at home.

 

 

Children with disabilities. Ensuring their inclusion in COVID-19 response strategies and evidence generation

UNITED NATIONS CHILDREN'S FUND (UNICEF)
December 2020

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Even before the COVID-19 pandemic struck, children with disabilities were among the most disadvantaged, facing increased exposure to abuse and discrimination and reduced access to services in many parts of the world. Understanding these pre-existing vulnerabilities can help anticipate how the COVID-19 pandemic could sharpen existing inequities and can shed light on where targeted efforts may be required.

The publication below draws on pre-COVID data to highlight how children with disabilities face greater risks in the midst of this pandemic. It documents what has happened to services for children and adults with disabilities across the world and includes examples of what has been done to address disruptions in services. It also discusses the challenges in generating disability-inclusive data during the pandemic.

Disability inclusion annual report 2020

UNITED NATIONS RELIEF AND WORKS AGENCY (UNRWA)
December 2020

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The number of Palestine refugees registered by UNRWA recently grew to 5.7 million (from 5.5 million in 2019) in all its five field of operations in Jordan, Lebanon, Syria, Gaza and the West Bank. Among them are Palestine refugees with disabilities, who have long-term impairments, which in interactions with attitudinal, institutional, and environmental barriers prevent their full and effective participation on an equal basis with others in society. Persons with disabilities constitute an estimated 15 per cent of the global population1, and may constitute a higher percentage in humanitarian contexts, such as Syria, the West Bank and Gaza, in particular, which are UNRWA fields of operations.

 

The main actions undertaken in 2020 discussed in the report are:

  • targeted and disability-specific services for persons with disabilities
  • disability inclusion through programmes
  • inter-agency coordination
  • international protection advocacy

Breaking down barriers to travel. Championing disability inclusive and accessible travel

AYLING-SMITH, Verity
December 2020

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Inclusivity is a key element to exceptional travel experiences – enabling individuals all over the world to experience diverse countries, cultures and opportunities. Yet often, disability inclusion is not at the forefront of travel products and services.

This report will support travel providers to understand why disability inclusion matters to the industry whilst celebrating and learning from providers already striving to be more inclusive through their innovative practices

 

To gather stories and examples of best practice from within the travel industry, we developed a “Call for Case Studies” survey which was distributed to both Leonard Cheshire and Expedia Group’s networks. From these submissions, we selected examples which highlighted innovative practice and represented our key themes of the report

People with Physical Disabilities playing Light Volleyball: A Qualitative Study in Hong Kong

Leung, Ka Man
Chu, William
Wong, Ming-Yu
2020

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Purpose: This study aimed at understanding the perceptions of people with physical disabilities regarding playing Light Volleyball (LVB), identifying the possible constraints and risks they might face while playing, and providing their suggestions for fine-tuning the Light Volleyball intervention programmes.

 

Method: Four focus group interviews were conducted with 17 participants who joined the Light Volleyball trial programme. The participants were 11 males and 6 females, with an average age of 53.5 years (SD=11.83 years). People with poliomyelitis (n = 15), spinal cord injury (n = 1), hearing impairment (n = 1) were included.

 

Results: Participants indicated improved reactivity and coordination, cooperation in team, happiness, and novelty in general as positive outcomes while playing Light Volleyball. They preferred to play in the seated position (i.e., sitting light volleyball - SLVB), and with simpler rules. They believed that their ability to play Light Volleyball was subject to their body constraints.

 

Conclusion: Sitting Light Volleyball can be one of the new physical activity options for future sport promotion among people with physical disabilities in the community. The effectiveness of playing Sitting Light Volleyball in enhancing health among people with physical disabilities needs to be studied in future.

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.

Disclosure of Disease among Women affected by Leprosy: A Qualitative Study

Ramasamy, Senthilkumar
Govindharaj, Pitchaimani
Kumar, Archana
Panneerselvam, Suganya
2020

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Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.

 

Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.

 

Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.

 

Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.

Activity Limitation of People Affected by Leprosy in an Endemic District in West Bengal, India

Govindharaj, Pitchaimani
Srinivasan, Sampathkumar
Darlong, Joydeepa
2020

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Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.

 

Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.

 

Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.

 

Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.

Effectiveness of Community-Based Rehabilitation on the lives of Parents of Children with Cerebral Palsy: A Mixed Method Study in Karnataka, India

Bokalial, Doly
Hossain, Forhad Md
Kumar, Senthil N S
Bajracharya, Shristi
2020

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Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.

 

Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.

 

Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.

 

Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.

Disability, Sociodemographics, and Discrimination: A Descriptive Analysis of Household Survey Data from Bangladesh

Ekman, Björn
Borg, Johan
Khan, AHM Noman
Bari, Nazmul
Tanbir, Moin
Emmelin, Maria
2020

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Purpose: Disability affects upwards of one billion people worldwide, the majority of whom live in low- and middle-income countries. Based on survey data from Bangladesh, the aim of the study is to contribute to an improved understanding of the experiences of people with disabilities in terms of discrimination, health, and sociodemographic indicators.

 

Method: A descriptive analysis of data is presented, from a survey implemented in 2016 on a sample of adult persons with disabilities from 18 districts in Bangladesh (n=1,900). The summary statistics of main indicators and correlation analysis of key variables are given.

 

Results: Women comprised around 40% of the sample. The mean age was 36 years (minimum 18 years and maximum 55 years). Women had lower socioeconomic status than men (p<0, 01), were less likely to be well-educated or employed, had worse self-assessed health (p<0, 05), and were less likely to be able to read and write. Men were more likely to have a physical disability than women (p<0, 01). Both women and men reported unmet needs in terms of access to assistive products and not receiving a benefit. Around 40 % of the sample reported having experienced discrimination, with no significant differences between women and men.

 

Conclusion and Implications: Many women and men with disability experience some forms of discrimination, including in matters pertaining to healthcare, education, and employment. Such experiences may have a negative impact on their life chances. However, women and men with a disability differ in several important respects, both in terms of socioeconomic status and types of disability. Such differences need to be considered for effective and equitable policy development.

An AT Innovator case study: Amparo

WILLIAMS, Rhys
OLDFREY, Ben
HOLLOWAY, Catherine
December 2020

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An interview is reported with Lucas Paes de Melo, the CEO of Amparo, to discuss the journey so far of prosthetics company, Amparo. Rather than focus on the product, this insights paper provides an honest reflection of the journey to establishing an assistive technology company and delves into transferable insights. In doing so, they aim to provide insights to help current and future AT entrepreneurs to see behind the curtain of working in this space.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

An overview of assistive technology products and services provided in Malawi

SMITH, Emma M
EBUENYI, Ikenna D
KAFUMBA, Juba
JAMALI-PHIRI, Monica
MACLACHLAN, Malcolm
MUNTHALI, Alister
2020

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Background

Assistive technology is the products and services used by individuals with functional limitations to enable participation in society and realisation of rights afforded by the United Nations Convention on the Rights of Persons with Disabilities. The Assistive Product List is a comprehensive list of products identified as essential for access through universal health coverage. Key stakeholders, including organisations of persons with disabilities, civil service organisations, academic organisations and government ministries are collaborating to integrate assistive technology into policy and develop a priority assistive products list for Malawi.

 

Objective

To understand the organisational characteristics of, and assistive products provided by, key stakeholders working in AT in Malawi.

 

Study Design

Online survey of representatives from key stakeholder organisations.

 

Methods

We surveyed representatives of key stakeholder organisations to gather information regarding assistive technology product and service provision in Malawi. Responses were analysed using counts for closed-ended questions, and conventional content analysis for open-ended questions.

 

Results

A total of 36 of the 50 APL products were provided by eight organisations. Related services were provided for 36 of the 50 APL products by twelve organisations. Five organisations reported providing both products and services. Products and services are largely funded by donation and provided free to those who require them.

 

Conclusion

A range of organisations in Malawi play a role in assistive product delivery and related services. Coordinated AP delivery and service provision is required at a national level which is sustainable and inclusive, and is based on identified needs of the Malawian population.

2020 Harkin International Disability Employment Summit. Realising the value of inclusion

THE HARKIN INSTITUTE
December 2020

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The 2020 Harkin Summit will explore the value of disability inclusion, particularly for businesses and employers. The challenges and opportunities before us today are clear. We must immediately build back the jobs that were lost or put at risk during the COVID-19 pandemic. As we look to the future, we must permanently fix the system so that disability inclusion moves from an aspirational goal to one that is an accepted and valued component of the business strategy.

This year, The Harkin Institute is proud to partner in offering this Summit with Caroline Casey and her organization, The Valuable 500, a business-to-business initiative catalyzing the influence of large private sector corporations in national and international markets.

Reach the furthest behind first: Persons with disabilities must be prioritized in accessing COVID-19 vaccinations

INTERNATIONAL DISABILITY ALLIANCE (IDA)
December 2020

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International Disability Alliance call on all policy-makers and health-care planners in every region and in every country to include persons with disabilities and support networks of their choice in priority groups to receive vaccinations, and to make sure that all persons with disabilities can access vaccinations on the basis of accessible and understandable information, through informed consent

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