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Impact of Covid-19 on the education of children with disabilities in Malawi: results from a survey with parents

MBUKWA-NGWIRA, Jenipher
TANEJA JOHANSSON, Shruti
SINGAL, Nidhi
March 2021

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The overall objective of this study was to examine the impact of school closures due to Covid-19 on the education of children with disabilities attending primary schools. Using phone surveys, 99 parents/carers were interviewed to gain insight into the educational experiences of their children, any barriers faced and their main concerns. All the families had at least one child with a disability in the 6-15 years age group, with approximately six families reporting two or more children with disabilities (though not in the same age range)

Combatting the costs of exclusion for children with disabilities and their families

MONT, Daniel
UNICEF
March 2021

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Compared with other children, children with disabilities are less likely to receive an education, less likely to be employed as adults, more likely to be victims of violence, less likely to start their own families and participate in community events, and more likely to live in poverty. 

The exclusion of children with disabilities affects not only them, but imposes costs on the whole community. If these children lack the opportunity to be productive, society loses out on what they could have produced.  The barriers faced by people with disabilities can also create more responsibilities for their family members, which can limit their opportunities to work or get an education.

Moreover, the impact of exclusion extends beyond the economic cost. If people with disabilities are absent from public discourse, the community cannot benefit from their ideas. If they are excluded from political participation, the government cannot truly represent the interests of all citizens. 

A growing body of research suggests that the costs of exclusion are high. Fortunately, evidence also demonstrates that there are effective ways to ameliorate these costs. A strong case can be made for the social and economic benefits of inclusion. This paper is an effort to begin making that case.

 

Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

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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.

Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study

KRUSE GYLDHOF, Ditte
STAHLHUT, Michelle
EJLERSEN WAEHRENS, Eva
February 2021

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Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.

 

Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.

 

Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.

 

Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.

Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

Altered cervical posture kinematics imposed by heavy school backpack loading: A literature synopsis (2009–2019)

ELLAPEN, Terry J
PAUL, Yvonne
HAMMILL, Henriëtte V
SWANEPOEL, Mariëtte
2021

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Background: Habitual school backpack carriage causes neuro-musculoskeletal vertebral, shoulder and hand pain; deviated posture compromised cardiopulmonary function and proprioception.

 

Objective: Present a novel literature summary of the influence of backpack carriage associated with deviated cervical posture and compromised pulmonary function.

 

Method: An electronic literature appraisal adopting the Preferred Reporting Items for Systematic Reviews, using Google Scholar, Science Direct, EMBASE, AMED, OVID, PubMed and Sabinet search engines, was instituted during 2009–2019. Key search words: schoolbag, backpack, carriage, cervical posture and children. The quality of the studies was assessed using the Downs and Black Appraisal Scale.

 

Results: 583 records were initially identified which was reduced to 14 experimental and observational studies. A total of 1061 participants were included across the 14 studies, with an average age of 11.5 ± 1.3 years, body mass of 37.8 ± 6.6 kilograms (kg), height of 1.41 ± 0.05 meters (m), backpack mass of 5.2 ± 0.9 kg and percentage backpack mass to child’s body mass of 13.75%. The studies mean rating according to the Downs and Black Appraisal Scale was 76.3%. The average craniovertebral angle (CVA) was 53.9° ± 14.6° whilst standing without carrying a backpack was reduced to 50.4° ± 16.4° when loaded (p < 0.05). Backpack loads carried varied from 5% – 30% of the participant’s body mass that produced a mean CVA decline of 3.5°.

 

Conclusion: Backpack carriage alters cervical posture, resulting in smaller CVA and compromised pulmonary function. There is no consensus of the precise backpack mass that initiates postural changes. Girls’ posture begin changes when carrying lighter backpacks as compared to boys of the same age strata.

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.

“It’s not a simple answer.” A qualitative studyto explore how healthcare providers can bestsupport families with a child with autism spectrumdisorder and overweight or obesity

MCPHERSON, Amy C
PEREZ, Arnaldo
BUCHHOLZ, Annick
FORHAN, Mary
BALL, Geoff D C
January 2021

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Purpose: This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs.

 

Methods: Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews.

 

Results: The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child’s complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended.

 

Conclusion: This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness.

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.

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.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Moral distress and ethical decision-making of eldercare professionals involved in digital service transformation

FRENNERT, Susanne
2020

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Aim

Technology affects almost all aspects of modern eldercare. Ensuring ethical decision-making is essential as eldercare becomes more digital; each decision affects a patient’s life, self-esteem, health and wellness.

 

Methods

We conducted a survey and interviews with eldercare professionals to better understand the behavioural ethics and decision making involved in the digital transition of eldercare.

 

Conclusion

Our qualitative analysis showed three recurrent roles among eldercare professionals in regard to digital service transformation; makers, implementers and maintainers. All three encountered challenging and stressful ethical dilemmas due to uncertainty and a lack of control. The matter of power relations, the attempts to standardize digital solutions and the conflict between cost efficiency and if digital care solutions add value for patients, all caused moral dilemmas for eldercare professionals. The findings suggest a need for organizational infrastructure that promotes ethical conduct and behaviour, ethics training and access to related resources.

The case for investing in assistive technology

ATscale
November 2020

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In this new report, ATscale describes the enormous gains that access to assistive technology (AT) can have in health, for the community and the economy. The figures are dramatic: investment in the provision of four assistive products - hearing aids, prostheses, eyeglasses, and wheelchairs - will result in a return on investment of 9:1.

Having access to AT can make the difference between failure or success in school, between a job or unemployment, between a life of opportunity or a life of dependency. An example: for a child in a low- or middle-income country, access to AT can make a difference of $100,000 in lifetime income.

Altogether, providing AT to all who need it would yield more than USD 10 trillion in economic benefits over the next 55 years.

Investing in AT both has a transformative impact on people’s wellbeing and makes sound economic sense for funders and governments. 

Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries

DEAF CHILDREN WORLDWIDE
November 2020

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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.

Topics are:

  • Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
  • Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India). 
  • Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
  • Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
  • Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)

 

 

Life Accomplishment, Social Functioning and Participation of South-Eastern Nigerians with Lower Limb Amputation

Akosile, Olusanjo Christopher
Okonkwo, Arinze Christian
Maruf, Adesina Fatai
Okoye, Chiebuka Emmanuel
2020

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Purpose: For a better understanding of the possible impact of impairments and disabilities on the life of individuals with lower limb amputation,it is important to explore the levels of Life Accomplishment (LA), Social Functioning and Participation (SFP) among them.The present study, set in South-Eastern Nigeria, aimed to study these levels and the influence of selected clinical and demographic variables on these constructs.

 

Method: This cross-sectional survey involved 60 individuals with lower limb amputation (46 unilateral, 14 bilateral) recruited from all the five South-Eastern Nigerian States. The Social Functioning Questionnaire (SFQ), Participation Scale and Life Habit Questionnaire were used for measuring levels of social functioning, social participation and life accomplishment, respectively. Data was analysed using descriptive statistics of frequency count, percentages, mean and standard deviation. Mann-Whitney U and Kruskal-Wallis tests were used to test the hypotheses. Alpha level was set at 0.05.

 

Results: Most of the participants (51.7%-58.3%) had low levels of social functioning across SFQ domains. Most of them (61.7%) had severe participation restrictions, and they all had reduced life accomplishments. Participants with bilateral amputation had poorer levels of social functioning (P<0.0001), participation restriction (P<0.0001), and life habits accomplishment (P<0.0001) than their counterparts with unilateral amputation. Individuals with below-knee amputation had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with above-knee amputation. Participants with prosthetic mobility aids had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with no prosthetic mobility aids. There was no significant difference in the levels of social functioning and participation between male and female participants, but female participants had statistically significant (P<0.0001) higher scores in nine out of twelve life habit domains than their male counterparts.

 

Conclusion and Implications: Low social functioning, severe participation restrictions, and reduced life accomplishments were prevalent among individuals with lower limb amputation, particularly amongthose with bilateral and above- knee amputations. There is a need to routinely evaluate the studied constructs among individuals with lower limb amputation. The provision of prosthetic aids may help to improve their levels of life accomplishment, social functioning and participation.

Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
October 2020

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In order to show the scale and scope of shackling of people with real or perceived psychosocial disabilities worldwide, Human Rights Watch conducted a study of mental health legislation, relevant policies, and practices across 60 countries around the world.

This report includes research and testimonies collected by 16 Human Rights Watch researchers in their own countries. We worked closely with partner organizations to visit private homes and institutions in Afghanistan, Burkina Faso, Cambodia, Ghana, Indonesia, Kenya, Liberia, Mexico, Mozambique, Nigeria, Sierra Leone, Palestine, Russia, the selfdeclared independent state of Somaliland, South Sudan, and Yemen. Human Rights Watch researchers interviewed more than 350 people with psychosocial disabilities, including those who were shackled at the time of research or had been shackled at least once in their lives, and more than 430 family members, caregivers or staff working in institutions, psychiatrists, psychologists, nurses and other mental health professionals, faith healers, lawyers, government officials, representatives of local nongovernmental organizations (NGOs), including organizations of persons with disabilities, and disability rights advocates. The testimonies were collected between August 2018 and September 2020 through in-person and phone interviews.

Desk research and consultation with international disability experts was also undertaken

Disability rights during the pandemic. A global report on findings of the COVID-19 Disability Rights Monitor

BRENNAN, Ciara Siobhan
October 2020

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This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

 

A webinar was held to mark the launch of the report

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

The hidden impact of COVID-19 on children and families with disabilities.

ORSANDER, Martina
MENDOZA, Pamela
BURGESS, Melissa
ARLINI, Silvia Mila
October 2020

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This report is one in a series presenting findings from the Global COVID-19 Research Study on The hidden impact of COVID-19 on children. The results presented here focus on the impacts of COVID-19 on children and parents/caregivers with disabilities and their families, drawing on data from our representative sample of 17,565 parents/ caregivers and 8,069 children in our programme participants group. Topics covered include impacts of COVID-19 on household economy, health and nutrition, child education and learning, child rights, relationships between children and their parents/caregivers, psychosocial wellbeing, family separation and household violence.

The research was implemented in 46 countries in June and July 2020 and resulted in the largest and most comprehensive survey of children and families during the COVID-19 crisis to date, with 31,683 parents/ caregivers and 13,477 children aged 11–17 participating in the research. The research sampled three distinct population groups:

1. Save the Children programme participants;

2. Specific population groups of interest to Save the Children;

3. The general public.

A representative sample of Save the Children programme participants with telephone numbers or email addresses was obtained in 37 countries.

 

A GLOBAL RESEARCH SERIES

The impact of COVID-19 on disabled people in Northern Ireland

FITZSIMONS, Sean
O'NEILL, Emma
CRAWFORD, Alison
September 2020

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Key findings and recommendations are reported from an online survey published in April 2020 to gather the experiences of disabled people, their families and carers during the COVID-19 outbreak in Northern Ireland. The survey went live on April 1st 2020 and closed on April 30th 2020.  Over 400 survey responses were received, including over 1300 written statements. 

Key findings are reported in the areas of: social care; physical health; mental health and emotional wellbeing; carers; accessing food and medicine; accessing information; employment and training; social security benefits and community support

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