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How do we support women and girls with disabilities to overcome stigma against them? - Evidence brief

MACTAGGART, Islay
FELIX, Lambert
May 2021

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Stigma refers to the labelling of an individual or group of people in a way that ultimately denies them full social acceptance and equality of opportunity, and is often the root cause of discrimination and exclusion experienced by people with disabilities. The negative implications of stigma are far-reaching and profound, including limiting opportunities for accessing health care, education or livelihoods; affecting quality of life  and wellbeing, and increasing the risk of violence and abuse. Stigma is intersectional, meaning that women and girls with disabilities often experience several layers of discrimination, on account of both their disability and their gender. Reducing stigma experienced by women and girls with disabilities is therefore critical to supporting their full inclusion in society on an equal basis as others.

 

Evidence was reviewed and recomendations are provided.

A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System – Child version

AXELSSON, Anna Karin
ULLENHAG, Anna
ÖDMAN, Pia
2021

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Purpose: The aim was to culturally validate a questionnaire about children’s/youth’s participation to be used in a Swedish context.


Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed.

 

Results: The interviews provided support for the questionnaire’s relevance by being a tool to assess important aspects of participation, to gain insights into one’s own/the child’s participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where “parades” are unusual in Sweden and therefore removed, while “singing in choir” was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. 

 

Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children’s participation.

Assessment of functioning and disability in patients with low back pain – the low back pain assessment tool. Part 1: development

IBSEN, Charlotte
SCHIØTTZ-CHRISTENSEN, Berit
NIELSEN, Claus Vinther
HØRDER, Mogens
SCHMIDT, Anne Mette
MARIBO, Thomas
2021

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Purpose: To present the process used to develop the low back pain (LBP) assessment tool including evaluation of the initial content validity of the tool.


Methods: The development process comprised the elements: definition of construct and content, literature search, item generation, needs assessment, piloting, adaptations, design, and technical production. The LBP assessment tool was developed to assess the construct “functioning and disability” as defined by the International Classification of Functioning, Disability and Health (ICF). Involvement of patients and health professionals was essential.

 

Results: The elements were collapsed into five steps. In total, 18 patients and 12 health professionals contributed to the content and the design of the tool. The LBP assessment tool covered all ICF components shared among 63 ICF categories.


Conclusions: This study presents the process used to develop the LBP assessment tool, which is the first tool to address all ICF components and integrate biopsychosocial perspectives provided by patients and health professionals in the same tool. Initial evaluation of content validity showed adequate reflection of the construct “functioning and disability”. Further work on the way will evaluate comprehensiveness, acceptability, and degree of implementation of the LBP assessment tool to strengthen its use for clinical practice.

EDF-IDA workshop on Using the UN Optional Protocols to defend the rights of women and girls with disabilities

SUAREZ, Natalia
PELAEZ NARVAEZ, Ana
May 2021

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Several international human rights treaties exist to protect their rights, such as the UN Convention on the Rights of Persons with Disabilities (CRPD) and the UN Convention on Elimination of All Forms of Discrimination Against Women (CEDAW). These Conventions are complemented by agreements called Optional Protocols. They establish individual complaints mechanism for individuals or groups of individuals who have seen their rights violated in their country.

This online workshop organised on the 10th of May, 2021 jointly by the International Disability Alliance and the European Disability Forum informed participants on the role and functioning of the Optional Protocols, as tools to defend the rights of women and girls with disabilities. Speakers included representatives and legal experts from the Officer of the High Commissioner for Human Rights, the International Disability Alliance, the International Women’s Right Actions Watch Asia Pacific and Validity Foundation. The workshop was introduced and moderated by Ana Pelaez Narvaez, Vice President of the European Disability Forum and member of the CEDAW Committee.

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.

A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Equal access without discrimination - The Right to Disability-Inclusive Health

LIGHT FOR THE WORLD
May 2021

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The right to the highest attainable standard of health is fundamental, as health is a precondition for equal participation in society. People with disabilities continue to experience discrimination, barriers and rights violations in their access to health. This Issue Brief outlines how governments, international organisations and development actors can mainstream disability inclusion into their health strategies, services and interventions.

Disability-related stigma and discrimination in sub-Saharan Africa and south Asia: a systematic literature review

VIRUNDRAKUMAR, Bhavisha
STEPHEN, Kathy
JOLLEY, Emma
SCHMIDT, Elena
May 2021

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This systematic literature review was undertaken to understand the extent, quality and findings of published and unpublished literature on interventions designed to tackle disability-related stigma and discrimination in sub-Saharan Africa and south Asia.

The primary focus of this review was to identify studies that describe the effectiveness of interventions to tackle disability-related stigma and discrimination. The secondary set of objectives focused on understanding the individual, interpersonal, organisational, community and public policy factors that are associated with stigma and discrimination.

Joint submission on promoting and protecting the human rights of women and girls in conflict and post-conflict situations

HUMAN RIGHTS WATCH
HUMANITY & INCLUSION
INTERNATIONAL DISABILITY ALLIANCE
WOMEN ENABLED INTERNATIONAL
WOMEN'S REFUGEE COMMISSION
April 2021

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Joint submission on promoting and protecting the human rights of women and girls in conflict and post-conflict situations on the occasion of the twentieth anniversary of Security Council resolution 1325 by Humanity & Inclusion, Human Rights Watch, International Disability Alliance, Women Enabled International and the Women’s Refugee Commission.

This submission sets out information and recommendations on promoting and protecting the human rights of women and girls with disabilities in conflict and post-conflict situations. Women and girls with disabilities are disproportionately impacted by armed conflicts, yet remain underreported and excluded from peace and security processes. Women and girls with disabilities account for nearly one-fifth of all women and girls worldwide and face multiple and intersecting forms of discrimination based on their gender, as well as their disability. Sustainable peace, recovery and inclusive humanitarian action requires the full, equal and meaningful participation of diverse women, including women and girls with disabilities. The Office of the High Commissioner on Human Rights, in its report, should request member states, the Human Rights Council and its mechanisms, as well as other stakeholders to ensure that monitoring and reporting on the experiences of women and girls in conflicts includes the specific experiences of women and girls with disabilities, and ensure their meaningful participation in conflict prevention, response, peacekeeping and peacebuilding.

Disability and work intensity in Italian households

CALEGARI, Elena
FABRIZI, Enrico
MUSSIDA, Chiara
April 2021

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The 2030 Agenda of the United Nations clearly sets the inclusion of persons with disabilities in the labour market as a main goal. However, especially in care welfare systems characterized by a low level of social services, disability not only impacts the labour market participation of disabled people themselves but may also affect the labour opportunities of other members of their household. Using EU-SILC data to compute individual work intensity-as a better measure of the actual level of labour attainment-this paper aims to disentangle direct and indirect correlations between disability and labour market participation in Italian households.

 

Rev Econ Household (2021).

https://doi.org/10.1007/s11150-021-09559-6

Accessibility audit costing

BROWN, Simon
SCOTT-PARKER, Susan
2021

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This excel sheet provides organisations a structured method to disaplay recommended activities for ensuring accessibility.

First Philippine workplace inclusion forum

PFIP - Philippine Financial and Inter-Industry Pride
J P Morgan Chase and Co
Baker McKenzie
April 2021

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Breakout Sessions were:

Technology for Inclusion

Business Continuity, Resiliency and Inclusivity

Hiring for Diversity and Inclusion

The Language of Inclusion

Towards zero leprosy. Global leprosy (‎Hansen’s Disease)‎ strategy 2021–2030

WORLD HEALTH ORGANISATION (WHO), REGIONAL OFFICE FOR SOUTH-EAST ASIA
April 2021

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The Global Leprosy Strategy 2021–2030 “Towards zero leprosy” was developed through a broad consultative process with all major stakeholders during 2019 and 2020. Valuable inputs were provided by national leprosy programme managers, technical agencies, public health and leprosy experts, funding agencies and persons or members of communities directly affected by leprosy.

The Strategy aims to contribute to achieving the Sustainable Development Goals. It is structured along four pillars:

(‎i)‎ implement integrated, country-owned zero leprosy road maps in all endemic countries;
(‎ii)‎ scale up leprosy prevention alongside integrated active case detection;
(‎iii)‎ manage leprosy and its complications and prevent new disability; and
(‎iv)‎ combat stigma and ensure human rights are respected. Interruption of transmission and elimination of disease are at the core of the Strategy

How to design disability-inclusive social protection

UN Economic and Social Commission for Asia and the Pacific (ESCAP), SOCIAL DEVELOPMENT DIVISION
April 2021

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This is the fifth in a series of policy guides developed to support policymakers and practitioners in Asia and the Pacific in their efforts to strengthen social protection.

This policy guide explains why social protection is important for persons with disabilities 
and introduces key concepts and schemes that are necessary for disability-inclusive social protection.

Musculoskeletal impairment among Syrian refugees living in Sultanbeyli, Turkey: prevalence, cause, diagnosis and need for related services and assistive products

BOGGS, Dorothy
ATIJOSAN-AYODELE, Oluwarantim
YONSO, Hisem
et al
April 2021

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Epidemiological data on musculoskeletal impairment (MSI) and related service and assistive product (AP) needs for displaced populations are lacking. This study aimed to estimate the prevalence, aetiology, and specific MSI diagnosis and the need for related services and APs among Syrian refugees living in Sultanbeyli, a district in Istanbul, Turkey.

A population-based survey used probability proportionate to size and compact segment sampling to select 80 clusters (‘street’) of 50 individuals (aged 2+), for total sample size of approximately 4000 participants. An updated version of the Rapid Assessment of MSI tool (RAM) was used to screen all participants using six questions. Any participant who screened positive underwent a standardised examination by a physiotherapist to assess the presence, aetiology, severity and specific diagnosis of MSI and an assessment of need for related services and APs.

 

Conflict and Health volume 15, Article number: 29 (2021)

https://doi.org/10.1186/s13031-021-00362-9

How to talk to kids about disability inclusion

NANYENYA, Godfrey
April 2021

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Godfrey Nanyenya's work as a disability and inclusion specialist, involves community outreaches in the slum communities of Kampala engaging families raising children with disabilities in physiotherapy and inclusive home schooling. He encourages parents to talk to their children about disability as a normal topic. He suggests ways to approach the subject including: 

  • normalise disability
  • be mindful of language
  • keep it value neutral
  • don't shame them for their questions
  • say I don't know
  • point out similarities
  • make it a continuous conversation

German version of the Chelsea Critical Care Physical Assessment Tool (CPAx-GE): translation, cross-cultural adaptation, validity, and reliability

EGGMANN, Sabrina
VERRA, Martin L
STEFANICKI, Valentine
KINDLER, Angela
SEYLER, Daphne
HILFIKER, Roger
SCHEFOLD, Joerg C
BASTIAENEN, Caroline H G
ZANTE, Bjoern
2021

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Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.


Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.

 

Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.

 

Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

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