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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
English
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
English
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.

Accessibility GO! A Guide to Action, Delivering on 7 accessibility commitments

AL JUBEH, Kathy
DARD, Benjamin
ZAYED, Yana
English
November 2020

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The World Blind Union (WBU) and CBM Global Disability Inclusion have developed Accessibility GO! A Guide to Action. The guide provides practical support on how to deliver a wholistic organisational approach towards accessibility. It describes how to progressively achieve seven core accessibility commitments across built environments, information and communications, procurement of goods and services, training and capacity development, programmes, meetings and events, recruitment, and human resource (HR) management. The guide offers pathways to progressively realise accessibility in various contexts and organisations; recognising that users of the guide will be diverse.

Empowering Women with Disabilities : moving from charity to right based model

Humanity & Inclusion
English
2020

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HI Pakistan has recently completed a UN Women funded project ”Empowering women with disabilities (EWwD)” focusing on the social and economic empowerment of the women with disabilities. The project was implemented at Islamabad capital territory (ICT), Peshawar, Nowshera and Karachi. This project has directly benefited more than 600 women with disabilities , whereas about 30 DPOs and a number of public private departments / institutions have also been engaged and benefitted.

 

HI Pakistan collected the stories of project beneficiaries and published to highlight the impact of the project and to integrate the lesson learnt in program cycle management.

Bridge CRPD-SDGs global training on Article 11

FLEURY, Tchaurea
UJAH, Sulayman AbdulMumuni
English
October 2020

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The IDA-IDDC Bridge CRPD-SDGs Global Training on Article 11 was the first-ever global training initiative on Article 11 of the Convention on the Rights of Persons with Disabilities (CRPD) to bring together Disabled Persons’ Organisations (DPOs) and humanitarian representatives. An outline of the eight day event is given and lessons learnt are reported.

Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
English
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 Data advocacy toolkit

LOCKWOOD, Elizabeth
English
et al
October 2020

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This toolkit was created in response to increasing interest and requests from persons with disabilities and their representative organizations from all over the world. The aim of this toolkit is to contribute to the growing global dialogue on the importance of data on persons with disabilities, specifically to provide some basic knowledge on data collection, analysis, and use of data for evidenced based advocacy to influence policy and decision makers. The toolkit discusses the use of the WG questions as best practices to be employed in data collections and disaggregating data by disability.

Covid-19: Violence risk and loss of income among persons with disabilities

ADD International
English
October 2020

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This report presents findings from telephone interviews with 87 members from Disabled People’s Organisation (DPO) partners and 10 DPO/Self-Help Group (SHG) leaders from organisations with 1,998 members in 10 districts across 7 provinces of Cambodia, to ask about the impact of the COVID-19 pandemic on persons with disabilities.

 

Three patterns emerge from these interviews: there is a pattern of compounding vulnerability to violence; a pattern of significant livelihood loss that is felt differently by disability type and gender; and a link between livelihood loss and pronounced increase in economic and psychological violence against women and girls with disabilities.

 

Evidence from these interviews suggests that, during the COVID-19 pandemic, some women with disabilities are at increased risk of violence and suffering a dramatic loss in household earnings. Reported violence risk increase is mostly psychological and economic, higher among older respondents and most pronounced among those who already experienced medium to high risk of violence before COVID-19.

Action on COVID-19 Evidence on the Response of Disabled People’s Organisations during Pandemic

ADD International
English
October 2020

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In June 2020, ADD International conducted structured interviews with leaders from ten Disabled People’s Organisations (DPOs) which are participating in the Inclusion Works programme in three districts in Bangladesh to understand impact of and response to Covid-19 among DPOs.

 

Evidence from these interviews suggest that the economic impact of Covid-19 on persons with disabilities has been acute, and DPOs are taking critical action. DPOs are engaging with power holders to make relief, livelihood support and information accessible to persons with disabilities. DPOs are in touch with their members, but they face barriers in doing their work during this time, and more could be done to reach the most excluded.

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

BRENNAN, Ciara Siobhan
English
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

Inclusion Counts: Disability Data Tracker. A data collection and advocacy guideline for Organisations of Persons with Disabilities (Spotlight on work and employment)

ADAMS, Lisa
English
October 2020

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This guideline is intended to be a tool for Organisations of Persons with Disabilities (OPDs) and their allies on how to advocate for the rights of persons with disabilities within the global development framework known as the Sustainable Development Goals (SDGs). The guideline is intended to be used as an advocacy tool for OPDs to engage with government, development agencies and other civil society actors on the implementation of the SDGs in line with the UN Convention on the Rights of Persons with Disabilities (CRPD). The thematic focus of this guideline is work and employment. The guideline will explore how the right to work and employment of persons with disabilities can be applied to the SDGs. In particular, this guideline will look at how the rights enshrined in CRPD Article 27 (Work and employment) can be addressed within SDG 8 (Decent Work and Economic Growth). 

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

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

Addressing disability-related costs through social protection systems

COTE, Alexandre
CARRARO, Ludovico
SIJAPATI BASSNET, Bimbika
NASIIR, Mercoledi
SRISOM, Sawang
WAKANIYASI, Josh
O'BRIEN, Felicity
English
October 2020

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Understanding disability-related costs is critical to building social protection systems that truly support inclusion, participation, and sustainable escape from poverty of persons with disabilities across the life cycle. It challenges some usual approaches with regards to targeting, mutually exclusive benefits, and focus on incapacity to work rather than support to inclusion. 

Supporting the dissemination of a background paper, the webinar presented the diversity of disability-related costs and the role of different methods used to assess them. It also presented some practices of accounting for disability costs in the design of mainstream social protection schemes as well as how low and middle-income countries can progressively build the combination of cash transfers, concessions, and services needed to address them.

 

Speakers topics were:

Understanding disability-related costs for better social protection systems.

Accounting for disablity related costs in design of mainstream family assistance schemes, the case of Moldova and Mongolia.

Supporting a survey to estimate the good and services required for basic participation in Indonesia.

How social protection systems can progressively address disability-related costs: the case of Thailand. 

Not either or Disability allowance and economic empowerment in Fiji.

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
English
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

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

FITZSIMONS, Sean
O'NEILL, Emma
CRAWFORD, Alison
English
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

Disability Debrief: an international update on persons with disabilities in the COVID-19 crisis

TORRES FREMLIN, Peter
English
September 2020

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This is an update on disability news around the world relating to the COVID-19 crisis, from late April to the end of September 2020. It's a snapshot of news, statistics, policy, and experiences of persons with disabilities around the world. Links are prvided to the original resources.

 

Topics covered include:

  • What has happended so far: Data on COVID-19 and mortality; Care homes and institutional settings; Impact on persons with disabilities; Gathering data and the gaps; Experiences of Persons with Disabilities
  • Disability in response; International response: Collections of resources; Country and Regional Approaches; Resources by disability
  • Inclusion in protection and interim measures; Masks / face coverings; Physical distancing and isolation; Lockdown and confinement; Institutions and long-term care facilities; Coming out of lockdown; Social protection and services
  • Health, treatment and recovery
  • Across society and sectors: Care; Culture and sport; Digital accessibility and inclusion; Education and young people; Elections and politics; Humanitarian and Refugees; International cooperation; Justice; Mental Health; Transportation and travel; Violence; Water, Sanitation and Hygiene (WASH); Work and skills
  • Rebuilding / what happens next; New perspectives and recovery; Social protection; Work and employment

 

Inclusion of persons with disabilities in social protection for COVID-19 recovery and beyond

COTE, Alex
BALASUBRAMANIAN, Meenakshi
WANGARE, Fatma
HUDA. Karishma
DOS SANTOS, Joaozito
O'BRIEN, Felicity
English
September 2020

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The COVID-19 crisis has magnified the barriers and inequalities faced by persons with disabilities. Consultation with organisations representing persons with disabilities across regions highlighted the limitation of social protection systems in LMICs to provide adequate support due to lack of social protection schemes, low coverage, and inadequacy of existing schemes. There is little in the way of publicly funded community support services and in some contexts an overreliance on residential institutions, whose users have been disproportionally represented among COVID-19 fatalities. 

In the midst of the crisis, countries have been struggling with inaccessible information (e.g sign language), the lack of universal schemes, and national disability registry for broad outreach and fast relief.

The webinar aimed at providing a global overview of the social protection response for persons with disabilities and their families as well as the different key social protection issues to consider for an inclusive COVID-19 recover

Measure It Super Simple (MISS) activity tracker: (re)design of a user-friendly interface and evaluation of experiences in daily life

UMMELS, Darcy
BRAUN, Susy
STEVENS, An
BEEKMAN, Emmylou
BEURSKENS, Anna
English
2020

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Purpose

The purposes of this study were, first, to (re)design the user-interface of the activity tracker known as the MOX with the help of input from elderly individuals living independently and, second, to assess the use of and experiences with the adapted Measure It Super Simple (MISS) activity tracker in daily life.

 

Methods

The double diamond method, which was used to (re)design the user-interface, consists of four phases: discover, define, develop, and deliver. As a departure point, this study used a list of general design requirements that facilitate the development of technology for the elderly. Usage and experiences were assessed through interviews after elderly individuals had used the activity tracker for 2 weeks.

 

Results

In co-creation with thirty-five elderly individuals (65 to 89-years-old) the design, feedback system, and application were further developed into a user-friendly interface: the Measure It Super Simple (MISS) activity. Twenty-eight elderly individuals (65 to 78-years-old) reported that they found the MISS activity easy to use, needed limited help when setting the tracker up, and required limited assistance when using it during their daily lives.

 

Conclusions

This study offers a generic structured methodology and a list of design requirements to adapt the interface of an existing activity tracker consistent with the skills and needs of the elderly. The MISS activity seemed to be successfully (re)designed, like the elderly who participated in this pilot study reported that anyone should be able to use it.

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