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SOUTH SUDAN. Protection Analysis Update. Protection risks facing persons with disabilities and older persons

GLOBAL PROTECTION CLUSTER, UNHCR
October 2023

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This South Sudan Protection Analysis Update places a thematic focus on protection risks facing persons with disabilities and older persons.

The most recent census reported that 5% of the population in South Sudan, or approximately 424,000 people, were living with a disability. However, the current number is likely to be much higher, possibly reaching 1.2 million people, or 16% of the population, according to the global estimate. Data in South Sudan also suggests a rapid increase in the number of older persons each year, mounting to 5.1% of total population with this percentage expected to continue to steadily increase.

People with disabilities and older people in South Sudan are often excluded and face multiple challenges in accessing essential services and protection. Decades of civil war have increased the number of older people and persons with disabilities who are being left behind as they are unable to flee due to chronic health conditions and mobility impairments. People who have managed to flee the violence are often faced with barriers accessing protection and health services. Therefore, older people with and without disabilities in South Sudan face higher risks and greater challenges in getting the necessary humanitarian assistance.

Accessibility and inclusion for deafblind people living in the Global South

KAMENOPOULOU, Leda
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.
 

A short presentation concerning the challenges surrounding inclusion of and accessibility for deafblind children and adults, particularly in the Global South.

Deafblindness is a spectrum and so a spectrum of approaches and of assistive aids is required. The most common cause of deaf blindness is aging. Most research has been carried out in the Global North. Very little has been carried out in the Global South or into the intersectionality with poverty, race and gender. 

Assistive technology in Korea: Findings from the 2017 National Disability Survey

DANEMAYER, Jamie
LIN, Myung-Joon
July 2023

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Explicitly monitoring the need, use and satisfaction of assistive product (AP) provision is essential to support population health and healthy longevity in ageing/aged countries, like Korea. We present findings from the 2017 Korea National Disability Survey (NDS) on AP access and compare them to international averages, introducing Korea’s data into the wider coherence of global AP research.

 

Disability and Rehabilitation: Assistive Technology

https://doi.org/10.1080/17483107.2023.2225565 

 

Assistive technology access in longitudinal datasets: a global review

DANEMAYER, Jamie
MITRA, Sophie
HOLLOWAY, Cathy
HUSSEIN, Shereen
March 2023

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Functional limitations become more prevalent as populations age, emphasising an increasingly urgent need for assistive technology (AT). Critical to meeting this need trajectory is understanding AT access in older ages. Yet few publications examine this from a longitudinal perspective.

This review aims to identify and collate what data exist globally, seeking all population-based cohorts and repeated cross-sectional surveys through the Maelstrom Research Catalogue (searched May 10, 2022) and the Disability Data Report (published 2022), respectively. Datasets incorporating functional limitations modules and question(s) dedicated to AT, with a wave of data collection since 2009, were included.

 

International Journal of Population Data Science; 2023

Vol. 8 No. 1 (2023): IJPDS Standard Issue
 https://doi.org/10.23889/ijpds.v8i1.1901

Intersectionality Resource Guide and Toolkit. An intersectional approach to leave no one behind

UN WOMEN
UN PRPD
2022

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The Resource Guide and Toolkit has been developed to help both organizations and individual practitioners and experts to address intersectionality in policies and in programmes. It may be used by individuals or teams to assess their own knowledge, attitudes, and practice, at a programme level as a supplement to existing design, adaptation, and assessment processes or at policy level to better understand and address the different and intersecting effects of policy on marginalised persons.

This Resource Guide and Toolkit emerged from an identified need to use an intersectional approach that included people with disabilities in all their diversity in the development, implementation and evaluation of policies, programmes, advocacy and inter-governmental processes. However, the authors and collaborators realised that an effective intersectionality resource needed to go beyond a focus on specific intersecting identities, such as disability and gender, as this would still exclude those who are most marginalised

Inclusive client responsiveness: Focus on people with disabilities and older people

INTERNATIONAL RESCUE COMMITTEE (IRC)
July 2021

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Humanitarian actors recognize the lack of standard practice on the inclusion of older people and people with disabilities in humanitarian response as a current and critical gap in the sector. In recent years, the humanitarian sector has begun to more intentionally address these challenges. In response, the IRC has developed this Inclusive Client Responsiveness Guidance, which aims to address gaps in the IRC’s Client Responsive Programming specifically to strengthen inclusion of people with disabilities and older people. The Guidance consists of three sections to support staff in strengthening inclusion of people with disabilities and older people using the IRC’s Client Responsiveness approach:

Key concepts for designing inclusive feedback mechanisms such as accessibility and reasonable accommodation, to ensure that barriers are addressed, and feedback mechanisms are designed to be accessible to all.

Selection and design of inclusive feedback mechanisms that foster diversity and inclusion.

Monitoring access to feedback mechanisms of people with disabilities and older people through appropriate data collection and analysis.

The guidance also includes a set of resources for practical implementation, which are referenced throughout the document

Perspectives on assistive technology among older Norwegian adults receiving community health services

HALVORSRUD, Liv
HOLTHE, Torhild
KARTERUD, Dag
THORSTENSEN, Erik
LUND, Anne
2021

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Introduction: The western world is seeking increased implementation of assistive technology (AT) to meet the challenges of an ageing population. The objective of this study is to explore perspectives on AT use among home-dwelling older adults with or without cognitive impairment.

 

Methods: This study combines findings from a cross-sectional study with a questionnaire package (n = 83) and from qualitative individual interviews (n = 7) and is part of a larger study, the Assisted Living Project. Combining methods promotes complementary inquiries into a phenomenon.

 

Results: The participants already use ATs: TVs, social alarms, mobile phones, stove timers, electronic med- ical dispensers, PCs and tablet computers. They were both optimistic and skeptical of AT, and expressed different perspectives and expressed different perspectives on ATs in relation to usability, privacy and fear of losing personal face-to-face care.

 

Conclusions: This study reveals that older adults’ perspectives on AT are multifaceted and complex, and can partly be explained by the interacting factors in the HAAT model: person, technology, environment, and context. Further exploration in relation to older adults with health challenges, as well as ethical per- spectives on AT implementation, is required for this group.

Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

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.

Considering age and disability in the Rohingya response

ASSESSMENT CAPACITIES PROJECT (ACAPS)
February 2021

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This report evaluates existing data on the Rohingya refugee response. It highlights the key challenges and constraints faced by persons with disabilities (PwD) and older people in accessing essential services and explores how COVID-19 and related containment and risk mitigation measures have affected humanitarian programming for PwD and older people. It also identifies information gaps and challenges linked to disability prevalence in the camps

 

This secondary data review focuses on the Rohingya refugee camps in Cox’s Bazar and combines publicly available secondary data with 11 key informant interviews conducted with age and disability experts working on the humanitarian response. The interviews took place between 1 July–30 August 2020 with experts from the UN, national NGOs, INGOs, and the International Red Cross and Red Crescent Movement.  

Integrated Emotion-Oriented Care for Older People With ID: Defining and Understanding Intervention Components of a Person-Centered Approach

THALEN, Marloes
VAN OORSOUW, Wietske M W J
VOLKERS, Karin M
TAMINIAU, Elsbeth F
EMBREGTS, Petri J C M
2021

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An increase in descriptive evidence regarding person-centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well-being and quality of life. A specific Dutch example is the Integrated Emotion-Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in-depth understanding of the use of these components in the day-to-day support of older people with ID. A content analysis of five key documents was carried out. Five semi-structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus-group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion-Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion-Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed.

The association between tactile, motor and cognitive capacities and braille reading performance: a scoping review of primary evidence to advance research on braille and aging

MARTINIELLO, Natalina
WITTICH, Walter
2020

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PURPOSE

As the prevalence of age-related visual impairment increases, a greater understanding of the physiological and cognitive capacities that are recruited during braille reading and the potential implications of age-related declines is required.

 

METHODS

This scoping review aimed to identify and describe primary studies exploring the relationship between tactile, motor and cognitive capacities and braille reading performance, the instruments used to measure these capacities, and the extent to which age is considered within these investigations. English peer-reviewed articles exploring the relationship between these capacities and braille reading performance were included. Articles were screened by two researchers, and 91% agreement was achieved (kappa = 0.84 [0.81, 0.87], p < 0.01).

 

RESULTS

 2405 articles were considered of which 36 met the inclusion criteria. Fifteen investigated the relationship between tactile capacities and braille reading performance, 25 explored motor capacities, and 5 considered cognitive capacities. Nineteen instruments were used to measure tactile capacity, 4 for motor dexterity, and 7 for cognitive capacity. These studies focus on younger participants and on those who learned braille early in life.

 

CONCLUSIONS

  • Although this overview underscores the importance of tactile perception and bimanual reading, future research is needed to explore the unique needs of older adults who learn braille later in life.
  • The studies in this review underscore the importance of developing both haptic tactile perception and efficient hand reading patterns early in the braille learning process.
  • Practitioners should consider whether specific pre-braille readiness activities can be used to address the unique needs of older adults who may experience tactile, motor or cognitive declines.
  • Most of the studies in this review require replication before they should serve as reliable clinical guidelines; however, braille reading (like print) is a complex process that draws on multiple capacities that should be developed in unison.
  • The studies in this review focus heavily on younger participants and on those who learned braille early in life, and highlight the need for future research on braille and aging.

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.

Gap Analysis: the inclusion of people with disability and older people in humanitarian response Part 2. Beyond the evidence: Implications for innovation and practice

PRYOR, Wesley
MARELLA, Manjula
ROBINSON, Alex
November 2020

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The first part of the Gap Analysis was published in July 2020, which presented the findings of an academic literature review and grey literature review.

Part 2 of the Gap Analysis presents the insights from individuals working in humanitarian response, disability inclusion and older age inclusion. This report begins by looking at how an agenda for the inclusion of people with disability and older people in humanitarian response has been established. The report then considers the ways in which standards and guidance inform humanitarian practice and the challenges associated with translating commitments into practice. Finally, the report identifies seven areas where there are key gaps and opportunities presenting the potential for innovation in research and practice

If not now, when? Keeping promises to older people affected by humanitarian crises

McGIVERN, Verity
November 2020

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This report looks at the extent to which older people’s rights are being upheld in emergencies and their needs met. The picture it paints is a bleak one. Although some efforts are being made to support older people, overall, the humanitarian system is failing by the standards it has set itself.
 
The report draws on the findings of needs assessments carried out by HelpAge International in the 13 months to the end of 2019. We interviewed 8,883 people aged 50 to 80 - plus affected by natural disasters, conflict or socioeconomic crises in 11 countries in Africa, Asia, Latin America and the Middle East.
 
Since the data was collected, COVID-19 has swept across the globe. The pandemic has both increased the need for humanitarian aid and disrupted its delivery. The response to coronavirus has thrown into stark relief the gulf between the risks older people are facing and the level of support available to them. The findings in this report provide important lessons for improving this response
 

Physical Activity of the Community- Dwelling Elderly Population in Gujarat, India: A Cross-Sectional Study

Patel, Samira Sirajulhak
Gupta, Nalina
Parmar, Lata
2020

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Purpose: While ageing is an inevitable phenomenon of life, physical activity is important for healthy ageing. Compared to the other age groups, older adults throughout the world have the lowest rate of participation in recommended levels of physical activity. This study aimed to investigate the physical activity status of the community-dwelling elderly population in Gujarat, India.

 

Method: This was a cross-sectional study. A door-to-door survey was conducted among selected communities near Vadodara in Gujarat. Based on the inclusion criteria (age≥60years, MMSE-≥24), 347 elderly persons were included in the study. Data was collected using the Global Physical Activity Questionnaire (GPAQ), and analysed using descriptive statistics.

 

Results: Among the 347 older adults (mean age 67.43±7.46 years) who participated in the study, 159 were male and 188 were female. While 125 participants (36%) were physically active at levels recommended by the World Health Organisation, 222(64%) were physically inactive.

 

Conclusion: Only 36% of the participants were physically active as per WHO recommendations. The men were more physically active than the women in the study sample. This study implies that there is a need to create an awareness regarding the importance of physical activity for healthy aging.

Towards more inclusive practices: A Disability, Gender and Age Intersectional Resource

BRIGDEN, Stephanie
AHLUWALIA, Kanwal
2020

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This Disability, Gender and Age Resource aims to support staff to better understand intersectionality. An intersectional approach reminds us of the need to look deeper at the way multiple individual characteristics and societal factors intersect to compound discrimination in any given context. This resouce is split into w main sections:

 

In Section A, we introduce the concept of intersectionality, its use as a lens to understand vulnerability and the relevance of ‘context’. Section A also introduces a few critical concepts: the fact that disability, gender and age are all social constructs, the centrality of power and the need to transform unequal power relations.

 

In Section B, we provide some guidance on inclusion and bias; the need to consider the wider environment; how to work with social norms; how to understand power differently; and empowerment and participation processes.

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