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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.  

Age and disability inclusion needs assessment [Cox's Bazar, Bangladesh] - Preliminary findings

REACH
February 2021

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General objective - To support key actors working in Cox’s Bazar, including coordination bodies and technical agencies and actors, to consider the nuanced and specific needs, access to services and assistance, and involvement of persons with disabilities (PwD) across all age groups, and older persons living in Rohingya camps, within the response programming.

 

Specific objectives -

To understand the prevalence of different kinds of disability, across different ages, gender and location.

To increase the understanding of the situation of PwD, of different ages, in relation to their access to multi-sectoral services and participation in the community.

To understand specific considerations of older persons and PwD related to disaster preparedness and risk reduction.

 

Assessment components:

1. Household survey: Quantitative household survey covering all 34 camps, and collecting data on all individuals aged 2 and above in each sampled household

2. Focus group discussions (FGDs): The household survey was complemented by 20 FGDs conducted with the affected populations between 12 January and 8 February 2021:

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.

Physical Activity, Enjoyment and Quality of Life among Institutionalised Older Adults in Malaysia: A Cross-Sectional Study

KUTTY, Nizar Abdul Majeed
JABBAR, Mohammed Abdul Razzaq
NG KYLIE
2020

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Purpose: In many nations across the world it has become a priority to stimulate increased physical activity (PA) among elderly persons.  This study aimed to find the association between physical activity patterns and enjoyment of physical activity and health-related quality of life (HRQoL) among institutionalised older adults in Malaysia.

 

Method: A sample of institutionalised older adults (n=134, mean age = 73.72; SD = 8.59) was recruited from the Klang valley in Malaysia. In cross-sectional analyses, their physical activity, enjoyment of physical activity and quality of life were screened using the Physical Activity Scale for the Elderly, the 8-item Physical Activity Enjoyment Scale and the EuroQuol-5 Dimensions-5 Levels questionnaires, respectively. High levels of physical activity were associated with enjoyment of physical activity and health-related quality of life.

 

Results: In total, 41% of the participants met the guidelines of the Physical Activity Scale for the Elderly and 53% enjoyed physical activity. A positive correlation was found between the level of physical activity and its enjoyment (rs = .355, p <.001). Significant correlations were recorded between the dimensions of health-related quality of life and the level of physical activity (p < 0.001), except for pain/discomfort and anxiety/depression.

 

Conclusion: Providing opportunities for institutionalised older adults to engage in a variety of activities might help them to identify the kind of physical activity they enjoy and facilitate a lifelong physical activity routine.
 

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
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.

Does the purpose matter? A comparison of everyday information and communication technologies between eHealth use and general use as perceived by older adults with cognitive impairment

JAKOBSSON, Elin
NYGÅRD, Louise
KOTTORP, Anders
OLSSON, Cecilia Bråkenhielm
MALINOWSKY, Camilla
2020

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Background and objective

Everyday information and communication technologies (EICTs) are increasingly being used in our society, for both general and health-related purposes. This study aims to compare how older adults with cognitive impairment perceive relevance and level of EICT challenge between eHealth use and general use.

 

Methods

This cross-sectional study includes 32 participants (65–85 years of age) with cognitive impairment of different origins (due to e.g., stroke or dementia). The Short Everyday Technology Use Questionnaire+ (S-ETUQ+) was used, providing information about the relevance of EICTs and measuring the EICT level of challenge. Data were analysed with descriptive statistics, standardized z-tests and Fisher’s exact tests. The significance level was set to p < .05.

 

Results

The result shows that the perceived amount of relevant EICTs for eHealth use was lower in all 16 EICTs compared to those of general use. About the perceived level of challenge, a significant difference was detected in one of the seven included EICTs between eHealth use and general use.

 

Conclusions

In this sample, all EICTs were perceived as having lower relevance for eHealth use compared to general use, suggesting that the purpose of using an EICT affects the perceived relevance of it. Also, once an EICT is perceived as relevant and used for eHealth purposes, there seem to be little to no differences in perceived challenge compared to the same EICT used for general purposes.

Novel lateral transfer assist robot decreases the difficulty of transfer in post-stroke hemiparesis patients: a pilot study

KOYAMA, Soichiro
TANABE, Shigeo
OTAKA, Yohei
KATO, Tomoya
FURUZAWA, Shotaro
TATEMOTO, Tsuyoshi
KUMAZAWA, Nobuhiro
YOSHIMUTA, Hiroshi
TORII, Katsuhiko
TSUKADA, Shingo
SAITOH, Eiichi
et al
2020

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Purpose

The purpose of this study was to clarify whether the novel lateral transfer assist robot facilitates easier transfers compared with a wheelchair in post-stroke hemiparesis patients.

 

Methods

This cross-sectional study enrolled 20 post-stroke hemiparesis patients, and the task difficulty of transfers was compared between a wheelchair and lateral transfer assist robot. All participants were asked to transfer from either wheelchair or lateral transfer assist robot to a platform table and back. The primary outcome was the transfer score of the Functional Independence Measure. The secondary outcome was the time required for transfer.

 

Results

The transfer score of the Functional Independence Measure was significantly higher with lateral transfer assist robot than with wheelchair (p < .001). The transfer times from these devices to a platform table and back showed no significant differences (to device from platform table: 7.8 s, lateral transfer assist robot vs 7.6 s, wheelchair, p > .05: device to platform table: 7.1 s, lateral transfer assist robot vs 8.0 s, wheelchair, p > .05).

 

Conclusions

Transfer with a lateral transfer assist robot is easier than with wheelchair and facilitates independence in post-stroke hemiparesis patients.

The value of powered mobility scooters from the perspective of elderly spouses of the users – a qualitative study

FREDRIKSSON, Carin
PETTERSSON, Ingvor
HAGBERG, Lars
HERMANSSON, Liselotte
2020

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Purpose

To explore spouses’ experiences of the value of mobility scooters prescribed to their partner.

 

Material and Methods

A descriptive design with a qualitative approach was used. Thirteen spouses (11 females) aged 65–86 years participated. Semi-structured interviews were conducted when the spouse’s partner had had the mobility scooter for 4–6 months. The interviews were analysed using qualitative content analysis.

 

Results

The interviews showed primarily that the spouses experienced that their everyday lives and life situation had improved since their partner had received a mobility scooter. They reported that they could engage in activities of their own choice to a greater extent. The prescription of a mobility scooter to their partner had also yielded a sense of freedom related to shared activities. On the other hand, the spouses described some of the scooter’s limitations. Three categories emerged: a sense of freedom related to the spouse’s own activities, a sense of freedom related to shared activities and a somewhat restricted freedom.

 

Conclusion

Prescription of a powered mobility scooter was of value to the users’ spouses because it facilitated independent and shared activities and participation in the community. The value was mainly expressed as a sense of freedom when doing things on their own or together with their partner. Spouses are key persons in the rehabilitation of people with mobility restrictions. Their views on the assistive device may influence the rehabilitation process. Knowledge of spouses’ experiences is thus crucial, as this may influence the future rehabilitation outcome.

A person living with dementia learning to navigate an iPad: a case study

INGEBRAND, Elias
SAMUELSSON, Christina
HYDÉN, Lars-Christer
2020

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Purpose

This study challenges the notion that people living with dementia are unable to achieve novel learning without focussed intervention techniques. The purpose of this study is to explore how a woman living with dementia (Alzheimer’s disease) learns to use a tablet computer with support from communicative partners.

 

Method

The study is based on video recordings and the theoretical framework of learning as changing participation in joint activities. Quantitative and qualitative focus is on changes in the interactional organization over the course of six weeks in the activity of using an augmentative and alternative communication application.

 

Results

Over time, the participant living with dementia, relies less on the expertise and explicit instructions of her communicative partners when navigating the application, and more on the immediate feedback provided by the tablet computer.

 

Conclusions

The findings suggest that novel learning still is possible for people living with dementia, even without the implementation of focussed interventions. This study further emphasizes the procedural nature of learning for people living with dementia as the woman’s embodied actions were carried out in an increasingly more direct fashion.

Gap Analysis: the inclusion of people with disability and older people in humanitarian response

ROBINSON, Alex
MARELLA, Manjula
LOGAM, Lana
July 2020

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To build the evidence base on inclusion, and inform our priorities for innovation, the Elrha Humanitarian Innovation Fund (HIF) commissioned a Gap Analysis on the Inclusion of People with Disability and Older People in Humanitarian Response. This is the first of two reports from the Gap Analysis and summarises findings from the literature review components of this work. The Gap Analysis has been led by the Nossal Institute for Global Health at the University of Melbourne. The Nossal Institute team was supported by Arbeiter-Samariter-Bund’s Office for Indonesia and the Philippines (ASB) in the review of grey literature.  This report begins by outlining the approach taken to the academic and grey literature reviews. This is followed by an overview of findings, which maps evidence from different sectors against thematic areas based on the Humanitarian Inclusion Standards for Older People and People with Disabilities (HIS).

 

Supplementary information is available as a separate accompanying annex. The annex includes a summary of each article identified in the review arranged by HIS and sector; graphs showing the distribution of articles, including by year, humanitarian context, and geographical region; and a list of guidelines on the inclusion of people with disability and older people in humanitarian response

Access to age-assistive technology: A resilience building measure for older people

HISCOCK, Diana
MALIK, Deepak
June 2020

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The intersection between age, gender and disability and the use of assistive technology (AT) by older people, in emergency response and as a tool for disaster risk reduction (DRR) is explored. The report shows that AT can have a positive impact on independence, vulnerability reduction and resilience building for older women and men in humanitarian crises. This report urges for sensitization and capacity building of humanitarian organizations for the inclusion and promotion of assistive product (AP) provision in humanitarian response and offers insight into key areas to enable AT provision to successfully meet the needs of older people.

 

The study employed primary research methods to gather both quantitative and qualitative information through a semi-structured survey with HelpAge programme beneficiaries in five countries: Bangladesh, Indonesia, Myanmar, Nepal and Pakistan. The survey incorporated the Washington Group short set of questions (WGQs), designed to identify people with functional difficulties in six core functional domains: mobility, vision, hearing, cognition, self-care and communication (Washington Group on Disability Statistics, 2016). The report also summarises secondary research including a literature review, information from rapid needs assessments carried out by HelpAge, and maps out relevant policy changes which have led to better recognition of the intersectionality and importance of AT for older men and women.

Significant challenges when introducing care robots in Swedish elder care

JOHANSSON-PAJALA, Rose-Marie
GUSTAFSSON, Christine
2020

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Introduction: 

Care robots are machines, operating partly or completely autonomously, that are intended to assist older people and their caregivers. Care robots are seen as one part of the solution to the aging population, allowing fewer professional caregivers to provide the necessary assistance and care. Despite the potential benefits, the dissemination of care robots, and welfare technology in general, is limited in Swedish elder care.

 

Purpose: 

To explore the challenges of introducing welfare technology, particularly care robots, in elder care.

 

Materials and methods:

 Twenty-one individual interviews with key actors at the societal level, analysed by thematic analysis.

 

Results: 

The challenges, from the societal actors’ perspectives, were related to; the beliefs in technology, attitudes, ethics, collaboration, and the need for knowledge and skills regarding care robots (individual and group challenges). Challenges of a national character were: national governance, infrastructure, laws and regulations, economics, and procurement (systemic and societal challenges). In addition, the necessary preconditions for successful introduction were revealed as: the utility of the technology, implementation, evaluation and safety, security, and integrity (preconditional challenges).

 

Conclusions: 

The introduction of care robots in elder care services seems to be more challenging than that of welfare technology in general, given the context and prevailing attitudes and preconceptions about robotics. Significant challenges need to be managed, at all levels of the society, before care robots can become an integral part of daily care and assist older people and their caregivers in activities and rehabilitation.

Multifaceted interventions show limited impact on community participation among adults with disabilities

GROSS, Judith
MONROE-GULICK, Amalia
DAVIDSON-GIBBS, Debbie
NYE, Chad
June 2020

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This Campbell systematic review and meta-analysis examines the impact of multifaceted interventions on community participation outcomes for adults with disabilities, and aims to find effective components of the interventions. The review summarizes the findings from 15 reports of multifaceted interventions in five countries (USA, China, Germany, Italy, Australia) with the majority from USA (10).

Included studies employ at least two interventions designed to address two or more participant characteristics (e.g., skill enhancement, behavior/attitude change) and/or environmental characteristics (e.g., participant interactions with people, places, or things) resulting in outcomes that provide direct access to the community (e.g., competitive employment, adult learning, housing) or are a dimension of community participation (e.g., self-determination, quality of life, social networking).

A total of 15 studies using a multifaceted intervention were included in this review. Of these, nine were randomized and six were quasi-experimental. Study participants were adults, 18 years or older, with a disability, who had exited secondary school services. Participants identified as having the following disabilities: intellectual disability, mental illness, traumatic brain injury, aging-related disabilities (e.g., dementia, Alzheimer’s, reduction in activities of daily living), or combinations of two or more classifications.

 

Campbell Systematic Reviews. 2020;16:e1092.

https://doi.org/10.1002/cl2.1092

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