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Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

VON GRANITZ, Heléne
SONNANDER, Karin
REINE, Ieva
WINBLAD, Ulrika
2021

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Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concern- ing Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote par- ticipation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD).

 

Methods: Register data and data from two questionnaires were used (N1⁄42565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015.

 

Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older peo- ple, and for a particular person category.


Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclu- sion due to fewer activities representing an active life. An increase on average of 16h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.

Psychosocial Consequences of COVID-19 on Persons with Visual Impairments

NAYAR, Mahima
JUVVA, Srilatha
LAKSHMAN, Chitra
2021

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The ongoing pandemic situation has disrupted lives globally. These disruptions are embodied in gender, social location, ethnicity and in the body. Public health facilities, accessibility of urban infrastructure, support services for persons with disability, educational accessibility in cities prior to the pandemic have influenced the manner in which disabled people are able to adapt to the current situation. This paper presents the experiences of young people living with visual impairments who reside in an urban low-income community in India. It explores the unique challenges such as the further reduction in accessibility to health and educational facilities that they are facing and the manner in which their carefully structured everyday lives have changed. The narratives also describe the manner in which they are coping with the public health disaster in addition to preparing for the new ‘norms’ that people living with visual impairments are required to navigate as an outcome of the pandemic. The paper gives voice to their needs and requirements in this situation, and in turn, aims to inform policy responses through first person accounts. 

Impact of Visual Impairment and Correction on Vision-Related Quality of Life: Comparing People with Different Levels of Visual Acuity in Indonesia

WIDAGDO, T M M
RAPPUN, Y
GANDRUNG, A V
WIBOWO, E
2021

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Purpose: This study assessed the extent to which visual impairment impacts on vision-related quality of life in Indonesia, by comparing four groups of people: those with 1) normal vision, 2) corrected visual impairment, 3) uncorrected visual impairment, and 4) blindness.

 

Method: Purposive sampling was used. There were 162 respondents, between 21 and 86 years of age. Participants with normal vision and blindness were community-dwellers in Yogyakarta, Indonesia. Those with corrected and uncorrected visual impairment were recruited from an eye clinic. This cross- sectional study used NEI VFQ-25 to assess vision-related quality of life. The total scores and 11 NEI VFQ-25 subscales scores of four respondent groups were analysed using ANOVA, followed by post-hoc analyses to reveal between group differences.

 

Results: There was a significant difference in the NEI VFQ-25 total scores among the four respondent groups. Respondents with normal vision had the highest score and those with blindness had the lowest. There were also significant differences among the four groups for the 11 subscales. Post-hoc analyses revealed no significant difference between respondents with normal vision and corrected visual impairment in the total and 9 NEI VFQ-25 subscales. Respondents with uncorrected visual impairment and blindness had significantly lower vision- related quality of life compared to those with normal vision or corrected visual impairment in the total and 5 NEI VFQ-25 subscales, indicating that visual impairment decreases vision-related quality of life.

 

Conclusion: Visual impairment has a detrimental impact on a person’s vision- related quality of life. The negative impact of visual impairment can be minimised by correction. Failure to correct visual impairment leads to significantly lowervision-related quality of life.

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Multifaceted interventions for supporting 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.

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).

 

Campbell Systematic Reviews. 2020; 16:e1092.

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

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

Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

What is good personal assistance made of? Results of a European survey

MLADENOV, Teodor
2019

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This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance

HULTMAN, Lill
FORINDER, Ulla
FUGL-MEYER, Kerstin
PERGERT, Pernilla
2018

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This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.

Aligning with the flow of control: A grounded theory study of choice and autonomy in decision-making practices of people with intellectual disabilities

CAREY, Eileen
2018

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Purpose: Choice and autonomy are recognized as values facilitating genuine self- determination. Subsequently greater understanding of these concepts in decision-making practices of adults with intellectual disabilities is required.

 

Aims: The twofold aim of this research study was to ascertain the core concern (most important issue) for adults with intellectual disabilities as they make choices and exercise autonomy and to develop a theory explaining how these adults attempt to resolve their core concern.

 

Methods: This research study undertaken in a single organization in the Republic of Ireland applied classic-grounded theory methods. Participants included twelve adults who were attending day services and accessing a variety of other organizational services. Interviews were undertaken, between January 2012 and September 2013, in different contexts on up to 4 occasions (46 interviews). Data analysis utilized concurrent processes of constant comparative analysis.

 

Results: The main issue of concern for these participants was ‘control’ in environments that were controlling of them and they responded by ‘aligning with the flow of control’ explained by how they framed control, emotionally connected and adjusted in compliance situations.

 

Conclusions: This theory offers a conceptual delineation of the way adults with intellectual disabilities manage the daily tensions and harmonies in decision-making.

How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study

LUYTEN, Tom
BRAUN, Susy
JAMIN, Gaston
VAN HOOREN, Susan
DE WITTE, Luc
2017

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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.

Social inclusion, care and belonging of children with spina bifida: perspectives from Uganda

BANNINK, Femke
February 2017

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This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalisation and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida


Afrika Focus, vol 30, no. 1, 2017,  pp. 130-136

DOI https://doi.org/10.21825/af.v30i1.4984

 

As the movement for cash transfer programming advances, how can we ensure that people with disabilities are not left behind in cash transfer programming for emergencies?

REDUC, Marie
PLA CORDERO, Ricardo
et al
December 2016

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A short review of the literature was carried out which derived some specific recommendations with regards to the needs of people with disabilities in cash transfer programming in the braod categories of: appropriate beneficiary targeting and assessment; accessibility of training and sensitisation materials; physical and sensorial access to markets, vendors and distributions points (including ATM); access to activities in cash for work; accessibility of technology; access to lost goods and services

Twenty-five years of Community Living: Changes in Support Staff Perceptions

Wark, Stuart
Bleechmore, Kathleen
2015

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Purpose: The attitudes of support staff towards people with intellectual disability can greatly impact upon an individual’s quality of life and level of social inclusion. However, there are few studies that examine how perceptions and beliefs have changed within one organisation over the past few decades; a period during which there have been major social and government policy changes including deinstitutionalisation, inclusive education and the introduction of the United Nations Convention on the Rights of Persons with Disabilities. In conjunction with a 25th anniversary review of a community-living project in rural Australia, the current research replicated a study from 1987 that examined attitudes of staff with respect to people with intellectual disability, and thematically compared the findings of the two questionnaires.

 

Method: In 1987, a purpose-designed questionnaire was developed and completed by 15 direct care staff. This 10-item tool asked for basic demographic information and for the participants’ perceptions of people with intellectual disability and their own work roles in the disability sector. This tool was replicated in 2013 and was again completed by 15 direct care staff from the same organisation.

 

Results: The thematic analysis indicated a number of differences between the 1987 and 2013 cohorts in regard to their attitudes. The wide acceptance of the rights of people with intellectual disability was one key change. There was an age separation found within the 2013 cohort, with older participants (> 50 years of age) more likely to display similar attitudes to the 1987 group than the younger participants (<30 years old). Dealing with the problem of ageing-related issues, something that was not obvious 25 years ago, was now considered of major importance. There was evidence that disability support was increasingly recognised as a valid career choice, with a substantial difference in motivation found between the two age groups. Across both cohorts, direct exposure to the realities of the job was seen to be the best training for new employees.

 

Conclusions: The past 25 years have seen positive developments in both social acceptance and expectations for people with disabilities. Individuals are now viewed in a realistic but more positive light. As an exemplar of this change, concerns about individuals entering a consenting sexual relationship have changed dramatically, and what was once an issue of major concern is now no longer raised. While the training provided to staff has changed significantly over the past 25 years, on-the-job exposure to people with intellectual disability, combined with support from peers, is still perceived as vital for developing a quality support network.

The African disability scooter: efficiency testing in paediatric amputees in Malawi

BECKLES, Verona
MCCAHILL, Jennifer L
STEBBINS, Julie
MKANDAWIRE, Nyengo
CHURCH, John C T
LAVY, Chris
2014

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Purpose:

The African Disability Scooter (ADS) was developed for lower limb amputees, to improve mobility and provide access to different terrains. The aim of this study was to test the efficiency of the ADS in Africa over different terrains.

 

Method: 

Eight subjects with a mean age of 12 years participated. Energy expenditure and speed were calculated over different terrains using the ADS, a prosthetic limb, and crutches. Repeated testing was completed on different days to assess learning effect. 

 

Results:

Speed was significantly faster with the ADS on a level surface compared to crutch walking. This difference was maintained when using the scooter on rough terrain. Oxygen cost was halved with the scooter on level ground compared to crutch walking. There were no significant differences in oxygen consumption or heart rate. There were significant differences in oxygen cost and speed between days using the scooter over level ground, suggesting the presence of a learning effect. 

 

Conclusions:

This study demonstrates that the ADS is faster and more energy efficient than crutch walking in young individuals with amputations, and should be considered as an alternative to a prosthesis where this is not available. The presence of a learning effect suggests supervision and training is required when the scooter is first issued.

Perceived Needs Related to Social Participation of People with Leprosy-related Disabilities and other People with Disabilities in Cambodia: A Qualitative Study

HEEREN, Marie-Julie J
KY, Lai
VAN BRAKEL, Wim H
2014

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Purpose: The objective of this study was to describe the similarities and differences in perceived needs related to social participation of persons with leprosy-related disabilities and other persons with disabilities in Cambodia, and to suggest key interventions to promote participation in the community.

 

Methods: A cross-sectional study was conducted. People with leprosy-related disabilities were selected at home during field visits or at the rehabilitation centre for people with leprosy in Phnom Penh. People with locomotor disabilities were selected at the rehabilitation centre for persons with disabilities in Phnom Penh and Prey Veng. A pilot-tested, face-to-face semi-structured interview, with open and closed questions, and focus group discussions were used to investigate the perceived needs related to social and economic participation in the community. The interview was based on the International Classification of Functioning, Disability and Health (ICF) model of the WHO.

 

Results: Both groups of people with disabilities struggle with social exclusion in society. People with leprosy-related disabilities, in particular, live below the poverty line of US$ 0.5 per day. Most of the participants lived in rural areas. Participants raised the need for enhanced self-esteem and help in finding jobs. To overcome the difficulty in finding employment, they felt vocational training and microcredit to start businesses, were required.  

 

Conclusions: The study found that both groups of people with disabilities have similar needs to improve participation in social and economic life. Rehabilitation centres provide vocational training and microcredit. Self-help groups have also proven effective in reaching poor people with disabilities in rural areas and improving social participation. The authors suggest that it is best to form multi-disability self-help groups to empower all the affected people and help fight poverty. 

 

 

Disability, CBR & Inclusive Development Journal, Vol 25, No 3

The psychosocial impact on standing devices

NORDSTRÖM, Birgitta
NYBERG, Lars
EKENBERG, Lilly
NÄSLUND, Annika
2013

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Purpose:

The aim of this study was to explore the psychosocial impact of standing devices as experienced by users. 

 

Method:

This is the second part of a comprehensive survey in five counties in Sweden where all the subjects with standing devices were invited to participate. The impact of standing devices on functional independence, quality of life and wellbeing was assessed using a questionnaire, Psychosocial Impact of Assistive Devices Scale (PIADS).

 

Results:

The psychosocial impact of the standing devices was perceived as positive. The highest PIADS scores in relation to age were found in the oldest group, aged 65 years and older. The ability to walk and independence in ambulation resulted in higher scores than the use of a wheelchair and/or dependence on others. Those who stood often awarded higher scores in the PIADS questionnaire compared to those who used the device less frequently. When standing was integrated in various activities, its psychosocial impact received high scores. 

 

Conclusion:

The psychosocial impact of standing devices was generally experienced positively. The main results indicated that standing in a standing device had a value and we as professionals should ask the users about the intended purpose of their standing in order to prescribe the optimal device.

The equal rights review : volume nine

PETROVA, Dimitrina
Ed
2012

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The Equal Rights Review (ERR) is an interdisciplinary biannual journal intended as a forum for the exchange of legal, philosophical, sociological and other ideas and practical insights for those who are promoting equality. This issue contains a special section on disability equality, as well as an interview on the same issue with Hiroshi Kawamura, Founder and President of the DAISY Consortium, Japan, and Kapka Panayotova, Director of the Centre for Independent Living in Sofia, Bulgaria
The Equal Rights Review, Vol Nine

Hansen's disease recoverers as agents of change : a case study in Japan

HOSODA, Miwako
March 2010

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"This manuscript addresses the role and contribution of people affected by Hansen's disease (leprosy), especially through the efforts of Zen-Ryo-Kyo, the National Hansen's Disease Sanatoria Residents' Association, in changing laws and attitudes in Japan since the 1950's. Health social movements are discussed in the Japanese context and more broadly. An important contribution of this manuscript is the explanatory description of the activities of Zen-Ryo-Kyo in achieving change through addressing issues related to social stigma and discrimination"
Leprosy Review, Vol 81, Issue 1

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