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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.

Physical environments and community reintegration post stroke: qualitative insights from stroke clubs

BROOKFIELD, Katherine
MEAD, Gillian
2016

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This study investigated the environment’s role in community reintegration amongst persons with experience of stroke. Focus group discussions with 29 individuals recruited from community stroke clubs in Scotland revealed that stroke influenced a person’s perceptions, experience, use and enjoyment of the environment. Multiple specific (e.g. theatres, cafes) and more general (out-of-the- home) environments appeared capable of supporting community reintegration, providing settings in which individuals were able and willing to interact with others and participate in various functional, social and recreational activities. The article reflects on the study’s implications for policy and practice.

Confessions of an inadequate researcher: space and supervision in research with learning disabled children

BENZON, Nadia von
2016

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Location is often at the fore of decision-making regarding fieldwork and choice of methods. However, little research has directly discussed the importance of the choice of site in the production of research data, particularly concerning the way that different relationships will manifest between researcher and participant in different spaces. Site may be particularly important in research with (learning disabled) children, as research location is intertwined with the level of caregiving required from the researcher, and the sorts of surveillance the research engagement may be subject to. This paper draws on research with learning disabled 6–16-year olds that took place in homes, schools and the outdoors, in a variety of microgeographical locations from bedrooms to nature reserves. This paper reflects on the challenges, including the very ‘worst’ research moments, occurring in the different research environments. Whilst the research was carried out with learning disabled children and young people, the discussion has implications for research with non-disabled children and ‘vulnerable’ participants more broadly.

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

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David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

Ethical and methodological issues in research with Sami experiencing disability

MELBØE, Line
HANSEN, Ketil Lenert
JOHNSEN, Bjørn-Eirik
FEDREHEIM, Gunn Elin
DINESEN, Tone
Minde, Gunn-Tove
RUSTAD, Marit
2016

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Background. A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.

 

Objectives. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.

 

Methods. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion. The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.

 

Conclusion. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

Development of a contextually appropriate, reliable and valid basic Wheelchair Service Provision Test

GARTZ, Rachel
GOLDBERG, Mary
MILES, Alexandria
MILES, Rory
PEARLMAN, Jon
SCHMELER, Mark
BITTMAN, Sarah Jonassen
HALE, Judith
2016

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Purpose:

Currently, there is no internationally accepted way to measure the competency of wheelchair service professionals. The International Society of Wheelchair Professionals aims to develop a Wheelchair Service Provision – Basic Test as a preliminary step towards establishing a certification process. 

 

Method:

A team of wheelchair service provision experts developed test questions and conducted alpha and beta testing in order to validate them. Low-performing test items were eliminated. A pilot test was then conducted, which focused on developing a pass score, determining language barriers and validating the test as a measure of competency. 

 

Results:

90 participants completed one of three versions of the Wheelchair Service Provision – Basic Test. A pass score of 70% was established and 135 questions were accepted for the final test. Analysis of variance indicated there was a difference in scores based on language (p = 0.001), but not based on experience level. This result motivated translation in to the United Nations’ official languages.

 

Conclusions:

The results indicate that the Wheelchair Service Provision – Basic Test is a valid method for measuring basic competency of wheelchair professionals. Additionally, researchers recommend a skills assessment to help to ensure only qualified wheelchair professionals receive the certificate.

‘Everyone needs love’ – an interview study about perceptions of love in people with intellectual disability (ID)

MATTILA, Jenni
MÄÄTTÄ, Kaarina
UUSIAUTTI, Satu
2016

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How do people with intellectual disability (ID) perceive love and its role in their lives? The purpose of this study was to give voice to people with ID themselves and provide information about their needs for love. The study analysed how seven Finnish young adults with mild ID (5 women and 2 men) aged between 18 and 31 years described love and the meaning of love in their lives in semi-structured, qualitative theme interviews. The analysis was theory-led content analysis. The findings showed that the young adults with ID could describe love primarily as emotions and concrete acts, but perceived love as knowledge and skills more difficult to describe. However, the meaning of love was considered crucial and important for everyone’s well-being. The study suggests that the views and opinions of people with ID should be given more attention so that the support and guidance they are given would better need their needs. In addition, the study highlights everyone’s right to love? As per the style. Please suggest.

Inheritance, poverty, and disability

GROCE, Nora Ellen
LONDON, Jillian
STEIN, Michael Ashley
2014

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Inheritance is a significant means of transferring wealth from one generation to the next, and therefore increasingly attracts attention from researchers and pol- icy-makers working on intergenerational and multidimensional poverty. How- ever, until now disabled persons have been overlooked in these discussions. This oversight is particularly unfortunate because, as a group, the estimated one bil- lion people with disabilities (some 15% of the world’s population) are among the poorest and most marginalized of the global population. Over the past dec- ade, a small but growing literature has examined the recursive connections between poverty and disability throughout the developing world. In this paper, we argue that disabled individuals are routinely denied inheritance rights in many low-income and middle-income countries, and that this is a significant and largely unrecognized contributor to their indigence. The denial of inheritance is both a social justice issue and a practice that can no longer be overlooked if disabled persons are to be brought into the development mainstream.

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.

Oscar Pistorius and the melancholy of intersectionality

SWARTZ, Leslie
2013

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The alleged shooting by Paralympian and Olympian athlete Oscar Pistorius of his girlfriend Reeva Steenkamp has led to strong reactions worldwide. Scholars in the field of disability studies have expressed shock and disappointment in response both to the death itself and to its implications for the representation of disability. In South Africa in the wake of the death of Ms Steenkamp, much has been made both by critics of Pistorius and by his defenders about his status as a white South African man, but little has been said about disability issues. This silence in South Africa about disability as a possible identity factor in this case draws attention to the extent to which disability questions remain profoundly raced and gendered, and influenced by the colonial and apartheid past. The tragic alleged shooting by Oscar Pistorius draws attention back to how important intersectionality is to understanding disability in South Africa and other unequal societies.

Parent peer advocacy, information and refusing disability discourses

BELL, M
FITZGERALD, R
LEGGE, M
2013

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Parent peer advocacy is a distinct type of empowering relationship practised in Parent to Parent New Zealand that shares experiential knowledge gained from raising a child with disability, chronic illness or special needs and draws on both partnership and participation ideals of support. This support organisation matches families with impairment, illness and genetic difference in light of issues they encounter as families with disability. In this paper we discuss disabling historical contexts countered by the provision of information as advocacy, ambivalence towards difference in the organisation, and the rise in prospective parents seeking parent peer support. These thematic areas allow us to create an analytical framework to be used in the next phase of an empirical study with Parent to Parent New Zealand.

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.

Children with learning disabilities: A phenomenological study of the lived experiences of Iranian mothers

KERMANSHAHI, S M
VANAKI, Z
AHMADI, F
KAZEMNEJAD, A
AZADFALAH, P
2009

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Nursing as a family-oriented profession involves supporting mothers of children with learning disabilities to gain an awareness of their role. However, few studies have explored the whole experience of such mothers. This study embarks on an understanding of lived experiences of Iranian mothers who have children with learning disabilities. A qualitative approach was adopted using the phenomenology of semi-structured interviews carried out with six Iranian mothers whose children attended a special school in Tehran. The data were analysed in line with van Manen’s suggestions. Two main themes were abstracted; being the centre of stress circles and being in the midst of life and death. Themes include care management challenges for self and child, experiencing through helplessness and hopefulness and experiencing self devote and self neglect. Overall, a majority of mothers experienced a stressful life. The study concludes that Iranian mothers’ lived experience of having children with learning disabilities can be likened to the constant swing of a pendulum between two polarities of positive and negative feelings. This knowledge can provide an heuristic to help health staff guide mothers in adjusting to their children who have learning disabilities.

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