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School toilets: queer, disabled bodies and gendered lessons of embodiment

SLATER, Jenny
JONES, Charlotte
PROCTER, Lisa
2016

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In this paper we argue that school toilets function as one civilising site [Elias, 1978. The Civilising Process. Oxford: Blackwell] in which children learn that disabled and queer bodies are out of place. This paper is the first to offer queer and crip perspectives on school toilets. The small body of existing school toilet literature generally works from a normative position which implicitly perpetuates dominant and oppressive ideals. We draw on data from Around the Toilet, a collaborative research project with queer, trans and disabled people (aroundthetoilet.wordpress.com) to critically interrogate this work. In doing this we consider ‘toilet training’ as a form of ‘civilisation’, that teaches lessons around identity, embodiment and ab/normal ways of being in the world. Furthermore, we show that ‘toilet training’ continues into adulthood, albeit in ways that are less easily identifiable than in the early years. We therefore call for a more critical, inclusive, and transformative approach to school toilet research.

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 Online Survey on Identification of Evaluation Capacity, Needs and Current Practice of Programme Evaluation in Community-based Rehabilitation

WEBER, Joerg
POLACK, Sarah
HARTLEY, Sally
2016

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Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good practice and providing a foundation for evidence of efficacy of practice. Since not much is known about the extent to which monitoring and evaluation (M&E) are carried out within CBR programmes, this study aimed to enhance knowledge by focussing on current M&E activities, the need and capacity of programmes to conduct evaluations and the challenges experienced. 

 

Method: An online survey of 15 questions was developed, field-tested and sent out to 236 CBR managers in Africa, Asia and Latin America.  

 

Results: The majority (86%) of the respondents indicated that their programmes had been evaluated in the past.While this was mainly done by international donors (87%), only around half of the respondents reported programme participants as the main audience. Just over half of the programmes (54%) included people with disabilities, their families and community members in evaluation processes. Insufficient financial resources were considered the most important challenge to conduct evaluation, particularly in the African region and among smaller programmes. The complexity of CBR was also indicated as an important barrier to evaluation.

 

Conclusions and Recommendations:  Although evaluations have been widely implemented in CBR programmes, many of them are not locally owned, and people with disabilities and their families are often not included in evaluation processes. The issues of limited financial resources and CBR complexity reflect current discussions in other areas of mainstream development. It is therefore recommended that models for evaluation in CBR should learn from, and be embedded in, ongoing developments in mainstream evaluation in international developm

Community-Based Rehabilitation Services in Low and Middle-Income Countries in the Asia-Pacific Region: Successes and Challenges in the Implementation of the CBR Matrix

Cayetano, Roi Dennis Adela
Elkins, Jeananne
2016

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Purpose: This literature review aims to explore the importance of physical therapy services and the increasing awareness of CBR, specifically related to challenges in its implementation in low and middle-income countries in the Asia-Pacific region.

 

Method: A literature review of multiple databases was conducted to locate relevant articles written within the past five years. The databases used for the search were Google Scholar, Cochrane Library, CINAHL, and PubMed.

 

Results: Thirteen articles about CBR were included in the literature review. These consist of studies on the quality of life, access to healthcare services, and barriers to CBR, as well as about the impact of CBR to LMICs and stakeholders. The articles demonstrate the vast potential of CBR, especially in LMICs in the Asia-Pacific region, with a significant positive impact on the lives of people with disabilities.

 

Conclusion: CBR has improved the quality of life, access to medical services, functional independence, autonomy, community inclusion, and empowerment of people with disabilities in LMICs in the Asia-Pacific region. However, challenges in the implementation of CBR remain. These include lack of awareness and understanding of CBR, and physical, environmental, socio-economical and personal barriers.

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.

How are service users instructed to measure home furniture for provision of minor assistive devices?

ATWAL, Anita
MCINTYRE, Anne
SPILIOTOPOULOU, Georgia
MONEY, Arthur
PARASKEVOPULOS, Ioannis
2016

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Purpose: Measurements play a vital role in providing devices that meet the individual needs of users. There is increasing evidence of devices being abandoned. The reasons for this are complex but one key factor that plays a role in non-use of equipment is the lack of fit between the device, environment and person. In addition, the abandonment of devices can be seen as a waste of public money. The aim of this paper is to examine the type, the readability, and the content of existing guidance in relation to measuring home furniture.

 

Method: An online national survey involving health and social care trusts in the UK. We conducted a synthesis of leaflets associated with measurement of furniture to identify existing guidance. The content and readability of this guidance was then evaluated.

 

Results: From the 325 responses received, 64 therapists reported using guidance. From the 13 leaflets that were analysed, 8 leaflets were found to meet Level 3 Adult Literacy Standards (age 9–11). There were differences in the way in which the measurement of furniture items occurred within the leaflets with no measurement guidance reported for baths.

 

Conclusion: There is a need to standardize guidance to ensure that measurements are reliable.

Cost-effectiveness of a Community-based Rehabilitation Programme in Nepal

Vaughan, Kelsey
Thapa, Aradhana
2016

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Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.

 

Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.

 

Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.

 

Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.

Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Madden, Rosamond H
et al
2016

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Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community- based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels.

 

Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts andstructures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way.

 

Results: The MM&M is now freely available on-line at thttp://sydney.edu. au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed.

 

Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data.To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team including collaboration with CBR stakeholders.

Exploring normativity in disability studies

VEHMAS, Simo
WATSON, Nick
2016

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Normativity is a concept that is often misapplied in disability studies, especially in ‘postconventional’ accounts, where the concept is conflated with ‘normal’, ‘normate’, or ‘standard’. This article addresses this confusion, explores the meaning and use of ‘normativity’, and presents some analytic tools to discuss normative issues of right and wrong. The article finishes by discussing examples where conceptual confusions result in confused normative judgments focusing in particular on agency, responsibility and moral status. The article argues that disability research should carefully consider the use of theories and empirical knowledge in the light of their ethical implications as well as the lived experiences of disability.

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