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A comparison of routine and case-managed pathways for recovery from musculoskeletal disorders in people in employment

BERGMAN, Beverly P
DEMOU, Evangelia
LEWSEY, James
MACDONALD, Ewan
2021

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Purpose: To compare outcomes in employed people from an enhanced routine management pathway for musculoskeletal disorders within National Health Service Scotland with an existing active case-management system, Working Health Services Scotland.


Materials and methods: The study comprised a service evaluation using anonymised routinely collected data from all currently employed callers presenting with musculoskeletal disorder to the two services. Baseline demographic and clinical data were collected. EuroQol EQ-5DTM scores at the start and end of treatment were compared for both groups, overall and by age, sex, socio-economic status, and anatomical site, and the impact of mental health status at baseline was evaluated.

 

Results: Active case-management resulted in greater improvement than enhanced routine care. Case-managed service users entered the programme earlier in the recovery pathway; there was evidence of spontaneous improvement during the longer waiting time of routine service clients but only if they had good baseline mental health. Those most disadvantaged through mental health co-morbidity showed the greatest benefit.

 

Conclusions: People with musculoskeletal disorders who have poor baseline mental health status derive greatest benefit from active case-management. Case-management therefore contributes to reducing health inequalities and can help to minimise long-term sickness absence. Shorter waiting times contrib- uted to better outcomes in the case-managed service.

‘It’s been taken away’: an experience of a disappearing dyslexia diagnosis

CAMERON, Harriet
2021

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This research explores the experiences of Beth, a university student in the UK, as she comes to be labelled as ‘dyslexic’, and as she has her diagnosis taken away. Through use of Interpretative Phenomenological Analysis (IPA) and discourse analysis, the research seeks to understand how Beth made sense of these experiences, and to explore the discursive ‘life’ of dyslexia within this sense-making. The discussion in this paper proceeds chronologically through Beth’s story, from ‘struggle’, to ‘legitimation’ to ‘derogation’, and concludes with a call to recognise the role of diagnosis in the field of special educational needs (SEN) from a social constructionist and relational perspective.

Work capacity assessments and efforts to achieve a job match for claimants in a social security setting: an international inventory

SENGERS, Johan H
AMBA, Femke I
BROUWER, Sandra
STAHL, Christian
2020

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Purpose: Many high-income countries are witnessing a shift of focus on eligibility for disability benefits towards promotion of work reintegration. However, little is known about how countries assess work cap- acity, and how a job match is then obtained. The current study aims to compare work capacity assess- ments and available efforts to achieve a job match in eight high-income OECD countries.

 

Methods: A survey was conducted among key stakeholders concerning organization of work capacity assessments in social security settings, and efforts made to obtain a job, across eight OECD countries: Australia, Denmark, Finland, Iceland, Sweden, the Netherlands, the United Kingdom and the United States. 

 

Results: In most countries, work capacity is assessed at several time points, with variations in moments and in information used for job matching. In countries obtaining information on personal and work levels, the search to find a job match usually begins with the persons who have disabilities.

 

Conclusion: Although a shift towards a holistic focus in work capacity assessment has been recognized, medical factors still prevail. Limited emphasis is placed on the implications of functional limitations for the possibilities of work. A holistic approach to assessment needs to be coupled with holistic support measures through provision of coordinated and high quality job matching services.

Politically disabled: barriers and facilitating factors affecting people with disabilities in political life within the European Union

WALTZ, Mitzi
SCHIPPERS, Alice
2020

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Diversity is a current buzzword in politics, but in the EU, people with disabilities are not achieving the gains made by women and ethnic minorities. This research examined barriers and facilitating factors through a literature review and interviews with politicians and political activists in five European countries. Six categories of barriers and facilitating factors were found: networks, recruitment and mentoring, resources (money, time and energy), the “hierarchy of impairments,” accessibility of political spaces and activities, and laws and policies. Key recommendations include removing access barriers to political participation, from voting to holding office, including physical and procedural barriers in political spaces; ensuring that equalities legislation covers politicians; eliminating barriers imposed by benefits systems; promoting direct support for political activists, candidates and office-holders with disabilities, including access to necessary services and supports; encouraging parties to recruit and mentor disabled people with leadership potential; and considering quotas and job-sharing.

  • Not many disabled people are active in politics. In the EU, about 15% of people have an impairment, but only around 1% of politicians do.
  • Inclusion at school and in social groups makes it easier to get into political jobs or to try to get elected.
  • Some disabled political activists, volunteers, candidates and office-holders don’t get the support they need.
  • Political parties can help by finding disabled people, supporting them, and helping them get involved in politics.
  • Our article provides several ideas about how to make it easier for disabled people to run for office and work in politics.

Development of the MobQoL patient reported outcome measure for mobility-related quality of life

BRAY, Nathan
HAF SPENCER, Llinos
TUERSLEY, Lorna
TUDOR EDWARDS, Rhiannon
March 2020

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Purpose: To examine how mobility and mobility impairment affect quality of life; to develop a descriptive system (i.e., questions and answers) for a novel mobility-related quality of life outcome measure.

 

Materials and methods: Data were collected through semi-structured interviews. Participants were recruited predominantly from NHS posture and mobility services. Qualitative framework analysis was used to analyse data. In the first stage of analysis the key dimensions of mobility-related quality of life were defined, and in the second stage a novel descriptive system was developed from the identified dimensions.

 

Results: Forty-six interviews were conducted with 37 participants (aged 20–94 years). Participants had a wide range of conditions and disabilities which impaired their mobility, including cerebral palsy, multiple sclerosis, and arthritis. Eleven dimensions of mobility-related quality of life were identified: accessibility, safety, relationships, social inclusion, participation, personal care, pain and discomfort, independence, energy, self-esteem, and mental-wellbeing. A new outcome measure, known as MobQoL, was developed.

 

Conclusions: Mobility and mobility impairment can have significant impacts on quality of life. MobQoL is the first outcome measure designed specifically to measure the impact of mobility on quality of life, and therefore has utility in research and practice to measure patient outcomes related to rehabilitation.

The regressive power of labels of vulnerability affecting disabled asylum seekers in the UK

YEO, Rebecca
2019

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There has been some progress in the United Kingdom regarding official recognition of the existence and needs of disabled asylum seekers and refugees. However, references are commonly accompanied by euphemistic labels, particularly of ‘vulnerability’. This should be understood in the context of systematic reduction of services and support available to the wider population of asylum seekers and disabled people in the United Kingdom. I argue that these processes reinforce each other and that both undermine a rights-based approach. Focusing on recent asylum and immigration policies, I explore how labels of ‘vulnerability’ obscure systemic oppression and distract from the rights and achievements of disabled people. The regressive elements of vulnerability discourse are presented as if better than nothing. Such discourse risks reinforcing hegemonic acceptance of distinctions of human worth, with detrimental impact for migrants and citizens alike.

‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

PARSONS, Sarah
YUILL, Nicola
GOOD, Judith
BROSNAN, Mark
2019

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Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

What sort of ‘inclusion’ is Continuing Professional Development promoting? An investigation of a national CPD programme for inclusive physical education

MAKOPOULOU, Kyriaki
PENNEY, Dawn
NEVILLE, Ross
THOMAS, Gary
2019

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Inclusion is positioned at the forefront of global educational reform. The study reported focused on a national Continuing Professional Development (CPD) programme for Inclusive Physical Education (IPE) in England. The research was designed to critically explore how CPD providers (i.e. tutors) variously conceptualised and practiced inclusion in the context of running a day-long CPD course for physical education teachers. Using qualitative methodology, data were collected via course observations (n= 27), informal interviews with tutors (n = 10), and a tutor questionnaire (n = 18). Findings suggest that although tutors’theoretical interpretations of inclusion were largely consistent with contemporary, broad understandings, there was notable variability and inherent tensions in the ways they talked about and enacted inclusion in practice. In many instances, inclusion was infused with particular perceptions about ability and ability grouping. Only a small number of tutors encouraged teachers to question and ‘disturb’ their current practices. Findings from this research extend insights into the contested nature of inclusion in contemporary PE and highlight the need for research to engage with multiple stakeholders in physical education teaching and CPD. This research reflects that CPD providers have a key role to play in extending teachers’ understandings of inclusive pedagogy

Disability, socialism and autonomy in the 1970s: case studies from Denmark, Sweden and the United Kingdom

RYDSTRÖM, Jens
2019

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n the 1970s, grassroots disability movements in many countries changed the thinking around disability and disability politics. Nonetheless, they were also part of larger political upheavals in the western world. How were they inspired by the socialist, feminist, and gay and lesbian movements? In addition, how did they relate to non-disabled allies? Organisations in Denmark and Sweden are investigated and compared to early disability-rights movements in the United Kingdom. Independently of each other, all groups developed materialist models, although only in Sweden and the United Kingdom did this lead to a linguistic distinction between ‘impairment’ and ‘disability’. Danish activists would rather use provocative language, while developing a social understanding of disability. They were also the only ones to discuss gender and sexuality. There are more similarities than differences between the movements, although the Danish specificities contributed to improvements in how Danes with disabilities can develop a positive sex life.

  • In the 1970s, new political ideas grew about ways of living, equality between the sexes, gay and lesbian rights, and sexual freedom. New groups started to talk about how to understand disability.
  • This article investigates whether the new disability groups in Denmark and Sweden talked about these ideas and whether they involved non-disabled people.
  • Danish and Swedish disability groups are compared to early disability rights organisations in the United Kingdom. The Danish and Swedish disability groups were more open to non-disabled members than groups in the United Kingdom.
  • The article also found that the Danish group discussed sexuality a lot. In Sweden and the United Kingdom, the disability groups did not talk about sex at all.

Alternative spaces of failure. Disabled ‘bad boys’ in alternative further education provision

JOHNSTON, Craig
BRADFORD, Simon
2019

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This article draws from an ethnographic study of a group of school-aged disabled white working-class and self-proclaimed ‘bad boys’ in one Alternative Provision (AP) in an English further education college. These young disabled students’ disabilities contribute to the formation of their revalorised – yet stigmatised – identities. Stigma also facilitates the governance of their educational careers. The article considers how this group understands its precarious existence in and beyond AP and how these young men resist the conditions of their devaluation. Despite multiple, stigmatising experiences, the article shows how they appropriate space and (social) capital, often in tension with other students and college staff. The article suggests that there are questions about AP as an appropriate means to confer value upon young disabled students.

  • White, disabled, working-class male students are increasingly placed into Alternative Provisions intended for young people who would otherwise not receive suitable education for various reasons. The experiences of such students have received limited research attention.
  • This article is based on research conducted with young people who attend a provision located within an English further education college. The research found that these young people experience a lack of support, low trust and disregard from peers and some professionals at a crucial time in their educational careers.
  • It is important to understand disability in relation to other social differences – social class and gender, for example – as the combined impact of these in educational settings may undermine future career prospects and life chances.
  • The article emphasises the importance of education practices that develop reciprocity, trust and cooperation in improving the often oppressive circumstances young disabled people face in post-school settings.

Provocations for Critical Disability Studies

GOODLEY, Dan
LAWTHOM, Rebecca
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2019

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This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

Disabled men with muscular dystrophy negotiate gender

ABBOTT, David
CARPENTER, John
GIBSON, Barbara E
HASTIE, Jon
JEPSON, Marcus
SMITH, Brett
2019

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Disability is often portrayed as a one-dimensional category devoid of further intersections. Work which has addressed the intersection of disability and male gender has rarely considered different types of disability or impairment, or foregrounded the experiences of disabled men themselves. This article is based on empirical work carried out in England with men who have Duchenne muscular dystrophy (DMD). We explored with participants their sense of themselves as men and their commonalities and differences with other men. Findings suggest that men with DMD claim, reject and redefine what it meant to them to be men. Doing gender was often heavily reliant on the availability and permission of others. Our study highlights the usefulness of exploring gender with men with particular experiences of disability and of looking at how this might change over a life course, especially when the nature and extent of the life course is a precarious one.

Views of children with cerebral palsy and their parents on the effectiveness and acceptability of intensive speech therapy

PENNINGTON, Lindsay
RAUCH, Rosie
SMITH, Johanna
BRITTAIN, Katie
March 2019

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Purpose: To understand children and parents’ views of the effectiveness and acceptability of intensive dysarthria therapy.

 

Materials and Methods: Twenty-two children with cerebral palsy and dysarthria joined a pilot RCT comparing intensive therapy and usual care. Children (n = 11) allocated to dysarthria therapy comprising three 40-minute sessions per week for six weeks and their parents (n = 11) were interviewed two weeks before and six weeks after therapy. Interviews were transcribed verbatim and analysed thematically.

 

Results: Analysis revealed five themes: Motivations, My new voice; The new me; I can do more; Success rooted in therapy design. Children had received little therapy for speech and were keen to improve intelligibility. Overall, therapy was viewed as effective. Participants described changes in children’s speech production, which they associated with increased speech intelligibility. Children were described as more confident following the therapy, to have more successful conversations, with a wider range of partners in more environments, thereby increasing their social participation. The programme was viewed as acceptable, despite its intensity, due to the short term commitment and wider benefits for the child. Parents valued the organised structure and individualisation of the programme and inclusion in the therapy process.

 

Conclusion: Families found the intervention acceptable and effective. A definitive trial of its clinical effectiveness is warranted.

Living with Ménière’s disease: an interpretative phenomenological analysis

KAUR TALEWAR, Kulvinder
CASSIDY, Elizabeth
MCINTYRE, Anne
January 2019

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Purpose: To explore the meanings of Ménière’s disease from the perspective of people living with this condition and to understand what was considered significant and important in participants’ everyday lives.

 

Materials and methods: Four women with Ménière’s disease participated in face-to-face semi-structured interviews. Accounts were recorded, transcribed, and analysed using an iterative process integral to Interpretative Phenomenological Analysis.

 

Results: Three interconnected themes were identified. “You have no control whatsoever” conveys participants’ perceptions of vertigo as having a disruptive and ongoing impact on physical and psychosocial function in everyday life. “Ménière’s takes away your life completely” describes Ménière’s as impinging on participants’ most meaningful activities and relationships, and as restricting their ability to live their lives on their own terms. “You get on with life” recounts participants’ efforts to refashion their lives whilst living with this condition and manage its most harmful effects. The psychosocial impact of living with Ménière’s disease and its relevance to rehabilitation is discussed.

 

Conclusions: Ménière’s disease has an enduring physical and psychosocial impact. Clinicians who acknowledge and respond to an individual’s subjective experience of their condition may be key to their engagement in therapy. Service users should have a voice in health service design and delivery.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

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