The psycho-social impact of impairment: the case of motor neurone disease

No abstract available

Teaching Emotion: Emotion as a Bi-product of Research, Equipping Social Scientists to Manage this Data

This paper examines how social researchers USE emotion, rather than a focus on what emotion ‘is’. Qualitative data (as sometimes with quantitative) is a social engagement that requires emotional energy to produce it, in terms of building rapport for example. Further it produces emotional energy as the research empathetically absorbs the data produced. Traditionally (Kleinman & Copp, 1993; Bellas, 1999) this is distilled down to produce discursive evidence, but this sterilising of social data leaves emotion as outside of forms of data recognised as 'credible' (Fine, 1994). This paper considers the value of including emotional data, and considers ways of managing this. Further it considers the 'burden' on researchers who 'feel' the emotional pressure of collecting data, and considers how pedagogically, research methods training must adapt to train students in resilience and ‘emotion managers’. At once this paper explores opportunities to communicate the emotional properties of data to an academic audience (e.g. drawing on Camacho, 2016); but also, to manage the psychological impact of 'emotional data' on the researcher (drawing on Hume, 2007). This paper draws on my work researching the lived experience of adults with a life-limiting condition (Ferrie et al, 2013). Further it draws upon experiences teaching early career researchers about managing the emotional elements of their work (Dickson-Swift et al, 2009), and how to write about this in academic outputs

Sociology and human rights: what have they got to say about care and dignity

The focus of this contribution mainly falls on the relevant policy concerning care in the United Kingdom pertaining to older people, people with mental ill health and anyone else in receipt of health and/or social care services. It offers an attempt to consider the impact that sociology could have on improving the ethical practices of care. Attempts to assert rights in residential care have been challenged by a dominant culture that has eroded claims to citizenship. It is argued that this is due to a legal emphasis on regulation through care standards that has limited use because it avoids the realities of care. This contribution argues that a purely legal understanding of human rights is inadequate to address the social realities of inadequate care. The treatment of and provision of care for people living in long-stay institutions requires a human rights framework that operates socially rather than legally to recognise lived experiences in order to empower and emancipate

Teaching Emotion: Emotion as a Bi-product of Research, Equipping Social Scientists to Manage this Data

This paper examines how social researchers USE emotion, rather than a focus on what emotion ‘is’. Qualitative data (as sometimes with quantitative) is a social engagement that requires emotional energy to produce it, in terms of building rapport for example. Further it produces emotional energy as the research empathetically absorbs the data produced. Traditionally (Kleinman & Copp, 1993; Bellas, 1999) this is distilled down to produce discursive evidence, but this sterilising of social data leaves emotion as outside of forms of data recognised as 'credible' (Fine, 1994). This paper considers the value of including emotional data, and considers ways of managing this. Further it considers the 'burden' on researchers who 'feel' the emotional pressure of collecting data, and considers how pedagogically, research methods training must adapt to train students in resilience and ‘emotion managers’. At once this paper explores opportunities to communicate the emotional properties of data to an academic audience (e.g. drawing on Camacho, 2016); but also, to manage the psychological impact of 'emotional data' on the researcher (drawing on Hume, 2007). This paper draws on my work researching the lived experience of adults with a life-limiting condition (Ferrie et al, 2013). Further it draws upon experiences teaching early career researchers about managing the emotional elements of their work (Dickson-Swift et al, 2009), and how to write about this in academic outputs

Living with MND: An Evaluation of Care Pathways Available to Adults with, and the Families or Carers of Adults with Motor Neurone Disease in Scotland

Main Findings Motor Neurone Disease (MND) is a progressive condition that damages motor neurones, the cells that control voluntary muscle activity, in both the spinal cord and the brain. It can cause difficulty in walking and movement, talking, swallowing and breathing and many muscles in the body can become affected. To find out what it is like to live with MND from the perspective of those with the condition we carried out a longitudinal study in which we interviewed 40 people with MND and their partners a number of times over a two year period. We found that: Control, or more particularly the lack of it was the overarching theme that occurred throughout the interviews. People wanted to be consulted, informed and involved in decisions about their health and their social care and where this happened people were more likely to report satisfaction with the service. The diagnosis of MND is a long and protracted process, one that was for many a very distressing experience. 45% of those we spoke to took over 12 months for a diagnosis, 19% over 18 months. Participants had difficulty getting professionals to take their symptoms seriously and once they entered the neurology system many people experienced delays and often the diagnosis was not confirmed by a neurologist. Physical access to hospitals was in some cases difficult. Car parking and the location of the clinic often made it hard for people to get to a hospital appointment. Health professionals had an important role. Good professionals were those who took time to create a sense of teamwork with the person with MND and their family. This was less likely to happen with hospital consultants and where this did not people felt insecure and not listened to. There was also some evidence of poor communication between professionals and medical notes were often not shared between different professionals. Where people accessed general wards they were rarely treated well. Informal carers provided much of the social care and support for those with MND, with spouses meeting most of the need. Whilst many people were happy with this arrangement meeting the need placed a great deal of strain on the families. Many people did not want to rely on care supplied by outside agencies as they did not trust the quality or the reliability of the care and neither did they want their home overrun with people. Housing adaptations and the provision of aids to daily living were for many a great cause of stress and strain and many people felt that they were not involved in the decision making process, felt out of control and unable to influence the situation. The rapidly progressive nature of MND can exacerbate this problem. Social Care and support provided by local authorities was very heavily criticised. There were inconsistencies between services, people felt excluded from decisions made about their care and their care needs and people did not have access to the necessary information to make an informed choice about which services to access. Specialist Care Nurses (SCN) played a vital role in the care and support of those with MND. Not only do they provide help and support directly they also help to act as a champion for the family and coordinate services and service provision. This service is however under great strain and there are a significant number of people for whom this service is not working because the service was too stretched and the resources were not available to allow the SCN to meet their needs

Methodological challenges in developing an evidence base, and realizing rights

This paper focuses on the methodological challenges for a small nation, with a view to reforming and realizing human rights. The paper begins with a review of traditional measures that seek to capture comparative data and the limitation of indicators both generally and as a tool for capturing violations in Scotland. Capturing violations, particularly those that are hidden (because they happen in private spaces or to those without power or status) are necessary to clearly understand what reform is required. This creates methodological challenges in collecting data that is perhaps not understood within a human rights framework and so is not reported adequately. The paper will focus on national action plans (NAP), using the example of Scotland’s NAP (SNAP) as vital for creating a space allowing for data collection and solution generation, shared by those who experience violations and those with the power to challenge. Diffusing responsibility for action to Rights Holders and Duty Bearers engaged in creating the space facilitates reform. Further this approach can lend legitimacy to those who are violated, because they appear in spaces where their experiences are recognized within a human rights framework. This evidence can be used to demonstrate the prevalence of rights violations in a small nation, and thus can feed into debates about the need for human rights legislation and measures that go beyond comparative indicators. It also highlights that a State must be committed to reform regardless of methodology used if it is to realize rights

Living with MND: An Evaluation of Care Pathways Available to Adults with, and the Families or Carers of Adults with Motor Neurone Disease in Scotland

Main Findings Motor Neurone Disease (MND) is a progressive condition that damages motor neurones, the cells that control voluntary muscle activity, in both the spinal cord and the brain. It can cause difficulty in walking and movement, talking, swallowing and breathing and many muscles in the body can become affected. To find out what it is like to live with MND from the perspective of those with the condition we carried out a longitudinal study in which we interviewed 40 people with MND and their partners a number of times over a two year period. We found that: Control, or more particularly the lack of it was the overarching theme that occurred throughout the interviews. People wanted to be consulted, informed and involved in decisions about their health and their social care and where this happened people were more likely to report satisfaction with the service. The diagnosis of MND is a long and protracted process, one that was for many a very distressing experience. 45% of those we spoke to took over 12 months for a diagnosis, 19% over 18 months. Participants had difficulty getting professionals to take their symptoms seriously and once they entered the neurology system many people experienced delays and often the diagnosis was not confirmed by a neurologist. Physical access to hospitals was in some cases difficult. Car parking and the location of the clinic often made it hard for people to get to a hospital appointment. Health professionals had an important role. Good professionals were those who took time to create a sense of teamwork with the person with MND and their family. This was less likely to happen with hospital consultants and where this did not people felt insecure and not listened to. There was also some evidence of poor communication between professionals and medical notes were often not shared between different professionals. Where people accessed general wards they were rarely treated well. Informal carers provided much of the social care and support for those with MND, with spouses meeting most of the need. Whilst many people were happy with this arrangement meeting the need placed a great deal of strain on the families. Many people did not want to rely on care supplied by outside agencies as they did not trust the quality or the reliability of the care and neither did they want their home overrun with people. Housing adaptations and the provision of aids to daily living were for many a great cause of stress and strain and many people felt that they were not involved in the decision making process, felt out of control and unable to influence the situation. The rapidly progressive nature of MND can exacerbate this problem. Social Care and support provided by local authorities was very heavily criticised. There were inconsistencies between services, people felt excluded from decisions made about their care and their care needs and people did not have access to the necessary information to make an informed choice about which services to access. Specialist Care Nurses (SCN) played a vital role in the care and support of those with MND. Not only do they provide help and support directly they also help to act as a champion for the family and coordinate services and service provision. This service is however under great strain and there are a significant number of people for whom this service is not working because the service was too stretched and the resources were not available to allow the SCN to meet their needs

An In-Depth Examination of the Implementation of the Disability Equality Duty in England: Report for the Office for Disability Issues

This seven-month study examined the implementation of the Disability Equality Duty (DED) in England. The DED, introduced through the Disability Discrimination Act 2005, applies to public authorities in England, Wales and Scotland. The DED comprises a general duty and specific duties. The general duty requires public authorities to carry out their functions with due regard to the need to promote equality between disabled and non-disabled people. The specific duties require public authorities to publish a Disability Equality Scheme (DES) setting out how they intend to fulfil their general duty and specific duties. In addition, certain Secretaries of State must publish an overarching report for their policy sectors every three years. A Code of Practice1 to assist authorities with implementing the Duty was published by the then Disability Rights Commission

Realising international human rights: Scotland on the global stage

Editorial to Special Issue of the International Journal of Human Rights

The impact of the Disability Discrimination Act Part 4 on Scottish schools

This thesis aims to highlight the dilemmas within education provision for disabled pupils. This is the product of competing frameworks, coming from different historical and philosophical contexts. The Warnock Report (1978) only managed a partial transition within education for disabled pupils from segregation to inclusion. This midway stage of integration continued the bureaucratic and professional dominance over access to additional support and continued to segregate the most affected pupils despite using humanitarian and equality rhetoric to defend its position. Throughout the 1980s and 1990s this tension led to wide variation in policy interpretation throughout the UK, yet the SEN policy framework went largely unchallenged until the Disability Discrimination Act (DDA, 1995) launched the Special Educational Needs and Disability Act, also known as Part 4 in 2001 (DDA, 2001). The DDA attempted to impose a rights-based model of equality on education. The survey data and qualitative in-depth interviews generated by this thesis show that the existing tension fuelled a resistance that has challenged a thorough engagement with the DDA. Further the surveys sent to schools and local authorities suggest that insufficient time was afforded the DDA Part 4 to impact on Scottish schools before new legislation was introduced and ratified in Scottish law (Additional Support for Learning Act, 2004). In-depth interviews exploring the system of complaint under the DDA Part 4 revealed a further tension between impairment effects and social expectations of discipline in schools related specifically to a diagnosis of Attention Deficit Hyperactivity Disorder, or allied conditions. In following the ethos of the social model, this thesis concludes that the DDA Part 4 failed to account for the differentiation of experience within the disabled community, and so offered little support for those most challenged by the pedagogical structures in schools. Based on the findings of this thesis, the DDA Part 4 has had little impact on Scottish schools, due in part to the tension within the competing SEN framework and timing of other policies. In addition inherent flaws within the terms of the DDA Part 4, including the omission of auxiliary aids and services from the remit of discrimination, contributed to its failure to impact on Scottish schools