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

No abstract available

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

Cartographers, Conciliators and Catalysts: Understanding the Communicative Roles of Researchers

A review of case studies from a global, ten-year research project coordinated by the Institute of Development Studies suggests that previous efforts to understand the value of research for promoting social change has underappreciated the contribution of researchers as social actors. Researchers inhabit a complex web of relations, they hold many identities, and they act politically to bring about social change in ways large and small that go beyond what they write in journals or in policy briefs. Through interviews and selfreflection, we explored some of these ways – formal and informal, direct and indirect – that researchers communicate their knowledge. To capture some of the diversity, this article presents a typology of different ‘roles’ that researchers play as communicators. We hope this typology might help to clarify our understanding of research utilisation, and might also provide insight into how to approach research communication in more strategic and creative ways

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

Associations Between Adolescent Sport and Exercise Participation and Device-Assessed Physical Activity in Adulthood: Evidence From the 1970 British Cohort Study

BACKGROUND: Adolescence is a critical period filled with life changes. Early implementation of effective health promotion strategies could help alleviate the morbidity and mortality associated with inactivity. This study investigated whether adolescent participation in exercise and sport is associated with device-assessed physical activity (PA) levels in midlife. METHODS: A total of 2984 participants (41.2% male) from the 1970 British Cohort Study were included. Participants were surveyed at age 16 years on 5 indicators of exercise and sport participation. Total daily PA and moderate to vigorous PA (MVPA) at age 46 years were measured using a thigh-worn accelerometer, worn for 7 days. Associations between each adolescent exercise or sport indicator and adulthood total daily PA and MVPA were examined using linear regressions, adjusting for sex, wear time, body mass index, smoking, disability, malaise, alcohol consumption, social class, education, and self-rated health. RESULTS: In fully adjusted models, adolescents who reported exercising "much more" than others (8.6 min/d; 95% confidence interval, -0.1 to 17.1), who played sports at the park/playground more than once a week (8.5 [3.0-14.0] min/d), and who exercised on the most recent Saturday (3.8 [0.7-6.9] min/d) had higher adult total PA levels than those who reported the lowest activity levels. There was no evidence of an association between greater sport and exercise participation at age 16 y and MVPA at age 46 y. There was no association between sports at school and either measure of adult PA. CONCLUSION: Active adolescents, particularly those who engaged in out-of-school exercise, had higher total daily PA levels, but not MVPA levels, in midlife. This highlights the potential of early PA interventions to improve PA levels in adulthood

Genome-wide analysis points to roles for extracellular matrix remodeling, the visual cycle, and neuronal development in myopia

Myopia, or nearsightedness, is the most common eye disorder, resulting primarily from excess elongation of the eye. The etiology of myopia, although known to be complex, is poorly understood. Here we report the largest ever genome-wide association study (43,360 participants) on myopia in Europeans. We performed a survival analysis on age of myopia onset and identified 19 significant associations (p < 5e-8), two of which are replications of earlier associations with refractive error. These 19 associations in total explain 2.7% of the variance in myopia age of onset, and point towards a number of different mechanisms behind the development of myopia. One association is in the gene PRSS56, which has previously been linked to abnormally small eyes; one is in a gene that forms part of the extracellular matrix (LAMA2); two are in or near genes involved in the regeneration of 11-cis-retinal (RGR and RDH5); two are near genes known to be involved in the growth and guidance of retinal ganglion cells (ZIC2, SFRP1); and five are in or near genes involved in neuronal signaling or development. These novel findings point towards multiple genetic factors involved in the development of myopia and suggest that complex interactions between extracellular matrix remodeling, neuronal development, and visual signals from the retina may underlie the development of myopia in humans