Juvenile Batten disease: A challenge to conventional sociological approaches of chronic illness and disability.

Demographic trends towards an ageing population and advances in the treatment of acute conditions and in the efficacy of life preserving treatments have led to an increase in the number of people living with chronic illnesses. These developments, along with the recognition of chronic illness as the most common cause of impairment in the developed world, have raised the profile of chronic illness and the associated issue of disability, making them an increasingly important aspect of the study of healthcare. This thesis explores the experiences of families of children and young adults living with juvenile Batten disease - a rare neurodegenerative chronic condition - as an exemplar of the changing nature of chronic illness and disability towards the end of the twentieth century. The ongoing debates around definitions and attitudes are examined with particular reference to the symbiotic, and often antagonistic, relationship between biomedicine and sociology in this area. The experiences of the families of children and young adults with juvenile Batten disease, and the methodological dilemmas inherent in studying a condition of this kind are used to challenge existing approaches to the field. The changing nature of the experience of chronic illness is explored through the growth in community care, self-help and wider access to information. This is related to the sociological literature on chronic illness and disability with specific reference to the role of users and experts in the research context, the place of the body within the literature, the challenge to biomedicine inherent in both literatures, and the social model of disability. It is suggested that the remit of the sociology of disability needs to be widened to address the embodied nature of disability and to better incorporate disabilities caused by chronic illnesses and rare diseases, profound multiple disabilities and degenerative conditions

Threats to embodied well-being: An exploration of how disabled people negotiate barriers in hospital settings

Taking a social model of disability approach, this article explores how disabled people negotiate barriers in the large, modern hospital settings typically found in complex healthcare systems. While there is evidence of intractable barriers in the United Kingdom’s National Health Service, little is known about the actions disabled people take in the face of barriers and the immediate effects of doing so. Analysis of data from a qualitative study of disabled people’s healthcare encounters is presented. This draws on the concept of threats to embodied well-being to understand how disabled people perceive barriers and the influence this perception has on barrier negotiation. It demonstrates that some barriers are unique to healthcare and that these place disabled people in situations where their well-being is threatened. Despite these situations being inherently disempowering, disabled people are forced to take whatever action they can to protect the embodied self. We theorise that barriers are created inadvertently by the design, organisation and healthcare practices characteristics of modern hospital settings. Effective barrier removal requires understanding not only their impact on disabled people’s embodied well-being, but also the political, policy and social relations implicated in their creation

A qualitative exploration of motivation to self-manage and styles of self-management amongst people living with type 2 diabetes

The study examined the motives that people living with type 2 diabetes (T2D) had for self-managing their condition and ways they used to assess the success of their self-management efforts. Using semistructured interviews (), focus groups (3 × participants), and open-ended questionnaires (), people living with and self-managing T2D were recruited from a community-based T2D participation group. Most participants were older (aged 60+) and lived in a socioeconomically deprived area in the United Kingdom. Data were analysed thematically using framework analysis. Patients’ motives for self-management included (i) concern about the anticipative effects of T2D; (ii) wishing to “stay well”; (iii) maintaining independence; (iv) reducing the need for healthcare professionals; and (v) improving quality of life. Six self-management styles were found and pertained to self-managing: (i) through routinisation; (ii) as a burden; (iii) as maintenance; (iv) through delegation; (v) through comanagement; and (vi) through autonomy. Motivators for self-management shaped the criteria people used to judge the success of their self-management practices and influenced their self-management style. The findings show that styles of T2D self-management are mediated and moderated by sociocontextual issues. Healthcare professionals should take these into account when supporting people living with T2D

Comparative Optimism, Self-Superiority, Egocentric Impact Perception and Health Information Seeking: A COVID-19 Study

We examined perceived self-other differences (self-uniqueness) in appraisals of one’s risk of an infectious disease (COVID-19), one’s adherence to behavioural precautionary measures against the disease, and the impact of these measures on one’s life. We also examined the relationship of self-uniqueness with information seeking and trust in sources of information about the disease. We administered an online survey to a community sample (N= 8696) of Dutch-speaking individuals, mainly in Belgium and The Netherlands, during the first lockdown (late April-Mid June 2020). As a group, participants reported that they were less likely to get infected or infect others or to suffer severe outcomes than average (unrealistic optimism) and that they adhered better than average to behavioural precautionary measures (illusory superiority). Except for participants below 25, who reported that they were affected more than average by these measures (egocentric impact bias), participants also generally reported that they were less affected than average (allocentric impact bias). Individual differences in selfuniqueness were associated with differences in the number of information sources being used and trust on these sources. Higher comparative optimism for infection, selfsuperiority, and allocentric impact perception were associated with information being sought from fewer sources; higher self-superiority and egocentric impact perception were associated with lower trust. We discuss implications for health communication

Insights into the oral health beliefs and practices of mothers from a north London Orthodox Jewish community

<p>Abstract</p> <p>Background</p> <p>The objective of this study was to explore oral health knowledge and beliefs and access to dental care in a culturally distinct Orthodox Jewish community in North London, with a view to informing local health policy.</p> <p>Methods</p> <p>A dual method qualitative approach to data collection was adopted in this study utilising semi-structured face to face interviews and focus groups with women from this North London orthodox Jewish community. In total nine interviews and four focus groups were conducted with a purposive sample of thirty three mothers from the community aged 21-58 years. The data were transcribed and analysed using Framework Methodology</p> <p>Results</p> <p>Cultural influences, competing pressures and perceptions of hereditary influences, together with a lack of contemporary oral health knowledge are the main factors affecting oral health knowledge and beliefs. This supported an overall perspective of disempowerment or a perceived lack of control over oral health behaviours, both for mothers and their children. Community signposting pointed mothers to dental services, whilst family pressures together with inadequate capacity and capability and generic barriers such as fear and cost acted as barriers. Mothers from this community welcomed community development initiatives from the NHS.</p> <p>Conclusions</p> <p>The results of this study provide insight into the challenges of a culturally isolated community who would welcome community support through schools and expanded culturally appropriate opening hours to improve access to dental care.</p

Comparative optimism about infection and recovery from COVID‐19; Implications for adherence with lockdown advice

Background Comparative optimism, the belief that negative events are more likely to happen to others rather than to oneself, is well established in health risk research. It is unknown, however, whether comparative optimism also permeates people’s health expectations and potentially behaviour during the COVID-19 pandemic. Objectives Data were collected through an international survey (N = 6485) exploring people’s thoughts and psychosocial behaviours relating to COVID‐19. This paper reports UK data on comparative optimism. In particular, we examine the belief that negative events surrounding risk and recovery from COVID-19 are perceived as more likely to happen to others rather than to oneself. Methods Using online snowball sampling through social media, anonymous UK survey data were collected from N = 645 adults during weeks 5-8 of the UK COVID-19 lockdown. The sample was normally distributed in terms of age and reflected the UK ethnic and disability profile. Findings Respondents demonstrated comparative optimism where they believed that as compared to others of the same age and gender, they were unlikely to experience a range of controllable (eg accidentally infect/ be infected) and uncontrollable (eg need hospitalization/ intensive care treatment if infected) COVID-19-related risks in the short term (P < .001). They were comparatively pessimistic (ie thinking they were more at risk than others for developing COVID-19-related infection or symptoms) when thinking about the next year. Discussion This is one of the first ever studies to report compelling comparative biases in UK adults’ thinking about COVID-19

Minimising barriers to dental care in older people

<p>Abstract</p> <p>Background</p> <p>Older people are increasingly retaining their natural teeth but at higher risk of oral disease with resultant impact on their quality of life. Socially deprived people are more at risk of oral disease and yet less likely to take up care. Health organisations in England and Wales are exploring new ways to commission and provide dental care services in general and for vulnerable groups in particular. This study was undertaken to investigate barriers to dental care perceived by older people in socially deprived inner city area where uptake of care was low and identify methods for minimising barriers in older people in support of oral health.</p> <p>Methods</p> <p>A qualitative dual-methodological approach, utilising both focus groups and individual interviews, was used in this research. Participants, older people and carers of older people, were recruited using purposive sampling through day centres and community groups in the inner city boroughs of Lambeth, Southwark and Lewisham in South London. A topic guide was utilised to guide qualitative data collection. Informants' views were recorded on tape and in field notes. The data were transcribed and analysed using Framework Methodology.</p> <p>Results</p> <p>Thirty-nine older people and/or their carers participated in focus groups. Active barriers to dental care in older people fell into five main categories: cost, fear, availability, accessibility and characteristics of the dentist. Lack of perception of a need for dental care was a common 'passive barrier' amongst denture wearers in particular. The cost of dental treatment, fear of care and perceived availability of dental services emerged to influence significantly dental attendance. Minimising barriers involves three levels of action to be taken: individual actions (such as persistence in finding available care following identification of need), system changes (including reducing costs, improving information, ensuring appropriate timing and location of care, and good patient management) and societal issues (such as reducing isolation and loneliness). Older people appeared to place greater significance on system and societal change than personal action.</p> <p>Conclusion</p> <p>Older people living within the community in an inner city area where NHS dental care is available face barriers to dental care. Improving access to care involves actions at individual, societal and system level. The latter includes appropriate management of older people by clinicians, policy change to address NHS charges; consideration of when, where and how dental care is provided; and clear information for older people and their carers on available local dental services, dental charges and care pathways.</p