Chronic illness in non-heterosexual contexts: towards a critical LGBTQ health psychology

In this thesis, I contribute to the expansion of lesbian, gay, bisexual, trans and queer (LGBTQ) psychology by examining chronic illness within non-heterosexual contexts. Chronic illness, beyond the confines of HIV/AIDS, has been a neglected topic in LGBTQ psychology and sexual identity is often overlooked within health psychology. When the health of lesbian, gay and bisexual (LGB) people has been considered there has been an over-reliance on quantitative methods and comparative approaches which seek to compare LGB people?s health to their heterosexual counterparts. In contrast, I adopt a critical perspective and qualitative methods to explore LGBTQ health. My research brings together ideas from LGBTQ psychology and critical health psychology to explore non-heterosexuals? experiences of chronic illness and the discursive contexts within which LGB people live with chronic health conditions. I also highlight the heteronormativity which pervades academic health psychology as well as the „lay? health literature. The research presented in this thesis draws on three different sources of qualitative data: a qualitative online questionnaire (n=190), an online discussion within a newsgroup for people with diabetes, and semi-structured interviews with 20 LGB people with diabetes. These data are analysed using critical realist forms of thematic analysis and discourse analysis. In the first analytic chapter (Chapter 3), I report the perspectives of LGB people living with many different chronic illnesses and how they felt their sexuality shapes their experiences of illness. In Chapter 4, I examine heterosexism within an online discussion and consider the ways in which sexuality is constructed as (ir)relevant to a diabetes support forum. In Chapter 5, I analyse LGB people?s talk about the support family and partners provide in relation to their diabetes and how they negotiate wider discourses of gender, sexuality and individualism. In Chapter 6 I explore how diabetes intersects with gay and bisexual men?s sex lives. In the concluding chapter, I discuss the contributions of my research for a critical LGBTQ health psychology and identify some possible areas for future research.

Contextualising accounts of illness:Notions of responsibility and blame in white and South Asian respondents' accounts of diabetes causation

We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed subtle, but important, differences in the ways in which these respondent groups attributed responsibility and blame for developing the disease. Whereas Pakistani and Indian respondents tended to externalise responsibility, highlighting their life circumstances in general and/or their experiences of migrating to Britain in accounting for their diabetes (or the behaviours they saw as giving rise to it), white respondents, by contrast, tended to emphasise the role of their own lifestyle 'choices' and 'personal failings'. In seeking to understand these differences, we argue for a conceptual and analytical approach which embraces both micro- (i.e. everyday) and macro- (i.e. cultural) contextual factors and experiences. In so doing, we provide a critique of social scientific studies of lay accounts/understandings of health and illness. We suggest that greater attention needs to be paid to the research encounter (that is, to who is looking at whom and in what circumstances) to understand the different kinds of contexts researchers have highlighted in presenting and interpreting their data. © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

Chronic illness in non-heterosexual contexts: an online survey of experiences

In this article we contribute to the expansion of lesbian, gay, bisexual, transgender and queer (LGBTQ) health psychology beyond the confines of sexual health by examining the experiences of lesbian, gay and bisexual people living with non-HIV related chronic illness. Using a (predominantly) qualitative online survey, the perspectives of 190 LGB people with 52 different chronic illnesses from eight countries were collected. The five most commonly reported physical conditions were arthritis, hypertension, diabetes, asthma and chronic fatigue syndrome. Our analysis focuses on four themes within participants’ written comments: (1) ableism within LGBT communities; (2) isolation from LGBT communities and other LGB people living with chronic illness; (3)heteronormativity within sources of information and support and; (4) homophobia from healthcare professionals. We conclude by suggesting that LGBTQ psychology could usefully draw on critical health psychology principles and frameworks to explore non-heterosexual’s lived experiences of chronic illness, and also that there remains a need for specifically targeted support groups and services for LGB people with chronic illnesses.

Decompression illness and its regulation in contemporary UK tunnelling : an engineering perspective:an engineering perspective

This thesis records the findings of a retrospective study of decompression illness (DCI) in the UK compressed air tunnelling industry since the mid-1980s. The thesis describes how the study arose, its scope and objectives, along with an overview of tunnelling and shaft-sinking. The development of compressed air working techniques is reviewed along with a description of decompression practice and DCI, and an outline of relevant legislation and guidance. The acquisition and manipulation of data to form a number of databases and spreadsheets on which the analysis was performed is discussed. That analysis examined measures of DCI incidence and quantified that incidence using these measures. Also considered is the variation in tolerance and susceptibility to DCI in the workforce, and the phenomenon of acclimatisation. An examination of the extent to which men worked on multiple contracts and the variation in their susceptibility to DCI on these contracts is included. Options are then considered for reducing the incidence of DCI. The first retained air-only decompression through the application of restrictions on exposure. The second related to the use of oxygen decompression. Finally the adequacy of the existing Regulations and Guidance is considered and recommendations made for possible changes to them, arising from the study. The main conclusions are that a number of measures of DCI incidence were identified, some more appropriate than others and that the incidence of DCI when so measured was high, disproportionately so in shift workers. No reasonably practicable restrictions on exposure were identified which would have allowed the retention of air-only decompression. Oxygen decompression looked promising but had yet to be used sufficiently extensively to generate enough data for analysis. Recommendations included one that an alternative technique for monitoring the effectiveness of decompression should be developed. The thesis ends with recommendations for further research.

The Maudsley Early Onset Schizophrenia Study:The effect of age of onset and illness duration on fronto-parietal gray matter

Objective: In Early Onset Schizophrenia (EOS; onset before the 18th birthday) late brain maturational changes may interact with disease mechanisms leading to a wave of back to front structural changes during adolescence. To further explore this effect we examined the relationship between age of onset and duration of illness on brain morphology in adolescents with EOS. Subjects and methods: Structural brain magnetic resonance imaging scans were obtained from 40 adolescents with EOS. We used Voxel Based Morphometry and multiple regressions analyses, implemented in SPM, to examine the relationship between gray matter volume with age of onset and illness duration. Results: Age of onset showed a positive correlation with regional gray matter volume in the right superior parietal lobule (Brodmann Area 7). Duration of illness was inversely related to regional gray matter volume in the left inferior frontal gyrus (BA 11/47). Conclusions: Parietal gray matter loss may contribute to the onset of schizophrenia while orbitofrontal gray matter loss is associated with illness duration. © 2008 Elsevier Masson SAS. All rights reserved.

Illness perceptions, beliefs and prevention of Type 2 Diabetes among British Pakistani mothers and young British Pakistani women

The prevalence rates of type2 diabetes mellitus (T2DM) continues to rise among British Pakistanis. The aim of this project was to explore T2DM perceptions and any preventative intentions among British Pakistani women and to discover whether they are doing anything to prevent the onset in themselves and their families. Initially a systematic review was conducted to investigate 20 existing prevention interventions and to assess their effectiveness (n=12,419). Mixed methods approach was adopted and three studies were conducted. The first study consisted of two focus groups with T2DM mothers (n=8) and three focus groups with non-T2DM mothers (n=17). The second study consisted of four focus groups young British Pakistani females (n=11). All focus groups were transcribed verbatim and analysed using thematic analysis. Following these a quantitative study was undertaken comprising of a questionnaire survey; 12 prevention-perception items (derived from the qualitative data) and the Illness-Perception Questionnaire Revised (IPQ-R) using participants from the same populations: T2DM mothers (n=41), non-T2DM mother (n=47) and young women (n=42). Results were analysed using multiple/hierarchical regression. The systematic review highlighted that the most effective prevention programmes focussed on behaviour and lifestyle with a combination of support and education to participants. The research studies demonstrated that T2DM was seen as an older person’s disease to be dealt with if/when it happens. T2DM mothers demonstrated knowledge and prevention understanding. There were non-significant relationships between prevention perceptions and T2DM illness perceptions across all three groups. The finding of this thesis emphasised that lifestyle interventions are crucial to aiding T2DM preventions as a good healthy diet and regular physical activity are the key components to T2DM prevention, and the importance of personal experience in perceived severity and lay-beliefs regarding T2DM and on family/cultural influences in British-Pakistanis. The findings of this project can be used to design culturally specific interventions towards preventing T2DM in the British Pakistani community.

Can illness perceptions and coping predict psychological distress amongst allergy sufferers?

Objective. The aim of the present study was to measure the extent to which illness perceptions and coping strategies are associated with the levels of psychological distress amongst allergy sufferers. Design and method. One hundred and fifty-six allergy sufferers (all members of Allergy U.K.) completed a postal survey consisting of the Revised Illness Perception Questionnaire (IPQ-R) and the COPE. Psychological distress was measured using the General Health Questionnaire (GHQ-28) and the Perceived Stress Scale (PSS). Results. Multiple regression analyses indicated that illness perceptions explained between 6 and 26% of variance on measures of psychological distress; coping strategies explained between 12 and 25%. A strong illness identity and emotional representations of the allergy were associated with higher levels of psychological distress; as were less adaptive coping strategies such as focusing on and venting of emotions. Strong personal control beliefs were associated with the lower levels of distress, as were adaptive coping strategies such as positive reinterpretation and growth. Coping partially mediated the link between the illness perceptions and the outcome; however, illness identity, emotional representations and personal control retained an independent significant association with psychological distress. Conclusion. The findings support a role for illness perceptions and coping in explaining levels of psychological distress amongst allergy sufferers. This has implications for targeted health interventions aimed at reducing the strength of illness identity and emotional representations and increasing a sense of control and the use of more adaptive coping strategies.

Illness perceptions predict reassurance following a negative exercise stress testing result

Many patients are not reassured after receiving normal results following cardiac investigations. While previous studies have shown anxiety to be a contributing factor, little research has investigated the influence of patients’ illness perceptions on reassurance. In this study we investigated whether illness perceptions predicted patients’ reassurance following normal exercise stress test results. Sixty-two chest pain patients without prior diagnosed cardiac pathology completed questionnaires assessing anxiety and illness perceptions prior to exercise stress testing. Patients completed a reassurance questionnaire immediately following their appointment and again one month later. Illness perceptions (consequences, timeline, identity, illness concern, and emotional effect) but not anxiety, significantly predicted reassurance immediately following testing. We found both state anxiety and illness perceptions to predict reassurance one month later. After controlling for anxiety, longer timeline and lower treatment control beliefs predicted lower reassurance. The results suggest that an intervention targeting patients who have high anxiety and negative illness perceptions prior to testing may improve reassurance and decrease disability and the subsequent use of medical care.

Patients' and health professionals' views on primary care for people with serious mental illness:focus group study

Objective: To explore the experience of providing and receiving primary care from the perspectives of primary care health professionals and patients with serious mental illness respectively. Design: Qualitative study consisting of six patient groups, six health professional groups, and six combined focus groups. Setting: Six primary care trusts in the West Midlands. Participants: Forty five patients with serious mental illness, 39 general practitioners (GPs), and eight practice nurses. Results: Most health professionals felt that the care of people with serious mental illness was too specialised for primary care. However, most patients viewed primary care as the cornerstone of their health care and preferred to consult their own GP, who listened and was willing to learn, rather than be referred to a different GP with specific mental health knowledge. Swift access was important to patients, with barriers created by the effects of the illness and the noisy or crowded waiting area. Some patients described how they exaggerated symptoms ("acted up") to negotiate an urgent appointment, a strategy that was also employed by some GPs to facilitate admission to secondary care. Most participants felt that structured reviews of care had value. However, whereas health professionals perceived serious mental illness as a lifelong condition, patients emphasised the importance of optimism in treatment and hope for recovery. Conclusions: Primary care is of central importance to people with serious mental illness. The challenge for health professionals and patients is to create a system in which patients can see a health professional when they want to without needing to exaggerate their symptoms. The importance that patients attach to optimism in treatment, continuity of care, and listening skills compared with specific mental health knowledge should encourage health professionals in primary care to play a greater role in the care of patients with serious mental illness.

'Listen to my madness':understanding the experiences of people with serious mental illness

This article explores the salience of disability theory for understanding the experiences of people with serious mental illness. Drawing on data from a focus group study, we suggest that users experience both impairment (as embodied irrationality) which can, in itself, be oppressive, and also have to manage their lives within a largely disabling society. We outline some of the strategies adopted by users to manage their situation and ensure they access and receive health services, and illustrate how these are a result of the complex relationship between disability and impairment. We suggest that using a framework of the social model of disability provides a useful way of understanding and making sense of the experience of users with serious mental illness. © Blackwell Publishing Ltd/Foundation for the Sociology of Health & Illness 2005.

The role of illness perceptions:psychological distress and treatment seeking delay in patients with genital warts.

This study examined the relationships between illness perceptions, psychological distress and treatment-seeking delay in genital warts patients. Sixty-six genital warts patients were approached while attending a sexual health clinic. They completed a questionnaire assessing their illness perceptions, psychological distress and treatment-seeking delay. Negative perceptions of illness consequences and control and a perceived cyclical timeline were associated with increased psychological distress. Perceived illness consequences maintained significance in a multiple regression equation, which accounted for 25% variance in distress. Depression was associated with treatment-seeking delay (r = 0.28, P = 0.03). In conclusion, illness perceptions may play an important role in the experience of psychological distress in genital warts patients. The implications of these findings for the design of health-care interventions are discussed.

Managing crisis:the role of primary care for people with serious mental illness

Background and Objectives: More than 30% of patients with serious mental illness in the United Kingdom now receive all their health care solely from primary care. This study explored the process of managing acute mental health crises from the dual perspective of patients and primary care health professionals. Methods: Eighteen focus groups involving 45 patients, 39 general practitioners, and eight practice nurses were held between May and November 2002 in six Primary Care Trusts across the British West Midlands. The topic guide explored perceptions of gold standard care, current issues and critical incidents in receiving/providing care, and ideas on improving services. Results: Themes relevant to the management of acute crisis included issues of process, such as access, advocacy, communication, continuity, and coordination of care; the development of more structured care that might reduce the need for crisis responses; and issues raised by the development of a more structured approach to care. Conclusions: Access to services is a complicated yet crucial feature of managing care in a crisis, with patients identifying barriers at the level of primary care and health professionals at the interface with secondary care. The development of more structured systems as a solution may generate its own ethical and pragmatic challenges.

Cancer as a chronic illness? Reconsidering categorization and exploring experience

This article explores the different ways that user experience is defined and conceptualized, and the various policy and professional contexts in which emphasis is placed on exploring users’ views. We go on to examine the experience of cancer as a chronic illness and argue that, although there are common features in the experience of cancer and people with chronic illness, the differences are too significant and cancer should not be defined as a chronic condition. We conclude with a consideration of the methodological difficulties of documenting user experience and identify the need for further methodological development.