The experience of living with age related macular degeneration:A longitudinal study into the impact of age related macular degeneration on quality of life

In this thesis I contribute to the understanding of the experience of living with Age-Related Macular Degeneration (AMD) and its impact on quality of life through the use of a pragmatically guided mixed methods approach. AMD is a condition resulting in the loss of central vision in old age which can have a huge impact on the lives of patients. This thesis includes: literature reviewing; qualitative meta-synthesis; surveys and descriptive statistics; observation; and analysis of in-depth interviewing, in order to build a picture of what it is like for older people to live with AMD. I present the findings from six separate studies each designed to answer specific research questions. I begin with a mixed methods study to determine how well the most commonly used measure of quality of life for AMD patients’ represents patient experiences. I then go on to investigate the experiences of patients with AMD through a meta-synthesis of qualitative research and finally present four of my own empirical studies three of which investigate the experiences of patients with different types of AMD: early dry AMD, treatable wet AMD and advanced wet AMD and the final study investigates what it is like for a couple living together with AMD. Throughout the qualitative studies I use Interpretative Phenomenological Analysis (IPA) to develop an understanding of the experiences and life contexts of patients with AMD. Through rigorous analysis, I identify a range of themes which highlight the shared and divergent experiences of individuals with AMD and the need to acknowledge patients’ past, present and potential future life contexts and experiences when providing services to older people with AMD. I relate the findings of the six studies to the wider psychological literature on chronic illness and make recommendations for services for patients with AMD to be provided holistically within a lifeworld-led health care model.

Regional policy variation in Germany:the diversity of living conditions in a 'unitary federal state'

The German federal system is conventionally understood as highly co-ordinated between federal and regional governments and aimed at producing a 'uniformity' of living conditions. This view has increasingly been challenged as new work focuses on innovation and diversity at the regional level, and also as a consequence of reforms to the federal system that took place in 2006. This contribution attempts to establish a more systematic basis for assessing and explaining the scope and significance of regional policy variation in Germany. Our findings suggest that - despite institutional structures that foster intense co-ordination between central and regional governments and apparent popular preferences for uniformity of policy outcomes - the extent of policy variation in Germany is much greater than conventionally understood and driven both by structural factors and partisan choices at the regional level. © 2014 © 2014 Taylor & Francis.

Encouraging the intellectual craft of living research:tattoos, theory and time

This chapter contributes to the anthology on learning to research - researching to learn because it emphases a need to design curricula that enables living research, and on-going researcher development, rather than one that restricts student and staff activities, within a marketised approach towards time. In recent decades higher education (HE) has come to be valued for its contribution to the global economy. Referred to as the neo-liberal university, a strong prioritisation has been placed on meeting the needs of industry by providing a better workforce. This perspective emphasises the role of a degree in HE to secure future material affluence, rather than to study as an on-going investment in the self (Molesworth , Nixon & Scullion, 2009: 280). Students are treated primarily as consumers in this model, where through their tuition fees they purchase a product, rather than benefit from the transformative potential university education offers for the whole of life.Given that HE is now measured by the numbers of students it attracts, and later places into well-paid jobs, there is an intense pressure on time, which has led to a method where the learning experiences of students are broken down into discrete modules. Whilst this provides consistency, students can come to view research processes in a fragmented way within the modular system. Topics are presented chronologically, week-by-week and students simply complete a set of tasks to ‘have a degree’, rather than to ‘be learners’ (Molesworth , Nixon & Scullion, 2009: 277) who are living their research, in relation to their own past, present and future. The idea of living research in this context is my own adaptation of an approach suggested by C. Wright Mills (1959) in The Sociological Imagination. Mills advises that successful scholars do not split their work from the rest of their lives, but treat scholarship as a choice of how to live, as well as a choice of career. The marketised slant in HE thus creates a tension firstly, for students who are learning to research. Mills would encourage them to be creative, not instrumental, in their use of time, yet they are journeying through a system that is structured for a swift progression towards a high paid job, rather than crafted for reflexive inquiry, that transforms their understanding throughout life. Many universities are placing a strong focus on discrete skills for student employability, but I suggest that embedding the transformative skills emphasised by Mills empowers students and builds their confidence to help them make connections that aid their employability. Secondly, the marketised approach creates a problem for staff designing the curriculum, if students do not easily make links across time over their years of study and whole programmes. By researching to learn, staff can discover new methods to apply in their design of the curriculum, to help students make important and creative connections across their programmes of study.

‘Everything’s from the inside out with PCOS’:exploring women’s experiences of living with Polycystic Ovary Syndrome (PCOS) and co-morbidities through Skype™ interviews

Polycystic ovary syndrome is an endocrine disorder affecting 1 in 10 women. Women with polycystic ovary syndrome can experience co-morbidities, including depressive symptoms. This research explores the experience of living with polycystic ovary syndrome and co-morbidities. Totally, 10 participants with polycystic ovary syndrome took part in Skype™ interviews and analysed using thematic analysis. Four themes emerged from the data: change (to life plans and changing nature of condition); support (healthcare professionals, education and relationships); co-morbidities (living with other conditions and depression, self-harm and suicidal ideation) and identity (feminine identity and us and them). The findings highlight the need for screening of women with polycystic ovary syndrome for depressive disorders.

Designing mobile technologies for individuals with disabilities

While mobile devices offer many innovative possibilities to help increase the standard of living for individuals with disabilities and other special needs, the process of developing assistive technology, such that it will be effective across a group of individuals with a particular disability, can be extremely challenging. This chapter discusses key issues and trends related to designing and evaluating mobile assistive technology for individuals with disabilities. Following an overview of general design process issues, we argue (based on current research trends) that individuals with disabilities and domain experts be involved throughout the development process. While this, in itself, presents its own set of challenges, many strategies have successfully been used to overcome the difficulties and maximize the contributions of users and experts alike. Guidelines based on these strategies are discussed and are illustrated with real examples from one of our active research projects.

Designing mobile technologies for individuals with disabilities

While mobile devices offer many innovative possibilities to help increase the standard of living for individuals with disabilities and other special needs, the process of developing assistive technology, such that it will be effective across a group of individuals with a particular disability, can be extremely challenging. This chapter discusses key issues and trends related to designing and evaluating mobile assistive technology for individuals with disabilities. Following an overview of general design process issues, we argue (based on current research trends) that individuals with disabilities and domain experts be involved throughout the development process. While this, in itself, presents its own set of challenges, many strategies have successfully been used to overcome the difficulties and maximize the contributions of users and experts alike. Guidelines based on these strategies are discussed and are illustrated with real examples from one of our active research projects.

Living together with age related macular degeneration:an interpretative phenomenological analysis of sense-making within a dyadic relationship

In this article, we present an idiographic analysis of a couple's experience of living and coming to terms with age-related macular degeneration. Interpretative phenomenological analysis was used to explore three joint interviews, conducted over an 18-month period, with a married couple (aged 82 and 77 years) both living with age-related macular degeneration. Three themes are discussed: the disruption of vision impairment, managing mutual deterioration and resilience through togetherness. We discuss the existential challenges of vision impairment and consider the applicability of Galvin and Todres' typology of well-being as a means of understanding well-being in older adults.

Living well to the end:a phenomenological analysis of life in extra care housing

OBJECTIVES: To understand older adults' experiences of moving into extra care housing which offers enrichment activities alongside social and healthcare support. DESIGN: A longitudinal study was conducted which adopted a phenomenological approach to data generation and analysis. METHODS: Semi-structured interviews were conducted in the first 18 months of living in extra care housing. Interpretative phenomenological analysis was used because its commitment to idiography enabled an in-depth analysis of the subjective lived experience of moving into extra care housing. Themes generated inductively were examined against an existential-phenomenological theory of well-being. RESULTS: Learning to live in an extra care community showed negotiating new relationships was not straightforward; maintaining friendships outside the community became more difficult as capacity declined. In springboard for opportunity/confinement, living in extra care provided new opportunities for social engagement and a restored sense of self. Over time horizons began to shrink as incapacities grew. Seeking care illustrated reticence to seek care, due to embarrassment and a sense of duty to one's partner. Becoming aged presented an ontological challenge. Nevertheless, some showed a readiness for death, a sense of homecoming. CONCLUSIONS: An authentic later life was possible but residents required emotional and social support to live through the transition and challenges of becoming aged. Enhancement activities boosted residents' quality of life but the range of activities could be extended to cater better for quieter, smaller scale events within the community; volunteer activity facilitators could be used here. Peer mentoring may help build new relationships and opportunities for interactive stimulation. Acknowledging the importance of feeling-empathic imagination-in caregiving may help staff and residents relate better to each other, thus helping individuals to become ontologically secure and live well to the end.