Finding the balance: Living with memory loss

Since the late 1980s, it has been increasingly recognized that the experiences of people with dementia have been omitted from research in the area of dementia and memory loss. More recently, it has been accepted that people with dementia have insight into their condition and, therefore, the ability to contribute to research. A qualitative research project was undertaken with nine participants to explore the experiences and coping strategies of people with dementia. Interviews were undertaken and the data analysed using thematic analysis. Three major themes emerged: coming to terms with memory loss, maintaining control and independence, and the impact of illness on relationships. Understanding the reality for people is essential given that representations of the catastrophic impact of dementia generate high levels of anxiety and depression. Implications for nurses' practice include the need for skilled, well-paced, sensitive and ongoing information about the condition, along with the need to recognize and support the active coping strategies of people with memory loss.

Symptom prevalence and clustering of symptoms in people living with chronic hepatitis C infection

Quality of life has been shown to be poor among people living with chronic hepatitis C However, it is not clear how this relates to the presence of symptoms and their severity. The aim of this study was to describe the typology of a broad array of symptoms that were attributed to hepatitis C virus (HCV) infection. Phase I used qualitative methods to identify symptoms. In Phase 2, 188 treatment-naive people living with HCV participated in a quantitative survey. The most prevalent symptom was physical tiredness (86%) followed by irritability (75%), depression (70%), mental tiredness (70%), and abdominal pain (68%). Temporal clustering of symptoms was reported in 62% of participants. Principal components analysis identified four symptom clusters: neuropsychiatric (mental tiredness, poor concentration, forgetfulness, depression, irritability, physical tiredness, and sleep problems); gastrointestinal (day sweats, nausea, food intolerance, night sweats, abdominal pain, poor appetite, and diarrhea); algesic (joint pain, muscle pain, and general body pain); and dysesthetic (noise sensitivity, light sensitivity, skin. problems, and headaches). These data demonstrate that symptoms are prevalent in treatment-naive people with HCV and support the hypothesis that symptom clustering occurs.

Becoming pregnant: exploring the perspectives of women living with diabetes

Background The risk of adverse pregnancy outcome for women with type 1 diabetes is reduced through tight diabetes control. Most women enter pregnancy with inadequate blood glucose control. Interview studies with women suggest the concept of ‘planned’ and ‘unplanned’ pregnancies is unhelpful. Aim To explore women's accounts of their journeys to becoming pregnant while living with type 1 diabetes. Design of study Semi-structured interviews with 15 women living with pre-gestational type 1 diabetes, between 20 and 30 weeks gestation and with a normal pregnancy ultrasound scan. Setting Four UK specialist diabetes antenatal clinics. Method Interviews explored women's journeys to becoming pregnant and the impact of health care. Analysis involved comparison of women's accounts of each pregnancy and a thematic analysis. Results Women's experiences of becoming pregnant were diverse. Of the 40 pregnancies described, at least one positive step towards becoming pregnant was taken by 11 women in 23 pregnancies but not in the remaining 17 pregnancies, with variation between pregnancies. Prior to and in early pregnancy, some women described themselves as experts in their diabetes but most described seeking and/or receiving advice from their usual health professionals. Three women described pre-conception counselling and the anxiety this provoked. Conclusion For women living with type 1 diabetes each pregnancy is different. The concept of planned and unplanned pregnancy is unhelpful for designing health care. Formal preconception counselling can have unintended consequences. Those providing usual care to women are well positioned to provide advice and support to women about becoming pregnant, tailoring it to the changing needs and situation of each woman.

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.

Exploring quality of life in families of children living with and without a severe food allergy

This study aimed to explore the impact of food allergy on quality of life in children with food allergy and their primary caregivers, compared to a healthy non-food allergy comparison group. Food allergy children (n = 34) and control children (n = 15), aged 8–12, and their respective primary caregivers (n = 30/n = 13), completed generic quality of life scales (PedsQL™ and WHOQOLBREF) and were asked to take photographs and keep a diary about factors that they believed enhanced and/or limited their quality of life, over a one-week period. Questionnaire analysis showed that parents of children with food allergy had significantly lower quality of life in the social relationships domain and lower overall quality of life than the comparison parents. In contrast, children with food allergy had similar or higher quality of life scores compared to comparison children. Content analysis of photograph and diary data identified ten themes that influenced both child and parental quality of life. It was concluded that although food allergy influenced quality of life for some children, their parent's quality of life was hindered to a greater extent. The variability in findings highlights the importance of assessing quality of life in individual families, considering both children with allergies and their primary caregivers.

Living with uncertainty in the age of runtime models

Uncertainty can be defined as the difference between information that is represented in an executing system and the information that is both measurable and available about the system at a certain point in its life-time. A software system can be exposed to multiple sources of uncertainty produced by, for example, ambiguous requirements and unpredictable execution environments. A runtime model is a dynamic knowledge base that abstracts useful information about the system, its operational context and the extent to which the system meets its stakeholders' needs. A software system can successfully operate in multiple dynamic contexts by using runtime models that augment information available at design-time with information monitored at runtime. This chapter explores the role of runtime models as a means to cope with uncertainty. To this end, we introduce a well-suited terminology about models, runtime models and uncertainty and present a state-of-the-art summary on model-based techniques for addressing uncertainty both at development- and runtime. Using a case study about robot systems we discuss how current techniques and the MAPE-K loop can be used together to tackle uncertainty. Furthermore, we propose possible extensions of the MAPE-K loop architecture with runtime models to further handle uncertainty at runtime. The chapter concludes by identifying key challenges, and enabling technologies for using runtime models to address uncertainty, and also identifies closely related research communities that can foster ideas for resolving the challenges raised. © 2014 Springer International Publishing.

Families living with psychosis:a comparison of British white and Afro-Caribbean relatives

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'There's a hell of a noise':living with a hearing loss in residential care

Background: hearing loss is common in older age. Research with older people in residential care settings has identified high prevalence of hearing loss and low uptake of hearing aids. Hearing loss in these settings is associated with reduced social engagement. Although hearing aids remain the default treatment for presbyacusic hearing loss, these are not well used. We do not know what other modifiable factors contribute to communication problems for older people with hearing loss living in residential care. Objectives: to explore the factors affecting communicating with a hearing loss in residential care. Methods: an ethnographic study in two residential care homes comprised 19 sessions of observation, and in-depth interviews with 18 residents. Observations explored communication behaviour in everyday interactions, including mealtimes, structured groups and informal group activities. Interviews were informed by the observations and identified reasons for these behaviours and communication preferences. Observational data were recorded in field notes and interviews were audio-recorded and transcribed. Analysis was conducted using constant comparison methods. Results: hearing loss affected whether residents were able to access social opportunities. Two key themes influenced this (i) contextual issues compounded communication difficulties and (ii) environmental noise restricted the residents' communication choices. Problems were observed at every mealtime and during formal and informal group activities. The use of hearing aids and access to hearing services did not improve social engagement. Conclusions: environmental and social factors are key to maximising communication opportunities. Improvements to communication in residential care settings could be based on changes in these with input from residents and staff. Further work is needed to develop effective communication strategies in residential care.

Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria:a cross sectional study

Background: Sickle cell disease impacts the physical, emotional and psychological aspects of life of the affected persons, often times exposing them to disease associated stigma from the society and alters the health related quality of life (HRQoL). This study compared the HRQoL of adolescents with sickle cell disease with their healthy peers, identified socio-demographic and clinical factors impacting HRQoL, and determined the extent and effects of SCD related stigma on quality of life. Procedure: We conducted a cross-sectional survey among 160 adolescents, 80 with SCD and 80 adolescents without SCD. Socio-demographic and clinical data were collected using a pre-tested questionnaire. HRQoL was investigated using the Short Form (SF-36v2) Health Survey. SCD perceived stigma was measured using an adaptation of a perceived stigma questionnaire. Results: Adolescents with SCD have significantly worse HRQoL than their peers in all of the most important dimensions of HRQoL (physical functioning, physical roles limitation, emotional roles limitation, social functioning, bodily pain, vitality and general health perception) except mental health. Recent hospital admission and SCD related complication further lowered HRQoL scores. Over seventy percent of adolescents with SCD have moderate to high level of perception of stigmatisation. Hospitalisation, SCD complication, SCD stigma were inversely, and significantly associated with HRQoL. Conclusions: Adolescents living with SCD in Nigeria have lower health related quality of life compared to their healthy peers. They also experience stigma that impacts their HRQoL. Complications of SCD and hospital admissions contribute significantly to this impairment. Pediatr Blood Cancer 2015;62:1245-1251.