Now showing items 21-40 of 609

    • Making sense of complexity: a qualitative investigation into forensic learning disability nurses' interpretation of the contribution of personal history to offending behaviour

      Skellern, Joanne; Lovell, Andrew; University of Chester; University of Derby
      Background: There is growing recognition that an individual’s personal history can be extremely influential in shaping his/her future experience, though there has been limited exploration in the context of learning disability and offending behaviour. Method: Research questions related to participant interpretation of offending behaviour and individual and service responses. A series of focus groups comprising learning disability forensic nurses were conducted across all secure settings, high, medium and low. Results: Three themes were produced: interpreting offending behaviour; the impact of personal history; responding therapeutically. The difficulties relating to understanding the relationship between offending behaviour and personal history significantly informed the construction of the most effective therapeutic relationships. Conclusions: An increased focus on the impact of someone’s background might inform nursing as it seeks to deliver care to individuals with increasingly complex needs in a time of service transition.
    • On the road to social death: A grounded theory study of the emotional and social effects of honor killing on families—A Palestinian perspective

      Khatib, Salam; Edge, Dawn; Speed, Shaun; University Palestine; University of Manchester; University of Chester
      Despite high rates of domestic violence and increased rates of honor killing (HK) over the past decade, there is a paucity of empirical data about how HK affects family members. This study used grounded theory to explore the emotional and social effects of HK on 23 family members of murdered women and found that HK failed to achieve the restoration of honor. Following HK, families subsequently entered a protracted process of grief compounded by negative social interactions, which led to a form of “social death.” The road to social death was a painful and continuous social process, which, for many, never abated.
    • Emergency hormonal contraceptive service provision via community pharmacies in the UK: a systematic review of pharmacists’ and young women’s views, perspectives and experiences

      Chirewa, B; orcid: 0000-0003-2784-8274; Wakhisi, A (SAGE Publications, 2019-08-12)
      Aims: Unintended pregnancy among young people remains a major public health problem in the UK, despite recent evidence suggesting that the number of teenage pregnancies in England is falling. Community pharmacies have the potential to reduce health inequalities among young women through improved and appropriate access to sexual health services. This study seeks to examine the views, perceptions and experiences of young women and community pharmacists concerning emergency hormonal contraceptive (EHC) provision from community pharmacies in the UK. Methods: Six electronic databases were searched for articles published in English between 2000 and 2017. Titles and abstracts were screened by two researchers according to the inclusion criteria. Results: A total of eight papers reporting studies carried out within the UK were included. Five key themes were identified from the perspectives of young women: convenience and ease of access, embarrassment and non-judgemental services, free services, confidentiality and pharmacist being helpful. Six key themes were identified from the perspectives of the pharmacists: concerns about supply of EHC, improved access, no need for appointment, confidentiality, free EHC and training. Conclusions: The review suggests that services should be designed based on the views, perceptions and experiences of the service users and providers in order to reduce inequities to access of EHC. Pharmacists who provide EHC should continuously upgrade their knowledge base through training if the sexual health needs of the young women who access pharmacies are to be adequately met.
    • Mind your Language: Discursive Practices Produce Unequal Power and Control Over Infectious Disease: A Critical Discourse Analysis

      Mabhala, Mzwandile; Yohannes, Asmait; Massey, Alan; Reid, John; University of Chester
      Abstract Background: Power, socioeconomic inequalities, and poverty are recognized as some of the fundamental determinants of differences in vulnerability of societies to infectious disease threats. The economic south is carrying a higher burden than those in the economic north. This raises questions about whether social preventions and biomedical preventions for infectious disease are given equal consideration, and about social institutions and structures that frame the debate about infectious disease. This article examines how institutionalized ways of talking about infectious disease reinforces, creates, and sustains health inequalities. Methodology: Critical discourse analysis was considered to be epistemologically and ontologically consistent with the aims and context of this study. Results: The study examined three types of infectious disease: • Emerging infectious diseases/pathogens • Neglected tropical diseases • Vector-borne infections. Examination revealed that poverty is the most common determinant of all three. Conclusion: A sustainable reduction in infectious disease in the southern countries is most likely to be achieved through tackling socioeconomic determinants. There is a need for a change in the discourse on infectious disease, and adopt a discourse that promotes self-determination, rather than one that reinforces the hero-victim scenario and power inequalities. Keyword: Critical discourse, inequalities, infectious disease, poverty, power
    • Public health in nurse education

      Mabhala, Mzwandile; University of Chester
      This study is about PHNEs’ knowledge of teaching public health, and therefore it was considered worthwhile to explore the literature relating to the pedagogies used generally in nursing education, and to teach public health in particular. The exploration of literature revealed two broad pedagogic approaches that underpin nursing education: conventional and interpretive pedagogies. This section presents three examples of interpretive pedagogies – narrative, critical and transformative –that were found to be commonly used in public health nursing.
    • Recruitment to the “Breast—Activity and Healthy Eating After Diagnosis”(B-AHEAD) Randomized Controlled Trial

      Pegington, M; Adams, JE; Campbell, AM; Bundred, NJ; Howell, A; Howell, SJ; Speed, S; Wolstenholme, J; Harvie, MN; University Hospital of South Manchester, Manchester, UK 2 University of Manchester, Manchester, UK 3 Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK 4 Edinburgh Napier University, Edinburgh, UK 5 The Christie NHS Foundation Trust, Manchester, UK 6 University of Oxford, Oxford, UK University of Chester
      Excess weight at breast cancer diagnosis and weight gain during treatment are linked to increased breast cancer specific and all-cause mortality. The Breast—Activity and Healthy Eating After Diagnosis (B-AHEAD) trial tested 2 weight loss diet and exercise programmes versus a control receiving standard written advice during adjuvant treatment. This article identifies differences in characteristics between patients recruited from the main trial site to those of the whole population from that site during the recruitment period and identifies barriers to recruitment. A total of 409 patients with operable breast cancer were recruited within 12 weeks of surgery. We compared demographic and treatment factors between women recruited from the main trial coordinating site (n = 300) to the whole breast cancer population in the center (n = 532). Uptake at the coordinating site was 42%, comparable to treatment trials in the unit (47%). Women recruited were younger (55.9 vs 61.2 years, P < .001), more likely to live in least deprived postcode areas (41.7% vs 31.6%, P = .004), and more likely to have screen-detected cancers (55.3% vs 48.7%, P = .026) than the whole breast cancer population. The good uptake highlights the interest in lifestyle change around the time of diagnosis, a challenging time in the patient pathway, and shows that recruitment at this time is feasible. Barriers to uptake among older women and women with a lower socioeconomic status should be understood and overcome in order to improve recruitment to future lifestyle intervention programs.
    • Being healthy: A Grounded Theory study of help seeking behaviour among Chinese elders living in the UK

      Liu, Z; Beaver, K; Speed, S; Chegdu University China; UCLAN; University of Chester
      Abstract The health of older people is a priority in many countries as the world’s population ages. Attitudes towards help seeking behaviours in older people remain a largely unexplored field of research. This is particularly true for older minority groups where the place that they have migrated to presents both cultural and structural challenges. The UK, like other countries, has an increasingly aging Chinese population about who relatively little is known. This study used a qualitative grounded theory design following the approach of Glaser (1978). Qualitative data were collected using semi-structured interviews with 33 Chinese elders who were aged between 60 and 84, using purposive and theoretical sampling approaches. Data were analysed using the constant comparative method until data saturation occurred and a substantive theory was generated. ‘‘Being healthy’’ (the core category) with four interrelated categories: self-management, normalizing/minimizing, access to health services, and being cured form the theory. The theory was generated around the core explanations provided by participants and Chinese elders’ concerns about health issues they face in their daily life. We also present data about how they direct their health-related activities towards meeting their physical and psychological goals of being healthy. Their differential understanding of diseases and a lack of information about health services were potent predictors of nonhelp seeking and ‘‘self’’ rather than medical management of their illnesses. This study highlights the need for intervention and health support for Chinese elders.
    • Chinese Elders' views on their interactions in general practice: a Grounded Theory study

      Liu, Z; Beaver, K; Speed, S; Liu, Chegdu University China, Beaver, UCLAN UK, Speed University of Chester
      Objectives. The Chinese ethnic population are among the UK's largest visible minority but there is limited evidence about this population, their views about their interactions with General Practitioners (GPs) and how this impacts on their health. This study aimed to explore Chinese Elders' experiences of and attitudes towards the provision of health services in primary care. Design. The method of investigation was a Grounded Theory study using open-ended in-depth interviews. Purposive and theoretical sampling was used to recruit thirty-three Chinese Elders from Chinese communities in the North West of England. Face-to-face interviews were conducted and audio-recorded; transcripts were translated, back translated, analysed and coded by all members of the research team to identify concepts following the Grounded Theory approach. Themes were generated from the data and were used to guide the study into the theoretical sampling phase of the investigation. Results. Chinese Elders were inclined to present to GPs only when health concerns were perceived as serious. This was defined as being beyond their ability to self-manage. Elders tended to adopt self-management strategies rather than follow professional advice. This was mainly due to communication difficulties, poor understanding of the advice doctors gave, and the way that Chinese patients interpreted and used the advice they were given. Chinese Elders reported that the purpose of contacting doctors was to obtain medicines. They presumed that once medication had been prescribed their symptoms would be cured, and then they believed that they could self-manage their health, usually without further GP or other medical follow up. Conclusion. These data suggest that significant misunderstandings between Chinese Elders and GPs exist. The findings highlight the dissatisfaction expressed by Elders regarding their interactions with UK health professionals. Chinese Elders' perceptions are influenced by the way Chinese people think about health and illness, and also by their GPs' assumptions. These findings are of value to UK GPs and family doctors worldwide who are concerned with improving the quality of health services provided to an increasingly ageing migrant Chinese population.
    • Trapped in discourse? Obstacles to meaningful social work education, research and practice within the neoliberal university

      Carey, Malcolm; University of Chester
      This article appraises the role of the neoliberal university in regulating social work education, research and practice. The dominance of governments and employers in determining social work education is highlighted, alongside the ascendancy of skills-based and vocational training. Moreover, it is proposed that research, associated learning, and practice are now more often moulded around essentialist science-based, behavioural or functionalist paradigms, which fit conveniently with free market, politically conservative and authoritarian agendas. The neoliberal university is increasingly able to rationally prepare social workers to fulfil narrow ideological objectives, which includes priority given to attempts to empower, pathologise, and scientifically manage structurally disadvantaged populations from minority groups. Reductive paradigms, nevertheless, can struggle to cope with social fragmentation and diversity, with social work students often ill prepared for many of the complex challenges which they later face as qualified practitioners. Analysis for the article draws from critical theory, and it is concluded that market-based discourses and related professional paradigms - and the symbolically constituted and hyperreal fantasies which they help to maintain - can prove difficult to escape. Social work continues to face a precarious future within university settings in which free market narratives, associated norms, targets, and labour insecurity prevail.
    • Evidence-informed practice: simplifying and applying the concept for nursing students and academics

      Bettany-Saltikov, Josette; Van Schaik, Paul; McSherry, Robert; Kumah, Elizabeth; University of Chester, University of Teesside
      Abstract Background: Nurses’ ability to effectively apply evidence into practice is a critical factor in the delivery of quality patient care. Evidence-Based Practice (EBP) is recognized as the gold standard for the delivery of safe and effective person-centred care. Yet, after several decades of its inception, nurses continue to encounter difficulties in implementing the concept. Existing models for implementing EBP offer stepwise approaches, nevertheless, certain factors, such as the context of care and its mechanistic nature act as barriers to the effective and consistent implementation of EBP. It is, therefore, imperative that a solution to solving the way in which evidence is applied into practice is found. Evidence-Informed Practice (EIP) is an evolving concept. In recent times, there has been a focus on EIP as an alternative to EBP. This has generated an international debate as to which of the two concepts better facilitate the application of evidence into practice. While several EBP models and educational interventions exist, there is limited research directed towards understanding the concept of EIP and how it facilitates the application of evidence into clinical nursing practice. Aim: This article aims at clarifying the concept of EIP and provides an integrated systems-based model of EIP in facilitating the application of evidence into clinical nursing practice. This is achieved through the application of two nursing case scenarios. Case scenario 1 is about caring for a high-dependent patient and case scenario 2 involves a patient with a low white blood cell count. Method: this article takes the reader through the various factors, elements, and associated systems and processes of the EIP model. Results: The case scenarios detail the various factors and elements of the EIP model and defines how it facilitates the application of evidence into clinical nursing practice. Conclusion: The EIP model provides a framework for nurses (indeed all healthcare practitioners) to deliver clinically effective care, and to be able to defend the processes used and the service provided by referring to reliable evidence. Revised
    • Attachment Theory: Developments, Debates and Recent Applications in Social Work, Social Care and Education

      Harlow, Elizabeth; University of Chester
      Attachment theory may be considered controversial given that some of its foundational principles are contested. Not only this, it is currently being developed by insights from neuroscience, another perspective that academics have subjected to critique. Nevertheless, at the beginning of the twenty-first century in England and the United Kingdom in general, there has been a renewed interest in its explanation of child development, as well as its application in schools, social care settings and the practice of professionals such as social workers and teachers. This paper outlines the core principles of attachment theory, acknowledges some of the criticisms, then traces the ways in which the theory has been developed over time. The theory is then illustrated with a description of the ways in which it is being applied in the training of foster carers, the provision of support to adoptive parents and in the school environment.
    • A phenomenological exploration of nursing students’ experience of raising a care concern in clinical practice

      Cooper, Elizabeth (University of ChesterUniversity of Chester, 2020-01)
      UK pre-registration healthcare students are expected to raise a care concern about unsafe situations whilst in clinical practice. The UK’s NHS is in the midst of a change to an open, honest and transparent culture which responds to a professional’s concern about patient care, to improve safety and prevent harm. Central to this change is improving the experience of registered healthcare professionals whose decision to raise a care concern is influenced by the organisational culture; this can create a difficult moral choice. The experience of nursing students who decide to raise a care concern has received little attention, and this study sought to explore this under-researched area. A literature review was undertaken which identified that the experience of nursing students who had raised a care concern had not been previously examined. To guide this study, Clarke Moustakas’ (1994) transcendental phenomenological methodology was used to explore nursing students’ lived experience of raising a care concern. Ten nursing students with experience of raising a care concern in clinical practice voluntarily participated in the study. Open interviews conducted between December 2016 and October 2017 were audio recorded and transcribed, exposing individual narratives of raising a care concern in clinical practice. The transcripts were analysed to produce a composite description which summarises nursing students’ lived experience, reflecting four themes or essences: 1) patient centred concern; 2) deciding how to act; 3) having emotional strength; and 4) feedback and support. These typify what it is like for nursing students to raise a care concern whilst in clinical practice. The findings were critically examined and suggest that compassion may motivate nursing students to act when faced with an unsafe situation, seeking to stop patient harm and suffering. Recognising this moral motivation, students described the relevance of emotional strength when dealing with the emotionally complex experience of facing difficult situations, with feedback and support providing comfort plus moral and emotional satisfaction. This study also explores the implications for professional practice, specifically the impact upon future teaching and learning approaches to facilitate nursing students’ ability to detect and act upon unsafe situations; providing listening opportunities to support students in clinical practice; and valuing nursing students who raise a care concern as role models and local clinical leaders. Recommendations include a new national campaign to improve the likelihood of nursing students raising care concerns and updating UK professional guidance.
    • Predictors of mortality and survival in type 1 diabetes: a retrospective cohort study of type 1 diabetes mellitus (T1D) in the Wirral Peninsula

      Akata, Eloho (University of ChesterUniversity of Chester, 2019-05)
      Background: The prevalence of T1D is rising, despite improvements in the management of this condition. It presents a risk of premature and excess mortality, which impacts survival and life expectancy. Aim: The study aim was to assess mortality, identify predicting risk factors for mortality and survival in T1D in the Wirral. A systematic review was done to establish present current evidence of all-cause and cause-specific mortality amongst T1D patients. Methods: A retrospective cohort study design, 1786 patients diagnosed with T1D extracted from the Wirral Diabetes Register (WDR). The follow-up period was between 1st of January, 2000 to 31st December, 2012. The primary outcome measured was all-cause mortality. Results: 1458 participants with T1D meet the inclusion criteria, after a follow-up period of 12 years, 113(7.75%) deaths were recorded. While the incidence rate was steady over the study period, the prevalence rate continued to increase over the study period. Significant predictors of mortality in this cohort were age of diagnosis, duration of diabetes, HbA1c,systolic blood pressure (SBP), diastolic blood pressure (DBP), and triglyceride levels. The predicting risk gender, age at diagnosis, duration of T1D, BMI, serum creatinine levels, SBP, total cholesterol, LDL, HDL, TC\HDL, and LDL\HDL showed a linear increase in mortality risk. IMD and DBP followed a U-shaped relationship with relative and absolute mortality, while HbA1c levels reveal a sinusoidal pattern with the highest risk of mortality at the levels ≤ 5.9% (41 mmol/mol). The risk of mortality for the predicting risk factors for this study ranged between 5% and 9%. Maximal risk of mortality of 9% was recorded in the predicting risks of smoking, BMI, SBP, and DBP. The risk of mortality of 8% was recorded for IMD, serum creatinine, total cholesterol, TG, LDL\HDL ratio, and TSH. The risk of mortality of 7% was recorded for the predicting variables of HbA1c, HDL, LDL, and TC\HDL ratio. The minimum risk of mortality of 5% was recorded for the predictor variable of the duration of diabetes. The significant predictors of mortality were the age at diagnosis, duration of diagnosis, systolic and diastolic blood pressure, HbA1c. The burden of mortality rest disproportionately with females who had higher relative risk of mortality of 4 times that of their male counterparts, however, the burden of premature mortality as recorded by the years of potential life lost was slightly higher in males (1797[53.6%]) as compare to females (1553[46.4%]). Of the 113 deaths recorded for the cohort that indicated a proportion of 7.75% of the total T1D patients, records for only 37 participants were retrieved. The principal cause of death in this cohort was malignancy-related 8 deaths (21.6%), this was followed by cardiovascular disease and sepsis, each having 6 deaths (16.2%) respectively. Cerebrovascular disease accounted for 5 deaths (13.5%). Death from diabetes complications (hypoglycaemia) was recorded in 1 patient (2.7%). There were marked reductions in life expectancy for this cohort. Life expectancy at 40 years for females was to an average age mortality of 66.2 years as compared to males 78.3 years. There has been improved survival for T1D in this cohort, 77.185 years [95% CI: 75.191 – 79.179] in males and 76.011 years [95% CI: 73.169 – 78.000] in females. The systematic review highlighted increased mortality in those with T1D as compared to the general population, females showed greater risk of vascular complications as compared to the males with T1D. 35 studies were included. Results showed all-cause mortality RR 3.73 (95% CI 3.19, 4.36) compared to general population, with gender specific mortality RR 1.17 (95% CI 1.06, 1.29). For cause specific mortality risk (overall and gender specific): cardiovascular v disease RR 3.48 (95% CI 3.14, 3.86) and RR 1.41 (95% CI 0.92, 2.17); renal disease RR 1.06 (95% CI 0.89, 1.26) and RR 0.63 (95% CI 0.38, 1.04); neoplasms RR 1.03 (95% CI 0.92, 1.16) and RR 1.18 (95% CI 0.75, 1.86); cerebrovascular disease according to gender RR 0.99 (95% CI 0.66, 1.48), and accidents and suicides according to gender RR 2.30 (95% CI 1.31, 4.06). Conclusion In conclusion, the study highlighted significant mortality risk in females as compared to their male counterparts; there has been progress in the survival of patients with T1D. However, life expectancy remains reduced as compared to those without the condition. Prevalence of T1D continues to increase, and the complex interplay of the predictor variables support the need for an individualised approach to care.
    • Queering Blackpool: An Ethnographic Study

      Owens, Allan; Moran, Paul; Eadon-Sinkinson, Helen (University of ChesterUniversity of Chester, 2019-11)
      This research explores the notion of identity in relation to drag queens in the seaside town of Blackpool in the North West of England. What I describe is how this complex form of identity is composed not only from the appropriation and cultural manipulation of gendered tropes, in terms of behaviours, dress, and attitudes; but how identity is also composed from the socio-cultural place of Blackpool within the Northwest of England; and from specific genres of entertainment as they manifest in this sea-side town, which suffers from a high level of deprivation. The research employs qualitative data collection methods to build an understanding of how identity is created whilst exploring the ethnographic structure and representation of the town of Blackpool which is reflected in the analysis of the film through an autoethnographic lens. It becomes autoethnographic as it is my personal reaction to the research. I wanted to analyse my findings in terms of a qualitative visual ethnography and critical reportage, which takes the form of a short film which was an appropriate way to present the visual and socio-cultural representations of the data. Blackpool’s identity has been shaped by its raucous history. Early examples of dancing, drunken behaviour and prostitution at the Raikes Garden in the 1870s are documented by Walton (1998) as well as fairground style attractions and a rising number of cheap drinking establishments to cater for the influx of holidaymakers; all of which were difficult to police. Advertising the resort’s entertainment attracted more working-class visitors creating a more downmarket holiday resort which continues to this day. The working-class history of the town gives the resort a particular kind of focus. It also means that the town is vulnerable; it is vulnerable to economic market change, problems of poverty, and unemployment. Therefore, this thesis seeks to discuss the question: how is Blackpool’s social history reflected in both the town and drag performance spaces? This thesis uses the theory of Bakhtin’s Carnival (1984) to highlight certain aspects of the film in order to present the research through an appropriate theoretical lens as well as appropriate supporting literature throughout. I felt it appropriate to use Bakhtin, since even at the level of a superficial joke, Bakhtin’s work is located in celebration, freedom, holiday and the superficial preoccupations of historic and contemporary Blackpool. More significantly perhaps Bakhtin was interested in how the world, in these contexts, can be turned upside down, and what it means for order and identity to be essentially forms of performativity, a theme central to my own work around identity and place with respect to Blackpool. Due to the nature and disclosure of some participants I decided to present the data through the form of a film. Through the initial interview process, it became apparent that some identities needed to be hidden as a means of protecting both the participants and their families as sensitive details were 11 discussed, however their stories still needed to be told. To both explore and mitigate the problems that I have mentioned, visual ethnography seemed to offer both a solution and an interesting way to convey meaning that would otherwise be lost in text. By presenting the data in this way I am creating characters. This becomes unavoidable, rather like the drag queen performers who create characters, therefore I am paralleling that. By creating the characters that are heard and deliberately filming various aspects of Blackpool, I was able to join both person and place to create a visual means that represents the journey and exploration that I went through as a researcher and which further presents the data, as self and other, in the most appropriate way. When I use the word ‘trans,’ I am referring to transvestites, transsexuals and transgender people. Throughout this written part of this thesis, I will refer to the visual aspect as ‘the film.’
    • ‘Being different’: realities of life experiences as constructed by persons with albinism in Nigeria

      Mabhala, Andi; Keeling, June; Buck, Gill; Keen, Adam; Olagunju, Adeolu (University of ChesterUniversity of Chester, 2019-08)
      In Nigeria, persons with albinism (PWA) continue to face a higher burden of health and social challenges in the society compared with the general population. PWA experience multi-faceted social injustices such as stigma, discrimination and exclusion from education, employment and social participation. These injustices are driven by the Nigerian society because of sociocultural perceptions and stereotypes associated with albinism which can be attributable to the lack of adequate understanding of the condition. This research aimed to understand how the realities of being a PWA in Nigeria could be conceptualised based on their life experiences to develop a substantive theory of their social wellbeing status. By adopting constructivist grounded theory methodology, forty-two in-depth interviews were conducted amongst eleven PWA. Analysis identified three categories each of which embodies the multiple realities of disadvantages and exclusion experienced within the home, schooling, working and social environments at different stages of life. The concept of ‘Being different’ emerged from these categories to offer a theoretical explanation of what it means to be a PWA in Nigeria. The realities of ‘being different’ constitute processual social injustices for PWA because of how the Nigerian society is socio-culturally and institutionally configured to magnify the limitations of albinism above the rights and social liberties of the individual. This research identified albinism as a disability and concluded that PWA are owed a moral and ethical obligation by the Nigerian society for them to be able to access the liberties and support necessary to secure their health and social wellbeing. The sustainable fulfilment of this moral and ethical obligation necessitates an inter-institutional collaboration and vigilance that should address the layers of injustices meted to PWA. This study adds an original contribution to knowledge by offering a theoretical concept to qualify the social status of PWA in Nigeria, and thus, could be useful to inform appropriate health and social care interventions.

      Taylor, Louise; Bailey, Jan; Kingston, Paul; Eost-Telling, Charlotte (2019-11-08)
      AbstractThis presentation reflects on self-written narratives from respondents to a mass observation directive, focusing on the experiences of growing older. Narrative methods are theoretically and methodologically diverse, and are helpful in social research to understand events or happenings in human lives. This data presents accounts from a heterogeneous sample in the form of self-penned responses. These experience-centred narratives bring stories of personal understanding into being by means of the first person description of past, present, future or imaginary experiences. This presentation will focus on the findings with reference to physical and mental impacts, both real and anticipated. We will also explore themes arising from the data including gender differences, age-cohort effects and stigma. The data can be used to inform Health and Social Care education and practice, particularly in co-producing appropriate person-centred services with older people.
    • Prophylactic Treatment in People with Severe Hemophilia B in the US: An Analysis of Real-World Healthcare System Costs and Clinical Outcomes

      Noone, Declan; Pedra, Gabriel; Asghar, Sohaib; O'Hara, Jamie; Sawyer, Eileen K; Li, Nanxin (Nick) (American Society of Hematology, 2019-11-13)
      Introduction The treatment paradigm for people with severe hemophilia B in the US typically involves prophylaxis with factor IX (FIX) replacement therapy, the primary aim of which is to provide sufficient FIX levels to reduce the frequency of bleeding events. The clinical benefits of FIX prophylaxis are well understood, however the cost of FIX products as well as costs associated with healthcare resource utilization present a significant burden to the healthcare system. Substantive costs may also accrue in patients who continue to bleed while on prophylaxis, due to the impact on both short and long-term joint-related outcomes. In the absence of existing data in the US, the 'Cost of Hemophilia Across the USA: a Socioeconomic Survey' (CHESS US) study was conducted to establish a population-based estimate of the real-world US healthcare system burden associated with severe hemophilia. Using data drawn from the CHESS US study, this analysis examines the real-world healthcare system costs and clinical outcomes of people with severe hemophilia B on FIX prophylaxis. Methods CHESS US, a retrospective, cross-sectional dataset of adults with severe hemophilia in the USA, gathered information on patient cost via a patient record form. Data on the following parameters are included in this analysis: FIX consumption, annualized bleeding rate (ABR), the presence of one or more chronically damaged joints ("problem joint"), as well as costs associated with annual (prophylactic) factor consumption and hospitalizations (i.e., number of admissions, number of day cases, total inpatient days, and total intensive care unit [ICU] days). All variables report retrospective data of the 12 months prior to enrolment in the study. Results are presented as mean (± standard deviation) or N (%). Results In total, 132 of 576 patients profiled in the CHESS US study had severe hemophilia B. Among them, 77 patients were on FIX prophylaxis, of whom 44 patients reported FIX dosing regimen and were included in the current analyses. Among them, 20 patients were treated with conventional FIX and 24 patients with extended half-life (EHL) FIX products. The cohort has a mean age of 27.64 (± 11.05) and mean weight (kg) of 75.71 (± 13.41). In the last 12 months, the mean number of international units (IU) prescribed for FIX prophylaxis across the full cohort was 257,216 IU (± 213,591), with an associated annual cost of $610,966 (± $495,869). Among patients treated with conventional FIX, mean prescribed FIX was 287,141 IU (± 264,906) at an annual cost of $397,491 (± $359,788), while patients treated with EHL FIX reported a mean prescribed FIX of 232,278 IU (± 160,914) at an annual cost of $788,861 (± $529,258). The cohort reported a mean ABR of 1.73 (± 1.39); 8 (18%) were reported to have a target joint meeting the International Society on Thrombosis and Haemostasis (ISTH) definition; and 11% were reported to have had at least one chronically damaged joint (i.e., problem joint). Healthcare resource utilization associated with bleed events were reported as follows: hospital admissions days [0.18 (± 0.62)]; inpatient days [0.34 (± 1.22)]; and ICU days [0.23 (± 0.86)]. The direct medical cost to the healthcare system was $2,885 (± $7,857; excluding FIX cost) and $614,886 (± $498,839; including FIX cost). Discussion Data from the CHESS US study showed substantial costs and resource utilization among patients with severe hemophilia B receiving FIX prophylaxis, of which the cost of FIX replacement therapy constituted most of the total cost to healthcare system. Although the ABR observed in the analysis population was low, bleed-related hospitalizations comprised a significant non-drug cost to the healthcare system. A proportion of patients also still experienced joint arthropathy. Such substantial clinical and economic burden highlights that unmet needs remain in patients with severe hemophilia B on FIX prophylaxis in the US. Disclosures Noone: HCD Economics: Employment. Pedra:HCD Economics: Employment. Asghar:HCD Economics: Employment. O'Hara:HCD Economics: Employment, Equity Ownership. Sawyer:uniQure Inc.: Employment. Li:uniQure Inc.: Employment.
    • The clusters and frequencies of adverse social conditions amongst the homeless people

      Mabhala, Mzwandile A. (Oxford University Press (OUP), 2019-11-13)
      Abstract Background A growing body of evidence identifies interconnected social indicators that can lead to homelessness. Several studies identify a catalogue of social disadvantages that starts from childhood and persist throughout the life course that leads to homelessness. Qualitative evidence indicates that their adverse childhood experiences(ACEs) and damage that occurred to them as children had major influences on their ability to negotiate their way through the education system, gain and sustain employment, make appropriate choices of social networks, and form and maintain healthy relationships as adults. However, very little research seeks to objectively investigate these issues. This study aims to use the cross-sectional study to document the cluster and frequency of adverse social conditions amongst the homeless people in North West England in 2019. Methods The study design was cross-sectional. We used IBM SPSS 21, with a significance level set at p &lt; 0.05, CI 95% to analyse the data. Results The mean age was 39.12, range 21-64, 90.5% male. 52%(χ2= 33.4, df = 1, p = 0.001) described their health as poor, 90% (χ2= 61.85, df = 2, p = 0.001) smoked cigarette daily, 83.3% (χ2= 76.4, df = 3, p = 0.001) used drugs daily, 78.6% (χ2= 13.7, df = 1, p = 0.001) saw a doctor in preceding 6 months, 63.4% (χ2= 73.8, df = 3, p = 0.001) left school before age 16; 26.2% (χ2= 37.7, df = 3, p = 0.001) left school at 16, 11.9% (χ2= 33.1, df = 10, p = 0.001) encounterd criminal justice system at the age of 11, 28.6% (χ2= 60.8, df = 8, p = 0.001) had reprimand/caution or conviction at 17. ACES: 57% (χ2= 34.7, df = 3, p = 0.001) experienced humiliation by adults in their household; 54% (χ2= 30.7, df = 3, p = 0.001) threatening behaviour, 50% (χ2= 26.0, df = 3, p = 0.001) physical violence in their household. Conclusions These early stage preliminary results indicate that adverse social circumstances that occur in childhood are disproportionately represented in homeless population. Key messages Homelessness is more complex than the absence of accomodation. Adverse social circumstances that occur in childhood are disproportionately represented in homeless population.
    • Being at the Bottom Rung of the Ladder in an Unequal Society: A Qualitative Analysis of Stories of People without a Home

      Mabhala, Mzwandile A.; Yohannes, Asmait; Asmait Skin Care
      Background: Homelessness is rising in the United Kingdom, despite investment in measures to eradicate it made by the government and charity organisations. Aim: The aim is to examine the stories of homeless people in order to document their perceptions of their social status, the reasons that led to their homelessness, and propose a conceptual explanation. Method: We conducted 26 semi-structured interviews in three centres for homeless people in Cheshire, North West of England. Results: Three categories—education, employment, and health—emerged from the data and provided a theoretical explanation for the reasons that led to their homelessness. These are vital not only for the successful negotiation of one’s way out of homelessness, but also for achieving other social goods, including social connections, social mobility, and engaging in positive social relationships. Conclusion: Participants catalogued the adverse childhood experiences, which they believe limited their capacity to meaningfully engage with the social institution for social goods, such as education, social services, and institutions of employment. Since not all people who have misfortunes of poor education, poor health, and loss of job end up being homeless, we contend that a combination of these with multiple adverse childhood experiences may have weakened their resilience to traumatic life changes, such as loss of job and poor health.
    • Achieving the unimaginable: Health equity in haemophilia

      Skinner, Mark W.; orcid: 0000-0002-0934-0680; Nugent, Diane; Wilton, Pam; O’Mahony, Brian; Dolan, Gerry; O’Hara, Jamie; Berntorp, Erik; orcid: 0000-0002-1337-7195 (Wiley, 2019-11-13)