Living Invisible: HTLV-1-Infected Persons and the Lack of Care in Public Health

Introduction: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients' needs and emotional experiences. Objective: To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes. Methods: A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil. Results and Discussion: The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections. Conclusions: Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an "invisibility" of their complex demands and feel that their rights as citizens are ignored.

The response to and effects of microcomputers in the education sector:the introduction of an innovation in local authority secondary schools

The study addresses the introduction of an innovation of new technology into a bureaucratic profession. The organisational setting is that of local authority secondary schools at a time at which microcomputers were being introduced in both the organisational core (for teaching) and its periphery (school administration). The research studies innovation-adopting organisations within their sectoral context; key actors influencing the innovation are identified at the levels of central government, local government and schools.A review of the literature on new technology and innovation (including educational innovation), and on schools as organisations in a changing environment leads to the development of the conceptual framework of the study using a resource dependency model within a cycle of the acquisition, allocation and utilisation of financial, physical and intangible resources. The research methodology is longitudinal and draws from both positivist and interpretive traditions. lt includes an initial census of the two hundred secondary schools in four local education authorities, a final survey of the same population, and four case studies, using both interview methods and documentation. Two modes of innovation are discerned. In respect of administrative use a rationalising, controlling mode is identified, with local education authorities developing standardised computer-assisted administrative systems for use in schools. In respect of curricular use, in contrast, teachers have been able to maintain an indeterminate occupational knowledge base, derived from an ideology of professionalism in respect of the classroom use of the technology. The mode of innovation in respect of curricular use has been one of learning and enabling. The resourcing policies of central and local government agencies affect the extent of use of the technology for teaching purposes, but the way in which it is used is determined within individual schools, where staff with relevant technical expertise significantly affect the course of the innovation.

Young adults in rural tourism areas

This thesis examines how tourism affects conditions for young adults in rural areas. Such a study lies at the intersection of research about tourism impacts, adult transition, and rural areas. The aim is to examine how largescale tourism affects the opportunities for young adults living in rural areas; their perception of place and the perceived opportunities and obstacles that tourism provides. The thesis utilizes a mixed method approach. A quantitative study based on micro-data on individuals identifies the patterns and magnitudes of the mechanisms by which tourism affects population change among young adults. Interview methods are used in the case study area, Sälen, to investigate these mechanisms in depth. Finally, the rural–urban dichotomy is explored in a conceptual study that asks how tourism affects the perception of a local village as either rural or urban. Young inhabitants in rural areas are rarely considered in tourism research; therefore, the main contribution of this thesis is that it illuminates how tourism affects conditions for young adults in rural areas. The thesis reveals a substantial impact on the adult transition, mainly due to easier access to the labor market and a good supply of jobs during the high season. Further, the large number of people passing through creates flows of opportunities to make friends, get a job, or just meet people. All of these factors contribute to high mobility in these places, and to the perception of them as places where things happen. The high mobility in Sälen implies that fixed migrant categories (such as stayers and leavers) are largely insufficient. The tourism environment creates a space that is always under construction and continually producing new social relations mainly perceived as opportunities. Conceptualizing this as a modern rurality is a way to move beyond the often implicit notions of urban as modern and rural as traditional.

Interview procedures and employee testing methods.

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Development and interrater reliability testing of a telephone interview training programme for Australian nurse interviewers

Summary Background The final phase of a three phase study analysing the implementation and impact of the nurse practitioner role in Australia (the Australian Nurse Practitioner Project or AUSPRAC) was undertaken in 2009, requiring nurse telephone interviewers to gather information about health outcomes directly from patients and their treating nurse practitioners. A team of several registered nurses was recruited and trained as telephone interviewers. The aim of this paper is to report on development and evaluation of the training process for telephone interviewers. Methods The training process involved planning the content and methods to be used in the training session; delivering the session; testing skills and understanding of interviewers post-training; collecting and analysing data to determine the degree to which the training process was successful in meeting objectives and post-training follow-up. All aspects of the training process were informed by established educational principles. Results Interrater reliability between interviewers was high for well-validated sections of the survey instrument resulting in 100% agreement between interviewers. Other sections with unvalidated questions showed lower agreement (between 75% and 90%). Overall the agreement between interviewers was 92%. Each interviewer was also measured against a specifically developed master script or gold standard and for this each interviewer achieved a percentage of correct answers of 94.7% or better. This equated to a Kappa value of 0.92 or better. Conclusion The telephone interviewer training process was very effective and achieved high interrater reliability. We argue that the high reliability was due to the use of well validated instruments and the carefully planned programme based on established educational principles. There is limited published literature on how to successfully operationalise educational principles and tailor them for specific research studies; this report addresses this knowledge gap.

Factors associated with suboptimal adherence to antiretroviral therapy in Viet Nam: A cross-sectional study using audio computer-assisted self-interview (ACASI)

Background: Optimal adherence to antiretroviral therapy (ART) is necessary for people living with HIV/AIDS (PLHIV). There have been relatively few systematic analyses of factors that promote or inhibit adherence to antiretroviral therapy among PLHIV in Asia. This study assessed ART adherence and examined factors associated with suboptimal adherence in northern Viet Nam. Methods: Data from 615 PLHIV on ART in two urban and three rural outpatient clinics were collected by medical record extraction and from patient interviews using audio computer-assisted self-interview (ACASI). Results: The prevalence of suboptimal adherence was estimated to be 24.9% via a visual analogue scale (VAS) of past-month dose-missing and 29.1% using a modified Adult AIDS Clinical Trial Group scale for on-time dose-taking in the past 4 days. Factors significantly associated with the more conservative VAS score were: depression (p < 0.001), side-effect experiences (p < 0.001), heavy alcohol use (p = 0.001), chance health locus of control (p = 0.003), low perceived quality of information from care providers (p = 0.04) and low social connectedness (p = 0.03). Illicit drug use alone was not significantly associated with suboptimal adherence, but interacted with heavy alcohol use to reduce adherence (p < 0.001). Conclusions: This is the largest survey of ART adherence yet reported from Asia and the first in a developing country to use the ACASI method in this context. The evidence strongly indicates that ART services in Viet Nam should include screening and treatment for depression, linkage with alcohol and/or drug dependence treatment, and counselling to address the belief that chance or luck determines health outcomes.

The artful life story : the oral history interview as fiction

This practice-led PhD project consists of two parts. The first is an exegesis documenting how a fiction writer can enter a dialogue with the oral history project in Australia. I identify two philosophical mandates of the oral history project in Australia that have shaped my creative practice: an emphasis on the analysis of the interviewee’s subjective experience as a means of understanding the past, and the desire to engage a wide audience in order to promote empathy towards the subject. The discussion around fiction in the oral history project is in its infancy. In order to deepen the debate, I draw on the more mature discussion in ethnographic fiction. I rely on literary theorists Steven Greenblatt, Dorrit Cohn and Gerard Genette to develop a clear understanding of the distinct narrative qualities of fiction, in order to explore how fiction can re-present and explore an interviewee’s subjective experience, and engage a wide readership. I document my own methodology for producing a work of fiction that is enriched by oral history methodology and theory, and responds to the mandates of the project. I demonstrate the means by which fiction and the oral history project can enter a dialogue in the truest sense of the word: a two-way conversation that enriches and augments practice in both fields. The second part of the PhD is a novel, set in Brisbane and based on oral history interviews and archival material I gathered over the course of the project. The novel centres on Brisbane artist Evelyn, who has been given an impossible task: a derelict old house is about to be demolished, and she must capture its history in a sculpture that will be built on the site. Evelyn struggles to come up with ideas and create the sculpture, realising that she has no way to discover who inhabited the house. What follows is a series of stories, each set in a different era in Brisbane’s history, which take the reader backwards through the house’s history. Hidden Objects is a novel about the impossibility of grasping the past and the powerful pull of storytelling. The novel is an experiment in a hybrid form and is accompanied by an appendix that identifies the historically accurate sources informing the fiction. The decisions about the aesthetics of the novel were a direct result of my engagement with the mandates of the oral history project in Australia. The novel was shortlisted in the 2012 Queensland Literary Awards, unpublished manuscript category.

Feeding attitudes, practices and traditional dietary beliefs of Chinese mothers with young children in Australia : a mixed methods study

Background and Objectives Obesity and some dietary related diseases are emerging health problems among Chinese immigrants and their children in developed countries. These health problems are closely linked to eating habits, which are established in the early years of life. Young children’s eating habits are likely to persist into later childhood and youth. Family environment and parental feeding practices have a strong effect on young children’s eating habits. Little information is available on the early feeding practices of Chinese mothers in Australia. The aim of this study was to understand the dietary beliefs, feeding attitudes and practices of Chinese mothers with young children who were recent immigrants to Australia. Methods Using a sequential explanatory design, this mixed methods study consisted of two distinct phases. Phase 1 (quantitative): 254 Chinese immigrant mothers of children aged 12 to 59 months completed a cross-sectional survey. The psychometric properties and factor structure of a Chinese version of the Child Feeding Questionnaire (CFQ, by Birch et al. 2001) were assessed and used to measure specific maternal feeding attitudes and controlling feeding practices. Other questions were developed from the literature and used to explore maternal traditional dietary beliefs and feeding practices related to their beliefs, perceptions of picky eating in children and a range of socioeconomic and acculturation factors. Phase 2 (qualitative): 21 mothers took part in a follow-up telephone interview to assist in explaining and interpreting some significant findings obtained in the first phase. Results Chinese mothers held strong traditional dietary beliefs and fed their children according to these beliefs. However, children’s consumption of non-core foods was high. Both traditional Chinese and Australian style foods were consumed by their children. Confirmatory factor analysis revealed that the original 7-factor model of the CFQ provided an acceptable fit to the data with minor modification. However, an alternative model with eight constructs in which two items related to using food rewards were separated from the original restriction construct, not only provided an acceptable fit to the data, but also improved the conceptual clarity of the constructs. The latter model included 24 items loading onto the following eight constructs: restriction, pressure to eat, monitoring, use of food rewards, perceived responsibility, perception of own weight, perception of child’s weight, and concern about child becoming overweight. The internal consistency of the constructs was acceptable or desirable (Cronbach’s α = .60 - .93). Mothers reported low levels of concern about their child overeating or becoming overweight, but high levels of controlling feeding practices: restriction, monitoring, pressure to eat and use of food rewards. More than one quarter of mothers misinterpreted their child’s weight status (based on mothers’ self-reported data). In addition, mothers’ controlling feeding practices independently predicted half of the variance and explained 16% of the variance in child weight status: pressuring the child to eat was negatively associated with child weight status (β = -0.30, p < .01) and using food rewards was positively associated with child weight status (β = 0.20, p < .05) after adjusting for maternal and child covariates. Monitoring and restriction were not associated with child weight status. Mothers’ perceptions of their child’s weight were positively associated with child weight status (β = 0.33, p < .01). Moreover, mothers reported that they mostly decided what (65%) and how much (80%) food their child ate. Mothers who decided what food their child ate were more likely to monitor (β = -0.17, p < .05) and restrict (β = -0.17, p < .05) their child’s food consumption. Mothers who let their child decide how much food their child ate were less likely to pressure their child to eat (β = -0.38, p < .01) and use food rewards (β = -0.24, p < .01). Mothers’ perceptions of picky eating behaviour were positively associated with their use of pressure (β = 0.21, p < .01) and negatively associated with monitoring (β = -0.16, p < .05) and perceptions of their child’s weight status (β = -0.13, p < .05). Qualitative data showed that pressuring to eat, monitoring and restriction of the child’s food consumption were common practices among these mothers. However, mothers stated that their motivation for monitoring and restricting was to ensure the child’s general health. Mothers’ understandings of picky eating behaviour in their children were consistent with the literature and they reported multiple feeding strategies to deal with it. Conclusion Chinese immigrant mothers demonstrated strong traditional dietary beliefs, a low level of concern for child weight, misperceptions of child weight status, and a high overall level of control in child feeding in this study. The Chinese version of the CFQ, which consists of eight constructs and distinguishes between the constructs using food rewards and restriction, is an appropriate instrument to assess feeding attitudes and controlling feeding practices among Chinese immigrant mothers of young children in Australia. Mothers’ feeding attitudes and practices were associated with children’s weight status and mothers’ perceptions of picky eating behaviour in children after adjusting for a range of socio-demographic maternal and child characteristics. Monitoring and restriction of children’s food consumption according to food selection may be positive feeding practices, whereas pressuring to eat and using food rewards appeared to be negative feeding practices in this study. In addition, the results suggest that these young children have high exposure to energy-dense, nutrient-poor food. There is a need to develop and implement nutrition interventions to improve maternal feeding practices and the dietary quality among children of Chinese immigrant mothers in Australia.

Prototyping the self-authored video interview : Challenges and opportunities

Self-authored video- where participants are in control of the creation of their own footage- is a means of creating innovative design material and including all members of a family in design activities. This paper describes our adaptation to this process called Self Authored Video Interviews (SAVIs) that we created and prototyped to better understand how families engage with situated technology in the home. We find the methodology produces unique insights into family dynamics in the home, uncovering assumptions and tensions unlikely to be discovered using more conventional methods. The paper outlines a number of challenges and opportunities associated with the methodology, specifically, maximising the value of the insights gathered by appealing to children to champion the cause, and how to counter perceptions of the lingering presence of researchers.

Using Bourdieu in education research: Theory and methods

This workshop will snapshot Bourdieu's sociology. In recognition of Bourdieu's work as a powerful theoretical instrument to speculate the reproduction of social orders and cultural values, the workshop will firstly discuss the core concepts of habitus, capital, and field – the foundational triad of Bourdieu's sociology. Although Bourdieu's original work was built on some quantitative studies, his sociology has been largely qualitatively used in education research. Different from the bulk of extant research, the workshop will secondly showcase some quantitative and mixed methods research that uses a Bourdieusian framework. Mindful of such a framework helping understand social practice at a macro level, the workshop will then make an attempt to think through the macro and the micro by weaving together Bourdieu's sociology with Garfinkel's ethnomethodology. The workshop will conclude with some reflections and communications in terms of how to better realise the full value of Bourdieu in education research.

Using a prompt sheet to improve the reference interview in a health telephone helpline service

Price, T., Urquhart, C. & Cooper, J. (2007). Using a prompt sheet to improve the reference interview in a health telephone helpline service. Evidence Based Library and Information Practice, 2(3), 43-58 Open access journal

Symptom burden in individuals with inflammatory bowel disease: a mixed methods study

To investigate the symptom burden experiences of individuals with inflammatory bowel disease (IBD). An explanatory sequential mixed methods study was conducted. A cross-sectional, correlational survey was first undertaken. Symptom burden was measured using a modified disease specific version of the Memorial Symptom Assessment Scale, which was administered to a consecutive sample of individuals with IBD (n = 247) at an IBD Outpatients department in one urban teaching hospital in Ireland. Disease activity was determined using clinical disease activity indices, which were completed by the consulting physician. A sequential qualitative, descriptive study was then conducted aimed at explaining noteworthy quantitative findings. A criterion-related purposeful sample of seven participants from the quantitative study was recruited. Semi-structured face to face interviews were conducted using an interview guide and data were analysed using content analysis. Findings revealed that participants experienced a median of 10 symptoms during the last week, however as many as 16 symptoms were experienced during active disease. The most burdensome symptoms were lack of energy, bowel urgency, diarrhoea, feeling bloated, flatulence and worry. Total symptom burden was found to be low with a mean score of 0.56 identified out of a possible range from 0 to 4. Participants with active disease (M = 0.81, SD = 0.48; n = 68) had almost double mean total symptom burden scores than participants with inactive disease (M = 0.46, SD = 0.43; n = 166) (p < 0.001). Mean total psychological symptom burden was found to be significantly greater than mean total physical symptom burden (rho = 0.73, n = 247, p < 0.001). Self-reported disease control, gender, number of flare ups in the last two years, and smoking status was found to be significant predictors of total symptom burden, with self-reported disease control identified as the strongest predictor. Qualitative data revealed tiredness, pain, bowel symptoms, worry and fear as being burdensome. Furthermore, symptom burden experiences were described in terms of its impact on restricting aspects of daily activities, which accumulated into restrictions on general life events. Psychological symptom burden was revealed as more problematic than physical symptom burden due to its constant nature, with physical and psychological symptoms described to occur in a cyclical manner. Participants revealed that disease control was evaluated not only in terms of symptoms, but also in terms of their abilities to control the impact of symptoms on their lives. This study highlights the considerable number of symptoms and the most burdensome symptoms experienced by individuals with IBD, both during active and inactive disease. This study has important implications on symptom assessment in terms of the need to encompass both physical and psychological symptoms. In addition, greater attention needs to be placed on psychological aspects of IBD care.

Health coaching for glaucoma care: a pilot study using mixed methods.

INTRODUCTION: Adherence to glaucoma medications is essential for successful treatment of the disease but is complex and difficult for many of our patients. Health coaching has been used successfully in the treatment of other chronic diseases. This pilot study explores the use of health coaching for glaucoma care. METHODS: A mixed methods study design was used to assess the health coaching intervention for glaucoma patients. The health coaching intervention consisted of four to six health coaching sessions with a certified health coach via telephone. Quantitative measures included demographic and health information, adherence to glaucoma medications (using the visual analog adherence scale and medication event monitoring system), and an exit survey rating the experience. Qualitative measures included a precoaching health questionnaire, notes made by the coach during the intervention, and an exit interview with the subjects at the end of the study. RESULTS: Four glaucoma patients participated in the study; all derived benefits from the health coaching. Study subjects demonstrated increased glaucoma drop adherence in response to the coaching intervention, in both visual analog scale and medication event monitoring system. Study subjects' qualitative feedback reflected a perceived improvement in both eye and general health self-care. The subjects stated that they would recommend health coaching to friends or family members. CONCLUSION: Health coaching was helpful to the glaucoma patients in this study; it has the potential to improve glaucoma care and overall health.

Decompressive hemicraniectomy following malignant middle cerebral artery infarctions:a mixed methods exploration of carer experience and level of burden

Purpose: This study explores the experiences and sense of burden of family carers of survivors of malignant middle cerebral artery infarctions who had undergone decompressive hemicraniectomy. To date, there have been no studies examining carer outcomes among this unique population. This study, taken alongside an already published study of survivor outcomes, provides a more holistic picture with regard to sequelae within the sample. Method: Six family carers completed the Sense of Competence Questionnaire and the Hospital Anxiety and Depression Scale. These results were compared with existing normative data. Carers also consented to a semi-structured interview. Interview data were examined using thematic content analysis. Consistent with the mixed methods design, quantitative and qualitative findings were integrated for further analysis. Results: While carers experienced many losses, their overall sense of burden was not outside 'Average' limits, nor did they experience clinically significant symptoms of depression. All carers identified methods of coping with the demands of caregiving. These included intrapersonal, interpersonal and practical strategies. All carers apart from one were able to identify areas of post-traumatic growth. Conclusion: Carers will benefit from information, support and care. In addition, problem solving skills are essential in managing the myriad difficulties that arise in the aftermath of stroke. [Box: see text].