Reconceiving the Spoiled Female Identity: Childbearing and Motherhood among Women with Hepatitis C

This thesis explores the impact of hepatitis C on women’s childbearing decisions and experiences of motherhood. A partial grounded theory approach was used, in which 34 women living with hepatitis C participated in semi-structured interviews to determine the direct and indirect effects of hepatitis C on their own personal decisions regarding childbearing and to describe their lived experiences of motherhood. The qualitative interview data were analysed thematically, in which common themes were identified and explored. ¶ Three key areas are explored: women’s social experience of hepatitis C; hepatitis C and childbearing decisions; and the meaning of motherhood for women with hepatitis C. ¶ ..

Injecting Drug Users' Understanding of Hepatitis C

Most Australians who have hepatitis C contracted the virus through the shared use of drug injecting equipment. Further, the prevalence and incidence of hepatitis C virus (HCV) are high among Australian injecting drug users (IDUs), around 50 to 60 percent and 15 percent respectively. The task, therefore, of controlling the spread of hepatitis C depends largely on controlling transmission among IDUs. Although there is a considerable body of research describing hepatitis C epidemiology and infection risk factors, very little research has examined IDUs’ understanding of hepatitis C. The aim of the current study, therefore, was to examine IDUs’ knowledge of hepatitis C, their understanding of virus transmission, the clinical markers and symptoms of the virus, and treatment in particular. How IDUs prioritise hepatitis C relative to other life areas was also examined. A cross-sectional survey, using an interviewer administered, structured questionnaire, was conducted across inner-city, suburban and regional sites of New South Wales. Participants were recruited through advertisements at needle and syringe programs (NSPs), methadone clinics, and snowballing (word-of-mouth) techniques. Participation was not determined by hepatitis C status. One hundred and forty nine IDUs were interviewed. The median age of the sample was 34 years and approximately two-thirds were male. The median age of first drug injection was 17 years, with the most commonly reported illicit drugs injected in the last month being amphetamine (62%) and heroin (61%). Over half of the sample (62%) was in treatment for drug use at the time of interview, with the majority in a methadone or buprenorphine program. Over half the sample rated their knowledge and understanding of hepatitis C as either ‘good’ (30%) or ‘very good’ (23%). Testing for hepatitis C was common among the sample, with all but one participant tested for hepatitis C in their lifetime, and the majority (74%) tested one or more times in the past 12 months. ‘Routine screening’ was the main reason selected for their last test (39%), followed by ‘mandatory testing’ (13%) and then ‘risky behaviour’ (12%). Seventy six percent of the sample believed they had hepatitis C at the time of interview. Despite most participants reporting recent and often multiple testing, a number of IDUs were clearly confused about the results of the various tests. Only about 40 percent of those tested during or after 2000 reported receiving pre- and post-test counselling. Significant gaps in IDUs’ knowledge of hepatitis C were uncovered in the study, with respect to transmission risks, symptoms, clinical markers and treatment. For instance, substantial proportions of participants believed it was possible to contract hepatitis C by re-using their own needle (48%), or from dirt (17%). Forty-two percent of participants believed antibodies to hepatitis C gave protection against acquiring the virus (42%), and over one-third (35%) believed that some people are immune to hepatitis C. IDUs’ understanding of their own hepatitis C infection was similarly confused, with one in five participants who reported having hepatitis C believing they could not infect others (19%), and that they were immune to hepatitis C (19%). One in three participants stated they did not have antibodies for hepatitis C, and an even greater number were unsure, despite reporting themselves to have hepatitis C. Very few IDUs were found to prioritise hepatitis C highly relative to other life areas. For many IDUs, hepatitis C appears to be a relatively low priority compared with the numerous health, welfare and social concerns that exist among this often economically and socially marginalised group. However, health was frequently selected as one of the most important life areas determining quality of life, which may incorporate symptoms and sequelae resulting from hepatitis C impacting on day-to-day life. Given the high prevalence and incidence of hepatitis C among Australian IDUs, and that many continue to share injecting equipment, the findings of this study are of great concern. The fundamental misconceptions held about hepatitis C, particularly regarding ‘antibodies’ and their perceived role in providing immunity, place IDUs at serious risk of transmitting and contracting hepatitis C. These findings warrant further development of, and research into, strategies to improve IDUs’ understanding of hepatitis C

Can stroke survivors use e-bikes as a form of outdoor physical activity?

This research is adapted from Exploring the factors influencing the use of electrically assisted bikes (e-bikes) by stroke survivors: a mixed methods multiple case study published by Taylor & Francis in Disability and Rehabilitatio

Delivering intensive rehabilitation in stroke: factors influencing implementation

Background The evidence-base for stroke rehabilitation recommends intensive and repetitive task-specific practice, as well as aerobic exercise. However, translating these evidence-based interventions from research into clinical practice remains a major challenge. Objective To investigate factors influencing implementation of higher intensity activity in stroke rehabilitation settings Design A cross-sectional qualitative study. Methods Semi-structured interviews with rehabilitation therapists who had experience of delivering a higher intensity intervention as part of a clinical trial (DOSE), from four sites, across two provinces, in Canada. An interview guide was developed and data analysed using implementation frameworks. Results Fifteen therapists were interviewed before data saturation was reached. Therapists and patients generally had positive experiences regarding high intensity interventions. However, therapists felt they would adapt the protocol to accommodate their beliefs about ensuring movement quality. The requirement for all patients to have a graded exercise test, and the use of sensors, e.g. heart rate monitors, gave therapists confidence to push patients harder than they normally would. Paradoxically, a system that enables routine graded exercise testing, and the availability of staff and equipment contribute challenges for implementation in everyday practice. Conclusions Even therapists involved in delivering a high intensity intervention as part of a trial wanted to adapt it for clinical practice. Hence it is imperative that researchers are explicit regarding key intervention components and what can be adapted to help ensure implementation fidelity. Changes in therapist’s beliefs and system level changes (staffing and resources) are likely to be required to facilitate higher intensity rehabilitation in practice

An exploration of stakeholder perceptions to inform the development of an evidence-based classification system in para dressage.

In dressage, horse-rider combinations must demonstrate harmony whilst performing a test of gaits and movements, scored by judge(s) using predetermined criteria. The para dressage governing body is working towards compliance with the International Paralympic Committee’s mandate for evidence-based classification, which requires a comprehensive understanding of key performance determinants. This study aimed to explore stakeholder perceptions surrounding the key determinants of, and impact of impairment on, para dressage sports performance. Semi-structured interviews with 30 para dressage stakeholders (athletes, classifiers, judges, coach) were analysed using the Framework method. Themes relating to the equine and human athlete were associated with overall dressage performance and discussed within the context of impairment and horse-rider partnership. Key performance determinants were summarised as the athlete’s ability to maintain dynamic postural control for absorbing the horse’s movement and coordinating leg, hand, and seat aids, which directly influence the horse’s quality and accuracy of movements during dressage. Thus, muscular coordination, joint mobility that influences rider posture, and personality traits that influence the horse-rider partnership were considered performance determinants. These themes will inform the development of an evidence-based classification system, through the establishment of standardised, sport-specific performance measures for assessing the relationship between impairment and activity limitation in para dressage

Returning to leisure activity post-stroke: barriers and facilitators to engagement

Objectives: To identify barriers and facilitators to engagement when returning to, or participating in, leisure activity post-stroke or TIA. Design: Sequential explanatory, mixed methods study Setting: 21 hospital sites across England, Wales and Northern Ireland Participants: Adults with a clinical diagnosis of first/recurrent stroke or TIA. Patients approaching end of life were excluded. Participants were recruited as in-patients or at first clinic appointment and a baseline questionnaire was completed. A 6-month follow-up questionnaire was sent to participants for self-completion. Open-text questions were asked about barriers and facilitators when returning to, or participating in, leisure activity. Responses were thematically analysed and explored by participant characteristics, including type of leisure activity undertaken. Characteristics also included measures of socioeconomic deprivation, mood, fatigue and disability. Results: 2000 participants returned a 6-month follow-up questionnaire (78% stroke, 22% TIA); 1045 participants responded to a question on barriers and 820 on facilitators. Twelve themes were identified and the proportion of responses were reported (%). Barriers: physical difficulties (69%), lower energy levels (17%), loss of independence (11%), psychological difficulties (10%), hidden disabilities (7%), and delay or lack of healthcare provision (3%). Facilitators: family support (35%), healthcare support (27%), well-being and fitness (22%), friendship support (20%), self-management (19%), and returning to normality (9%). ‘Physical difficulties’ was the most reported barrier across all participant characteristics and activity types. Family support was the most reported facilitator except for those with greater disability, where it was healthcare support and those without fatigue where it was well-being and exercise. Conclusions: Physical difficulties and lack of energy are problematic for stroke and TIA survivors who want to return to or participate in leisure activity. Healthcare support alone cannot overcome all practical and emotional issues related to leisure activity engagement. Family support and improving well-being are important facilitators and future research should explore these mechanisms further

A scoping review of determinants of performance in dressage

As a first step in achieving an evidence-based classification system for the sport of Para Dressage, there is a clear need to define elite dressage performance. Previous studies have attempted to quantify performance with able-bodied riders using scientific methods; however, definitive measures have yet to be established for the horse and/or the rider. This may be, in part, due to the variety of movements and gaits that are found within a dressage test and also due to the complexity of the horse-rider partnership. The aim of this review is therefore to identify objective measurements of horse performance in dressage and the functional abilities of the rider that may influence them to achieve higher scores. Five databases (SportDiscuss, CINAHL, MEDLINE, EMBASE, VetMed) were systematically searched from 1980 to May 2018. Studies were included if they fulfilled the following criteria: (1) English language; (2) employ objective, quantitative outcome measures for describing equine and human performance in dressage; (3) describe objective measures of superior horse performance using between-subject comparisons and/or relating outcome measures to competitive scoring methods; (4) describe demands of dressage using objective physiological and/or biomechanical measures from human athletes and/or how these demands are translated into superior performance. In total, 773 articles were identified. Title and abstract screening resulted in 155 articles that met the eligibility criteria, 97 were excluded during the full screening of articles, leaving 58 included articles (14 horse, 44 rider) involving 311 equine and 584 able-bodied human participants. Mean ± sd (%) quality scores were 63.5 ± 15.3 and 72.7 ± 14.7 for the equine and human articles respectively. Significant objective measures of horse performance (n = 12 articles) were grouped into themes and separated by gait/movement. A range of temporal variables that indicated superior performance were found in all gaits/movements. For the rider, n = 5 articles reported variables that identified significant differences in skill level, which included the postural position and ROM of the rider’s pelvis, trunk, knee and head. The timing of rider pelvic and trunk motion in relation to the movement of the horse emerged as an important indicator of rider influence. As temporal variables in the horse are consistently linked to superior performance it could be surmised that better overall dressage performance requires minimal disruption from the rider whilst the horse maintains a specific gait/movement. Achieving the gait/movement in the first place depends upon the intrinsic characteristics of the horse, the level of training achieved and the ability of the rider to apply the correct aid. The information from this model will be used to develop an empirical study to test the relative strength of association between impairment and performance in able-bodied and Para Dressage riders

Life and Leisure Activities following Stroke or Transient Ischaemic Attack (TIA): An Observational, Multi-Centre, 6-Month Follow-Up Study

Objective: To examine changes in leisure participation following stroke/transient ischaemic attack (TIA) and explore its relationship to modifiable and non-modifiable participant characteristics. Design: An observational study design with self-report questionnaires collected at two time points (baseline and 6-months). Setting: The study was conducted across 21 hospital sites in England, Wales, and Northern Ireland. Participants: Participants were aged 18+ and had experienced a first or recurrent stroke or TIA and had a post-stroke/TIA modified Rankin score (mRS) of ≤3. Procedure: Research practitioners at each site approached potential participants. Individuals who agreed to participate completed a baseline questionnaire whilst an inpatient or at a first post-stroke/TIA clinic appointment. A follow-up questionnaire was posted to participants with a freepost return envelope. Two questionnaires were developed that collected demographic information, pre-stroke/TIA mRS, social circumstances (e.g., employment situation) and incorporated the shortened Nottingham Leisure Questionnaire (sNLQ). Results: The study recruited eligible participants (N = 3295); 2000 participants returned questionnaires at follow-up. Data showed three participant variables were significant predictors of engagement in leisure activities post-stroke/TIA: age, sex, and deprivation decile. There was an overall decline in the number and variety of leisure activities, with an average loss of 2.2 activities following stroke/TIA. Only one activity, “exercise/fitness” saw an increase in engagement from baseline to follow-up; watching TV remained stable, whilst participation in all other activities reduced between 10% and 40% with an average activity engagement reduction of 22%. Conclusions: Some groups experienced a greater reduction in activities than others—notably older participants, female participants, and those living in a low socioeconomic area. Registration: researchregistry4607. Strengths and limitations of this study: 1. This is the largest-ever study to survey life and leisure activity engagement following stroke/TIA. 2. Survey responses were self-reported retrospectively and, therefore, may have been misreported, or misremembered. 3. Despite the large cohort, there were few participants, and so respondents, from ethnic minority groups

Habilitation provision for children and young people with vision impairment in the United Kingdom: A lack of clarity leading to inconsistencies

The key to empowering and supporting children and young people (CYP) with vision impairment (VI) to achieve their potential lies in the delivery of habilitation training. Evidence has revealed that provision of habilitation services across the United Kingdom was inconsistent, with CYP with VI not receiving services in some areas. This research explored the accessibility and quality of habilitation provision for CYP with VI via two studies: (1) 12 qualitative case studies of habilitation practice and (2) surveys of habilitation training experiences, with CYP with VI (n = 43) and with parents of CYP with VI (n = 68). Five themes were identified highlighting inconsistencies and variability in the delivery of habilitation training in recent years, a lack of focus on independent living skills training, on social inclusion and emotional well-being, a lack of support for parents and a lack of clarity with regard to the definition of habilitation, and who is responsible for providing training

Safety and cost-effectiveness of individualised screening for diabetic retinopathy: the ISDR open-label, equivalence RCT

Aims/hypothesis Using variable diabetic retinopathy screening intervals, informed by personal risk levels, offers improved engagement of people with diabetes and reallocation of resources to high-risk groups, while addressing the increasing prevalence of diabetes. However, safety data on extending screening intervals are minimal. The aim of this study was to evaluate the safety and cost-effectiveness of individualised, variable-interval, risk-based population screening compared with usual care, with wide ranging input from individuals with diabetes. Methods This was a two-arm, parallel-assignment, equivalence RCT (minimum 2 year follow-up) in individuals with diabetes aged 12 years or older registered with a single English screening programme. Participants were randomly allocated 1:1 at baseline to individualised screening at 6, 12 or 24 months for those at high, medium and low risk, respectively, as determined at each screening episode by a risk-calculation engine using local demographic, screening and clinical data, or to annual screening (control group). Screening staff and investigators were observer-masked to allocation and interval. Data were collected within the screening programme. The primary outcome was attendance (safety). A secondary safety outcome was the development of sight-threatening diabetic retinopathy. Cost-effectiveness was evaluated within a 2 year time horizon from National Health Service and societal perspectives. Results A total of 4534 participants were randomised. After withdrawals, there were 2097 participants in the individualised screening arm and 2224 in the control arm. Attendance rates at first follow-up were equivalent between the two arms (individualised screening 83.6%; control arm 84.7%; difference −1.0 [95% CI −3.2, 1.2]), while sight-threatening diabetic retinopathy detection rates were non inferior in the individualised screening arm (individualised screening 1.4%, control arm 1.7%; difference −0.3 [95% CI −1.1, 0.5]). Sensitivity analyses confirmed these findings. No important adverse events were observed. Mean differences in complete case quality adjusted life-years (EuroQol Five-Dimension Questionnaire, Health Utilities Index Mark 3) did not significantly differ from zero