Louise D Bryant

University of Leeds · Faculty of Medicine and Health

To address five broad questions concerned with knowledge, anxiety, factors associated with participation/non-participation in screening programmes and the long-term sequelae of false-positive, true-positive in newborns and true-negative results. Five electronic databases, two journals and attempts were made to locate unpublished work. This review s...

Down's syndrome has been, and continues to be, a central focus of prenatal testing technology. However, there has been surprisingly little examination of how parental understandings of the condition relate to prenatal testing choices. This study, carried out at the University of Leeds, uses Q methodology to identify 'competing equivalent stories' o...

Objective Obstetric ultrasound scans provide real-time results. In some organisations and countries, the immediate communication of results by sonographers to patients is standard practice, but there is a lack of evidence-based training to support them with this challenging task. This pilot study evaluated a novel communication coaching interventio...

Introduction Despite widespread recognition that communicating unexpected news during obstetric ultrasound examinations is challenging, there is a dearth of research investigating how to teach evidence-based communication to sonographers. Communication Coaching is a supportive, positive method that has previously been associated with improvements i...

Background Self-harm is an important public health problem but therapeutic interventions, particularly for people who have a history of multiple repetition, are not always taken up or effective when they are. The aim of this review is to explore first-hand accounts of what helps outside therapy and identify actions and processes, which can support...

The advent of prenatal screening technologies has neatly paralleled the evolution of disability rights. During the 1970s and 1980s, the disability movement in many countries campaigned for barrier removal, better provision and recognition.

Objectives The UK National Institute for Health Research (NIHR) training programmes were created to build and sustain research capacity in healthcare. Following the training programme 10-year strategic review, this qualitative study aimed to deepen understanding of facilitators and barriers for those progressing through NIHR-supported research care...

Despite the benefits of the internet and other digital technology, the online world has been associated with a negative impact on university student wellbeing. Many university students report symptoms of pathological internet use. Internationally, further research is needed to understand what student users of technology perceive to be problematic i...

Background Multiple repetition of self-harm is common and is associated with poor quality of life and with an increased risk of suicide. Treatment outside specialist clinics rarely takes account of what is known about the varied and conflicting reasons for multiple repetition. We aimed to identify ways in which individuals who self-harm make sense...

Background Studies indicate there is a need to improve the delivery of unexpected news via obstetric ultrasound, but there have been few advances in this area. One factor preventing improvement has been a lack of consensus regarding the appropriate phrases and behaviours which sonographers and ultrasound practitioners should use in these situations...

Background: studies indicatethere is a need to improve the delivery of unexpected news via obstetric ultrasound, but there have been few advances in this area. One factor preventing improvement has been a lack of consensus regarding the appropriate phrases and behaviours which sonographers and ultrasound practitioners should use in these situations...

Background Mentoring is frequently suggested as an intervention to address gender inequalities in the workplace. Objectives To systematically review evidence published since a definitive review in 2006 on the effectiveness of mentoring interventions aimed at achieving gender equality in academic medicine. Design Systematic Review, using the Templ...

Objective To examine attitudes toward prenatal testing and termination of pregnancy (TOP) among parents and obstetric providers in relation to their views on raising a child with disability. Methods An explanatory sequential mixed methods study. A survey among 274 parents and 141 providers was followed by interviews with 26 parents and 10 provider...

Noninvasive prenatal testing (NIPT) is one of the most significant recent technological developments in prenatal testing for Down syndrome. It offers pregnant women an early, safe, highly accurate screening test for Down syndrome. To support informed choice, clinicians must be clear about the limitations of NIPT and that it may not always be the be...

Background In trials incorporating a health economic evaluation component, reliable validated measures for health-related quality of life (HRQOL) are essential. The EQ-5D is the preferred measure for cost-effectiveness analysis in UK trials. This paper presents a qualitative evaluation of the use of the EQ-5D-3L in a feasibility randomised control...

Introduction Intervening effectively to prevent students’ harmful use of alcohol remains a challenge. Harmful alcohol use has been noted as the most dominant public health problem facing universities today. This study sought to investigate the diversity in staff and student perceptions of the contribution alcohol makes to student life in a Danish u...

Survey questions for students and staff. Copy of the survey questions for students and staff in the study. (DOCX)

Appendix S1. Form used with participants to explain randomization in the RCT.

Appendix S2. Form used with participants to obtain consent for research participation

Background Although supported self-management is a well-recognised part of chronic disease management, it has not been routinely used as part of healthcare for adults with a learning disability. We developed an intervention for adults with a mild or moderate learning disability and type 2 diabetes, building on the principles of supported self-manag...

Background Obesity and type 2 diabetes are common in adults with a learning disability. It is not known if the principles of self-management can be applied in this population. Objectives To develop and evaluate a case-finding method and undertake an observational study of adults with a learning disability and type 2 diabetes, to develop a standard...

Background The challenges of conducting research with hard to reach vulnerable groups are particularly pertinent for people with learning disabilities. Data collection methods for previous cost and cost-effectiveness analyses of health and social care interventions targeting people with learning disabilities have relied on health care/health insura...

There are many challenges in the development, implementation and evaluation of healthcare policy. One challenge is understanding how different stakeholders view a particular policy and what impact these views may have during implementation. Q-methodology is one approach that can be used to help policy makers and researchers actively engage with tho...

Aims To undertake a feasibility randomized controlled trial of supported self‐management vs treatment as usual in a population of adults with obesity, Type 2 diabetes and an intellectual disability. Methods We conducted an individually randomized feasibility trial. Participants were adults aged >18 years with a mild or moderate intellectual disabi...

Background: The challenges of conducting research with hard to reach vulnerable groups are particularly pertinent for people with learning disabilities. Data collection methods for previous cost and cost effectiveness analyses of health and social care interventions targeting people with learning disabilities have relied on health care/health insur...

Figure S1 Overview of interview schedule.

Figure S2 Overview of research project.

Background: People with learning disabilities (LD) have poor physical and mental health when compared with the general population. They are also likely to find it more difficult than others to describe their symptoms adequately. It is therefore harder for healthcare workers to identify the health needs of those with learning disabilities, with the...

Aims: To report the results of a case-finding study conducted during a feasibility trial of a supported self-management intervention for adults with mild to moderate intellectual disability and Type 2 diabetes mellitus, and to characterize the study sample in terms of diabetes control, health, and access to diabetes management services and support...

The rapid introduction of non‐invasive prenatal testing for Down syndrome into clinical practice has reignited the ethical debate around testing technologies and their potential impact on individuals and society. The debate is centred on the benefits of the new technology in terms of enhancing autonomous choice versus the rights of people with Down...

Objectives The number of women entering medicine has increased significantly, yet women are still under-represented at senior levels in academic medicine. To support the gender equality action plan at one School of Medicine, this study sought to (1) identify the range of viewpoints held by staff on how to address gender inequality and (2) identify...

Introduction: This qualitative study was conducted to explore the motivations and experience of oocyte donors donating to women known to them. Methods: Three women who donated oocytes to a close relative were interviewed and data were analysed using an Interpretative Phenomenological Analysis approach. Results: The two key elements noted were ?moti...

Background Reporting adherence to intervention delivery and uptake is a detailed way of describing what was actually delivered and received, in comparison to what was intended. Measuring and reporting adherence is not routinely done well in complex interventions. The OK Diabetes trial (ISRCTN41897033) aimed to develop and subsequently test the feas...

Midwives do not routinely receive training in how to manage parent care when Down syndrome (DS) is identified in pregnancy or after birth. Many parents report dissatisfaction with the response of health professionals during this time. In response to this, the UK Down's Syndrome Association has developed the Tell it Right, Start it Right training. T...

Implementing clinical trials involving participants with diminished capacity, such as elderly residents in care homes, stroke survivors, those with a learning disability, can be challenging in terms of balancing complex service and patient needs with methodological rigor. The key challenges identified here are the appropriate tailoring of recruitme...

Background: Individuals with a learning disability (LD) are at higher risk of developing type 2 diabetes, but LD is not straightforward to define or identify, especially at the milder end of the spectrum, which makes case finding difficult. While supported self-management of health problems is now established, current material is largely education...

Background: The offer of prenatal Down's syndrome screening is part of routine antenatal care in most of Europe; however screening uptake varies significantly across countries. Although a decision to accept or reject screening is a personal choice, it is unlikely that the widely differing uptake rates across countries can be explained by variation...

The UK Department of Health introduced the National Health Service (NHS) Health Check Programme in April 2009 in an attempt to improve primary and secondary prevention of cardiovascular disease in the UK population and to reduce health inequalities. Healthcare professionals' attitudes towards giving lifestyle advice will influence how they interact...

Cystic fibrosis (CF) is one of the most common life-threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what information to deli...

Background: Cystic fibrosis (CF) is one of the most common life threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what informat...

INTRODUCTION: There is a growing consensus that decisions about prenatal testing should a) be informed, and b) reflect the individual's attitudes and values. Most research has focused on information and attitudes in relation to the tests but there has been little attention given to these factors in relation to the target condition. AIMS: This...

It has been argued that Down syndrome (DS) is as much a cultural creation as a biomedical condition, yet the majority of research in this area has been conducted in 'Western' cultures. This study explored parents' experiences of their child with DS in Pakistan and their views on abortion for the condition. Thirty mothers and fathers of children wit...

Background: Patient autonomy in antenatal screening is a high priority for policy developers in many countries. Objective: This paper presents women's understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice. Design, setting and participants: The stu...

This study aimed to investigate the relationship between attitudinal ambivalence towards Down’s syndrome (DS) and prenatal testing and termination intentions. Intentions towards using a screening test, a diagnostic test and termination of pregnancy for DS were collected from 140 pregnant women along with their attitudes and attitudinal ambivalence...

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professi...

Research considering the role of attitudes in prenatal testing choices has commonly focused on the relationship between the attitude towards undergoing testing and actual testing behaviour. In contrast, this study focused on the relationship between testing behaviour and attitudes towards the targets of the behaviour (in this case people with Down...

Introduction: consent, choices and decisions. The concept of informed consent is central to the delivery of ethical healthcare services. Informed consent starts from the assumption that, following the provision of appropriate information, and based on his or her expertise, a clinician recommends a course of action to which the individual is asked t...

The Antenatal Screening Web Resource (AnSWeR) was designed to support informed prenatal testing choices by providing balanced information about disability, based on the testimonies of disabled people and their families. We were commissioned by the developers to independently evaluate the website. This paper focused on how participants evaluated AnS...

As primary care practitioners are the health professionals closest to patients' everyday lives, they are most likely to experience the impact of policies that support the patient choice agenda. The government's approach to increasing patient choice has been subject to criticism by those sceptical of its politics and by those concerned with its infl...

Background This project was commissioned by the Leeds Primary Care Trust Modernisation Team to complement an audit of psychological therapy services in Leeds carried out in 2006. Purpose of the project The objectives of the project were to capture a wide range of service user views and experiences in relation to four main topics: • pathways and ac...

Background Self-harm is the term used to describe the action of a person who deliberately and physically harms themselves. There are many ways in which people harm themselves, but the most common ways are taking overdoses of tablets or medicines (self-poisoning), and cutting or burning themselves (self-injury). Self-harm is associated with serious...

AIMS AND METHOD We aimed to introduce mental health service users, carers and workers to working as research partners with an academic unit, and provide training to facilitate participation. We achieved this by running workshops covering different stages of the research process. RESULTS Service users, carers and workers attended the workshops, alth...

This study surveyed the views of 78 women who had a sibling with Down's syndrome towards using prenatal diagnosis and termination. Other data were collected, including participants' perceptions of the difficulty of caring for a child with Down's syndrome, perceived familial approval of selective termination, and the quality of the sibling relations...

It is recommended practice that prior to prenatal screening, women receive information about the condition(s) being tested for. The present study critically evaluated information about Down syndrome as contained in 80 leaflets provided to pregnant women in the UK prior to serum screening. First, a content analysis by information type was conducted...

The National Screening Committee of the Department of Health has made recommendations to the Government advising that prenatal screening for Down's syndrome should be offered to all pregnant women regardless of their age. As most women over 35 are already offered some form of testing, affected pregnancies in younger women will account for the major...

The National Screening Committee of the Department of Health has made recommendations to the Government advising that prenatal screening for Down's syndrome should be offered to all pregnant women regardless of their age. As most women over 35 are already offered some form of testing, affected pregnancies in younger women will account for the major...

The National Screening Committee of the Department of Health has made recommendations to the Government advising that prenatal screening for Down's syndrome should be offered to all pregnant women regardless of their age. As most women over 35 are already offered some form of testing, affected pregnancies in younger women will account for the major...