The most problematic symptoms of prion disease – an analysis of carer experiences

Liz Ford; Peter Rudge; Kathy Robinson; John Collinge; Michele Gorham; Simon Mead

doi:10.1017/s1041610218001588

The most problematic symptoms of prion disease – an analysis of carer experiences

International Psychogeriatrics ◽

10.1017/s1041610218001588 ◽

2018 ◽

Vol 31 (08) ◽

pp. 1181-1190

Author(s):

Liz Ford ◽

Peter Rudge ◽

Kathy Robinson ◽

John Collinge ◽

Michele Gorham ◽

...

Keyword(s):

Outcome Measures ◽

Prion Disease ◽

Prion Diseases ◽

Formal Analysis ◽

Structured Interview ◽

Disease Stage ◽

Structured Interviews ◽

Wide Range ◽

The Uk ◽

And Behavior

ABSTRACTObjectives:Prion diseases are rare dementias that most commonly occur sporadically, but can be inherited or acquired, and for which there is no cure. We sought to understand which prion disease symptoms are most problematic for carers, to inform the development of outcome measures.Design:Self-completed questionnaire with follow-up of a subset of participants by structured interview.Setting:A nested study in the UK National Prion Monitoring Cohort, a longitudinal observational study.Participants and measurements:71 carers, of people with different prion diseases with a wide range of disease severity, identified 236 of their four most problematic symptoms by questionnaire which were grouped into ten domains. Structured interviews were then done to qualitatively explore these experiences. Eleven family carers of people with prion disease were selected, including those representative of a range of demographics and disease subtypes and those who cared for people with prion disease, living or recently deceased. Interviews were transcribed and formally studied.Results:The six most problematic symptom domains were: mobility and coordination; mood and behavior; personal care and continence; eating and swallowing; communication; and cognition and memory. The prevalence of these symptoms varied significantly by disease stage and type. A formal analysis of structured interviews to explore these domains is reported.Conclusions:We make suggestions about how healthcare professionals can focus their support for people with prion disease. Clinical trials that aim to generate evidence regarding therapies that might confer meaningful benefits to carers should consider including outcome measures that monitor the symptomatic domains we have identified as problematic.

PREVENT Policing in Practice—The Need for Evidenced-Based Research

Policing A Journal of Policy and Practice ◽

10.1093/police/paz049 ◽

2019 ◽

Author(s):

Paul Dresser

Keyword(s):

Evidence Based ◽

Structured Interviews ◽

Counter Terrorism ◽

The Third ◽

Wide Range ◽

And Performance ◽

Evidenced Based ◽

The Uk

Abstract This article examines the PREVENT agenda, part of the UK government’s counter-terrorism strategy, CONTEST. Informed by semi-structured interviews conducted with a Special Branch PREVENT team, as well as individuals drawn from various security disciplines, this article highlights several practical barriers to realizing collaborative counter-radicalization. This is important given the third objective of PREVENT: to work with a wide range of institutions where there are risks of radicalization. This article departs from analyses that have examined PREVENT in the context of suspect profiling; rather, the focus is on illuminating the implementation, (re)configuration and performance of PREVENT policing. The article concludes by advocating the necessity for evidence-based research—this proffers pragmatic implications for the governance of counter-terrorism.

Autoeroticism, mental health, and organic disturbances in patients with erectile dysfunction

European Psychiatry ◽

10.1016/s0924-9338(11)73245-x ◽

2011 ◽

Vol 26 (S2) ◽

pp. 1541-1541

Author(s):

E. Bandini ◽

V. Ricca ◽

G. Corona ◽

A.D. Fisher ◽

V. Boddi ◽

...

Keyword(s):

Sexual Behavior ◽

Erectile Dysfunction ◽

Structured Interview ◽

Consecutive Series ◽

Structured Interviews ◽

Psychological Disturbances ◽

Middlesex Hospital ◽

Male Patients ◽

And Behavior ◽

Attitudes And Behavior

IntroductionMasturbation is a common, but often neglected, male sexual behavior. Objectives and aims: To investigate the psychobiological correlates of self-reported masturbation in the last 3 months.MethodsA consecutive series of 2,786 heterosexual male patients consulting an outpatient clinic for erectile dysfunction (ED) was studied. Several hormonal, biochemical and instrumental parameters were investigated. Patients were interviewed, prior to the beginning of any treatment, with Structured Interview on Erectile Dysfunction (SIEDY) and ANDROTEST structured interviews. They also completed the Middlesex Hospital Questionnaire.ResultsAmong the patients studied, 1,781 (61.9%) reported they had masturbated at least once per month in the preceding 3 months. The frequency of masturbation was inversely related to age (r = -0.329; P < 0.0001) and directly associated with education level (adj r = 0.052, P < 0.05 after adjustment for age). A feeling of guilt during masturbation was reported by 274 (15.4%) patients. After adjusting for age, masturbation was positively associated with testosterone levels, stressful conditions, and both unstable and long-lasting couple relationship. Urogenital problems also increased the chance of masturbation. Reported guiltiness during autoeroticism was associated with psychological disturbances, low prolactin, low testosterone, and increased relational problems.ConclusionsThis study indicates that masturbation is a relatively frequent behavior in male subjects with ED. Inquiring about this sexual behavior is an important issue for understanding overall patients’ sexual attitudes and behavior.

VALUE study: a protocol for a qualitative semi-structured interview study of IVF add-ons use by patients, clinicians and embryologists in the UK and Australia

BMJ Open ◽

10.1136/bmjopen-2020-047307 ◽

2021 ◽

Vol 11 (5) ◽

pp. e047307

Author(s):

Sarah C Armstrong ◽

Sarah Lensen ◽

Emily Vaughan ◽

Elaine Wainwright ◽

Michelle Peate ◽

...

Keyword(s):

Online Survey ◽

Randomised Trial ◽

Structured Interview ◽

In Vitro Fertilisation ◽

Snowball Sampling ◽

Traffic Light ◽

Structured Interviews ◽

The Uk ◽

Media Channels

IntroductionFor couples undergoing assisted reproduction, a plethora of adjuncts are available; these are known as ‘add-ons’. Most add-ons are not supported by good quality randomised trial evidence of efficacy, with some proven to be ineffective. However, estimates suggest that over 70% of fertility clinics provide at least one add-on, often at extra cost to the patient. This study has three aims. First, to undertake a survey of in vitro fertilisation (IVF) clinics in the UK to ascertain which add-ons are being offered and at what cost. Second, to undertake qualitative semi-structured interviews of patients, clinicians and embryologists, to explore their opinions and beliefs surrounding add-ons. Third, to review the interpretation of the Human Fertilisation and Embryology Authority traffic light system, to better understand the information required by IVF patients, clinicians and embryologists when making decisions about add-ons.Methods and analysisAll UK IVF clinics will be contacted by email and invited to complete an online survey. The survey will ask them which add-ons they offer, at what cost per cycle and how information is shared with patients. Semi-structured interviews will be conducted in the UK and Australia with three groups of participants: (i) fertility patients; (ii) clinicians and (iii) embryologists. Participants for the interviews will be recruited via social media channels, website adverts, email and snowball sampling. Up to 20 participants will be recruited for each group in each country. Following an online consent process, interviews will be conducted via video-conferencing software, transcribed verbatim and data subjected to inductive thematic analysis.Ethics and disseminationEthical approval has been granted by the Universities of Sheffield, Bath Spa and Melbourne. Findings will be published in a peer-reviewed journal and disseminated to regulatory bodies in the UK and Australia. A lay summary of findings will be shared via Fertility Network, UK.

Variant CJD: Reflections a Quarter of a Century on

Pathogens ◽

10.3390/pathogens10111413 ◽

2021 ◽

Vol 10 (11) ◽

pp. 1413

Author(s):

Diane L Ritchie ◽

Alexander H Peden ◽

Marcelo A Barria

Keyword(s):

Prion Disease ◽

Prion Diseases ◽

Large Body ◽

Dietary Exposure ◽

Spongiform Encephalopathy ◽

Biochemical Phenotype ◽

Jakob Disease ◽

Asymptomatic Individuals ◽

The Uk ◽

The Impact

Twenty-five years has now passed since variant Creutzfeldt-Jakob disease (vCJD) was first described in the United Kingdom (UK). Early epidemiological, neuropathological and biochemical investigations suggested that vCJD represented a new zoonotic form of human prion disease resulting from dietary exposure to the bovine spongiform encephalopathy (BSE) agent. This hypothesis has since been confirmed though a large body of experimental evidence, predominantly using animal models of the disease. Today, the clinical, pathological and biochemical phenotype of vCJD is well characterized and demonstrates a unique and remarkably consistent pattern between individual cases when compared to other human prion diseases. While the numbers of vCJD cases remain reassuringly low, with 178 primary vCJD cases reported in the UK and a further 54 reported worldwide, concerns remain over the possible appearance of new vCJD cases in other genetic cohorts and the numbers of asymptomatic individuals in the population harboring vCJD infectivity. This review will provide a historical perspective on vCJD, examining the origins of this acquired prion disease and its association with BSE. We will investigate the epidemiology of the disease along with the unique clinicopathological and biochemical phenotype associated with vCJD cases. Additionally, this review will examine the impact vCJD has had on public health in the UK and the ongoing concerns raised by this rare group of disorders.

Rationales for integrated reporting adoption and factors impacting on the extent of adoption

Sustainability Accounting Management and Policy Journal ◽

10.1108/sampj-02-2019-0042 ◽

2019 ◽

Vol 11 (2) ◽

pp. 351-382 ◽

Cited By ~ 1

Author(s):

Fiona Ann Robertson ◽

Martin Samy

Keyword(s):

Diffusion Of Innovation ◽

Well Being ◽

Small Sample ◽

Relative Advantage ◽

Early Adopter ◽

Structured Interviews ◽

Integrated Reporting ◽

Content Type ◽

Wide Range ◽

The Uk

Purpose The purpose of this paper is to investigate rationales for integrated reporting (<IR>) adoption and factors that impact on the extent of adoption in the UK early adopter organisations. Diffusion of innovation theory was used as a guiding theoretical lens Design/methodology/approach The study was based on in-depth semi-structured interviews with 36 senior executives actively involved in IR in finance, sustainability, communications and legal functions within seventeen organisations. A content analysis of the interviews was undertaken using qualitative coding techniques within Nvivo 11 software. Findings Organisations drew on a wide range of rationales for adoption, with a predominance of sociological over economic rationales, both of which offered organisations a relative advantage over existing practices. Economically, <IR> emerged as an incremental process, which filled a performance gap is predominantly manufacturing and utility industries with significant impacts on the environment/society. Predominant sociological rationales were: external pressures, primarily due to perceptions of shifts in societal expectations; and internal aspirations relating to enhancing reputation. Findings also revealed that the <IR> framework was not fully adopted by the majority of organisations, primarily due to incompatibility with organisational requirements and/or perceived complexity of the framework. Research limitations/implications This research study was limited by the small sample of organisations that participated, although significant efforts were made to ensure that the sample incorporated the majority of early adopter UK organisations who demonstrated best practice in <IR>. Practical implications Recommendations on how the adoption of <IR> may be further enhanced in the future are outlined. Social implications Research that provides recommendations to inform policy and practice regarding how <IR> could be more widely adopted, and its practices further diffused, within organisations is important given <IR> has the potential to contribute to societal and environmental well-being. Originality/value This study is significant as research into <IR> adoption decision motivations and subsequent extent of adoption is scant, particularly in the UK. It responds to the call by Dumay et al. (2016) for <IR> researchers to engage more with practice. It further enriches prior research on the adoption of management innovations where an extensive body of innovation literature has focussed on the rationale for organisational adoption of management innovations but has neglected the subsequent extent of adoption.

Maximising the relevance of randomised trials to primary care: a qualitative study.

10.21203/rs.2.466/v1 ◽

2019 ◽

Author(s):

Gordon John Forbes ◽

Kirsty Loudon ◽

Megan Clinch ◽

Stephanie JC Taylor ◽

Shaun Treweek ◽

...

Keyword(s):

Primary Care ◽

Trial Design ◽

Design Tool ◽

Care Practice ◽

Randomised Trials ◽

Pragmatic Approach ◽

Structured Interviews ◽

Wide Range ◽

Framework Approach ◽

The Uk

Abstract Background Pragmatic trials have been suggested as a way to improve the relevance of clinical trial results to practice. PRECIS-2 is a trial design tool which considers how pragmatic a trial is across a number of domains. It is not known whether a pragmatic approach to all PRECIS-2 domains leads to results being more relevant to primary care. The aim of this study was to investigate the views of people with influence on primary care practice towards the design of randomised trials, pragmatic approaches to trial design, and the PRECIS-2 domains. Methods We carried out semi-structured interviews with people who influence practice in primary care in the UK. A thematic analysis was undertaken using the framework approach. Results We conducted individual or small group interviews involving 17 individuals in total. We found a wide range of views. These highlighted that an exclusively pragmatic approach may not always make the results of trials more applicable to primary care. For example, it may be better to have less flexibility in the way interventions are delivered in randomised trials than in practice. In addition, an appropriate balance needs to be struck when thinking about levels of resourcing and the intensity of steps needed to improve adherence in a trial. Across other aspects of a trial’s design, for example the population and trial setting, a pragmatic approach was viewed as more appropriate. Conclusions To maximize the relevance of research directed at primary care, trials should be conducted with the same populations and settings that are found in primary care. Across other aspects of trials it is not always necessary to match the conditions found in practice.

The UK Workforce: Changes to Home Working During the Pandemic & What this Means for the Future.

10.31124/advance.14113262.v1 ◽

2021 ◽

Author(s):

Gemma Johns ◽

Sashin Ahuja ◽

Sara Khalil ◽

Mike Ogonovsky ◽

Alka Ahuja

Keyword(s):

Structured Interviews ◽

Dominant Theme ◽

Working From Home ◽

Wide Range ◽

The Future ◽

Using Data ◽

The Uk

Using data from a larger study, a theme on ‘homeworking’ emerged. Data from 437 semi-structured interviews with NHS professionals across a wide range of specialities identified a dominant theme of ‘homeworking’. Using this themed data, a short preliminary article has been produced with an infographic guide that is developed as a generic guide, not just for NHS staff. There are considerable benefits relating to the current changes in working patterns, with now many working from home, however there are also challenges and risks associated to these changes, which require further exploration to ensure that the UK workforce is best utilised, yet protected. This article provides an overview of this data, and a helpful hints and tips infographic. A larger, UK-based study is now underway (in NHS and other) to explore the experience of homeworking, and understand its benefits and challenges in more depth to help inform government policymaking decisions in the UK.

The UK Workforce: Changes to Home Working During the Pandemic & What this Means for the Future.

10.31124/advance.14113262 ◽

2021 ◽

Author(s):

Gemma Johns ◽

Sashin Ahuja ◽

Sara Khalil ◽

Mike Ogonovsky ◽

Alka Ahuja

Keyword(s):

Structured Interviews ◽

Dominant Theme ◽

Working From Home ◽

Wide Range ◽

The Future ◽

Using Data ◽

The Uk

COVID-19 Related Challenges and Advice from Parents of Children with Autism Spectrum Disorder

SciMedicine Journal ◽

10.28991/scimedj-2020-02-si-6 ◽

2020 ◽

Vol 2 ◽

pp. 73-82

Author(s):

China I. Parenteau ◽

Stephen Bent ◽

Bushra Hossain ◽

Yingtong Chen ◽

Felicia Widjaja ◽

...

Keyword(s):

Autism Spectrum Disorder ◽

Children With Autism ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Structured Interviews ◽

Positive Coping ◽

Children With Asd ◽

Wide Range ◽

Families With Children ◽

And Behavior

With the rise of the COVID-19 pandemic and shelter-in-place, families with children with autism spectrum disorder (ASD) face a unique set of challenges related to a diverse set of issues. A qualitative study was conducted in the form of semi-structured interviews from fifteen parents of children and adolescents from a non-public school for children with ASD. Questions covered the following topic areas: general COVID-19 experiences and concerns, changes in the child’s mood and behavior, changes in parent mood and behavior, and coping/advice. Quotes and descriptions from the participants were reviewed and grouped into thematic areas. Findings showed that parents of children with ASD are facing a wide range of challenges, including explaining COVID-19 and safety precautions to their child in a comprehensible way, assisting with e-learning, and guiding their child back into social situations and the community. As children with ASD have difficulties with transitions, parents stated the importance of creating structure in the home by creating schedules and boundaries, while allowing for flexibility as to not over enforce the rigidity children with autism often face. Advice on coping with the additional stressors were also shared. Parents recommended finding time for themselves to reset, utilizing support systems, and reflecting on daily pleasures as positive coping mechanisms. This study aimed to both develop an initial guide for families, teachers and clinicians caring for children with ASD and to create awareness in the community about the challenges presented by COVID-19 and shelter-in-place.

Studying the Study: Reflections on Exploring the Health and Disability Narratives of Long-Term Sickness Benefits Recipients in the UK

The Qualitative Report ◽

10.46743/2160-3715/2014.1230 ◽

2014 ◽

Author(s):

Kayleigh Garthwaite

Keyword(s):

Qualitative Research ◽

Research Process ◽

Ethical Practice ◽

Structured Interviews ◽

Study Approach ◽

Wide Range ◽

Health And Illness ◽

Sickness Benefits ◽

The Uk

Researching sensitive topics such as sickness and disability can encompass a wide range of demands that must be continually negotiated throughout the research process by both the researcher and research participants. Therefore, a studying the study approach is important when exploring the quality and ethical practice in qualitative research on sensitive issues with vulnerable populations. This becomes especially important within a UK context when considering the negative discourse surrounding the sickness benefits process in the UK. Drawing upon semi-structured interviews with 25 long-term sick and disabled benefits recipients in the UK, the study sought to uncover the health and illness narratives of long-term sickness benefits recipients. Within the presentation of methods that were used, a discussion of the methods used in conducting a “study of the study” are considered, providing an illustration of how to do this and what to do with the results of such a reflective piece. The challenges of doing such research are outlined, and the need for a reflective process surrounding the research process is emphasised. Finally, the approach of studying the study is an example of an illustration of how to adopt this approach when considering qualitative research with hard to reach groups.