Life Satisfaction of Neurotypical Women in Intimate Relationship With a Partner Who Has Asperger’s Syndrome: An Exploratory Study

Asperger’s syndrome (AS) is a neurodevelopmental disorder characterised by an average or above average IQ, impairments in social interactions, communication and empathy, restricted and repetitive patterns of behaviour and sensory sensitivities. Numerous published empirical studies focus on individuals with AS within a number of contexts (e.g., education, health, workplace) and the impact the core characteristics of AS have upon the individual with AS within these contexts. Although there is general consensus among researchers, clinicians and other persons with interest in this field of study that adults with AS do enter into successful careers, marry and have children, there is a paucity of empirical data on the impact that AS characteristics may have upon a non-Asperger’s or neurotypical (NT) spouse or intimate partner. Stage 1 of this study conducted a systematic review of the published peer-reviewed literature and found that there were no empirical data focused on the impact of AS characteristics upon an NT partner within the context of an intimate relationship. Stage 2 of this project was an exploratory study focused on the subjective wellbeing (SWB/life satisfaction) of NT women within this context, with a secondary focus on empathy characteristics. An online survey collected quantitative data on SWB and empathy using the Personal Wellbeing Index – Adult (PWI-A) and the Cambridge Behaviour Scale (EQ). An open-ended question was used to collect qualitative data. Relevant demographic data was also sourced. Survey data from 500 NT women and 53 controls comprised the final data set. The study found that NT women experienced a statistically significant lower SWB than controls and the PWI-A normative sample for Australian women; and NT women had a statistically significantly higher EQ than the controls and the normative sample. Implications of these findings, limitations of the study and recommendations for further research are discussed

Why did England change its law on deceased organ donation in 2019? The dynamic interplay between evidence and values

In the three years since the law on adult deceased organ donation consent in England changed to include an opt-out system, there has been no discernible change to donation rates. The lack of a positive impact on donation rates was predicted by many of those who took part in debates before and during the passage of the Bill through Parliament. This invites the question as to why England moved to an opt-out system for organ donation despite equivocal evidence of likely benefit and opposition from expert health professional organisations. To address this question qualitative analyses of Parliamentary debates on organ donation was undertaken. This revealed a shift from a dominant position, which gave primacy to the evidence of likely effects, towards a more normative position where a deemed consent option was viewed as the ‘correct thing to do’ and the limited and conflicting evidence viewed in a positive light. By 2017, following Wales's move to an opt-out system, together with continued lobbying for similar changes for England by professional and patient groups, alongside sustained public popularity for organ donation, the balance of opinion had shifted towards a system where deemed consent would become the default position for most English adult

Potential donor family behaviours, experiences and decisions following implementation of the Organ Donation (Deemed Consent) Act 2019 in England:A qualitative study

BACKGROUND: In May 2020, England implemented "deemed consent" legislation, to make it easier for individuals to donate their organs and convey their decision when alive. Families are supposed to support the decision but can still override it if they disagree. We aimed to learn more about this changed role when families were approached about organ donation.METHODS: A qualitative study using semi-structured interviews with families, feedback from nurses, comparisons with audit data, and public involvement. We used framework analysis with a health systems perspective and utilitarian theory to explore if the law worked.FINDINGS: 103 participants were interviewed representing 83 potential donation cases. In 31/83 (37%) cases donation was fully supported, in 41/83 (49%) cases families supported retrieval of some organs, tissues and procedures, and in 11/83 (13%) cases families declined completely. Themes explaining why the law was not (yet) working included: Understanding and agreeing the family's role, confusion about deemed consent, not supporting the deceased expressed decisions, organ donation as too much of a harm, the different experiences of donation pathways, transition from end-of-life to organ donation discussions, experiences of 'consent', paperwork and processes. Families frequently questioned if their relative wanted to have a surgery rather than supporting the person who died to save lives.CONCLUSION: Families use the unique experience of their relative dying in intensive care to create alternate narratives whereby the outcome satisfies their own utility and not necessarily those of the potential donor. New public ongoing media campaigns crafted to be more supportive of organ donation as a benefit to transplant recipients could help families overcome the many difficulties they encounter at the bedside.IMPLICATIONS FOR CLINICAL PRACTICE: The soft opt-out policy has not empowered nurses to help families at their most vulnerable to increase their support for and consent to deceased organ donation.</p

Patient reported outcomes and recruitment rates following the introduction of principled patient information leaflets (PrinciPILs) : Protocol for a meta-analysis

Peer reviewe

Trends in organ donation in England, Scotland and Wales in the context of the COVID-19 pandemic and ‘opt-out' legislation

Background:In May 2020, England implemented soft ‘opt-out’ or ‘deemed consent’ for deceased donation with the intention of raising consent rates. However, this coincided with the COVID-19 pandemic, making it difficult to assess the early impact of the law change. Wales and Scotland changed their organ donation legislation to implement soft opt-out systems in 2015 and 2021 respectively. This study provides a descriptive analysis of changes in consent and transplant rates for deceased organ donation in England, Scotland and Wales.Methods:Logistic regression and descriptive trend analysis were employed to assess the probability of a patient who died in critical care becoming a donor, and to report consent rates using data, respectively, from the Intensive Care National Audit and Research Centre (ICNARC) in England from 1 April 2014 to 30 September 2021, and from the Potential Donor Audit for England, Scotland and Wales from April 2010 to June 2023.Results:The number of eligible donors in April-June 2020 were 56.5%, 59.3% and 57.6% lower in England, Scotland and Wales relative to April-June 2019 (pre-pandemic). By April-June 2023, the number of eligible donors had recovered to 87.4%, 64.2% and 110.3%, respectively, of their levels in 2019. The consent rate in England, Scotland and Wales reduced from 68.3%, 63.0% and 63.6% in April-June 2019 to 63.2%, 60.5% and 56.3% in April-June 2023.Conclusions:While the UK organ donation system shows signs of recovery from the COVID-19 pandemic, the number of eligible potential donors and consent rates remain below their pre-pandemic levels

Analysis of content and online public responses to media articles that raise awareness of the opt-out system of consent to organ donation in England

BACKGROUND: Preceded by a national media campaign, in May 2020, England switched to a soft opt-out system of organ donation which rests on the assumption that individuals meeting specific criteria have consented to organ donation unless they have expressed otherwise. We aimed to learn more about how the changes were communicated, how people responded and any discrepancies between key messages and how they were interpreted by the public. METHODS: Summative content analysis of 286 stories and related reader-generated comments in leading UK online news sources (April 2019 to May 2021). Further detailed thematic analysis of 21 articles with reader-generated content, complemented by thematic content analysis coding of all 286 stories. RESULTS: Most media coverage on both organ donation and the law change was positive, with little variation over time or between publications. The importance of organ donation, benefits of the law change, and emotive stories (often involving children) of those who had donated an organ described as "superheroes" or those who had received organs as benefiting from a "miracle" were frequently cited. In contrast, reader-generated comments were markedly more negative, for example, focusing on loss of individual freedom and lack of trust in the organ donation system. Commentators wished to be able to choose who their organs were donated to, were dismissive and blaming towards minority ethnic groups, including undermining legitimate worries about the compatibility of organ donation with religious beliefs and end of life cultural norms, understanding and acceptance of brain-stem death and systemic racism. Misinformation including use of inflammatory language was common. CONCLUSION: The portrayal of donors and recipients as extraordinary is unlikely to help to normalise organ donation. Undermining legitimate concerns, in particular those from ethnic minorities, can alienate and encourage harmful misinformation in underrepresented groups. The discrepancies between the tone of the articles and the readers comments suggests a lack of trust across the public, health, policy and media outlets. Easily accessible, ongoing and tailored sources are needed to mitigate misinformation and disinformation and ensure key messages are better understood and accepted in order to realise the ambitions of soft opt-out organ donation policies

Scabies outbreaks in ten care homes for elderly people: a prospective study of clinical features, epidemiology, and treatment outcomes

Background Scabies outbreaks in residential and nursing care homes for elderly people are common, subject to diagnostic delay, and hard to control. We studied clinical features, epidemiology, and outcomes of outbreaks in the UK between 2014 and 2015. Methods We did a prospective observational study in residential care homes for elderly people in southeast England that reported scabies outbreaks to Public Health England health protection teams. An outbreak was defined as two or more cases of scabies (in either residents or staff) at a single care home. All patients who provided informed consent were included; patients with dementia were included if a personal or nominated consultee (ie, a family member or nominated staff member) endorsed participation. Dermatology-trained physicians examined residents at initial clinical visits, which were followed by two mass treatments with topical scabicide as per local health protection team guidance. Follow-up clinical visits were held 6 weeks after initial visits. Scabies was diagnosed through pre-defined case definitions as definite, probable, or possible with dermatoscopy and microscopy as appropriate. Findings 230 residents were examined in ten outbreaks between Jan 23, 2014, and April 13, 2015. Median age was 86·9 years (IQR 81·5–92·3), 174 (76%) were female, and 157 (68%) had dementia. 61 (27%) residents were diagnosed with definite, probable, or possible scabies, of whom three had crusted scabies. Physical signs differed substantially from classic presentations. 31 (51%) of the 61 people diagnosed with scabies were asymptomatic, and only 25 (41%) had burrows. Mites were visualised with dermatoscopy in seven (11%) patients, and further confirmed by microscopy in three (5%). 35 (57%) cases had signs of scabies only on areas of the body that would normally be covered. Dementia was the only risk factor for a scabies diagnosis that we identified (odds ratio 2·37 [95% CI 1·38–4·07]). At clinical follow-up, 50 people who were initially diagnosed with scabies were examined. No new cases of scabies were detected, but infestation persisted in ten people. Interpretation Clinical presentation of scabies in elderly residents of care homes differs from classic descriptions familiar to clinicians. This difference probably contributes to delayed recognition and suboptimal management in this vulnerable group. Dermatoscopy and microscopy were of little value. Health-care workers should be aware of the different presentation of scabies in elderly people, and should do thorough examinations, particularly in people with dementia. Funding Public Health England and British Skin Foundation

How do frontline staff use patient experience data for service improvement? Findings from an ethnographic case study evaluation

Funding Information: The authors would like to thank the following: the ward teams and senior management teams at the six participating case study sites. Neil Churchill, Angela Coulter, Ray Fitzpatrick, Crispin Jenkinson, Trish Greenhalgh and Sian Rees who were co-investigators on the study, contributing to the original design and conduct of the study. Esther Ainley and Steve Sizmur from Picker Institute Europe, who contributed to data collection and analysis. Prof. John Gabbay and Prof. Andr? le May, University of Southampton, for facilitating the learning community meetings. The members of the lay advisory panel: Barbara Bass, Tina Lonhgurst, Georgina McMasters, Carol Munt, Gillian Richards, Tracey Richards, Gordon Sturmey, Karen Swaffield, Ann Tomlime and Paul Whitehouse. The external members of the Study Steering Committee: Joanna Foster, Tony Berendt, Caroline Shuldham, Joanna Goodrich, Leigh Kendall, Bernard Gudgin and Manoj Mistry. At the time of conducting the research LL and SP were employed by the University of Oxford. Preliminary findings from the study have been presented publicly at the following conferences: European Association for Communication in Healthcare 2016; The International Society for Quality in Healthcare 2017; Health Services Research UK 2017; Medical Sociology 2018. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. Publisher Copyright: © The Author(s) 2020. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.Peer reviewedPublisher PD

A machine-learning approach to estimating public intentions to become a living kidney donor in England: Evidence from repeated cross-sectional survey data

BACKGROUND: Living kidney organ donors offer a cost-effective alternative to deceased organ donation. They enable patients with life-threatening conditions to receive grafts that would otherwise not be available, thereby creating space for other patients waiting for organs and contributing to reducing overall waiting times for organs. There is an emerging consensus that an increase in living donation could contribute even more than deceased donation to reducing inequalities in organ donation between different population sub-groups in England. Increasing living donation is thus a priority for National Health Service Blood and Transplant (NHSBT) in the United Kingdom. METHODS: Using the random forest model, a machine learning (ML) approach, this study analyzed eight waves of repeated cross-sectional survey data collected from 2017 to 2021 (n = 14,278) as part of the organ donation attitudinal tracker survey commissioned by NHSBT in England to identify and help predict key factors that inform public intentions to become living donors. RESULTS: Overall, around 58.8% of the population would consider donating their kidney to a family member (50.5%), a friend (28%) or an unknown person (13.2%). The ML algorithm identified important factors that influence intentions to become a living kidney donor. They include, in reducing order of importance, support for organ donation, awareness of organ donation publicity campaigns, gender, age, occupation, religion, number of children in the household, and ethnic origin. Support for organ donation, awareness of public campaigns, and being younger were all positively associated with predicted propensity for living donation. The variable importance scores show that ethnic origin and religion were less important than the other variables in predicting living donor intention. CONCLUSION: Factors influencing intentions to become a living donor are complex and highly individual in nature. Machine learning methods that allow for complex interactions between characteristics can be helpful in explaining these decisions. This work has identified important factors and subgroups that have higher propensity for living donation. Interventions should target both potential live donors and recipients. Research is needed to explore the extent to which these preferences are malleable to better understand what works and in which contexts to increase live organ donation