scholarly journals HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life

2014 ◽  
Vol 1 (3) ◽  
pp. 14-20 ◽  
Author(s):  
Kate Khair ◽  
Anica Phillott ◽  
Christine Loran ◽  
Debra Pollard ◽  
Claire Forrester ◽  
...  
Keyword(s):  
Young Adults ◽  
Family Relationships ◽  
Video Recording ◽  
Well Being ◽  
Ethnographic Study ◽  
Recording Equipment ◽  
Video Memory ◽  
Video Footage ◽  
The Uk ◽  
The Impact

Abstract Introduction: Haemophilia causes joint, muscle and soft tissue bleeds, often leading to pain and disability. These effects can have a significant impact on patients’ well-being and quality of life. There is a need to better understand patient priorities and concerns so that haemophilia healthcare professionals can develop strategies to meet these needs with individuals and their families. Methods: The HaemophiliaLIVE ethnographic study enrolled 16 families from four comprehensive care centres in the UK. Each family received a kit consisting of video recording equipment, seven sealed envelopes each containing a “secret question” and pre-paid envelopes for secure return of the video memory cards. Video footage was recorded daily to examine the impact of haemophilia. Results: Over 30 hours of recorded footage was obtained from 10 families with children/young adults, two young adults, and three older men. Six participants had a current inhibitor. The key themes identified were impact on: family relationships, school, employment and travel. The older participants and those with inhibitors reported that pain was a major factor in their day-to-day lives, and also expressed fear about loss of mobility and pending surgery. Although parents expressed anger and sadness about their child’s haemophilia, those with haemophilia were generally positive about their life experiences. Many reported that their employers were understanding and made additional provision for their haemophilia. Conclusions: Haemophilia has a significant impact on patients and their families. This research provides insight on the support needs of individuals and families.

scholarly journals EFFECT OF ADVERSE CHILDHOOD EXPERIENCES ON DAILY SUPPORT TO FAMILY AND EMOTIONAL WELL-BEING IN ADULTHOOD

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S235-S235
Author(s):  
Jooyoung Kong ◽  
Yin Liu ◽  
David Almeida
Keyword(s):  
Negative Affect ◽  
Family Relationships ◽  
Emotional Support ◽  
Adverse Childhood Experiences ◽  
Family Members ◽  
Well Being ◽  
National Study ◽  
Childhood Experiences ◽  
Adverse Childhood ◽  
The Impact

Abstract Extensive evidence suggests that adverse childhood experiences (ACEs) can lead to negative health effects across a lifetime. This study examines the impact of ACEs on the frequency of providing daily support (i.e., unpaid assistance, emotional support, and disability-related assistance) to family members and the moderating effects of ACEs in the association between providing daily support to family and daily negative affect. Using the National Study of Daily Experiences II, we analyzed a total of 14,912 daily interviews from 2,022 respondents aged 56 on average. Key results showed that a greater number of ACEs were associated with providing more frequent emotional support to family. We also found the significant interaction effect that adults with more ACEs showed greater negative affect on the days when they provided assistance to family members with disabilities. The findings underscore the long-term negative impact of ACEs on daily well-being in the context of family relationships.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

scholarly journals Three models for the regulation of polygenic scores in reproduction

2021 ◽  
pp. medethics-2020-106588
Author(s):  
Sarah Munday ◽  
Julian Savulescu
Keyword(s):  
Human Genetics ◽  
Ethical Issues ◽  
Well Being ◽  
Embryo Selection ◽  
Risk Scores ◽  
Regulatory Regime ◽  
Polygenic Scores ◽  
The Usa ◽  
The Uk ◽  
The Impact

The past few years have brought significant breakthroughs in understanding human genetics. This knowledge has been used to develop ‘polygenic scores’ (or ‘polygenic risk scores’) which provide probabilistic information about the development of polygenic conditions such as diabetes or schizophrenia. They are already being used in reproduction to select for embryos at lower risk of developing disease. Currently, the use of polygenic scores for embryo selection is subject to existing regulations concerning embryo testing and selection. Existing regulatory approaches include ‘disease-based' models which limit embryo selection to avoiding disease characteristics (employed in various formats in Australia, the UK, Italy, Switzerland and France, among others), and 'laissez-faire' or 'libertarian' models, under which embryo testing and selection remain unregulated (as in the USA). We introduce a novel 'Welfarist Model' which limits embryo selection according to the impact of the predicted trait on well-being. We compare the strengths and weaknesses of each model as a way of regulating polygenic scores. Polygenic scores create the potential for existing embryo selection technologies to be used to select for a wider range of predicted genetically influenced characteristics including continuous traits. Indeed, polygenic scores exist to predict future intelligence, and there have been suggestions that they will be used to make predictions within the normal range in the USA in embryo selection. We examine how these three models would apply to the prediction of non-disease traits such as intelligence. The genetics of intelligence remains controversial both scientifically and ethically. This paper does not attempt to resolve these issues. However, as with many biomedical advances, an effective regulatory regime must be in place as soon as the technology is available. If there is no regulation in place, then the market effectively decides ethical issues.

Leveraging Twitter Using Artificial Intelligence to Explore Mental Health Insights in the UK During the COVID-19 Pandemic (Preprint)

2021 ◽  
Author(s):  
Christopher Marshall ◽  
Kate Lanyi ◽  
Rhiannon Green ◽  
Georgie Wilkins ◽  
Fiona Pearson ◽  
...  
Keyword(s):  
Mental Health ◽  
Artificial Intelligence ◽  
Language Processing ◽  
Mental Health Problems ◽  
Well Being ◽  
Research Activity ◽  
Health Crisis ◽  
Key Topics ◽  
The Uk ◽  
The Impact

BACKGROUND There is increasing need to explore the value of soft-intelligence, leveraged using the latest artificial intelligence (AI) and natural language processing (NLP) techniques, as a source of analysed evidence to support public health research activity and decision-making. OBJECTIVE The aim of this study was to further explore the value of soft-intelligence analysed using AI through a case study, which examined a large collection of UK tweets relating to mental health during the COVID-19 pandemic. METHODS A search strategy comprising a list of terms related to mental health, COVID-19, and lockdown restrictions was developed to prospectively collate relevant tweets via Twitter’s advanced search application programming interface over a 24-week period. We deployed a specialist NLP platform to explore tweet frequency and sentiment across the UK and identify key topics of discussion. A series of keyword filters were used to clean the initial data retrieved and also set up to track specific mental health problems. Qualitative document analysis was carried out to further explore and expand upon the results generated by the NLP platform. All collated tweets were anonymised RESULTS We identified and analysed 286,902 tweets posted from UK user accounts from 23 July 2020 to 6 January 2021. The average sentiment score was 50%, suggesting overall neutral sentiment across all tweets over the study period. Major fluctuations in volume and sentiment appeared to coincide with key changes to any local and/or national social-distancing measures. Tweets around mental health were polarising, discussed with both positive and negative sentiment. Key topics of consistent discussion over the study period included the impact of the pandemic on people’s mental health (both positively and negatively), fear and anxiety over lockdowns, and anger and mistrust toward the government. CONCLUSIONS Through the primary use of an AI-based NLP platform, we were able to rapidly mine and analyse emerging health-related insights from UK tweets into how the pandemic may be impacting people’s mental health and well-being. This type of real-time analysed evidence could act as a useful intelligence source that agencies, local leaders, and health care decision makers can potentially draw from, particularly during a health crisis.

scholarly journals The Impact of Non-Standard Work Arrangements and Communication Climate on Organisational and Team Identification and Work-Related Outcomes Amongst Millennials in Chile and the UK

2019 ◽  
Vol 14 (3) ◽  
Author(s):  
Ilka H. Gleibs ◽  
Andrea Lizama Alvarado
Keyword(s):  
Well Being ◽  
Social Identification ◽  
Work Status ◽  
Team Identification ◽  
Communication Climate ◽  
Work Arrangements ◽  
Standard Work ◽  
Work Related ◽  
The Uk ◽  
The Impact

Previous research has found inconsistent results on the impact of work-status (permanent vs. fixed term vs. causal work) on attitudinal and behavioural outcomes. This study explored this topic from a social identity perspective and examines the effect of communication climate, organisational and team identification on job-affective well-being, organisational commitment and intentions to recommend. In Study 1, 631 professionals working in Chile completed our survey. In Study 2, which was pre-registered, 520 professionals from the UK completed the same survey. In both studies we conducted multi-group path analyses comparing employees with three work-statuses: permanent, fixed-term, and casual workers (Study 1: n = 369, 129, and 131, respectively; Study 2: n = 438, 53, and 34, respectively). We found work-status influenced the relationship between organisational and team identification with job-affective well-being, but not with organisational citizenship behaviour or intentions to recommend. Across all groups, communication climate was an important predictor for identification measures, job-affective well-being and intention to recommend. These findings offer an understanding of the dynamics of social identification in the workplace that are related to work-status in the context of two different countries; Chile, a country that is characterised by high rates of fixed-term and casual job agreement and the UK, which has comparatively fewer non-standard work-arrangements.

scholarly journals Studying Away and Well-Being: A Comparison Study Between International and Home Students in the UK

2019 ◽  
Vol 12 (6) ◽  
pp. 1 ◽  
Author(s):  
Eman S. Alharbi ◽  
Andrew P. Smith
Keyword(s):  
Regression Analysis ◽  
International Students ◽  
Healthy Lifestyle ◽  
Well Being ◽  
Academic Work ◽  
University Life ◽  
Course Load ◽  
The Uk ◽  
The Impact

The aim of this study was to investigate the impact of being away from home on the well-being of international and domestic UK university students as a function of demographic factors, course load, support, personality, healthy lifestyle, and their employment of pre-planning and being at university strategies. A total of 510 students (n = 391 international and 117 British) completed an on-line survey to record demographic details and measure their well-being, quality of university life, and their being away from home strategies. The findings showed that International students reported greater quality of university life and used more pre-departure strategies; the female students reported a significantly more negative well-being and higher course demand than their male peers. A regression analysis showed that positive well-being was predicted by a positive personality, a healthy lifestyle, control and support for academic work, quality of university life and employing well-being strategies (using technology without over-reliance on it and the ability to unwind from study). Negative well-being, on the other hand, was predicted by a less positive personality and a less healthy lifestyle, a higher course demand, less control and support for academic work and less quality of university life. Moreover, the regression analysis showed that international students who employed more pre-departure strategies showed less negative well-being.

scholarly journals International Students’ Perceptions and Experiences of British Drinking Cultures

2018 ◽  
Vol 23 (3) ◽  
pp. 572-588 ◽  
Author(s):  
Thomas Thurnell-Read ◽  
Lorraine Brown ◽  
Philip Long
Keyword(s):  
International Students ◽  
International Student ◽  
Social Space ◽  
Qualitative Interviews ◽  
Heavy Drinking ◽  
Well Being ◽  
Drinking Habits ◽  
Public House ◽  
The Uk ◽  
The Impact

While the increased scale and importance of international students to the UK Higher Education sector is now well established, little is known about the ways in which students from non-UK countries experience and interact with the heavy drinking culture that predominates on and near many British universities. Drawing on qualitative interviews, this article analyses the perceptions, attitudes, and experiences of British drinking cultures held by international students studying on postgraduate courses at a UK university. Students report prior awareness of alcohol consumption being important to British culture and recount both positive and negative experiences of witnessing and, for many, participating in drinking alcohol. Students make ready comparisons with the drinking habits and attitudes of their own culture. Further still, many made a distinction between the public house, or ‘pub’, as a welcoming and friendly social space, and bars and nightclubs, where a far greater risk of exposure to violence and harassment was perceived. The article provides theoretical insights to support future and more wide-ranging research into mobile drinking cultures and also suggests practical implications to inform stakeholders with interests in the welfare of international students in the UK in relation to the provision of effective and proactive policies which address the impact of British drinking cultures on international student integration and well-being.

The rate and impact of substance misuse in psychiatric intensive care units (PICUs) in the UK

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Hattie Catherine Ann Moyes ◽  
Lana MacNaboe ◽  
Kate Townsend
Keyword(s):  
Intensive Care ◽  
Intensive Care Units ◽  
Substance Misuse ◽  
Well Being ◽  
Training Programme ◽  
Content Type ◽  
National Quality ◽  
Improvement Programme ◽  
The Uk ◽  
The Impact

Purpose This paper aims to understand the current scale of substance misuse in psychiatric intensive care units (PICUs), identify how substance misuse affects members of staff, patients and the running of wards and explore with staff what resources would be most useful to more effectively manage substance misuse and dual diagnosis on PICUs. Design/methodology/approach The paper used a mixed-methods approach, using a quantitative survey to determine the extent of substance use in PICUs and a co-design workshop to understand the impact of substance misuse on PICU wards, staff and patients. Findings The estimated rate of substance misuse in PICUs over a 12-month period is 67%, with cannabis the most frequently used substance. Despite the range of problems experienced on PICUs because of substance misuse, the availability of training and resources for staff was mixed. Research limitations/implications The findings may not be fully generalisable as research participants were members of a national quality improvement programme, and therefore, may not be representative of all PICUs. Data was collected from clinicians only; if patients were included, they might have provided another perspective on substance misuse on PICUs. Practical implications This paper emphasises the importance of substance misuse training for PICU staff to adequately respond to patients who misuse substances, improve the ward environment, staff well-being and patient outcomes. Originality/value This paper provides an updated estimation of rates of substance misuse in PICUs over a 12-month period and make suggestions for a training programme that can better support staff to address substance misuse on PICUs.

scholarly journals Protocol for a Mixed-Method Investigation of the Impact of the COVID-19 Pandemic and Gambling Practices, Experiences and Marketing in the UK: The “Betting and Gaming COVID-19 Impact Study”

2020 ◽  
Vol 17 (22) ◽  
pp. 8449
Author(s):  
Kate Hunt ◽  
Nathan Critchlow ◽  
Ashley Brown ◽  
Christopher Bunn ◽  
Fiona Dobbie ◽  
...  
Keyword(s):  
Young Adults ◽  
Mixed Method ◽  
Qualitative Interviews ◽  
Risk Groups ◽  
Third Wave ◽  
Policy Makers ◽  
Treatment Providers ◽  
Sports Events ◽  
The Uk ◽  
The Impact

The COVID-19 pandemic led to unprecedented restrictions on people’s movements and interactions, as well as the cancellation of major sports events and social activities, directly altering the gambling landscape. There is urgent need to provide regulators, policy makers and treatment providers with evidence on the patterns and context of gambling during COVID-19 and its aftermath. This protocol describes a study addressing the following three questions: (1) How has COVID-19 changed gambling practices and the risk factors for, and experience of, gambling harms? (2) What is the effect of COVID-19 on gambling marketing? (3) How has COVID-19 changed high risk groups’ gambling experiences and practices? This mixed-method study focuses on two groups, namely young adults and sports bettors. In workpackage-1, we will extend an existing longitudinal survey of gambling in young adults (aged 16–24 years) (first wave conducted June–August 2019), adding COVID-19-related questions to the second wave (July–August 2020) and extending to a third wave in 2021; and undertake a survey of sports bettors in the UK (baseline n = 4000, ~July–August 2020), with follow-ups in ~October–November 2020 and ~February-March 2021. In workpackage-2, we will examine changes in expenditure on paid-for gambling advertising from January 2019 to July 2021 and undertake a mixed-method content analysis of a random sample of paid-for gambling advertising (n ~ 200) and social media marketing (n ~ 100) during the initial COVID-19 “lockdown”. Workpackage-3 will involve qualitative interviews with a purposive sample of (a) young adults (aged 18–24 years) and (b) sports bettors.

scholarly journals Psycho-social impact of developmental dysplasia of the hip and of differential access to early diagnosis and treatment: A narrative study of young adults

2019 ◽  
Vol 7 ◽  
pp. 205031211983601 ◽  
Author(s):  
Tina Samantha Gambling ◽  
Andrew Long
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Early Diagnosis ◽  
Well Being ◽  
Developmental Dysplasia ◽  
The Impact ◽  
Dysplasia Of The Hip ◽  
Over Time ◽  
Differential Access

Objectives: Symptomatic developmental dysplasia of the hip can present in the young, active adult patient and can lead to severe pain and disability at a young age. The overall aim of the study was to deepen the understanding of the impact of developmental dysplasia of the hip on young adults’ quality of life and psycho-social well-being, focusing on how differential access to early diagnosis impacted the trajectory of the disease and treatment options. Methods: We conducted semi-structured interviews and gathered online stories from 97 participants. A narrative and thematic analysis was used to integrate the dataset producing a multi-dimensional view. Results: A narrative plot showing how events unfolded over time was identified for each participant. Two common plots were identified: Plot 1 focused around those participants who received a prompt diagnosis and were treated within 12 months of diagnosis (n = 22) and Plot 2 focused around those who experienced a late/delayed diagnosis (mean = 8 years; range = 12–364 months) (n = 75) and thus delayed treatment. Participants in Plot 2 became more debilitated over time and experienced chronic hip pain for a prolonged period before an accurate diagnosis and/or intervention was made. It was clear from the narratives when pain persists over time, participants’ quality of life and psycho-social well-being were affected. Conclusions: Developmental dysplasia of the hip is an under-recognised condition; more research is needed to develop a clear clinical picture that can be used to alert frontline health professionals to the potential for developmental dysplasia of the hip so that they can promptly diagnose patients and refer them to specialist centres. Patients can also experience a profound impact on their quality of life and psycho-social well-being. Patients actively seek information from support groups about all aspects of their condition. Further research is required to determine the long-term impact of developmental dysplasia of the hip to develop evidence-based information for clinicians and patients.

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