scholarly journals Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Liz Gill ◽  
Sue Burrell ◽  
John Chamberlayne ◽  
Stephen Lombardelli ◽  
Jordanna Mora ◽  
...  
Keyword(s):  
Family Relationships ◽  
Online Survey ◽  
Burden Of Illness ◽  
Leisure Activities ◽  
Acute Attack ◽  
Psychological Wellbeing ◽  
Quantitative And Qualitative Research ◽  
Social Leisure ◽  
Acute Attacks ◽  
The Uk

Abstract Background This study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates. The overall impact of AHP on patients and caregivers, including their quality of life, was explored. The nature and treatment of acute attacks, experiences of long-term heme arginate treatment and access to other appropriate treatment, and the extent of and treatment for chronic symptoms were also investigated within this study. Methods Patient and caregiver data were collected via an online survey of members of the British Porphyria Association, followed by an optional 1-h telephone interview. Results Thirty-eight patients and 10 caregivers responded to the survey. Of those, 10 patients and three caregivers completed follow-up interviews. Overall, 19 patients (50%) had experienced an acute attack within the previous 2 years, and the severity and types of symptoms experienced during or between acute attacks varied considerably. There were no clear definitions among patients for ‘mild’ or ‘severe’ attacks. Treatments and treatment settings used to manage attacks also varied. Following unsatisfactory care experiences at hospitals, some patients reported avoiding further hospital services for later attacks. Therefore, using settings of care as a measure of attack severity should be avoided. Ninety-four percent of patients also experienced chronic symptoms, which were as varied as acute attacks. Pain was the predominant chronic symptom and was managed with opioids in severe cases. Regardless of AAR, porphyria heavily impacted the daily lives of patients and caregivers. Although patients experiencing frequent attacks generally endured a greater impact on their daily life, patients with less frequent attacks also experienced impacts on all domains (social, leisure activities, relationship with family, relationships, psychological wellbeing, finances, employment, and study). Caregivers were most affected in the finance, relationships with family, and employment domains, and just over half of the caregivers reported a moderate impact on their psychological wellbeing. Conclusions/implications The burden of illness with AHP is high across all patients, regardless of frequency of attacks, and AHP negatively affects patients and caregivers alike.

scholarly journals Patient and Caregiver Experiences of Living With Acute Hepatic Porphyria in the UK: A Mixed-Methods Study

2020 ◽  
Author(s):  
Liz Gill ◽  
Sue Burrell ◽  
John Chamberlayne ◽  
Stephen Lombardelli ◽  
Jordanna Mora ◽  
...  
Keyword(s):  
Family Relationships ◽  
Online Survey ◽  
Burden Of Illness ◽  
Acute Attack ◽  
Psychological Wellbeing ◽  
Daily Lives ◽  
Quantitative And Qualitative Research ◽  
Acute Attacks ◽  
The Uk ◽  
At Home

Abstract BackgroundThis study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates (AARs). The overall impact of AHP on patients and caregivers, including their quality of life, was explored. The nature and treatment of acute attacks, experiences of long-term heme arginate treatment and access to other appropriate treatment, as well as the extent of, and treatment for, chronic symptoms, were also included within this study. MethodsPatient and caregiver data were collected via an online survey of members of the British Porphyria Association, followed by an optional one-hour telephone interview. ResultsThirty-eight patients and 10 caregivers responded to the survey. Of those, 10 patients and three caregivers completed follow-up interviews. Overall, 19 patients (50%) had experienced an acute attack within the previous two years, and the severity and types of symptoms experienced during or between acute attacks varied considerably. There was no clear definition among patients or caregivers of a ‘mild’ or ‘severe’ attack. Treatment used to manage attacks also varied, and previous experience with hospital care while managing an attack also affected whether a patient chose to return to hospital or manage the attack at home. Managing the attack at home is therefore not a signifier of the severity of the attack itself. Ninety-four percent of patients also experienced chronic symptoms, which were as varied as acute attacks. Pain was the predominant chronic symptom and was managed with opioids in severe cases. Regardless of AAR, porphyria heavily impacted the daily lives of patients and caregivers. Although patients experiencing frequent attacks generally endured a greater impact on their daily life, patients with less frequent attacks also experienced impacts on all domains (social, pain, discomfort, mobility, diet, relationship with family, relationships, psychological wellbeing, finances, employment and study). Caregivers were most affected in finance, relationships with family and employment domains, and just over half of the caregivers reported a moderate impact on their psychological wellbeing. Conclusions/implicationsThe burden of illness with AHP is high across all patients, regardless of frequency of attacks, and AHP negatively affects patients and caregivers alike.

scholarly journals Burnout amongst neurosurgical trainees in the UK and Ireland

2021 ◽  
Author(s):  
Nadia Liber Salloum ◽  
Phillip Correia Copley ◽  
Marco Mancuso-Marcello ◽  
John Emelifeonwu ◽  
Chandrasekaran Kaliaperumal
Keyword(s):  
Risk Factors ◽  
Workplace Bullying ◽  
Online Survey ◽  
Medical Profession ◽  
Leisure Activities ◽  
Attrition Rates ◽  
Workplace Stressors ◽  
Potential Risk Factors ◽  
The Uk ◽  
Enhance Patient Care

Abstract Introduction Burnout is becoming an increasingly recognised phenomenon within the medical profession. This study aims to investigate the presence of burnout amongst neurosurgical trainees in the UK and Ireland as well as investigating potential exacerbating and protective factors. Method An online survey was sent to all neurosurgical trainees in the UK and Ireland via the British Neurosurgical Trainees’ Association (BNTA) mailing list. Responding participants anonymously completed the Copenhagen Burnout Inventory (CBI) and answered questions about known risk factors for burnout including workplace environment, workplace bullying, time spent on leisure activities and sleep and reported likelihood of leaving neurosurgery. We also collated data on responders’ demographics. We compared CBI scores for participants with and without risk factors to determine correlation with CBI. Results There were 75 respondents (response rate 42%) from a range of ages and all training grades, 72% of whom were male. The median CBI score was 38.85 (IQR 17.76). Participants showed a higher degree of personal and workplace burnout (median CBIs of 47.02, IQR 25.00; and 49.14, IQR 19.64, respectively) compared with patient-related burnout (median CBI 18.67, IQR 25.00). Participants with the following self-reported risk factors were significantly more likely to have higher CBIs: workplace bullying (p = 0.01), getting on less well with colleagues (p < 0.05), working longer hours (p < 0.05) and insufficient sleep, exercise and leisure time (all p < 0.01). Those with higher CBI scores were more likely to consider leaving neurosurgical training (p = 0.01). Conclusion We identified a high burnout incidence in a cohort representative of UK neurosurgical trainees, although our results may have been skewed somewhat by selection bias. We determined potential risk factors for burnout related to specific workplace stressors and time for non-work activities. In the future, changes to training curricula should address these issues, aiming to improve training, enhance patient care and reduce attrition rates.

scholarly journals The COVID-19 Psychological Wellbeing Study: Understanding the Longitudinal Psychosocial Impact of the COVID-19 Pandemic in the UK; a Methodological Overview Paper

2020 ◽  
Author(s):  
Cherie Armour ◽  
Emily McGlinchey ◽  
Sarah Butter ◽  
Kareena McAloney-Kocaman ◽  
Kerri E. McPherson
Keyword(s):  
Online Survey ◽  
Longitudinal Design ◽  
Adult Population ◽  
Psychological Impact ◽  
Psychological Wellbeing ◽  
Baseline Survey ◽  
Future Research ◽  
Research Directions ◽  
Using Data ◽  
The Uk

Abstract The COVID-19 Psychological Wellbeing Study was designed and implemented as a rapid survey of the psychosocial impacts of the novel severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), known as COVID-19 in residents across the United Kingdom. This study utilised a longitudinal design to collect online survey based data. The aim of this paper was to describe (1) the rationale behind the study and the corresponding selection of constructs to be assessed; (2) the study design and methodology; (3) the resultant sociodemographic characteristics of the full sample; (4) how the baseline survey data compares to the UK adult population (using data from the Census) on a variety of sociodemographic variables; (5) the ongoing efforts for weekly and monthly longitudinal assessments of the baseline cohort; and (6) outline future research directions. We believe the study is in a unique position to make a significant contribution to the growing body of literature to help understand the psychological impact of this pandemic and inform future clinical and research directions that the UK will implement in response to COVID-19.

scholarly journals Leisure Type, Leisure Satisfaction and Adolescents’ Psychological Wellbeing

2013 ◽  
Vol 7 (2) ◽  
pp. 53-62 ◽  
Author(s):  
Kyulee Shin ◽  
Sukkyung You
Keyword(s):  
Negative Impact ◽  
Leisure Activities ◽  
Leisure Activity ◽  
Female Students ◽  
Psychological Wellbeing ◽  
Leisure Satisfaction ◽  
Positive Effects ◽  
Social Leisure ◽  
The Impact ◽  
Active Leisure

This study examined the impact of leisure type on leisure satisfaction, along with its subsequent effects on adolescents’ psychological wellbeing, using a longitudinal sample of 3,449 Korean adolescents at two time points (2003 and 2004). The results indicated that the type of leisure activity (measured in 10th grade) had differential effects on students’ long-term psychological wellbeing (measured in 11th grade) according to sex. Specifically, for male students, only active leisure (i.e., sports activities) had a positive effect on leisure satisfaction. By contrast, for female students, although active leisure activities exerted positive effects on leisure satisfaction, passive leisure (i.e., sedentary activities) and social leisure (i.e., spending time with friends) had a negative impact on students’ leisure satisfaction. For both male and female students, leisure satisfaction had longitudinal effects on their psychological wellbeing, with increasing life satisfaction and decreasing stress.

scholarly journals Understanding the longitudinal psychosocial impact of the COVID-19 pandemic in the United Kingdom; a methodological overview of The COVID-19 Psychological Wellbeing Study

2020 ◽  
Author(s):  
Cherie Armour ◽  
Emily McGlinchey ◽  
Sarah Butter ◽  
Kareena McAloney-Kocaman ◽  
Kerri E. McPherson
Keyword(s):  
United Kingdom ◽  
Online Survey ◽  
Longitudinal Design ◽  
Adult Population ◽  
Psychological Wellbeing ◽  
Baseline Survey ◽  
Future Research ◽  
Research Directions ◽  
The United Kingdom ◽  
The Uk

The COVID-19 Psychological Wellbeing Study was designed and implemented as a rapid survey of the psychosocial impacts of the novel severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), known as COVID-19 in residents across the United Kingdom. This study utilised a longitudinal design to collect online survey based data. The aim of this paper was to, describe (1) the rationale behind the study and the corresponding selection of constructs to be assessed; (2) the study design and methodology; (3) the resultant sociodemographic characteristics of the full sample (4) how the baseline survey data compares to the UK adult population (using data from the Census) on a variety of sociodemographic variables; (5) the ongoing efforts for weekly and monthly longitudinal assessments of the baseline cohort and (6) outline future research directions. We believe the study is in a unique position to make a significant contribution to the growing body of literature to help understand the psychological impact of this pandemic and inform future clinical and research directions that the UK will implement in response to COVID19.

scholarly journals Survey of young people in one region of the UK on accessing COVID-19 information (SOCIAL)

2021 ◽  
Vol 5 (1) ◽  
pp. e000942
Author(s):  
Oliver G P Lawton ◽  
Sarah A Lawton ◽  
Lisa Dikomitis ◽  
Joanne Protheroe ◽  
Joanne Smith ◽  
...  
Keyword(s):  
Social Media ◽  
Young People ◽  
Significant Role ◽  
Online Survey ◽  
Descriptive Statistics ◽  
Sources Of Information ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Education Gaps ◽  
The Uk

COVID-19 has significantly impacted young people’s lives yet little is known about the COVID-19 related sources of information they access. We performed a cross-sectional survey of pupils (11–16 years) in North Staffordshire, UK. 408 (23%) pupils responded to an online survey emailed to them by their school. Descriptive statistics were used to summarise the data. Social media, accessed by 68%, played a significant role in the provision of information, despite it not being considered trustworthy. 89% felt that COVID-19 had negatively affected their education. Gaps in the provision of information on COVID-19 have been identified.

scholarly journals Experiences and impact of international medical volunteering: a multi-country mixed methods study

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e041599 ◽  
Author(s):  
Mary McCauley ◽  
Joanna Raven ◽  
Nynke van den Broek
Keyword(s):  
Low Income ◽  
Online Survey ◽  
Positive Impact ◽  
Healthcare Providers ◽  
International Medical ◽  
Middle Income ◽  
Use Of Resources ◽  
The Uk ◽  
Medical Volunteers ◽  
The Impact

ObjectiveTo assess the experience and impact of medical volunteers who facilitated training workshops for healthcare providers in maternal and newborn emergency care in 13 countries.SettingsBangladesh, Ghana, India, Kenya, Malawi, Namibia, Nigeria, Pakistan, Sierra Leone, South Africa, Tanzania, UK and Zimbabwe.ParticipantsMedical volunteers from the UK (n=162) and from low-income and middle-income countries (LMIC) (n=138).Outcome measuresExpectations, experience, views, personal and professional impact of the experience of volunteering on medical volunteers based in the UK and in LMIC.ResultsUK-based medical volunteers (n=38) were interviewed using focus group discussions (n=12) and key informant interviews (n=26). 262 volunteers (UK-based n=124 (47.3%), and LMIC-based n=138 (52.7%)) responded to the online survey (62% response rate), covering 506 volunteering episodes. UK-based medical volunteers were motivated by altruism, and perceived volunteering as a valuable opportunity to develop their skills in leadership, teaching and communication, skills reported to be transferable to their home workplace. Medical volunteers based in the UK and in LMIC (n=244) reported increased confidence (98%, n=239); improved teamwork (95%, n=232); strengthened leadership skills (90%, n=220); and reported that volunteering had a positive impact for the host country (96%, n=234) and healthcare providers trained (99%, n=241); formed sustainable partnerships (97%, n=237); promoted multidisciplinary team working (98%, n=239); and was a good use of resources (98%, n=239). Medical volunteers based in LMIC reported higher satisfaction scores than those from the UK with regards to impact on personal and professional development.ConclusionHealthcare providers from the UK and LMIC are highly motivated to volunteer to increase local healthcare providers’ knowledge and skills in low-resource settings. Further research is necessary to understand the experiences of local partners and communities regarding how the impact of international medical volunteering can be mutually beneficial and sustainable with measurable outcomes.

scholarly journals How is the COVID-19 lockdown impacting the mental health of parents of school-age children in the UK? A cross-sectional online survey

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e043397
Author(s):  
Austen El-Osta ◽  
Aos Alaa ◽  
Iman Webber ◽  
Eva Riboli Sasco ◽  
Emmanouil Bagkeris ◽  
...  
Keyword(s):  
Mental Health ◽  
Physical Activity ◽  
Social Isolation ◽  
Online Survey ◽  
Female Gender ◽  
School Age Children ◽  
School Age ◽  
Cross Sectional ◽  
The Uk ◽  
The Impact

ObjectiveInvestigate the impact of the COVID-19 lockdown on feelings of loneliness and social isolation in parents of school-age children.DesignCross-sectional online survey of parents of primary and secondary school-age children.SettingCommunity setting.Participants1214 parents of school-age children in the UK.MethodsAn online survey explored the impact of lockdown on the mental health of parents with school-age children, and in particular about feelings of social isolation and loneliness. Associations between the UCLA Three-Item Loneliness Scale (UCLATILS), the Direct Measure of Loneliness (DMOL) and the characteristics of the study participants were assessed using ordinal logistic regression models.Main outcome measuresSelf-reported measures of social isolation and loneliness using UCLATILS and DMOL.ResultsHalf of respondents felt they lacked companionship, 45% had feelings of being left out, 58% felt isolated and 46% felt lonely during the first 100 days of lockdown. The factors that were associated with higher levels of loneliness on UCLATILS were female gender, parenting a child with special needs, lack of a dedicated space for distance learning, disruption of sleep patterns and low levels of physical activity during the lockdown. Factors associated with a higher DMOL were female gender, single parenting, parenting a child with special needs, unemployment, low physical activity, lack of a dedicated study space and disruption of sleep patterns during the lockdown.ConclusionsThe COVID-19 lockdown has increased feelings of social isolation and loneliness among parents of school-age children. The sustained adoption of two modifiable health-seeking lifestyle behaviours (increased levels of physical activity and the maintenance of good sleep hygiene practices) wmay help reduce feelings of social isolation and loneliness during lockdown.

scholarly journals Impact of COVID-19 pandemic social restriction measures on people with rheumatic and musculoskeletal diseases in the UK: a mixed-methods study

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e048772
Author(s):  
Toby O Smith ◽  
Pippa Belderson ◽  
Jack R Dainty ◽  
Linda Birt ◽  
Karen Durrant ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Qualitative Study ◽  
Online Survey ◽  
Musculoskeletal Diseases ◽  
Community Dwelling ◽  
Secondary Outcome ◽  
Healthcare Provision ◽  
Social Restriction ◽  
The Uk ◽  
The Impact

ObjectivesTo determine the impact of COVID-19 pandemic social restriction measures on people with rheumatic and musculoskeletal diseases (RMDs) and to explore how people adapted to these measures over time.DesignMixed-methods investigation comprising a national online longitudinal survey and embedded qualitative study.SettingUK online survey and interviews with community-dwelling individuals in the East of England.ParticipantsPeople in the UK with RMDs were invited to participate in an online survey. A subsection of respondents were invited to participate in the embedded qualitative study.Primary and secondary outcome measuresThe online survey, completed fortnightly over 10 weeks from April 2020 to August 2020, investigated changes in symptoms, social isolation and loneliness, resilience and optimism. Qualitative interviews were undertaken assessing participant’s perspectives on changes in symptoms, exercising, managing instrumental tasks such a shopping, medication and treatment regimens and how they experienced changes in their social networks.Results703 people with RMDs completed the online survey. These people frequently reported a deterioration in symptoms as a result of COVID-19 pandemic social restrictions (52% reported increase vs 6% reported a decrease). This was significantly worse for those aged 18–60 years compared with older participants (p=0.017). The qualitative findings from 26 individuals with RMDs suggest that the greatest change in daily life was experienced by those in employment. Although some retired people reported reduced opportunity for exercise outside their homes, they did not face the many competing demands experienced by employed people and people with children at home.ConclusionsPeople with RMDs reported a deterioration in symptoms when COVID-19 pandemic social restriction measures were enforced. This was worse for working-aged people. Consideration of this at-risk group, specifically for the promotion of physical activity, changing home-working practices and awareness of healthcare provision is important, as social restrictions continue in the UK.

scholarly journals The impact of sitting time and physical activity on mental health during COVID-19 lockdown

2021 ◽  
Author(s):  
Matthew Pears ◽  
Susanna Kola-Palmer ◽  
Liane Beretta De Azevedo
Keyword(s):  
Mental Health ◽  
Physical Activity ◽  
Health Outcomes ◽  
Online Survey ◽  
Depression Score ◽  
Sitting Time ◽  
Multiple Stepwise Regression Analysis ◽  
Previous Diagnosis ◽  
The Uk ◽  
The Impact

Abstract Objective The primary aim of this study was to investigate the association between physical activity (PA) and sitting time on adults’ mental health (i.e., depression, anxiety and wellbeing) and the influence of mediators and confounders. Methods An online survey was disseminated in the UK between May and June 2020. A total of 284 participants (33.5 ± 12.4 years) self-reported their PA, sitting time and mental health through validated questionnaires. Results Multiple stepwise regression analysis revealed that being of younger age, female, on a lower income, with one or more comorbid health conditions, with a previous diagnosis of mood disorder and increased sitting time independently correlated with higher depression scores (F (13,219) = 12.31, p < 0.001), and explained 42% of the variance. Similar results were found for wellbeing where socio-demographic, health outcomes and sitting time influenced the subjective wellbeing (F (14,218) = 5.77, p < 0.001, 27% variance), although only socio-demographic and health outcomes contributed to the variation in anxiety score (F (13,219) = 7.84, p < 0.001, 32% variance). PA did not explain variation when sitting time was taken into account in any of the models. Combined analysis revealed that participants with lower sedentary time (< 8 h) and with both low or moderate and high PA presented a significantly lower depression score [low PA: (B = −2.7, 95% CI −4.88, −0.52); moderate and high PA (B = −2.7, −4.88, −0.52)]. Conclusion Sitting time was strongly associated with adverse mental health during COVID-19 lockdown and should be considered in future public health recommendations.

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