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 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 A flash in the pan or a permanent change? The growth of homeworking during the pandemic and its effect on employee productivity in the UK

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Alan Felstead ◽  
Darja Reuschke
Keyword(s):  
Online Survey ◽  
Labour Force ◽  
Business Case ◽  
Employee Productivity ◽  
Cross Sectional ◽  
Working At Home ◽  
Content Type ◽  
Nationally Representative ◽  
The Uk ◽  
At Home

PurposeThis paper has three aims: Firstly, it puts the pandemic-induced surge in homeworking into context by charting trends in homeworking in the UK since the early 1980s. Secondly, it examines what effect the growth in homeworking during the pandemic has had on employees' self-reported levels of productivity. Thirdly, it assesses whether the spike in homeworking is a flash in the pan or a permanent feature of the post-pandemic world.Design/methodology/approachThe paper uses cross-sectional and longitudinal data taken from three nationally representative surveys of workers: (1) the Labour Force Survey (LFS), an official government survey carried out between 1981 and 2019; (2) a special module of the Opinions and Lifestyle Survey (OPN), also an official government survey, which has been run every week since the pandemic began in March 2020; and (3) the Understanding Society Covid-19 Study, an online survey of the same people interviewed on six occasions during 2020.FindingsThe recent surge in homeworking in the UK during the pandemic has been dramatic. Before 2020, it had taken almost 40 years for homeworking to grow by three percentage points, but its prevalence grew eight-fold virtually overnight as people were instructed to work at home if they can because of the pandemic. Despite theories and predictions to the contrary, employees reported that their productivity was not adversely affected. Seven out of ten employees said that they were able to get as much done while working at home in June 2020 as they were able to do six months earlier. By September 2020, this proportion had risen to 85%. However, around one in six homeworkers reported that their productivity had fallen.Research limitations/implicationsWhile there are solid theoretical reasons for the paper's findings, these data do not allow us to test all of the mechanisms involved. In addition, our outcome measure relies on employees' self-reports of how their hourly productivity changed when working at home and is not based on a direct measure of changes to output per hour. However, surveys of employers also suggest that, on average, productivity has not been reduced by the pandemic-induced surge in homeworking.Social implicationsThis paper argues that a higher level of homeworking is here to stay. Nine out of ten employees who worked at home during the pandemic said that they would like to continue working at home when they did not have to. Furthermore, those keenest to continue working at home were the most productive, hence providing a business case for a sustained increase in the prevalence of homeworking after the pandemic has passed. Nevertheless, the experience of homeworking varies with those with higher domestic commitments reporting significantly lower levels of productivity.Originality/valueThere is an urgent need to investigate what effect enforced, as opposed to voluntary, homeworking has had on employee productivity. In addition, in order to decide whether continued homeworking should be encouraged or discouraged, policymakers and employers need to know what effect continuing with these arrangements is likely to have on employee productivity. This paper answers these questions using robust survey data collected in the UK throughout 2020, complemented by evidence taken from a variety of employer surveys.

Third sector partnerships for older people: insights from live at home schemes in the UK

2018 ◽  
Vol 22 (3) ◽  
pp. 148-153 ◽  
Author(s):  
Olumide Adisa
Keyword(s):  
Older People ◽  
Online Survey ◽  
Third Sector ◽  
Later Life ◽  
Evidence Base ◽  
Content Type ◽  
Health And Social Care ◽  
Wide Range ◽  
The Uk ◽  
At Home

Purpose While there is a rich literature on the role of partnerships between statutory agencies and third sector organisations for public service delivery in health and social care, the evidence base on, partnerships between community-based groups and charities for older people in the UK is lacking. Drawing on quantitative and qualitative data, the purpose of this paper is to examines partnerships within 46 live at home (LAH) schemes. These schemes were specifically designed to tackle isolation and promote independence and wellbeing by providing a wide range of activities, based on the needs of its members. Design/methodology/approach This study is based on an online survey of 46 LAH schemes and face-to-face interviews with seven scheme managers to capture data on the various partnership initiatives within the LAH schemes. Findings Third sector partnerships for older people varied by type – formal, semi-formal and informal. In addition, third sector partnership working fosters the achievement of clear outcomes for older people who LAH and could be a mechanism for building social capital in communities. The study also identified barriers to developing third sector partnerships within this context. Mapping existing partnerships in LAH schemes were considered to be useful in engaging with partners. LAH scheme managers were better able to identify partnerships that could be deepened and broadened, depending on the desired outcomes. Originality/value To the author’s knowledge, there are few studies on third sector partnership working in LAH schemes for older people. According to Age UK, there are 1.2m chronically lonely older people in the UK. Over half of all people aged 75 and over live alone (ONS, 2015). Loneliness and social isolation in later life are considered to be two of the largest health concerns we face. Scaling up these third sector partnerships may offer a credible way to shore up support for older people who live alone or want to live at home.

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 COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions

2021 ◽  
Author(s):  
Yincent Tse ◽  
Anne-Sophie E. Darlington ◽  
Kay Tyerman ◽  
Dean Wallace ◽  
Tanya Pankhurst ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Relationships ◽  
Information Needs ◽  
Online Survey ◽  
Psychological Impact ◽  
Support Needs ◽  
The Public ◽  
Children And Young Adults ◽  
Socially Isolated ◽  
At Home

Abstract Background During the initial COVID-19 pandemic, young United Kingdom (UK) kidney patients underwent lockdown and those with increased vulnerabilities socially isolated or ‘shielded’ at home. The experiences, information needs, decision-making and support needs of children and young adult (CYA) patients or their parents during this period is not well known. Methods A UK-wide online survey co-produced with patients was conducted in May 2020 amongst CYA aged 12–30, or parents of children aged < 18 years with any long-term kidney condition. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted. Results One-hundred and eighteen CYA (median age 21) and 197 parents of children (median age 10) responded. Predominant concerns from CYA were heightened vigilance about viral (68%) and kidney symptoms (77%) and detrimental impact on education or work opportunities (70%). Parents feared the virus more than CYA (71% vs. 40%), and had concerns that their child would catch the virus from them (64%) and would have an adverse impact on other children at home (65%). CYA thematic analysis revealed strong belief of becoming seriously ill if they contracted COVID-19; lost educational opportunities, socialisation and career development; and frustration with the public for not following social distancing rules. Positive outcomes included improved family relationships and community cohesion. Only a minority (14–21% CYA and 20–31% parents, merged questions) desired more support. Subgroup analysis identified greater negative psychological impact in the shielded group. Conclusions This survey demonstrates substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making. Graphical abstract

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.

The Stigma of Suicide Scale

Crisis ◽  
2013 ◽  
Vol 34 (1) ◽  
pp. 13-21 ◽  
Author(s):  
Philip J. Batterham ◽  
Alison L. Calear ◽  
Helen Christensen
Keyword(s):  
Construct Validity ◽  
Psychometric Properties ◽  
Factor Structure ◽  
Internal Consistency ◽  
Concurrent Validity ◽  
Online Survey ◽  
National University ◽  
Stigmatizing Attitudes ◽  
High Internal Consistency ◽  
At Home

Background: There are presently no validated scales to adequately measure the stigma of suicide in the community. The Stigma of Suicide Scale (SOSS) is a new scale containing 58 descriptors of a “typical” person who completes suicide. Aims: To validate the SOSS as a tool for assessing stigma toward suicide, to examine the scale’s factor structure, and to assess correlates of stigmatizing attitudes. Method: In March 2010, 676 staff and students at the Australian National University completed the scale in an online survey. The construct validity of the SOSS was assessed by comparing its factors with factors extracted from the Suicide Opinion Questionnaire (SOQ). Results: Three factors were identified: stigma, isolation/depression, and glorification/normalization. Each factor had high internal consistency and strong concurrent validity with the Suicide Opinion Questionnaire. More than 25% of respondents agreed that people who suicided were “weak,” “reckless,” or “selfish.” Respondents who were female, who had a psychology degree, or who spoke only English at home were less stigmatizing. A 16-item version of the scale also demonstrated robust psychometric properties. Conclusions: The SOSS is the first attitudes scale designed to directly measure the stigma of suicide in the community. Results suggest that psychoeducation may successfully reduce stigma.

Examining User Perception and Usage of Voice Search

2020 ◽  
Vol 5 (1) ◽  
pp. 40-47
Author(s):  
Ning Sa ◽  
Xiaojun (Jenny) Yuan
Keyword(s):  
Success Rate ◽  
Mobile Devices ◽  
Online Survey ◽  
Search Behavior ◽  
Mobile Technologies ◽  
User Perception ◽  
Daily Lives ◽  
Survey Results ◽  
Search Systems

AbstractWith the development of mobile technologies, voice search is becoming increasingly important in our daily lives. By investigating the general usage of voice search and user perception about voice search systems, this research aims to understand users’ voice search behavior. We are particularly interested in how users perform voice search, their topics of interest, and their preference toward voice search. We elicit users’ opinions by asking them to fill out an online survey. Results indicated that participants liked voice search because it was convenient. However, voice search was used much less frequently than keyboard search. The success rate of voice search was low, and the participants usually gave up voice search or switched to keyboard search. They tended to perform voice search when they were driving or walking. Moreover, the participants mainly used voice search for simple tasks on mobile devices. The main reasons why participants disliked voice search are attributed to the system mistakes and the fact that they were unable to modify the queries.

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.

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