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 The Information Needs of Adolescent Idiopathic Scoliosis Patients and Their Parents in the UK: An Online Survey

Healthcare ◽  
2019 ◽  
Vol 7 (2) ◽  
pp. 78
Author(s):  
Shaun Wellburn ◽  
Paul van Schaik ◽  
Josette Bettany-Saltikov
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Adolescent Idiopathic Scoliosis ◽  
Idiopathic Scoliosis ◽  
Information Needs ◽  
Online Survey ◽  
Support Needs ◽  
The Mean ◽  
Information Materials ◽  
The Uk

Patients’ involvement in decision-making regarding their own health care is considered to be of great importance. However, their information needs are frequently reported to be unfulfilled. Few studies have investigated the knowledge, information and support needs of adolescent idiopathic scoliosis (AIS) patients and their families. Furthermore, previous studies have predominantly focussed on information needs relating to surgery. No previous studies have been conducted to specifically identify the information needs of AIS patients and their families. An online survey consisting of 18 questions was conducted to investigate the information needs of AIS patients and their families. Completed surveys of 83 participants (76 female, 7 male) from 44 differing postcode areas were analysed. The mean age of the respondents with scoliosis was 13.3 years (SD = 1.9; range = 10–18). Participants identified with feelings including worry, anxiety and being upset. The main information needs related to the cause and prognosis of the condition. Where participants had received information, there were contrasting views of the quality. The findings of this study stress the necessity for information materials to be accurate and applicable to each individual patient. Furthermore, the information should be presented in such a way as to be easily understandable, yet contain the necessary information required by AIS patients and their families.

scholarly journals A consumer perspective of advertising by attorneys

1991 ◽  
Vol 17 (1) ◽  
Author(s):  
C. Boshoff
Keyword(s):  
South Africa ◽  
Decision Making ◽  
Information Needs ◽  
Communication Strategies ◽  
Legal Services ◽  
Marketing Communication ◽  
Advertising Agencies ◽  
The Public ◽  
Consumer Perspective ◽  
First Time

Attorneys in South Africa may soon be permitted to advertise their services for the first time. This recommendation put forward by the Association of Law Societies, though still to be ratified by the four provincial law societies, has come amid increasing competition between attorneys and non- professionals. The marketing fraternity is, however, uncertain as to how members of the public are likely to react to legal services advertising. This study attempts to provide some tentative guidelines for decision-making on advertising by attorneys. Interested parties like attorneys, marketing consultants, and advertising agencies could use the researched information to structure marketing communication strategies which will not transgress the ethical code of the attorneys' profession, but which will satisfy the information needs of consumers. The study reports the findings of a survey conducted among 1 000 members of the public. Indications are that consumers not only think that advertising should be permitted, but also that it will benefit both themselves and the legal profession. Opsomming Prokureurs mag moontlik binnekort toegelaat word om hul dienste te adverteer. Die aanbeveling van die Vereniging van Prokureursordes, wat nog deur die vier provinsiale wetsgenootskappe bekragtig moet word, is geneem as gevolg van toenemende mededinging tussen prokureurs en nie-professionele praktisyns. Bemarkingsdeskundiges is egter onseker oor wat die publiek se reaksie sal wees. Die studie poog om enkele tentatiewe riglyne voor te stel vir bemarkingskommunikasiestrategieë wat nie die regsprofessie se etiese kode sal oortree nie, maar tog voldoende inligting aan verbruikers sal beskikbaar stel. Die bevindinge van 'n opname onder 1 000 lede van die publiek dui daarop dat reklame nie alleen verwelkom sal word nie, maar dat dit moontlik tot voordeel van sowel die publiek as die regsprofessie sal strek.

Willingness of the Public to Share Geolocation Information in a U.S. Census Bureau Survey

2018 ◽  
Vol 37 (4) ◽  
pp. 568-588 ◽  
Author(s):  
Erica Olmsted-Hawala ◽  
Elizabeth Nichols
Keyword(s):  
Mobile Device ◽  
Online Survey ◽  
Census Bureau ◽  
Location Information ◽  
The Public ◽  
Study Condition ◽  
Location Data ◽  
Home Address ◽  
The U.S ◽  
At Home

In 2016, the U.S. Census Bureau conducted a split-panel experiment to explore the public’s willingness to share geolocation information within a survey. A sample of participants from a nonprobability panel were invited to take part in an online survey using their mobile device. Within the survey, one question asked for their address and then the survey requested permission to access their geolocation information. Depending on the study condition, the survey varied how the geolocation request was made and where in the survey the address and geolocation requests appeared. Results showed that the treatment that explicitly asked for permission in addition to the device’s default permission request increased female respondents’ sharing of that data but not male respondents’ sharing. Results also showed that placing the address and geolocation request toward the end of the survey significantly increased the willingness of all respondents to share their location information. Results indicated that respondents with more education and nonminority respondents were more willing to share their location data, but willingness to share location data did not depend on age of the respondent. Assuming that the respondents reported truthfully that they were at home while taking the survey and entered their home address, we found the geolocation data to be accurate to the correct block a little more than 50% of the time.

scholarly journals 323 - I’d prefer to stay at home but I don’t have a choice’: Irish social workers’ experiences of decision-making in care planning with older people with dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 81-81
Author(s):  
John P. Brennan
Keyword(s):  
Decision Making ◽  
Social Justice ◽  
Older People ◽  
Social Workers ◽  
Family Relationships ◽  
Reduction Process ◽  
Decision Making Process ◽  
People With Dementia ◽  
Health And Social Care ◽  
At Home

This paper is based on a collaborative research study undertaken by the Irish Association of Social Workers, Age Action Ireland, The Alzheimer Society of Ireland and the School of Social policy, Social Work and Social Justice, University College Dublin. The study explored the experiences and views of social workers working with older people, including people with dementia. The purpose of the study was to investigate how the health and social care system in Ireland was responding to the care needs, required supports and preferences of older people. This paper will mainly focus on reported experiences related to older people with dementia in decision-making about their care.Data collection included a mixed method approach, that is, (i) an on-line survey of social workers across Ireland reporting on their open caseload over a period of one month (N = 38)) and (ii) semi-structured telephone interviews with social workers (N = 21).The Quantitative data was analysed using SPSS statistical software to produce descriptive and bivariate results. For the qualitative data an iterative data reduction process was used.Findings echoed that of other Irish research demonstrating (i) that the preference of older people is to remain living at home and receiving care in this setting as needed, and (ii) that this preference is not being realized. The study further highlighted variations in participation levels of people with dementia in the decision-making process, the barriers to participation and the place of family relationships in the decision-making process. The study made recommendations as to how to address these issues. The findings will also be considered within the context of social justice for older people.

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.

MULTI-TENANTED RESIDENTS IN LOW INCOME COMMUNITIES IN LAGOS: THE RECEPTION AND PRECAUTIONS THROUGH MUSIC DURING COVID 19 ERA.

2021 ◽  
Author(s):  
Florence Ewomazino Nweke ◽  
Gbenga Nubi Timothy ◽  
Basirat Oyalowo
Keyword(s):  
Low Income ◽  
Online Survey ◽  
Preventive Measures ◽  
Group Discussion ◽  
Significant Loss ◽  
Radio Stations ◽  
The Public ◽  
Initial Stage ◽  
Children And Young Adults ◽  
The Impact

Music generally served as a crucial tool of enlightenment, especially in awakening consciousness on COVID-19 preventive measures. The research was motivated by concern about the capacity of residents of multi-tenanted houses to adhere to these instructions via music presented in the form of jingles to an environment that lacks basic amenities and is overcrowding. The remarkable silence on coping strategies for these people emanating from both the state and the federal government and the Nigerian Centre for Disease Control (NCDC) directives on COVID-19 protection at the initial stage of the COVID-19 pandemic lockdown necessitated the use of music. Many residents of multi-tenanted housing in Lagos continue to bear the impact of the six-week lockdown of 2020. Through an online survey as well as a virtual focus group discussion with selected members of the public and engagement through radio call-in programs on selected radio stations, the study concludes that the lockdown allowed people some quality time with their family. Many families experienced a significant loss of income, increased business instability, emotional stress, increased expenditure on food, and restiveness by homebound children and young adults. The role music played during the Ebola epidemic breakout was mentioned by callers during the call-in programs on radio, adding the influential role of music in enlightening the public on preventive measures. Such measures were imbibed by some of these residents who listened to musical jingles way back.

scholarly journals Psychological Impact and Compliance with Staying at Home of the Public to COVID-19 Outbreak during Chinese Spring Festival

2022 ◽  
Vol 19 (2) ◽  
pp. 916
Author(s):  
Huiwen Xu ◽  
Lin Liu ◽  
Luming Zhao ◽  
En Takashi ◽  
Akio Kitayama ◽  
...  
Keyword(s):  
Chinese Spring ◽  
Online Survey ◽  
Psychological Impact ◽  
Female Gender ◽  
Vulnerable Groups ◽  
Start Time ◽  
Validated Questionnaire ◽  
Spring Festival ◽  
Staying At Home ◽  
At Home

In December 2019, COVID-19 was reported in Wuhan, China. Most of the studies related to the psychological impact and compliance with staying at home due to COVID-19 focused on ten days or one month after the initial “stay-at-home” phase of the COVID-19 pandemic. The early psychological impact and behavior change to COVID-19 during the Chinese Spring Festival (the start time for recommendations to stay at home) is uncertain. In this study, people from 23 provinces in China were recruited to participate in an online survey, using Credamo. Psychological impact and compliance with staying at home were evaluated by a self-designed and validated questionnaire. The results indicated that anxiety was the most often reported feeling (mean: 3.69), followed by sadness (mean: 3.63). Participants employed in foreign-owned companies were most likely to express anxiety and sadness. Overall, 61.8% of participants reported hardly going out, whereas 2.4% said they frequently went out during the initial “stay-at-home” phase of the COVID-19 pandemic. Participants with higher levels of anxiety and sadness were most likely to stay at home against the spread of COVID-19, as were female gender. This survey is an important study of the first reaction to staying at home during the initial “stay-at-home” phase coinciding with Chinese Spring Festival. Our findings identified factors associated with higher level of psychological impact and better compliance with staying at home recommendations during Chinese Spring Festival. The findings can be used to formulate precaution interventions to improve the mental health of vulnerable groups and high uptake of policy during the COVID-19 epidemic.

scholarly journals Contact tracing during the COVID-19 outbreak: a protocol for enabling rapid learning from experiences and exploring the psychological impact on contact tracers

2021 ◽  
Vol 4 ◽  
pp. 33
Author(s):  
Róisín O'Donovan ◽  
Claire Buckley ◽  
Philip Crowley ◽  
Hugh Fulham-McQuillan ◽  
Brynne Gilmore ◽  
...  
Keyword(s):  
Online Survey ◽  
Psychological Impact ◽  
Dynamic Environment ◽  
Well Being ◽  
Contact Tracing ◽  
Time Data ◽  
Health Service Executive ◽  
Mixed Methods Approach ◽  
The Public ◽  
Intensive Training

Background: Given the unprecedented nature of the COVID-19 pandemic, the Irish health system required the redeployment of public sector staff and the recruitment of dedicated contact tracing staff in the effort to contain the spread of the virus. Contact tracing is crucial for effective disease control and is normally carried out by public health teams. Contact tracing staff are provided with rapid intensive training but are operating in a dynamic environment where processes and advice are adapting continuously. Real-time data is essential to inform strategy, coordinate interconnected processes, and respond to needs. Given that many contact tracers have been newly recruited or redeployed, they may not have significant experience in healthcare and may experience difficulties in managing the anxieties and emotional distress of the public. Aim: (i) identify emerging needs and issues and feed this information back to the Health Service Executive for updates to the COVID-19 Contact Management Programme (CMP); (ii) understand the psychological impact on contact tracers and inform the development of appropriate supports. Methods: We will use a mixed-methods approach. A brief online survey will be administered at up to three time points during 2021 to measure emotional exhaustion, anxiety, general health, and stress of contact tracing staff, identify tracing systems or processes issues, as well as issues of concern and confusion among the public. Interviews will also be conducted with a subset of participants to achieve a more in-depth understanding of these experiences. Observations may be conducted in contact tracing centres to document processes, practices, and explore any local contextual issues. Impact: Regular briefs arising from this research with data, analysis, and recommendations will aim to support the work of the CMP to identify problems and implement solutions. We will deliver regular feedback on systems issues; challenges; and the psychological well-being of contact tracing staff.

scholarly journals Contact tracing during the COVID-19 outbreak: a protocol for enabling rapid learning from experiences and exploring the psychological impact on contact tracers

2021 ◽  
Vol 4 ◽  
pp. 33
Author(s):  
Róisín O'Donovan ◽  
Claire Buckley ◽  
Philip Crowley ◽  
Hugh Fulham-McQuillan ◽  
Brynne Gilmore ◽  
...  
Keyword(s):  
Online Survey ◽  
Psychological Impact ◽  
Dynamic Environment ◽  
Well Being ◽  
Contact Tracing ◽  
Time Data ◽  
Health Service Executive ◽  
Mixed Methods Approach ◽  
The Public ◽  
Intensive Training

Background: Given the unprecedented nature of the COVID-19 pandemic, the Irish health system required the redeployment of public sector staff and the recruitment of dedicated contact tracing staff in the effort to contain the spread of the virus. Contact tracing is crucial for effective disease control and is normally carried out by public health teams. Contact tracing staff are provided with rapid intensive training but are operating in a dynamic environment where processes and advice are adapting continuously. Real-time data is essential to inform strategy, coordinate interconnected processes, and respond to needs. Given that many contact tracers have been newly recruited or redeployed, they may not have significant experience in healthcare and may experience difficulties in managing the anxieties and emotional distress of the public. Aim: (i) identify emerging needs and issues and feed this information back to the Health Service Executive for updates to the COVID-19 Contact Management Programme (CMP); (ii) understand the psychological impact on contact tracers and inform the development of appropriate supports. Methods: We will use a mixed-methods approach. A brief online survey will be administered at up to three time points during 2021 to measure emotional exhaustion, anxiety, general health, and stress of contact tracing staff, identify tracing systems or processes issues, as well as issues of concern and confusion among the public. Interviews will also be conducted with a subset of participants to achieve a more in-depth understanding of these experiences. Observations may be conducted in contact tracing centres to document processes, practices, and explore any local contextual issues. Impact: Regular briefs arising from this research with data, analysis, and recommendations will aim to support the work of the CMP to identify problems and implement solutions. We will deliver regular feedback on systems issues; challenges; and the psychological well-being of contact tracing staff.

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