scholarly journals Parent priorities for research and communication concerning childhood outcomes following preterm birth

2021 ◽  
Vol 6 ◽  
pp. 151
Author(s):  
Lorna Ginnell ◽  
James P. Boardman ◽  
Rebecca M. Reynolds ◽  
Sue Fletcher-Watson
Keyword(s):  
Online Survey ◽  
Rating Scale ◽  
Descriptive Analysis ◽  
Early Years ◽  
Research Centre ◽  
Free Text ◽  
Framework Analysis ◽  
Effective Interventions ◽  
Health Visitors ◽  
Educational Professionals

Background: Children born preterm (before 37 weeks of gestation) are at risk for several adverse childhood outcomes. Parent priorities for research into these outcomes, and preferences for receiving information about these risks, have not previously been established. Here we report the results of an online survey designed to understand parent priorities for research and their preferences for receiving information about childhood outcomes. Methods: An online survey was circulated through social media and was completed by 148 parents of preterm children between the ages of 0 and 12 years from around the United Kingdom (UK). Survey questions were in the form of rating scale, multiple choice, ranking or open-ended free text questions. Descriptive analysis was applied to the quantitative data. Illustrative quotes were extracted from the qualitative free text data and a subset of these questions were analysed using framework analysis. Results: Parent priorities for research centre around identification of factors which can protect against or improve adverse cognitive or developmental outcomes. The majority of parents would prefer for communication to begin within the first year of the child’s life. Parents reported a knowledge gap among health visitors, early years educators and schools. Conclusions: In order to align with parent preferences, research should prioritise identification of protective factors and the development of effective interventions to improve outcomes. Training for health visitors and educational professionals could improve the experiences of families and children.

scholarly journals Parent priorities for research and communication concerning childhood outcomes following preterm birth

2021 ◽  
Vol 6 ◽  
pp. 151
Author(s):  
Lorna Ginnell ◽  
James P. Boardman ◽  
Rebecca M. Reynolds ◽  
Sue Fletcher-Watson
Keyword(s):  
Online Survey ◽  
Rating Scale ◽  
Descriptive Analysis ◽  
Early Years ◽  
Research Centre ◽  
Free Text ◽  
Framework Analysis ◽  
Effective Interventions ◽  
Health Visitors ◽  
Educational Professionals

Background: Children born preterm (before 37 weeks of gestation) are at risk for several adverse childhood outcomes. Parent priorities for research into these outcomes, and preferences for receiving information about these risks, have not previously been established. Here we report the results of an online survey designed to understand parent priorities for research and their preferences for receiving information about childhood outcomes. Methods: An online survey was circulated through social media and was completed by 148 parents of preterm children between the ages of 0 and 12 years from around the United Kingdom (UK). Survey questions were in the form of rating scale, multiple choice, ranking or open-ended free text questions. Descriptive analysis was applied to the quantitative data. Illustrative quotes were extracted from the qualitative free text data and a subset of these questions were analysed using framework analysis. Results: Parent priorities for research centre around identification of factors which can protect against or improve adverse cognitive or developmental outcomes. The majority of parents would prefer for communication to begin within the first year of the child’s life. Parents reported a knowledge gap among health visitors, early years educators and schools. Conclusions: In order to align with parent preferences, research should prioritise identification of protective factors and the development of effective interventions to improve outcomes. Training for health visitors and educational professionals could improve the experiences of families and children.

scholarly journals Parent priorities for research and communication concerning childhood outcomes following preterm birth.

2021 ◽  
Author(s):  
Lorna Ginnell ◽  
James P Boardman ◽  
Rebecca Reynolds ◽  
Sue Fletcher-Watson
Keyword(s):  
Social Media ◽  
Preterm Birth ◽  
Online Survey ◽  
Early Years ◽  
Research Centre ◽  
First Year ◽  
Preterm Children ◽  
Health Visitors ◽  
Adverse Childhood ◽  
The Uk

Children born preterm (before 37 weeks of gestation) are at risk for several adverse childhood outcomes. Parent priorities for research into these outcomes, and preferences for receiving information about these risks, have not previously been established. 149 parents of preterm children between the ages of 0 and 12 years from around the UK completed an online survey, circulated through social media. Parent priorities for research centre around prevention of difficulties and development of interventions. The majority of parents would prefer for communication to begin within the first year of the child’s life. Parents reported a knowledge gap among health visitors, early years educators and schools. Training for these professionals could improve the experiences of families and children.

scholarly journals Patients’ Ability to Review Electronic Health Record Information to Identify Potential Errors: A Pilot Qualitative Study (Preprint)

2020 ◽  
Author(s):  
Lisa Freise ◽  
Ana Luisa Neves ◽  
Kelsey Flott ◽  
Paul Harrison ◽  
John Kelly ◽  
...  
Keyword(s):  
Information Exchange ◽  
Online Survey ◽  
Personal Health Information ◽  
Free Text ◽  
Patient Portal ◽  
Medical Terminology ◽  
Framework Analysis ◽  
User Friendliness ◽  
Cross Sectional ◽  
Electronic Health

BACKGROUND Sharing personal health information positively impacts quality of care across several domains, and particularly safety and patient-centeredness. Patients when reading their electronic health records (EHRs) may identify and flag up inconsistencies, leading to improved information quality and patient safety. However, in order to identify potential errors, patients need to be able to understand the information contained in their electronic records. OBJECTIVE This study assesses patients’ ability to identify errors present in their EHRs. Specifically, it evaluates the degree to which patients comprehend the information in their EHRs, what barriers exist to their understanding, and what, if any, errors patients can identify when given access to their EHRs. METHODS A cross-sectional online survey was undertaken between March 2017 and September 2017. A total of 682 registered users of the Care Information Exchange patient portal, with at least one access during the time of the study, were invited to complete the survey containing both structured (multiple choice) and unstructured (free-text) questions. The survey contained questions on patients’ perceived ability to understand their EHR information and therefore to identify errors. Free-text questions allowed respondents to expand on the reasoning behind their structured responses and provide more detail about their perceptions of EHRs and identifying errors within them. Qualitative data was systematically reviewed by two independent researchers using the framework analysis method, in order to identify emerging themes. RESULTS A total of 160 participants completed the survey (response rate=23.5%). The majority of participants (68.7%) reported they understood the information. The main barriers identified were information-related (medical terminology and knowledge, and interpretation of test results) and technology-related (user-friendliness of the portal, information display). Participants identified inconsistencies relating to incomplete and incorrect information in 14% of their records. CONCLUSIONS While the majority of patients reportedly understand the information contained within their EHRs, both technology and information-based barriers persist. There is a potential to improve system design to better support opportunities for patients to identify errors. This is with the aim of improving the accuracy, quality and timeliness of the information held in the EHRs and also a mechanism to further engage patients in their heath and healthcare. CLINICALTRIAL Not applicable

‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research

Autism ◽  
2020 ◽  
pp. 136236132095169
Author(s):  
Jacquiline den Houting ◽  
Julianne Higgins ◽  
Kathy Isaacs ◽  
Joanne Mahony ◽  
Elizabeth Pellicano
Keyword(s):  
Community Engagement ◽  
Participatory Research ◽  
Online Survey ◽  
Rating Scales ◽  
Research Centre ◽  
Free Text ◽  
Community Members ◽  
Community Partners ◽  
Training Support ◽  
Autism Research

Despite calls for increased community engagement in autism research, the published evidence base suggests that participatory autism research remains rare. This study examined the extent and nature of community engagement in Australian research projects commissioned by the Autism CRC. Data were gathered using an online survey, comprising quantitative scale items and qualitative free-text responses, which was completed by 64 academic partners and 15 community partners. Quantitative findings indicated that autism research stakeholders in Australia are largely supportive of community engagement in research and have had positive experiences of participatory research. These findings were not wholly corroborated by the qualitative findings, however, which suggested that participants lacked understanding of participatory research, and held attitudes that may hinder the conduct of successful participatory research. Systemic issues within research settings were also perceived to impede community engagement in research. Both academic and community partners would benefit from better understanding of participatory research approaches, paired with practical and epistemological shifts at the systemic level, to ensure that future community engagement in autism research is respectful, equitable and beneficial to all stakeholders. Lay abstract Participatory research means working together ( engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants’ own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well.

Quantifying empathy levels among UK undergraduate medical students: an online survey

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711293
Author(s):  
Sarah Garnett ◽  
Hajira Dambha-Miller ◽  
Beth Stuart
Keyword(s):  
Medical Students ◽  
Health Outcomes ◽  
Medical School ◽  
Curriculum Design ◽  
Online Survey ◽  
Mental Wellbeing ◽  
Reactivity Index ◽  
Free Text ◽  
Undergraduate Medical Students ◽  
Cross Sectional

BackgroundEmpathy is a key health care concept and refers to care that incorporates understanding of patient perspective’s, shared decision making, and consideration of the broader context in which illness is experience. Evidence suggests experiences of doctor empathy correlate with improved health outcomes and patient satisfaction. It has also been linked to job satisfaction, and mental wellbeing for doctors. To date, there is a paucity of evidence on empathy levels among medical students. This is critical to understand given that it is a key point at which perceptions and practices of empathy in the longer term might be formed.AimTo quantify the level of empathy among UK undergraduate medical studentsMethodAn anonymised cross-sectional online survey was distributed to medical students across three universities. The previously validated Davis’s Interpersonal Reactivity Index was used to quantify empathy. The survey also collected information on age, sex, ethnicity, year of medical school training and included a free-text box for ‘any other comments’.ResultsData analysis is currently underway with high response rates. Mean empathy scores by age, sex, year of study and ethnic group are presented. A correlation analysis will examine associations between age and year of study, and mean empathy sores.ConclusionThese data will help to provide a better understanding of empathy levels to inform the provision of future empathy training and medical school curriculum design. Given previous evidence linking experiences of empathy to better health outcomes, the findings may also be significant to future patient care

scholarly journals Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives’ experiences during the COVID-19 pandemic

2021 ◽  
pp. 026921632110198
Author(s):  
Catriona R Mayland ◽  
Rosemary Hughes ◽  
Steven Lane ◽  
Tamsin McGlinchey ◽  
Warren Donnellan ◽  
...  
Keyword(s):  
Public Health ◽  
Family Support ◽  
Online Survey ◽  
Free Text ◽  
Professional Networks ◽  
Dying Patients ◽  
The Face ◽  
Individualised Care ◽  
The Impact ◽  
Informative Communication

Background: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. Aim: To explore bereaved relatives’ experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. Design: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June–September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Participants: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. Results: Respondents ( n = 278, mean 53.4 years) tended to be female ( n = 216, 78%); over half were ‘son/daughter’ (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their ‘usual place of care’ ( n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of ‘not knowing’; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. Conclusion: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

scholarly journals Hospital Nursing Staff Perceptions of Resources Provided by Their Organizations During the COVID-19 Pandemic

2021 ◽  
pp. 216507992098754
Author(s):  
Hyeonmi Cho ◽  
Knar Sagherian ◽  
Linsey M. Steege
Keyword(s):  
Nursing Staff ◽  
Online Survey ◽  
Community Support ◽  
Well Being ◽  
The United States ◽  
Free Text ◽  
Staff Perceptions ◽  
Survey Question ◽  
Hospital Nursing ◽  
Hospital Resources

Background: The coronavirus disease 2019 (COVID-19) pandemic has profoundly impacted the health and psychological well-being of hospital nursing staff. While additional support is needed to better cope with increased job stressors, little is known about what types of hospital resources have been provided and how nursing staff perceive them. This study addressed this gap by describing nursing staff perceptions of resources provided by hospitals during the COVID-19 pandemic in the United States. Methods: Registered nurses and nursing assistants who were working in hospitals during the pandemic were recruited to an online survey via social media posts and emails between May and June 2020. A total of 360 free-text responses to an open-ended survey question were analyzed using content analysis. Results: Over half of participants reported being provided with hospital resources. “Basic needs” resources that included food on-site, groceries, and childcare support were the most frequently reported compared with four other types of resources (personal health and safe practice, financial support, managerial support, communication). Four themes emerged related to staff perceptions of support: community support, unequal benefits, decreasing resources, and insufficient personal protective equipment. Conclusion: Our findings can assist organizational leaders in the planning and allocation of different types of resources that are meaningful to nursing staff and thus ensure sustainability, optimal performance, and worker well-being during crises.

scholarly journals 764 Human Factors in Operative Theatres During the Covid-19 Pandemic: A Cross-sectional Analysis of Operating Theatre Staff Experiences in a Regional Centre

2021 ◽  
Vol 108 (Supplement_2) ◽  
Author(s):  
L E Murchison ◽  
R Anbarasan ◽  
A Mathur ◽  
M Kulkarni
Keyword(s):  
Human Factors ◽  
Online Survey ◽  
Situational Awareness ◽  
Negative Impact ◽  
High Stress ◽  
Operating Theatre ◽  
Free Text ◽  
Cross Sectional ◽  
Chi Squared ◽  
Theatre Staff

Abstract Introduction In the already high-risk, high-stress environment of the operating theatre, operating during Covid-19 has brought its own unique challenges. Communication, teamwork and anxiety related new operating practices secondary to Covid-19 are hypothesised to have a negative impact on patient care. Method We conducted a single-centre online survey of operating theatre staff from 22nd June–6th July 2020. Respondents completed 18 human factors questions related to COVID-19 precautions including communication, teamwork, situational awareness, decision making, stress, fatigue, work environment and organisational culture. Questions consisted of yes/no responses, multiple choice and Likert items. Kruskall-Wallis tests, Chi-Squared, Mann Whitney U tests, Spearman’s correlation coefficient, lambda and Cramer’s V tests were used. Free-text responses were also reviewed. Results 116 theatre staff responded. Visual (90.5%), hearing/ understanding (96.6%) difficulties, feeling faint/lightheaded (66.4%) and stress (47.8%) were reported. Decreased situational awareness was reported by 71.5% and correlated with visors (r = 0.27 and p = 0.03) and FFP2/3 mask usage (r = 0.29 and p = 0.01). Reduced efficiency of theatre teams was reported by 75% of respondents and 21.5% felt patient safety was at greater risk due to Covid-19 precautions in theatre. Conclusions Organisational adjustments are required, and research focused on development of fit-for-purpose personal protective equipment (PPE).

scholarly journals Mental Health, Information and Being Connected: Qualitative Experiences of Social Media Use during the COVID-19 Pandemic from a Trans-National Sample

Healthcare ◽  
2021 ◽  
Vol 9 (6) ◽  
pp. 735
Author(s):  
Schoultz Mariyana ◽  
Leung Janni ◽  
Bonsaksen Tore ◽  
Ruffolo Mary ◽  
Thygesen Hilde ◽  
...  
Keyword(s):  
Mental Health ◽  
Social Media ◽  
Health Information ◽  
Online Survey ◽  
Negative Impact ◽  
National Study ◽  
Free Text ◽  
Cross Sectional ◽  
Mental Health Information ◽  
The Uk

Background: Due to the COVID-19 pandemic and the strict national policies regarding social distancing behavior in Europe, America and Australia, people became reliant on social media as a means for gathering information and as a tool for staying connected to family, friends and work. This is the first trans-national study exploring the qualitative experiences and challenges of using social media while in lockdown or shelter-in-place during the current pandemic. Methods: This study was part of a wider cross-sectional online survey conducted in Norway, the UK, USA and Australia during April/May 2020. The manuscript reports on the qualitative free-text component of the study asking about the challenges of social media users during the COVID-19 pandemic in the UK, USA and Australia. A total of 1991 responses were included in the analysis. Thematic analysis was conducted independently by two researchers. Results: Three overarching themes identified were: Emotional/Mental Health, Information and Being Connected. Participants experienced that using social media during the pandemic amplified anxiety, depression, fear, panic, anger, frustration and loneliness. They felt that there was information overload and social media was full of misleading or polarized opinions which were difficult to switch off. Nonetheless, participants also thought that there was an urge for connection and learning, which was positive and stressful at the same time. Conclusion: Using social media while in a shelter-in-place or lockdown could have a negative impact on the emotional and mental health of some of the population. To support policy and practice in strengthening mental health care in the community, social media could be used to deliver practical advice on coping and stress management. Communication with the public should be strengthened by unambiguous and clear messages and clear communication pathways. We should be looking at alternative ways of staying connected.

scholarly journals The Influence of Human–Animal Interactions on Mental and Physical Health during the First COVID-19 Lockdown Phase in the U.K.: A Qualitative Exploration

2021 ◽  
Vol 18 (3) ◽  
pp. 976 ◽  
Author(s):  
Emily Shoesmith ◽  
Lion Shahab ◽  
Dimitra Kale ◽  
Daniel S. Mills ◽  
Catherine Reeve ◽  
...  
Keyword(s):  
Mental Health ◽  
Online Survey ◽  
Positive Impact ◽  
Companion Animals ◽  
Free Text ◽  
Physical And Mental Health ◽  
Human Animal ◽  
Human Animal Interaction ◽  
Animal Interaction ◽  
The Impact

The coronavirus disease 2019 (COVID-19) pandemic presents an opportunity to explore the role of animals as sources of emotional and physical support during a period when most of the population is experiencing social and environmental challenges. We investigated how companion animal owners perceived the influence of human–animal interaction on their physical and mental health during the first COVID-19 lockdown phase in the U.K., and what concerns they had regarding their animals at this time. We also explored the impact of participants’ interaction with non-companion animals during this phase. A cross-sectional online survey of U.K. residents aged over 18 was conducted between April and June 2020. The final item of the survey invited open-ended free-text responses, allowing participants to describe any experiences and/or perceptions of their human–animal relationships during the COVID-19 lockdown phase. A qualitative thematic analysis of responses was undertaken. Four main themes related to the following aspects of human–animal interactions during the COVID-19 lockdown phase were identified: the positive impact of animal ownership during the COVID-19 lockdown (e.g., amelioration of wellbeing and mental health), concerns relating to animal ownership during the COVID-19 lockdown (e.g., concerns over animals carrying the COVID-19 virus), grief and loss of an animal during the COVID-19 lockdown and the impact of engaging with non-companion animals during the COVID-19 lockdown. The findings complement and extend previous insights into the impact of human–animal interaction with both companion and non-companion animals. They also highlight the challenges of caring for an animal during the lockdown phase and indicate the need to consider the development of further targeted support strategies, such as “day care” for the companion animals of key workers in this context.

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