scholarly journals Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic

2021 ◽  
pp. 026921632110433
Author(s):  
Emily Harrop ◽  
Silvia Goss ◽  
Damian Farnell ◽  
Mirella Longo ◽  
Anthony Byrne ◽  
...  
Keyword(s):  
General Practitioner ◽  
Support Needs ◽  
Free Text ◽  
Bereavement Support ◽  
Text Data ◽  
Face To Face ◽  
The Uk ◽  
High Level ◽  
Levels Of Support ◽  
Access Services

Background: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. Aim: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. Design: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. Setting/participants: 711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations. Results: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% ( n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. Conclusions: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation.

scholarly journals Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic

2021 ◽  
Author(s):  
Emily J Harrop ◽  
Silvia Goss ◽  
Damian JJ Farnell ◽  
Mirella Longo ◽  
Anthony Byrne ◽  
...  
Keyword(s):  
Emotional Support ◽  
Support Needs ◽  
Free Text ◽  
Bereavement Support ◽  
Text Data ◽  
Face To Face ◽  
The Uk ◽  
High Level ◽  
Levels Of Support ◽  
Access Services

Background: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. Aim: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. Design: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. Setting/Participants: 711 adults bereaved in the UK between March-December 2020, recruited via media, social media, national associations and community/charitable organisations. Results: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n=422) or their GP (60%, n=428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n=149)/GP support (52%, n=135). 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help, and not knowing how to access services. 39% (n=279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact, and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. Conclusions: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options, and social/educational initiatives to bolster informal support and ameliorate isolation.

scholarly journals Unsupervised identification of crime problems from police free-text data

Crime Science ◽  
2020 ◽  
Vol 9 (1) ◽  
Author(s):  
Daniel Birks ◽  
Alex Coleman ◽  
David Jackson
Keyword(s):  
Crime Reduction ◽  
Free Text ◽  
Topic Modelling ◽  
Modus Operandi ◽  
Text Data ◽  
Machine Learning Methods ◽  
Major Metropolitan Area ◽  
Operational Decision Making ◽  
The Uk ◽  
Crime Classification

Abstract We present a novel exploratory application of unsupervised machine-learning methods to identify clusters of specific crime problems from unstructured modus operandi free-text data within a single administrative crime classification. To illustrate our proposed approach, we analyse police recorded free-text narrative descriptions of residential burglaries occurring over a two-year period in a major metropolitan area of the UK. Results of our analyses demonstrate that topic modelling algorithms are capable of clustering substantively different burglary problems without prior knowledge of such groupings. Subsequently, we describe a prototype dashboard that allows replication of our analytical workflow and could be applied to support operational decision making in the identification of specific crime problems. This approach to grouping distinct types of offences within existing offence categories, we argue, has the potential to support crime analysts in proactively analysing large volumes of modus operandi free-text data—with the ultimate aims of developing a greater understanding of crime problems and supporting the design of tailored crime reduction interventions.

scholarly journals Diarised Reflections on COVID-19 and Bereavement: Disruptions and Affordances

2021 ◽  
pp. 105413732110440
Author(s):  
Karen West ◽  
Hannah Rumble ◽  
Rachel Shaw ◽  
Ailsa Cameron ◽  
Caity Roleston
Keyword(s):  
Social Networks ◽  
End Of Life ◽  
Emotional Support ◽  
Evidence Base ◽  
Social Expectations ◽  
Bereavement Support ◽  
Face To Face ◽  
The Face ◽  
Positive Valence ◽  
The Uk

COVID-19 lockdown and social distancing measures have restricted funerals and memorial events and have limited the face-to-face social networks that grieving people might normally be able to draw upon for emotional support. However, while there is considerable expert informed speculation about the impacts of grief and “COVID bereavement”, detailed accounts of experiences of bereavement and bereavement support during the pandemic have the potential to enrich and provide nuance and subtlety to the evidence base. This paper draws on diary accounts of bereavement support volunteers in the UK, who have been providing support for the bereaved through these challenging times. These reveal layers of complexity to the experiences of loss, grief and bereavement during these extraordinary times. However, they also point to a number of additional themes that lend a more positive valence to the suspension of normal social expectations and memorial practices associated with the pandemic, which, we argue should be reflected upon for their potential to address the discontents of contemporary governance of end of life and bereavement.

scholarly journals Family refusal of eye tissue donation from potential solid organ donors: a retrospective analysis of summary and free-text data from the UK National Health Service Blood and Transplant Services (NHS-BT) National Referral Centre (1 April 2014 to 31 March 2017)

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e045250
Author(s):  
Mike Bracher ◽  
Banyana C Madi-Segwagwe ◽  
Emma Winstanley ◽  
Helen Gillan ◽  
Tracy Long-Sutehall
Keyword(s):  
National Health Service ◽  
Health Service ◽  
Free Text ◽  
Solid Organ ◽  
Organ Donors ◽  
Text Data ◽  
Data Set ◽  
Uk National Health Service ◽  
The Uk ◽  
Eye Donation

ObjectivesLong-standing undersupply of eye tissue exists both in the UK and globally, and the UK National Health Service Blood and Transplant Service (NHSBT) has called for further research exploring barriers to eye donation. This study aims to: (1) describe reported reasons for non-donation of eye tissue from solid organ donors in the UK between 1 April 2014 and 31 March 2017 and (2) discuss these findings with respect to existing theories relating to non-donation of eyes by family members.DesignSecondary analysis of a national primary data set of recorded reasons for non-donation of eyes from 2790 potential solid organ donors. Data analysis including descriptive statistics and qualitative content analysis of free-text data for 126 recorded cases of family decline of eye donation.SettingNational data set covering solid organ donation (secondary care).Participants2790 potential organ donors were assessed for eye donation eligibility between 1 April 2014 and 31 March 2017.ResultsReasons for non-retrieval of eyes were recorded as: family wishes (n=1339, 48% of total cases); medical reasons (n=841, 30%); deceased wishes (n=180, 7%). In >50% of recorded cases, reasons for non-donation were based on family’s knowledge of the deceased wishes, their perception of the deceased wishes and specific concerns regarding processes or effects of eye donation (for the deceased body). Findings are discussed with respect to the existing theoretical perspectives.ConclusionEye donation involves distinct psychological and sociocultural factors for families and HCPs that have not been fully explored in research or integrated into service design. We propose areas for future research and service development including potential of only retrieving corneal discs as opposed to full eyes to reduce disfigurement concerns; public education regarding donation processes; exploration of how request processes potentially influence acceptance of eye donation; procedures for assessment of familial responses to information provided during consent conversations.

scholarly journals Distributed NLP Framework to create new federated data-sets

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Simon Thompson
Keyword(s):  
Low Cost ◽  
Cost Effective ◽  
Free Text ◽  
Data Sets ◽  
Digital Information ◽  
Text Data ◽  
Governance Model ◽  
Large Numbers ◽  
Governance Challenges ◽  
The Uk

IntroductionAlthough healthcare systems generate significant amounts of structured data, there remains a untapped wealth of unstructured narrative data. In the UK, 70% of all NHS digital information is in unstructured form. The NHS has no plans to computerise this data, as it is simply would not be cost effective. Objectives and ApproachOur aim was to make all digitised free text within partner organisations accessible for NLP processing for research, while overcoming information governance challenges. We developed a distributed GATE-based NLP platform enabling NLP models to be automatically distributed and materialised against the free text data in each organisation to create new conventional datasets, which can then be transmitted back using an established governance model. This work adds NLP capability to the UK’s National Research Data Appliances, deployed throughout Wales and beyond and uses many open source components enabling a deployment without additional software licence costs, leading to increased potential use cases. ResultsWe have been able to demonstrate a fully federated network of analytical nodes into NHS Wales, which takes the analytical NLP model to the free text data, as opposed to the data having to travel. Under a common, acceptable, governance model, an approval system enables organisations such as health boards to give permission for projects and NLP models to be used against their data. In a proof of concept project, we have run a number of NLP models over large numbers of documents, which the platform has ingested, converted and analysed. We have developed a proposal for a common NLP model definition format to enable models to be interchangeable between different research groups and systems. Sharing/discovery of established NLP models is key deliverable. Conclusion/ImplicationsThe implications of being able to send the query to the data, enables access to this untapped data source, finally enabling the realisation of new datasets, while abiding by any IG framework. The low cost and simplicity will enable a many research opportunities, some of which are already being realised.

scholarly journals Themes Underlying Australian General Practitioner Views towards Chiropractic and Osteopathy: An Assessment of Free Text Data from a Cross-Sectional Survey

2018 ◽  
Vol 2018 ◽  
pp. 1-7 ◽  
Author(s):  
Sandra Grace ◽  
Roger Engel ◽  
Ian Jalsion
Keyword(s):  
General Practitioner ◽  
Critical Realism ◽  
Medical Profession ◽  
Evidence Base ◽  
Free Text ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Text Data ◽  
Health Practitioners ◽  
Generative Mechanisms

The Australian chiropractic and osteopathic professions underwent a period of significant transformation between 1960 and 2000. This resulted in an improvement in the views held by the medical profession towards the two professions. However, a recent survey of Australian general practitioners (GPs) reported that a number of GPs still hold negative views towards chiropractors and osteopaths. This paper examines these views from the perspective of critical realism and explores the generative mechanisms that can influence the willingness of health practitioners to collaborate over patient care. A qualitative analysis of open-ended responses to a survey of 630 Australian GPs was conducted. Unfavourable attitudes of GPs towards chiropractors and osteopaths included perceived lack of safety, efficacy, and inadequacy of training, despite chiropractic’s and osteopathy’s reliance on the same evidence base and similar training to those of other manual therapy professions such as physiotherapy. These attitudes may be underpinned by the professional biases against chiropractic and osteopathy that continue to marginalise the professions within the Australian healthcare system. Continued investment in the research base for chiropractic and osteopathic practice is required, along with raising the awareness of GPs about the education and skills of chiropractors and osteopaths.

scholarly journals Patient use of an online triage platform: a mixed-methods retrospective exploration in UK primary care

2019 ◽  
Vol 69 (682) ◽  
pp. e336-e344 ◽  
Author(s):  
Abi Eccles ◽  
Michael Hopper ◽  
Amadea Turk ◽  
Helen Atherton
Keyword(s):  
Ease Of Use ◽  
Free Text ◽  
Specific Symptom ◽  
Telephone Consultation ◽  
Face To Face ◽  
Qualitative Approaches ◽  
Patterns Of Use ◽  
Levels Of Use ◽  
The Uk ◽  
Patient Use

BackgroundRecent years have seen the introduction of online triage allowing patients to describe their problem via an online form. Subsequently, a GP telephones the patient, conducting a telephone consultation or arranging a face-to-face consultation.AimThis study aimed to explore patterns-of-use and patients’ experiences of using an online triage system.Design and settingThis retrospective study analysed routinely collected data (from all practices using the ‘askmyGP’ platform for the duration of the study period, 19 May 2017 to 31 July 2017), using both quantitative and qualitative approaches. Data originated from an online triaging platform used by patients in nine general practices across the UK.MethodData from 5447 patients were quantitatively analysed to describe characteristics of users, patterns-of-use, and reasons given by patients for using the platform. Free-text comments left by patients (n = 569) on their experience of use were qualitatively analysed.ResultsHighest levels of use were observed in females (65.5%, n = 3570) and those aged 25–34 years. Patterns of use were high between 0800 and 0959, and on Mondays and Tuesdays. Use outside of GP practice opening hours was low. Common reasons for using the platform were for medication-related enquiries, for administrative requests, and to report a specific symptom. Comments left by patients suggested advantages to using the platform, for example, convenience and the written format, but these did not extend to all users.ConclusionPatterns-of-use and patient types were in line with typical contacts to GP practices. Though the age of users was broad, highest levels of use were from younger patients. The perceived advantages to using online triage, such as convenience and ease of use, are often context dependent.

scholarly journals Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK

2020 ◽  
Vol 46 (6) ◽  
pp. 367-377 ◽  
Author(s):  
Elizabeth Ford ◽  
Malcolm Oswald ◽  
Lamiece Hassan ◽  
Kyle Bozentko ◽  
Goran Nenadic ◽  
...  
Keyword(s):  
Clinical Information ◽  
Service Planning ◽  
Structured Data ◽  
Free Text ◽  
Patient Privacy ◽  
Text Data ◽  
The Public ◽  
Public Benefit ◽  
The Uk ◽  
Privacy Risks

BackgroundUse of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical policy.MethodsEighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns.ResultsJurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing.ConclusionsInformed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data.

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