Pauline Heslop, Anna Marriott, Peter Fleming, Matt Hoghton and Lesley Russ
This paper seeks to provide a commentary on the previous paper in this issue “Does he have sugar in his tea? Communication between people with learning disabilities, their carers…
Abstract
Purpose
This paper seeks to provide a commentary on the previous paper in this issue “Does he have sugar in his tea? Communication between people with learning disabilities, their carers and hospital staff”.
Design/methodology/approach
This commentary outlines some “reasonable adjustments” for people with learning disabilities in primary and secondary care.
Findings
The paper finds that there is a potential for Hospital Passport‐type documents to provide a better link between individuals and primary and secondary healthcare services.
Originality/value
The paper suggests that one way of helping to improve outcomes for people with learning disabilities would be to work more creatively across traditional boundaries.
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Keywords
Pauline Heslop and Anna Marriott
This paper aims to outline the process of undertaking the Confidential Inquiry (CI) into the deaths of people with learning disabilities and discusses three particular issues…
Abstract
Purpose
This paper aims to outline the process of undertaking the Confidential Inquiry (CI) into the deaths of people with learning disabilities and discusses three particular issues: engaging with professionals; maintaining confidentiality; and the tension between wanting to base the findings on a sufficiently large number of cases so that the findings are robust and reliable, but also wanting to make immediate changes to any potentially modifiable factors found to contribute to the deaths of people with learning disabilities.
Design/methodology/approach
The CI into the deaths of people with learning disabilities reviews the deaths of all people with learning disabilities living in the (former) Avon and Gloucestershire areas. It has been commissioned by the Department of Health to run until March 2013. One of the key drivers for a CI has been the work of Mencap in exposing the unequal health care that some people with learning disabilities received in the NHS.
Findings
The principal goal of the CI is to improve the standard and quality of care for people with learning disabilities and ultimately their health outcomes. The CI team aims to detect potentially modifiable contributory factors in the care of a person with learning disabilities who has subsequently died, share any examples of good practice in their care and provide information to guide the commissioning of services.
Originality/value
It is anticipated that the findings of the CI will provide a considerable amount of evidence on which to improve the standard and quality of care for people with learning disabilities and ultimately their health outcomes.
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Anna Marriott, Sue Turner, Sharon Ashby and Deborah Rees
– The purpose of this paper is to describe the role of the screening liaison nurses for adults with learning disabilities employed by Peninsula Community Health.
Abstract
Purpose
The purpose of this paper is to describe the role of the screening liaison nurses for adults with learning disabilities employed by Peninsula Community Health.
Design/methodology/approach
This paper reports on the national situation in regard to cancer screening for people with learning disabilities and explores the barriers which limit their participation in these screening programmes. It describes the screening liaison nurse role and presents case examples of the work they do.
Findings
The local screening rates for people with learning disabilities have increased since the creation of this role in 2011.
Originality/value
Increasing the uptake of cancer screening by people with learning disabilities is clearly in line with existing national priorities. To the author’s knowledge this is a unique role in this country and the authors propose that other areas would benefit from adopting this model of working.
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Samantha Flynn, Sue Caton, Amanda Gillooly, Jill Bradshaw, Richard P. Hastings, Chris Hatton, Andrew Jahoda, Peter Mulhall, Stuart Todd, Stephen Beyer and Laurence Taggart
The purpose of this paper is to present data about the experiences of adults with learning disabilities during the COVID-19 pandemic across the UK.
Abstract
Purpose
The purpose of this paper is to present data about the experiences of adults with learning disabilities during the COVID-19 pandemic across the UK.
Design/methodology/approach
Interviews were conducted with 609 adults with learning disabilities. Family carers and support staff of another 351 adults with learning disabilities completed a proxy online survey. The data were collected between December 2020 and February 2021 and concerned both worries/negatives and anything positive that had happened because of the COVID-19 pandemic.
Findings
Social isolation was the most commonly reported worry/negative for adults with learning disabilities, with other frequently reported worries/negatives including: changes to/loss of routine; loss of support/services; and decreased health/well-being/fitness. A large proportion of participants indicated that nothing positive had happened because of COVID-19, but some positives were reported, including: digital inclusion; more time spent with important people; improved health/well-being/fitness; and, a slower pace of life.
Practical implications
Future pandemic planning must ensure that adults with learning disabilities are supported to maintain social contact with the people who matter to them and to support their health and well-being (including maintaining access to essential services and activities). Some adults with learning disabilities may benefit from additional support to improve their digital confidence and access. This may in turn enable them to maintain contact with family, friends and support services/activities.
Originality/value
This is the largest study about the experiences of adults with learning disabilities during the COVID-19 pandemic in the UK. The authors primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities throughout the study.
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Samantha Flynn, Chris Hatton, Richard P. Hastings, Nikita Hayden, Sue Caton, Pauline Heslop, Andrew Jahoda, Stuart Todd, Edward Oloidi, Stephen Beyer, Peter Mulhall and Laurence Taggart
This paper aims to present data about access to and use of health and social care services by adults with learning disabilities during the COVID-19 pandemic in England, Northern…
Abstract
Purpose
This paper aims to present data about access to and use of health and social care services by adults with learning disabilities during the COVID-19 pandemic in England, Northern Ireland, Scotland and Wales.
Design/methodology/approach
Data were collected in three waves between December 2020 and September 2021 and concerned the use of health and social care services during the COVID-19 pandemic. Data were collected at one or more time-points directly from 694 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 447 adults with learning disabilities.
Findings
Many people with learning disabilities who reported regularly accessing services/supports pre-pandemic were not receiving them during the timeframe of this study. There were indications of increasing access to some services and supports between Wave 2 and 3, but this was not universal.
Practical implications
People in Cohort 2, who were likely to have severe/profound learning disabilities, were less frequently reported to access online community activities than people in Cohort 1, which is likely to exacerbate existing social isolation for this cohort and their family carers. Service providers should seek to ensure equitable access to services and activities for all people with learning disabilities in the event of future lockdowns or pandemics.
Originality/value
This is the largest longitudinal study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. We primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities and family members throughout the study.
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Anna L. Neatrour, Elizabeth Callaway and Rebekah Cummings
This paper aims to determine if the digital humanities technique of topic modeling would reveal interesting patterns in a corpus of library-themed literature focused on the future…
Abstract
Purpose
This paper aims to determine if the digital humanities technique of topic modeling would reveal interesting patterns in a corpus of library-themed literature focused on the future of libraries and pioneer a collaboration model in librarian-led digital humanities projects. By developing the project, librarians learned how to better support digital humanities by actually doing digital humanities, as well as gaining insight on the variety of approaches taken by researchers and commenters to the idea of the future of libraries.
Design/methodology/approach
The researchers collected a corpus of over 150 texts (articles, blog posts, book chapters, websites, etc.) that all addressed the future of the library. They ran several instances of latent Dirichlet allocation style topic modeling on the corpus using the programming language R. Once they produced a run in which the topics were cohesive and discrete, they produced word-clouds of the words associated with each topic, visualized topics through time and examined in detail the top five documents associated with each topic.
Findings
The research project provided an effective way for librarians to gain practical experience in digital humanities and develop a greater understanding of collaborative workflows in digital humanities. By examining a corpus of library-themed literature, the researchers gained new insight into how the profession grapples with the idea of the future and an appreciation for topic modeling as a form of literature review.
Originality/value
Topic modeling a future-themed corpus of library literature is a unique research project and provides a way to support collaboration between library faculty and researchers from outside the library.
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Anna L. Neatrour, Jeremy Myntti and Rachel J. Wittmann
When faced with events, such as the global pandemic of coronavirus disease 2019 (COVID-19), libraries have a unique opportunity to develop a community facing response through…
Abstract
Purpose
When faced with events, such as the global pandemic of coronavirus disease 2019 (COVID-19), libraries have a unique opportunity to develop a community facing response through born-digital collections. These collections provide challenges for metadata creation, collection development policies, workflows, and digital preservation. This paper aims to provide an overview of the Utah COVID-19 digital collection, with a discussion of impact and lessons learned.
Design/methodology/approach
This paper provides a case study of a born-digital collection initiative undertaken at the University of Utah in response to the COVID-19 pandemic. The project prompted engagement with the University of Utah communities and people across the state. Workflows, metadata management and partnerships are discussed, to provide a model for institutions developing similar projects during a time of crisis.
Findings
While the project was launched with open-ended and flexible goals, the response from the community has been both surprising and gratifying. Statistics and examples demonstrating reuse of collection materials are provided to highlight the impact and potential of community engagement.
Originality/value
Digital collecting projects during a historical event are not new, however the restrictions placed upon people worldwide during the COVID-19 pandemic created interesting circumstances for building this collection. Several lessons were learned throughout the project which will be useful for other institutions embarking upon related projects.
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Anna Halafoff, Ruth Fitzpatrick and Cristina Rocha
The spread of conspiracy theories and associated vaccine rejection within the wellness industry and spiritual communities during the COVID-19 pandemic attracted significant media…
Abstract
The spread of conspiracy theories and associated vaccine rejection within the wellness industry and spiritual communities during the COVID-19 pandemic attracted significant media and scholarly attention. Informed by the ‘(Con)spirituality, Science and COVID-19 in Australia’ project (2020–2021) (Halafoff, Marriott, et al., 2022; Halafoff, Weng, et al., 2022; Roginski & Rocha, 2022), funded by the Templeton Religion Trust and awarded via the International Research Network for the Study of Science and Belief in Society (INSBS), this chapter reports on findings pertaining to holistic spirituality, purity doctrines and wellness, arising from a parallel pilot study on ‘Spirituality and Wellness (SWell) in Australia’ (2021). Both studies have revealed a ‘spiritual complexity’ in Australia and internationally, and the authors report on this here, focussed particularly on spirituality’s quest for pristine bodies, and on spiritual ‘moral communities’ (Ganga Kieffer, 2023) exceptionalism and relationality.