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Article ; Online: Supporting people with Motor Neuron Disease (MND) to make decisions about gastrostomy feeding tube placement: a survey of UK healthcare professionals' practice and beliefs.

White, Sean / O'Cathain, Alicia / Halliday, Vanessa / Bradburn, Michael / McDermott, Christopher J

Amyotrophic lateral sclerosis & frontotemporal degeneration

2024 Volume 25, Issue 3-4, Page(s) 290–298

Abstract: Objective: Understand the practice and beliefs of healthcare professionals (HCPs) supporting the decision-making of people with MND (pwMND) about gastrostomy placement, including identifying differences between professions.: Methods: An online cross- ... ...

Abstract	Objective: Understand the practice and beliefs of healthcare professionals (HCPs) supporting the decision-making of people with MND (pwMND) about gastrostomy placement, including identifying differences between professions. Methods: An online cross-sectional survey disseminated to HCPs who support the decision-making of pwMND about gastrostomy placement. Results: A total of 139 participants completed the survey including representation from a range of healthcare professions. A third (36/101, 36%) initiated discussions about gastrostomy later in practice than they believed was ideal. In relation to the outcome of declining compared to accepting gastrostomy, participants were more likely to discuss aspiration (80% vs. 68%), choking (76% vs. 58%) and prognosis (36% vs. 22%). Participants believed gastrostomies should be placed after a mean 8.1% weight loss since symptom-onset. More participants favored gastrostomy placement before pwMND presented with respiratory symptoms (45%) compared to onset of dysphagia (11%). Half believed pwMND placed gastrostomies too late. Participants were more likely to 'often'/'always' recommend pwMND to have a gastrostomy (23%) than continue without (7%) or decline (4%) gastrostomy, when believing these were the best option for pwMND. Nurses and dietitians discussed the broadest range of information, while doctors were more likely to discuss mortality risk and prognosis. Conclusion: There is variation in HCPs practice and beliefs about initiating discussions, the sharing of information and recommendations, and timing, about gastrostomy placement. The information shared varies by profession and there is evidence of sub-optimal communication between HCPs. Further research is required to understand how these findings may impact on the decision-making of pwMND about gastrostomy.
MeSH term(s)	Humans ; Gastrostomy ; Amyotrophic Lateral Sclerosis ; Cross-Sectional Studies ; Motor Neuron Disease/surgery ; United Kingdom ; Delivery of Health Care
Language	English
Publishing date	2024-02-09
Publishing country	England
Document type	Journal Article
ZDB-ID	2705049-X
ISSN	2167-9223 ; 2167-8421
ISSN (online)	2167-9223
ISSN	2167-8421
DOI	10.1080/21678421.2024.2314061
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Zs.A 5874: Show issues

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Article: Interview with Sean White.

White, Sean

British journal of community nursing

2013 Volume Suppl Nutrition, Page(s) S32–4

MeSH term(s)	Humans ; Nurse's Role ; Parenteral Nutrition, Home/nursing ; United Kingdom
Language	English
Publishing date	2013-11-19
Publishing country	England
Document type	Interview ; Portrait
ZDB-ID	2146386-4
ISSN	1462-4753
ISSN	1462-4753
DOI	10.12968/bjcn.2013.18.sup10.s32
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Zs.A 5888: Show issues			Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular Jg. 1995 - 2021: Lesesall (2.OG) ab Jg. 2022: Lesesaal (EG)
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Article ; Online: Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis.

White, Sean / O'Cathain, Alicia / Halliday, Vanessa / Croot, Liz / McDermott, Christopher J

Health expectations : an international journal of public participation in health care and health policy

2023 Volume 26, Issue 4, Page(s) 1418–1435

Abstract: Background: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non-invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the ... ...

Abstract	Background: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non-invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions. Methods: The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis. Findings: Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision-making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision-making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change. Conclusion: Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation. Patient or public contribution: The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs).
MeSH term(s)	Humans ; Gastrostomy/psychology ; Quality of Life ; Motor Neuron Disease/therapy ; Motor Neuron Disease/complications ; Motor Neuron Disease/psychology ; Health Personnel ; Caregivers/psychology
Language	English
Publishing date	2023-05-31
Publishing country	England
Document type	Journal Article ; Review
ZDB-ID	2119434-8
ISSN	1369-7625 ; 1369-6513
ISSN (online)	1369-7625
ISSN	1369-6513
DOI	10.1111/hex.13786
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Zs.A 5896: Show issues

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Book ; Online: Solar PV Engineering and Installation

White, Sean

Preparation for the NABCEP PV Installation Professional Certification

2015

Language	English
Size	Online-Ressource (248 p)
Publisher	Taylor and Francis
Publishing place	Florence
Document type	Book ; Online
Note	Description based upon print version of record
ISBN	9780415713337 ; 0415713331
Database	Library catalogue of the German National Library of Science and Technology (TIB), Hannover

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Article: Effect of skin optical absorption on speckleplethysmographic (SPG) signals.

Rice, Tyler B / Yang, Bruce / White, Sean

Biomedical optics express

2020 Volume 11, Issue 9, Page(s) 5352–5361

Abstract: Recent advances in optical technology have emerged for measuring blood flow in the extremities using speckleplethysmography (SPG), which may address needs in vascular medicine and other fields. SPG has demonstrated a highly linear response with flow rate, ...

Abstract	Recent advances in optical technology have emerged for measuring blood flow in the extremities using speckleplethysmography (SPG), which may address needs in vascular medicine and other fields. SPG has demonstrated a highly linear response with flow rate, but the susceptibility to differences in skin tone is unclear. Two validation studies using skin-simulating phantoms and a simple clinical protocol were conducted to determine the impact of absorbing skin layers on SPG measurements. Benchtop results demonstrated that the coefficient of determination between known flow rate and SPG was highly linear (R
Language	English
Publishing date	2020-08-31
Publishing country	United States
Document type	Journal Article
ZDB-ID	2572216-5
ISSN	2156-7085
ISSN	2156-7085
DOI	10.1364/BOE.403501
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article: Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study

White, Sean / Brereton, Louise

Clinical nutrition. 2018 June, v. 37, no. 3

2018

Abstract: Although studies demonstrate the range of impacts of home enteral feeding (HEF) on patients' lives, a dearth of evidence focussing on the decision to have a gastrostomy placed exists. The importance of taking account of patient values (i.e. their unique ... ...

Abstract	Although studies demonstrate the range of impacts of home enteral feeding (HEF) on patients' lives, a dearth of evidence focussing on the decision to have a gastrostomy placed exists. The importance of taking account of patient values (i.e. their unique preferences, concerns and expectations) when considering the consequences of clinical decisions is increasingly recognised. This study explores patient's views on the role of their values in their decision to have a gastrostomy.Using a qualitative approach and concurrent data collection and analysis, a convenience sample of 11 patients receiving HEF participated in one semi-structured interview in their own home. Participants were asked to i) consider the impact of HEF on their lives and ii) how this information could have been used in their decision making to have a gastrostomy. Interviews were transcribed verbatim and key themes were developed through inductive thematic analysis using NVivo 10 to manage the data.Three key themes were identified: 1. Weighing up the benefits and concerns: a positive health outcome outweighed concerns about HEF. However, being asked to explicitly consider what individuals consider to be excessive information about the impact of HEF may increase anxiety; 2. Perceptions of choice: most patients felt they were either not given a choice or that they did not have a choice as there was not a viable alternative to HEF. 3. Expectations and regret: considering values may have helped manage expectations of HEF, although the decision to place a gastrostomy was usually not regretted.Taking account of individual values may enable better tailoring of decision-making. How patient values are clarified during decision making processes requires further study in relation to the varied indications for gastrostomy and the time available for decision making.
Keywords	anxiety ; data collection ; decision making ; enteral feeding ; interviews ; patients
Language	English
Dates of publication	2018-06
Size	p. 1046-1052.
Publishing place	Elsevier Ltd
Document type	Article
ZDB-ID	604812-2
ISSN	1532-1983 ; 0261-5614
ISSN (online)	1532-1983
ISSN	0261-5614
DOI	10.1016/j.clnu.2017.04.022
Database	NAL-Catalogue (AGRICOLA)

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Zs.A 1774: Show issues

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Article ; Online: A method for machine learning generation of realistic synthetic datasets for validating healthcare applications.

Arvanitis, Theodoros N / White, Sean / Harrison, Stuart / Chaplin, Rupert / Despotou, George

Health informatics journal

2022 Volume 28, Issue 2, Page(s) 14604582221077000

Abstract: Digital health applications can improve quality and effectiveness of healthcare, by offering a number of new tools to users, which are often considered a medical device. Assuring their safe operation requires, amongst others, clinical validation, needing ...

Abstract	Digital health applications can improve quality and effectiveness of healthcare, by offering a number of new tools to users, which are often considered a medical device. Assuring their safe operation requires, amongst others, clinical validation, needing large datasets to test them in realistic clinical scenarios. Access to datasets is challenging, due to patient privacy concerns. Development of synthetic datasets is seen as a potential alternative. The objective of the paper is the development of a method for the generation of realistic synthetic datasets, statistically equivalent to real clinical datasets, and demonstrate that the Generative Adversarial Network (GAN) based approach is fit for purpose. A generative adversarial network was implemented and trained, in a series of six experiments, using numerical and categorical variables, including ICD-9 and laboratory codes, from three clinically relevant datasets. A number of contextual steps provided the success criteria for the synthetic dataset. A synthetic dataset that exhibits very similar statistical characteristics with the real dataset was generated. Pairwise association of variables is very similar. A high degree of Jaccard similarity and a successful K-S test further support this. The proof of concept of generating realistic synthetic datasets was successful, with the approach showing promise for further work.
MeSH term(s)	Delivery of Health Care ; Humans ; Machine Learning ; Neural Networks, Computer
Language	English
Publishing date	2022-04-12
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2213115-2
ISSN	1741-2811 ; 1460-4582
ISSN (online)	1741-2811
ISSN	1460-4582
DOI	10.1177/14604582221077000
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Zs.A 6237: Show issues

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Book ; Online: Solar Photovoltaic Basics

White, Sean

A Study Guide for the NABCEP Entry Level Exam

2014

Abstract: Whether or not you are taking the NABCEP Entry Level Exam, learning the material covered in this book is the best investment you can make towards your place in the solar industry.This book explains the science of photovoltaics (PV) in a way that most ... ...

Abstract	Whether or not you are taking the NABCEP Entry Level Exam, learning the material covered in this book is the best investment you can make towards your place in the solar industry.This book explains the science of photovoltaics (PV) in a way that most people can understand using the curriculum which reflects the core modules of the NABCEP Entry Level Exam.Providing complete coverage of the NABCEP syllabus in easily accessible chapters, addressing all of the core objectives that will aid in passing the PV Entry Level Exam including the ten main skill sets:PV Markets and Applications Safety Basic
Language	English
Size	Online-Ressource (169 p)
Publisher	Taylor and Francis
Publishing place	Hoboken
Document type	Book ; Online
Note	Description based upon print version of record
ISBN	9780415713351 ; 0415713358
Database	Library catalogue of the German National Library of Science and Technology (TIB), Hannover

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Article ; Online: Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study.

White, Sean / Brereton, Louise

Clinical nutrition (Edinburgh, Scotland)

2017 Volume 37, Issue 3, Page(s) 1046–1052

Abstract: Background & aims: Although studies demonstrate the range of impacts of home enteral feeding (HEF) on patients' lives, a dearth of evidence focussing on the decision to have a gastrostomy placed exists. The importance of taking account of patient values ...

Abstract	Background & aims: Although studies demonstrate the range of impacts of home enteral feeding (HEF) on patients' lives, a dearth of evidence focussing on the decision to have a gastrostomy placed exists. The importance of taking account of patient values (i.e. their unique preferences, concerns and expectations) when considering the consequences of clinical decisions is increasingly recognised. This study explores patient's views on the role of their values in their decision to have a gastrostomy. Methods: Using a qualitative approach and concurrent data collection and analysis, a convenience sample of 11 patients receiving HEF participated in one semi-structured interview in their own home. Participants were asked to i) consider the impact of HEF on their lives and ii) how this information could have been used in their decision making to have a gastrostomy. Interviews were transcribed verbatim and key themes were developed through inductive thematic analysis using NVivo 10 to manage the data. Results: Three key themes were identified: 1. Weighing up the benefits and concerns: a positive health outcome outweighed concerns about HEF. However, being asked to explicitly consider what individuals consider to be excessive information about the impact of HEF may increase anxiety; 2. Perceptions of choice: most patients felt they were either not given a choice or that they did not have a choice as there was not a viable alternative to HEF. 3. Expectations and regret: considering values may have helped manage expectations of HEF, although the decision to place a gastrostomy was usually not regretted. Conclusions: Taking account of individual values may enable better tailoring of decision-making. How patient values are clarified during decision making processes requires further study in relation to the varied indications for gastrostomy and the time available for decision making.
MeSH term(s)	Aged ; Aged, 80 and over ; Clinical Decision-Making ; Enteral Nutrition/psychology ; Enteral Nutrition/statistics & numerical data ; Female ; Gastrostomy/psychology ; Gastrostomy/statistics & numerical data ; Humans ; Interviews as Topic ; Male ; Middle Aged ; Patient Preference/psychology ; Patient Preference/statistics & numerical data ; Qualitative Research ; Time
Language	English
Publishing date	2017-05-06
Publishing country	England
Document type	Evaluation Studies ; Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	604812-2
ISSN	1532-1983 ; 0261-5614
ISSN (online)	1532-1983
ISSN	0261-5614
DOI	10.1016/j.clnu.2017.04.022
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Adolescent Gender Differences in Tic- and Non-Tic-Related Impairments in Tourette Syndrome.

Larsh, Travis R / Wu, Steve W / Huddleston, David A / White, Sean / Lipps, Tara D / Gilbert, Donald L

Journal of child neurology

2023 Volume 38, Issue 5, Page(s) 283–289

Abstract: We aimed to compare tic- and non-tic-related impairment experienced by adolescent girls and boys (ages 13 through 17) with Tourette syndrome and associations with age. We extracted from the electronic health record child and parental responses to the ... ...

Abstract	We aimed to compare tic- and non-tic-related impairment experienced by adolescent girls and boys (ages 13 through 17) with Tourette syndrome and associations with age. We extracted from the electronic health record child and parental responses to the mini-Child Tourette Syndrome Impairment Scale (mini-CTIM) and other questionnaire data reflective of tic- and non-tic-related impairment of adolescents with Tourette syndrome presenting to our clinic over a 12-month period. We identified a total of 132 (49 female, 83 male) unique adolescent encounters. Mini-CTIM scores did not differ significantly between genders. Tic- and non-tic-related impairment were lower in older boys, but not older girls. Obsessive-compulsive symptoms correlated with parent-reported non-tic-related impairment experienced by adolescent girls but not boys. During adolescence, tic- and non-tic-related impairments may be less likely to improve with age in girls. Future longitudinal studies are needed to confirm this finding.
MeSH term(s)	Humans ; Male ; Adolescent ; Female ; Aged ; Tourette Syndrome/complications ; Tourette Syndrome/diagnosis ; Sex Factors ; Obsessive-Compulsive Disorder/complications ; Severity of Illness Index ; Longitudinal Studies ; Tic Disorders/complications
Language	English
Publishing date	2023-05-08
Publishing country	United States
Document type	Journal Article
ZDB-ID	639288-x
ISSN	1708-8283 ; 0883-0738
ISSN (online)	1708-8283
ISSN	0883-0738
DOI	10.1177/08830738231171959
Database	MEDical Literature Analysis and Retrieval System OnLINE

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