Background Patient and public involvement (PPI) groups can provide valuable input to create more ... more Background Patient and public involvement (PPI) groups can provide valuable input to create more accessible study documents with less jargon. However, we don't know whether this procedure improves accessibility for potential participants. Aims We assessed whether participant information sheets were rated as more accessible after PPI review and which aspects of information sheets and study design were important to mental health patients compared with a control group with no mental health service use. Method This was a double-blind quasi-experimental study using a mixed-methods explanatory design. Patients and control participants quantitatively rated pre- and post-review documents. Semi-structured interviews were thematically analysed to gain qualitative feedback on opinions of information sheets and studies. Two-way multivariate analysis of variance was used to detect differences in ratings between pre- and post-review documents. Results We found no significant (P < 0.05) imp...
Avoidable harm—that is, harm to service users caused by unsafe or improper interventions, practic... more Avoidable harm—that is, harm to service users caused by unsafe or improper interventions, practices or services and which could have been mitigated or prevented—is embedded in social care legislation and inspections. However, the concept of avoidable harm has largely been defined by policymakers, academics, practitioners, regulators and services, with little known about service users’ experiences of avoidable harm in practice. This survivor-controlled review maps and synthesises peer-reviewed literature on service users experience of social and psychological avoidable harm in mental health social care (MHSC) in England. The review was guided by an Advisory Group of practitioners and service users. Six databases were systematically searched between January 2008 and June 2020 to identify relevant literature. Following de-duplication, 3,529 records were screened using inclusion and exclusion criteria. This led to full-text screening of eighty-four records and a final corpus of twenty-t...
Background Dementia misconceptions on Twitter can have detrimental or harmful effects. Machine le... more Background Dementia misconceptions on Twitter can have detrimental or harmful effects. Machine learning (ML) models codeveloped with carers provide a method to identify these and help in evaluating awareness campaigns. Objective This study aimed to develop an ML model to distinguish between misconceptions and neutral tweets and to develop, deploy, and evaluate an awareness campaign to tackle dementia misconceptions. Methods Taking 1414 tweets rated by carers from our previous work, we built 4 ML models. Using a 5-fold cross-validation, we evaluated them and performed a further blind validation with carers for the best 2 ML models; from this blind validation, we selected the best model overall. We codeveloped an awareness campaign and collected pre-post campaign tweets (N=4880), classifying them with our model as misconceptions or not. We analyzed dementia tweets from the United Kingdom across the campaign period (N=7124) to investigate how current events influenced misconception pre...
Background As the number of mental health apps has grown, increasing efforts have been focused on... more Background As the number of mental health apps has grown, increasing efforts have been focused on establishing quality tailored reviews. These reviews prioritize clinician and academic views rather than the views of those who use them, particularly those with lived experiences of mental health problems. Given that the COVID-19 pandemic has increased reliance on web-based and mobile mental health support, understanding the views of those with mental health conditions is of increasing importance. Objective This study aimed to understand the opinions of people with mental health problems on mental health apps and how they differ from established ratings by professionals. Methods A mixed methods study was conducted using a web-based survey administered between December 2020 and April 2021, assessing 11 mental health apps. We recruited individuals who had experienced mental health problems to download and use 3 apps for 3 days and complete a survey. The survey consisted of the One Mind P...
Background There is evidence of increased mental health problems during the early stages of the C... more Background There is evidence of increased mental health problems during the early stages of the COVID-19 pandemic. We aimed to identify the factors that put certain groups of people at greater risk of mental health problems. Methods We took a participatory approach, involving people with lived experience of mental health problems and/or carers, to generate a set of risk factors and potential moderators of the effects of COVID on mental health. An online cross-sectional survey was completed by 1464 United Kingdom residents between 24th April and 27th June 2020. The survey had questions on whether respondents were existing mental health service users and or carers, level of depression (PHQ9) and anxiety (GAD7), demographics, threat and coping appraisals, perceived resilience (BRS), and specific coping behaviours (validated as part of this study). The relationship between responses and coping strategies was measured using tetrachoric correlations. Structural equation modelling was used...
BACKGROUND Dementia misconceptions on social media are common, with negative effects on people wi... more BACKGROUND Dementia misconceptions on social media are common, with negative effects on people with the condition, their carers, and those who know them. This study codeveloped a thematic framework with carers to understand the forms these misconceptions take on Twitter. OBJECTIVE The aim of this study is to identify and analyze types of dementia conversations on Twitter using participatory methods. METHODS A total of 3 focus groups with dementia carers were held to develop a framework of dementia misconceptions based on their experiences. Dementia-related tweets were collected from Twitter’s official application programming interface using neutral and negative search terms defined by the literature and by carers (N=48,211). A sample of these tweets was selected with equal numbers of neutral and negative words (n=1497), which was validated in individual ratings by carers. We then used the framework to analyze, in detail, a sample of carer-rated negative tweets (n=863). RESULTS A tot...
Background Patient and public involvement can improve study outcomes, but little data have been c... more Background Patient and public involvement can improve study outcomes, but little data have been collected on why this might be. We investigated the impact of the Feasibility and Support to Timely Recruitment for Research (FAST-R) service, made up of trained patients and carers who review research documents at the beginning of the research pipeline. Aims To investigate the impact of the FAST-R service, and to provide researchers with guidelines to improve study documents. Method A mixed-methods design assessing changes and suggestions in documents submitted to the FAST-R service from 2011 to 2020. Quantitative measures were readability, word count, jargon words before and after review, the effects over time and if changes were implemented. We also asked eight reviewers to blindly select a pre- or post-review participant information sheet as their preferred version. Reviewers’ comments were analysed qualitatively via thematic analysis. Results After review, documents were longer and c...
Background Patient and public involvement (PPI) groups can provide valuable input to create more ... more Background Patient and public involvement (PPI) groups can provide valuable input to create more accessible study documents with less jargon. However, we don't know whether this procedure improves accessibility for potential participants. Aims We assessed whether participant information sheets were rated as more accessible after PPI review and which aspects of information sheets and study design were important to mental health patients compared with a control group with no mental health service use. Method This was a double-blind quasi-experimental study using a mixed-methods explanatory design. Patients and control participants quantitatively rated pre- and post-review documents. Semi-structured interviews were thematically analysed to gain qualitative feedback on opinions of information sheets and studies. Two-way multivariate analysis of variance was used to detect differences in ratings between pre- and post-review documents. Results We found no significant (P < 0.05) imp...
Avoidable harm—that is, harm to service users caused by unsafe or improper interventions, practic... more Avoidable harm—that is, harm to service users caused by unsafe or improper interventions, practices or services and which could have been mitigated or prevented—is embedded in social care legislation and inspections. However, the concept of avoidable harm has largely been defined by policymakers, academics, practitioners, regulators and services, with little known about service users’ experiences of avoidable harm in practice. This survivor-controlled review maps and synthesises peer-reviewed literature on service users experience of social and psychological avoidable harm in mental health social care (MHSC) in England. The review was guided by an Advisory Group of practitioners and service users. Six databases were systematically searched between January 2008 and June 2020 to identify relevant literature. Following de-duplication, 3,529 records were screened using inclusion and exclusion criteria. This led to full-text screening of eighty-four records and a final corpus of twenty-t...
Background Dementia misconceptions on Twitter can have detrimental or harmful effects. Machine le... more Background Dementia misconceptions on Twitter can have detrimental or harmful effects. Machine learning (ML) models codeveloped with carers provide a method to identify these and help in evaluating awareness campaigns. Objective This study aimed to develop an ML model to distinguish between misconceptions and neutral tweets and to develop, deploy, and evaluate an awareness campaign to tackle dementia misconceptions. Methods Taking 1414 tweets rated by carers from our previous work, we built 4 ML models. Using a 5-fold cross-validation, we evaluated them and performed a further blind validation with carers for the best 2 ML models; from this blind validation, we selected the best model overall. We codeveloped an awareness campaign and collected pre-post campaign tweets (N=4880), classifying them with our model as misconceptions or not. We analyzed dementia tweets from the United Kingdom across the campaign period (N=7124) to investigate how current events influenced misconception pre...
Background As the number of mental health apps has grown, increasing efforts have been focused on... more Background As the number of mental health apps has grown, increasing efforts have been focused on establishing quality tailored reviews. These reviews prioritize clinician and academic views rather than the views of those who use them, particularly those with lived experiences of mental health problems. Given that the COVID-19 pandemic has increased reliance on web-based and mobile mental health support, understanding the views of those with mental health conditions is of increasing importance. Objective This study aimed to understand the opinions of people with mental health problems on mental health apps and how they differ from established ratings by professionals. Methods A mixed methods study was conducted using a web-based survey administered between December 2020 and April 2021, assessing 11 mental health apps. We recruited individuals who had experienced mental health problems to download and use 3 apps for 3 days and complete a survey. The survey consisted of the One Mind P...
Background There is evidence of increased mental health problems during the early stages of the C... more Background There is evidence of increased mental health problems during the early stages of the COVID-19 pandemic. We aimed to identify the factors that put certain groups of people at greater risk of mental health problems. Methods We took a participatory approach, involving people with lived experience of mental health problems and/or carers, to generate a set of risk factors and potential moderators of the effects of COVID on mental health. An online cross-sectional survey was completed by 1464 United Kingdom residents between 24th April and 27th June 2020. The survey had questions on whether respondents were existing mental health service users and or carers, level of depression (PHQ9) and anxiety (GAD7), demographics, threat and coping appraisals, perceived resilience (BRS), and specific coping behaviours (validated as part of this study). The relationship between responses and coping strategies was measured using tetrachoric correlations. Structural equation modelling was used...
BACKGROUND Dementia misconceptions on social media are common, with negative effects on people wi... more BACKGROUND Dementia misconceptions on social media are common, with negative effects on people with the condition, their carers, and those who know them. This study codeveloped a thematic framework with carers to understand the forms these misconceptions take on Twitter. OBJECTIVE The aim of this study is to identify and analyze types of dementia conversations on Twitter using participatory methods. METHODS A total of 3 focus groups with dementia carers were held to develop a framework of dementia misconceptions based on their experiences. Dementia-related tweets were collected from Twitter’s official application programming interface using neutral and negative search terms defined by the literature and by carers (N=48,211). A sample of these tweets was selected with equal numbers of neutral and negative words (n=1497), which was validated in individual ratings by carers. We then used the framework to analyze, in detail, a sample of carer-rated negative tweets (n=863). RESULTS A tot...
Background Patient and public involvement can improve study outcomes, but little data have been c... more Background Patient and public involvement can improve study outcomes, but little data have been collected on why this might be. We investigated the impact of the Feasibility and Support to Timely Recruitment for Research (FAST-R) service, made up of trained patients and carers who review research documents at the beginning of the research pipeline. Aims To investigate the impact of the FAST-R service, and to provide researchers with guidelines to improve study documents. Method A mixed-methods design assessing changes and suggestions in documents submitted to the FAST-R service from 2011 to 2020. Quantitative measures were readability, word count, jargon words before and after review, the effects over time and if changes were implemented. We also asked eight reviewers to blindly select a pre- or post-review participant information sheet as their preferred version. Reviewers’ comments were analysed qualitatively via thematic analysis. Results After review, documents were longer and c...
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Papers by Georgie Hudson