Amy M. Russell
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View article: Addressing the knowledge gap: development of stakeholder-informed training to improve the inclusion of adults with impaired capacity to consent in trials
Addressing the knowledge gap: development of stakeholder-informed training to improve the inclusion of adults with impaired capacity to consent in trials Open
Background Improving the inclusion of under-served groups in clinical trials is increasingly being seen as a priority area for research funders and regulators. Adults who lack capacity to make an informed decision about taking part in tria…
View article: Fitting a square peg in a round hole? A mixed-methods study on research ethics and collaborative health and social care research involving ‘vulnerable’ groups
Fitting a square peg in a round hole? A mixed-methods study on research ethics and collaborative health and social care research involving ‘vulnerable’ groups Open
Background Current research ethics frameworks that oversee health and social care research, in the United Kingdom and internationally, originated in biomedical research, having positivist underpinnings and an orientation towards experiment…
View article: Learning about Inclusion Health in undergraduate medical education: a scoping review
Learning about Inclusion Health in undergraduate medical education: a scoping review Open
Objectives An Inclusion Health movement has gained momentum over the past decade, aiming to address the extreme health inequities faced by socially excluded groups (including people experiencing homelessness, problem substance use, Gypsy, …
View article: Lack of data collection in clinical trials prevents us from evaluating inclusion of people with disabilities
Lack of data collection in clinical trials prevents us from evaluating inclusion of people with disabilities Open
Disability is not just under recorded or underreported, it is ignored, in trials. As disability is not collected as a demographic characteristic, people with disabilities remain underserved in trials. Given 16% of the global population liv…
View article: Computational design of highly signalling-active membrane receptors through solvent-mediated allosteric networks
Computational design of highly signalling-active membrane receptors through solvent-mediated allosteric networks Open
Protein catalysis and allostery require the atomic-level orchestration and motion of residues and ligand, solvent and protein effector molecules. However, the ability to design protein activity through precise protein–solvent cooperative i…
View article: Being Open about the Unopenable: a series of workshops about open research in qualitative research with socially marginalised people
Being Open about the Unopenable: a series of workshops about open research in qualitative research with socially marginalised people Open
A series of online and in-person workshops were organised between March and July 2023, including six online sessions and one in-person workshop, to explore the complexities and challenges of doing open qualitative research with the followi…
View article: Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers’ experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process
Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers’ experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process Open
Background The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medi…
View article: Using the Recommended Summary Plan for Emergency Care and Treatment in Primary Care: a mixed methods study
Using the Recommended Summary Plan for Emergency Care and Treatment in Primary Care: a mixed methods study Open
Background Emergency care treatment plans provide recommendations about treatment, including cardiopulmonary resuscitation, to be considered in emergency medical situations. In 2016, the Resuscitation Council United Kingdom developed a sta…
View article: Patient and public experience and views on digital systems for sharing records for health and care preferences at the end of life
Patient and public experience and views on digital systems for sharing records for health and care preferences at the end of life Open
Objective To explore patient and public experiences of and priorities for the use of shared patient health records for advance care planning. Methods A convergent-parallel mixed method design was used. An online national survey of patients…
View article: ‘Would I risk it again?’ The long-term impacts of a traumatic birth, as experienced by fathers
‘Would I risk it again?’ The long-term impacts of a traumatic birth, as experienced by fathers Open
Traumatic birth can result in fathers experiencing difficulties beyond the perinatal period, whilst thinking that they should not feel or discuss their distress. As a result of a traumatic birth fathers can experience ongoing guilt and poo…
View article: The challenges of open data sharing for qualitative researchers
The challenges of open data sharing for qualitative researchers Open
‘Open Science’ advocates for open access to scientific research, as well as sharing data, analysis plans and code in order to enable replication of results. However, these requirements typically fail to account for methodological differenc…
View article: Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers’ experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process
Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers’ experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process Open
Background The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medi…
View article: Health equity for persons with disabilities: a global scoping review on barriers and interventions in healthcare services
Health equity for persons with disabilities: a global scoping review on barriers and interventions in healthcare services Open
View article: The inclusion of adults with intellectual disabilities in health research – challenges, barriers and opportunities: a mixed‐method study among stakeholders in England
The inclusion of adults with intellectual disabilities in health research – challenges, barriers and opportunities: a mixed‐method study among stakeholders in England Open
Background The study aims to understand system barriers to research participation for people with intellectual disabilities. Methods A mixed‐methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a rand…
View article: ‘A more human approach … I haven’t found that really’: experiences of hoarding difficulties and seeking help
‘A more human approach … I haven’t found that really’: experiences of hoarding difficulties and seeking help Open
Background and aims: People with hoarding behaviours often struggle to engage in treatment. This study aimed to explore the experiences of a sample of people who identify as engaging in hoarding behaviours and who are seeking support. Expl…
View article: Addressing Healthcare Utilization and Costs for Older Adults with Limited Mobility Through a Multidisciplinary Home-Based Primary Care Program
Addressing Healthcare Utilization and Costs for Older Adults with Limited Mobility Through a Multidisciplinary Home-Based Primary Care Program Open
Pharmacist and community agency services-integrated HBPC was implemented in the community setting. There was a decrease in high-cost health care utilization and total health care expenditures for patients as compared with the previous year.
View article: Using a 10‐day mindfulness‐based app intervention to reduce burnout in special educators
Using a 10‐day mindfulness‐based app intervention to reduce burnout in special educators Open
The field of special education is thought to be a stressful profession due to the complex needs of the students. The current study aimed to assess the effectiveness of a mindfulness‐based smartphone application intervention for reducing bu…
View article: Complex and alternate consent pathways in clinical trials: methodological and ethical challenges encountered by underserved groups and a call to action
Complex and alternate consent pathways in clinical trials: methodological and ethical challenges encountered by underserved groups and a call to action Open
Background Informed consent is considered a fundamental requirement for participation in trials, yet obtaining consent is challenging in a number of populations and settings. This may be due to participants having communication or other di…
View article: Complex and alternate consent pathways in clinical trials: methodological and ethical challenges encountered by underserved groups and a call to action
Complex and alternate consent pathways in clinical trials: methodological and ethical challenges encountered by underserved groups and a call to action Open
Background Informed consent is considered a fundamental requirement for participation in trials, yet obtaining consent is challenging in a number of populations and settings. This may be due to participants having communication or other di…
View article: Breaking the cycle of inequalities for people with a learning disability
Breaking the cycle of inequalities for people with a learning disability Open
A woman with a learning disability is likely to die from similar causes to the general population, but on average 20 years earlier than a woman without a learning disability; a man with a learning disability is likely to die on average 13 …
View article: The impact of prehabilitation interventions on affective and functional outcomes for young to midlife adult cancer patients: A systematic review
The impact of prehabilitation interventions on affective and functional outcomes for young to midlife adult cancer patients: A systematic review Open
Objective Cancer remains one of the most enduring health crises of the modern world. Prehabilitation is a relatively new intervention aimed at preparing individuals for the stresses associated with treatment from diagnosis. Prehabilitation…
View article: Correction: Trial Forge Guidance 3: randomised trials and how to recruit and retain individuals from ethnic minority groups—practical guidance to support better practice
Correction: Trial Forge Guidance 3: randomised trials and how to recruit and retain individuals from ethnic minority groups—practical guidance to support better practice Open
View article: Trial Forge Guidance 3: randomised trials and how to recruit and retain individuals from ethnic minority groups—practical guidance to support better practice
Trial Forge Guidance 3: randomised trials and how to recruit and retain individuals from ethnic minority groups—practical guidance to support better practice Open
View article: Trial Forge Guidance 3: Randomised trials and how to recruit and retain individuals from ethnic minority groups– practical guidance to support better practice
Trial Forge Guidance 3: Randomised trials and how to recruit and retain individuals from ethnic minority groups– practical guidance to support better practice Open
Randomised trials, especially those intended to directly inform clinical practice and policy, should be designed to reflect all those who could benefit from the intervention under test should it prove effective. This does not always happen…
View article: Educator Attitudes Towards the Inclusion of Students with Autism Spectrum Disorders in Mainstream Education: a Systematic Review
Educator Attitudes Towards the Inclusion of Students with Autism Spectrum Disorders in Mainstream Education: a Systematic Review Open
Educator attitudes towards inclusive education impact its success. Attitudes differ depending on the SEN cohort, and so the current systematic review is the first to focus solely on students with autism spectrum disorders (ASD). Seven data…
View article: Drivers of Scope of Practice in Family Medicine: A Conceptual Model
Drivers of Scope of Practice in Family Medicine: A Conceptual Model Open
PURPOSE: The purpose of this study was to explore family medicine graduates’ attitudes and perspectives on modifiable and unmodifiable factors that influenced their scope of practice and career choices. By understanding how these factors i…
View article: 29 Enacting trust when recruiting people with an intellectual disability into health research
29 Enacting trust when recruiting people with an intellectual disability into health research Open
Research regulation frames people with learning disabilities as a 'vulnerable' group. Trust may be too readily given, it is assumed. The authority of the recruiter is assumed when recruiting in clinical settings. In my research I will exp…
View article: Blocking matrix metalloproteinase-mediated syndecan-4 shedding restores the endothelial glycocalyx and glomerular filtration barrier function in early diabetic kidney disease
Blocking matrix metalloproteinase-mediated syndecan-4 shedding restores the endothelial glycocalyx and glomerular filtration barrier function in early diabetic kidney disease Open
View article: The feasibility of using the EQ-5D-3L with adults with mild to moderate learning disabilities within a randomized control trial: a qualitative evaluation
The feasibility of using the EQ-5D-3L with adults with mild to moderate learning disabilities within a randomized control trial: a qualitative evaluation Open
View article: Health Promotion and Wellness Initiatives Targeting Chronic Disease Prevention and Management for Adults with Intellectual and Developmental Disabilities: Recent Advancements in Type 2 Diabetes
Health Promotion and Wellness Initiatives Targeting Chronic Disease Prevention and Management for Adults with Intellectual and Developmental Disabilities: Recent Advancements in Type 2 Diabetes Open