Louise Roper

University of Liverpool | UoL · Department of Psychological Sciences

What do children and young people (CYP) think about research without prior consent in critical care situations?

Background: Convulsive status epilepticus (CSE) is the most common life-threatening neurological emergency in childhood. These children are also at risk of significant morbidity, with acute and chronic impact on the family and the health and social care systems. The current recommended first-choice, second-line treatment in children aged 6 months a...

Background: Phenytoin is the recommended second-line intravenous anticonvulsant for treatment of paediatric convulsive status epilepticus in the UK; however, some evidence suggests that levetiracetam could be an effective and safer alternative. This trial compared the efficacy and safety of phenytoin and levetiracetam for second-line management of...

Background Alternatives to prospective informed consent enable the conduct of paediatric emergency and critical care trials. Research without prior consent (RWPC) involves practitioners approaching parents after an intervention has been given and seeking consent for their child to continue in the trial. As part of an embedded study in the ‘Emergenc...

Background Music is known to have therapeutic benefits and is frequently used in healthcare. For children in emergency settings, it may reduce stress and pain. There is little evidence evaluating the effect of live music in an emergency setting. This innovative study explores the effect of live music on children undergoing a painful procedure in a...

Background Routine measurement of gastric residual volume (GRV) to guide feeding in neonatal and paediatric intensive care is widespread. However, this practice is not evidence based and may cause harm. As part of a feasibility study, we explored parent and practitioner views on the acceptability of a trial comparing GRV measurement or no GRV measu...

Purpose Feelings of loneliness are likely to exacerbate risk of depression in people living with cancer during COVID-19. Design and Methods Five hundred and eighteen people with cancer with data extracted from two waves (2017–19 and April 2020) of the Understanding Society UK dataset participated. Findings An increased risk of depression was obse...

Background Convulsive status epilepticus is the most common neurological emergency in children. Its management is important to avoid or minimise neurological morbidity and death. The current first-choice second-line drug is phenytoin (Epanutin, Pfizer Inc., New York, NY, USA), for which there is no robust scientific evidence. Objective To determin...

Background Key challenges to the successful conduct of The Emergency treatment with Levetiracetam or Phenytoin in Status Epilepticus in children (EcLiPSE) trial were identified at the pre-trial stage. These included practitioner anxieties about conducting research without prior consent (RWPC), inexperience in conducting an ED-led trial and use of a...

Objective Despite little evidence, the practice of routine gastric residual volume (GRV) measurement to guide enteral feeding in neonatal units is widespread. Due to increased interest in this practice, and to examine trial feasibility, we aimed to determine enteral feeding and GRV measurement practices in British neonatal units. Design and settin...

Background In the UK, juvenile idiopathic arthritis is the most common inflammatory disorder in childhood, affecting 10 : 100,000 children and young people aged < 16 years each year, with a population prevalence of around 1 : 1000. Corticosteroids are commonly used to treat juvenile idiopathic arthritis; however, there is currently a lack of consen...

Background Routine measurement of gastric residual volume (GRV) to guide feeding in neonatal and paediatric intensive care is widespread. However, this practice is not evidence based and may cause harm. We explored parent and practitioner views on the acceptability of a trial comparing GRV measurement or no GRV measurement.Methods A mixed- methods...

Background: Routine measurement of gastric residual volume (GRV) to guide feeding in neonatal and paediatric intensive care is widespread. However, this practice is not evidence based and may cause harm. As part of a feasibility study we explored parent and practitioner views on the acceptability of a trial comparing GRV measurement or no GRV measu...

Background The routine measurement of gastric residual volume to guide the initiation and delivery of enteral feeding is widespread in paediatric intensive care and neonatal units, but has little underlying evidence to support it. Objective To answer the question: is a trial of no gastric residual volume measurement feasible in UK paediatric inten...

Background: Choosing trial outcome measures is important. When outcomes are not clinically relevant or important to parents/patients, trial evidence is less likely to be implemented into practice. This study aimed to determine optimal outcome measures for a trial of no routine gastric residual volume (GRV) measurement in critically ill children....

Background Previous research has identified the need for a randomised controlled trial (RCT) evaluating the most appropriate corticosteroid induction regimen to be used for children and young people (CYP) with juvenile idiopathic arthritis (JIA). A recent qualitative study found that parents and CYP understood trial concepts and were able to identi...

Background Previous research has identified the need for a randomised controlled trial (RCT) evaluating the most appropriate corticosteroid induction regimen to be used for children and young people (CYP) with juvenile idiopathic arthritis (JIA). A recent qualitative study found that parents and CYP understood trial concepts and were able to identi...

Background Background Corticosteroids (CS) are widely used for rapid-action or induction treatment in children and young people (CYP) with juvenile idiopathic arthritis (JIA). Given a lack of evidence base on CS induction regimen for CYP with JIA, and since criteria for choosing CS are based on healthcare professional (HCP) preference, further rese...

Objectives: Despite little evidence, the practice of routine measurement of gastric residual volume to guide both the initiation and delivery of enteral feeding in PICUs is widespread internationally. In light of increased scrutiny of the evidence surrounding this practice, and as part of a trial feasibility study, we aimed to determine enteral fe...

Background Corticosteroids (CS) are widely used for rapid-action or induction treatment in children and young people (CYP) with juvenile idiopathic arthritis (JIA). Given a lack of evidence base on CS induction regimen for CYP with JIA, and since criteria for choosing CS are based on healthcare professional (HCP) preference, further research is nee...

Background Previous research has identified the need for a randomised controlled trial (RCT) evaluating the most appropriate corticosteroid induction regimen to be used for children and young people (CYP) with juvenile idiopathic arthritis (JIA) (1). A recent qualitative study found that parents and CYP understood trial concepts and were able to id...

Tume et al.

Aims Challenges to the success of ‘The Emergency treatment with Levetiracetam or Phenytoin in Status Epilepticus in children (EcLiPSE)’ trial included: practitioner anxieties about research without prior consent (‘deferred consent’), including how parents would react to being informed their child had already been randomised into the trial; inexperi...

Background EcLiPSE (Emergency treatment with Levetiracetam or Phenytoin in Status Epilepticus in children) is a randomised controlled trial (RCT) in the United Kingdom. Challenges to success include the need to immediately administer an intervention without informed consent and changes in staffing during trial conduct, mainly due to physician rotat...

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers. Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently ber...

Background Patient recruitment can be very challenging in paediatric studies, especially in relatively uncommon conditions, such as juvenile idiopathic arthritis (JIA). However, involving children and young people (CYP) in the design of such trials could promise a more rapid trajectory towards making evidence-based treatments available. Studies inv...

Objectives We explored children’s views on research without prior consent (RWPC) and sought to identify ways of involving children in research discussions. Design Qualitative interview study. Setting Participants were recruited through a UK children’s hospital and online advertising. Participants 16 children aged 7–15 years with a diagnosis of a...

Relatively little is known about the experiences of Chinese widows, especially those living outside China. This qualitative study examines the experiences of eight Chinese or Hong Kong born widows living in the UK. Using a semi structured approach to interviewing, participants were asked about their lives before, during and after their spousal bere...

Introduction: Current delivery routes and doses of corticosteroid (CS) treatment in juvenile idiopathic arthritis (JIA) are principally based on clinician and patient preference, rather than scientific evidence. A clinical trial is needed in the future to ascertain the most effective routes and doses of CS in JIA. Objectives: To explore families’ e...

An animation to help explain the reasons why consent could not be sought before the child took part in the research.

To evaluate the effectiveness of site initiation visit (SIV) training on healthcare practitioners’ (HCP) confidence in the recruitment of patients to EcLiPSE.

This qualitative study aims to inform the development of a future trial that will evaluate the most effective routes and doses of CS. In particular, we explored treatment preferences, acceptability of randomisation, willingness to participate, and deliberations regarding outcomes.

Background Corticosteroids (CS) are key to achieving rapid disease control in children and young people (CYP) presenting with new or flaring juvenile idiopathic arthritis (JIA). Efficacy, duration of action and side effect profiles vary with the route of administration. Current routes of CS administration are based on physician and patient preferen...

To explore children and young peoples’ experience of living with acute and chronic illness, and the potential impact of frequent emergency department admissions upon their daily lives and well-being

Aims Variations from informed consent (known as deferred consent or research without prior consent-RWPC) enable paediatric critical care research to proceed by allowing consent to be sought after a child has received an investigational intervention. The first UK trials conducted in this setting show high levels of recruitment, yet children and youn...

The aim of the project was to determine the health needs of the local homeless population within Liverpool City Region, and to investigate the extent to which current service provision is addressing the health needs of the local homeless population. The project also aimed to make a set of evidence-based recommendations for local commissioners on th...

Women with postmenopausal bleeding (PMB) are referred for specialist assessment within 2 weeks of presentation to their GP. No research has previously examined women's experiences of expedited referral. This was investigated in the present study using questionnaires (6-item State Anxiety Inventory (6-STAI)) and focus groups. A total of 55 women com...

Background Older adults receive most of their end-of-life care in the community, but there are few published data to guide researchers on recruitment to studies in primary care. The aim of this study was to compare recruitment of patients and bereaved carers from general practices in areas with different research network support, and identify chall...

Providing care that is shaped around the needs of patients, carers, and families is a challenge in the last months of life, as moves between home and institutions may be frequent. Despite this, there have been few studies of end-of-life transitions in the U.K. To explore older adults' experiences as they move between places of care at the end of li...

This study explores the views of older adults who are receiving health and social care at the end of their lives, on how services should be funded, and describes their health-related expenditure. Qualitative interview study. North West England. 30 people aged 69-93 years, diagnosed with lung cancer, heart failure or stroke and judged by health prof...

To understand patients' perspectives on how a diagnosis of a life-limiting illness was first communicated to them. In-depth qualitative interviews with 50 people ranging in age from 30 to 93 years, diagnosed with cancer (31), heart failure (13), stroke (three) or neurological conditions (three) and thought by the responsible health professional to...

This chapter presents an overview of what we currently know about social inequalities in the experience of dying. A review of existing evidence for social variation in premature mortality, cause, and place of death, is followed by consideration of how access to end of life care services may differ with social position. It concludes with a discussio...

Background Transitions between care settings have been associated with poor continuity and quality of care for older people. Move-ments between places of care occur frequently in the months before death, making them an important influence on well-being and health status. People with heart failure may be particularly likely to experience frequent, u...