Conectar
To determine the personal, National Health Service and wider societal resource use in relation to caring responsibilities for carers of people living with non-memory led dementias (NMLDs); and to design a resource use measure (RUM) that can be delivered in the Better Living with Non-memory-led Dementia (BELIDE) randomised controlled trial, part of the Rare Dementia (RD) - TALK research programme.
The first stage was to identify and review any existing RUMs that could be used or adapted to the trial population and setting. If no measures were identified, the second stage was initial informal discussions with healthcare professionals (HCPs) and the programme patient and public involvement representatives to inform the perspective, settings of care and main resource items to develop a new RUM. In the third stage, a first draft of the RUM was tested for content and face validity in a modified Delphi study comprising HCPs and carers. The measure was revised and, in the final stage, piloted in the first 3 months of the BELIDE trial to assess acceptability and feasibility of collecting the economic outcomes and the completeness of data collection. The key drivers of resource use and costs were assessed, and appropriate face validity checks were applied to ensure accurate description of the treatment pathways.
Carers and family of people living with NMLD recruited from Rare Dementia Support members in the UK, and a broad range of HCPs with experience of working with people who have NMLD to capture the different dimensions of experience, grade and skill mix.
In total, 20 people participated in the modified Delphi study, 11 HCPs and 9 carers. Rare Dementia Support groups and 1:1 calls were highly rated, as were general practitioner appointments. The greatest consensus was in the productivity and carer tasks; all caring tasks were highly rated. Healthcare practitioners rated healthcare items as higher importance than carers themselves.
Unpaid carers and HCPs are the experts in the resource impact of caring for someone with NMLD and have been underserved in research to date. This research, as part of preparatory stages of the BELIDE trial, has enabled the timely development of a comprehensive and valid RUM for unpaid carers of people with NMLD.
CRD42022356943.
Providing peer support can benefit youth peer support workers (peers)et by supporting self-determination, recovery and resilience to self-stigma. There is a need to clarify the role of the organisation in providing benefits for peers. We aimed to identify the organisational contexts and mechanisms that result in the creation of healthy workplaces for peers.
Rapid realist review guided by the Realist and Meta-Narrative Evidence Syntheses–Evolving Standards guidelines and Pawson’s iterative approach.
MEDLINE, CINAHL, PsycINFO, ERIC, SocINDEX, Google Scholar and Embase were searched from 1979 to 2025.
We included qualitative and quantitative peer-reviewed studies and grey literature that captured characteristics of organisational practices and employment considerations in youth peer support programmes.
Articles were screened independently by multiple reviewers. Inclusion criteria were adjusted to capture literature on organisational practices, and employment considerations for youth peer support programmes. Data were extracted and analysed retroductively to develop Context-Mechanism-Outcome Configurations (CMOCs).
Five employment-related risks to peer well-being were identified: (1) difficulty entering the job market, (2) lack of role clarity, (3) pressure to live up to ideals, (4) retraumatisation and (5) stigma. Six CMOCs were developed; all focused on the creation of equitable employment and supporting peer development and empowerment were developed.
Community-based mental health organisations can facilitate equitable peer employment through strategies that reduce professional stigma, enhance peer resilience and promote professional and personal development. Policy reform that addresses precarious work conditions is needed to support healthy work environments.
Fetal alcohol spectrum disorder (FASD) is a diagnostic term that describes the neurodevelopmental and physical effects resulting from prenatal exposure to alcohol. Individuals living with FASD can experience lifelong challenges, yet with a diagnosis and sufficient support for the individual and their whānau (families), people can live fulfilling lives. Currently, little is known of the prevalence and impact in Aotearoa, New Zealand (NZ). Our aim is to identify the prevalence and understand the needs of young people living with FASD and other neurodevelopmental disorders in Youth Justice (YJ) residences in Aotearoa, NZ. One study will investigate the prevalence of FASD in this setting. The outcomes of both studies may demonstrate barriers and enablers, as well as strengths and gaps in YJ services of Aotearoa, NZ. The outcomes of both studies may guide reinforcing of current best practices as well as highlight necessary and novel initiatives together providing best support for the children and adolescents and their whānau as well as staff across YJ residences.
Extensive consultation with Māori and Pacific Advisory groups, researchers and experts in FASD and justice settings, individuals living with FASD and YJ staff together informed the development of this study.
Children and adolescents (hereafter young people) aged 10 to 18 years and currently residing in YJ residences are eligible for participation and assessment for FASD through assenting and consenting to provide personal and social histories and completed physical and neuropsychological assessments. The comprehensive FASD histories, screening and assessment will be conducted by a neuropsychologist and paediatrician employing standardised assessment practices and instruments. The team will also collect information from health, education and care and protection records; from the young people themselves; and from their family and staff. The study will reference Whakakotahitanga, the newly released (2024) guidelines for screening and diagnosing FASD in Aotearoa, NZ while also acknowledging the differences imposed under constraints of funding research including, for example, time and money. An individualised report will be prepared for each young person and their whānau. Study data will be analysed with descriptive statistics as appropriate. Our findings will be considered by the Māori and Pasifika advisory groups for framing and culturally secure translation, disseminated with all participating young people, translated to YJ services and staff, government and community neurodiversity sectors. Outcomes will be made available through community hubs, conferences, reports and peer-reviewed journal publications.
The study has received ethical approval from the Southern Health and Disability Ethics Committee (2024 Full 20065). Locality ethical approval has been granted from Oranga Tamariki (Ministry of Children), and a privacy impact evaluation has been undertaken. The findings will be shared through peer-reviewed publication, local and national conferences and with key agencies including Oranga Tamariki.
Functional seizures (FS) are events that resemble epileptic seizures, but are not attributed to brain pathology and are instead thought to be due to psychological factors. A small, multisite, open-label, single-arm, pilot trial of a breathing intervention known as breathing control training (BCT) found it to be safe and effective in reducing seizure frequency in FS. We propose a protocol for a study to confirm these results.
A 24-week, multicentre, individually-randomised, assessor-blinded, two-arm, parallel-group efficacy and acceptability trial of BCT versus control (Befriending) in 220 participants ≥16 years of age with FS. Eligible participants will be randomly allocated to receive two sessions of either BCT or Befriending over a 4-week period. Sessions will be delivered by a respiratory physiotherapist at a clinical care site or via telehealth. They will complete assessments prior to commencing treatment and at 4, 12 and 24 weeks after their initial session of BCT/Befriending. The trial will be conducted alongside treatment as usual. An economic evaluation including cost-utility and cost-effectiveness analyses will be carried out from health sector and societal perspectives.
The study has been approved by The Austin Health Human Research Ethics Committee (HREC/84335/Austin-2022) and the New Zealand Central Health and Disability Ethics Committee (2022 FULL 12324). Findings will be reported to trial participants and consumers; presented at local, national and international conferences; and disseminated by a peer-reviewed scientific journal.
Nurse practitioner-sensitive outcomes (NPSOs) are critical indicators of the quality and effectiveness of nursing care provided to older adults. These outcomes, which include metrics such as falls, pressure ulcers, infection rates, frailty, delirium, length of stay, hospital readmissions, and quality of life (QoL), are essential for assessing the impact of nurse practitioners (NPs) and enhancing patient safety. Despite their importance, the current literature on NPSOs in services for older adults remains limited. This scoping review aims to address this gap by systematically mapping the existing research, identifying key themes, and uncovering areas needing further exploration. By doing so, the authors seek to provide a comprehensive overview that will inform future research directions and contribute to the enhancement of clinical practice in older person services (OPS). This review is important for healthcare providers, policymakers, and researchers who are committed to improving the quality of nursing care and outcomes for older people.
The aim of this scoping review is to map the existing research on NPSOs in services for older adults. This review seeks to identify key themes and gaps in the current literature to guide future research and enhance clinical practice in this area.
The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines were utilised to structure this scoping review.
From initial screening of 3593 manuscripts drawn from seven databases, 66 were deemed eligible for full screen. Five studies met the inclusion criteria and were ultimately selected for data extraction and analysis. The most common outcome measures reported were complications and comorbidities, and QoL.
This review highlights that the reporting of NPSOs in older person care is lacking and requires further attention.
To explore current evidence regarding the provision of palliative care for individuals with very severe to extreme behavioural and psychological symptoms of dementia (BPSD) in a hospital setting.
Scoping review.
The PRISMA-ScR reporting guideline.
The JBI guidelines for scoping reviews were followed. A data extraction form assisted in the identification of key findings via a process of content analysis.
Studies were obtained from bibliographic databases of PubMed, CINAHL, and PsycINFO.
This review included six articles, and nine categories emerged from the findings. Symptom assessment and management, pain assessment challenges, atypical presentation of end-stage dementia, complex prescribing and treatment practices, principles of person-centred care, collaboration; training for health care professionals; emotional impact on staff; and family and caregivers.
This scoping review highlighted a significant gap in the literature regarding palliative care for people living with very severe to extreme BPSD in hospital settings. This review highlighted key differences in the presentation of people with BPSD needing palliative care. There is a need for tailored models of care, specialised training and education for health professionals, families, and carers, and recognition of dementia as a terminal illness.
The results of this review provide valuable insights into the level of understanding about the unique palliative care needs for people experiencing very severe to extreme BPSD, making an important contribution to the planning and development of future models of care.
Mapping the available literature highlights a paucity of research in palliative care for people with very severe to extreme BPSD in hospital settings. There is a need for rigorous research studies and models of care developed and informed by the evidence for this small population necessitating unique care needs.
No patient or public contribution.
Parkinson’s disease (PD) is a common neurodegenerative disease, which has extensive pathology that critically includes the loss of midbrain dopaminergic neurons. This loss leads to debilitating motor features such as bradykinesia and rigidity, as well as some non-motor symptoms. Intracerebral dopamine cell transplants have been explored for many years as a new approach to treating PD and initially used human fetal ventral mesencephalic tissue with inconsistent results, related in part to major logistical challenges in sourcing enough tissue of the right quality and the limited possibilities for quality control and standardisation. Dopaminergic neurons can now be derived reliably from human stem cell sources, which may overcome some of the challenges associated with fetal tissue transplantations.
STEM-PD is a multi-centre, single-arm, dose-escalation, first-in-human advanced therapy investigational medicinal product (ATIMP) trial in Europe using a cell product that consists of dopaminergic neural progenitors derived from the RC17 human embryonic stem cell line. The aim of the study is to assess the safety, tolerability and feasibility of intraputamenal transplantation of this cell product in patients with moderately advanced PD. Eight participants will be recruited from two sites, Skånes University Hospital (Lund, Sweden) and Cambridge University Hospital (Cambridge, UK). The primary outcome of the trial is safety and tolerability, assessed by the number and nature of adverse events and serious adverse events, and the absence of space-occupying lesions on cranial MRI, in the first 12 months following transplantation. Secondary and exploratory outcomes, including clinical measures, changes in anti-Parkinson’s medication and measures of graft survival using positron emission tomography imaging, will be assessed at both 12 and 36 months post-grafting.
Ethical approval was obtained from the Swedish Ethical Review Authority (EPM dnr 2021-06945-01) and South Central - Oxford A Research Ethics Committee (reference 23/SC/0243). Clinical Trial Authorisation was given by the Swedish Medical Products Agency (Dnr: 5.1-2022-57953) and the Medicines and Healthcare products Regulatory Agency for clinical trials authorisation (reference CTA 40773/0001/001-0001). Authorisation for transfer to Clinical Trial Regulation (EU) 536/2014 was given by the Swedish Medical Products Agency (Dnr: 5.1.1-2024-100773). Potential participants will receive verbal and written information about the trial and written informed consent will be obtained prior to enrolment. A lay summary of the results of the trial will be uploaded to the trial website which is publicly accessible. Trial results will be published in peer-reviewed journals.
To explore how Early Career Nurses perceive their preparedness for nursing practice, the teaching and learning experiences, and the role of professional experience placements on their professional development.
A qualitative study using a hermeneutic phenomenological approach.
The study involved 25 Early Career Nurses who participated in follow-up interviews 4 years post-graduation in Australia between 2022 and 2024. Data were collected through semi-structured interviews and analysed using Thematic Analysis.
Three key themes emerged: gaps in preparedness, the power of being embedded and too many balls to juggle. Participants indicated a mixed sense of preparedness with significant gaps in clinical skills. They emphasised the critical role of professional experience placements and mentorship to bridge the gap between theoretical knowledge and practical application. Placements and mentorship opportunities were considered essential to develop confidence and competence for effective nursing practice.
The study highlights the necessity for nursing curricula to address significant gaps in clinical skills, particularly in surgical and emergency nursing. By incorporating more simulation-based learning, interprofessional education and robust mentorship programmes, nursing education can better prepare graduates for the realities of clinical practice. These enhancements will help ease the transition from academic training to clinical practice, reducing reality shock and fostering a more confident, competent and resilient nursing workforce.
Nursing education must integrate more simulation-based learning and interprofessional education opportunities, which are crucial for bridging the gap between theoretical knowledge and practical application, ensuring that graduates are adequately prepared for the demands of clinical practice. Additionally, professional experience placements and mentorship should be prioritised to develop the confidence and competence for effective nursing practice.
This study adheres to the Consolidated criteria for reporting qualitative research guidelines.
No Patient or Public Contribution.
To examine the direct and indirect predictors of thriving at work and its impact on intention to leave the organisation or profession among early career nurses.
A repeated cross-sectional design.
A sub-study of early career nurses as part of an Australian longitudinal follow up study, commenced in 2018, was conducted. The sub-study asked early career nurses between their second and sixth year after graduating to complete a structured online questionnaire assessing thriving at work and several predictor variables. Data were analysed using Pearson's correlation, multiple linear regression, and path analysis.
Among the 67 participants (response rate of 42.9%), thriving at work was positively correlated with occupational hardiness, social support from colleagues, and wellbeing, while negatively correlated with compassion fatigue. Thriving at work and perceived organisational support were the significant predictors of intention to leave the organisation, while perceived organisational support was the only significant predictor of intention to leave the profession.
The importance of strong collegial relationships, compassion fatigue, and improving wellbeing to enhance thriving at work are highlighted. Fostering an environment where employees can thrive is crucial to reduce the intentions to leave an organisation. Relationships with the managers and quality of care provision also play a crucial role in reducing turnover and leave intentions. Perceived organisational support enhances employee wellbeing, thereby reducing turnover intentions. Future strategies should focus on comprehensive support systems to retain nurses in their organisation and the profession.
Enhancing thriving at work and perceived organisational support can reduce early career nurses' intention to leave their organisation. However, job stressors and interpersonal conflicts also influence professional leave decisions.
This study has adhered to the STROBE guidelines.
No Patient or Public Contribution.
To describe telephone-triage nurses' perceptions of their well-being and the system factors that influenced their well-being while conducting telephone-triage for COVID-19 during the pandemic.
This descriptive, qualitative study applied both inductive and deductive analysis to generate themes.
We interviewed a convenience sample of 27 nurses from two health systems about their perceptions of well-being when triaging patient calls about COVID-19 and reasons for those perceptions. Data collection occurred between November 2020 and June 2021. Themes were organised using the National Academies of Science, Engineering and Medicine framework.
Telephone-triage nurses' well-being was significantly impacted by COVID-19. Uncertainty regarding evolving COVID-19 guidance, increased call volumes and difficult patient responses were some of the key work system challenges that impacted nurses' well-being.
Our findings suggest the need to revisit work system factors that impact the well-being of telephone-triage nurses and develop organisational interventions to support nurses to provide optimal care during crisis situations.
Organisational information infrastructure should be bolstered for future pandemic responses to minimise impacts on nurses' well-being. Additionally, leaders need to realign tasks, workflows and workload of telephone triage during pandemic surges to prevent excessive demands on nurses.
This work contributes to understanding telephone-triage nurses' well-being during COVID-19. The increased demands they faced and impact on their well-being point to opportunities for organisational well-being interventions and development of crisis standards for tele-triaging to support nurses during high-stress, crisis situations.
The authors have adhered to COREQ guidelines for reporting.
No patient or public contribution.
Carers of people with non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) face unique challenges. Yet, little evidence-based support and guidance are available for this population. To address this gap in services, we have developed a novel, web-based educational programme: the Better Living with Non-memory-led Dementia programme (BELIDE). BELIDE was co-designed with people with lived experience of non-memory-led dementia and a previous pilot study confirmed its feasibility as an online intervention. This protocol outlines the randomised controlled trial (RCT) to evaluate the clinical and cost-effectiveness of BELIDE.
This is a parallel-group, single-blind, RCT of 238 unpaid caregivers of people diagnosed with PCA, PPA or bvFTD recruited internationally among members of the UK-based organisation Rare Dementia Support. The intervention (BELIDE programme) consists of six structured online educational modules tailored to each phenotype, a virtual onboarding session, real-life practice tasks and up to two follow-up facilitation sessions. The group receiving the intervention will be given access to the programme, while the control group will receive treatment as usual and be placed on a wait-list to receive access to the programme once they complete their participation in the trial. The allocation ratio will be 1:1 stratified by dementia diagnosis and gender. The primary outcome is reduction in caregiver depressive symptoms. Secondary outcomes include stress, anxiety, self-efficacy, quality of life and caregiver-patient relationship quality. Data will be collected online via Qualtrics surveys at baseline, 8 weeks and 6 months post-randomisation. A mixed-method process evaluation with a subgroup of intervention participants will explore barriers and facilitators for engagement. A health economics evaluation will also be conducted to assess cost-effectiveness. If effective, this programme could improve access to caregiver support for non-memory-led dementias by providing scalable, tailored education.
Ethical approval has been granted by University College London Research Ethics Committee (8545/007). The results will be disseminated via peer-reviewed publications, conferences, stakeholder events and open-access resources.
This trial has been registered prospectively on the Clinical Trials registry, first posted on 5 February 2024 under registration number NCT06241287.
Post-intensive care syndrome (PICS) describes a cluster of ongoing symptoms experienced by a large proportion of patients previously admitted to critical care. Despite a large rise in survival following critical care, interventions to support recovery and combat PICS are lacking. It has been suggested that the use of digital tools such as virtual reality (VR) may play a useful role in the development of recovery-supporting interventions. We engaged with people with lived experience of critical care admission to coproduce a VR intervention (ViRtual REality to AiD recoverY post ICU (VR READY)). Here, we present a protocol for the initial feasibility and acceptability testing of this intervention.
This is a single-arm, single-site, non-randomised feasibility trial of VR READY. Up to 25 participants recently admitted to critical care will be recruited to use the VR READY intervention for at least 5 min per day for a period of 14 days. Participants must have capacity to consent and be free from ongoing delirium in order to participate. Outcomes relating to sleep and well-being will be measured at baseline and at day 14 after intervention delivery. The primary outcome is feasibility, which will be assessed according to prespecified criteria. Participants will complete a qualitative interview to assess acceptability of the intervention, trial design and outcomes approximately 1 month after completing the intervention period. No formal statistical analysis of outcomes will be conducted, but these will be summarised descriptively. Interviews will be subjected to reflexive thematic analysis.
This study received a favourable ethical opinion by North-East York Research Ethics Committee (Ref 23/NE/0113) in June 2024. Study results will be disseminated through the peer review literature, ISRCTN registry and directly to participants, which will be facilitated by the study public and patient involvement steering group.
FreshRSS 