Conectar
To explore aspects of interpersonal relationships in palliative care nursing, focusing on confidential conversations between patients and registered nurses (RN).
A qualitative study employing focused ethnography.
Data were collected through unstructured participant observations, field notes and interviews with patients and RN in specialist palliative care. Data were analysed using reflective thematic analysis.
Confidential conversations in palliative care are founded on trust that is fragile and develops dynamically through consistent interactions. Small talk, presence and silence are essential for initiating and maintaining trust and the interpersonal relationship. The environment, patient condition and RN emotional presence and competence shape these conversations. As the relationship evolves, conversations adapt to the patient's changing needs. Missed signals or interruptions can disrupt flow, but the potential for repair remains, allowing for restoration and strengthening of trust and connection.
Confidential conversations in palliative care are grounded in fragile, dynamic trust, necessitating ongoing presence, sensitivity and adaptability from RN. To support these interactions, healthcare environments must prioritise privacy, relational continuity and communication training. Future research should investigate how organisational structures and clinical settings influence confidential conversations.
Healthcare environments should facilitate confidential conversations by ensuring relational continuity and minimising distractions. Communication training that emphasises presence and management of silence can strengthen nurse–patient relationships, enhancing patient care and emotional support.
This study explores key aspects of confidential conversations in palliative care, emphasising trust and emotional sensitivity. It addresses a research gap in palliative care using rare observational methods to deepen understanding of nursing relational aspects. The findings offer practical guidance for enhancing communication and relational skills, informing training and policy development and ultimately, improving emotional support and care.
Findings are reported in accordance with the Consolidated Criteria for Reporting Qualitative Research guidelines.
This study did not involve patient or public participation in its design, conduct or reporting.
Lower gastrointestinal symptoms attributed to colorectal disease are common. Early diagnosis of serious colorectal disease such as colorectal cancer (CRC), precancerous growths (polyps) and inflammation is important to ensure the best possible outcomes for a patient. The current ‘gold standard’ diagnostic test is colonoscopy. Colonoscopy is an invasive procedure. Some people struggle to cope with it and require intravenous sedation and/or analgesia. It is also resource-intensive, needing to be performed in specialist endoscopy units by a trained team. Across the UK, the demand for colonoscopy is outstripping capacity and the diagnosis of colorectal disease is being delayed. A colon capsule endoscope (CCE) is an alternative colorectal diagnostic. It is a ‘camera in a pill’ that can be swallowed and which passes through the gastrointestinal tract, obtaining visual images on the colon. There is now established experience of CCE in the UK. CCE might provide a less invasive method to diagnose colorectal disease if found to be accurate and effective and provide a means by which to increase the National Health Service (NHS) diagnostic capacity.
The aim of this study is to determine the diagnostic accuracy of CCE when compared with colonoscopy in representative and clinically meaningful cohorts of patients. An evaluation of the experiences of CCE for the patient and clinical team and an assessment of cost effectiveness will be undertaken.
We will undertake three research workstreams (WS). In WS1, we shall perform a paired (back-to-back) study. Each participant will swallow the CCE and then later on the same day they will have a colonoscopy. The study has been designed in collaboration with our Patient Advisory Group and as closely mirrors standard care as is possible. 973 participants will be recruited from three representative clinical contexts; suspected CRC, suspected inflammatory bowel disease and postpolypectomy surveillance. Up to 30 sites across the UK will be involved to maximise inclusivity. Measures of diagnostic accuracy will be reported along with CCE completion rates, number of colonoscopy procedures potentially prevented and adverse events, such as capsule retention. A nested substudy of intraobserver and interobserver agreement will be performed. WS2 will develop models of cost-effectiveness and WS3 will evaluate the patient and clinician experience, with reference to acceptability and choice.
The study findings will provide the evidence base to inform future colorectal diagnostic services.
The study has approval from the North East—Tyne and Wear South research ethics committee (REC reference 24/NE/0178, IRAS 331349). The findings will be disseminated to the NHS, National Institute for Health and Care Excellence, other clinical stakeholders and participants, patients and the public.
Radiological imaging is a central facet of the multidisciplinary evaluation of suspected child physical abuse. Current guidelines for the imaging of suspected child physical abuse are often unclear, incomplete and highly variable regarding recommendations on critical questions, thereby risking clinical heterogeneity, unstructured decision-making and missed diagnoses. We, therefore, aim to develop and report an evidence-based and consensus-derived international guideline for the radiological investigation of index and contact children in the context of suspected physical abuse and to ascertain areas of scientific uncertainty to inform future research priorities.
The international guidelines for the imaging investigation of suspected child physical abuse (IGISPA) consensus group includes formal representation from 127 recognised experts across 14 subspecialties, six continents and 32 national and/or international organisations. Participants will be divided into five longitudinal subgroups (indications for imaging, skeletal imaging, visceral imaging, neuroimaging and postmortem imaging) with three cross-cutting themes (radiography, genetics and adaptations for low- and lower-middle-income countries). Each subgroup will develop preliminary consensus statements via integration of current evidence-based guidelines, systematic literature review and the clinical expertise of a multinational group of experts. Statements will then undergo anonymised voting in a modified e-Delphi process and iterative revision until consensus (≥80% agreement) is achieved. Final statements will undergo both internal and external peer review prior to endorsement.
As an anonymous survey of consenting healthcare professionals, this study did not require ethical approval. Experts provided written informed consent to participate prior to commencement of the modified Delphi process. The IGISPA consensus statement and any subsequent guidance will be published open access in peer-reviewed medical journals.
Despite the potential benefits of physiotherapy and physical activity, awareness remains limited among patients with sequela and healthcare professionals. This study aims to explore Danish physiotherapists’ (PTs) perspectives on barriers, facilitators and potential solutions to improve the care of sequelae after cancer in physiotherapy clinics.
This qualitative study used semi-structured interviews with Danish PTs, following a published research protocol and the Criteria for Reporting Qualitative Research checklist. Danish-speaking PTs working in private clinics in Denmark were eligible to participate and were selected via purposive sampling. Online interviews with PTs were conducted in June and July 2022.
A phenomenological approach was employed for data collection and thematic analysis, allowing researchers to set aside preconceptions. Preunderstandings were stated and revisited post-analysis for validation. The interview guide was developed and validated through discussions and pilot testing. A patient panel provided feedback on the interview guide. Interviews were conducted by a trained and experienced PT and transcribed using a standardised key.
Online interviews with 12 PTs were conducted. Five themes were identified: being aware of important physiotherapy competencies, PTs’ basic education and specialisation, patients’ resources, healthcare system and organisation, and sharing knowledge regarding sequelae from cancer and potential treatments. PTs emphasised the need for specialised competencies, emotional resilience and life experience. Patients experienced financial and psychosocial barriers, while systemic issues and poor communication hindered care. PTs suggested public lists of specialised providers and broader dissemination of knowledge to reduce stigma and improve access.
PTs identify clinical and systemic challenges requiring specialisation, improved collaboration and increased awareness to enhance rehabilitation and quality of life for cancer survivors.
Fathers of preterm infants wish to be actively involved and attentive in caring for their children. The positive impacts of paternal caregiving on preterm infants’ cognitive and social development have been recognised. Awareness of the need to support fathers during early parenthood is increasing, but fathers may feel excluded when their infants are in the neonatal intensive care unit. Here, we present the protocol for a study involving the development and national implementation of a complex intervention supporting first-time fathers of preterm infants in early parenthood.
The study adheres to the Medical Research Council framework for complex interventions. A multicentre, prospective, non-blinded, quasi-experimental design will be applied to evaluate the effect of a clinical and technology-based intervention targeting both nurses and the fathers. Outcomes from participants enrolled during the control (2023–2024) and intervention (2025–2026) periods, comprising 295 fathers and their partners, will be compared. Effects on parental confidence, stress, depression and mood and family and reflective functioning as well as infants’ emotional and social development will be assessed. A comprehensive process evaluation will be applied using both qualitative and quantitative methods.
The study has been registered at Clinicaltrials.org [no. NCT0 6 116 747 (The SUPPORTED study – First-time Fathers of Preterm Infants), approved on 3 November 2023]. The Danish Data Protection Agency has approved the study (P-2022–792). The findings will be disseminated through peer-reviewed publications.
To explore frontline decision-making, adaptation, and learning in ambulance care during the evolving COVID-19 pandemic.
Descriptive and interpretative qualitative study.
Twenty-eight registered nurses from the Swedish ambulance services described 56 critical incidents during the COVID-19 pandemic through free-text questionnaires. The material was analysed using the Critical Incident Technique and Interpretive Description through the lens of potential for resilient performance.
The findings were synthesized into four themes: ‘Navigating uncharted waters under never-ending pressure’, ‘Balancing on the brink of an abyss’, ‘Sacrificing the few to save the many’ and ‘Bracing for the next wave’. Frontline decision-making during a pandemic contribute to ethical dilemmas while necessitating difficult prioritizations to adapt and respond to limited resources. Learning was manifested through effective information sharing and the identification of successful adaptations as compared to maladaptations.
During pandemics or under other extreme conditions, decisions must be made promptly, even amidst emerging chaos, potentially necessitating the use of untested methods and ad-hoc solutions due to initial lack of knowledge and guidelines. Within ambulance care, dynamic leadership becomes imperative, combining autonomous frontline decision-making with support from management. Strengthening ethical competence and fostering ethical discourse may enhance confidence in decision-making, particularly under ethically challenging circumstances.
Performance under extreme conditions can elevate the risk of suboptimal decision-making and adverse outcomes, with older adults being especially vulnerable. Thus, requiring targeted decision support and interventions. Enhancing patient safety in ambulance care during such conditions demands active participation and governance from management, along with decision support and guidelines. Vertical communication and collaboration between management and frontline professionals are essential to ensure that critical information, guidelines, and resources are effectively disseminated and implemented. Further research is needed into management and leadership in ambulance care, alongside the ethical challenges in frontline decision-making under extreme conditions.
Findings are reported per consolidated criteria for reporting qualitative research (COREQ).
No Patient or Public Contribution.
Sweden, as many other high-income countries, has adopted guidelines to offer induction of labour at 41+0 gestational weeks to decrease the risk for perinatal death. As more than 20% of the pregnant population reach this gestational age, and along with other contributing factors, induction rates have increased up to 30% in many countries. Both women and care providers have raised the question if outpatient induction could be a convenient, safe and economic alternative, reducing the burden on inpatient care in maternity hospitals. Before introducing outpatient induction into clinical routine, studies need to assure safety for the child and woman as well as efficacy of the method.
A register-based randomised controlled multicentre non-inferiority trial to study if outpatient induction in low-risk inductions is (1) as safe for the child (perinatal composite of mortality and morbidity) and (2) as effective (proportion of vaginal deliveries) as inpatient induction at the hospital. Secondary outcomes are further health outcomes, experiences of pregnant women, partners and care providers, health economics and future pregnancy outcome. Participating women with a singleton pregnancy and unripe cervix between 37+0 and 41+6 gestational weeks planned for low-risk induction will undergo induction of labour with either a balloon catheter or oral misoprostol according to clinical practice at the study site and the woman’s informed choice. Randomisation will allocate women to either outpatient (home or patient hotel) or inpatient induction (standard care). Women undergoing outpatient induction can remain at home for up to 2 days, with an assessment after 24 hours including cardiotocography. Once active labour ensues, all women will receive standard care in the hospital.
The assessment of non-inferiority will involve a two-sided 95% CI and 80% power, requiring randomisation of 8891 women to ensure a probability of at least 0.80 that the upper limit of a two-sided 95.7% CI for a difference in the primary safety outcome is below the non-inferiority margin of 1.5%. 31 of the 45 delivery units in Sweden are currently recruiting. Data will be collected from the electronic case report form and Swedish healthcare registers. Questionnaire and qualitative interview-based studies will be performed to explore experiences of pregnant women, partners and care providers. Additionally, a health economic evaluation will be performed.
The Swedish Ethical Review Authority approved the study (3 June 2020; 2020-02675 with amendments 2021-03045, 2022-00865-02, 2023-01252-02, 2024-00560-02, 2024-2024-04597-02). The Swedish Medical Products Agency approved the study for the medication arm (25 August 2020, EudraCT number: 2020-000233-41; 5.1-2020-60240 with amendments 5.1-2022-73500, 5.1-2023-630). Due to changed regulation, in 2023, the study medication arm was transferred and approved by the European Medicines Agency (23 October 2023, EU CT Number: 2023-507164-39-00; CTIS 5.1.2-2023-099775 with amendments 5.1.2-2024-081916, 5.1.2-2025-036291). The Swedish Medical Products Agency approved the study for the medical device arm (6 April 2021, CIV-ID: CIV-20-09-034712; 5.1-2021-14812 with amendments 5.1-2022-14252, 5.1-2023-596, 5.1-2024-8886, 5.1-2024-55554). The medical device arm was transferred to Regulation (EU) 2017/745 (23 December 2024, 5.1-2025-24242 and amendment 5.1-2025-6050). The study will involve more than 80% of all delivery units in Sweden, which will allow for a smooth implementation of any new routine after the study’s conclusion. Results will be published in relevant scientific journals, presented at national and international conferences, and communicated to participants and relevant institutions through the Outpatient Induction study homepage (www.optionstudien.se), the webinars of the Swedish Network for National Clinical Studies in Obstetrics and Gynecology (
EudraCT No: 2020-000233-41, after transfer to the European Medicines Agency EU CT Number: 2023-507164-39-00; CIV-ID 20-09-034712.
Rare diseases (RD) are collectively common and often genetic. Families value and can benefit from precise molecular diagnoses. Prolonged diagnostic odysseys exacerbate the burden of RD on patients, families and the healthcare system. Genome sequencing (GS) is a near-comprehensive test for genetic RD, but existing care models—where consultation with a medical geneticist is a prerequisite for testing—predate GS and may limit access or delay diagnosis. Evidence is needed to guide the optimal positioning of GS in care pathways. While initiating GS prior to geneticist consultation has been trialled in acute care settings, there are no data to inform the utility of this approach in outpatient care, where most patients with RD seek genetics services. We aim to evaluate the diagnostic yield, time to diagnosis, clinical and personal utility and incremental cost-effectiveness of GS initiated at the time of referral triage (pre-geneticist evaluation) compared with standard of care.
200 paediatric patients referred to one of two large genetics centres in Ontario, Canada, for suspected genetic RD will be randomised into a 1:1 ratio to the intervention (GS first) or standard of care (geneticist first) arm. An unblinded, permuted block randomisation design will be used, stratified within each recruitment site by phenotype and prior genetic testing. The primary outcome measure is time to genetic diagnosis or to cessation of active follow-up. Survival analysis will be used to analyse time-to-event data. Additional measures will include patient-reported and family-reported measures of satisfaction, understanding and perceived test utility, clinician-reported measures of perceived test utility and management impact, and healthcare system utilisation and costs.
This study was approved by Clinical Trials Ontario. Results will be disseminated, at minimum, via peer-reviewed journals, professional conferences and internal reports to funding bodies. Efforts will be made to share aggregated study results with participants and their families.
To identify illegitimate tasks performed by registered nurses (RNs) in surgical care and explore why they perform them through the lens of gender theory and nursing history.
A qualitative study guided by gender theory, nursing history and the Fundamentals of Care framework.
RNs (n = 48) at three surgical wards attended a lecture on gender theory and a lecture on nursing history, each followed by focus group interviews (n = 12) with 6–8 participants. The analysis included two steps: (A) a content analysis of the interviews to identify illegitimate tasks and (B) a gender analysis using Connell's framework and nursing history.
The RNs describe their work situation in clinical practice as fragmented by illegitimate tasks. The results show how this can be explained as induced by gender theory and nursing history, with the main theme RNs support overall patient care and work climate at the cost of nursing care—a behaviour explained by gender theory and nursing history, presented in four categories: (1) performing administrative tasks and information processing outside the nursing profession, (2) maintaining a pleasant workplace, (3) being constantly available, facilitating and compensating for physicians and (4) backing up nursing assistants.
Contemporary RNs frequently utilise their resources to carry out a wide range of illegitimate tasks. The findings illustrate that RNs remain influenced by their history and still integrate traditionally female-associated tasks and behaviours into the workplace, often without conscious awareness. This knowledge can be used to understand why RNs perform illegitimate tasks without being asked to do so. Primarily, managers and also RNs must consider their complex situation from this perspective to implement systematic organisational changes that ensure patients receive the nursing care they need.
There is a global shortage of registered nurses (RNs). Patients suffer from missed nursing care. RNs describe their work as fragmented, with frequent interruptions and illegitimate tasks they feel expected to prioritise, even if not prompted by routines or requests. RNs are influenced by nursing history, integrating traditionally female-associated tasks and behaviours into the workplace, often subconsciously. When nurse managers and RNs become aware of these problems, it can pave the way for change, which can free up nursing resources and improve patient care. By becoming aware of what constitutes illegitimate tasks and understanding why nurses perform them, organisational changes can be made to fully utilise RNs' competencies. The findings point to a systemic issue that calls for strategic leadership from managers to drive substantive change.
If a person is in diabetes remission, even if only for a short time, this reduces the risk of later diabetes complications and lowers healthcare costs. A recent study shows that long-term remission of type 2 diabetes can be achieved through calorie restriction using total diet replacement. However, this intervention involves support through face-to-face meetings every 2 to 4 weeks over a 2-year period, which is not feasible in routine care with limited resources. Therefore, we have developed an eHealth programme to help patients achieve diabetes remission through calorie restriction in a cost-effective manner. Our primary hypothesis is that an eHealth programme will be non-inferior to face-to-face meetings in helping patients with type 2 diabetes achieve remission through caloric restriction. Our second hypothesis is that eHealth support will be more cost-effective than face-to-face support.
The eHealth DIabetes remission Trial is a multicentre, two-arm, non-inferiority, open-label, randomised controlled parallel group trial with blinded endpoint assessment conducted at two centres in Sweden. The study duration is 2 years. People with type 2 diabetes (≤6 years duration) use total diet replacement (approximately 900 kcal/day) with the aim of losing 15 kg and achieving diabetes remission. Participants are randomly assigned to either the eHealth support group or the face-to-face support group. The treatment programme to achieve and maintain weight loss is the same in both groups, but the method of support differs between the groups. The primary outcome is haemoglobin A1c (HbA1c) after 1 year. The secondary outcome is HbA1c at 6 months and 2 years. Other important secondary outcomes are diabetes remission rate, body weight and cost-effectiveness. The latter is assessed using the incremental cost per quality-adjusted life-years gained.
The study was approved by the Swedish Ethical Review Authority (Dnr 2022-02242-01, 2023-03707-02). The results will be published in peer-reviewed scientific journals and discussed at national and international conferences and with patient organisations.
ClinicalTrials.gov (NCT05491005).
Acute low back pain (LBP) is a prevalent condition with various non-surgical treatment options, yet no comprehensive network meta-analysis has systematically compared their relative efficacy for pain and disability. This study aims to fill that gap by synthesising available evidence on the efficacy of different types of non-surgical interventions for acute LBP, such as various medications, manual therapies and education-based therapies. Our coprimary objectives are to (1) compare each active treatment to an inert reference for measures of LBP and related disability and (2) rank the efficacy of treatments.
We will conduct a systematic search across multiple databases, including grey literature, to identify randomised controlled trials evaluating non-surgical treatments for acute LBP. Eligible studies must report on pain and/or disability outcomes in adults. The risk of bias will be assessed using the Risk of Bias tool, and the certainty of evidence will be graded using CINeMA (Confidence in Network Meta-Analysis). We will use a frequentist network meta-analysis to pool standardised mean differences in pain and disability, employing random-effects models to account for heterogeneity. A qualitative analysis will assess study characteristics and transitivity, while a quantitative analysis will evaluate efficacy and inconsistency. Results will be presented using network geometry, p-scores, forest plots, funnel plots, Egger’s test, Q-statistics and league tables to visualise both direct and indirect evidence and to identify potential biases.
This review protocol does not involve any primary research with human participants, animal subjects or medical record review. Consequently, this work did not require approval from an institutional review board or ethics committee. Results will be submitted to a peer-reviewed journal and presented at conference(s). De-identified data will be made available in a public repository.
To describe the prevalence of cardiovascular disease (CVD) at the time of diagnosis of adult-onset type 1 (T1D) and type 2 (T2D) diabetes, in a recent cohort and compare to a previous cohort from the same region. Further, to explore factors influencing the prevalence of pre-existing CVD, including age, sex, body mass index (BMI) and C-peptide; in the later cohort also heart failure, hyperlipidaemia, tobacco use and physical activity.
Two prospective cross-sectional cohort studies compared.
All primary health care centres and hospitals in Kalmar and Kronoberg counties in Southeastern Sweden.
Adults with newly diagnosed T1D or T2D (classified by combination of islet antibodies and C-peptide) in 1998–2001 and 2016–2017.
Prevalence of hypertension and CVD at diagnosis of diabetes, and associations with beta-cell function, in two cohorts collected 15 years apart. Further, to explore factors influencing the prevalence of hypertension and CVD, and level of C-peptide.
In patients with newly diagnosed T2D, mean age-at-onset had decreased (66±14.1 years vs 63±12.6, p≤0.001) and mean BMI had increased (29.0±5.4 vs 31.4±5.8 kg/m2, p≤0.001). Prevalence of pre-existing myocardial infarction had decreased in both T1D (18% vs 7%, p=0.03) and T2D (25% vs 11%, p≤0.001). Pre-existing hypertension had increased in both T1D (23% vs 40%, p=0.01) and T2D (44% vs 61%, p≤0.001). C-peptide level was lower and was associated with several cardiovascular conditions in newly diagnosed T2D in 2016–2017 (p=0.048 p≤0.001).
Patients with newly diagnosed T2D were younger, with higher BMI, compared with 15 years earlier, a challenge for diabetes care. Prevalence of pre-existing myocardial infarction had decreased notably, in line with, but still less than in the general population; while pre-existing hypertension had increased, in both diabetes types. C-peptide was associated with several cardiovascular conditions in newly diagnosed T2D in the recent cohort, which warrants further investigation.
Despite an increasing amount of research related to gender-affirming treatment (GAT) outcomes among transgender and gender-diverse (TGD) people (ie, people who experience discomfort or distress in the misalignment between their gender and sex assigned at birth) in recent years, the evidence base for current recommendations is suboptimal. One contributing factor is the heterogeneity in the outcomes and outcome measures used. This study seeks to address this challenge by developing a foundational core outcome set (COS) to be used for TGD adults receiving GAT in Sweden.
Recommendations from the Core Outcome Measures in Effectiveness Trials initiative will be used to address this aim in four phases. Phase 1, an umbrella review of peer-reviewed literature and international guidelines in GAT will be conducted to identify relevant outcomes. In phase 2, we will solicit input from TGD individuals through the review of patient and interest organisations’ reports and an anonymous survey to identify outcomes of personal significance. In phase 3, using the Delphi method, 2–3 rounds of assessment will be conducted where researchers, healthcare professionals, policy-makers and TGD adults rate the identified outcomes by perceived importance. In phase 4, a consensus meeting will convene representatives from all stakeholder groups to finalise the COS.
The results of this study will consist of a COS for GAT regarding TGD adults in Sweden. Participant survey responses will be evaluated using interpretive analysis to identify core outcomes. During each of the Delphi rounds, Likert-type scale ratings will be aggregated for outcomes to advance or be eliminated in each round.
The study has received ethical approval by the Swedish Ethical Review Authority (Umeå medicine department, Registration number: 2024-04672-01). The results of this study will be published open-access and disseminated through TGD interest organisations and a Swedish research network for gender dysphoria.
COMET registration number 3223.
To explore the views of health care professionals involved in initiatives that have led to successful research-related roles for nurses and midwives working in community settings.
A sequential mixed-methods study.
Between December 2022 and January 2023 a survey was completed by health care professionals with relevant experience of successful research-related initiatives for nurses and midwives in community settings. Survey responses were categorised into low, medium or high-priority examples of productive practice. Nineteen of the twenty responders who provided high-priority examples were interviewed between May and July 2023. The research capacity development for impact framework underpinned data collection and analysis. Data were thematically analysed using the framework method.
The seven themes of the research capacity development for impact framework: leadership and sustainability, skills and confidence building, infrastructures, linkages and collaborations, ownership and responsibilities, actionable dissemination and co-production were identified as important features of successful research-related roles in community settings. A new cross-cutting theme of trust and relationships was generated. The initiation, continued growth and ambition continuum guided the development of the planning change and features of success template.
This study highlighted the key features that matter when planning change and developing research-related roles for nurses and midwives in community settings.
Study findings have the potential to inform policy and practice for organisations focused on developing research capacity and capability in community settings.
This study adhered to the COREQ reporting guidelines.
No patient or public involvement.
To estimate the prevalence of autism among adults living in Canada.
A Monte Carlo simulation modelling approach was employed. Input parameters included adult population estimates and mortality rates; autism population all-cause mortality risk ratios; and autism prevalence estimates derived from child and youth data due to the lack of adult data. This approach was executed through 10 000 simulations, with each iteration generating a distinct data scenario. Prevalence estimates were reported as the mean with the 2.5th and 97.5th percentiles, corresponding to a 95% simulation interval (SI).
Where possible, Canadian data sources were used, including the 2019 Canadian Health Survey on Children and Youth and Statistics Canada mortality rates and population estimates.
National prevalence estimates of autistic adults living in private dwellings in Canada, with variations in prevalence by sex at birth and province/territory considered.
The findings suggest the prevalence of autism among adults in Canada to be 1.8% (95% SI 1.6%, 2.0%). National prevalence estimates by sex at birth were 0.7% (95% SI 0.6%, 0.9%) for females and 2.9% (95% SI 2.6%, 3.2%) for males. Provincial/territorial estimates ranged from 0.7% in Saskatchewan (95% SI 0.3%, 1.3%) to 3.6% in New Brunswick (95% SI 2.4%, 5.1%).
The limited availability of data on autistic adults constrains our ability to fully understand and address their unique needs. In this study, autism prevalence was estimated based on diagnosed cases, which excludes individuals without a formal diagnosis. Additionally, other factors such as data availability and methodological assumptions may influence the modelling of prevalence estimates. As a result, our findings should be interpreted within the context of these limitations. Nevertheless, this study provides a valuable reference point for understanding autism prevalence among adults in Canada.
To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial.
We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1:1 allocation ratio, using convergent mixed methods.
Home-based care without 24/7 paid care provision, in three UK sites.
Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before the approach, including a known history of substance abuse or carer ability to be trained to competency.
Intervention-group carers received training by local nurses using a manualised training package.
Quantitative data were collected at baseline and 6–8 weeks post-bereavement and via carer diaries. Interviews with carers and healthcare professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures.
The secondary outcome measure was time to symptom relief, calculated using data items from the carer diary, after the patient had died.
In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting >30% of eligible dyads. The expected recruitment target (50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced (30% (6/20) usual care and 80% (16/20) intervention). The feasibility criterion of >40% retention was, therefore, considered not met. A total of 12 carers (intervention, n=10; usual care, n=2) and 20 healthcare professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The intervention group had a considerably shorter time to medication administration than the usual-care group (median time to administer medication in intervention=5 min, usual-care=105 min). Intervention group carers felt confident in administering medication. Healthcare professional support was sought by intervention group carers in 24 out of 147 (16.3%) medication administration entries. The context of the feasibility study was not ideal, as district nurses were overstretched, unfamiliar with research methods and possibly not in equipoise. A disparity in readiness to consider the intervention was demonstrated between carers, who were uniformly enthusiastic, and healthcare professionals who were not. Findings confirmed methodological and ethics issues pertaining to researching the last days of life care.
The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring healthcare professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial.
This study explored the experience of stigma and access to healthcare by persons with long COVID from the majority Dutch and two ethnic minority populations (Turkish and Moroccan) living in the Netherlands.
This was a cross-sectional qualitative study that employed inductive and deductive thematic approaches to data analysis using MAXQDA.
Between October 2022 and January 2023, 23 semi-structured interviews were conducted with participants of Dutch, Moroccan and Turkish ethnic origins with long COVID living in the Netherlands. Participants were men and women aged 30 years and above.
Guided by the concepts of stigma and candidacy, the findings are structured according to the broader themes of stigma and access to care. The findings show that people with long COVID suffer self and public stigma resulting from the debilitating illness and symptoms. Especially among Turkish and Moroccan ethnic minority participants, strong filial obligations and gendered expectations of responsibility and support within their communities further worsen self-stigma. This experience of stigma persisted within healthcare where lack of information and appropriate care pathways led to feelings of frustration and abandonment, especially for participants with pre-existing health conditions which further complicate candidacy. Under the access to healthcare theme, the findings show multiple challenges in accessing healthcare for long COVID due to several multifaceted factors related to the various stages of candidacy which impacted access to care. Particularly for Turkish and Moroccan ethnic minority participants, additional challenges resulting from limited access to information, pre-existing structural challenges and experience of stereotyping based on ethnicity or assumed migrant identity by health professionals further complicate access to health information and long COVID care.
The findings call for urgent attention and research to identify and coordinate healthcare for long COVID. There is also a need for accessible, informative and tailored support systems to facilitate patients’ access to information and care pathways for long COVID. Providing tailored information and support, addressing the various barriers that hinder optimal operating conditions in healthcare and leveraging on social networks is crucial for addressing stigma and facilitating candidacy for persons with long COVID towards improving access to care.
Over half of children and adolescents with attention-deficit/hyperactivity disorder (ADHD) have difficulties with emotion dysregulation (EDR) and/or sleep, yet the interrelations between emotional regulation and sleep are not well-characterised in this population. This systematic review will address the relationship between these difficulties and investigate whether specific aspects of EDR are more strongly related to sleep problems in youth with ADHD.
We will adhere to the Preferred Reporting Items for Systematic Reviews and Meta-analysis guideline for systematic reviews. A wide set of electronic databases will be searched for peer-reviewed quantitative studies investigating the relationship between EDR and sleep in children and adolescents (ages 5 to 18 years) with ADHD. In addition, the reference list of all studies will be searched for other relevant studies, and Scopus will be used to search for citations of the included studies. We will also contact experts in the field to request published and unpublished studies. The primary outcome will be the effect size of the relationship between EDR and sleep in children and adolescents with ADHD. We will look at EDR and sleep broadly and also consider the multifaceted nature of both terms. Secondary outcomes will include which facets of EDR and sleep have been measured and how they have been measured, developmental differences between children and adolescents with ADHD and how—and the extent to which—studies controlled for the use of CNS medications and cooccurring disorders in their study design and/or statistical analyses. The quality and risk of bias of the included studies will be assessed using the Mixed Methods Appraisal Tool.
This protocol is for a review of studies and does not involve any new data collection and therefore does not need ethical or human subjects approval. The results will be presented at international conferences and in a peer-reviewed journal.
CRD42024612984.
To identify facilitators and barriers to fit note certification among nurses, occupational therapists, pharmacists and physiotherapists (NOPPs), and identify ongoing training needs.
An online survey informed by the Theoretical Domains Framework (TDF) was used to gather data from NOPPs to identify implementation barriers and personal, social and environmental influences on fit note certification.
Data were analysed using descriptive statistics. Mean TDF domain scores were calculated (mean scores ≤3.5 indicated barriers, ≥5 indicated facilitators). Free-text data were thematically analysed using the TDF.
United Kingdom.
The survey was completed by 198 respondents: physiotherapists (n=66, 33%), occupational therapists (n=49, 25%), nurses (n=44, 22%), pharmacists (n=39, 20%).
Only 47 (24%) of survey respondents had certified fit notes; 66 (37%) had completed training, most pharmacists had done neither. TDF analysis indicated three barriers: 1) ‘skills’ (being able to certify, review and practice completing fit notes) (mean=3.32, SD=0.75, 95% CI 1.84, 4.80); 2) ‘goals’ (the level of priority given to fit note completion) (mean=3.22, SD=0.51, 95% CI 2.21, 4.22); 3) ‘memory, attention and decision processes’ (disagreeing with the statement: ‘certifying fit notes is something I do automatically’) (mean=2.73, SD=0). Free-text comments suggested that low ‘skills’ rates may be due to lack of opportunity to do training. The low priority afforded to completing fit notes, which was not done automatically as part of their role, may reflect the lack of organisational policies/guidelines or priorities.
The only facilitator identified was ‘belief about consequences’ (mean=5.74, SD=0.12, 95% CI: 5.50, 5.98). Participants believed that certifying fit notes was useful and worthwhile.
Legislation allowing NOPPs to undertake fit note certification does not appear to have been successfully implemented. Further resources are required to provide NOPPs with the necessary skills/confidence (e.g., via training) to certify fit notes, supporting more patients to return to and remain in work.
Loop ileostomy and loop colostomy are both used to form a protective stoma after anterior resection. Evidence regarding which of these two procedures is superior is lacking. Furthermore, no studies comparing changes in the microbiome after loop ileostomy or loop colostomy exist.
This multicentre, open-label, superiority, individually randomised controlled trial will include patients who undergo anterior rectal resection with primary anastomosis with a protective stoma. The exclusion criteria are patients who already have a stoma, technical inability to create either type of stoma, aged
The Ethics Committee of Helsinki University Hospital approved the study (approval number 4579/2024). The findings will be disseminated in peer-reviewed academic journals.
ClinicalTrials.gov, NCT06650085, registered on 20 August 2024. Protocol version: Version 3.0, dated 17 April 2025.
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