In this final editorial of our group of four, we take up the challenge of thinking about radical reform of doctoral education. We contend that without decisive action, nursing risks losing its capacity to shape the future of healthcare. Therefore we suggest there is a need for radical reform of doctoral education, focusing on three key areas.
To explore how well the primary care system in Scotland works for adults with intellectual disabilities (ID), using the rate of unplanned hospital admissions for ambulatory care sensitive conditions (ACSC) as a proxy indicator. As part of this, to investigate those rates and rate ratios among adults with ID and without ID, adjusting for the prevalence of a given ACSC in each population. The secondary aim was to explore deaths due to ACSC among the ID and no-ID populations.
A population-based retrospective cohort data linkage study of adult respondents to Scotland’s 2011 Census. Self-reported or proxy-reported ID status from the Census was linked to hospital admissions data and deaths data. The cohort was followed until the end of 2019. The prevalence of ACSCs in each population was calculated from aggregate-level data published by the National Health Service, as it was not possible to use the linked dataset for this purpose.
Whole population of Scotland.
People aged 18+ on census day (27 March 2011), including all adults with ID (n=16 840) and a 15% randomly selected comparator sample of adults without ID (n=566 074).
Crude and age-sex standardised incidence rates and ratios; cumulative incidence; prevalence ratios. The exposure was ID status, and the outcomes were (1) unplanned ACSC hospital admission, (2) death with an ACSC condition listed as the main cause on the death certificate and (3) death with an ACSC condition listed as one of the causes on the death certificate.
Adults with ID under the age of 55 had only a slightly higher risk of an unplanned ACSC hospitalisation than their general population counterparts (standardised incidence ratio 1.11; 95% CI 1.03 to 1.20). After adjusting for different ACSC prevalence in ID and non-ID cohorts, this difference in risk disappeared. These findings contrast with existing evidence from England, where a much higher unadjusted risk of unplanned ACSC hospitalisations was found among people with ID. Adults with ID had a higher risk of dying due to ACSC than adults without ID (standardised mortality ratio 2.54; 95% CI 2.19 to 2.95).
Our findings on unplanned ACSC hospitalisations suggest that the primary care system in Scotland appears to be similarly effective for adults with ID than for adults without ID. However, the higher risk of dying from ACSC among people with ID suggests that this system is less effective for people with ID. Future research should investigate this tension and aim to understand why the operation of the primary healthcare system seems to be worse with regards to ACSC mortality than with regards to unplanned ACSC hospitalisations.
The extent to which the analysis of the state of play of doctoral education and suggested ways forward are seen as being radical is of course dependent on the context within which nursing research programs currently exist. We are aware that no one size fits all contexts, but we are also aware of a critical need to challenge dominant perspectives and practices and work toward a radical repositioning of the nursing PhD. At a time when the narrative of nursing shortages is pervasive, we need to be positioning nursing research and researchers at the heart of the solution. Without a radical reconsideration of how we build sustainable research teams, the opportunity will bypass us. The special issue on doctoral education deliberately set out to be disruptive, to surface critical questions and trigger a conversation that needs to be had. We are open to continuing this conversation.
To translate, culturally adapt and validate the first Spanish version of the Person-centred Practice Inventory-Care (PCPI-C) instrument.
Cross-cultural adaptation and psychometric validation.
Two-phase research design: (1) the PCPI-C's translation and cultural adaptation from English to Spanish following the ‘Translation and Cultural Adaptation of Patient-Reported Outcomes Measures-Principles Guide of Good Practice’ tool; and (2) a cross-sectional quantitative survey to assess the Spanish version's psychometric properties.
A sample of 200 patients participated to obtain the PCPI-C's Spanish version. No significant issues arose during the translation process or the consulting sessions. No item exhibited an inadequate value following adjustment via the weighted kappa index (−scale-level content validity average of 0.95 for clarity and 0.97 for relevance). Psychometric evaluation revealed acceptable internal consistency (Cronbach's alpha from 0.67 to 0.84) and strong construct validity. Exploratory and confirmatory factor analyses supported a five-dimensional structure consistent with the domain Person-Centred Processes. Fit indices improved after model refinements, achieving CFI = 0.92, SRMR = 0.05 and RMSEA = 0.07. This study's observed psychometric properties confirm that the PCPI-C's Spanish version retains the original instrument's theoretical integrity, while showing strong reliability and validity in the new context.
The PCPI-C's Spanish translation was psychometrically valid when tested with Spanish patients, thus providing a culturally appropriate, psychometrically sound tool to evaluate Spanish-speaking patients' perception of person-centred care.
This study provides a validated instrument that allows for the assessment of person-centred practice in Spanish-speaking clinical environments. It enables healthcare professionals to measure patients' perceptions, track the implementation of person-centred principles and supports international comparative studies, contributing to the development of more ethical and responsive models of care.
Patients participated in cognitive consultations and completed the survey for psychometric testing, ensuring that the translated items were understandable, culturally appropriate and reflective of their experiences of person-centred care.
This article investigates school vaccination for adolescents with intellectual and developmental disability through the lens of person-centred care principles.
This is a theoretical framework analysis in which qualitative interview data were mapped to the principles of a Person-Centred Practice Framework.
Data were drawn from Vax4Health, an empirical study that aims to improve vaccination uptake and experiences for adolescents with disabilities.
Our four-step process included: identifying elements of the school vaccination programme that relate to the Framework domains; mapping programme capacities and challenges by each domain; identifying key factors influencing person-centredness; and synthesising these key influencing factors into three themes.
We extrapolated three themes: (1) Parents and students expressed strong support for the programme, but there is potential to enhance their participation in vaccination decision-making processes. (2) Nurses bring high levels of motivation, clinical experience, empathy and creativity to vaccinate students, but opportunities remain to enhance disability-specific training and knowledge of individual students' needs. (3) Special schools are committed to supporting families and facilitating the programme, but limited resourcing and unclear responsibilities present challenges that need addressing. We discuss how these themes relate to the five domains of the Framework. Key considerations for vaccination programme improvement towards a more person-centred approach are highlighted.
Applying the Framework to the findings of the Vax4Health study identified a range of opportunities to improve person-centred school-based vaccination for adolescents with IDD. Future research could involve engagement with all stakeholders to co-design interventions aimed at applying person-centred care principles to vaccinating students with IDD.
The findings from this analysis could be used to inform future implementation research into person-centred approaches to school vaccination aiming for positive outcomes for adolescents with IDD, their families and schools and health professionals.
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.
To detail the development of the Canadian National Questionnaire on Overdose Monitoring (CNQOM), a questionnaire aimed at assessing the perspectives of key stakeholders towards elements of overdose prevention interventions—supervised consumption sites (SCSs) and overdose hotlines and applications (ORHAs).
Cross-sectional survey.
Canadian health system.
English or French speaking adults from four key informant groups: people who use substances (PWUS), health professionals, emergency responders and the general public.
Test–retest reliability of CNQOM items.
A novel questionnaire was developed. Item development followed a standard approach, with face validity verified by representatives from the four informant groups. Input from experts in harm reduction and addiction medicine enhanced content and face validity of the questionnaire. A rigorous response validation approach was undertaken to ensure respondents were human and from Canada. Test–retest reliability items were assessed using Spearman’s rank correlation, Wilcoxon rank-sum test and Cohen’s kappa.
After data cleaning and response validation, 4445 valid responses were obtained from the four key informant groups. Respondents represented a range of sociodemographic backgrounds and housing scenarios from all provinces and territories in Canada. Test–retest reliability was assessed using a small subsample of 142 participants (primarily from general public informants). Questionnaire items demonstrated slight to substantial stability in responses (kappa coefficients: 0.15–0.58; Spearman’s r: 0.08–0.66).
The CNQOM is the first online questionnaire in Canada designed to capture perspectives and attitudes towards specific elements of SCSs and ORHAs among diverse key informant groups. Our questionnaire was administered to a large, geographically diverse sample and designed to capture the perspectives of four key informant groups. Lower than expected test–retest reliability may be explained by lack of participant familiarity with SCS and especially ORHAs and the impersonal nature of the instrument content among some respondents. Future work will elucidate key informant perspectives on these services based on the data.
To understand the current evidence base regarding holistic nursing assessments performed by registered nurses in residential aged care homes in Australia, and identify the gaps in knowledge and potential areas for future research.
A scoping review informed by JBI guidelines and the PRISMA extension for Scoping Reviews.
The electronic databases Medline, EMBASE, CINAHL, Scopus and ProQuest Central were searched, alongside citation chaining and manual journal searches. Limits of English language and publication after the year 2000 were applied. Studies were screened against pre-defined eligibility criteria. Data were extracted and analysed using descriptive statistics and a narrative synthesis.
A total of 3987 studies were identified, of which 28 were categorised as comprehensive or multimodal assessment programmes, standalone assessment tools or assessment infrastructure papers. Key outcomes described included staff factors and resident emergency department transfers or hospitalisations. The key feature of existing nursing assessments across studies was education, which was generally associated with improved staff knowledge, confidence and efficiency. Apart from this, there was large heterogeneity among assessment interventions with inconsistent effects. Few studies focused on residents with dementia or palliative care needs.
There is currently no standardised, systematic approach to the holistic assessment of residents by registered nurses in Australia. This gap in assessment is especially evident for residents with dementia or palliative care needs.
This research highlights the need to develop standardised holistic nursing assessments to bridge this gap in practice.
No Patient or Public Contribution.
To develop an updated core dataset for acute stroke care in Ireland, informed by international audit benchmarking and national stakeholder consensus, for integration into the Irish National Audit of Stroke (INAS).
Scoping review and three-round Delphi process.
Medline Ovid, Embase, CINAHL EBSCOhost, Google Scholar, audit websites and grey literature (2010–2024). Additional audit documentation was obtained via direct author contact.
National stroke audits or registries with a country-wide scope, ≥1 year of continuous data collection and active in 2021 were eligible. Only audits covering acute stroke care were included in this study phase. All records were screened for inclusion.
Audit documentation (data dictionaries, item definitions and contextual metadata) was retrieved from eligible audits. Acute stroke care items were extracted, charted and benchmarked against existing INAS items and each other to identify commonalities and gaps. Frequently collected international items (appearing in ≥4 audits/registries) were shortlisted. A three-round Delphi process with 24 national stakeholders (clinicians, nurses, allied health professionals, researchers, policymakers and patient representatives) was conducted to audit and refine the dataset through structured, anonymised item rating, iterative feedback and consensus-building discussions.
Twenty-one eligible international stroke audits/registries were identified, yielding ~4500 audit items. Benchmarking against existing INAS items (n=103), frequently collected international items (n=97) and expert-suggested items (n=22) informed the Delphi consultation. The final dataset expanded INAS by 18 items, totalling 86 acute care and 35 thrombectomy-specific items. New additions included stroke-related complications and risk factor documentation.
This structured, consensus-led process resulted in an internationally benchmarked, stakeholder-informed core dataset to enhance standardised stroke auditing in Ireland. The expanded dataset supports enhanced clinical monitoring, quality improvement and health system planning. This approach may inform audit development and research efforts in other contexts.
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.
To canvas the contemporary contextual forces within the Australian residential aged care sector and argue for new research and innovation. There is a pressing need to provide systematised, high-quality and person-centred care to our ageing populations, especially for those who rely on residential care. This paper advances a warrant for establishing a new systematic framework for assessment and management that serves as a foundation for effective person-centred care delivery.
Position paper.
This paper promulgates the current dialogue among key stakeholders of quality residential aged care in Australia, including clinicians, regulatory agencies, researchers and consumers. A desktop review gathered relevant literature spanning research, standards and guidelines regarding current and future challenges in aged care in Australia.
This position paper explores the issues of improving the quality and safety of residential aged care in Australia, including the lingering impact of COVID-19 and incoming reforms. It calls for nurse-led research and innovation to deliver tools to address these challenges.
The paper proposes an appropriate holistic, evidence-based nursing framework to optimise the quality and safety of residential aged care in Australia.
This study did not include patient or public involvement in its design, conduct, or reporting.