Conectar
To explore the challenges experienced by people with intellectual disability, their carers and health and social care professionals when using and managing medication.
A synthesis of qualitative research using meta-ethnography.
We searched seven databases: MEDLINE, Embase, CINAHL, Science, Social Science and Conference Proceedings Citation Indices (Web of Science), Cochrane Library, PsycINFO and Proquest Dissertations and Theses from inception to September 2022 (updated in July 2023).
We included studies exploring the challenges and perceptions of people with intellectual disability, their carers and health and social care professionals regarding medication management and use.
We reviewed 7593 abstracts and 475 full texts, resulting in 45 included papers. Four major themes were identified: (1) Medication-related issues, (2) navigating autonomy and relationships, (3) knowledge and training needs and (4) inequalities in the healthcare system. We formulated a conceptual framework centred around people with intellectual disability and described the interconnectedness between them, their carers and health and social care professionals in the process of managing and using medication. We identified challenges that could be associated with the person, the medication and/or the context, along with a lack of understanding of these challenges and a lack of capability or resources to tackle them. We developed an overarching concept of ‘collective collaboration’ as a potential solution to prevent or mitigate problems related to medication use in people with intellectual disability.
The effective management of medication for people with intellectual disability requires a collaborative and holistic approach. By fostering person-centred care and shared decision-making, providing educational and practical support, and nurturing strong relationships between all partners involved to form a collective collaboration surrounding people with intellectual disability, improved medication adherence and optimised therapeutic outcomes can be achieved.
CRD42022362903.
Participation in physical activity (PA) is a cornerstone of the secondary prevention of stroke. Given the heterogeneous nature of stroke, PA interventions that are adaptive to individual performance capability and associated co-morbidity levels are recommended. Mobile health (mHealth) has been identified as a potential approach to supporting PA post-stroke. To this end, we used a Sequential Multiple Assignment Randomised Trial design to develop an adaptive, mHealth intervention to improve PA post-stroke – The Adaptive Physical Activity programme in Stroke (TAPAS) (Clinicaltrials.Gov NCT05606770). As the first trial in stroke recovery literature to use this design, there is an opportunity to conduct a process evaluation for this type of adaptive intervention. The aim of this process evaluation is to examine the implementation process, mechanism of change and contextual influences of TAPAS among ambulatory people with stroke in the community.
Guided by the Medical Research Council Framework for process evaluations, qualitative and quantitative methods will be used to examine the (1) implementation process and the content of TAPAS (fidelity adaptation, dose and reach); (2) mechanisms of change (participants’ response to the intervention; mediators; unexpected pathways and consequences) and (3) influence of the context of the intervention. Quantitative data will be presented descriptively, for example, adherence to exercise sessions. Qualitative data will be collected among TAPAS participants and the interventionist using semi-structured one-to-one or focus group interviews. Transcribed interviews will be analysed using reflexive thematic analysis. Key themes and sub-themes will be developed.
Ethical approval has been granted by the Health Service Executive Mid-Western Ethics Committee (REC Ref: 026/2022) (25/03/2024). The findings will be submitted for publication and presented at relevant national and international academic conferences.
To develop and psychometrically test a comprehensive Cancer Nurse Self-Assessment Tool (CaN-SAT).
Modified Delphi to assess content validity and cross-sectional survey to assess reliability and validity.
Phase 1: An expert group developed the tool structure and item content. Phase 2: Through a modified Delphi, cancer nursing experts rated the importance of each element of practice and assessed the relevance and clarity of each item. Content Validation Indexes (CVI) were calculated, and a CVI of ≥ 0.78 was required for items to be included. Phase 3: Cancer nurses participated in a survey to test internal consistency (using Cronbach's alpha coefficients) and known-group validity (through Mann–Whitney U tests). This study was reported using the Guidelines for Reporting Reliability and Agreement Studies (GRRAS) checklist.
The CaN-SAT underwent two rounds of Delphi with 24 then 15 cancer nursing experts. All elements of practice were rated as important. Only three items achieved a CVI < 0.78 after round one; however, based on open-ended comments, 26 items were revised and one new item added. After round two, all items received a CVI above 0.78. The final tool consisted of 93 items across 15 elements of practice. Cronbach's alpha coefficients were between 0.92 and 0.98 indicating good reliability. Mann–Whitney U tests demonstrated significant differences between clinical nurses and advanced practice nurses across 13 out of 15 elements of practice.
The CaN-SAT is a comprehensive, valid and reliable tool that can be used for cancer nurses to self-assess current skill levels, identify their learning needs and inform decisions about educational opportunities to optimise cancer care provision.
The research team included three patient advocates from Cancer Voices NSW, who were actively involved in all aspects of the study and are listed as authors.
Various instruments exist for assessing agitation and broader non-cognitive symptoms in dementia (NCSD). However, the feasibility and practicality of using these instruments in residential settings with people with advanced dementia have not been evaluated. The aim of our review is to identify the available evidence regarding tools for measuring (1) Agitation and (2) NCSD in people with advanced dementia in residential settings, in terms of use (feasibility and psychometric properties) in this population.
Literature searches will be carried out in Medline, Embase, CINAHL, PsycInfo, Scopus, Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials. Grey literature databases and relevant websites will also be explored for guidance documents, task reports, etc. A three-stage screening process will be adopted and will include pilot testing of source selectors. Two reviewers will independently perform title and abstract screening, then full text screening, against the defined eligibility criteria. This scoping review protocol was registered with Open Science Framework (https://osf.io/p7g86).
Due to the nature of the scoping review, ethical approval is not required. Results will be disseminated in a peer-reviewed journal and at international conferences.
To review current evidence on the implementation and impact of virtual nursing care in long-term aged care.
An integrative rapid literature review.
Medline, CINAHL, Web of Science, Embase, Ageline and Scopus.
The review included studies involving virtual care interventions provided by nurses (or by a multidisciplinary team including nurses) to older people in residential aged care that reported health outcomes or stakeholder experiences. Consistent with PRISMA guidelines, databases were systematically searched in July and August 2024, focusing on literature published since 2014. Studies were screened in Covidence by three team members, with conflicts resolved by additional reviewers. Studies not involving nurses or not set in aged care were excluded.
The search identified 13 studies, which included quantitative, qualitative and mixed-method approaches, conducted in both Australian and international settings, as well as in rural and metropolitan locations. Nurses were often involved as part of an existing virtual care programme, typically located in a hospital setting. The training and credentials of nurses delivering VN varied in terms of specialisation and advanced practice. The model of care in general was ad hoc, though in some cases there were regular, scheduled VN consultations. The time requirements for onsite staff and nurses were not well articulated in any of the studies, and information on the funding models used was also lacking.
There is some evidence that VN interventions in aged care may improve communication, enhance person-centred care and reduce emergency department presentations and hospitalisations.
Rigorous, ongoing evaluation of VN interventions is required to ensure their appropriate application in residential aged care.
Cystic fibrosis (CF) is a genetic condition of impaired membrane electrolyte transport and is characterised by defects in the production and function of the cystic fibrosis transmembrane conductance regulator (CFTR) protein. Ground-breaking CFTR modulator therapy has resulted in a notable shift in the clinical presentation and progressive nature of CF, across both pulmonary and extrapulmonary systems. Access to CFTR modulator therapies in people with CF is occurring in a staged, descending age process, with clinical trials focusing primarily on safety and efficacy. There is a lack of robust, real-world longitudinal data on CFTR modulator therapy in infants and young children where extrapulmonary outcomes such as growth, micronutrient status and pancreatic function are the key focus.
Pancreatic, nutritional and clinical outcomes in children 0–5 years with CF during the first 2 years of CFTR modulator therapy (PaNC) is a prospective cohort study involving all eight tertiary paediatric CF centres in Australia. Infants and children 4 months to 5 years of age who are eligible for elexacaftor/tezacaftor/ivacaftor (ETI) or ivacaftor (IVA) meet the inclusion criteria for PaNC, with a total eligible cohort of 303 children at the commencement of recruitment. The primary outcomes are change in weight-for-length/body mass index z score and change in serum micronutrient status, at 6–12 monthly intervals, during the first 2 years of treatment with ETI or IVA. Secondary outcomes include change in exocrine pancreatic function, measured by faecal elastase-1, change in the use and dose of pancreatic enzyme replacement therapy, nutritional and gastrointestinal therapies and change in sweat chloride levels. Linear mixed modelling will be used to analyse primary and secondary endpoints. This protocol is reported in accordance with ‘The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Statement’ reporting guidelines.
Overarching governance and ethics approval has been granted by Monash Health Human Research Ethics Committee, in addition to all eight sites receiving site-specific authorisation approvals prior to the commencement of recruitment. Opportunities for CF consumers to be involved in targeted dissemination plans will be initiated via CF Australia at the completion of the study period. Additionally, a summary of non-identifiable results will be provided to CF consumers and CF healthcare providers via scientific and lay conferences and via peer-reviewed journals.
ACTRN12624001185550; Pre-results.
This study aims to assess the association between neighbourhood socioeconomic deprivation and outcomes reflecting comprehensive diabetes care (CDC).
Retrospective cohort study
US Medicare Advantage (MA) data, 2015–2020.
National sample of MA enrollees with diabetes.
Primary outcomes included six indicators of CDC from the Healthcare Effectiveness Data and Information Set: haemoglobin (Hb) A1c (HbA1c) testing, HbA1c control (9%), blood pressure control (
There were 827 227 enrolments included in the final analysis. After adjusting for demographic (age, sex, race/ethnicity and dual eligibility) and regional characteristics (rurality and primary care providers per capita), high neighbourhood deprivation was associated only with worse glycaemic control (for HbA1c>9%, risk ratio (RR) 1.04, 95% CI 1.02 to 1.07). This relationship was significant for white and Asian patients (RR 1.08, 95% CI 1.05 to 1.11 and RR 1.18, 95% CI 1.05 to 1.32, respectively); outcomes for black and Hispanic patients were worse overall but independent of neighbourhood deprivation (RR 1.00, 95% CI 0.96 to 1.05 and RR 0.98, 95% CI 0.94 to 1.03, respectively). In the fully adjusted model, neighbourhood deprivation was not associated with measures that directly reflect access to care, including the occurrence of HbA1c testing and receipt of eye exams (RR 0.99, 95% CI 0.94 to 1.04 and RR 1.03, 95% CI 1.00 to 1.05).
An increased risk of poor glycaemic control was observed for patients from areas of high neighbourhood deprivation, independent of individual socioeconomic status. Neighbourhood factors and their intersection with racial and ethnic disparities are important considerations for achieving equity in diabetes care.
Breast cancer is the most commonly diagnosed cancer among women worldwide. Survivors often experience physical and psychological effects arising from breast cancer and its treatment, which can last months and years, adversely impacting quality of life. As the number of early breast cancer survivors increases, models of specialist-led follow-up care in hospital settings are not sustainable and evidence suggests that they may not meet survivors’ needs. Nurse-enabled, shared-care, follow-up models between cancer specialist and primary care teams have potential to address this need.
The proposed research is a multicentre, prospective, pragmatic, stepped-wedge cluster-randomised trial designed to test the effectiveness and implementation of IBIS-Survivorship, a follow-up care model for patients with early breast cancer who have completed primary treatment. The IBIS-Survivorship intervention involves a nurse-led consultation, development of a Survivorship Care Plan and case-conferencing between a breast care nurse and the patient’s primary care provider. This study seeks to recruit 1079 breast cancer survivors across six cancer centres (clusters) in Australia. Health-related quality of life at 12 months assessed by the Functional Assessment of Cancer Therapy - Breast Cancer questionnaire will be the primary endpoint, along with a range of patient-reported outcomes, safety indicators and cost-effectiveness measures as secondary endpoints. General and generalised linear mixed models will be used to assess the effectiveness of the intervention versus usual care. Implementation and process outcomes will be assessed using the Reach Effectiveness Adoption Implementation Maintenance framework.
Ethical approval was provided by the Metro South Hospital and Health Service Human Research Ethics Committee (HREC/2020/QMS/59892) and reciprocally across the other five trial sites under National Mutual Acceptance arrangements. Results will be disseminated through peer-reviewed academic journal publications and presentations at national and international conferences.
Australia and New Zealand Clinical Trials Registry (ANZCTR) Trial ID: ACTRN12621000188831.
by Mario Bustos-Rubilar, Fiona Kyle, Merle Mahon
Deafness from birth represents a critical challenge for children’s communication, with substantial public health considerations. One intervention has been cochlear implants (CI) for children with severe to profound deafness. Since 2008, Chile has implemented regulations to provide a CI at an early age. However, wide variability exists in factors and expected outcomes without previous national studies. This study aimed to characterise deaf children with CI in Chile and evaluate the impact of CI on speech perception and production, social inclusion, and parental satisfaction. We conducted a prospective study using hospital clinical records and an online questionnaire with 107 deaf children under 15 who had received CIs from 2017 to 2019. We characterised factors and outcomes and investigated the relationship between demographic, audiological, and social determinants of health and outcomes, including communication at home, CAPII, SIR, Geers and Moog Scale, Social Inclusion, and Parental Satisfaction. Our study showed a national profile of deaf children with CI, representing 70% of those implanted from 2017 to 2019. CI beneficiaries lived in more developed boroughs (.54) compared to the national average (.37). Communication and speech perception outcomes varied and were concerning, yet more positive outcomes were presented for social inclusion and parental satisfaction. We found an association between the measured outcomes and children’s age, a socio-economic factor, CI use and CI training. This novel national study supports integrating public services close to each beneficiary’s borough to improve outcomes with the device. CI use and parental training might be crucial measures during rehabilitation treatment.To develop and psychometrically test two newly developed Cancer Nurse Self-Assessment Tools for early and metastatic breast cancer (CaN-SAT-eBC and CAN-SAT-mBC).
Instrument development and psychometric testing of content validity, reliability and construct validity.
A three-phase procedure was conducted. Phase 1: An expert working group was formed to design and develop each tool using Benner's Model of Clinical Competence. Phase 2: The Content Validation Index (CVI) was used to assess the relevance and clarity of each item on the tools with breast cancer nurse experts and nursing educators. A CVI ≥ 0.78 was required for an item to be included in each tool. Phase 3: The tools were tested for internal consistency using Cronbach's alpha and construct validity using principal component analysis (PCA). The Guidelines for Reporting Reliability and Agreement Studies were followed in reporting this study.
Each tool underwent two rounds of content validation. Ten experts were involved in the content validation for the CaN-SAT-eBC and 12 experts involved for CaN-SAT-mBC. The final versions comprised 18 (CAN-SAT-eBC) and 22 elements (CaN-SAT-mBC). All items obtained a satisfactory CVI of 0.83–1.0. Data from 159 and 126 nurses were analysed to evaluate reliability for CaN-SAT-eBC and CaN-SAT-mBC, respectively. The Cronbach's alpha coefficients for all elements were between 0.83 and 0.98. The PCA supported that each element was unidimensional and composed of internally correlated items, with the exception of the ‘Diagnostics’ element of practice which has a two-component structure measuring basic and advanced diagnostic tasks.
The two CaN-SATs are comprehensive, valid and reliable. They can be used for self-assessment by nurses in relation to breast cancer care and for identifying learning needs for long-term professional development. The self-assessment tools can also be used to develop education initiatives for specialised breast cancer nurses.
No patient or public contribution.
To understand, from a nursing perspective, factors affecting the use of prophylactic dressings to prevent pressure injuries in acute hospitalised adults.
Pressure injury causes harm to patients and incurs significant costs to health services. Significant emphasis is placed on their prevention. Relatively recently, prophylactic dressings have been promoted to reduce pressure injury development. However, in the acute care setting, information about the clinical use of these dressing is lacking.
Qualitative, descriptive.
Nineteen medical and surgical nurses participated. Semi-structured interviews were conducted and transcribed verbatim. Thematic analysis was performed using an inductive approach using NVivo software.
Three themes were identified, reflecting factors that influenced and perpetuated indiscriminate use of prophylactic dressings: False sense of security; Convenience and task prioritisation; and Navigating challenges in evidence-based pressure injury prevention.
The findings indicate inconsistent prevention practices, with prophylactic dressings often applied without justification or referral to research-based evidence to guide clinical decision-making. There was a prevailing attitude of ‘job done’ when a prophylactic dressing was applied.
This study has identified several factors that perpetuate the inappropriate use of prophylactic dressings for pressure injury prevention that may be amenable to organisational change. The findings indicate that nurses often rely on these dressings as a shortcut due to time constraints, which led to missed skin assessments and low-value care. The research can be used to inform the development of clear guidelines on dressings within hospital settings which encourage assessment-based selection for their use, and process-based guidance for their application, skin surveillance, dressing inspection and removal.
The Consolidated Criteria for Reporting Qualitative Research (COREQ) reporting guideline was followed.
Neither patients nor the public were directly involved in this study.
Background
Chinese American immigrants have been underrepresented in health research partly due to challenges in recruitment.
Objectives
This study aims to describe recruitment and retention strategies and report adherence in a 7-day observational physical activity study of Chinese American immigrants with prior gestational diabetes during the COVID-19 pandemic.
Methods
Foreign-born Chinese women aged 18–45 years, with a gestational diabetes index pregnancy of 0.5–5 years, who were not pregnant and had no current diabetes diagnosis were recruited. They wore an accelerometer for 7 consecutive days and completed an online survey. Multiple recruitment strategies were used: (a) culturally and linguistically tailored flyers, (b) social media platforms (e.g., WeChat [a popular Chinese platform] and Facebook), (c) near-peer recruitment and snowball sampling, and (d) a study website. Retention strategies included flexible scheduling and accommodation, rapid communications, and incentives. Adherence strategies included a paper diary and/or automated daily text reminders with a daily log for device wearing, daily email reminders for the online survey, close monitoring, and timely problem-solving.
Results
Participants were recruited from 17 states; 108 were enrolled from August 2020 to August 2021. There were 2,479 visits to the study webpage, 194 screening entries, and 149 inquiries about the study. Their mean age was 34.3 years, and the mean length of U.S. stay was 9.2 years. Despite community outreach, participants were mainly recruited from social media (e.g., WeChat). The majority were recruited via near-peer recruitment and snowball sampling. The retention rate was 96.3%; about 99% had valid actigraphy data, and 81.7% wore the device for 7 days. The majority of devices were successfully returned, and the majority completed the online survey on time.
Discussion
We demonstrated the feasibility of recruiting and retaining a geographically diverse sample of Chinese American immigrants with prior gestational diabetes during the COVID-19 pandemic. Recruiting Chinese immigrants via social media (e.g., WeChat) is a viable approach. Nonetheless, more inclusive recruitment strategies are needed to ensure broad representation from diverse socioeconomic groups of immigrants. To gather and understand the experience of hospital mealtimes from the perspectives of those receiving and delivering mealtime care (older inpatients, caregivers and staff) using photovoice methods to identify touchpoints and themes to inform the co-design of new mealtime interventions.
This study was undertaken on acute care wards within a single metropolitan hospital in Brisbane, Australia in 2019. Photovoice methods involved a researcher accompanying 21 participants (10 older patients, 5 caregivers, 4 nurses and 2 food service officers) during a mealtime and documenting meaningful elements using photographs and field notes. Photo-elicitation interviews were then undertaken with participants to gain insight into their experience. Data were analysed using inductive thematic analysis, involving a multidisciplinary research team including a consumer.
Themes were identified across the three touchpoints: (1) preparing for the meal (the juggle, the anticipation), (2) delivering/receiving the meal (the rush, the clutter and the wait) and (3) experiencing the meal (the ideal, pulled away and acceptance). Despite a shared understanding of the importance of meals and shared vision of ‘the ideal’ mealtime, generally this was a time of tension, missed cares and dissatisfaction for staff, patients and caregivers. There was stark contrast in some aspects of mealtime experience, with simultaneous experiences of ‘the rush’ (staff) and ‘the wait’ (patients and caregivers). There was an overwhelming sense of acceptance and lack of control over change from all.
This study identified themes during hospital mealtimes which have largely gone unaddressed in the design of mealtime interventions to date. This research may provide a framework to inform the future co-design of mealtime interventions involving patients, caregivers and multidisciplinary staff, centred around these key touchpoints.
Mealtimes are experienced differently by patients, caregivers, nurses and food service officers across three key touchpoints: preparing for, delivering/receiving and experiencing the meal. Improving mealtime experiences therefore necessitates a collaborative approach, with co-designed mealtime improvement programs that include specific interventions focusing each touchpoint. Our data suggest that improvements could focus on reducing clutter, clarifying mealtime roles and workflows and supporting caregiver involvement.
Mealtimes are the central mechanism to meet patients' nutritional needs in hospital; however, research consistently shows that many patients do not eat enough to meet their nutritional requirements and that they often do not receive the mealtime assistance they require. Interventions to improve hospital mealtimes have, at best, shown only modest improvements in nutritional intake and mealtime care practices. Gaining deeper insight into the mealtime experience from multiple perspectives may identify new opportunities for improvement.
Patients, caregivers and staff have shared ideals of comfort, autonomy and conviviality at mealtimes, but challenges of complex teamwork and re-prioritisation of mealtimes in the face of prevailing power hierarchies make it difficult to achieve this ideal. There are three discrete touchpoints (preparing for, delivering/receiving and experiencing the meal) that require different approaches to improvement. Our data suggests a need to focus improvement on reducing clutter, clarifying mealtime roles and workflows and supporting caregivers.
The research provides a framework for multidisciplinary teams to begin co-designing improvements to mealtime care to benefit patients, caregivers and staff, while also providing a method for researchers to understand other complex care situations in hospital.
This manuscript is written in adherence with the Standards for Reporting Qualitative Research.
Patients and caregivers were involved in the conception and design of the study through their membership of the hospital mealtime reference group. A consumer researcher (GP) was involved in the team to advise on study conduct (i.e. recruitment methods and information), data analysis (i.e. coding transcripts), data interpretation (i.e. review and refinement of themes) and manuscript writing (i.e. review and approval of final manuscript).
FreshRSS 