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Bridging the Social Gap Through ‘Conscious Caring’: A Constructivist Grounded Theory of the Art of Caring for Older Adults With Dual Sensory Impairment

ABSTRACT

Aim

The aim of this study was to develop a conceptual understanding of the role of caring for older adults with combined vision and hearing impairment (DSI).

Background

Dual sensory impairment (DSI) impacts both listening and speechreading communication, function and social participation, meaning that older adults often require support and care to ‘age in place’ successfully. Family carers play a key role in supporting older adults with DSI to maintain social and physical health.

Design/Methods

This qualitative study uses Charmaz's constructivist grounded theory (GT) methodology. Data were collected between 2017 and 2019 and analysed using constructivist GT methods. Lengthy interviews with eight family carers of older adults living with DSI explored personal histories of DSI, relationships with families, social networks and health care professionals.

Results

This study demonstrates that caring in this context is predominantly social and ‘invisible’. To reduce the social effort of their family member with DSI and to maintain their own self-identity, family carers adopted a ‘conscious caring’ approach. This is conceptualised as an approach to caring that supports family carers to access resources embedded in their social networks by bridging the gap between the dyad and their broader, more diverse social networks.

Conclusion

This study identifies that a reduction in both close and broader social networks limits personal, social and psychosocial resources and impacts the capacity of the dyad to renegotiate their roles, create and maintain their individual and shared social networks and successfully transition to living with DSI.

Implications

There is a gap in the literature regarding the impact of sensory impairments on complex communication, health and social care needs of older adults and the role that family carers play. Registered nurses require complex communication skills to support older persons with DSI during health and social care interactions. A better understanding of DSI itself, as well as understanding the key role family carers play in integrating care for their family member, is crucial to delivering person-centred care.

Impact

This study addresses a growing social gerontological issue and identifies the role that family carers play in integrating health and social care for their family member with DSI. Better professional recognition of DSI and increased visibility of the challenges of living with DSI could help address barriers to effective communication between service providers, formal care support staff and those with DSI. Integrating family carers into care teams is critical to improving health and social care experiences for both caregiver and care receiver.

No Patient or Public Involvement

This study did not include patient or public involvement in its design, conduct, or reporting.

Wound Care Knowledge of Community Pharmacists and Pharmacy Staff: A Cross‐Sectional Survey

ABSTRACT

Chronic wounds pose a public health challenge, with community pharmacists increasingly recognised for their potential role in wound care. Since all chronic wounds originate from acute wounds, pharmacists can play a proactive role in preventing chronicity. Assessing pharmacy staff's wound care knowledge is essential as initiatives to enhance their involvement are underway in Australia. This study aimed to assess wound care knowledge among pharmacists and non-pharmacist staff in Australian community pharmacies. A national cross-sectional electronic survey was conducted between January and August 2022. Developed with multidisciplinary experts, it assessed understanding of wound healing, referral protocols, wound identification, management, and dressing selection. Descriptive and content analyses were performed, and multivariate linear regression identified predictors of knowledge scores. Of 120 responses, 70% were pharmacists, 14% non-pharmacist staff, and 16% unspecified. The median knowledge score was 27 out of 37 (IQR = 21, 30; range = 5–37). Profession, experience, and prior training were significant predictors of higher scores (p < 0.001, R 2 = 0.347). Dressing knowledge was weakest, with only 10 out of 103 respondents (9.7%) correctly identifying all types and applications. Critical knowledge gaps underscore the need for targeted educational interventions for pharmacy staff.

Pragmatic trial evaluating a randomly allocated Supplemental Nutrition Assistance Program outreach and enrolment assistance programme in Michigan: study protocol

Por: Samuel · L. · Stuart · E. A. · Liu · Y. · Szanton · S. L. · Clark · A. L. · Miguel · M. · Schneider · M. · Mashrah · A. · Laretz · M. · Swenor · B.
Introduction

Low-income adults with disabilities experience disproportionately high rates of food insecurity and preventable healthcare utilisation. The Supplemental Nutrition Assistance Program (SNAP) can reduce food insecurity and improve health, but there are accessibility gaps in the SNAP enrolment process. Existing outreach and enrolment assistance programmes have been shown to boost SNAP enrolment, but their health effects are understudied. This study estimates the effects of a SNAP outreach and enrolment assistance programme on health outcomes among low-income adults with disabilities.

Methods and analysis

The study pragmatically evaluates a programme that provided outreach and SNAP enrolment assistance for low-income households. The study leverages a random process that selected households for one of two types of outreach, including an information-only arm and an information plus enrolment assistance arm, which formed a control group by default. The study will estimate the effect of this programme among low-income adults with disabilities using Medicaid and SNAP administrative data. Study outcomes include emergency department, hospital and long-term nursing home utilisation. SNAP enrolment and benefit amounts are secondary study outcomes and will be tested as a mediating mechanism of action. The study will test effect heterogeneity based on race, ethnicity, age and chronic conditions.

Ethics and dissemination

The study, which relies on deidentified data, was determined to be exempt as human subjects research by the Institutional Review Boards at Johns Hopkins Medicine and the Michigan Department of Health and Human Services. The study is being conducted in ongoing consultation with an Advisory Group of experts in food advocacy and disability advocacy. In addition to disseminating findings in peer-reviewed publications, findings will be disseminated to state decision-makers and the community in partnership with an advisory group.

Hospital discharge planning in cardiac care: study protocol for a mixed-methods study on the implementation, influencing factors and quality of care in Germany

Por: Imhof · L. · Bartels · R. · Blum · K. · Blume · K. S. · Fleischer · S. · Gottschalk · S. · Heber · R. · Horenkamp-Sonntag · D. · Meyer · G. · Remppis · B. A. · Schneider · U. · Schreyoegg · J. · Winter · V.
Introduction

Discharge planning (DP) is essential to ensure continuity of care during patient transitions between inpatient and outpatient settings. Although DP has been legally required for all hospitals in Germany since 2017, several studies show considerable variation in its implementation, likely due to differences in structural characteristics and organisational processes. Both quality and efficiency-enhancing DP processes are particularly important in the context of cardiovascular disease, which is the leading cause of mortality and a major contributor to healthcare costs in Germany. The ‘Ready to Discharge’ (R2D) project investigates the implementation status, influencing factors and outcomes of DP in cardiac units of German hospitals. By integrating quantitative and qualitative data, we aim to identify best practices and provide actionable recommendations for improving DP processes.

Methods and analysis

A mixed-methods study design will be used. Quantitative analyses will be based on primary data from hospital and patient surveys combined with secondary data from health insurance claims and hospital quality reports. Key outcome measures will include healthcare utilisation outcomes (eg, readmissions, emergency department visits), patient health status outcomes (eg, patient satisfaction, self-rated health) and medication-related outcomes (eg, medication adherence). Qualitative interviews with healthcare professionals will enrich the findings by providing insights into barriers and facilitators to DP.

Ethics and dissemination

This study was approved by the Ethics Committee of Bergische University of Wuppertal and the German Federal Office for Social Security. Informed consent will be obtained for all primary data collections. Hospital managing directors will be informed prior to the hospital survey and will be able to withdraw consent. Patients can withdraw their consent at any time. Secondary data will be analysed in pseudonymised form to ensure patient confidentiality. Results will be disseminated through workshops, regional and international conferences and peer-reviewed publications.

Substance Checking Outreach and PrEP Engagement (SCOPE) Study: protocol for a non-randomised clinical trial in Baltimore, Maryland USA

Por: Schneider · K. E. · Nestadt · D. F. · Martin · E. M. · Morris · M. · Rouhani · S. · Weir · B. W. · Sherman · S. G.
Introduction

As the opioid crisis continues, people who use drugs (PWUD) experience a disproportionate burden of both HIV and overdose, driven by increased injection-related HIV outbreaks and an opaque and rapidly evolving drug market, respectively. Pre-exposure prophylaxis (PrEP) for HIV and point-of-care drug checking services are underused yet potentially impactful interventions to address the harms of the opioid crisis. Implementing such interventions using known strategies to enhance client engagement and reduce access barriers, such as street outreach, mobile services and peer navigation, can optimise intervention and maximise their impact.

Methods and analysis

The Substance Checking Outreach and PrEP Engagement (SCOPE) Study is a non-randomised clinical trial evaluating the impact of the Check It intervention, a mobile community PrEP and drug checking intervention in Baltimore, Maryland, USA. SCOPE will recruit a cohort of 500 PWUD at risk for HIV through street-based recruitment methods. Cohort members will be followed semi-annually for 18 months. The primary study outcomes are engagement with the PrEP continuum of care and the number of non-fatal overdoses. We will use both random effects models and marginal structural models to estimate the effects of Check It on participant engagement on the PrEP continuum and the number of non-fatal overdoses over time.

Ethics and dissemination

Study procedures have been approved by the Johns Hopkins Bloomberg School of Public Health Institutional Review Board. Risks to participants are low, with the most serious risk being potential data confidentiality breaches. This risk was minimised through the use of secure data storage platforms with limited user access. Study findings will be disseminated through peer-reviewed manuscripts, academic presentations, and reports and fact sheets designed for lay audiences.

Trial registration number

This study was registered with clinicaltrials.gov (study ID: NCT05977881; Protocol ID: 00017498).

Selective neoadjuvant therapy of rectal cancer patients (SELREC): study protocol for a European randomised controlled, open, multicentre non-inferiority trial

Por: Klotz · R. · Engerer · C. · Tenckhoff · S. · Uzun-Lang · K. · Schwab · C. · Wild · C. · Sander · A. · Baumann · L. · Klose · C. · Kauczor · H.-U. · Schirmacher · P. · Jäger · D. · Debus · J. · Al-Saeedi · M. · Probst · P. · Ulrich · A. · Schneider · M. · Diener · M. K. · Kahlert · C. · Mic
Introduction

Neoadjuvant (chemo)radiotherapy (n(C)RT) followed by resection with total mesorectal excision (TME) constitutes the standard treatment for patients with locally advanced rectal cancer of the middle and lower third. However, n(C)RT has demonstrated no significant impact on overall survival but is associated with adverse effects, including impaired sphincter and sexual function. We hypothesise that omitting n(C)RT in selected patients with a clear circumferential resection margin (CRM) >1 mm as determined through preoperative MRI is not inferior regarding local recurrence rate within 3 years after surgery. That treatment approach may show fewer adverse effects and be more cost-effective.

Methods and analysis

Selective neoadjuvant therapy of rectal cancer patients (SELREC) is a randomised controlled, parallel-group, open, multicentre, non-inferiority trial. The experimental intervention involves performing TME surgery without n(C)RT. In contrast, the control intervention adheres to German S3-guidelines, incorporating neoadjuvant radiotherapy (nRT) with a dosage of 5x5 Gy or a total of 50.4 Gy. Additionally, if applicable, concomitant chemotherapy (CT) based on 5-fluorouracil is administered, followed by TME surgery within less than 12 weeks. Adjuvant treatment according to guidelines is allowed depending on the (y)pTNM stage.

The inclusion criteria for this study encompass adult patients with primary adenocarcinoma of the rectum in whom the main tumour mass is located less than 12 cm away from the anal verge, as assessed via proctoscopy. Additionally, eligible participants are required to have a preoperative tumour stage determined by MRI of either T1 or T2 with lymph node involvement (N1) or T3 with no lymph node involvement (N0) or with lymph node involvement (N1) and no distant metastases (M0). The assessment of a clear CRM >1 mm, based on MRI, is another prerequisite for inclusion. A total of 1074 patients in approximately 35 centres are planned to be allocated to the trial.

The primary endpoint of the trial is local recurrence within 3 years after surgery. The primary estimand is based on the full analysis set using a logistic mixed model (margin 3%). The first secondary endpoint is no/minor low anterior resection syndrome (LARS) score at 2 years after surgery, and further secondary endpoints include survival outcomes and quality of life. Safety analysis involves describing the frequencies of major intervention-specific complications, such as the acute toxicity of n(C)RT according to CTCAE and perioperative morbidity and mortality according to Clavien-Dindo criteria.

SELREC is financially supported by the German Federal Ministry of Education and Research.

Ethics and dissemination

This trial has been prospectively registered in the German Clinical Trials Register.

Previously, the study had been approved by the responsible ethics committee of Heidelberg and the local ethics committees of the collaborating institutions before patient enrolment. Any protocol deviation that has an impact on relevant parameters such as study design, endpoints or patient safety will be reported to the responsible ethics committees.

The results will be published in a peer-reviewed scientific journal and on institutional websites.

Trial registration number

German Clinical Trials Register DRKS00030567.

MultiAgency, prospective, exploratory, non-intervention, cohort Study on Human Impact Exposure oNboard high-speed boats (MASHIEN): protocol

Por: Ullman · J. · Myers · S. D. · Bretschneider · K.-T. · Kelly · K. R. · Daniel · Y. · Hurpin · V. · Kaehler · J. · Kasin · J. I. · Hveding · K. · Mansfield · N. · Masouros · S. D. · Perl · D. · Wijnands · N. · Vallee · I. · Stevens · V. · Fraser · J. J. · Rolfson · O. · Robinson · Y.
Introduction

High-speed boat operations expose personnel to slamming-induced impacts, which can lead to musculoskeletal injuries and cognitive impairments. Despite existing safety measures, regulations and protocols, the risk of injuries remains significant. The MultiAgency, prospective, exploratory, non-intervention, cohort Study on Human Impact Exposure oNboard high-speed boats study aims to investigate the nature and magnitude of these impacts, their acute and long-term health effects, and potential injury prevention strategies to improve operational safety and performance.

Methods and analysis

This is an ongoing multicentre, prospective, non-intervention, observational cohort study. The first participant was enrolled on 23 August 2024. High-speed boat operators log self-reported pain data via a smartphone app, using a Visual Analogue Scale and pain drawings. Triaxial accelerometers are installed on boat hulls and worn by participants to measure impact exposure. Data analysis assesses correlations between exposure and reported pain, enabling the identification of risk factors and the development of safety guidelines for high-speed boat operations.

Ethics and dissemination

The study has received ethical approval from the relevant ethics committees, including the Swedish Ethics Review Authority (no. 2022-04931-01). All participants will provide informed consent before enrolment. The findings will be disseminated through technical reports, articles in peer-reviewed journals, conference presentations and direct engagement with military and maritime stakeholders to enhance training protocols and safety measures.

Trial registration number

NCT05299736.

AVATAR Virtual Reality Social therapy (AVATAR_VRSocial) for distressing voices and their interference in social everyday life in early psychosis: protocol of a single-blind parallel group randomised controlled feasibility study

Por: Rus-Calafell · M. · Luker · M. · Marzinzik · M. · Nguyen · P.-M. · Schneider · S. · Teismann · T. · Ehrbar · N. · Tas · E. · Zhang · X. C. · Edwards · C. · Huckvale · M. · Craig · T. K. J. · Garety · P. · Ward · T.
Introduction

Around 70% of people with psychosis experience auditory verbal hallucinations (AVHs), which can cause distress and impair the social functioning of the individual. AVATAR therapy works by facilitating a ‘face-to-face’ dialogue between the person and a digital representation (avatar) of their persecutory voice. Although there is cumulative evidence of this way of working with voices, enhancing the therapeutic focus on improved confidence and sense of control of the voices in social situations represents a promising way to boost generalisation of therapy gains into social contexts. We aim to enhance AVATAR therapy by incorporating immersive Virtual Reality (VR) social environments aiming to help the person to deal better with their voices in daily situations.

Methods and analysis

A randomised controlled feasibility trial will be conducted. 40 patients aged 18 or above who are at early stages of psychosis (first episode of psychosis in the last five years) and report distressing and interfering voices will be recruited. Participants will be randomised to receive either a novel, enhanced version of AVATAR therapy (AVATAR_VRSocial) in addition to usual care or usual care alone. Assessor-blinded assessments will be conducted at baseline, 3 months (post-intervention) and 6 months (follow­-up). Key therapeutic targets of AVATAR_VRSocial will be those established by the previous evidence of this approach (ie, power and control, self-esteem and future focus), while introducing exposure and management of distressing voices during social interactions. Analyses will focus on feasibility outcomes (recruitment, retention and completion rates) and preliminary estimates of intervention effects. Qualitative interviews will be carried out with participants allocated to AVATAR_VRSocial to gain a comprehensive understanding of participants’ views on the acceptability of the intervention and research procedures. Thematic analysis of the qualitative interviews will assess the acceptability of the intervention, trial procedures and the new VR technology and software involved.

Ethics and dissemination

The study has received ethical approval from the Ethics Commission at the Faculty of Psychology (Ruhr-Universität Bochum), and there is an independent Trial Steering Committee and Lived Experience Advisory Panel also supporting it. Findings will be disseminated through peer­-reviewed publications, conference presentations and science dissemination events.

Trial registration number

ISRCTN35980117.

Negative impact of chemotherapy on kinetic growth rate of the future liver remnant if applied following PVE or ALPPS

by Klara Welcker, Martin A. Schneider, Tim Reese, Andrea Ehrenfeld, Hauke Weilert, Axel Stang, Peter Wohlmuth, Mia-Maria Warnke, Carolin Reiner, Thomas von Hahn, Karl J. Oldhafer, Andreas H. Mahnken, Roland Brüning

Purpose

Modern liver surgery has improved the percentage of potentially resectable malignant tumors. However, if the future liver remnant is small, patients remain at risk of developing postoperative liver failure. Thus, the future liver remnant must be increased, while at the same time, the primary tumor may have to be controlled by chemotherapy. To address this conflict, we retrospectively analyzed the changes in hypertrophy before and after Associating Liver Partition with Portal vein ligation for Staged hepatectomy (ALPPS) or Portal Vein Embolization (PVE), with or without parallel systemic chemotherapy.

Materials and Methods

We retrospectively analysed 172 patients (54 female and 118 male), treated with ALPPS in 90 patients (median age 61 years [Q1, Q3: 52,71]) and with PVE in 82 patients (median age 66 years [Q1, Q3: 56,73]). The median control interval was 4.9 [Q1, Q3: 4.0, 6.0] weeks after the PVE, and 2.6 [Q1, Q3: 1.6, 5.8] weeks after ALPPS step 1.

Results

The overall kinetic growth rate (median) for the entire group was 0.02 (2%) per week. When systemic chemotherapy was administered prior to intervention, the kinetic growth rate of these treated patients (vs. untreated) exhibited a median of 0.020 [Q1, Q3: 0.011, 0.067] compared to 0.024 [Q1, Q3: 0.013, 0.041] (p = 0.949). When chemotherapy was administered after the PVE/ ALPPS treatment, the kinetic growth rate declined from a median of 0.025 [Q1, Q3: 0.013, 0.053] to 0.011 [Q1, Q3: 0.007, 0.021] (p = 0.005). Subgroup analysis showed statistically significant effects only in the PVE group (median ALPPS -45% (p = 0.157), PVE -47% (p = 0.005)).

Conclusion

This retrospective analysis indicated that systemic chemotherapy given after PVE/ the first step of the ALPPS procedure, i.e., the growth phase, has a negative effect on the kinetic growth rate.

Muerte contemporánea: ¿huellas valiosas y duraderas o negación de la muerte?

Ensayo reflexivo cuya propuesta aborda el informe contemporáneo titulado “Black Mirror” de la vida real: Brasil funda Startup para recrear personas muertas, escrito para la revista Forbes Brasil y publicado el 20 de septiembre de 2020. Lo que nos interesa problematizar en este ensayo se refiere al gobierno del otro, a la disciplina y a los posibles cambios biopolíticos resultantes de esta enternización de uno mismo. A partir de los Estudios Culturales, utilizando específicamente conceptos de Foucault y Byung-Chul Han, analizamos cómo se presentan los discursos sobre la muerte en este informe, entendiendo el gobierno de los cuerpos y las formas de vida, en una perspectiva en la que una identidad humana sería mapeada, procesada y monetizada en una inteligencia artificial. Ampliando el significado foucaultiano, estaríamos pasando de la sociedad disciplinar y biopolítica a la sociedad de ingresos y de la “psicopolítica”, del panóptico al panóptico virtual o digital. Es seductor mantenerse vivo y producir emociones positivas en las personas que amamos, incluso después de nuestra muerte. Para los profesionales de la salud, estas reflexiones son válidas en la conducción de cuidado, las prácticas asistenciales y en la comprensión de la finitud.

Oral intake of solid medications in patients with post‐stroke dysphagia. A challenge for nurses?

Abstract

Aim

To provide a comprehensive overview of how stroke nurses manage solid medication (SM) delivery to patients with post-stroke dysphagia.

Design

Cross-sectional study.

Methods

A self-administered online survey was carried out among nurses in German-speaking countries between September and December 2021.

Results

Out of a total of 754 responses, analysis was conducted on 195 nurses who reported working on a stroke unit. To identify swallowing difficulties in acute stroke care, 99 nurses indicated routinely administering standardised screenings, while 10 use unvalidated screenings, and 82 are waiting for a specialist evaluation. Regardless of whether screening methods are used or not, most preferred a non-oral route of medication administration for patients with suspected dysphagia. None of the respondents reported administering whole SMs orally to patients. If screening methods indicate dysphagia, approximately half of the respondents would modify SMs. Participants who stated to use the Gugging Swallowing Screen managed the SM intake guided by its severity levels. One-third of the group who awaited assessment by the dysphagia specialist provided modified medication before the consultation.

Conclusion

Most of the nurses on stroke units use swallowing screens and avoid the administration of whole SMs in post-stroke dysphagia. In addition to the non-oral administration, SMs are modified if dysphagia is suspected. Precise guidance on the administration of SM is needed, based on screening tests and prior to expert consultation.

Trial and Protocol Registration

ClinicalTrials.gov: Registration ID: NCT05173051/ Protocol ID: 11TS003721.

Implications for the profession and/or patient care

The present paper serves to alert nurses to the issue of patient safety when administering medication for acute stroke-induced dysphagia.

Impact

SM delivery after acute stroke-induced dysphagia is often neglected. While nurses are aware of the risk associated with dysphagia and would not give whole SMs to patients, the modification of tablets and their administration with semisolids are common.

Reporting Method

This study was reported according to the Checklist for Reporting of Survey Studies (CROSS).

Stigma, social and structural vulnerability, and mental health among transgender women: A partial least square path modeling analysis

Abstract

Introduction

Existing literature suggests that transgender women (TW) may be at high risk for adverse mental health due to stress attributed to combined experiences of stigma and complex social and structural vulnerabilities. Little research has examined how these co-occurring experiences relate to mental health. We aimed to test a theoretically driven conceptual model of relationships between stigma, social and structural vulnerabilities, and mental health to inform future intervention tailoring.

Design/Methods

Partial least square path modeling followed by response-based unit segmentation was used to identify homogenous clusters in a diverse community sample of United States (US)-based TW (N = 1418; 46.2% White non-Hispanic). This approach examined associations between latent constructs of stigma (polyvictimization and discrimination), social and structural vulnerabilities (housing and food insecurity, unemployment, sex work, social support, and substance use), and mental health (post-traumatic stress and psychological distress).

Results

The final conceptual model defined the structural relationship between the variables of interest within stigma, vulnerability, and mental health. Six clusters were identified within this structural framework which suggests that racism, ethnicism, and geography may be related to mental health inequities among TW.

Conclusion

Our findings around the impact of racism, ethnicism, and geography reflect the existing literature, which unfortunately shows us that little change has occurred in the last decade for TW of color in the Southern US; however, the strength of our evidence (related to sampling structure and sample size) and type of analyses (accounting for co-occurring predictors of health, i.e., stigma and complex vulnerabilities, reflecting that of real-world patients) is a novel and necessary addition to the literature. Findings suggest that health interventions designed to offset the negative effects of stigma must include anti-racist approaches with components to reduce or eliminate barriers to resources that contribute to social and structural vulnerabilities among TW. Herein we provide detailed recommendations to guide primary, secondary, and tertiary prevention efforts.

Clinical Relevance

This study demonstrated the importance of considering stigma and complex social and structural vulnerabilities during clinical care and design of mental health interventions for transgender women who are experiencing post-traumatic stress disorder and psychological distress. Specifically, interventions should take an anti-racist approach and would benefit from incorporating social support-building activities.

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