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Cambio social y transformación del cuidado en la familia

A pesar de los cambios sociales: ¿se sigue erigiendo la familia como una institución cuidadora?, ¿cómo ha cambiado su estructura?, ¿se han debilitado los lazos familiares o se están transformando? En este texto, se analiza la evolución de la familia desde las teorías sociológicas más clásicas hasta los pensadores posmodernos. Se reflexiona sobre las implicaciones de un cambio social y si las transformaciones del presente se han hecho permeables a la dinámica familiar y la función cuidadora de la misma. Como conclusión, se vislumbra que, tanto la familia como sus habilidades cuidadoras, son el espejo de una sociedad en continuo cambio. Está emergiendo un nuevo espacio que, en forma de resistencia, permite hacer uso de los modos de hacer heredados con una visión renovada.

Clinical course and outcomes in adults with co-occurring hypertrophic cardiomyopathy and hypertension: a scoping review protocol

Por: Arabadjian · M. · Nicolas · B. · Montgomery · S. · Pleasure · M. · Collins · M. · Reuter · M. · Massera · D. · Shimbo · D. · Sherrid · M.
Introduction

Hypertension affects 40%–60% of adults with hypertrophic cardiomyopathy (HCM), the most common inherited cardiac condition. It can be a diagnostic confounder for HCM, contributing to delayed diagnosis. Clinically, treatment of co-occurring hypertension and HCM poses challenges as first-line and second-line antihypertensive medications are often contraindicated in HCM. The clinical course in adults with hypertension and HCM is also not well understood, and studies examining patient outcomes in this population are equivocal. In this paper, we aim to outline the protocol of a scoping review, a type of literature review, to systematically synthesise existing knowledge on adults with co-occurring HCM and hypertension, highlighting knowledge and evidence gaps, and identifying future research directions to optimise outcomes in this population.

Methods and analysis

This review is guided by Arksey and O’Malley’s conceptual framework on conducting scoping reviews. We will search five electronic databases (PubMed, CINAHL, Scopus, Embase and Web of Science) and reference lists of publications to identify eligible articles focusing on medical therapy, clinical course or outcomes in adults with HCM and hypertension, between 2011 and 2023. Our search strategy and presentation of results will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses-Scoping Review guideline. First, two independent reviewers will screen articles, by title and abstract, followed by a full-text screen to identify eligible articles. Relevant data will be extracted and synthesised.

Ethics and dissemination

Ethical approval is not required for this review as it is a secondary data collection of published articles and does not involve human subject participation. We will present results of this review at relevant professional conferences and patient-centred educational events. Results will be published in a peer-reviewed journal.

Trial registration number

https://osf.io/cy8qb/?view_only=98197f4850584e51807ff9b62533a706.

Identifying biomarkers of treatment response to ciclosporin in atopic dermatitis through multiomic predictive modelling: DERMATOMICS study protocol

Por: Marin-Candon · A. · Garcia-Garcia · I. · Arias · P. · Carcas · A. J. · Diaz-Garcia · L. · Feltes Ochoa · R. · Hernandez Cano · N. · Herranz Pinto · P. · Jimenez Gonzalez · M. · Lopez -Granados · E. · Martinez-Feito · A. · Mayor-Ibarguren · A. · Rosas-Alonso · R. · Seco-Meseguer
Introduction

There is a need to optimise the management of atopic dermatitis (AD), improving the efficacy of treatments and reducing the toxicity associated with them. Although the efficacy of ciclosporine (CsA) in the treatment of AD has been thoroughly documented in the literature, the optimal dose has not been yet established. The use of multiomic predictive models of treatment response could optimise CsA therapy in AD.

Methods and analysis

The study is a low-intervention phase 4 trial to optimise the treatment of patients with moderate-severe AD requiring systemic treatment. The primary objectives are to identify biomarkers that could allow for the selection of responders and non-responders to first-line treatment with CsA and to develop a response prediction model to optimise the CsA dose and treatment regimen in responding patients based on these biomarkers. The study is divided into two cohorts: the first comprised of patients starting treatment with CsA (cohort 1), and the second, of patients already receiving or who have received CsA therapy (cohort 2).

Ethics and dissemination

The study activities began following authorisation by the Spanish Regulatory Agency (AEMPS) and the Clinical Research Ethics Committee of La Paz University Hospital approval. Trial results will be submitted for publication in an open access peer-reviewed medical speciality-specific publication.

Trial registration of this study can be located at the EU Clinical Trials Register, available from https://euclinicaltrials.eu/search-for-clinical-trials/?lang=en. Our clinical trial was registered in the website before the enrolment of the first patient complying with European regulations. EU Clinical Trials Register is a primary registry according the WHO. Once our trial was included in a primary and official registry, in order to extend the accessibility to our research, we also registered it retrospectively in clinicaltrials.gov; however, this is not mandatory as per our regulation.

Trial registration number

NCT05692843.

Validation of diagnosis of acute myocardial infarction and stroke in electronic medical records: a primary care cross-sectional study in Madrid, Spain (the e-MADVEVA Study)

Objectives

To validate the diagnoses of acute myocardial infarction (AMI) and stroke recorded in electronic medical records (EMR) and to estimate the population prevalence of both diseases in people aged ≥18 years.

Design

Cross-sectional validation study.

Setting

45 primary care centres.

Participants

Simple random sampling of diagnoses of AMI and stroke (International Classification of Primary Care-2 codes K75 and K90, respectively) registered by 55 physicians and random age-matched and sex-matched sampling of the records that included in primary care EMRs in Madrid (Spain).

Primary and secondary outcome measures

Sensitivity, specificity, positive and negative predictive values and overall agreement were calculated using the kappa statistic. Applied gold standards were ECGs, brain imaging studies, hospital discharge reports, cardiology reports and neurology reports. In the case of AMI, the ESC/ACCF/AHA/WHF Expert Consensus Document was also used. Secondary outcomes were the estimated prevalence of both diseases considering the sensitivity and specificity obtained (true prevalence).

Results

The sensitivity of a diagnosis of AMI was 98.11% (95% CI, 96.29 to 99.03), and the specificity was 97.42% (95% CI, 95.44 to 98.55). The sensitivity of a diagnosis of stroke was 97.56% (95% CI, 95.56 to 98.68), and the specificity was 94.51% (95% CI, 91.96 to 96.28). No differences in the results were found after stratification by age and sex (both diseases). The prevalence of AMI and stroke was 1.38% and 1.27%, respectively.

Conclusion

The validation results show that diagnoses of AMI and stroke in primary care EMRs constitute a helpful tool in epidemiological studies. The prevalence of AMI and stroke was lower than 2% in the population aged over 18 years.

Implementation of a frailty intervention in the transition from hospital to home: a realist process evaluation protocol for the FORTRESS trial

Por: Manuel · K. · Block · H. · Crotty · M. · Harvey · G. · Kurrle · S. E. · Cameron · I. · Lockwood · K. · Sherrington · C. · Pond · D. · Nguyen · T. A. · Laver · K.
Introduction

Frailty in Older people: Rehabilitation, Treatment, Research Examining Separate Settings (the FORTRESS study) is a multisite, hybrid type II, stepped wedge, cluster, randomised trial examining the uptake and outcomes of a frailty intervention. The intervention is based on the 2017 Asia Pacific Clinical Practice Guidelines for the Management of Frailty and begins in the acute hospital setting and transitions to the community. The success of the intervention will require individual and organisational behaviour change within a dynamic health system. This process evaluation will examine the multiple variables at play in the context and mechanism of the frailty intervention to enhance understanding of the outcomes of the FORTRESS study and how the outcomes can be translated from the trial into broader practice.

Methods and analysis

The FORTRESS intervention will recruit participants from six wards in New South Wales and South Australia, Australia. Participants of the process evaluation will include trial investigators, ward-based clinicians, FORTRESS implementation clinicians, general practitioners and FORTRESS participants. The process evaluation has been designed using realist methodology and will occur in parallel to the FORTRESS trial. A mixed-method approach will be used with qualitative and quantitative data collected from interviews, questionnaires, checklists and outcome assessments. Qualitative and quantitative data will be examined for CMOCs (Context, Mechanism, Outcome Configurations) and programme theories will be developed, tested and refined. This will facilitate development of more generalisable theories to inform translation of frailty intervention within complex healthcare systems.

Ethics and dissemination

Ethical approval for the FORTRESS trial, inclusive of the process evaluation, has been obtained from the Northern Sydney Local Health District Human Research Ethics Committees reference number 2020/ETH01057. Recruitment for the FORTRESS trial uses opt-out consent. Dissemination will be via publications, conferences and social media.

Trial registration number

ACTRN12620000760976p (FORTRESS trial).

Protocol for WeExPAnd: a prospective, mixed-methods pilot demonstration study to increase access to pre-exposure prophylaxis among women vulnerable to HIV infection in the Southern USA

Por: Psaros · C. · Goodman · G. R. · McDonald · V. W. · Ott · C. · Blyler · A. · Rivas · A. · Shan · L. · Campbell · M. · Underwood · E. · Krakower · D. · Elopre · L. · Kudroff · K. · Sherr · K. H. · Kempf · M.-C.
Introduction

African American women (AA), particularly those living in the Southeastern USA, experience disproportionately high rates of HIV infection. Pre-exposure prophylaxis (PrEP) is a highly effective HIV prevention tool that may circumvent barriers to traditional HIV prevention tools, such as condom use; however, very little is known about how to improve PrEP access and uptake among AA women who may benefit from PrEP use. This project aims to understand how to increase PrEP access among AA women in the rural Southern USA, which may ultimately affect HIV incidence in this population.

Methods and analysis

The goal of the current study is to systematically adapt a patient–provider communication tool to increase PrEP uptake among AA women receiving care at a federally qualified health centre in Alabama. We will use an iterative implementation process, by assessing the feasibility, acceptability and preliminary impact of the tool on PrEP uptake, using a pilot preintervention/postintervention design (N=125). We will evaluate women’s reasons for declining a referral to a PrEP provider, reasons for incomplete referrals, reasons for not initiating PrEP after a successful referral and ongoing PrEP use at 3 and 12 months after PrEP initiation among our sample. The proposed work will significantly contribute to our understanding of factors impacting PrEP uptake and use among AA women, particularly in underserved areas in the Deep South that are heavily impacted by the HIV epidemic and experience worse HIV-related health outcomes relative to other areas in the USA.

Ethics and dissemination

This protocol has been approved by the Institutional Review Board (IRB) at University of Alabama at Birmingham (Birmingham, AL; protocol 300004276). All participants will review a detailed informed consent form approved by the IRB and will provide written or verbal informed consent prior to enrolment. Results will be disseminated through peer-reviewed manuscripts, reports, and local, national and international presentations.

Trial registration number

NCT04373551.

Protocol for the OCAY study: a cohort study of orphanhood and caregiver loss in the COVID-19 era to explore the impact on children and adolescents

Por: Steventon Roberts · K. J. · Du Toit · S. · Mawoyo · T. · Tomlinson · M. · Cluver · L. D. · Skeen · S. · Laurenzi · C. A. · Sherr · L.
Introduction

Globally, no person has been untouched by the COVID-19 pandemic. Yet, little attention has been given to children and adolescents in policy, provision and services. Moreover, there is a dearth of knowledge regarding the impact of COVID-19-associated orphanhood and caregiver loss on children. This study aims to provide early insights into the mental health and well-being of children and adolescents experiencing orphanhood or caregiver loss in South Africa.

Methods and analysis

Data will be drawn from a quantitative longitudinal study in Cape Town, South Africa. A sample of children and adolescents between the ages of 9 and 18 years, experiencing parental or caregiver loss from COVID-19, will be recruited together with a comparison group of children in similar environments who did not experience loss. The study aims to recruit 500 children in both groups. Mental health and well-being among children will be explored through the use of validated and study-specific measures. Participants will be interviewed at two time points, with follow-up data being collected 12–18 months after baseline. A combination of analytical techniques (including descriptive statistics, regression modelling and structural equation modelling) will be used to understand the experience and inform future policy and service provision.

Ethics and dissemination

This study received ethical approval from the Health Research Ethics Committee at Stellenbosch University (N 22/04/040). Results will be disseminated via academic and policy publications, as well as national and international presentations including high-level meetings with technical experts. Findings will also be disseminated at a community level via various platforms.

La esperada historia de las matronas

Dolores Ruiz-Berdún es suficientemente conocida, tanto entre los compañeros que cultivan la Historia de las Matronas, la Historia de la Enfermería y la Historia de la Ciencia; pero conviene recordar algunos aspectos de su biografía para aquellos que no estén al tanto de su vida académica [Fragmento de texto].

Exploring the impact of COVID‐19 on the psychological well‐being of oncology healthcare professionals

Abstract

Aims

To explore how psychological well-being is maintained by healthcare professionals (HCPs) employed in a cancer setting during the COVID-19 pandemic.

Design

A qualitative design using diaries and interviews to collect data was used to gain insights into how HCPs managed their well-being during the pandemic.

Methods

Interpretative Phenomenological Analysis (IPA) was used to analyse diaries and interviews completed by 66 HCPs during the second pandemic lockdown period (December 2020–April 2021). A total of 102 HCPs were recruited, drawn from five groups: nursing staff, radiographers, medical staff, allied health professionals (AHPs) (non-radiographers) and support staff.

Results

The majority of participants adjusted to the challenges of the pandemic using positive coping strategies, although difficult days required the mobilization of additional resources. Emotion management was regulated through peer relationships, professional roles and the workplace, sustained through communities of practice involving knowledge exchange, shared goals and social interactions. Maintaining high-quality patient care was a source of job satisfaction, providing a route through which positive emotions could be channelled; however, it was juxtaposed with threats to well-being from busy workloads and variable organizational responsiveness. Work routines provided a platform for well-being, underpinned by the sharing of problems and solutions within peer networks.

Conclusion

This study has highlighted the dynamic nature of well-being amongst HCPs during the pandemic. Well-being interventions should build on the preferred coping strategies of HCPs, focusing on the way individuals coalesce in groups to learn from and support one another.

Impact

HCPs may experience different psychological responses when exposed to a pandemic situation. This study identifies the strategies used by HCPs to maintain positive psychological well-being within professional roles, whilst adjusting to emerging well-being threats. Key components of HCP's well-being are addressed, which are relevant to clinical practice and the broader healthcare workforce.

Patient or Public Contribution

Research team members included public representatives who contributed to the development, methods, data collection and analysis of the study. They supported the development of the Research Assistant by providing mock interview skills training.

Riesgo de ex-posición a la Covid-19 en auxiliares de enfermería, enfermeras y médicos de un hospital universitario ante la pandemia

Objetivo principal: Los profesionales sanitarios fueron los trabajadores más afectados por Covid-19, especialmente durante las primeras oleadas. El objetivo del estudio es evaluar la percepción del riesgo de exposición al Covid-19, información recibida y participación laboral entre enfermeros, médicos y auxiliares de enfermería. Metodología: Se realizó un estudio transversal mediante una encuesta epidemiológica entre enfermeras, médicos y auxiliares de enfermería de un hospital universitario. Se realizó una validación de aspecto y contenido, un pretest cognitivo y un pilotaje de la encuesta epidemiológica con treinta sujetos. Se realizó un análisis descriptivo utilizando media y desviación estándar (DE) para las variables cuantitativas y las frecuencias absolutas (n) y relativas (%) para variables cualitativas. Se aplicó el test chi-cuadrado y el test ANOVA para evaluar la asociación de las respuestas con las variables: sexo, tipo de trabajador, área de trabajo y actividad en Unidades Covid-19. Resultados principales: Las enfermeras, médicos y auxiliares de enfermería trabajaban principalmente en áreas asistenciales y en unidades de alto riesgo de exposición. Los auxiliares de enfermería y las enfermeras tenían una mayor percepción de riesgo. Las enfermeras estaban menos implicadas en la organización, pero se sentían más apoyadas por sus compañeros. Los médicos se sentían más apoyados por sus superiores y mejor atendidos cuando tenían problemas de salud. Conclusión principal: Las enfermeras y auxiliares de enfermería presentaron mayor percepción de riesgo, las enfermeras se implicaron menos en la organización de la atención sanitaria, mientras que los médicos se sintieron más apoyados por sus superiores.

Safeguarding survival: Older persons with multiple chronic conditions' unplanned readmission experiences: A mixed methods systematic review

Abstract

Aims and objectives

The aim of this study was to create a holistic understanding of the psychosocial processes of older persons with multiple chronic conditions' experience with unplanned readmission experiences within 30 days of discharge home and identify factors influencing these psychosocial processes.

Design

Mixed methods systematic review.

Data Sources

Six electronic databases (Ovid MEDLINE (R) All 1946-present, Scopus, CINAHL, Embase, PsychINFO and Web of Science).

Review Methods

Peer-reviewed articles published between 2010 and 2021 and addressed study aims (n = 6116) were screened. Studies were categorised by method: qualitative and quantitative. Qualitative data synthesis used a meta-synthesis approach and applied thematic analysis. Quantitative data synthesis used vote counting. Data (qualitative and quantitative) were integrated through aggregation and configuration.

Results

Ten articles (n = 5 qualitative; n = 5 quantitative) were included. ‘Safeguarding survival’ described older persons' unplanned readmission experience. Older persons experienced three psychosocial processes: identifying missing pieces of care, reaching for lifelines and feeling unsafe. Factors influencing these psychosocial processes included chronic conditions and discharge diagnosis, increased assistance with functional needs, lack of discharge planning, lack of support, increased intensity of symptoms and previous hospital readmission experiences.

Conclusions

Older persons felt more unsafe as their symptoms increased in intensity and unmanageability. Unplanned readmission was an action older persons required to safeguard their recovery and survival.

Relevance to Clinical Practice

Nurses play a critical role in assessing and addressing factors that influence older persons' unplanned readmission. Identifying older persons' knowledge about chronic conditions, discharge planning, support (caregivers and community services), changes in functional needs, intensity of symptoms and past readmission experiences may prepare older persons to cope with their return home. Focusing on their health-care needs across the continuum of care (community, home and hospital) will mitigate the risks for unplanned readmission within 30 days of discharge.

Reporting Method

PRISMA guidelines.

Patient or Public Contribution

No patient or public contribution due to design.

Understanding potential participation barriers to improve trial design and outcomes: clinical trial simulation in palmoplantar pustulosis as a case study

Por: Boisvert-Huneault · C. · Trigos Herraez · D. · Pinter · A. · Kobayashi · S. · Bell · S. · Kallsen · K. · Gloede · T. · Yagi · N. · Brunette · S. · Datsenko · Y. · Baehner · F. · Clerisme-Beaty · E. · Van de Kerkhof · P.
Objectives

Evaluate the experiences and perceptions of patients participating in a simulated clinical trial and identify ways to enhance future patient-centric trial designs.

Design

International, multicentre, non-interventional, virtual clinical trial visits with patient debriefs and advisory boards.

Setting

Virtual clinic visits and accompanying advisory boards.

Participants

Nine patients with palmoplantar pustulosis for simulated trial visits; 14 patients and patient representatives for advisory boards.

Main outcome measures

Qualitative responses to trial documentation, visit schedule and logistics, and trial design were collected during patient debriefs. Results were discussed at two virtual advisory board meetings.

Results

Patients identified key barriers to participation and potential difficulties encountered when attending trial visits and completing assessments. They also proposed recommendations to overcome these challenges. Patients recognised the need for comprehensive informed consent forms, but recommended use of non-technical language, brevity and additional support to aid understanding. Other trial documentations should be relevant to the disease and include known efficacy and safety of the study drug. Patients were concerned about receiving placebo, stopping existing medications and being unable to receive the study drug after trial completion; therefore, patients and physicians recommended an open-label extension following trial completion. Trial visits were too numerous (n=20) and too long (3–4 hours each); patients recommended improvements to the design to make best use of their time and reduce unnecessary waiting. They also requested financial and logistical support. Patients expressed a desire for study outcomes that matter to them, related to their ability to undertake normal daily activities and not be a burden to others.

Conclusions

Simulated trials are an innovative method for assessing trial design and acceptance from a patient-centric perspective, enabling specific improvements to be made prior to trial initiation. Incorporation of recommendations from simulated trials could enhance trial recruitment and retention, and optimise trial outcomes and data quality.

Providing Oxygen during Intubation in the NICU Trial (POINT): study protocol for a randomised controlled trial in the neonatal intensive care unit in the USA

Por: Herrick · H. M. · O'Reilly · M. · Lee · S. · Wildenhain · P. · Napolitano · N. · Shults · J. · Nishisaki · A. · Foglia · E. E.
Introduction

Nearly half of neonatal intubations are complicated by severe desaturation (≥20% decline in pulse oximetry saturation (SpO2)). Apnoeic oxygenation prevents or delays desaturation during intubation in adults and older children. Emerging data show mixed results for apnoeic oxygenation using high-flow nasal cannula (NC) during neonatal intubation. The study objective is to determine among infants ≥28 weeks’ corrected gestational age (cGA) who undergo intubation in the neonatal intensive care unit (NICU) whether apnoeic oxygenation with a regular low-flow NC, compared with standard of care (no additional respiratory support), reduces the magnitude of SpO2 decline during intubation.

Methods and analysis

This is a multicentre, prospective, unblinded, pilot randomised controlled trial in infants ≥28 weeks’ cGA who undergo premedicated (including paralytic) intubation in the NICU. The trial will recruit 120 infants, 10 in the run-in phase and 110 in the randomisation phase, at two tertiary care hospitals. Parental consent will be obtained for eligible patients prior to intubation. Patients will be randomised to 6 L NC 100% oxygen versus standard of care (no respiratory support) at time of intubation. The primary outcome is magnitude of oxygen desaturation during intubation. Secondary outcomes include additional efficacy, safety and feasibility outcomes. Ascertainment of the primary outcome is performed blinded to intervention arm. Intention-to-treat analyses will be conducted to compare outcomes between treatment arms. Two planned subgroup analyses will explore the influence of first provider intubation competence and patients’ baseline lung disease using pre-intubation respiratory support as a proxy.

Ethics and dissemination

The Institutional Review Boards at the Children’s Hospital of Philadelphia and the University of Pennsylvania have approved the study. Upon completion of the trial, we intend to submit our primary results to a peer review forum after which we plan to publish our results in a peer-reviewed paediatric journal.

Trial registration number

ClinicalTrials.gov Registry (NCT05451953).

Sustainable dietary weight loss intervention and its effects on cardiometabolic parameters and greenhouse gas emissions: study protocol of a randomised controlled trial with overweight and obese adults in Ouagadougou, Burkina Faso

Por: Herrmann · A. · Gonnet · A. · Millogo · R. M. · d'Arc Kabre · W. J. · Beremwidougou · T. R. · Coulibaly · I. · Ouili · I. · Zorome · S. · Weil · K. · Fuelbert · H. · Soura · A. · Danquah · I.
Introduction

The global obesity epidemic and its adverse health effects have reached sub-Saharan Africa. In some urban settings, like Burkina Faso’s capital Ouagadougou, up to 43% of the adult population are overweight or obese. At the same time, modernised food systems are responsible for 26% of global greenhouse gas emissions, 50% of land use and 70% of freshwater use. International guidelines on the treatment of overweight and obesity recommend dietary intervention programmes that promote reduced calorie intake and increased physical activity. So far, weight loss interventions rarely consider sustainable dietary concepts, including healthfulness, affordability, cultural appropriateness and environmental friendliness. Therefore, we present a study protocol of a novel randomised controlled trial that aims to establish the effects of a sustainable weight loss intervention on cardiometabolic and environmental outcomes in urban Burkina Faso.

Methods and analysis

We conduct a non-blinded randomised controlled trial, comparing a 6-month sustainable diet weight loss intervention programme (n=125) with a standard weight loss information material and 5 min oral counselling at baseline (n=125). Primary outcome is a reduction in fasting plasma glucose of ≥0.1 mmol/L. Outcome measures are assessed at baseline, after 6 months and after 12 months.

Ethics and dissemination

Ethical approval for the study has been obtained from the Medical Faculty of Heidelberg University (S-376/2019) and from the Ministry of Health and the Ministry of Higher Education, Scientific Research and Innovation in Ouagadougou, Burkina Faso (No 2021-01-001). The results of the study will be disseminated to local stakeholders at a final project meeting and to the wider research community through peer-reviewed publications and conferences.

Trial registration number

DRKS00025991.

Reseña de ‘El desamparo del tabú en flor’ de José Siles González

En esta reseña Franciso Herrera Rodríguez analiza el poemario de José Siles "El desamparo del tabú enflor" describiendo sus rasgos más característicos de acuerdo con el estilo desarrollado por el autor a lo largo de su trayectoria poética

Protocol for an OpenSAFELY cohort study collecting patient-reported outcome measures using the TPP Airmid smartphone application and linked big data to quantify the health and economic costs of long COVID (OpenPROMPT)

Por: Herrett · E. · Tomlin · K. · Lin · L.-Y. · Tomlinson · L. A. · Jit · M. · Briggs · A. · Marks · M. · Sandmann · F. · Parry · J. · Bates · C. · Morley · J. · Bacon · S. · Butler-Cole · B. · Mahalingasivam · V. · Dennison · A. · Smith · D. · Gabriel · E. · Mehrkar · A. · Goldacre · B. · Smeeth
Introduction

The impact of long COVID on health-related quality of-life (HRQoL) and productivity is not currently known. It is important to understand who is worst affected by long COVID and the cost to the National Health Service (NHS) and society, so that strategies like booster vaccines can be prioritised to the right people. OpenPROMPT aims to understand the impact of long COVID on HRQoL in adults attending English primary care.

Methods and analysis

We will ask people to participate in this cohort study through a smartphone app (Airmid), and completing a series of questionnaires held within the app. Questionnaires will ask about HRQoL, productivity and symptoms of long COVID. Participants will be asked to fill in the questionnaires once a month, for 90 days. Questionnaire responses will be linked, where possible, to participants’ existing health records from primary care, secondary care, and COVID testing and vaccination data. Analysis will take place using the OpenSAFELY data platform and will estimate the impact of long COVID on HRQoL, productivity and cost to the NHS.

Ethics and dissemination

The Proportionate Review Sub-Committee of the South Central—Berkshire B Research Ethics Committee has reviewed and approved the study and have agreed that we can ask people to take part (22/SC/0198). Our results will provide information to support long-term care, and make recommendations for prevention of long COVID in the future.

Trial registration number

NCT05552612.

Parents of children with disabilities' perceptions regarding the quality of interaction with Health professionals working in early intervention: A qualitative descriptive study

Abstract

Aims and Objectives

The aim of this study is to explore the perceptions of parents of children with physical disabilities concerning the quality of their interaction with health professionals in early intervention programs.

Background

Despite the consensus on the need for Patient and Family-Centered Care, there are still difficulties when executing such care. The quality of interaction among patients, families, and professionals is essential to facilitate the implementation of the programs.

Design

A qualitative descriptive study with thematic analysis using a Modified Grounded Theory approach.

Methods

Data were collected through seven focus groups with 28 parents of children with physical disabilities who were undergoing early intervention programs in three centres. The study followed the COREQ guidelines and checklist.

Results

Two themes emerged from the experiences: ‘exchange of information and education’, which included all the activities, procedures, exercises and skills taught by the professionals to help parents care for their child; and ‘interpersonal skills’, which focused on the way the professional relates with the child and the parents. Several subthemes emerged within each theme.

Conclusions

This study identified which elements of the professional-parent interaction are considered by parents when evaluating the quality of their interaction with the health care provider of their children.

Relevance to Clinical Practice

The results of this study bring to light certain behaviours and interactions that health professionals should consider in order to improve the perceptions of parents of children with disabilities regarding the quality of interaction in the context of early childhood intervention.

Patient or Public Contribution

Parents contributed to the data collected. Early intervention professionals were involved in participant checking to ensure the rigour of the study.

Intervenciones para restablecer la vida sexual en pacientes ostomizados

Caso: ejemplo mujer de 52 años de edad, que vive en zona rural que, a raíz de la realización de una estoma digestivo definitivo, manifiesta rechazo afectivo-sexual. Objetivo: identificar intervenciones basadas en evidencias destinadas restablecer la vida sexual en la persona ostomizada, garantizando su seguridad, aceptación de su nueva realidad corporal y motivación hacia la práctica erótica. Metodología: búsqueda de evidencias siguiendo el modelo PRAXIS. Recomendaciones de buena práctica: (a) Orientar al paciente ostomizado en todos aquellos aspectos relacionados con su estoma para recuperar la autosuficiencia, (b) Ayudar a la persona ostomizada a mejorar su imagen corporal durante el contacto sexual, (c) Implementar aquellas estrategias que la ayuden a retomar la práctica erótica- sexual, (d) Trabajar con su entorno familiar las habilidades positivas de comunicación para favorecer la aceptación de su nueva realidad corporal, (e) Estimular el contacto y visitas con personas que ha pasado por idéntica experiencia. Prácticas de autocuidado: apoyo profesional, compartir temores y experiencia con entorno social y grupos de apoyo, superar la vergüenza, actitud positiva.

The development of children born to young mothers with no, first- or second-generation HIV acquisition in the Eastern Cape province, South Africa: a cross-sectional study

Por: Sherr · L. · Haag · K. · Steventon Roberts · K. J. · Cluver · L. D. · Wittesaele · C. · Saliwe · B. · Tolmay · J. · Langwenya · N. · Jochim · J. · Saal · W. · Zhou · S. · Marlow · M. · Chen-Charles · J. J. · Toska · E.
Background

The intergenerational effects of HIV require long-term investigation. We compared developmental outcomes of different generations impacted by HIV—children of mothers not living with HIV, the ‘second generation’ (ie, with recently infected mothers) and the ‘third generation’ (ie, children of perinatally infected mothers).

Methods

A cross-sectional community sample of N=1015 young mothers (12–25 years) and their first children (2–68 months, 48.2% female), from South Africa’s Eastern Cape Province. 71.3% (n=724) of children were born to mothers not living with HIV; 2.7% (n=27; 1 living with HIV) were third-generation and 26.0% (n=264; 11 living with HIV) second-generation children. Child scores on the Mullen Scales of Early Learning (MSEL), the WHO Ten Questions Screen for Disability and maternal demographics were compared between groups using 2 tests and univariate approach, analysis of variance analysis. Hierarchical linear regressions investigated predictive effects of familial HIV infection patterns on child MSEL composite scores, controlling for demographic and family environment variables.

Results

Second-generation children performed poorer on gross (M=47.0, SD=13.1) and fine motor functioning (M=41.4, SD=15.2) and the MSEL composite score (M=90.6, SD=23.0) than children with non-infected mothers (gross motor: M=50.4, SD=12.3; fine motor: M=44.4, SD=14.1; composite score: M=94.1, SD=20.7). The third generation performed at similar levels to non-exposed children (gross motor: M=52.4, SD=16.1; fine motor: M=44.3, SD=16.1, composite score: M=94.7, SD=22.2), though analyses were underpowered for definite conclusions. Hierarchical regression analyses suggest marginal predictive effects of being second-generation child compared with having a mother not living with HIV (B=–3.3, 95% CI=–6.8 to 0 .1) on MSEL total scores, and non-significant predictive effects of being a third-generation child (B=1.1, 5% CI=–7.5 to 9.7) when controlling for covariates. No group differences were found for disability rates (26.9% third generation, 27.7% second generation, 26.2% non-exposed; 2=0.02, p=0.90).

Conclusion

Recently infected mothers and their children may struggle due to the disruptiveness of new HIV diagnoses and incomplete access to care/support during pregnancy and early motherhood. Long-standing familial HIV infection may facilitate care pathways and coping, explaining similar cognitive development among not exposed and third-generation children. Targeted intervention and fast-tracking into services may improve maternal mental health and socioeconomic support.

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