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Challenges of using and managing medication: a meta-ethnography of the experiences and perceptions of people with intellectual disability and people who support them

Por: Ghosh · I. · Adams · D. · Auguste · P. · Brown · A. · Chaplin · E. · Flynn · S. · Gauly · J. · Gill · P. · Langdon · P. E. · Mahon · D. · Martin · K. · Patterson · S. · Sutherland · D. · Tromans · S. J. · Chen · Y.-F. · Seers · K. · Supporting Medication use In people with a LEarning d
Objective

To explore the challenges experienced by people with intellectual disability, their carers and health and social care professionals when using and managing medication.

Design

A synthesis of qualitative research using meta-ethnography.

Data source

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).

Eligibility criteria for selecting studies

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.

Results

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.

Conclusions

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.

PROSPERO registration number

CRD42022362903.

Access to oxytocin, misoprostol, heat-stable carbetocin and tranexamic acid for management of postpartum haemorrhage in the Democratic Republic of the Congo, India and Kenya: a cross-sectional survey of drug availability and pricing

Por: Metzler · M. · Stationwala · M. · Mukumbayi · P. · Kibonge · S. · Doi · N. · Coffey · P.
Objectives

The aim was to assess point-in-time stock availability and pricing of drugs used for postpartum haemorrhage management (oxytocin, misoprostol, heat-stable carbetocin and tranexamic acid (TXA)).

Design

Cross-sectional point-in-time survey using an adapted version of the WHO/Health Action International methodology.

Setting

In public, for-profit and not-for-profit private health facilities and in pharmacies in the Democratic Republic of the Congo (DRC), India and Kenya.

Participants

211 health facilities in the DRC (n=63), India (n=76) and Kenya (n=72).

Primary and secondary outcome measures

Availability was calculated as a mean percentage of facility types where each medicine was observed on the day of data collection. Average procurement prices were calculated by obtaining the current purchase price per drug at each facility and then averaging prices across all facility types.

Results

Availability of the four medicines was limited, and only oxytocin in the DRC met the WHO’s benchmark of 80%. Across all countries, availability of oxytocin, misoprostol and TXA was lower in public health facilities than in other facility types, indicating an important gap. Where the four medicines were available, non-quality-assured products were predominant across the three countries. The average facility procurement prices in India and Kenya were reported to be lower than those in the DRC.

Conclusions

Availability of oxytocin, misoprostol, heat-stable carbetocin and TXA was suboptimal and varied by facility type and geography, and similar trends were found across the four drugs. This indicates that access strategies should be tailored to each drug, geographical area and facility type. Strategies to improve commodity access in public-sector facilities will be especially important, as well as improving the availability of quality-assured products, possibly through value-based procurement practices.

Design of aSpiration based thrombectomy in acUte large vessel oCclusive sTroke with dIfferent etiOlogies: a real-world multiceNtre (SUCTION) study

Por: Yan · P. · Li · M. · Yang · L. · Song · C. · Liu · S. · Chen · X. · Chen · S. · Yuan · H. · Li · K. · Guo · Q. · Liu · H. · Lu · Y. · Wang · F. · Mu · L. · Li · Z. · Han · J. · Sun · Y. · Qin · H. · Jiao · L. · Sun · Q. · SUCTION study Investigators
Introduction

Intracranial atherosclerosis is the main cause of stroke globally, with acute large vessel occlusive (LVO) stroke being a predominant contributor to stroke-related mortality. In recent years, aspiration thrombectomy (AT) has emerged as a novel therapeutic method for treating acute LVO stroke. The purpose of this study aims to investigate the safety and efficacy of AT alone or combined with stent retriever thrombectomy (SRT) in the treatment of acute LVO stroke

Methods and analysis

This is a multicentre and observational real-world study involving patients diagnosed with acute LVO stroke. Participants will be treated with AT alone or combined with SRT. According to the actual annual number of embolectomy in the sub-centre and the research years, the sample size of this study is estimated to be 400 patients, of which 300 patients of anterior circulation lesions and 100 patients of posterior circulation lesions are planned to be recruited, being considered that the incidence of posterior circulation is about 20–25%. Clinical data, including baseline characteristics, intraoperative details, postoperative outcomes and follow-up results, will be systematically collected using an Electronic Data Capture system over a follow-up period of 3 months. The primary efficacy endpoint is the rate of excellent functional outcome (modified Rankin Scale score range 0–3) after 90 days, and the successful recanalisation confirmed by digital subtraction angiography. The primary safety outcome is symptomatic intracranial haemorrhage within 48 hours (National Institutes of Health Stroke Scale score increase ≥4). This study will provide us with powerful guidance for the treatment of acute LVO stroke with different aetiologies.

Ethics and dissemination

This study protocol was approved by the Ethics Committee on Human Experimentation at Shandong Provincial Hospital Affiliated to Shandong First Medical University (approval number: SWYX:2022–1025). All the participating sites have received the ethics approval. The outcomes will be disseminated through national and international presentations and peer-reviewed publications.

Trial registration number

ChiCTR2200065172.

Parent's Process of Escalation of Care for Their Deteriorating Children Admitted to Paediatric Wards: A Grounded Theory

ABSTRACT

Aim

Explore the care escalation process initiated by parents concerned about their hospitalised child's deterioration and healthcare providers' response to parental concerns.

Design

A qualitative study using Charmaz's constructivist grounded theory.

Methods

Participants included healthcare providers, cultural mediators and parents of children hospitalized for ≥ 3 days, who had experienced previous urgent intensive care admission or parental concern during hospitalization, in a tertiary pediatric hospital. Data were collected through focus groups, and analyzed using a grounded theory methodology with NVivo Software.

Results

A total of 13 parents, 7 cultural mediators and 68 healthcare providers participated in 16 focus groups. Two main categories were identified: (1) Parents navigating the uncertainty of the escalation system to get a response; (2) Healthcare providers balancing parents' concerns, their own situation awareness, escalation processes and team relations. We developed a Grounded theory called ‘Parents Supporting Timely Escalation Processes’ (P-STEP). By monitoring their children, parents identify early signs of deterioration and advocate for escalation. Reasons for concern are their child's behaviour, communication failure and admission on an off-service ward. Parents escalate by contacting ward providers, their child's specialist or the most trusted staff and, only selected parents, the Rapid Response Team. Staff escalate parents' concern according to their own situation awareness, parent evaluation and ward escalation practices. Parent's emotions and trust are influenced by the timeliness and type of staff response.

Conclusion

While some parents effectively advocate for their child, others face obstacles due to unclear and lack of formal care escalation systems. Understanding how parents escalate care and healthcare providers respond is essential to identify facilitators, barriers, key stakeholders, and implement a formal system for parent-initiated escalation of care.

Implications for the Profession and Patient Care

Integrating parents into processes of escalation and rapid response systems could optimise early recognition and improve responsiveness in paediatric deterioration.

Reporting Method

The study adheres to the COnsolidated criteria for REporting Qualitative research (COREQ) guidelines.

Patient or Public Contribution

Parents and HCPs participated as interview respondents.

Impact of increased resident preparation time on internal medicine rounds in a tertiary teaching hospital: a time-motion study with a before-and-after comparison

Por: Garnier · A. · Cominetti · F. · Monti · M. · Marques-Vidal · P. · Bastardot · F. · Vollenweider · P. · Waeber · G. · Castioni · J. · Gachoud · D. · Kraege · V.
Objectives

To determine whether postponing daily medical rounds to provide additional preparation time for residents reduces round duration and alters time allocation during rounds, with the hypothesis that increased preparation leads to more efficient rounds without reducing patient contact.

Design

Time and motion study with a before-and-after comparison.

Setting

Internal medicine division of Lausanne University Hospital, a Swiss tertiary teaching hospital.

Participants

75 residents; 60% women; mean age of 29.6 years and 3.0 years of training.

Intervention

In 2017, the daily work schedule was reorganised by postponing rounds from 09:00 to 10:00 and moving educational sessions to the afternoon, thereby freeing 90 min to prepare patient cases before rounds.

Primary and secondary outcome measures

The primary outcome was the duration of rounds and the proportion thereof spent with patients, using computer systems or in discussion with colleagues. Secondary outcomes included the detailed distribution of resident activities during the officially scheduled round period, particularly time dedicated to supervision, teaching and administrative tasks.

Results

Round duration decreased from 142 min per shift (95% CI 128 to 156) in 2015 to 112 min (95% CI 101 to 124) in 2018 (p=0.001). The proportion of round time spent directly with patients remained stable at 47%. Computer use during rounds decreased from 43% to 32% (p

Conclusions

Postponing rounds to allow more preparation time was associated with shorter, possibly more efficient rounds, reduced computer use in patient presence and increased supervision and teaching.

Trial registration number

ISRCTN69703381, https://doi.org/10.1186/ISRCTN69703381 (registration date: 24 April 2018).

Deconstructing resuscitation training for healthcare providers: a protocol for a component network meta-analysis

Introduction

The necessity of enhancing resuscitation training has been encouraged by The International Liaison Committee on Resuscitation and the American Heart Association to reduce mortality, disability and healthcare costs. Resuscitation training is a complicated approach that encompasses various components and their mixture. It is essential to identify the most effective of these components and their combinations, to measure the corresponding effect size and to understand which participant groups may enjoy the greatest advantage.

Methods and analysis

We will systematically search 12 databases and two clinical trial registries for randomised controlled trials (RCTs) that examine different resuscitation training methods from inception to April 2025. The analysis will be carried out using the standard network meta-analysis and component network meta-analysis models. Resuscitation skills of staff will be the primary outcome of this analysis. Paired reviewers will independently screen and extract data. A consensus will be sought with the principal investigators to resolve any disagreements that cannot be achieved through regular meetings. Each intervention in each RCT will be decomposed according to its constituent components, such as delivery method, interactivity, teamwork, digitalisation and type of simulator. The analysis will be conducted using the frequentist and bayesian approach in the R environment. RoB V.2.0 and Confidence in Network Meta-Analysis will, respectively, be used to assess the risk of bias and the certainty of the evidence.

Ethics and dissemination

As we will use only aggregated secondary data without individual identities, ethical approval is not required. Results of this review will be shared through a peer-reviewed publication and presentation of papers at any relevant conferences.

PROSPERO registration number

CRD42024532878

Child and Family Centred Care: A Three‐Phased Principle‐Based Concept Analysis

ABSTRACT

Introduction

Despite a growing multidisciplinary interest in the Child and Family Centred Care approach, its meaning remains unclear in extant literature. It is, therefore, crucial to explore, analyse, describe, and clarify the concept of the Child and Family Centred Care approach and its associated terms.

Method

A three-phased principle-based concept analysis approach was used to analyse the concept of Child and Family Centred Care. A systematic search of literature was completed using the CINAHL, PsycINFO, Medline, Scopus, and Web of Science databases. Peer-reviewed articles on Child and Family Centred Care, published from inception to 2023 were included if they were available in English and discussed children aged zero to 17 years, healthcare providers, and/or caregivers. A systematic screening of articles was undertaken to remove duplicates and articles that did not meet the inclusion criteria. A concept quality criteria assessment was performed independently based on a recommended appraisal tool.

Results

Full texts of the retained 23 titles were included in the deductive thematic analysis. Guided by the three-phased principle-based concept analysis approach, data were grouped into epistemological, pragmatic, linguistic, and logical principles. The study revealed various characteristics of the concept of interest to highlight the common terms associated with the concept, primarily being collaboration, participation, communication, and respect/dignity.

Conclusions and Implications

This concept analysis provides a theoretical definition of the Child and Family Centred Care approach. The definition emphasises the child as an individual and an active collaborator with healthcare providers and their family. Standardised language improving health outcomes, patient satisfaction, and healthcare systems.

No Patient or Public Contribution.

Coping with a chronic condition that requires lifelong medication: a qualitative study with people living with atrial fibrillation in Sao Paulo, Brazil

Objective

To provide insight into how people cope with living with atrial fibrillation (AF) and taking oral anticoagulants (OACs), informing how services and healthcare delivery could be improved to offer the appropriate support patients require, thereby optimising their quality of life and well-being.

Design

A qualitative study employing focus group discussions (FGDs).

Setting

11 primary care units in a socioeconomically deprived area of the Butantan district in São Paulo, Brazil.

Participants

Adults (≥18 years) with AF purposively recruited based on sex, age and socioeconomic status.

Results

Saturation was met with three FGDs comprising seven, five and five participants, respectively. Theme one focused on self-management, where many participants discussed their methods for adhering to dietary restrictions and alternative medications, including plant-based options and specific foods, and how they modified their daily activities to reduce AF complications and symptoms. Theme two was rationality, where participants described three main ways that they cope with taking long-term medication (often warfarin): thinking that it controls their AF symptoms; it is an obligation; it prevents morbidity and premature death. Theme three was attitude and emotions, where participants described their initial reactions of shock and fear after diagnosis and ongoing emotions of sadness and frustration due to required self-management activities and regular blood tests. Theme four was medication regimen, where participants discussed difficulties with polypharmacy, changes to AF medication (particularly from non-vitamin K antagonist OACs (NOACs) to warfarin), side effects from taking warfarin and various methods of medication management.

Conclusions

This study presents three key findings with implications for patient care and support. First, the shock and fear experienced during diagnosis due to a lack of knowledge about AF suggests that improvements in public knowledge about AF are needed. Second, people with additional chronic conditions may need improved care and support, given the concern participants had regarding when and how to take their medications safely. Third, improved access to NOACs may reduce the difficulties, frustrations and concerns participants had regarding warfarin use (eg, diet, dose adjustments, self-management and monthly international normalised ratio tests).

Population pharmacokinetics and pharmacodynamics of two dosing regimens of antenatal corticosteroids: protocol for a prospective nested study in a randomised controlled trial

Introduction

Antenatal corticosteroid (ACS) regimens have remained unchanged since the initial trials in 1972, with the optimal regimen still undetermined. The WHO ACTION (Antenatal CorticosTeroids for Improving Outcomes in preterm Newborns)-III trial is a three-arm individually randomised double-blind trial evaluating the efficacy and safety of two different ACS dosing regimens (currently used and lower-dose ACS regimens vs placebo) in women with a high probability of having a late preterm birth. This study protocol nested within this trial aims to evaluate the pharmacokinetics (PK) and pharmacodynamics (PD) effects of two different ACS dosing regimens in pregnant women in the late preterm period (34–36 weeks) to help inform an optimal dosing regimen.

Methods and analysis

The study will be conducted in two of the five countries participating in the WHO ACTION-III trial—India (Delhi, Belagavi) and Nigeria (Ibadan and Ile-Ife). We will use a population PK approach using sparse sampling to study the PK effects of the two ACS regimens, that is, 6 mg dexamethasone phosphate (DEXp) or 2 mg betamethasone phosphate (BETp), administered intramuscularly every 12 hours for a maximum of four doses or till birth, whichever is earlier, compared with placebo. We will also ascertain the fetal–maternal ratio of DEXp and BETp at birth.

Maternal venous blood samples will be collected at 0, 1–4 hours, 8–12 hours after the first dose, and at 24–36 hours, 48–60 hours, 72–96 hours after the last dose, and immediately after birth, along with cord blood. Concentrations of DEXp and BETp will be measured at set time points using a validated liquid chromatography mass spectroscopy assay. PD parameters measured will include total and differential white blood cell count (by automated analysers using electrical impedance), plasma glucose (hexokinase method) and serum cortisol (using a validated electrochemiluminescence immunoassay), at predefined time points. PK models will be developed for each drug using non-linear mixed effects methods. Optimal dosing will be investigated using Monte Carlo simulations.

Ethics and dissemination

The study has been approved by the WHO Ethics Review Committee and the site-specific ethics committees of the participating leading institutions. Written informed consent will be obtained from all participants. The study results will be published in a peer-reviewed journal and presented at scientific conferences.

Trial registration number

ISRCTN11434567.

The Illness Experience of Nurses Who Become Patients: A Phenomenological Study

ABSTRACT

Aim

To explore the phenomenon of nurse–patient's illness experience.

Design

A multicentre phenomenological qualitative study was conducted in Italy.

Methods

A convenience sample of nurses with an acute illness experience, requiring at least one hospitalisation of ≥ 3 days, was enrolled. Semi-structured interviews were conducted. Data were transcribed verbatim and analysed according to Giorgi's descriptive method. Ethics committee approval was obtained for this study. The COnsolidated criteria for REporting Qualitative research checklist guided the study reporting.

Results

Eleven interviews were conducted from August 2022 to July 2023. The essential structure ‘being on the other side of the fence’ and six common themes, ‘role reversal’, ‘expanded awareness’, ‘professional identity’, ‘emotional swing’, ‘having experienced it on their own skin’ and ‘reframing the healthcare context’, were identified. Nurses' awareness of the healthcare system and pathways related to their professional background at the onset of their illness experience turns into an expanded awareness of the illness experience in itself, having it ‘lived on their own skin’. When nurses return from the ‘other side of the fence’ to their professional role this new awareness triggers a more compassionate and cognizant relationship with patients and colleagues.

Conclusion

This study highlights the lived experience of nurses who became patients, showing characterising elements of ‘being on the other side of the fence’ and the potential of this experience for expanding nurses' awareness of other patients' experiences under their care.

Implications for the Profession and/or Patient Care

Nurse–patients' illness experience may be instrumental to reinforce nurses' awareness, empathy and any positive attitude or practice devised to improve patient's illness experiences and patient centred care in hospitals.

Patient or Public Contribution

Nurses participated as interview respondents.

Comparing effectiveness of conservative policy to craniofacial surgery in children with metopic synostosis: protocol for an observational cohort study on clinical outcomes, psychosocial well-being and costs in a Dutch academic hospital

Por: Tio · P. · van Staalduinen · M. · Okkerse · J. · Dulfer · K. · Erler · N. · Loudon · S. · Telleman · M. · Abdel-Alim · T. · Roshchupkin · G. · Heemskerk · S. · Polinder · S. · van Veelen · M.-L. · Bannink · N. · van Driel · A. · Faasse · M. · Ista · E. · Joosten · K. · Spoor · J. · Weissba
Introduction

Traditionally, surgical intervention has been the standard treatment for children with metopic synostosis, assuming that it reduces the risk of raised intracranial pressure, thereby preventing vision and cognitive impairment, and also restores the abnormal head shape. However, recent research suggests a sporadic occurrence of raised intracranial pressure in patients with metopic synostosis. In addition, following surgery, an overall tendency to have worse cognitive and behavioral outcomes and more refractive errors compared to healthy peers is observed. Research on conservative (non-surgical) treatment in metopic synostosis is limited and lacks a comparative design. The purpose of this study is to compare the (cost-)effectiveness of conservative and surgical treatment in patients with metopic synostosis.

Methods and analysis

This is the protocol for an observational cohort study with a duration of 8 years. A total of 450 patients with metopic synostosis will be included. The primary outcome is head growth as a predictor for increased intracranial pressure. Non-inferiority with regard to head growth from 0 to 8 years (yearly difference in SD) is determined using a linear mixed model adjusted for potential confounders. Secondary outcomes include papilledema, orthoptic outcomes; forehead shape; cognitive, behavioural and psychological outcomes; and societal costs. A cost-effectiveness analysis will be performed.

Ethics and dissemination

The study has been reviewed and approved by the Medical Research Ethics Committee of the Erasmus MC, University Medical Center Rotterdam (MEC-2022-0142). Written informed consent will be obtained from both parents of each participant. The results will be disseminated by publication in international peer-reviewed journals.

Trial registration number

ClinicalTrials.gov NCT06069479.

Genomic variants associated with type 2 diabetes mellitus among Filipinos

by Eva Maria C. Cutiongco-de la Paz, Jose B. Nevado Jr., Elizabeth T. Paz-Pacheco, Gabriel V. Jasul Jr., Aimee Yvonne Criselle L. Aman, Mark David G. Francisco

Type 2 diabetes mellitus leads to debilitating complications that affect the quality of life of many Filipinos. Genetic variability contributes to 30% to 70% of T2DM risk. Determining genomic variants related to type 2 diabetes mellitus susceptibility can lead to early detection to prevent complications. However, interethnic variability in risk and genetic susceptibility exists. This study aimed to identify variants associated with type 2 diabetes mellitus among Filipinos using a case-control design frequency matched for age and sex. A comparison was made between 66 unrelated Filipino adults with type 2 diabetes mellitus and 121 without. Genotyping was done using a candidate gene approach on genetic variants of type 2 diabetes mellitus and its complications involving allelic association and genotypic association studies with correction for multiple testing. Nine (9) significant variants, mostly involved in glucose and energy metabolism, associated with type 2 diabetes mellitus in Filipinos were found. Notably, a CDKAL1 variant (rs7766070) confers the highest level of risk while rs7119 (HMG20A) and rs708272 (CETP) have high risk allele frequencies in this population at 0.77 and 0.66, respectively, making them potentially good markers for type 2 diabetes mellitus screening. The data generated can be valuable in developing genetic risk prediction models for type 2 diabetes mellitus to diagnose and prevent the condition among Filipinos.

COVID-19-related research data availability and quality according to the FAIR principles: A meta-research study

by Ahmad Sofi-Mahmudi, Eero Raittio, Yeganeh Khazaei, Javed Ashraf, Falk Schwendicke, Sergio E. Uribe, David Moher

Background

According to the FAIR principles (Findable, Accessible, Interoperable, and Reusable), scientific research data should be findable, accessible, interoperable, and reusable. The COVID-19 pandemic has led to massive research activities and an unprecedented number of topical publications in a short time. However, no evaluation has assessed whether this COVID-19-related research data has complied with FAIR principles (or FAIRness).

Objective

Our objective was to investigate the availability of open data in COVID-19-related research and to assess compliance with FAIRness.

Methods

We conducted a comprehensive search and retrieved all open-access articles related to COVID-19 from journals indexed in PubMed, available in the Europe PubMed Central database, published from January 2020 through June 2023, using the metareadr package. Using rtransparent, a validated automated tool, we identified articles with links to their raw data hosted in a public repository. We then screened the link and included those repositories that included data specifically for their pertaining paper. Subsequently, we automatically assessed the adherence of the repositories to the FAIR principles using FAIRsFAIR Research Data Object Assessment Service (F-UJI) and rfuji package. The FAIR scores ranged from 1–22 and had four components. We reported descriptive analysis for each article type, journal category, and repository. We used linear regression models to find the most influential factors on the FAIRness of data.

Results

5,700 URLs were included in the final analysis, sharing their data in a general-purpose repository. The mean (standard deviation, SD) level of compliance with FAIR metrics was 9.4 (4.88). The percentages of moderate or advanced compliance were as follows: Findability: 100.0%, Accessibility: 21.5%, Interoperability: 46.7%, and Reusability: 61.3%. The overall and component-wise monthly trends were consistent over the follow-up. Reviews (9.80, SD = 5.06, n = 160), articles in dental journals (13.67, SD = 3.51, n = 3) and Harvard Dataverse (15.79, SD = 3.65, n = 244) had the highest mean FAIRness scores, whereas letters (7.83, SD = 4.30, n = 55), articles in neuroscience journals (8.16, SD = 3.73, n = 63), and those deposited in GitHub (4.50, SD = 0.13, n = 2,152) showed the lowest scores. Regression models showed that the repository was the most influential factor on FAIRness scores (R2 = 0.809).

Conclusion

This paper underscored the potential for improvement across all facets of FAIR principles, specifically emphasizing Interoperability and Reusability in the data shared within general repositories during the COVID-19 pandemic.

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