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Muslim communities perspectives and preferences regarding end-of-life symptom management: a systematic review and narrative synthesis

Por: Mourhli · J. · Sosnowski · K. · Kuhn · I. · Bowers · B.
Objectives

To provide a synthesis of the published research evidence on Muslims’ perspectives and preferences regarding end-of-life symptom management to inform future practice and research priorities aimed at providing sensitive end-of-life care.

Design

Systematic review and narrative synthesis.

Data sources

MEDLINE, EMBASE, CINAHL, PsycINFO, Web of Science, ASSIA, The Cochrane Library and Global Health were searched from 1 January 1994 to 10 July 2024, alongside reference searches of included papers and hand searches of two journals.

Eligibility criteria

The included papers presented primary research on end-of-life care among Muslims in the British Isles.

Data extraction and synthesis

Data were collected on publication details, study aims, participants, methods and results. Studies were appraised using Gough’s weight of evidence framework. An inductive narrative synthesis consisting of three steps was conducted. This involved conducting a preliminary synthesis of findings, exploring relationships between studies and assessing the robustness of the synthesis.

Results

18 papers were included in the synthesis. Patients prioritised conformity between religion, culture and end-of-life symptom management. Symptom management preferences were also influenced by patients’ desire to maintain a sense of control at the end of life. Family-based care is culturally accepted, and indeed expected, to achieve a peaceful death. Healthcare professionals experienced challenges in providing sensitive symptom management given their unfamiliarity with the religious needs of Muslims.

Conclusions

Co-design research methods are essential to better understand care priorities within diverse Muslim communities. Meaningful collaboration among patients, families and healthcare professionals is necessary to identify mutually acceptable and beneficial approaches to promote culturally and religiously sensitive end-of-life symptom management.

General practitioner care of residential aged care facility residents at end of life: a systematic literature review and narrative synthesis

Por: Browne · S. · Kelly · M. P. · Bowers · B. · Kuhn · I. · Duschinsky · R. · Daniels · C. · Barclay · S.
Objectives

In 2023, 21% of deaths occurred in residential aged care facilities (RACFs), a setting expected to play an increasing role in palliative and end-of-life care (PEoLC). General practitioners (GPs) oversee and deliver PEoLC in residential and nursing homes, yet little is known about their practice. We conducted a systematic review of the published evidence concerning how GPs provide this care: what they do and the quality, challenges and facilitators of that care.

Design

Systematic review and narrative synthesis using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Data sources

Medline, Embase, CINAHL, PsycINFO, Web of Science, Scopus and NHS Evidence and grey literature via Google Scholar were searched through 9 October 2024.

Eligibility criteria

We included studies presenting new empirical data from qualitative, quantitative or mixed methods, were published in the English language and conducted in the UK, the European Union, Australia, New Zealand and Canada. We excluded studies with no new empirical data, discussion papers, conference abstracts, opinion pieces, study participants under 18 years old and in care settings other than RACF.

Data extraction and synthesis

One independent reviewer used standardised methods to search and screen study titles for inclusion. This reviewer assessed all abstracts of the included papers, and a second independent reviewer screened 60% of the abstracts to validate inclusion. Risk of bias was assessed using Gough’s Weight of Evidence assessment. Thematic analysis was used to describe the contents of the included papers; a narrative synthesis approach was taken to report the findings at a more conceptual level.

Results

The search identified 5936 titles: 35 papers were eligible and included in the synthesis. This is a nascent evidence base, lacking robust research designs and characterised by small sample sizes; the results describe the factors observed to be important in the delivery of care. Care provision is extremely variable; no models of optimal care have been put forward or tested. Challenges to care provision occur at every level of the care system. At macro level, service-level agreements and policies vary: at meso level, team-working, communication technology solutions and equipment availability vary: at micro level, GPs’ interests in providing PEoLC vary as does their training. No study addresses residents’ and relatives’ experiences and expectations of GPs' involvement in PEoLC in RACFs.

Conclusions

The limited evidence base highlights that GP care at end of life for RACF residents varies greatly, with enablers and challenges at all levels in the existing care systems. Little research has examined GP PEoLC for RACF residents in its own right; insight is derived from studies that report on this issue as an adjunct to the main focus. With national policies focused on moving more PEoLC into community settings, these knowledge deficits require urgent attention.

Infant behavioural assessment and intervention program to support neurodevelopmental outcome of very preterm infants at two years corrected age: a cluster randomised controlled trial study protocol

Por: Smith · M. · Kuhn · P. · Thiriez · G. · Debillon · T. · Datin-Dorriere · V. · Leboucher · B. · Mitanchez · D. · Courtois-Communier · E. · Sizun · J. · Roue · J.-M.
Introduction

Preterm infants are at risk of developmental impairment, especially those born before 33 weeks gestational age. Many studies have shown a positive impact of early interventions on medical outcomes during hospitalisation, long-term cognitive development and parental anxiety. Infant Behavioral Assessment and Intervention Program (IBAIP) has shown positive effects on cognitive development but also on motor impairment in a Dutch cohort. We aim to confirm these results in a multicentric, cluster randomised controlled trial in a French setting.

Methods and analysis

Eight French neonatal intensive care units (NICUs) will be randomised before study initiation to intervention or control group. We aim to include 240 infants born between 25 weeks and 33 weeks gestational age. IBAIP intervention comprises monthly home visits with a trained professional from hospital discharge until 6 months corrected age. Both groups receive standard care according to local organisation. The primary endpoint is composite cognitive score at 2 years corrected age using Bayley Scale of Infant Development Fourth Edition (BSID IV). Secondary endpoints include BSID IV subscores, Ages and Stages Questionnaire scores and parental stress. Analysis is in intention to treat. Univariate and multivariate analysis will be performed on primary and secondary endpoints.

Ethics and dissemination

Informed consent from one or both parents will be necessary for all patients. Study results will be published in peer-reviewed scientific journals. If our hypothesis is confirmed, IBAIP could be implemented on a nationwide scale. The study was registered with clinicaltrials.gov (ID: 29BRC17.0219).

Trial registration number

NCT04685356.

Quick pathway for patients with high pRobability of dislocatEd hemiarthroplasty or total hip arthroplasty to minimise the time from hospital aDmission to redUCtion of the prosthesis (Q-REDUCE): protocol for a prospective cohort study

Por: Eggers Rasmussen · L. · Forberg Almas · T. · Kuhne-Qvist · P. J. · Beese Dalby · R. · Biesenbach · P. · Lykke Hermansen · L.
Introduction

Patients with total hip arthroplasties and hemiarthroplasties are both subject to hip dislocations. Although the incidence of complications differs, both patient groups suffer immediate high pain and need acute treatment. The purpose of this study is to design a fast-track pathway for patients with a dislocated hip prosthesis primarily to reduce the time from arrival to reduction and the total hospitalisation time. The secondary aim is to investigate whether quicker prosthesis reduction influences subsequent hip function and quality of life, reduces pain experience immediately and in the long term, and increases patient satisfaction.

Methods and analysis

This is a prospective observational cohort study, initiated on 1 December 2024 and continuing for 2 years. During the first year, patients admitted to the University Hospital of Southern Denmark, Esbjerg, will follow the current standard treatment pathway. After 1 December 2025, a newly developed treatment pathway (fast-track) will be adhered to. Based on a sample size calculation, 120 patients will be included. The main clinical outcomes (time to reduction (primary outcome), total hospitalisation) are registered from patient files. The patients are followed up for 1 year to measure patient-reported outcomes.

Ethics and dissemination

The study is conducted as a treatment quality study and is locally approved by the Executive Board at the University Hospital of Southern Denmark. The results will be published in relevant national and/or international journals and presented at relevant congresses.

Trial registration number

NCT06639334.

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