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Delivering integrated diabetes and mental healthcare for people with type 1 diabetes disordered eating (T1DE): a mixed methods evaluation

Por: Harkness · E. F. · Bashir · S. · Kletter · M. · Gillibrand · S. · Wilson · P. · Dumville · J. · Bower · P.
Objectives

People with type 1 diabetes may be at increased risk of disordered eating, which may increase risk of elevated poor outcomes and high-risk complications. Type 1 diabetes disordered eating (T1DE) services were set-up to integrate diabetes and mental healthcare to better support people with T1DE and improve longer-term outcomes. A rapid evaluation was conducted to explore the implementation of T1DE services. Specifically, we aimed to: describe service delivery models; investigate staff experiences of impact and delivery of implementation; explore patient experiences of T1DE services; and to report health outcomes and associated costs.

Design

Rapid evaluation using mixed methods (service mapping, staff and patient interviews, staff survey, analysis of clinical and economic data). Health outcome data was reported at baseline and 6 months.

Setting

This study explored the implementation of five new T1DE services and three existing services.

Participants

Staff working within T1DE services and patients who received care from T1DE services.

Results

Assessment of our mixed methods study identified four key findings: (1) T1DE delivery models: The T1DE services displayed modest variation in models of delivery, but similarities were more evident, with a focus on direct delivery to patients involving joint meetings between diabetes and mental health staff. Nevertheless, some services also took on a ‘consultation’ role, providing advice and support to wider staff outside the service also managing these patients. Delayed implementation of the services slowed the formation of fully integrated teams and the ability of services to operate at scale. (2) Staff experience: Workforce issues were a crucial aspect of T1DE pilots. Managing this patient population is associated with high levels of anxiety for staff. Nevertheless, once formed, staff reported a very positive experience of working in integrated teams. (3) Patient experience: Although only a small sample of patients were interviewed, they reported a profoundly different experience to their previous care, which was now perceived as supportive and relationship focused. Although such improvements were aligned with the integrated care model underlying T1DE, it was less clear how such changes in patient experience would feature in decisions about commissioning. (4) Health outcomes and associated costs: There were 139 patients accepted onto the care pathway. Improvements were seen for all health outcomes. Compared with baseline measures, there was a mean 0.97% reduction in HbA1c (glycated haemoglobin) from 11.2% to 10.2% at 6 months. Improvements were also seen in other outcomes, including the diabetes eating problem scale and the diabetes distress scale. However, the number of patients on the care pathway with follow-up at 6 months was relatively small (n=29–47) and definitive statements about clinical or cost-effectiveness were not possible.

Conclusions

Overall, T1DE services were well received by both staff and patients. Due to a number of logistical challenges, the implementation of services was slower than anticipated, resulting in a limited number of patients on the care pathway. Securing local funding for existing services, once national pilot funding ended, was identified as a significant challenge. In order to ensure services are sustainable and commissioned at a local level, consideration may need to be given to alternative service delivery models.

Setting research priorities for palliative and end-of-life care: a James Lind Alliance Priority Setting Partnership Refresh

Por: Hudson · B. F. · Ashcroft · P. · Bedford · J. · Bush · J. · Bowers · B. · Dawson · A. · Hussain · J. · Holmes · S. · Kumar · R. · Minton · O. · McCullagh · A. · Nicoll · L. · Penny · A. · Rabbitte · M. · Reece · A. · Robinson · D. · Simpson-Greene · C. · Taylor · M. · Best · S. L.
Background

Palliative care supports the physical, emotional, social and spiritual needs of people with serious life-limiting illness. Future research must align with the priorities of people approaching the end of their lives, and those close to them.

Aims

To undertake a refresh of the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership, to identify and prioritise areas for future research.

Design

The James Lind Alliance process was applied, between May 2023 and February 2025. An initial online survey collected areas for future research from participants. These were synthesised into a long list of questions and shortlisted through a second online survey. Final ranking of priorities was achieved using an adapted Nominal Group Technique within a prioritisation workshop.

Participants

People living with serious life-limiting illnesses, carers, friends and family members supporting them, bereaved people, health and social care professionals, volunteers working in palliative and end-of-life care and members of the public.

Results

1032 and 626 responses were received to survey 1 and 2, respectively. 20 people with lived and professional experience attended the prioritisation workshop. An updated list of 24 priorities for palliative and end-of-life care research was produced.

Conclusion

The priorities reflect the range of issues shaping end-of-life experiences and serve as a call to action for researchers and funders.

‘We've Taken on a More Advanced Clinical Role’: A Multimethod Study of Community Nurses' Extended Roles in Palliative Care

ABSTRACT

Aim

To explore community nurses' experiences of changes to their roles in palliative and end-of-life care.

Design

An e-survey was followed by focus groups.

Methods

Fifty-one community nurses with recent experience of delivering end-of-life care in the United Kingdom completed a survey about changes to their roles. A purposive sample of 35 respondents participated in focus groups exploring these changes in more depth; thematic analysis was used with constant comparison.

Results

As well as two new roles—prescribing and verifying death—many participants talked about a broader expansion of their role, increasing their leadership in making complex end-of-life care decisions with patients and families. Most nurses expressed pride in their new knowledge and skills, and satisfaction with the care they were providing. Yet many also expressed distress that heavy workloads impaired their capacity both to provide good clinical care and to train junior colleagues. The importance of General Practitioner support with complex cases was often highlighted, but accessing such support was sometimes difficult.

Conclusion

While welcoming the opportunity to extend their palliative care roles, many participants indicated experiencing moral distress.

Implications for the Profession and/or Patient Care

Excessive workloads and patchy medical support threaten the retention of the experienced nurses upon whom community palliative care depends.

Impact

Our findings suggest that new and extended palliative care roles are viewed positively by nurses. To be sustainable, these changes require better workload management and consistent medical back-up.

Reporting

We adhered to relevant EQUATOR guidelines, using the SRQR checklist.

Patient or Public Contribution

Our Public and Clinician Advisory Group helped shape questions and commented on findings.

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.

Educational outcomes for children and young people with cancer: study protocol for a population-based cohort study using linked education and hospital data from England

Por: Nath · S. · Stone · T. · Lam · J. · Feltbower · R. G. · Hargrave · D. · McCabe · M. G. · Brown · H. · Hickinbottom · L. C. L. · Jackson · K. · Paget · L. · Stanley · T. · Watts · P. S. · Harron · K.
Introduction

Childhood cancer survivors (CCSs) experience educational disruptions during and following treatment, yet robust, longitudinal evidence on educational performance remains limited. We will investigate differences in educational outcomes between CCSs and non-cancer peers during primary and secondary school. We will also explore how sociodemographic factors and age at diagnosis contribute to potential differences in General Certificate of Secondary Education (GCSE) examinations, a critical indicator of future academic and employment prospects.

Methods and analysis

We will use the Education and Child Health Insights from Linked Data (ECHILD) to capture linked health and education data for children born in National Health Service (NHS)-funded hospitals in England. We will generate birth cohorts spanning September 1997 to August 2015 (estimated sample size: ~10 million), formed of pupils expected to have undertaken national curriculum assessments between academic years 2004/2005 and 2021/2022 including Key Stage (KS) 1, 2 and 4, corresponding to ages 7, 11 and 16 respectively. Cancer diagnosis will be identified from inpatient hospital records, using International Classification of Diseases, 10th Revision codes (ICD-10). We will investigate differences between CCS and their non-cancer peers in terms of their sociodemographic characteristics and describe trends in educational performances at all KSs, recorded Special Educational Needs and Disabilities (SEND) and school absences. Differences in KS4 (GCSE) performances between CCS and non-cancer peers will be quantified, according to and accounting for geographic region, sex, deprivation, ethnicity and birth characteristics. To assess whether cancer diagnosis disrupts academic trajectories, we will restrict analysis to those with KS2 attainment data and investigate KS4 performance. We will finally explore the influence of age at diagnosis on educational performance at KS4.

Ethics and dissemination

Ethics approval was granted by NHS Health Research Authority Research Ethics Committee (20/EE/0180). Findings will be shared with academics, policymakers, children and families affected by childhood cancer, and published in journals. Code/metadata will be shared on ECHILD GitHub repository.

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.

A longitudinal, population-based, record-linked natural experiment on the effects of extreme heat events on mental health in urban communities: a study protocol

Por: Chukwusa · E. · Vivaldi · G. · Baecker · L. · Bowerman · E. · Bridge · N. · Davidson · N. · de la Cruz · A. · Gasparrini · A. · Gibbons · J. · Guerry · A. · Hammoud · R. · Li · Y. · Lu · Y. · Mandle · L. · Osborn · D. · Rydstrom · A. · Smythe · M. · Stewart · R. · Tognin · S. · White · M. · Ya
Introduction

Studies suggest that extreme heat events can have negative effects on mental health. However, characterisation of these effects in urban communities remains limited, and few studies have investigated the potential modifying effects of demographic, clinical and environmental characteristics. The aim of this study is to address this knowledge gap and quantify the impacts of extreme heat on mental health, health service use and mental well-being in vulnerable urban populations.

Methods and analysis

In this multidisciplinary project, we will assess mental health outcomes in different populations by bringing together two distinct datasets: electronic health record (EHR) data on mental health service users and data from general public participants of Urban Mind, a citizen science project. We will use EHRs from the South London and Maudsley NHS Foundation Trust (SLaM) and the North London NHS Foundation Trust (NLFT), from six boroughs which collectively cover more than 1.8 million residents in Greater London, to capture mental health service use and mortality among people with existing diagnoses of mental illness across 2008–2023. We will use smartphone-based ecological momentary assessment data from Urban Mind to measure mental well-being in the general population (2018–2023). These datasets will be linked to high-resolution spatiotemporal data on temperature, fine and coarse particulate matter (PM2.5, PM10), nitrogen dioxide (NO2), Normalised Difference Vegetation Index (NDVI) and density of large mature tree canopy. We will employ novel quasi-experimental designs, including case time series and case-crossover analysis, to examine the impact of extreme heat on mental health and explore effect modification by sociodemographic, clinical and environmental factors, including air pollution and types of green space coverage. We will also develop a microsimulation model combined with the InVEST urban cooling model to assess and forecast the mental health and social care impacts of extreme heat events and the mitigation of these impacts by different green space coverage and pollution-reduction policies. With a core team composed of researchers, community organisations, industry partners and specialist policy experts, this project will consider lived experience, benefit from broad stakeholder engagement and address gaps in policy and practice.

Ethics and dissemination

Each component of this project has been approved by the relevant ethics committee (ref RESCM-22/23-6905 for Urban Mind, LRS/DP-23/24-41409 for the co-development of a screening tool, 23/SC/0257 for the SLaM EHRs, and 24/EE/0178 for the NLFT EHRs). Our dissemination plan includes peer-reviewed scientific articles, policy briefs, a practical guide on fostering ecological and human resilience at the neighbourhood level, and a technical guide for planting and improving the growing conditions of large canopy trees.

Rising to the challenges of research in multiple long-term conditions: health and social care research ecosystem approaches

Por: De Soyza · A. · Goodwin · V. A. · Roberts · K. · Masoli · J. · Mathews · J. · Wilding · J. · Nestor · G. · Bower · P.
Objective

The purpose of this article is to share insights from the National Institute for Health and Care Research Clinical Research Network (NIHR CRN) in delivering research for Multiple Long Term Conditions (MLTC) and to highlight lessons of wider relevance across the research ecosystem.

Key reflections

Designing health and care systems to be more responsive to the needs of people living with MLTC requires a considerable evidence base. When compared with research focused on a single disease area, research relating to MLTC raises unique considerations at the stages of planning, placing, and delivering research studies. Our article describes challenges associated with MLTC research outcomes and outlines different types of interventions to target MLTC, along with related research delivery considerations. Our article also raises important considerations for placing research in the most appropriate setting and highlights the vital role of robust feasibility studies, informed by the lived experience of patients and carers with MLTC, for ensuring that studies are conducted, recruited to, and completed in a timely and appropriate way.

Conclusion

Increasing the evidence base for the prevention and management of MLTC is a necessity for our health and care system. This presents novel challenges that require collaboration between multiple stakeholders. The UK benefits from a unique research infrastructure, including support for the stages of planning and delivery of health and care research. As the health and care system moves towards bringing care closer to patients and service users, the appropriate selection of the health and care settings and research sites in which to deliver MLTC research, in addition to understanding and removing barriers to recruitment and participation for people with MLTCs, are important considerations to enable us to collectively respond to this challenge.

Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagement

Por: Mottram · R. · Feltbower · R. · Jones · G. L. · Gelcich · S. · McLean · K. · Kelly · C. · Glaser · A.
Background

Childhood cancer treatment can cause subfertility in adulthood. Ovarian or testicular tissue preservation is a rapidly evolving field with significant potential benefits. However, the establishment of patient-centred reproductive survivorship pathways remains a challenge in clinical settings due to a lack of robust evidence to inform its development. Patient and public involvement and engagement (PPIE) consultation may help ensure that future studies align with patient needs and that tailored survivorship care pathways are developed for young people with preserved fertility tissue.

Aim

This PPIE consultation aimed to identify priority areas for future research that would support the development of a tailored survivorship care pathway for childhood cancer survivors who have preserved tissue for future fertility.

Methods

Recruitment occurred through national networks, including collaborations with advocacy groups such as Candlelighters and clinical networks. Data were collected via telephone or online unstructured interviews, with some supplementary email exchanges. Thematic analysis was used to identify emergent themes. The Guidance for Reporting Involvement of Patients and the Public (GRIPP)-2 guidelines were used to help guide PPIE.

Setting

An online focus group and/or a one-to-one interview with e-mail interactions.

Participants

In total, 12 unique participants took part in a focus group and/or interview. Participants included parents of children who had stored tissue, young adult cancer survivors with stored tissue and five clinicians from the leading National Health Service (NHS) centres in the UK.

Results

Six key themes emerged that highlighted unmet needs and priority areas for research: (1) Lack of communication and information; (2) unmet needs in follow-up care; (3) emotional impact and psychological support; (4) importance of patient and parental involvement; (5) desire for information and education; and (6) long-term concerns and support. Parents, young adults and healthcare clinicians found talking about fertility issues difficult. They noted that consistency of care, education resources and access to emotional support were important areas where improvements could be made. We used thematic analysis to help identify patterns in the data, and we used the Guidance for Reporting Involvement of Patients and the Public (GRIPP)-2 reporting guidelines for PPIE work.

Conclusions

PPIE provided valuable insights into the experiences of childhood cancer survivors with preserved fertility tissue, their parents and clinicians, highlighting priority areas to guide future research and ensure it addresses the concerns of care recipients. Our findings suggest that childhood cancer survivors who preserve tissue for future fertility need personalised follow-up care with information and psychological support. A larger sample of participants, studied using a qualitative research design, is needed to capture the full range of experiences, needs and preferences and to ensure that care is inclusive and relevant to the wider population.

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