Homecare workers needs and experiences in end of life care: rapid review.

BACKGROUND: Social homecare workers provide essential care to those living at home at the end of life. In the context of a service experiencing difficulties in attracting and retaining staff, we have limited knowledge about the training, support needs and experiences of this group. AIM: To gain a timely understanding from the international literature of the experience, training and support needs of homecare workers providing end-of-life care. METHODS: We conducted a rapid review and narrative synthesis using the recommendations of the Cochrane Rapid Reviews Methods Group. Building on a previous review, social homecare worker and end-of-life search terms were used to identify studies. Quality appraisal was conducted using a multimethods tool. DATA SOURCES: CINAHL and Medline databases (2011-2023; English language). RESULTS: 19 papers were included representing 2510 participants (91% women) providing new and deeper insights. Four themes were generated: (1) emotional support; homecare workers need to manage complex and distressing situations, navigating their own, their clients' and clients' family, emotions; (2) interaction with other social and healthcare workers; homecare workers are isolated from, and undervalued and poorly understood by the wider healthcare team; (3) training and support; recognising the deteriorating client, symptom management, practicalities around death, communications skills and supervision; (4) recognising good practice; examples of good practice exist but data regarding effectiveness or implementation of interventions are scant. CONCLUSIONS: Social homecare workers are essential for end-of-life care at home but are inadequately trained, often isolated and underappreciated. Our findings are important for policy-makers addressing this crucial challenge, and service providers in social and healthcare.

Correction: Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol.

[This corrects the article DOI: 10.1371/journal.pone.0291525.].

Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol.

BACKGROUND: Homecare workers provide essential care at home for people at end-of-life but are often poorly trained and supported. AIM: To explore the experiences and needs of homecare workers and the views of homecare clients and carers, and other community-based health and social care staff about the homecare worker role, including identification of good practice. METHODS: In this qualitative exploratory study, we will conduct 150 semi-structured interviews with homecare workers within three geographic English localities chosen for maximum socio-demographic variation. Eligible participants will be consenting adults providing care services (workers [n = 45], managers [n = 15] community practitioners [n = 30]), receiving care (clients thought to be in the last 6 months of life [n = 30], family carers [n = 15], or commissioners of homecare services supporting end-of-life care [n = 15]. Interviews may adopt a Pictor-guided or standard semi-structured approach according to their preference. Managers and commissioners can contribute to an online focus group if preferred. A range of recruitment strategies will be used, including through homecare agencies, local authorities, local NHS services, charities, voluntary sector groups and social media. Interviews and focus groups will be recorded, transcribed, anonymised, and analysed adopting a case-based approach for each geographic area within-case and then comparison across cases using reflexive thematic analysis. The design and analysis will be informed by Bronfenbrenner's Adapted Ecological Systems theory. This study is registered on the Research Registry (No.8613). CONTRIBUTION: We will provide evidence on ways to improve the experiences and address the needs of homecare workers in relation to caring for people nearing end-of-life. It will offer insight into good practice around supporting homecare workers including responding to their training and development needs. Findings will inform subsequent stages of an evaluation-phase study of a training resource for homecare workers.

Real-World Analysis of Durvalumab after Chemoradiation in Stage III Non-Small-Cell Lung Cancer.

The 2017 PACIFIC trial heralded the incorporation of routine adjuvant durvalumab following curative-intent chemoradiation for stage III non-small-cell lung cancer (NSCLC). However, carefully selected clinical trial populations can differ significantly from real-world populations, which can have implications on treatment toxicities and outcomes, making it difficult to accurately counsel patients. Consequently, we performed a real-world, retrospective analysis of outcomes and toxicities in 118 patients with stage III NSCLC treated with durvalumab after platinum-based chemoradiotherapy. The data were collected from patients who underwent treatment at a single, tertiary-level Canadian cancer centre from May 2018 to October 2020. The variables collected included patient demographics, treatment specifics, progression-free survival, overall survival, and immune-related adverse events (IRAE) from durvalumab. Descriptive statistics were used for toxicity analysis, and progression-free survival and overall survival estimates were calculated using the Kaplan-Meier method. The statistical analyses indicated a 64.4% (n = 76) toxicity rate, with a 21% (n = 25) toxicity rate of grade 3+ IRAEs. The most common documented IRAEs were pneumonitis (n = 44; 40%), followed by rash (n = 20; 18%) and thyroid dysfunction (n = 17; 15%). FEV1 and DLCO were not found to be associated predictors of pneumonitis toxicity. The median PFS and OS were estimated to be >1.7 years and >2.7 years, respectively.

Nationwide Study of Postlegalization Marijuana Use Among Patients With Epilepsy in Canada.

Background and Objectives: Patients with epilepsy have long sought alternatives to conventional antiseizure medications (ASMs) for the treatment of their epilepsy and to improve the significant side effect burden of ASMs and comorbidities. It was established before the legalization of marijuana in Canada in 2018 that many patients with epilepsy use marijuana to treat their seizures or for recreational purposes. However, there exists no current data on the prevalence and habits of marijuana use in the Canadian epilepsy population since legalization. Methods: We conducted a nationwide cross-sectional survey of patients recruited through health care providers or epilepsy organizations to investigate marijuana usage habits and perceptions. Results: From 395 responses obtained through the survey, 221 responses stated that they used marijuana within the past year. A history of seizures for more than 10 years was noted in 50.7% (n = 148) patients with generalized seizures being the most common type (n = 169; 57.1%). Most of them (n = 154; 52.0%) had tried 3 or more ASMs, and 37.2% (n = 110) used various other treatments (ketogenic diet, vagus nerve stimulation, or resective surgery) indicating a proportion with drug-resistant epilepsy. This subgroup was more likely to have started using marijuana for drug-resistant epilepsy (p < 0.001). Current marijuana use for epilepsy management was endorsed by 47.5% (n = 116). Marijuana was "somewhat" to "very" effective at reducing seizure frequency for 60.1% (n = 123). The main side effects of marijuana were impaired thinking (n = 40; 17.17%), anxiety (n = 37; 15.74%), and altered hunger (n = 36; 15.32%). Marijuana was used at least once daily by 70.3% (n = 168) with the median amount per week being 5.0 g (IQR = 1-10), and the preferred method of consumption was smoking (n = 83; 34.7%). The participants expressed concerns regarding financial strain (n = 108; 36.5%), lack of recommendation from a doctor (n = 89; 30.1%), and lack of information (n = 56; 18.9%) surrounding marijuana use. Discussion: This study reveals a high prevalence of marijuana use among patients with epilepsy living in Canada particularly when seizures are drug resistant. A significant proportion of patients reported improvement of seizures with marijuana use, consistent with previous studies. With the increased accessibility of marijuana, it is imperative that physicians are aware of marijuana usage habits among patients with epilepsy.

Mistaken Metastasis: Radiation-Induced Rib Fracture Mimicking Malignancy on Computerized Tomography Case Report.

A 62-year-old woman with a 40-pack-year smoking history and severe chronic obstructive pulmonary disease with early-stage right upper lobe non-small cell lung cancer (NSCLC) was treated with stereotactic ablative radiotherapy (SABR). Two years after treatment, a surveillance computerized tomography scan showed lesions of the posterior 4th and 5th ribs including expansion of the medulla that was unusual and of concern for possible malignant infiltration. A follow-up magnetic resonance imaging (MRI) scan revealed these lesions to be healing fractures post-radiotherapy. Although generally well tolerated, SABR is known to produce inflammatory and fibrotic changes both in-field and in organs at risk, and rib fractures are a well-established adverse event. MRI has high diagnostic accuracy and sensitivity for rib fractures and was able to rule out malignant spread. This case demonstrates the need for regular follow-up following SABR for early-stage NSCLC, as well as the challenge of interpreting indeterminate post-SABR radiography findings.

Which renal access technique for PCNL is more difficult to teach using simulation?

INTRODUCTION: Percutaneous nephrolithotomy (PCNL) is a challenging procedure that urology trainees should be familiar with during residency. Simulators, such as the PERC Mentor, allow the development of this competency in a safer, stress-free environment. There are two primary fluoroscopic methods of gaining percutaneous renal access: the triangulation method and the bull's eye method. Our goal was to assess which method is easier to teach novices by using the PERC Mentor simulator. A secondary goal was to assess differences in subjective and objective outcomes. METHODS: Fifteen simulator and procedure-naive medical trainees were randomized into two groups using a crossover, randomized study design. Participants were provided with written, video, in-person demonstrations and hands-on practice for each technique. They then performed each method and were assessed objectively using the PERC Mentor performance data report and subjectively using the PCNL global rating scale (GRS) scoring system. Statistical analysis was performed using Student's T-test and non-parametric Wilcoxon signed rank test. RESULTS: There was no statistical difference in the outcomes and complication rates between the two methods. The bull's eye method of obtaining percutaneous access was associated with a significant decrease in operative time (91 seconds vs. 128 seconds, p=0.03) and fluoroscopy time (87 seconds vs. 123 seconds, p=0.03) compared to the triangulation method. CONCLUSIONS: Teaching of both techniques was equally well acquired by students. Both techniques had similar outcomes; however, the bull's eye method was associated with less operative and fluoroscopy time when compared to the triangulation method among novices.

Sorrow on the Shoreline.

This essay describes 3 health care workers who unexpectedly encounter a patient in need.

More than signposting: Findings from an evaluation of a social prescribing service.

This paper presents findings from an evaluation of a social prescribing service, undertaken between January 2019 and December 2020. Data was collected through interviews and focus groups with a range of groups including social prescribing managers, link workers (LWs), referrers (GPs and social work practitioners), clients, Voluntary and Community Sector (VCS) agencies and groups. Thematic analysis of data was undertaken, and findings were presented in respect of clients' journeys into social prescribing; the support received from LWs; their onward journeys to VCS support. The findings highlight the challenges for individuals in contacting new agencies/groups and the importance of practitioner referral into and onwards from social prescribing, as well as buddying to support clients on initial agency visits. The depth of the LW role is highlighted, as well as the complexity of client circumstances, highlighting a need for 'more than signposting', and challenging the notion of self-referral as an indicator of motivation. Social prescribing has been positioned as amongst the solutions to the challenges of primary care. However, referrals from GPs were low and significantly outnumbered by those from social workers; this suggests a need to explore in greater depth the use of social prescribing by social workers, who have, to date, been absent from social prescribing research.

The interface between primary care and care homes: General Practitioner experiences of working in care homes for older people.

Supporting residents in care homes for older people is an important, though little studied, aspect of the General Practitioner (GP) role. This study explored GPs' experiences of working to support older people living in care homes, and the challenges and facilitators to providing effective care in this unique practice environment. A qualitative online survey was shared with GPs in England via Twitter and through Named Doctor for Safeguarding networks. This was available from October 2019-March 2020 and was completed by 58 GPs. Responses were analysed using inductive Thematic Analysis. Participants highlighted the complexity of care home residents' health, with multiple long-term conditions frequently reported. Furthermore, dementia and communication difficulties meant the GPs were often reliant on communication with others (staff and families). GPs had to navigate multiple relationships within care homes, including with residents, staff/managers, families and other healthcare practitioners, all of whom could have competing perspectives and priorities. Gaining access to information about resident health could be challenging, and was affected by staff continuity/discontinuity; lack of Wi-Fi access was also common. Care home organisation of and support for the visit was important. We conclude that care home work requires GP skills to meet resident healthcare needs, as well as to navigate multiple relationships. GPs are often reliant on others; this has important implications, both risking marginalising the resident voice, and in respect of recognising and reporting abuse.

The use of a bespoke website developed for people with dementia and carers: Users' experiences, perceptions and support needs.

Background: Current policy emphasises the role of digital technologies in facilitating the management of long-term conditions. While digital resources have been developed for carers, there has been little attention to their development for people with dementia. The Caregiverspro-MMD website was developed as a joint resource for people with dementia and carers, delivering access to information, informal content, games and peer support. Research Design and Methods: This study explored the experiences of dyads consisting of people with dementia and carers of using the website. Interviews and focus groups were conducted with 43 participants. Findings: Thematic analysis identified 10 subthemes grouped under three superordinate themes which highlight participants' experiences of and responses to the website functions; important aspects of the website design and delivery; and barriers to use. Discussion: Findings highlight the value of a credible information source which negated the need for arduous online searches, the pleasure associated with playing games and interacting with others online. However, participants were reluctant to share personal information online, preferring to create 'informal content' which celebrated everyday life, and were reluctant to 'friend' people online who they had not met in person. The importance of training and support to use the website was highlighted. Health problems, lack of interest or difficulties using technology, and time were all identified as barriers to use.

Developing a Hybrid Four-Prong Approach to Anatomical Education During the COVID-19 Pandemic.

During COVID-19, the anatomy faculty and students at Schulich School of Medicine and Dentistry observed strengths and weaknesses in their transition to online learning. A "four-prong" approach to teaching anatomy was developed. Asynchronous content modules were tailored to specific learning objectives, virtual labs were implemented to work through case-based applications, "live from the lab" review sessions provided the opportunity for interaction and integration, and finally, limited face-to-face laboratory sessions provided an opportunity for supervised consolidation with cadaveric specimens. Our approach may be used by other institutions to enhance anatomical education and student engagement.

Training people with dementia/cognitive impairment and their carers in the use of web-based supportive technologies (Innovative practice).

Little is known about the training and support people with dementia and their carers need to use digital solutions. This paper shares learning from a bespoke programme that successfully trained people with dementia or mild cognitive impairment and their informal carers to use a social networking website. This work was undertaken as part of the European Horizon 2020 Caregiverspro-mmd trial (ISRCTN15654731). The training methods described offer an improved understanding of how best to deliver digital skills training that meets the needs of a diverse client group. The effectiveness of the programme is evidenced with qualitative and quantitative data.

GPs' experience of safeguarding in care homes: what do they see and what do they do?

BACKGROUND: Abuse of older people in care homes is an on-going problem. GPs, as the most frequent practitioner group visiting care homes, have an important role in detecting and reporting abuse. However, there is little research about GPs' experiences of working in care homes and how they work to safeguard residents. AIM: To explore the challenges experienced by GPs working in this unique environment and how these impact on safeguarding. METHOD: An online survey collected qualitative data about GPs' experiences as visiting professionals to care homes, with an emphasis on safeguarding. A thematic analysis identified key themes. RESULTS: In total, 58 completed surveys were returned, with a range of practitioner experience represented (1-30 years). Approximately 70% were GP partners, with the remainder salaried and locum doctors. Over one third reported they had witnessed signs of definite or possible abuse within care homes. Emerging themes related to the complex care home context, in which residents had multiple health needs and GPs had to build multiple relationships with managers, carers, families, and residents. Difficulties in accessing information were reported; residents could not always provide information, GPs had to rely on others for information, and rarely had access to electronic records. CONCLUSION: GP work in care homes is a complex and skilled role, in which GPs encounter evidence of poor care and abuse. Key themes in respect of barriers and facilitators of good care were highlighted. The reliance on others for information and the need to build relationships with staff/managers may raise tensions in respect of safeguarding practice.

'A fifty mile round trip to change a lightbulb': An exploratory study of carers' experiences of providing help, care and support to families and friends from a distance.

While the role of carers has been widely investigated, the experiences of those who care from a distance have been little explored, especially in the United Kingdom. However, contemporary patterns of family life suggest that this may be a significant experience for many. This exploratory study employed an anonymous online survey, conducted April-November 2017, to collect data about specific issues (experiences, challenges and satisfactions) faced by carers living at a distance requiring at least 1 hr travel time (each way) from the person they support. One hundred and twenty-eight participant responses were analysed. Qualitative (thematic) analysis identified that 'distance carers' carry out multiple care tasks, both when with, and apart from, the person they care for. Distance creates specific challenges for carers who have to work to 'bridge the distance gap' and who cannot 'just drop in' and see the person they support. Distance further exposes carers to emotional, financial and temporal demands. The use of technologies or the availability of a wider support network may support distance carers, and some explore the viability of relocation. However, these potential support strategies were identified as 'fragile' and at risk of breaking down. Despite the challenges identified, distance carers also reported satisfactions derived from supporting their relative/friend. While the numbers of those providing distance care are unknown, this research suggests that this is a significant carer group, whose needs should be recognised in health and social care policy, practice and research.

The CAREGIVERSPRO-MMD Platform as an Online Informational and Social Support Tool for People Living With Memory Problems and Their Carers: An Evaluation of User Engagement, Usability and Usefulness.

People living with dementia or cognitive impairment (PwD) and their carers often have unmet needs for informational and social support postdiagnosis. Web-based platforms have the potential to address these needs, although few have been developed for use by both PwD and carers. The CAREGIVERSPRO-MMD platform was developed to provide both user groups with informational and peer-to-peer social support. Platform logging data were analyzed to assess the extent to which PwD (n = 37) and carers (n = 37) engaged with the platform and its social/informational features in their daily lives. Participants also provided feedback on the usefulness and usability of the platform. The majority of PwD and carers found the platform and its social/informational features useful and usable, and significant subsets of both groups utilized the platform regularly. However, carers engaged with the informational and social features to a greater extent than PwD, and users highlighted that PwD typically required regular support to use the platform.

Distinct Function-Related Molecular Profile of Adult Human A2B5-Positive Pre-Oligodendrocytes Versus Mature Oligodendrocytes.

Remyelination in the human CNS is ascribed to progenitor cells rather than previously myelinating oligodendrocytes (OLs). The ganglioside-recognizing antibody A2B5 has been used to isolate putative progenitor cells, whose in vitro features resemble cells labeled as "pre-oligodendrocytes." Here, we compare the transcriptional profiles of adult human brain-derived A2B5 antibody-selected cells (A+) after initial isolation (day in vitro (DIV1)) and after DIV6, with nonselected (A-) cells (mature OLs), with regard to their differentiation state and functional properties. While a number of previously recognized progenitor associated genes, specifically PTPRZ1 and PDGFRα, were upregulated in the A2B5+ population, a number of such genes were comparably expressed in the mature OLs, as were mature myelin genes. Additional progenitor-related genes were upregulated in the A+ population. We show that A2B5+ cells have greater capacity to ensheath nanofibers, a model of myelination potential; consistent with this, ingenuity pathway analysis indicated that A+ cells had upregulated expression of genes within cell growth and cell signaling pathways. Differential expression of cell death/survival pathways complements previous functional studies showing their increased susceptibility to metabolic stress. At DIV6, we observed significantly fewer differentially expressed genes; suggestive of cell maturation occurring in vitro, indicating the complexity in comparing in vitro and in situ cell properties.