Evaluation: Programme to Support Palliative and Hospice Care in the Republic of Ireland, Final Report

Investment in end-of-life care has made Ireland a world leader in advancing palliative and hospice care but regional inequities persist, according to an evaluation by Professor Mary McCarron and colleagues at Trinity College Dublin.This evaluation examined The Atlantic Philanthropies' End of Life programme -- which aimed to improve the care and quality of life for patients dying from an incurable illness and to ensure they and their families received excellent end-of-life care and services. From its first grant in 2004 through its final grant in 2010, Atlantic invested 25 million in the programme

A photographic essay on landslides across southeastern New South Wales triggered by the rainfall events of 2022

Eastern Australia has experienced a significant magnitude rainfall event of extended duration in the first 7 months of 2022. Across the east coast of New South Wales (NSW) a series of troughs and East Coast Lows occurred during a La Nina weather cycle bringing above average rainfall to the region. As this first half of 2022 La Nina event was drawing to a close the Indian Ocean Dipole entered a negative phase which coincided with another intense East Coast Low in early July 2022 impacting the Illawarra region of NSW. These events caused widespread flooding and significant landslide damage to road and rail infrastructure across the state networks and local government infrastructure across NSW. During this extended wet period in the first 7 months of 2022 more than 200 landslides have been recorded across the Illawarra, Southern Highlands and Blue Mountains regions of NSW whilst many more have occurred across the north coast region. This paper presents a brief and albeit preliminary summary of the rainfall and provides a series of photographs with very brief descriptions of some of these landslide events within southeastern NSW. The intent of the paper is to provide early guidance to AGS members of the nature and form of landslides that have occurred across the Illawarra region. This paper does not discuss the dual fatality resulting from the Wentworth Falls area rockfall of the 5th April

Equity and the financial costs of informal caregiving in palliative care: a critical debate.

BACKGROUND: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. METHODS: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. RESULTS: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. CONCLUSIONS: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving

“Take more laxatives was their answer to everything.”:A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care

Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this

Barriers and facilitators perceived by registered nurses to providing person-centred care at the end of life. A scoping review

Background: Registered nurses are increasingly expected to provide person-centred end-of-life care. However, there is a gap between patients's needs and the capacity of nurses to meet the existing recommendations on provision of this care. Identifying the relevant barriers and facilitators can inform the development of strategies to support person-centred nursing. Aim: To identify registered nurses perceived barriers and facilitators in terms of providing person-centred end-of-life care. Method: A scoping review was conducted according to the 2005 guidelines proposed by Arksey and O`Malley. The databases Medline, CINAHL, PsycINFO, Cochrane, Web of Science and Embase were searched using the period 2000 to 2018. Empirical studies, literature reviews and studies focusing on the experiences of generalist nurses providing end-of-life care were included. The selected articles were independently reviewed by two researchers. Results: A total of 2,126 publications were identified, with 26 retained after applying the eligibility criteria. Four barriers to providing person-centred care were identified: knowledge of end-of-life care; communication skills; coping strategies; and teamwork. Three main facilitators were identified: knowing the person in a holistic way; nurses¿ self-knowledge; and the development of a good nurse-person relationship. Organisational and managerial support also emerged to be important. These findings are reflected in the construct of McCormack and McCance¿

Diagnosing dying: an integrative literature review

Background To ensure patients and familiesreceive appropriate end-of-life care pathways andguidelines aim to inform clinical decision making.Ensuring appropriate outcomes through the useof these decision aids is dependent on timelyuse. Diagnosing dying is a complex clinicaldecision, and most of the available practicechecklists relate to cancer. There is a need toreview evidence to establish diagnostic indicatorsthat death is imminent on the basis of needrather than a cancer diagnosis.Aim To examine the evidence as to howpatients are judged by clinicians as being in thefinal hours or days of life.Design Integrative literature review.Data sources Five electronic databases(2001–2011): Cochrane Central Register ofControlled Trials (CENTRAL) on The CochraneLibrary, MEDLINE, EMBASE, PsycINFO andCINAHL. The search yielded a total of 576 hits,331 titles and abstracts were screened, 42papers were retrieved and reviewed and 23articles were included.Results Analysis reveals an overarching theme ofuncertainty in diagnosing dying and twosubthemes: (1) ‘characteristics of dying’ involvedying trajectories that incorporate physical,social, spiritual and psychological decline towardsdeath; (2) ‘treatment orientation’ where decisionmaking related to diagnosing dying may remainfocused towards biomedical interventions ratherthan systematic planning for end-of-life care.Conclusions The findings of this review supportthe explicit recognition of ‘uncertainty indiagnosing dying’ and the need to work withand within this concept. Clinical decision makingneeds to allow for recovery where that potentialexists, but equally there is the need to avoid futile intervention

Caring international research collaborative: A five-country partnership to measure perception of nursing staffs' compassion fatigue, burnout, and caring for self

Partnering in research across disciplines and across countries can be challenging due to differing contexts of practice and culture. This study sought to demonstrate how central constructs that have application across disciplines and countries can be studied while concurrently considering context. Groups of nurses from Botswana, Ireland, Israel, New Zealand, and Spain partnered to identify how to measure the constructs of caring for self, burnout, and compassion fatigue, replicating a study by Johnson (2012), who found that caring for self had a moderately strong negative relationship with both compassion fatigue and burnout. While these constructs were of interest to all five groups, the conversation of contextual influences varied. All five groups used the same instruments to measure the central constructs. Levels of burnout and compassion fatigue varied by country but were moderated by caring for self. Partnering across countries made it possible to understand that caring for self moderates the negative impact of burnout and compassion fatigue in all five countries. This study gives insight into methods for partnering across disciplines and contexts

GM-CSF Increases Mucosal and Systemic Immunogenicity of an H1N1 Influenza DNA Vaccine Administered into the Epidermis of Non-Human Primates

Background: The recent H5N1 avian and H1N1 swine-origin influenza virus outbreaks reaffirm that the threat of a worldwide influenza pandemic is both real and ever-present. Vaccination is still considered the best strategy for protection against influenza virus infection but a significant challenge is to identify new vaccine approaches that offer accelerated production, broader protection against drifted and shifted strains, and the capacity to elicit anti-viral immune responses in the respiratory tract at the site of viral entry. As a safe alternative to live attenuated vaccines, the mucosal and systemic immunogenicity of an H1N1 influenza (A/New Caledonia/20/99) HA DNA vaccine administered by particle-mediated epidermal delivery (PMED or gene gun) was analyzed in rhesus macaques. Methodology/Principal Findings: Macaques were immunized at weeks 0, 8, and 16 using a disposable single-shot particlemediated delivery device designed for clinical use that delivers plasmid DNA directly into cells of the epidermis. Significant levels of hemagglutination inhibiting (HI) antibodies and cytokine-secreting HA-specific T cells were observed in the periphery of macaques following 1-3 doses of the PMED HA DNA vaccine. In addition, HA DNA vaccination induced detectable levels of HA-specific mucosal antibodies and T cells in the lung and gut-associated lymphoid tissues of vaccinated macaques. Importantly, co-delivery of a DNA encoding the rhesus macaque GM-CSF gene was found to significantly enhance both the systemic and mucosal immunogenicity of the HA DNA vaccine. Conclusions/Significance: These results provide strong support for the development of a particle-mediated epidermal DNA vaccine for protection against respiratory pathogens such as influenza and demonstrate, for the first time, the ability of skindelivered GM-CSF to serve as an effective mucosal adjuvant for vaccine induction of immune responses in the gut and respiratory tract. © 2010 Loudon et al

Patterns of IgE responses to multiple allergen components and clinical symptoms at age 11 years

BackgroundThe relationship between sensitization to allergens and disease is complex.ObjectiveWe sought to identify patterns of response to a broad range of allergen components and investigate associations with asthma, eczema, and hay fever.MethodsSerum specific IgE levels to 112 allergen components were measured by using a multiplex array (Immuno Solid-phase Allergen Chip) in a population-based birth cohort. Latent variable modeling was used to identify underlying patterns of component-specific IgE responses; these patterns were then related to asthma, eczema, and hay fever.ResultsTwo hundred twenty-one of 461 children had IgE to 1 or more components. Seventy-one of the 112 components were recognized by 3 or more children. By using latent variable modeling, 61 allergen components clustered into 3 component groups (CG1, CG2, and CG3); protein families within each CG were exclusive to that group. CG1 comprised 27 components from 8 plant protein families. CG2 comprised 7 components of mite allergens from 3 protein families. CG3 included 27 components of plant, animal, and fungal origin from 12 protein families. Each CG included components from different biological sources with structural homology and also nonhomologous proteins arising from the same biological source. Sensitization to CG3 was most strongly associated with asthma (odds ratio [OR], 8.20; 95% CI, 3.49-19.24; P < .001) and lower FEV1 (P < .001). Sensitization to CG1 was associated with hay fever (OR, 12.79; 95% CI, 6.84-23.90; P < .001). Sensitization to CG2 was associated with both asthma (OR, 3.60; 95% CI, 2.05-6.29) and hay fever (OR, 2.52; 95% CI, 1.38-4.61).ConclusionsLatent variable modeling with a large number of allergen components identified 3 patterns of IgE responses, each including different protein families. In 11-year-old children the pattern of response to components of multiple allergens appeared to be associated with current asthma and hay fever but not eczema