BackgroundDespite access to quality care at the end-of-life (EOL) being considered a human right, it is not equitable, with many facing significant barriers. Most research examines access to EOL care for homogenous ‘normative’ populations, and as a result, the experiences of those with differing social positioning remain unheard. For example, populations experiencing structural vulnerability, who are situated along the lower rungs of social hierarchies of power (e.g., poor, homeless) will have unique EOL care needs and face unique barriers when accessing care. However, little research examines these barriers for people experiencing life-limiting illnesses and structural vulnerabilities. The purpose of this study was to identify barriers to accessing care among structurally vulnerable people at EOL.MethodsEthnography informed by the critical theoretical perspectives of equity and social justice was employed. This research drew on 30 months of ethnographic data collection (i.e., observations, interviews) with structurally vulnerable people, their support persons, and service providers. Three hundred hours of observation were conducted in homes, shelters, transitional housing units, community-based service centres, on the street, and at health care appointments. The constant comparative method was used with data collection and analysis occurring concurrently.ResultsFive significant barriers to accessing care at EOL were identified, namely: (1) The survival imperative; (2) The normalization of dying; (3) The problem of identification; (4) Professional risk and safety management; and (5) The cracks of a ‘silo-ed’ care system. Together, findings unveil inequities in accessing care at EOL and emphasize how those who do not fit the ‘normative’ palliative-patient population type, for whom palliative care programs and policies are currently built, face significant access barriers.ConclusionsFindings contribute a nuanced understanding of the needs of and barriers experienced by those who are both structurally vulnerable and facing a life-limiting illness. Such insights make visible gaps in service provision and provide information for service providers, and policy decision-makers alike, on ways to enhance the equitable provision of EOL care for all populations.

No abstract

The collapsed BRAT risk levels show moderately good inter-rater reliability over clinical judgement alone. This study provides introductory evidence of a tool that can be used both prior to and following a death and, in conjunction with professional judgment, can assess the likelihood of bereavement complications.

Objective: The aim of the current exploratory study was to investigate the impact for care home staff of working with people with dementia at the end of life and to explore how they cope with this aspect of their work. With UK policy encouraging death in the place of residence, rather than hospital, more people with dementia are dying in care homes.Method: A qualitative approach was employed; 20 care home staff working in five English care homes were interviewed. Thematic Analysis was used to analyse the data.Results: Care home staff found the external demands on them and difficulties associated with interacting with people with dementia sometimes challenging, stressful and anxietyprovoking, particularly as residents approached end of life. Emotional aspects of caring for dying residents were sometimes heightened by close attachments with residents and their families. Staff were able to recognise these unmet needs and identified a need for further training and emotional support to manage these stressors.Conclusions: This study revealed rich and complex understanding of the practice dimensions of caring for people with dementia at the end of life and the impact these have on staff. There is a need to develop effective psychosocial interventions that focus on emotional support for care home staff. There will be challenges in providing this in employment settings that are generally low paid, low status, have high turnover and are reliant on temporary or migrant staff, where training is not rewarded, mandatory or culturally valued. 4 IntroductionCare homes are increasingly caring for frail older people at the end of their lives, and older people with cognitive impairment or dementia are more likely to die in care homes than in other settings (Moriarty, Rutter, Ross & Holmes, 2012; National End-of-life Care Intelligence Network, 2013). In recent years in England, there are increasing ambitions to avoid premature and unnecessary moves to hospital in the last weeks of life (Murtagh et al. 2012).Current government policy encourages people to 'die in place' (Department of Health, 2013; Leadership Alliance for the Care of Dying People, 2014); consistent with wishes of many families (Bayer, 2006). Research has focused on ways in which care home staff make end-oflife care decisions (e.g. Goodman et al., 2010; Moriarty, Rutter, Ross & Holmes, 2012).However, there is a need to understand the impacts on care home staff of caring for dying residents who have dementia in order to better support these workers.In England, care home staff are among the lowest paid employees (Resolution Foundation, 2015). Staff working in care homes are often under pressure in their work and experience both psychological and physical strain, including injuries and depression (Walsh, 2006;Zimmerman et al., 2005). There is high staff turnover in some care homes (Franklin, 2014) and staff working with people with dementia are less likely to be trained than other care workers (Hussein and Manthorpe 2011).Furthermore, staff working with...

This study examined activities related to the provision of psychosocial care by counsellors in the hospice/palliative care setting. A qualitative design using written reports was used in an urban Canadian hospice/palliative care program. A convenient sample of 13 counsellors indicated the activities they typically performed in their work with patients and families. Thematic analysis of the activities directly related to patient and family care was performed and then validated by presenting these activities back to the counsellors in a group setting. Seven themes resulted: 1) companioning; 2) psychosocial assessment, planning, and evaluation; 3) counselling interventions; 4) facilitation and advocacy; 5) patient and family education; 6) consultation and reporting; and 7) team support. These thematic findings confirmed those of previous studies and also highlighted two additional findings. Team support was seen as an activity that directly affected client care, and there was a strong emphasis on the activity of companioning the dying and their families. Also discussed are implications of these results, as well as suggestions for further research. Resume I Cette etude se penche sur les taches de travail des conseillers dispensant des services dans Ie cadre d'un programme de soins palliatifs dans un nopltal urbain au Canada. Ainsi, on a fait une etude de nature qualitative en utilisant les rapports ecrits comme mode de cueillette de donnees. Treize conseillers ont ete choisis et on leur a demande de repondre par ecrit adeux questions ouvertes, I'une portant sur les taches specifiquernent liees aux soins aux malades et, a leur famille et I'autre se rapportant plutot au travail. A partir des reponses, l'equlpe de recherche a fait I'analyse thematique des taches reliees aux soins des malades et leur famille et a de nouveau reuni Ie groupe de conseillers afin de leur presenter les resultats et les faire valider. Les conseillers ont regroupe ces taches selon sept themes principaux soient : 1) la presence physique; 2) l'evaluation psychosociale et la planification des interventions; 3) Ie conseil et les interventions; 4) la mediation et la representation; 5) l'education des patients et leur famille; 6) la consultation et les rapports; 7) Ie soutien dans l'equipe de soins. Ces conclusions, quant aux themes retenus, confirment les resultats d'etudes anterieures mais tout en attirant I'attention sur deux nouvelles thernatiques. Le soutien dans l'equipe a ete retenu comme I'un des themes ayant un impact sur les soins aux malades et on accordait beaucoup d'importance a un autre theme soit la presence physique aupres des mourants et leur famille. L'article se termine par une discussion sur les consequences de ces resultats et offre des suggestions pour de futures recherches.