Search results for ‘Subject term:"palliative care"’ Sort:
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The role of healthcare support workers in providing palliative and end-of-life care in the community: a systematic literature review
- Authors:
- HERBER Oliver R., JOHNSTON Bridget M.
- Journal article citation:
- Health and Social Care in the Community, 21(3), 2013, pp.225-235.
- Publisher:
- Wiley
Despite the widespread use of Health Care Support Workers (HCSWs) in providing palliative and end-of-life care, there is little information available about their contributions towards supporting patients who want to be cared for at home or to die at home. Between January and April 2011, a systematic review was conducted to address two questions: (i) What particular tasks/roles do HCSWs perform when caring for people at the end of life and their families to comply with their desire to remain at home?; (ii) What are the challenges and supporting factors that influence HCSWs’ ability to provide palliative and end-of-life care in the community? Databases searched for relevant articles published between 1990 until April 2011 included CINAHL, EMBASE, PsychINFO, British Nursing Index, Web of Science, Medline and ASSIA. In total, 1695 papers were identified and their titles and abstracts were read. Ten papers met the eligibility criteria of the study. After the methodological quality of the studies was appraised, nine papers were included in the review. Judgements regarding eligibility and quality were undertaken independently by the authors. The findings indicate that HCSWs invest a great deal of their time on emotional and social support as well as on assisting in the provision of personal care. They are also involved in providing care for the dying, respite care for family members and offer domestic support. Although it is important to acknowledge the many positive aspects that HCSWs provide, the findings suggest three challenges in the HCSWs role: emotional attachment, role ambiguity and inadequate training. Support factors such as informal peer grief-support groups, sense of cohesiveness among HCSWs and task orientation enabled HCSWs to overcome these challenges. To conclude, induction and training programmes, a defined period of preceptorship, appropriate support, supervision and clearly defined role boundaries may be helpful in reducing the challenges identified in HCSWs’ roles. (Publisher abstract)
A discourse of silence: professional carers reasoning about death and dying in nursing homes
- Authors:
- ÖSTERLIND Jane, et al
- Journal article citation:
- Ageing and Society, 31(4), May 2011, pp.529-544.
- Publisher:
- Cambridge University Press
In nursing homes, death and dying are a common reality for both the residents and the staff. How death and dying is articulated in such a context, and the actions that take place there, constitute a discourse in which staff interpret and understand their work. The aim of this study was to explore the discourse of death and dying in nursing homes from the perspective and understanding of the staff. The study draws on Foucault's discourse analysis. Five focus-group discussions were held with 28 staff from 4 different nursing homes in Sweden. The staff were asked to share their thoughts about and experiences of death, dying and end-of-life care of older people. The findings show that the discourse had 3 characteristics: dying was silent and silenced; emotions were pushed into the background; and attentiveness to death arose after the moment of the elderly person's death. The discourse was characterised by a movement between avoiding and confronting death, the main focus being on avoidance. The article concludes that an alternative way of thinking is possible, where life and death are intertwined and equally supported. One way to achieve this could be to instil the philosophy of palliative care in nursing homes, including training and support for the staff in their work.
End-of-life care for people with intellectual disabilities: paid carer perspectives
- Authors:
- RYAN Karen, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(3), May 2011, pp.199-207.
- Publisher:
- Wiley
An increasing number of intellectual disability staff are now expected to care for service users towards the end-of-life. This study aimed to examine staff experiences of caring for a person with intellectual disabilities with palliative care needs and to explore the effects of this on staff. A total of 64 individuals from intellectual disability services working in different disciplines and a range of work settings took part in 12 focus groups. Interviews were analysed using framework analysis. The findings indicated that the participants were strongly motivated to provide high quality palliative care and felt the experience enriched practice. However, they considered themselves to be inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end-of-life care decision making was challenging; when staff felt ‘pushed out’ by relatives; and when staff did not have sufficient support or time to provide care or mourn the loss of service users. The study draws attention to areas where strategies should be developed to support staff in order to improve the quality of palliative care provided to people with intellectual disabilities.
Care provided by generalists at the end of life: scoping exercise on research priorities: research summary
- Author:
- NATIONAL INSTITUTE FOR HEALTH RESEARCH. Service Delivery and Organisation Programme
- Publisher:
- National Institute for Health Research. Service Delivery and Organisation Programme
- Publication year:
- 2007
- Pagination:
- 6p.
- Place of publication:
- London
This research summary presents an overview of the findings from a scoping exercise (a literature review and a consultation exercise) to identify the current evidence base and priorities for further research to improve understanding of generalist care at the end of life. The project was commissioned by the National Institute for Health Research Service Delivery and Organisation Programme (SDO) and led by Professor Irene Higginson at King’s College London.
Meeting the cancer information needs of people with learning disabilities: experiences of paid carers
- Authors:
- JONES Amelia, et al
- Journal article citation:
- British Journal of Learning Disabilities, 35(1), March 2007, pp.12-18.
- Publisher:
- Wiley
This paper reports on one of the findings of a small study that aimed to explore how people with learning disabilities accessed and were supported to use a pictorial cancer information book. Five people with learning disabilities who were affected by cancer and their paid carers participated in the study. Support staff in the study were the people who provided cancer information for people with learning disabilities. They struggled with this task, particularly when the person needed information about cancer that exceeded the staff's own knowledge and experience. Most were also inexperienced in dealing with the emotions around cancer. There was little evidence that the support staff received any support themselves, either from cancer professionals or from within their own organizations. The authors conclude that although the findings of this study are based on a small number of people, collaboration is required between health and learning disability services. Further more, in aid of collaboration, staff in learning disability services require education programmes to enhance their skills in facilitating the health needs of people with learning disabilities.
Staff training interventions to improve end-of-life care of nursing home residents: a systematic review
- Authors:
- LAMPPU Pauli J., PITKALA Kaisu H.
- Journal article citation:
- Journal of the American Medical Directors Association, 22(2), 2021, pp.268-278.
- Publisher:
- Elsevier (for the American Medical Directors Association)
Objectives: The aim was to review evidence from all randomized controlled trials (RCTs) using palliative care education or staff training as an intervention to improve nursing home residents' quality of life (QOL) or quality of dying (QOD) or to reduce burdensome hospitalizations. Design: A systematic review with a narrative summary. Setting and Participants: Residents in nursing homes and other long-term care facilities. Methods: The researchers searched MEDLINE, CINAHL, PsycINFO, the Cochrane Library, Scopus, and Google Scholar, references of known articles, previous reviews, and recent volumes of key journals. RCTs were included in the review. Methodologic quality was assessed. Results: The search yielded 932 articles after removing the duplicates. Of them, 16 cluster RCTs fulfilled inclusion criteria for analysis. There was a great variety in the interventions with respect to learning methods, intensity, complexity, and length of staff training. Most interventions featured other elements besides staff training. In the 6 high-quality trials, only 1 showed a reduction in hospitalizations, whereas among 6 moderate-quality trials 2 suggested a reduction in hospitalizations. None of the high-quality trials showed effects on residents' QOL or QOD. Staff reported an improved QOD in 1 moderate-quality trial. Conclusions and Implications: Irrespective of the means of staff training, there were surprisingly few effects of education on residents' QOL, QOD, or burdensome hospitalizations. Further studies are needed to explore the reasons behind these findings. (Edited publisher abstract)
Homeless palliative care toolkit
- Authors:
- KENNEDY Peter, et al
- Publication year:
- 2018
- Place of publication:
- London
An online toolkit to help staff working with homeless people who have advanced ill health and are potentially approaching end of life. The toolkit has been adapted from a resource pack previously developed by St Mungo’s and Marie Curie, using findings from a large piece of collaborative research. Each section contains resources, tools and activity worksheets to help in planning and providing person-centred, multi-agency care for homeless people. Sections cover: identifying clients of concern; supporting clients' palliative and end of life care; multi-agency working and person-centred care; communicating about what matters to clients; and bereavement. It also includes a section for staff covering self-care and strategies for managing stress. The research found that one of the reasons people are dying without support is that they are not recognized to be suffering from a terminal illness. The toolkit suggests that ‘concern about a client’s deteriorating health’ should act as a trigger for action, rather than waiting for a palliative or terminal diagnosis. The toolkit was created by a research partnership between Pathway, Marie Curie Palliative Care Research department (UCL), St Mungo’s and Coordinate My Care. (Edited publisher abstract)
Supporting Solace: palliative and end of life care data report 2017
- Author:
- SCOTTISH CARE
- Publisher:
- Scottish Care
- Publication year:
- 2017
- Pagination:
- 12
- Place of publication:
- Edinburgh
This report summarises the findings of a survey of social care organisations in the independent sector providing palliative and end of life care in Scotland. Undertaken as part of the Supporting Solace research project, the survey covered the areas of training, support, commissioning and partnership. A total of 45 Scottish Care member organisations responded to the survey, including residential care homes, nursing care homes, specialist care homes, care at home and housing support services. The findings show that palliative and end of life care is a key aspect of the service provided by the independent care sector and that the majority of front line staff provide palliative and end of life care as part of their job. Challenges to providing good quality services identified included difficulties in the recruitment and retention of staff, unmet training needs, and the way services are commissioned. Multi-disciplinary working and the valuing the sector were seen to contribute to a high quality service. (Edited publisher abstract)
Providing end-of-life care in disability community living services: an organizational capacity-building model using a public health approach
- Authors:
- GRINDROD Andrea, RUMBOLD Bruce
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(6), 2017, pp.1125-1137.
- Publisher:
- Wiley
Background: There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of people with intellectual disabilities, particularly those in disability community living services. Methods: A mixed-methods approach was used. Quantitative data were gathered through a survey of disability support staff working in government-managed community living services in the Australian state of Victoria. These quantitative data informed the collection of qualitative data through focus groups and research interviews. A public health palliative care framework provided the basis for developing an organisational change model from the consolidated data. Results: There is a strong relationship between organisational structure and culture, and both influence end-of-life practice in community living services. Barriers to good practice arise from the differing attitudes of paid carers involved, and from uncoordinated approaches reflecting misaligned service systems in the disability and palliative care fields. Organisational reorientation is crucial to achieving sustainable change that will support healthy dying. Conclusions: End-of-life care requires the collaboration of disability and palliative care services, but for care to achieve palliative care goals, the collaboration must be led by disability services. The authors outline here an organisational model they have developed from public health principles to manage end-of-life care in community living services. (Edited publisher abstract)
‘Powerlessness’ or ‘doing the right thing’ – Moral distress among nursing home staff caring for residents at the end of life: an interpretive descriptive study
- Authors:
- YOUNG Amanda J., FROGGATT Katherine, BREARLEY Sarah G.
- Journal article citation:
- Palliative Medicine, 31(9), 2017, pp.853-860.
- Publisher:
- Hodder Arnold
Aim: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. Methods: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. Setting: Four nursing homes in one large metropolitan area. Participants: A total of 16 staff: 2 nurse managers, 4 nurses and 10 care assistants.Findings: Participants described holding ‘good dying’ values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, general practitioners, and colleagues. These led staff to be able to ‘do the right thing’ or to experience ‘ powerlessness’, which could in turn lead to staff perceiving a ‘bad death’ for residents.Conclusion: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to ‘do the right thing’ and unable to influence care decisions in order to avoid a ‘bad death’. This powerlessness is the nature of their moral distress. (Publisher abstract)