Search results for ‘Subject term:"palliative care"’ Sort:
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Using evidence for transformation change for homecare workers and service users in palliative and end of life care
- Authors:
- IRISS, NHS EDUCATION FOR SCOTLAND
- Publisher:
- IRISS
- Publication year:
- 2017
- Pagination:
- 4
- Place of publication:
- Glasgow
Brings together evidence from research, practice, and improvement from three linked reports from the NHS Education for Scotland Networked Evidence Search and Summary Service on what works in supporting care at home staff providing palliative and end of life care. It reports that the role of care at home staff is emotionally and practically demanding, yet there is often little or no training or support. The report highlights what staff need to support them and the actions that need to be put in place. These include suggestions to improve staff access to information; learning and development needs; and service improvement in the areas of multi-agency communication and bereavement support. (Edited publisher abstract)
The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada
- Authors:
- CHAI Huamin, et al
- Journal article citation:
- Health and Social Care in the Community, 22(1), 2014, pp.30-39.
- Publisher:
- Wiley
Little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. This Canadian study examines the magnitude and share of unpaid care costs (ie by family caregivers) in total healthcare costs for home-based palliative care patients, from a societal perspective and also considers the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by palliative care services in Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to caregiving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component – $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. The share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. (Edited publisher abstract)
Using 'gold standards' to raise awareness of palliative care
- Author:
- COLLINS Frances
- Journal article citation:
- Nursing Times, 30.11.04, 2004, pp.30-31.
- Publisher:
- Nursing Times
Reports on an evaluation of the gold standards framework, which is a practice-based system aimed at improving the organisation and quality of palliative care services for patients who are at home in their last 12 months of life. The aim is for patients to receive a better quality service with greater control over their care and an increased likelihood that they will die where they choose.
Living in liminality: being simultaneously visible and invisible: caregivers' narratives of palliative care
- Authors:
- LYCKHAGE Elisabeth Dahlborg, LINDAHL Berit
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 9(4), 2013, pp.272-288.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
Palliative care is an integral part of care and takes place in many settings, including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. The findings are discussed in the light of the theoretical concepts of liminality, lived body, and power. A potential impending risk exists of being abandoned when one is the primary caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken, needs. This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered, including the individual's history, family and loved ones, and individual strengths and weaknesses. (Publisher abstract)
Commitment to care: a grounded theory of informal hospice caregivers’ development as symptom managers
- Author:
- WASHINGTON Karla
- Journal article citation:
- Qualitative Social Work, 12(3), 2013, pp.358-371.
- Publisher:
- Sage
Individuals receiving home-based hospice services often rely upon family members and friends to serve as informal caregivers responsible for managing the full range of emotional, psychological, spiritual, and physical symptoms. The purpose of this in-depth, grounded theory study was to develop a theoretical model of the processes by which informal hospice caregivers, who often lack formal training, acquire knowledge and skills related to symptom management. Findings were derived from data collected from 15 hospice caregivers who participated in at least one interview. Seven of the 15 participants also participated in a follow-up interview. Findings indicate that, motivated by a commitment to care, caregivers seek competence in symptom management by learning/doing, consulting with professionals, and personalizing their caregiving approach. The ongoing nature of the development of symptom management knowledge and skills provides multiple opportunities for intervention by hospice social workers and other members of the interdisciplinary team. (Edited publisher abstract)
Home-care utilization within the year of death: trends, predictors and changes in access equity during a period of health policy reform in British Columbia, Canada
- Authors:
- BRACKLEY M. E., PENNING M. J.
- Journal article citation:
- Health and Social Care in the Community, 17(3), May 2009, pp.283-294.
- Publisher:
- Wiley
Healthcare policy reforms enacted through the 1990s explicitly endorsed expanded community care and enhanced equitable access to care. This study examines end-of-life home-care service utilization during this time period. A population-based, retrospective study of home-care utilization by adults 50 years of age and older in British Columbia, Canada, who died in the last 6 months of each year from 1991 to 2000 (n = 98 327) was used. Data were drawn from the British Columbia Linked Health Data resource; both receipt and extent of care were examined, using logistic and standard regression models. Independent variables included year of death, age, gender, area of residence and income quintile. Year of death was not significantly associated with receipt of home care in general. However, the odds of receiving home support services declined significantly over time, while annual home support hours increased. In contrast, receipt of home nursing increased, while annual home nursing visits did not change. Social factors frequently emerged as significant predictors of both receipt and extent of care. Only limited evidence for interactions between these factors and year of death acting as determinants of receipt or extent of service were found. Results suggest that end-of-life home care services did not expand, but instead were reallocated and intensified over the 1990s. As well, there was little evidence to suggest enhanced equity in access to care.
A national survey of home-based care kits for palliative HIV/AIDS care in South Africa
- Authors:
- MADUDE Z. A., et al
- Journal article citation:
- AIDS Care, 20(8), September 2008, pp.931-937.
- Publisher:
- Taylor and Francis
The objective of this study was to assess home-based care (HBC) kits and programs in South Africa to evaluate the feasibility of scaling up kit production and distribution. South African HBC organizations received structured questionnaires; key informant interviews and a literature review were completed to assess systems for production, distribution and supply of HBC kits. Meetings with stakeholders were held in two Provinces to share and analyze the study findings. The study team distributed questionnaires to 466 organizations and conducted interviews with representatives from 45 organizations, the Provincial Department of Health (DoH) and manufacturers of kits. All identifiable HBC organizations in South Africa were included in the survey. As a result 215 HBC organizations returned questionnaires; including non-governmental organizations (56%), community-based organizations (32%) and organizations affiliated with government health departments. Two types of kits were available: a home kit and a professional kit. The demand for HBC kits exceeded availability, kit contents and availability varied considerably and the supply chain was irregular. Kit production and distribution systems were fragmented. Replenishment of kit items was problematic. End-users are mostly caregivers who have not received adequate training on their use. The study shows that substantial work has been done by HBC organizations in South Africa to respond to the need for palliative care supplies within resource constraints. The growing demand for kits exceeds the supply. There is a need to improve the supply chain management of HBC kits, strengthen referral systems and links between community-based organizations and government departments, expand training opportunities for care givers, and develop monitoring and evaluation systems.
Moving toward Medicare home health coverage for people with Alzheimer’s disease
- Author:
- CABIN William D.
- Journal article citation:
- Journal of Gerontological Social Work, 51(1/2), 2008, pp.77-86.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Over 75% of care for people in the USA with Alzheimer’s disease or other dementias is provided by family members, imposing a significant personal burden in terms of stress, depression, social isolation and other problems. Despite the existence of reputable evidence in favour of the benefits of home- and community-based palliative care provision, this is not incorporated within Medicare which is dominated by the curative, drug-focused medical model. As a result, there are significant unmet client and carer needs, and high costs to all parties including Medicare when, for example, premature admission to institutional care follows the failure to provide any support for carers. There is a strong case for the federal government to fund a demonstration project to test the efficacy of palliative home care for improving quality of life and reducing costs for Medicare clients with Alzheimer’s disease, and for their carers. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Home-based palliative care in Sydney, Australia: the carer's perspective on the provision of informal care
- Authors:
- ZAPART Siggi, et al
- Journal article citation:
- Health and Social Care in the Community, 15(2), March 2007, pp.97-107.
- Publisher:
- Wiley
The provision of home-based palliative care requires a substantial unpaid contribution from family and friends (i.e. informal care). The present cross-sectional descriptive study, conducted between September 2003 and April 2004, describes this contribution and the impact it has on those providing informal care. The participants were 82 informal carers of patients registered with two community palliative care services in Sydney, Australia (40% of eligible carers). Carers were interviewed to assess the care recipient's care needs, the care provided by the informal carer and the health status of the carer (using the 36-Item Short Form Health Survey). A number of open-ended questions asked about the impact of providing care and the type of support that carers would find helpful. Most carers reported that care recipients required help with household tasks and many needed assistance with personal activities of daily living, taking medications and organisational tasks. In the majority of cases, the principal carer provided all or most of this help. Although, on average, the physical health of carers was similar to that of the Australian population, their mental health scores were lower. Many carers reported effects on social and family relationships, restrictions on their participation in work and leisure activities, and a range of emotional reactions to their caring situation. The support carers said they would like included information and advice, in-home respite, help with household tasks, and financial support. The present study supports the view that effective support for carers must recognise the pre-existing relationship between carer and recipient, and the differing needs of individual carers.
Home palliative care professionals perception of challenges during the Covid-19 outbreak: a qualitative study
- Authors:
- FRANCHINI Luca, et al
- Journal article citation:
- Palliative Medicine, early cite April 2021,
- Publisher:
- Hodder Arnold
Background: Home palliative care services have played an essential role during the first wave of the SARS-CoV-2 outbreak by providing symptom control, drug procurement, and psychological support for frail patients and their families unable to leave their homes. Aim: To understand how home palliative care professionals were affected by the outbreak, describing changes and challenges in their daily work as well as their reactions to the Covid-19 pandemic in Italy. Design: Qualitative study conducted using telephone semi-structured interviews, with thematic analysis. Setting/participants: Thirty home care professionals working for an Italian non-profit organization which provides home palliative care for cancer patients and their families. Results: Three main themes were identified. The first theme showed both patient-related and practice-related challenges participants faced in their daily work, requiring the implementation of different communication methods and patient and family education on risk prevention. The second theme showed the perception of increased responsibility and being the only landmark for family played a decisive role in participants’ positive attitude. The third theme highlighted the participants’ perception of the critical role of a home care setting in this emergency situation. Conclusions: The first wave of the Covid-19 pandemic brought many challenges and stressors for home palliative care professionals. On the other side, they reported a satisfaction with their critical role in carrying out their work with patients at risk. (Edited publisher abstract)