Search results for ‘Subject term:"palliative care"’ Sort:
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Oxford textbook of palliative social work
- Editors:
- ALTILIO Terry, OTIS-GREEN Shirley, (eds.)
- Publisher:
- Oxford University Press
- Publication year:
- 2011
- Pagination:
- 812p.
- Place of publication:
- New York
This book is an evidence-informed text that addresses the needs of professionals who provide interdisciplinary, culturally sensitive, biopsychosocial-spiritual care for patients and families living with life-threatening illness. Social workers from diverse settings will benefit from its international scope and wealth of patient and family narratives. Unique is its emphasis on the collaborative nature inherent in palliative care. The book brings together an array of international authors who provide clinicians, researchers, policy-makers, and academics with a broad range of content to enrich the guidelines recommended by the National Consensus Project for Quality Palliative Care. The book: provides an array of narratives which give voice to patients and families to illuminate the critical issues common in clinical practice; celebrates the clinician's creative expression of the human experience implicit in palliative and end-of-life care; offers guidance on providing culturally sensitive, biopsychosocial-spiritual care for patients and families living with life-threatening illness; informs and enriches the clinical practice guidelines for quality palliative care recommended by the national consensus project and the corresponding national quality forum preferred practices; and offers views of the joys and challenges of interdisciplinary work; integrates international perspectives.
Stress processes in caring for an end-of-life family member: application of a theoretical model
- Authors:
- BAINBRIDGE Daryl, et al
- Journal article citation:
- Aging and Mental Health, 13(4), July 2009, pp.537-545.
- Publisher:
- Taylor and Francis
This study examined a wide range of theory-driven variables contributing to family caregiver stress. Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index. The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health. This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.
Planning for the end of children's lives – the lifetime framework
- Authors:
- FINLAY F., et al
- Journal article citation:
- Child: Care, Health and Development, 34(4), July 2008, pp.542-544.
- Publisher:
- Wiley
This paper describes the development of 'a best practice framework', following review of a sample of notes of children known to the Lifetime Service, where the child has a non-malignant life limiting condition, to improve child and family engagement in the planning process at the end of life. An audit of clinical case notes was followed by the development of 'a best practice framework' through a Delphi process involving clinical practitioners. The 3 × 3 framework is presented to aid communication with parents and children at this difficult time of decision-making. The new framework has been well received by both parents and practitioners, and its use will be audited in the future.
Palliative care for young people aged 13-24 years
- Author:
- THORNES Rosemary
- Publisher:
- Association for Children with Life-threatening or Terminal Conditions and their Families
- Publication year:
- 2001
- Pagination:
- 69p., bibliog.
- Place of publication:
- Bristol
This consensus document aims to consider evidence on the care of adolescents and young adults requiring palliative care was published jointly by Association for Children with Life-threatening or Terminal Conditions and their Families, the National Council for Hospice and Specialist Palliative Care Services, and the Scottish Partnership Agency for Palliative Care in September 2001.
Voices for change: current perceptions of services for children with palliative care needs and their families
- Authors:
- HUNT Anne, ELSTON Stella, GALLOWAY Jo
- Publisher:
- Association for Children with Life-threatening or Terminal Conditions and their Families
- Publication year:
- 2003
- Pagination:
- 24p., bibliog.
- Place of publication:
- Bristol
The aim of this study was therefore to explore current perceptions of the accessibility and delivery of relevant services to families of children with life-threatening conditions and, in view of the fact that local services were increasingly becoming the responsibility of Primary Care Trusts, to gather information on the extent to which GPs were currently involved with these families. The intention was to provide a detailed and reliable evidence base that related to the current health system so that a case could be made for improvements to the organisation of children’s specialist services.
End of life and palliative care: thinking about the words we use
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2014
- Pagination:
- 4 minutes 47 seconds
- Place of publication:
- London
A film using animation and vox pops to make the case for practitioners to communicate with a person who is dying clearly and compassionately. It stresses the importance of practitioners to show how much they care about the person who is dying; as well as being clear about what they're doing to help and support the person and their friends and relatives. Practitioners need to ask themselves whether the words they are using convey this compassion, and also check with those they are caring for, that the information they are providing is clear as well as compassionate. The film will be useful for care staff, social workers, care managers, carers, community nurses and nursing staff. (Edited publisher abstract)
Separation characterized by responsibility and guilt: family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities
- Authors:
- MIDTBUST May H., et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(2), 2021, pp.518-533.
- Publisher:
- Sage
Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust. (Edited publisher abstract)
Barriers in the decision making about and performance of continuous sedation until death in nursing homes
- Authors:
- ROBIJN Lenzo, et al
- Journal article citation:
- Gerontologist, 60(5), 2020, pp.916-925.
- Publisher:
- Oxford University Press
Background and Objectives: While decision making about and performance of continuous sedation involve many challenges, they appear to be particularly pervasive in nursing homes. This study aims to identify barriers to the decision making and performance of continuous sedation until death in Flemish nursing homes as experienced by the health care professionals involved. Research Design and Methods: Ten focus groups were held with 71 health care professionals including 16 palliative care physicians, 42 general practitioners, and 13 nursing home staff. Discussions were transcribed verbatim and analyzed using a constant comparative approach.Results: Perceived barriers concerned factors prior to and during sedation and were classified according to three types: (a) personal barriers related to knowledge and skills including the lack of clarity on what continuous sedation should be used for (linguistic ambiguity) and when and how it should be used (practical ambiguity); (b) relational barriers concerning communication and collaboration both between health care professionals and with family; (c) organizational barriers related to the organization of care in nursing homes where, for example, there is no on-site physician, or where the recommended medication is not always available. Discussion and Implications: The findings suggest there are considerable challenges for sound decision making about and performance of continuous sedation until death in nursing homes. There is a need for multicomponent initiatives that provide guidance in the context of the complexity of a resident’s medical situation, the family, and the specific organization of care, which would have the potential to facilitate and improve the decision-making process and performance of continuous sedation in nursing homes. (Publisher abstract)
Influences on care preferences of older people with advanced illness: a systematic review and thematic synthesis
- Authors:
- ETKIND Simon N., et al
- Journal article citation:
- Journal of the American Geriatrics Society, 66(5), 2018, pp.1031-1039.
- Publisher:
- Blackwells Publishing
OBJECTIVES: To determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research., DESIGN: Systematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken., SETTING: Hospital and community care settings., PARTICIPANTS: Older adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164)., MEASUREMENTS: The QualSys criteria were used to assess study quality., RESULTS: Of 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading-off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences., CONCLUSION: Family is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care. (Edited publisher abstract)
Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: a qualitative study
- Authors:
- DAVIES Nathan, et al
- Journal article citation:
- Palliative Medicine, 31(8), 2017, pp.726-733.
- Publisher:
- Hodder Arnold
Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care. (Publisher abstract)