Family's Difficulty Scale in End-of-Life Home Care: A New Measure of the Family's Difficulties in Caring for Patients with Cancer at the End of Life at Home from Bereaved Family's Perspective

2012 ◽  
Vol 15 (2) ◽  
pp. 210-215 ◽  
Author(s):  
Yoko Ishii ◽  
Mitsunori Miyashita ◽  
Kazuki Sato ◽  
Taketoshi Ozawa
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Patients With Cancer ◽  
Difficulty Scale ◽  
At Home

scholarly journals “When I Said I Wanted to Die at Home I Didn’t Mean a Nursing Home”: Care Trajectories at the End of Life

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Margaret Penning ◽  
Denise S Cloutier ◽  
Kim Nuernberger ◽  
Deanne Taylor
Keyword(s):  
Nursing Home ◽  
Home Care ◽  
End Of Life ◽  
Nursing Home Care ◽  
At Home

scholarly journals Strategies for caring for the peaceful death of cancer patients at home in Japan – A meta-synthesis of the literature

2018 ◽  
Vol 6 (4) ◽  
pp. 23
Author(s):  
Rieko Kondo ◽  
Makiko Kondo
Keyword(s):  
Home Care ◽  
Medical Staff ◽  
Research Question ◽  
Research Subjects ◽  
Patients With Cancer ◽  
Dying Patients ◽  
Five Factors ◽  
Research Questions ◽  
Dying Patient ◽  
At Home

This study aimed to identify strategies that enable the provision of high quality home care for dying patients with cancer. We searched the NPO Japan Medical Abstracts Society database through Ichushi-Web and selected literature that focused on home care for dying patients with cancer of Japanese origin. In particular, we chose research papers published between 2005 and 2015 that used the qualitative research methodology. The research subjects comprised patients (excluding children), family members of patients, and medical staff who were primary caregivers. We identified the following four research questions by reviewing 13 articles: “A. What enables patients to live at home until they die?”, “B. What difficulties does a dying patient encounter while living at home until death?”, “C. What represents effective support for patients living at home until they die?”, and “D. What represents ineffective support for patients who live at home until they die?”. All results were grouped depending on their relevance to these research questions. We identified 4 categories each pertaining to Research Question A (RQ-A) and RQ-D, and 3 each pertaining to RQ-B and RQ-C. We identified the following five factors that can promote the peaceful death of patients with cancer at home: 1) strong family bonds; 2) caring for the dying patient by the family, according to a framework provided by the medical staff; 3) a guaranteed unconstrained daily life; 4) support for the family’s range of emotions; and 5) systematic support from visiting medical staff and the hospital.

scholarly journals Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care

2005 ◽  
Vol 22 (6) ◽  
pp. 644-646 ◽  
Author(s):  
Freya Tyrer ◽  
Catherine Exley
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Care At Home ◽  
Hospice At Home ◽  
At Home

scholarly journals How to support working family carers? British initiatives as a practical means to reduce loneliness in everyday life of family caregivers in Poland

Family Forum ◽  
2022 ◽  
Vol 11 ◽  
pp. 129-149
Author(s):  
Anna Maria Janowicz ◽  
Martyna Klimek ◽  
Piotr Krakowiak
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Full Time ◽  
Life Care ◽  
Family Carers ◽  
Difficult Situation ◽  
Educational Challenge ◽  
At Home

Among various publications regarding end-of-life care in Poland there is one piece of important research that shows a difficult situation for family caregivers in end-of-life care in Poland, who often lack recognition and support and face a lonely struggle, especially in home care settings (Janowicz, 2019a). The Polish Government published documents in support of family caregivers for the first time in 2019, recognizing respite care and allocating money to some of them. Poland has successfully implemented British standards of hospice and palliative care, making it the best in Central-Eastern Europe; the same could be done in supporting carers in family settings (Krakowiak, 2020a). We have already learnt and benefited from the experience of the British organisation Carers UK, who have been operating successfully for more than 50 years and working towards inclusion of formal and informal care (Klimek, 2020). But how can we move forward in helping those who face loneliness and feelings of helplessness as family carers? We can learn from those who have already developed tools and created strategies supporting family caregivers. Exploring the educational strategies of supporting organizations from the UK, will help to point towards possible solutions to this social and educational challenge in Poland, helping to reduce the loneliness of carers in the home care settings. Most families still feel isolated, while most of our local communities do not support those who care, often for many months and years. Social educators and social workers need to tackle the questions of loneliness and isolation that many family caregivers face. First steps have been made and first publications issued, but more robust strategies and practical solutions are needed. Newest facts and figures from Carers UK documents and Best Practice In Supporting Carers by Carer Positive Employer in Scotland (2020) will help to show existing strategies used for and by employers. Among many existing initiatives this one regarding combining care and work could be very important to recognise the needs of working carers, sharing their job with the duty of constant care at home. Action is urgently needed in Poland, where many people do a full-time job alongside caring at home. Recognition of family carers’ needs by their workplace, support from employers and flexibility in working hours is still a rare exception, and it should be changed. The Covid-19 pandemic has fully exposed the problems of carers of dependent people around the world and also in Poland, especially difficult for those who combine care with work.

scholarly journals Impact on place of death in cancer patients: a causal exploration in southern Switzerland

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Heidi Kern ◽  
Giorgio Corani ◽  
David Huber ◽  
Nicola Vermes ◽  
Marco Zaffalon ◽  
...  
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Expert Knowledge ◽  
Place Of Death ◽  
Data Mining Algorithm ◽  
Open Communication ◽  
Data Set ◽  
Palliative Home Care ◽  
At Home

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.

scholarly journals Home care and end-of-life hospital admissions: a retrospective interview study in English primary and secondary care

2019 ◽  
Vol 69 (685) ◽  
pp. e561-e569 ◽  
Author(s):  
Sarah Hoare ◽  
Michael P Kelly ◽  
Stephen Barclay
Keyword(s):  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospital Admissions ◽  
Care Delivery ◽  
Care Provision ◽  
Life Care ◽  
Healthcare Staff ◽  
Next Of Kin ◽  
At Home

BackgroundEnabling death at home remains an important priority in end-of-life care policy. However, hospital continues to be a more prevalent place of death than home in the UK, with admissions at the end-of-life often negatively labelled. Admissions are frequently attributed to an unsuitable home environment, associated with inadequate family care provision and insufficient professional care delivery.AimTo understand problems in professional and lay care provision that discourage death at home and lead to hospital admissions at the end of life.Design and settingA qualitative study of admission to a large English hospital of patients close to the end of their life.MethodRetrospective in-depth semi-structured interviews with healthcare professionals (n = 30) and next-of-kin (n = 3) involved in an admission. Interviews addressed why older patients (>65 years) close to the end of life are admitted to hospital. Interviews were transcribed and analysed thematically.ResultsHome-based end-of-life care appeared precarious. Hospital admission was considered by healthcare staff when there was insufficient nursing provision, or where family support, which was often extensive but under supported, was challenged. In these circumstances, home was not recognised to be a suitable place of care or death, justifying seeking care provision elsewhere.ConclusionChallenges in home care provision led to hospital admissions. Home end-of-life care depended on substantial input from family and professional carers, both of which were under-resourced. Where either care was insufficient to meet the needs of patients, home was no longer deemed to be desirable by healthcare staff and hospital care was sought.

scholarly journals End-of-Life Care and Circumstances of Death in Patients Dying As a Result of Cancer in Belgium and the Netherlands: A Retrospective Comparative Study

2011 ◽  
Vol 29 (32) ◽  
pp. 4327-4334 ◽  
Author(s):  
Koen Meeussen ◽  
Lieve Van den Block ◽  
Michael A. Echteld ◽  
Nicole Boffin ◽  
Johan Bilsen ◽  
...  
Keyword(s):  
The Netherlands ◽  
End Of Life ◽  
End Of Life Care ◽  
Treatment Preferences ◽  
Life Care ◽  
Patients With Cancer ◽  
Life Issues ◽  
End Of Life Issues ◽  
Retrospective Comparative Study ◽  
At Home

Purpose To examine and compare end-of-life care in patients with cancer dying in Belgium and the Netherlands. Patients and Methods A mortality follow-back study was undertaken in 2008 via representative nationwide sentinel networks of general practitioners (GPs) in Belgium and the Netherlands. By using similar standardized procedures, GPs reported on aspects of end-of-life care and the circumstances of nonsudden death of patients with cancer in their practice. Results Of the 422 reported patients with cancer, most resided at home during the last year of life (Belgium, 91%; the Netherlands, 95%). Death occurred at home in 34% (Belgium) and 61% (the Netherlands) and in the hospital in 29% (Belgium) and 19% (the Netherlands). In the last month of life, end-of-life issues were more often discussed in the Netherlands (88%) than in Belgium (68%). In both countries, physical problems were discussed most often (Belgium, 49%; the Netherlands, 78%) and spiritual issues least often (Belgium, 20%; the Netherlands, 32%). Certain end-of-life treatment preferences were known for 43% (Belgium) and 67% (the Netherlands) of patients. In the last week of life, treatment was most often focused on palliation (Belgium, 94%; the Netherlands, 91%). Physical distress was reported in 84% (Belgium) and 76% (the Netherlands) of patients and psychological distress in 59% and 36%. Most distressing was lack of energy (Belgium, 73%; the Netherlands, 71%) and lack of appetite (Belgium, 61%; the Netherlands, 53%). Two thirds of patients were bedridden (Belgium, 67%; the Netherlands, 69%). Conclusion Although place of death and communication about end-of-life issues differ substantially, a palliative treatment goal is adopted for the vast majority of patients in both countries. However, GPs reported that the majority of patients experienced symptom distress at the end of life, which suggests important challenges remain for improving end-of-life care.

Trajectory of psychosocial symptoms among home care patients with cancer at end‐of‐life

2020 ◽  
Author(s):  
Hsien Seow ◽  
Tara Stevens ◽  
Lisa C. Barbera ◽  
Fred Burge ◽  
Kimberlyn McGrail ◽  
...  
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Patients With Cancer
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