What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer

Abstract Background In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements...

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Main Authors: M. G. Oosterveld-Vlug, B. Custers, J. Hofstede, G. A. Donker, P. M. Rijken, J. C. Korevaar, A. L. Francke
Format: Article
Language:English
Published: BMC 2019-11-01
Series:BMC Palliative Care
Subjects:
Online Access:http://link.springer.com/article/10.1186/s12904-019-0485-7
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author M. G. Oosterveld-Vlug
B. Custers
J. Hofstede
G. A. Donker
P. M. Rijken
J. C. Korevaar
A. L. Francke
author_facet M. G. Oosterveld-Vlug
B. Custers
J. Hofstede
G. A. Donker
P. M. Rijken
J. C. Korevaar
A. L. Francke
author_sort M. G. Oosterveld-Vlug
collection DOAJ
description Abstract Background In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive. Methods Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis. Results Patients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of ‘proper information transfer between professionals’ and ‘clear and rapid procedures’ were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this. Conclusions Medical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.
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spelling doaj.art-eb653dbf9c274f40908f11a9c3f0a2442022-12-21T17:58:45ZengBMCBMC Palliative Care1472-684X2019-11-0118111010.1186/s12904-019-0485-7What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancerM. G. Oosterveld-Vlug0B. Custers1J. Hofstede2G. A. Donker3P. M. Rijken4J. C. Korevaar5A. L. Francke6Nivel, Netherlands institute for health services researchNivel, Netherlands institute for health services researchNivel, Netherlands institute for health services researchNivel, Netherlands institute for health services researchNivel, Netherlands institute for health services researchNivel, Netherlands institute for health services researchNivel, Netherlands institute for health services researchAbstract Background In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive. Methods Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis. Results Patients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of ‘proper information transfer between professionals’ and ‘clear and rapid procedures’ were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this. Conclusions Medical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.http://link.springer.com/article/10.1186/s12904-019-0485-7Palliative carePrimary health careHome-care servicesCancerQuality of care
spellingShingle M. G. Oosterveld-Vlug
B. Custers
J. Hofstede
G. A. Donker
P. M. Rijken
J. C. Korevaar
A. L. Francke
What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer
BMC Palliative Care
Palliative care
Primary health care
Home-care services
Cancer
Quality of care
title What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer
title_full What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer
title_fullStr What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer
title_full_unstemmed What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer
title_short What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer
title_sort what are essential elements of high quality palliative care at home an interview study among patients and relatives faced with advanced cancer
topic Palliative care
Primary health care
Home-care services
Cancer
Quality of care
url http://link.springer.com/article/10.1186/s12904-019-0485-7
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