NDLI: A painful experience of limited understanding: healthcare professionals’ experiences with palliative care of people with severe dementia in Norwegian nursing homes

Content Provider	Springer Nature : BioMed Central
Author	Midtbust, May Helen Alnes, Rigmor Einang Gjengedal, Eva Lykkeslet, Else
Abstract	Background People dying with dementia have significant healthcare needs, and palliative care, with its focus on comfort and quality of life, should be made available to these patients. The aim of this study was to explore and increase knowledge of healthcare professionals’ experiences with palliative care to people with severe dementia in nursing homes. Methods To describe the phenomenon under investigation, we used a phenomenological research approach grounded in the philosophy of Husserl. Data were collected using in-depth interviews with 20 healthcare professionals from four Norwegian nursing homes. Results The general meaning structure of the healthcare professionals’ experiences with providing palliative care to people with severe dementia is painfulness, due to their limited understanding of patients’ individual modes of expression. The painfulness is illustrated by the following themes: challenges related to “reading” the patients’ suffering, coming up short despite occasional success, handing the patients over to strangers, and disagreeing on the patients’ best interests. The healthcare professionals struggled to understand patients by “reading” their suffering. Occasionally, they succeeded and were able to calm the patients, but they often had the feeling of coming up short in situations related to pain relief and coping with behavioural symptoms, such as aggression and rejection of care. They also found it painful when the weakest patients were moved from the sheltered unit to a somatic long-term unit and were handed over to strangers who did not know the patients’ ways of expression. Although the healthcare professionals emphasized the importance of good collaboration with the patients’ relatives to ensure the best possible palliative care, they frequently found themselves in difficult situations when they disagreed with the family on the patients’ best interests. Conclusions We found healthcare professionals’ experiences of providing palliative care to people with severe dementia to be painful. To be able to understand the patients better, long-term familiarity and knowledge of how to “read” and observe patients with severe dementia are necessary. Openness in cooperation with the patients’ relatives and with the professional team may increase healthcare professionals’ understanding of the patients’ situations and hence improve the quality of care.
Related Links	https://bmcpalliatcare.biomedcentral.com/counter/pdf/10.1186/s12904-018-0282-8.pdf
Ending Page	9
Page Count	9
Starting Page	1
File Format	HTM / HTML
DOI	10.1186/s12904-018-0282-8
Journal	BMC Palliative Care
Issue Number	1
Volume Number	17
Language	English
Publisher	BioMed Central
Publisher Date	2018-02-13
Access Restriction	Open
Subject Keyword	Pain Medicine Quality of Life Research Palliative Medicine Palliative care Dementia Nursing homes Phenomenology Qualitative methods
Content Type	Text
Resource Type	Article
Subject	Medicine
Journal Impact Factor	2.5/2023
5-Year Journal Impact Factor	3.2/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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