NDLI: Living with moderate to severe renal failure from the perspective of patients

Content Provider	Springer Nature : BioMed Central
Author	Schipper, K. van der Borg, W. E. de Jong-Camerik, J. Abma, T. A.
Abstract	Background Within healthcare, almost no attention is given to patients with moderate-to- severe chronic kidney disease, having a with GFR between 20 and 45 while the presumption exists that these patients already experience several problems in their lives during the course of their illness. Methods A team of academic researchers and a renal patient participated in a qualitative study. Individual interviews (n = 31) and focus groups (10 participants in total) with patients having moderate-to-severe chronic kidney disease were conducted to gain insight into their everyday problems. Results Participants mentioned several experiences that can be divided into physical, social, societal and psychological aspects as well as aspects related to healthcare. The most important findings, following under each of these categories are: 1) the experience of fatigue (physical aspects) 2) the search for acknowledgment of complaints/not enough attention given to complaints leading to overcompensation and secrecy (societal aspects) 3) work problems (societal aspects) and 4) the wish to control the disease but not receiving enough support for this (healthcare). Patients feel in general that healthcare professionals do not take them seriously in their complaints and problems. Conclusions This study offers important new insights into an expanding group of patients having moderate-to-severe chronic kidney disease. Healthcare professionals should acknowledge their problems instead of ignoring or rejecting them and they should support patients in finding a way to deal with them. The assumptions of Personalised Care Planning could be used to support patients.
Related Links	https://bmcnephrol.biomedcentral.com/counter/pdf/10.1186/s12882-016-0263-1.pdf
Ending Page	13
Page Count	13
Starting Page	1
File Format	HTM / HTML
ISSN	14712369
DOI	10.1186/s12882-016-0263-1
Journal	BMC Nephrology
Issue Number	1
Volume Number	17
Language	English
Publisher	BioMed Central
Publisher Date	2016-05-16
Access Restriction	Open
Subject Keyword	Nephrology Internal Medicine Chronic Kidney Disease GFR Moderate Patient perspectives Quality of life Severe
Content Type	Text
Resource Type	Article
Subject	Nephrology
Journal Impact Factor	2.2/2023
5-Year Journal Impact Factor	2.6/2023

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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