Advanced

Information experiences and needs in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension.

Ivarsson, Bodil LU ; Ekmehag, Björn LU and Sjöberg, Trygve LU (2014) In Nursing Research and Practice 2014.
Abstract
Background. Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are fatal, noncurable, but treatable diseases that strongly affect the patients. Objective. To describe patients' experience of information relating to PAH or CTEPH. Methods. A qualitative method using content analysis was applied. Seventeen patients (thirteen women and four men) aged 28-73 years from a regional PAH centre were individually interviewed. Results. Three categories that describe patients' experiences of information emerged: handling of information, struggling with feelings that also affect others, and vulnerability associated with uncertainty. The patients would have welcomed more information to relatives from the... (More)
Background. Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are fatal, noncurable, but treatable diseases that strongly affect the patients. Objective. To describe patients' experience of information relating to PAH or CTEPH. Methods. A qualitative method using content analysis was applied. Seventeen patients (thirteen women and four men) aged 28-73 years from a regional PAH centre were individually interviewed. Results. Three categories that describe patients' experiences of information emerged: handling of information, struggling with feelings that also affect others, and vulnerability associated with uncertainty. The patients would have welcomed more information to relatives from the healthcare professionals. Shortcomings on communicating a prognosis were experienced. The mediated information and knowledge gave the patients insight into physical or psychosocial problems. Mutual exchange of information between patients and healthcare professionals were marred by different experiences of attitudes, behaviour, and ownership. Conclusions. In the future, healthcare organizations must struggle to achieve a holistic healthcare by making it more person-centred, and they must also promote cooperation between PAH centres and local healthcare providers. It is essential to determine the most appropriate and valuable path of information and communication and, thereby, the most cost-effective management of PAH or CTEPH. (Less)
Please use this url to cite or link to this publication:
author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Nursing Research and Practice
volume
2014
publisher
Hindawi Publishing Corporation
external identifiers
  • pmid:25197567
ISSN
2090-1429
DOI
10.1155/2014/704094
language
English
LU publication?
yes
id
91de5c5f-990c-4dd7-8b8d-9e7c178cc49e (old id 4692093)
alternative location
http://www.ncbi.nlm.nih.gov/pubmed/25197567?dopt=Abstract
date added to LUP
2014-10-03 23:56:32
date last changed
2016-09-20 05:21:52
@article{91de5c5f-990c-4dd7-8b8d-9e7c178cc49e,
  abstract     = {Background. Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are fatal, noncurable, but treatable diseases that strongly affect the patients. Objective. To describe patients' experience of information relating to PAH or CTEPH. Methods. A qualitative method using content analysis was applied. Seventeen patients (thirteen women and four men) aged 28-73 years from a regional PAH centre were individually interviewed. Results. Three categories that describe patients' experiences of information emerged: handling of information, struggling with feelings that also affect others, and vulnerability associated with uncertainty. The patients would have welcomed more information to relatives from the healthcare professionals. Shortcomings on communicating a prognosis were experienced. The mediated information and knowledge gave the patients insight into physical or psychosocial problems. Mutual exchange of information between patients and healthcare professionals were marred by different experiences of attitudes, behaviour, and ownership. Conclusions. In the future, healthcare organizations must struggle to achieve a holistic healthcare by making it more person-centred, and they must also promote cooperation between PAH centres and local healthcare providers. It is essential to determine the most appropriate and valuable path of information and communication and, thereby, the most cost-effective management of PAH or CTEPH.},
  articleno    = {704094},
  author       = {Ivarsson, Bodil and Ekmehag, Björn and Sjöberg, Trygve},
  issn         = {2090-1429},
  language     = {eng},
  publisher    = {Hindawi Publishing Corporation},
  series       = {Nursing Research and Practice},
  title        = {Information experiences and needs in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension.},
  url          = {http://dx.doi.org/10.1155/2014/704094},
  volume       = {2014},
  year         = {2014},
}