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Captured voices in cancer: experiences from networking between individuals with experiential and professional knowledge

Carlsson, Christina LU ; Segesten, Kerstin; Nilbert, Mef LU and Nilsson, Kerstin (2007) In BMC Health Services Research 7.
Abstract
Background: Patients needs and experiences attract increasing attention within health care. In order to generate knowledge about the voices that emerge from collaborative experiences between members of patient associations for cancer patients ( PACP) and health care professionals (HCPs), we studied a permanent network aimed at improving cancer care through increased attention to the cancer patients' view and experiences. Methods: Open-ended interviews were carried out with 16 individuals; 6 PACP members and 10 HCPs, and after transcription the texts were analysed by inductive content analysis. Results: Four voices, which represent various experiences from networking, were identified; the hesitant voice, the enlightened voice, the liberated... (More)
Background: Patients needs and experiences attract increasing attention within health care. In order to generate knowledge about the voices that emerge from collaborative experiences between members of patient associations for cancer patients ( PACP) and health care professionals (HCPs), we studied a permanent network aimed at improving cancer care through increased attention to the cancer patients' view and experiences. Methods: Open-ended interviews were carried out with 16 individuals; 6 PACP members and 10 HCPs, and after transcription the texts were analysed by inductive content analysis. Results: Four voices, which represent various experiences from networking, were identified; the hesitant voice, the enlightened voice, the liberated voice, and the representative voice. The hesitant voice reflects uncertainty experienced when the participants were exposed to different views and opinions within the network. The enlightened voice reflects new points of view and gain of knowledge. The liberated voice signifies trust, balance, and confidence related to individual experiences and responsibilities being viewed in a broader perspective. The representative voice is derived from the transformation of experiences and responsibilities through insight, understanding, and new perspectives. Conclusion: Networking between representatives for PACPs and HCPs may help the participants manage uncertainty, strengthen the patient's perspective and provide new views on common issues. The different voices identified in this study demonstrate that both PACP members and HCPs distanced themselves from their individual experiences in order to be perceived as unselfish and knowledgeable within the network. Although the climate was characterized by trustfulness, the members' unique positions need to be defined in order to obtain an optimal balance between the groups and prevent members' patient experiences of losing their character by learning to much from the HCPs. Increased understanding of the hesitant, the enlightened, the liberated, and the representative voices, and awareness of experiential versus professional knowledge of cancer may facilitate and probably improve future networking efforts. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
BMC Health Services Research
volume
7
publisher
BioMed Central
external identifiers
  • wos:000244658700001
  • scopus:33847627150
ISSN
1472-6963
DOI
10.1186/1472-6963-7-23
language
English
LU publication?
yes
id
a10ff431-f79d-42d2-b9a5-2a6cc3dfa61e (old id 673961)
date added to LUP
2007-12-11 10:35:41
date last changed
2017-01-01 07:02:15
@article{a10ff431-f79d-42d2-b9a5-2a6cc3dfa61e,
  abstract     = {Background: Patients needs and experiences attract increasing attention within health care. In order to generate knowledge about the voices that emerge from collaborative experiences between members of patient associations for cancer patients ( PACP) and health care professionals (HCPs), we studied a permanent network aimed at improving cancer care through increased attention to the cancer patients' view and experiences. Methods: Open-ended interviews were carried out with 16 individuals; 6 PACP members and 10 HCPs, and after transcription the texts were analysed by inductive content analysis. Results: Four voices, which represent various experiences from networking, were identified; the hesitant voice, the enlightened voice, the liberated voice, and the representative voice. The hesitant voice reflects uncertainty experienced when the participants were exposed to different views and opinions within the network. The enlightened voice reflects new points of view and gain of knowledge. The liberated voice signifies trust, balance, and confidence related to individual experiences and responsibilities being viewed in a broader perspective. The representative voice is derived from the transformation of experiences and responsibilities through insight, understanding, and new perspectives. Conclusion: Networking between representatives for PACPs and HCPs may help the participants manage uncertainty, strengthen the patient's perspective and provide new views on common issues. The different voices identified in this study demonstrate that both PACP members and HCPs distanced themselves from their individual experiences in order to be perceived as unselfish and knowledgeable within the network. Although the climate was characterized by trustfulness, the members' unique positions need to be defined in order to obtain an optimal balance between the groups and prevent members' patient experiences of losing their character by learning to much from the HCPs. Increased understanding of the hesitant, the enlightened, the liberated, and the representative voices, and awareness of experiential versus professional knowledge of cancer may facilitate and probably improve future networking efforts.},
  author       = {Carlsson, Christina and Segesten, Kerstin and Nilbert, Mef and Nilsson, Kerstin},
  issn         = {1472-6963},
  language     = {eng},
  publisher    = {BioMed Central},
  series       = {BMC Health Services Research},
  title        = {Captured voices in cancer: experiences from networking between individuals with experiential and professional knowledge},
  url          = {http://dx.doi.org/10.1186/1472-6963-7-23},
  volume       = {7},
  year         = {2007},
}