TY - JOUR
T1 - Stakeholders in support systems for self-care for chronic illness
T2 - the gap between expectations and reality regarding their identity, roles and relationships
AU - Pumar-Méndez, María J.
AU - Mujika, Agurtzane
AU - Regaira, Elena
AU - Vassilev, Ivaylo
AU - Portillo, Mari Carmen
AU - Foss, Christina
AU - Todorova, Elka
AU - Roukova, Poli
AU - Ruud Knutsen, Ingrid A.
AU - Serrano, Manuel
AU - Lionis, Christos
AU - Wensing, Michel
AU - Rogers, Anne
PY - 2017/6/1
Y1 - 2017/6/1
N2 - Background and objective: The spread of self-care holds the promise of containing chronic illness burden. Falling within the framework of a FP7 collaborative research project, this paper reports the views of key informants from six countries regarding who the main stakeholders are at different levels in the support system for self-care for patients with chronic illness (SSSC) and how they accomplish their role and collaborate. Methods: 90 Interviews with purposefully selected key informants from Bulgaria, Greece, the Netherlands, Norway, Spain and United Kingdom were conducted. Interviews involved government and local authorities, politicians, academics, health professionals and private sector representatives. Interviewers followed an expert opinion-based guide. Analysis involved a cross-country examination with thematic analysis and framework method techniques. Results: Key informants described the ideal SSSC as inclusive, interdependent and patient-centred. The following main stakeholders in SSSC were identified: patients, governments, health-care professionals, associations, private companies and the media. In the current SSSCs, collaboration among stakeholders within and across different levels was said to be lacking. Patients were seen as playing a passive subordinate role based on the following: their own attitudes; the paternalistic and medicalized attitudes of the health-care professionals; their misrepresentation by patient associations; and their exposure to the damaging influences of media and industries. Conclusions: Making SSSC patient-centred constitutes the greatest challenge for European authorities. Strategies must be revised for promoting patient participation. They should undergo changes so as to promote industry and media social responsibility and patient association advocacy capacity.
AB - Background and objective: The spread of self-care holds the promise of containing chronic illness burden. Falling within the framework of a FP7 collaborative research project, this paper reports the views of key informants from six countries regarding who the main stakeholders are at different levels in the support system for self-care for patients with chronic illness (SSSC) and how they accomplish their role and collaborate. Methods: 90 Interviews with purposefully selected key informants from Bulgaria, Greece, the Netherlands, Norway, Spain and United Kingdom were conducted. Interviews involved government and local authorities, politicians, academics, health professionals and private sector representatives. Interviewers followed an expert opinion-based guide. Analysis involved a cross-country examination with thematic analysis and framework method techniques. Results: Key informants described the ideal SSSC as inclusive, interdependent and patient-centred. The following main stakeholders in SSSC were identified: patients, governments, health-care professionals, associations, private companies and the media. In the current SSSCs, collaboration among stakeholders within and across different levels was said to be lacking. Patients were seen as playing a passive subordinate role based on the following: their own attitudes; the paternalistic and medicalized attitudes of the health-care professionals; their misrepresentation by patient associations; and their exposure to the damaging influences of media and industries. Conclusions: Making SSSC patient-centred constitutes the greatest challenge for European authorities. Strategies must be revised for promoting patient participation. They should undergo changes so as to promote industry and media social responsibility and patient association advocacy capacity.
KW - chronic illness
KW - cross-national research
KW - patient-centred care
KW - self-care
KW - self-management support
KW - stakeholders
UR - http://www.scopus.com/inward/record.url?scp=84971298301&partnerID=8YFLogxK
U2 - 10.1111/hex.12471
DO - 10.1111/hex.12471
M3 - Article
C2 - 27231025
AN - SCOPUS:84971298301
SN - 1369-6513
VL - 20
SP - 434
EP - 447
JO - Health Expectations
JF - Health Expectations
IS - 3
ER -