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Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.ORCID iD: 0000-0002-9606-3238
Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala University, Uppsala, Sweden.
2000 (English)In: Acta Oncologica, ISSN 0001-6381, Vol. 39, no 8, 919-925 p.Article in journal (Refereed) Published
Abstract [en]

The focus of most studies on informational needs has been on primary cancer diagnosis. The aim of this study was to explore how cancer patients in a palliative care setting perceived their own participation and resources after receiving information about the discontinuation of active tumour treatment. Thirty cancer patients admitted to a hospital-based home-care unit participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. The patients described their own participation as being either verbally passive or active, in order to receive more information or to avoid information. Furthermore, previous knowledge, at different levels, was described as important: 1) Unsuspecting naive, 2) apprehensive suspicious, 3) well prepared. Patients' own resources included a sense of wellbeing, a sense of security and individual strength. In conclusion, patients' previous knowledge and own resources are important components for their capacity to take part in the dialogue when receiving information.

Place, publisher, year, edition, pages
2000. Vol. 39, no 8, 919-925 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-13724DOI: 10.1080/02841860050215882OAI: oai:DiVA.org:liu-13724DiVA: diva2:21210
Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10
In thesis
1. Crossing the border: Different ways cancer patients, family members and physicians experience information in the transition to the late palliative phase
Open this publication in new window or tab >>Crossing the border: Different ways cancer patients, family members and physicians experience information in the transition to the late palliative phase
2002 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Information in the transition to the late palliative phase is not a well-studied area, especially not from the perspective of patients and family members. The aim of this thesis was to describe how cancer patients, family members and physicians experience information during the transition from a curative or early palliative phase to a late palliative phase, i.e. when tumour-specific treatment could not be offered. Cancer patients (n=30) admitted to palliative hospital based home care, family members (n=20) of cancer patients, and physicians (n=30) working with cancer patients in different settings were included in order to create a maximum variation sampling.

Tape-recorded, semi-structured interviews and qualitative, phenomenographic analyses were done in all the studies.

Patients described the physician as an expert (study I), an important person during this event, despite characterising him/her in different ways ranging from the empathetic professional to the rough and ready expert. Their relationship with the physician was also stressed. Their own resources, i.e. a sense of well being, a sense of security and individual strength, and their previous knowledge, were important components regarding their ability to take part in the communication (study II). Patients interpret words and phrases carefully and can perceive them as forewarnings, as being emotionally trying, and as fortifying and strengthening (study III). The overall message could be interpreted as either focused on quality if life, on treatment or on death and threat.

Family members wanted to protect the patient during this period and could be very active and prominent in their protective role (study IV). However, other family members described themselves as being in the background more or less involuntarily. Family members also felt that there were expectations regarding their behaviour, either that they should take over in terms of communication, or that they should restrict their participation. When giving information, the physicians had a clear goal - to make the patient understand while being as considerate toward the patient as possible. However, the strategies for reaching this goal differed and included: explaining and convincing, softening the impact and vaguely suggesting, preparing and adapting. Some physicians had a main strategy while others mixed different strategies depending on the context.

The experience of receiving and providing information about discontinuing tumour specific treatment is like crossing a border, where patients experience the behaviour of the physician and the words they express of great significance. Family members assume the role of protectors. Physicians use different strategies in order to help patients cross the border.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2002. 68 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 727
Keyword
communication, information, patient-physician relationship, family, prognosis, palliative care, cancer
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-5231 (URN)91-7373-166-8 (ISBN)
Public defence
2002-04-26, Fornborgen, Vrinnevisjukhuset, Norrköping, 09:00 (English)
Opponent
Supervisors
Note
On the day of the public defence the status of the article II was: In press and the title was: Patient interpretation of verbal expressions when given information about ending cancer treatment.; the status of article V was: Submitted.Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10Bibliographically approved

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Friedrichsen, MariaStrang, Peter

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