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Receiving bad news- experiences of family members
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, Department of Geriatric Medicine in Norrköping.ORCID iD: 0000-0002-9606-3238
Linköping University, Department of Biomedicine and Surgery. Linköping University, Faculty of Health Sciences.
Uppsala University, Uppsala, Sweden.
2001 (English)In: Journal of Palliative Care, ISSN 0825-8597, Vol. 17, no 4, p. 241-247Article in journal (Refereed) Published
Abstract [en]

Little is known about how next-of-kin experience receiving bad news. The aim of this study was to explore the experiences of family members when receiving information about ending tumour treatment, with a focus on their role in this context.

METHODS: Semi-structured interviews were performed and analyzed using a qualitative phenomenographic method.

RESULTS: Twenty family members of patients with incurable progressive cancer admitted to hospital-based home care were included in the study. Data showed that family members want to protect, represent, or act on behalf of the patient. Some described themselves as assuming prominent roles: the demander-of-truth role, the secret-keeper role, and the controller role. Others assumed more passive roles: the surrendering role, the considerate listener role, and the excluded outsider role.

CONCLUSION: This study has revealed possible-explanations as to why family members are dissatisfied with information. The results of this study may help doctors in clinical practice recognize the different types of behaviour family members exhibit when receiving bad news.

Place, publisher, year, edition, pages
Montreal, Canada: Centre for Bioethics, 2001. Vol. 17, no 4, p. 241-247
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-13726ISI: 000173319900004OAI: oai:DiVA.org:liu-13726DiVA, id: diva2:21212
Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2017-12-13
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. p. 68
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 727
Keywords
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: 2023-01-24Bibliographically approved

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Friedrichsen, MariaStrang, Peter

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Division of Health, Activity and CareFaculty of Health SciencesDepartment of Geriatric Medicine in NorrköpingDepartment of Biomedicine and Surgery
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