liu.seSearch for publications in DiVA
Endre søk
RefereraExporteraLink to record
Permanent link

Direct link
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Annet format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annet språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf
Crossing the border: Different ways cancer patients, family members and physicians experience information in the transition to the late palliative phase
Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Hälsa, Aktivitet, Vård (HAV). Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Närsjukvården i östra Östergötland, LAH/Linnéa-enheten.ORCID-id: 0000-0002-9606-3238
2002 (engelsk)Doktoravhandling, med artikler (Annet vitenskapelig)
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.

sted, utgiver, år, opplag, sider
Linköping: Linköping University Electronic Press, 2002. , s. 68
Serie
Linköping University Medical Dissertations, ISSN 0345-0082 ; 727
Emneord [en]
communication, information, patient-physician relationship, family, prognosis, palliative care, cancer
HSV kategori
Identifikatorer
URN: urn:nbn:se:liu:diva-5231ISBN: 91-7373-166-8 (tryckt)OAI: oai:DiVA.org:liu-5231DiVA, id: diva2:21214
Disputas
2002-04-26, Fornborgen, Vrinnevisjukhuset, Norrköping, 09:00 (engelsk)
Opponent
Veileder
Merknad
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.Tilgjengelig fra: 2002-05-24 Laget: 2002-05-24 Sist oppdatert: 2015-06-10bibliografisk kontrollert
Delarbeid
1. Breaking bad news in the transition from curative to palliative cancer care-patient's view of the doctor giving the information
Åpne denne publikasjonen i ny fane eller vindu >>Breaking bad news in the transition from curative to palliative cancer care-patient's view of the doctor giving the information
2000 (engelsk)Inngår i: Supportive Care in Cancer, ISSN 0941-4355, Vol. 8, nr 6, s. 472-478Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

In the transition from curative to palliative cancer care, communication is of special importance. The aim of this study was to explore how patients with a disseminated cancer disease experienced the information about their incurable state, focusing on the physician. The persons taking part were 30 patients admitted to a hospital-based home care unit in Sweden. Semi-structured interviews were conducted and analysed using a qualitative method. All patients described their doctors as experts, despite different qualities. Six subcategories were identified: (1) the inexperienced messenger, (2) the emotionally burdened, (3) the rough and ready expert (4) the benevolent but tactless expert, (5) the "distanced" doctor and (6), the empathic professional. The relationship was described as very important to the patients' capacity to handle the information and was felt to have been built up during earlier meetings. The relationship was described in four subcategories: personal between well-acquainted individuals, impersonal between unacquainted individuals, personal between unacquainted individuals and impersonal between well-acquainted individuals. Both the character of the physician and his or her ability to create personal relationships influence patients' capacity to cope with this specific situation. Education and guidance are needed both in clinical practice and in medical schools.

Emneord
Doctor - patient communication, Palliative care, Behaviour, Patient's opinion
HSV kategori
Identifikatorer
urn:nbn:se:liu:diva-13723 (URN)10.1007/s005200000147 (DOI)
Tilgjengelig fra: 2002-05-24 Laget: 2002-05-24 Sist oppdatert: 2015-06-10
2. Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
Åpne denne publikasjonen i ny fane eller vindu >>Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
2000 (engelsk)Inngår i: Acta Oncologica, ISSN 0001-6381, Vol. 39, nr 8, s. 919-925Artikkel i tidsskrift (Fagfellevurdert) 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.

HSV kategori
Identifikatorer
urn:nbn:se:liu:diva-13724 (URN)10.1080/02841860050215882 (DOI)
Tilgjengelig fra: 2002-05-24 Laget: 2002-05-24 Sist oppdatert: 2015-06-10
3. Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
Åpne denne publikasjonen i ny fane eller vindu >>Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
2002 (engelsk)Inngår i: Palliative Medicine, ISSN 0269-2163, Vol. 16, nr 4, s. 323-330Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

BACKGROUND: Cancer patients' interpretations of the meaning of words used when given bad news are not well studied in medical settings. The aim of this study was to ascertain what significance verbal expressions had for cancer patients when they were given information about ending active tumour treatment, and what message they felt they received.

METHODS: Tape-recorded semi-structured interviews were performed and analysed using a qualitative phenomenographical approach.

RESULTS: Thirty patients with incurable cancer admitted to hospital-based home care unit in Sweden participated. Three main categories about the significance of words emerged: 1) words could indicate indirect warnings as being forewarnings, evasive or ambiguous; 2) words could also be perceived as emotionally trying, as threats or abandoning; 3) other words were fortifying and strengthened the patient in this situation. The overall message given during the information could be interpreted differently: either focused on treatment, on quality of life, or on threat and death.

CONCLUSION: The understanding of the significance of words to tailor the information to patients helps the physician to use forewarnings and fortifying words and to identify and avoid the use of threatening words.

Emneord
communication, neoplasms, palliative care, patient perception, phenomenography
HSV kategori
Identifikatorer
urn:nbn:se:liu:diva-13725 (URN)10.1191/0269216302pm543oa (DOI)
Tilgjengelig fra: 2002-05-24 Laget: 2002-05-24 Sist oppdatert: 2015-06-10
4. Receiving bad news- experiences of family members
Åpne denne publikasjonen i ny fane eller vindu >>Receiving bad news- experiences of family members
2001 (engelsk)Inngår i: Journal of Palliative Care, ISSN 0825-8597, Vol. 17, nr 4, s. 241-247Artikkel i tidsskrift (Fagfellevurdert) 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.

sted, utgiver, år, opplag, sider
Montreal, Canada: Centre for Bioethics, 2001
HSV kategori
Identifikatorer
urn:nbn:se:liu:diva-13726 (URN)000173319900004 ()
Tilgjengelig fra: 2002-05-24 Laget: 2002-05-24 Sist oppdatert: 2017-12-13
5. Doctors' strategies when breaking bad news to terminally ill cancer patients
Åpne denne publikasjonen i ny fane eller vindu >>Doctors' strategies when breaking bad news to terminally ill cancer patients
2003 (engelsk)Inngår i: Journal of Palliative Medicine, ISSN 1096-6218, Vol. 6, nr 4, s. 565-574Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Breaking bad news to patients with a terminal disease is a difficult task for physicians. The aim of this study was to study how doctors perceive their strategies when giving information to cancer patients about discontinuing active tumour treatment. Thirty doctors with different demographic characteristics working with patients with cancer in Sweden participated. Semistructured interviews were conducted and analyzed using a qualitative phenomenographic method. The goal when giving this information was described as making the patient understands while being as considerate as possible. However, the strategies for reaching this goal were different: (1) explaining and convincing information, (i.e., giving a long explanation about why treatment has to be discontinued); (2) softening the impact of the information, with the doctor recommending discontinuation of treatment; (3) and preparing either the patient or the physician himself/herself for the information; (4) adapting or tailoring the information to the patient, with the doctor actively seeking knowledge about the patient in order to be able to adapt the information to the patient's level, or with the doctor briefly describing the situation and then remaining silent, allowing room for the patient's reactions and questions (i.e., letting the patient take an active part). When giving information, the doctors' goal was to make patients understand, but the strategies differed depending on the context.

HSV kategori
Identifikatorer
urn:nbn:se:liu:diva-13727 (URN)10.1089/109662103768253678 (DOI)
Tilgjengelig fra: 2002-05-24 Laget: 2002-05-24 Sist oppdatert: 2015-06-10

Open Access i DiVA

fulltekst(627 kB)1701 nedlastinger
Filinformasjon
Fil FULLTEXT01.pdfFilstørrelse 627 kBChecksum SHA-1
b36f800a0ff79f0f54951751ed76e700bc28c24b07e0f60ae0f83cdbdf3beffc41e95cb2
Type fulltextMimetype application/pdf

Personposter BETA

Friedrichsen, Maria

Søk i DiVA

Av forfatter/redaktør
Friedrichsen, Maria
Av organisasjonen

Søk utenfor DiVA

GoogleGoogle Scholar
Totalt: 1701 nedlastinger
Antall nedlastinger er summen av alle nedlastinger av alle fulltekster. Det kan for eksempel være tidligere versjoner som er ikke lenger tilgjengelige

isbn
urn-nbn

Altmetric

isbn
urn-nbn
Totalt: 1636 treff
RefereraExporteraLink to record
Permanent link

Direct link
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Annet format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annet språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf