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Communication about the Heart Failure Trajectory in Patients, their Families and Health Care Professionals
Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: There is an increasing awareness in the field of cardiology regarding the need for improved delivery of palliative care in patients with heart failure (HF). Professional guidelines have drawn attention to the importance of discussing the heart failure trajectory with patients and their families. These discussions can include, for example, talking about the prognosis, expectations for the future, and care at the end-of-life. It seems difficult for health care professionals to choose the right time for initiating these discussions. They often avoid these conversations because they are afraid of taking away hope and make the patients and their families anxious.

Aim: The overall aim of this thesis was to improve communication about the heart failure trajectory in patients, their families, and health care professionals.

Design and methods: This thesis includes five studies using different designs and data collection methods. Study I has a cross-sectional design using a questionnaire to collect data to describe heart failure nurses’ perceptions of and practice in discussing prognosis and end-of-life care with heart failure patients. Study II has a descriptive and comparative design, where a survey was performed to describe Swedish and Dutch heart failure nurses’ reasons for discussing or not discussing prognosis and end-of-life care with patients. Study III has an inductive and exploratory design, where HF patients participated in focus groups or individual interviews. Data was collected based on their perceptions of communication about the heart failure prognosis. Study IV was a small-scale ethnographic study describing and evaluating the delivery of a simulation when teaching third-year nursing students about end-of-life care at a Swedish university. Study V used co-design in which patients with HF from primary care, their family members and health care professionals (physicians and nurses) from palliative and HF care were invited to be constructive participants in the design process of a communication intervention. Health care professionals participated in a first feasibility testing of the intervention.

Results: Most Swedish HF nurses had discussed prognosis (96%) and end-of-life care (84%) with a HF patient at some point in clinical practice. The nurses often reported that a physician was to have the main responsibility for such discussions (69%), but that the nurse was also believed to have a role to play (I). Prognosis and end-of-life care were, together with sexual activity, () the three least frequently discussed topics in HF clinics in both Sweden and the Netherlands (II). In conversations with 1,809 Swedish and Dutch HF patients, prognosis was discussed with 38% of the patients and end-of-life care was discussed with 10%. In study III, patients expressed different experiences of and preferences for communication about their HF prognosis. Many patients described that the health care professionals had not provided them with any prognosis information at all. The patients had different understandings of HF as a chronic illness, which had an impact on their preferences for communication about their prognosis (III). The simulation training described in the ethnographic study (IV) was part of an end-of-life care simulation during the last term of the 3- year bachelor degree level nursing education program, where students learn and practice basic palliative care. The students felt that the simulation training was a good opportunity to practice handling end-of- life situations as it gave them a chance to experience this situation and their own feelings and thoughts on death and dying. In study V, an intervention to improve communication about prognosis and end-of-life care in HF care was developed and some areas were feasibility tested. Heart failure patients, their families and health care professionals working in HF care or palliative care participated in the development process. Health care professionals (nurses and physicians) participated in the following feasibility testing of the intervention.

Conclusions: This thesis shows that prognosis and end-of-life care are seldom discussed with HF patients in Swedish and Dutch heart failure care. and that many heart failure nurses have ambiguous attitudes towards discussing these topics with patients and their families (I+II). The patients described that they receive different messages concerning their heart failure, and that they also have different preferences for discussing the heart failure trajectory with health care professionals. The professionals need to understand the impact of heart failure on each patient and adapt the communication to each individual (III). End-of-life care simulation with skilled supervisors shows great promise for health care professionals to learn good communication skills in end-of-life care conversations (IV). A Question Prompt List and a communication course might be useful for improving communication about the heart failure trajectory in patients, their families, and health care professionals

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2018. , p. 90
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1611
Keywords [en]
Heart failure, nurse attitudes, prognosis, end-of-life care, communication, palliative care, end- of- life care education, simulation, undergraduate nursing students, co-design
National Category
Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-145585DOI: 10.3384/diss.diva-145585ISBN: 9789176853566 (print)OAI: oai:DiVA.org:liu-145585DiVA, id: diva2:1190274
Public defence
2018-05-04, K1, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2018-03-14 Created: 2018-03-14 Last updated: 2019-09-30Bibliographically approved
List of papers
1. Communicating prognosis and end-of-life care to heart failure patients: a survey of heart failure nurses' perspectives
Open this publication in new window or tab >>Communicating prognosis and end-of-life care to heart failure patients: a survey of heart failure nurses' perspectives
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2014 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 13, no 2, p. 152-161Article in journal (Refereed) Published
Abstract [en]

BACKGROUND:

Many heart failure (HF) patients have palliative care needs, but communication about prognosis and end-of-life care is lacking. HF nurses can play an important role in such communication, but their views on this have rarely been sought.

AIMS:

This study aims to describe HF nurses' perspectives on, and daily practice regarding, discussing prognosis and end-of-life care with HF patients in outpatient care. It further aims to explore barriers, facilitators and related factors for discussing these issues.

METHODS:

A national survey including nurses from outpatient clinics and primary health care centres was performed. Data was collected using a questionnaire on communication with HF patients about prognosis and end-of-life care.

RESULTS:

In total, 111 (82%) of the HF nurses completed the questionnaire. Most of them reported that physicians should have the main responsibility for discussing prognosis (69%) and end-of-life care (67%). Most nurses felt knowledgeable to have these discussions, but 91% reported a need for further training in at least one of the areas. Barriers for communication about prognosis and end-of-life care included the unpredictable trajectory of HF, patients' comorbidities and the opinion that patients in NYHA class II-III are not in the end-of-life.

CONCLUSION:

Although HF nurses feel competent discussing prognosis and end-of-life care with the HF patient, they are hesitant to have these conversations. This might be partly explained by the fact that they consider the physician to be responsible for such conversations, and by perceived barriers to communication. This implies a need for clinical policy and education for HF nurses to expand their knowledge and awareness of the patients' possible needs for palliative care.

Place, publisher, year, edition, pages
Sage Publications, 2014
Keywords
Heart failure, communication, end-of-life care, nurse attitudes, palliative care, prognosis
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-106263 (URN)10.1177/1474515114521746 (DOI)000428139400001 ()24480779 (PubMedID)2-s2.0-84896797220 (Scopus ID)
Available from: 2014-05-02 Created: 2014-05-02 Last updated: 2019-06-27Bibliographically approved
2. Patient-Nurse Communication about Prognosis and End-of-Life Care
Open this publication in new window or tab >>Patient-Nurse Communication about Prognosis and End-of-Life Care
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2015 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 18, no 10, p. 865-871Article in journal (Refereed) Published
Abstract [en]

Background: Although several studies advise that discussions about prognosis and end-of-life care should be held throughout the whole heart failure (HF) trajectory, data is lacking on the prevalence and practice of such discussions in HF care. Objective: The study objective was to explore how often and why HF nurses in outpatient clinics discuss prognosis and end-of-life care in the context of patient education. Methods: This was a descriptive and comparative study. Participants were HF nurses from Swedish and Dutch HF outpatient clinics. Measurements were taken via a survey for both quantitative and qualitative data. Additional data was collected via open-ended questions and analyzed with content analysis. Results: Two hundred seventy-nine nurses registered 1809 patient conversations using a checklist. Prognosis and end-of-life care were among the least frequently discussed topics, whereas symptoms of HF was discussed most often. Prognosis was discussed with 687 patients (38%), and end-of-life care was discussed with 179 patients (10%). Prognosis and end-of-life care were discussed more frequently in The Netherlands than in Sweden (41% versus 34%, pless than0.001, 13% versus 4%, pless than0.001). The nurses did not always recognize prognosis and end-of-life care discussions as a part of their professional role. Conclusions: Currently, patient-nurse communication about prognosis and end-of-life care does not seem to be routine in patient education in HF clinics, and these discussions could be included more often. The reasons for nurses to discuss these topics were related to clinical routines, the patients situation, and professional responsibilities. To improve future care, communication with patients needs to be further developed.

Place, publisher, year, edition, pages
MARY ANN LIEBERT, INC, 2015
National Category
Sociology Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-122208 (URN)10.1089/jpm.2015.0037 (DOI)000362268900013 ()26068058 (PubMedID)
Note

Funding Agencies|Heart and Lung Foundation; King Gustaf V and Queen Victorias Foundation of the Freemasons

Available from: 2015-10-26 Created: 2015-10-23 Last updated: 2019-06-27
3. Simulation to Teach Nursing Students About End-of-Life Care
Open this publication in new window or tab >>Simulation to Teach Nursing Students About End-of-Life Care
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2016 (English)In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 18, no 6, p. 512-518Article in journal (Refereed) Published
Abstract [en]

There is minimal education on death and dying in undergraduate nursing programs, leaving the students unprepared to provide sufficient care to dying patients and their families. This article describes a teaching innovation on how end-of-life care simulation can provide a successful and appreciated learning situation for nursing students, teaching them communication skills in challenging situations. Modifications in the setup of the simulation might help the students to focus more on communication and existential issues instead of mostly practical ones.

Place, publisher, year, edition, pages
Lippincott Williams & Wilkins, 2016
Keywords
end of life care education, simulation, undergraduate nursing students
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-133105 (URN)10.1097/NJH.0000000000000279 (DOI)000387682700005 ()
Available from: 2016-12-12 Created: 2016-12-09 Last updated: 2019-06-27Bibliographically approved

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