“I was told that I would not die from heart failure”: Patient perceptions of prognosis communication

Hjelmfors, Lisa; Sandgren, Anna; Strömberg, Anna; Mårtensson, Jan; Jaarsma, Tiny; Friedrichsen, Maria

doi:10.1016/j.apnr.2018.03.007

Cited by 20 publications

(17 citation statements)

References 31 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…However, this should not hinder nurses and physicians from communicating with relatives in a general way about treatment and care, their own situation and their support needs. For instance, both patients [74] and relatives [75] have reported that they prefer information about the expected course of the illness. However, healthcare professionals may feel uncomfortable about discussing end-of-life issues with patients and relatives because of feeling unprepared as well as worry about destroying hope [74,76].…”

Section: Discussionmentioning

confidence: 99%

“…For instance, both patients [74] and relatives [75] have reported that they prefer information about the expected course of the illness. However, healthcare professionals may feel uncomfortable about discussing end-of-life issues with patients and relatives because of feeling unprepared as well as worry about destroying hope [74,76]. Nevertheless, in order to meet relatives' information needs, healthcare professionals should investigate what they can tell them about the patient's situation and what patients and relatives want to know.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

Hov

Bjørsland

Kjøs³

et al. 2020

BMC Palliat Care

View full text Add to dashboard Cite

Background: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important. Aim: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. Methods: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/ cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test. Results: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. Conclusions: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

Hov

Bjørsland

Kjøs³

et al. 2020

BMC Palliat Care

View full text Add to dashboard Cite

show abstract

“…A QPL needs to be used with care as patients have different approaches to cope with HF and also want different amounts of information depending on their current situation [ 7 ]. Some patients may only want to face part of the reality as a way of maintaining hope [ 34 ].…”

Section: Discussionmentioning

confidence: 99%

“…At the same time, the amount of information about the HF trajectory wanted by the patient and the family member varies. Therefore, it is important for health care professionals to tailor their information according to the needs and preferences of each individual patient and family member [ 7 , 8 ].…”

Section: Introductionmentioning

confidence: 99%

Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals

et al. 2020

Self Cite

View full text Add to dashboard Cite

Background The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. Methods Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. Results A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. Conclusions This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients’ and family members’ preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.

show abstract

“…In a nationwide survey in Sweden, we found that communication about prognosis and end‐of‐life care does not seem to be routine in heart failure care and these discussions could be included more often . In interviews with patients with heart failure we also found that most patients want the health care professionals to be honest about the future and help the patient to be prepared for a time when heart failure is deteriorating …”

mentioning

confidence: 95%

Talking about palliative care in heart failure

Jaarsma

Wal

Hjelmfors

et al. 2018

European J of Heart Fail

Self Cite

View full text Add to dashboard Cite

“I was told that I would not die from heart failure”: Patient perceptions of prognosis communication

Abstract: This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.

Cited by 20 publications

References 31 publications

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals

Talking about palliative care in heart failure

Contact Info

Product

Resources

About