| 1. |
- Eklund, Rakel, 1986-, et al.
(författare)
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Surviving COVID-19 : patients' experiences of care and path to recovery
- 2024
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To examine patients' experiences of receiving care on an ICU for COVID-19 and the subsequent rehabilitation process.Methods: An explorative and inductive design was used. Participants were recruited from two university hospitals in Sweden. Patients admitted to the ICU due to COVID-19 from March 2020 to April 2021, who enrolled in the ICU follow-up, and understood and spoke Swedish were invited to participate. In total, 20 participants completed a semi-structured interview, of whom 18 were included in the thematic analysis.Results: The analysis resulted in two themes: "An isolated world with silver linings" and "Recovery in the wake of the pandemic". Findings show that patients cared for on an ICU for COVID-19 during the pandemic felt safe but experienced a sense of vulnerability. After discharge, physical rehabilitation was a slow process with frustrating day-to-day fluctuations. Mentally, participants felt isolated, fatigued, and emotionally sensitive. Patients reported that love and support from family and friends were crucial for the recovery process.Conclusions: This study highlights the challenges of recovering from COVID-19, emphasizing the importance of continued support from health care, public services, family and friends. It provides important insights into patients' experiences and can inform future healthcare strategies and policies.
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| 2. |
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| 3. |
- Hjelmfors, Lisa, et al.
(författare)
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Communicating prognosis and end-of-life care to heart failure patients : a survey of heart failure nurses' perspectives
- 2014
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 13:2, s. 152-161
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Hjelmfors, Lisa, et al.
(författare)
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Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:8
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Tidskriftsartikel (refereegranskat)abstract
- Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals' perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.
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| 5. |
- Hjelmfors, Lisa, 1984-
(författare)
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Communication about the Heart Failure Trajectory in Patients, their Families and Health Care Professionals
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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
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| 6. |
- Hjelmfors, Lisa, et al.
(författare)
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“I was told that I would not die from heart failure” : Patient perceptions of prognosis communication
- 2018
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Ingår i: Applied Nursing Research. - : Elsevier. - 0897-1897 .- 1532-8201. ; 41, s. 41-45
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Tidskriftsartikel (refereegranskat)abstract
- Aim and objectives To describe patients’ experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis.BackgroundProfessionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs.MethodsAn inductive and exploratory design was used. A total of 24 patients (75% men, 52–87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data.Findings Two overarching themes, “The message sent” and “Hoping for the best or preparing for the worst”, each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences.Conclusion 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.
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| 7. |
- Hjelmfors, Lisa, et al.
(författare)
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I was told that I would not die from heart failure
- 2018
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Ingår i: Applied Nursing Research. - : W B SAUNDERS CO-ELSEVIER INC. - 0897-1897 .- 1532-8201. ; 41, s. 41-45
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Tidskriftsartikel (refereegranskat)abstract
- Aim and objectives: To describe patients experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis. Background: Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs. Methods: An inductive and exploratory design was used. A total of 24 patients (75% men, 52-87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data. Findings: Two overarching themes, "The message sent" and "Hoping for the best or preparing for the worst", each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences. Conclusion: 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.
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| 8. |
- Hjelmfors, Lisa, et al.
(författare)
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Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals
- 2020
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 19:1, s. 1-14
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
- Hjelmfors, Lisa, et al.
(författare)
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Patient-Nurse Communication about Prognosis and End-of-Life Care
- 2015
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Ingår i: Journal of Palliative Medicine. - : MARY ANN LIEBERT, INC. - 1096-6218 .- 1557-7740. ; 18:10, s. 865-871
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 10. |
- Hjelmfors, Lisa, et al.
(författare)
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Problem-based learning used in the context of cardiac rehabilitation : different scenes and different roles
- 2014
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Ingår i: Studies in Continuing Education. - : Routledge. - 0158-037X .- 1470-126X. ; 36:2, s. 218-232
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Tidskriftsartikel (refereegranskat)abstract
- Several studies show that how patients have difficulties in changing lifestyle even though such changes are essential because they are suffering from a life-threatening disease. Coronary artery disease (CAD) patients met 13 times during a year and used problem-based learning (PBL) to improve their empowerment and self-efficacy in making lifestyle changes. District nurses functioned as tutors, helping patients to formulate issues and to state self-care goals. To identify and describe the enactment of PBL, an ethnographic approach was used, including, for example, participant observations and interviews, all derived from six sessions of the education programme. Five different enactments were found, metaphorically expressed as: ‘The study circle’, ‘The classroom’, ‘The expert consultation’, ‘The therapy session’ and ‘The coffee party’. The education programme did not always function as it was supposed to according to the model, but perhaps this should not be seen as a failure of the pedagogical intervention since these enactments as a whole seem to be a way for the patients to be able to make healthy lifestyle changes. The metaphors can broaden the understanding of what can happen when implementing problem-based learning in health care practice.
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| 11. |
- Hjelmfors, Lisa, et al.
(författare)
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Simulation to Teach Nursing Students About End-of-Life Care
- 2016
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Ingår i: Journal of Hospice and Palliative Nursing. - : Lippincott Williams & Wilkins. - 1522-2179 .- 1539-0705. ; 18:6, s. 512-518
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 12. |
- Hjelmfors, Lisa, et al.
(författare)
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Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care
- 2018
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. Methods: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. Results: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. Conclusions: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.
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| 13. |
- Hjelmfors, Lisa, et al.
(författare)
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Variables Related to Communication About Prognosis Between Nurses and Patients at Heart Failure Clinics in Sweden and the Netherlands.
- 2018
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Ingår i: Journal of Cardiovascular Nursing. - : Lippincott Williams & Wilkins. - 0889-4655 .- 1550-5049. ; 33:2, s. E1-E6
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In contrast to recommendations in recent guidelines, prognosis is not optimally discussed with patients with heart failure (HF). Reasons for not doing so can be related to both patient and provider characteristics.PURPOSE: The purpose of the study was to explore which patient- and nurse-related variables influence discussing prognosis with patients at an HF clinic.METHOD: Data from a previous survey on attitudes and clinical practice of HF nurses on discussing prognosis that was conducted in Sweden and the Netherlands were combined with data from a registration on topics that nurses discussed with their patients during a prespecified week at the HF clinic. Multivariable logistic regression analysis was performed to assess which variables are related to discussing prognosis.RESULTS: A total of 275 HF nurses (mean age, 49 years) and data of 1633 patients with HF (mean age, 71 years) were included in the study. Prognosis was discussed with 42% of all patients during the visit at the HF clinic. Patients with whom prognosis was discussed were more often in New York Heart Association classes III to IV (odds ratio [OR], 1.81; 95% confidence interval [CI], 1.44-2.26). Nurses discussing prognosis reported more knowledge on the topic (OR, 1.71; 95% CI, 1.36-2.16) and discussed more topics with the patient (OR, 1.27; 95% CI, 1.21-1.32). Dutch HF nurses were more likely to discuss prognosis compared with their Swedish colleagues (OR, 1.83; 95% CI, 1.43-2.33).CONCLUSIONS: Discussing prognosis with patients with HF by nurses at the HF clinic is related to the characteristics of patients and HF nurses. Future interventions to improve communications about prognosis therefore should have a broad approach.
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| 14. |
- Jaarsma, Tiny, et al.
(författare)
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Talking about palliative care in heart failure
- 2018
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Ingår i: European Journal of Heart Failure. - : John Wiley & Sons. - 1388-9842 .- 1879-0844. ; 20:9, s. 1348-1349
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- This article refers to Which patients with heart failure should receive specialist palliative care? by R.T. Campbell et al., published in this issue on pages 1338-1347.
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| 15. |
- Kärner, Anita, 1961-, et al.
(författare)
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The effect of problem-based learning in patient education after an event of CORONARY heart disease - a randomised study in PRIMARY health care : design and methodology of the COR-PRIM study
- 2012
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Ingår i: BMC Family Practice. - : BioMed Central. - 1471-2296. ; 13:110
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundEven though there is convincing evidence that self-care, such as regular exercise and/or stopping smoking, alters the outcomes after an event of coronary heart disease (CHD), risk factors remain. Outcomes can improve if core components of secondary prevention programmes are structurally and pedagogically applied using adult learning principles e.g. problem-based learning (PBL). Until now, most education programs for patients with CHD have not been based on such principles. The basic aim is to discover whether PBL provided in primary health care (PHC) has long-term effects on empowerment and self-care after an event of CHD. Methods/DesignA randomised controlled study is planned for patients with CHD. The primary outcome is empowerment to reach self-care goals. Data collection will be performed at baseline at hospital and after one, three and five years in PHC using quantitative and qualitative methodologies involving questionnaires, medical assessments, interviews, diaries and observations. Randomisation of 165 patients will take place when they are stable in their cardiac condition and have optimised cardiac medication that has not substantially changed during the last month. All patients will receive conventional care from their general practitioner and other care providers. The intervention consists of a patient education program in PHC by trained district nurses (tutors) who will apply PBL to groups of 6–9 patients meeting on 13 occasions for two hours over one year. Patients in the control group will not attend a PBL group but will receive home-sent patient information on 11 occasions during the year. DiscussionWe expect that the 1-year PBL-patient education will improve patients’ beliefs, self-efficacy and empowerment to achieve self-care goals significantly more than one year of standardised home-sent patient information. The assumption is that PBL will reduce cardiovascular events in the long-term and will also be cost-effective compared to controls. Further, the knowledge obtained from this study may contribute to improving patients’ ability to handle self-care, and furthermore, may reduce the number of patients having subsequent CHD events in Sweden.
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| 16. |
- van der Wal, Martje H. L., et al.
(författare)
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Cardiologists attitudes on communication about prognosis with heart failure patients
- 2020
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Ingår i: ESC Heart Failure. - : WILEY PERIODICALS, INC. - 2055-5822. ; 7:3, s. 878-882
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Tidskriftsartikel (refereegranskat)abstract
- Aim According to guidelines, a prognosis should be discussed with all heart failure (HF) patients. However, many patients do not have these conversations with a healthcare provider. The aim of this study was to describe attitudes of cardiologists in Sweden and the Netherlands regarding this topic. Methods and results A survey was sent to 250 cardiologists in Sweden and the Netherlands with questions whether should the prognosis be discussed, what time should the prognosis be discussed, whom should discuss, what barriers were experienced and how difficult it is to discuss the prognosis (scale from 1-10). A total of 88 cardiologists participated in the study. Most cardiologists (82%) reported to discussing the prognosis with all HF patients; 47% at the time of diagnoses. The patients own cardiologist, another cardiologist, the HF nurse, or the general practitioner could discuss this with the patient. Important barriers were cognitive problems (69%) and a lack of time (64%). Cardiologists found it not very difficult to discuss the topic (mean score 4.2) with a significant difference between Swedish and Dutch cardiologist (4.7 vs. 3.7; P < 0.05). Conclusion Most cardiologists found it important to discuss the prognosis with HF patients although there are several barriers. Swedish cardiologists found it more difficult compared with their Dutch colleagues. A multidisciplinary approach seems important for improvement of discussing prognosis with HF patients.
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| 17. |
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