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- 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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| 2. |
- Liljeroos, Maria
(författare)
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Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
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| 3. |
- Mourad, Ghassan, 1974-
(författare)
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Improving care for patients with non-cardiac chest pain : Description of psychological distress and costs, and evaluation of an Internet-delivered intervention
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: More than half of all patients seeking care for chest pain do not have a cardiac cause for this pain. Despite recurrent episodes of chest pain, many patients are discharged without a clear explanation of the cause for their pain. A lack of explanation may result in a misinterpretation of the pain as being cardiac-related, causing worry and uncertainty, which in turn leads to substantial use of healthcare resources. Psychological distress has been associated with non-cardiac chest pain (NCCP), but there is limited research regarding the relationship between different psychological factors and their association with healthcare utilization. There is a need for interventions to support patients to manage their chest pain, decrease psychological distress, and reduce healthcare utilization and costs.Aim: The overall aim of this thesis was to improve care for patients with non-cardiac chest pain by describing related psychological distress, healthcare utilization and societal costs, and by evaluating an Internet-delivered cognitive behavioural intervention.Designs and methods: This thesis presents results from four quantitative studies. Studies I and II had a longitudinal descriptive and comparative design. The studies used the same initial cohort. Patients were consecutively approached within 2 weeks from the day of discharge from a general hospital in southeast Sweden. In study I, 267 patients participated (131 with NCCP, 66 with acute myocardial infarction (AMI), and 70 with angina pectoris (AP)). Out of these, 199 patients (99 with NCCP, 51 with AMI, 49 with AP) participated in study II. Participants were predominantly male (about 60 %) with a mean age of 67 years. Data was collected on depressive symptoms (Study I), healthcare utilization (Study I, II), and societal costs (Study II). Study III had a cross-sectional explorative and descriptive design. Data was collected consecutively on depressive symptoms, cardiac anxiety and fear of body sensations in 552 patients discharged with diagnoses of NCCP (51 % women, mean age 64 years) from four hospitals in southeast Sweden. Patients were approached within one month from the day of discharge. Study IV was a pilot randomized controlled study including nine men and six women with a median age of 66 years, who were randomly assigned to an intervention (n=7) or control group (n=8). The intervention consisted of a four-session guided Internet-delivered cognitive behavioural therapy (CBT) program containing psychoeducation, exposure to physical activity, and relaxation. The control group received usual care. Data was collected on chest pain frequency, cardiac anxiety, fear of body sensations, and depressive symptoms.Results: Depressive symptoms were prevalent in 20 % (Study IV) and 25 % (Study I, III) of the patients, and more than half of the patients still experienced depressive symptoms one year later (Study I). There were no significant differences in prevalence and severity of depressive symptoms between patients diagnosed with NCCP, AMI or AP. Living alone and younger age were independently related to more depressive symptoms (Study I). Cardiac anxiety was reported by 42 % of the patients in study III and 67 % of the patients in study IV. Fear of body sensations was reported by 62 % of the patients in study III and 93 % of the patients in study IV. On average, patients with NCCP had 54 contacts with primary care or the outpatient clinic per patient during the two-year study period. This was comparable to the number of contacts among patients with AMI (50 contacts) and AP (65). Patients with NCCP had on average 2.6 hospital admissions during the two years, compared to 3.6 for patients with AMI and 3.9 for patients with AP (Study II). Four out of ten patients reported seeking healthcare at least twice during the last year due to chest pain (Study III). On average, 14 % of patients with NCCP were on sick-leave annually, compared to 18 % for patient with AMI and 25 % for patient with AP. About 11-12 % in each group received a disability pension. The mean annual societal costs for patients with NCCP, AMI and AP were €10,068, €15,989 and €14,737 (Study II). Depressive symptoms (Study I, III), cardiac anxiety (Study III) and fear of body sensations (Study III) were related to healthcare utilization. Cardiac anxiety was the only variable independently associated with healthcare utilization (Study III). In the intervention study (Study IV), almost all patients in both the intervention and control groups improved with regard to chest pain frequency, cardiac anxiety, fear of body sensations, and depressive symptoms. There was no significant difference between the groups. The intervention was perceived as feasible and easy to manage, with comprehensible language, adequate and varied content, and manageable homework assignments.Conclusions: Patients with NCCP experienced recurrent and persistent chest pain and psychological distress in terms of depressive symptoms, cardiac anxiety and fear of body sensations. The prevalence and severity of depressive symptoms in patients with NCCP did not differ from patients with AMI and patients with AP. NCCP was significantly associated with healthcare utilization and patients had similar amount of primary care and outpatient clinic contacts as patients with AMI. The estimated cumulative annual national societal cost for patients with NCCP was more than double that of patients with AMI and patients with AP, due to a larger number of patients with NCCP. Depressive symptoms, cardiac anxiety and fear of body sensations were related to increased healthcare utilization, but cardiac anxiety was the only variable independently associated with healthcare utilization. These findings imply that screening and treatment of psychological distress should be considered for implementation in the care of patients with NCCP. By reducing cardiac anxiety, patients may be better prepared to handle chest pain. A short guided Internet-delivered CBT program seems to be feasible. In the pilot study, patients improved with regard to chest pain frequency, cardiac anxiety, fear of body sensations, and depressive symptoms, but this did not differ from the patients in the control group who received usual care. Larger studies with longer follow-up are needed to evaluate both the short and long- term effects of this intervention.
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| 4. |
- Näsström, Lena, 1967-
(författare)
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Participation in heart failure home-care : Patients’ and partners’ perspectives
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Patient participation is important for improving outcomes and respecting selfdetermination and legal aspects in care. Heart failure is a chronic condition that puts high demands on self-care and patient participation. Patients often need advanced care due to deterioration of their heart failure symptoms, and one option is to provide care as home-care. There is limited knowledge of how patients with heart failure and their partners view participation in home-care.Aim: The overall aim of this thesis was to describe different perspectives of participation in structured heart failure home-care among patients with heart failure and their partners.Methods: All patients in this thesis received structured heart failure home-care, according to a model aiming to facilitate care, where safety, participation, and gaining knowledge about the illness and treatment, are in focus. Study I had a prospective pre-post longitudinal design including 100 patients with heart failure receiving home-care. Data was collected by selfadministered questionnaires. Study II had a descriptive design. Nineteen patients receiving home-care were interviewed, and data was analysed using qualitative content analysis. Study III had a descriptive and explorative design. Data was collected by video-recorded observations of 19 home visits and analysed by qualitative content analysis. Study IV had a parallel convergent mixed-method design including 15 partners of patients receiving structured home-care. Data was collected by interviews and self-administered questionnaires. Datasets were first analysed separately and then together.Results: Better self-care behaviour was significantly associated with all measured aspects of participation. Participation by received information increased significantly during the 12-month follow-up (I). Patients’ descriptions of participation included communication between patients and health care professionals, access to care, active involvement in care, a trustful relation with health care professionals, and options for decision-making(II). Observed care encounters revealed that participation was made possible by; (i) interaction, including exchange of care-related information, care-related reasoning, and collaboration, (ii) an enabling approach, including the patient expresses own wishes and shows an active interest, and the nurse is committed and invites to a dialogue (III). Partners scored fairly positive for their participation in care and they performed different levels of caregiving tasks. Descriptions of participation included; adapting to the caring needs and illness trajectory, mastering caregiving demands, interacting with care providers, and gaining knowledge to comprehend the health situation. The mixed-method results showed both convergent results and expanded knowledge (IV).Conclusions: Structured heart failure home-care facilitated participation both for patients and their partners. Patient participation with regard to received information improved significantly after receiving home-care. Aspects of patient participation were consistently associated with better self-care behaviour. Patients’ and partners’ descriptions revealed many aspects of participation, and observed home visits revealed how interaction and an enabling approach underpinned participation.
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