| 1. |
- Hjelmfors, Lisa, 1984-
(författare)
-
Communication about the Heart Failure Trajectory in Patients, their Families and Health Care Professionals
- 2018
-
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
|
|
| 2. |
- Ingadóttir, Brynja
(författare)
-
Learning as a patient : What and how individuals want to learn when preparing for surgery, and the potential use of serious games in their education
- 2016
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Surgical patients need knowledge to participate in their own care and to engage in self-care behaviour in the perioperative period which is important for their recovery. Patient education facilitates such knowledge acquisition and several methods can be used to facilitate it, for example, face-to-face education and brochures or using information technology such as website or computer games. Healthcare professionals have been slow to seize the possibilities that information technology has to offer within the field, including the use of serious games. To optimise patient education, the information is needed on the patients’ needs and preferences and what they think about the idea of using a serious game to learn about self-care.Aim: The overall aims of this thesis were to describe the knowledge expectations of surgical patients, to describe how surgical patients want to learn, and to explore the potential use of serious games in patient education.Methods: This thesis includes four studies that used both quantitative and qualitative data to describe aspects of patient learning in relation to surgery. Study I has a prospective and comparative design with survey data collected before surgery and before hospital discharge from 290 patients with osteoarthritis undergoing knee arthroplasty. Data was collected on fulfilment of knowledge expectations and related factors. Study II is a cross-‐sectional study in 104 patients with heart failure who had been scheduled for cardiac resynchronisation therapy (CRT) device implantation. Data was collected on knowledge expectations and related factors. In Study III the perceptions of 13 surgical patients towards novel and traditional methods to learn about post-operative pain management are explored in a qualitative interview study using content analysis. Study IV describes the development and evaluation of a serious game to learn about pain management with the participation of 20 persons recruited from the public. The game was developed by an interdisciplinary team following a structured approach. Data on the efficacy and usability of the game was collected in one session with questionnaires, observations and interviews.Results: Participants reported high knowledge expectations. Knowledge expectations were highest within the bio-physiological knowledge dimension on disease, treatment and complications and the functional dimension on how daily activities are affected, both of which include items on self-care. Most participants wanted to know about the possible complications related to the surgery procedure. In none of the knowledge dimensions the expectations of participants were fulfilled. Participants received most knowledge on the physical and functional issues and received least on the financial and social aspects of their illness. The main predictor of fulfilment of knowledge expectations was having access to knowledge in the hospital from doctors and nurses. Trust in the information source and own motivation to learn shaped how the participants thought about different learning methods. Although the participants were open to using novel learning methods such as websites or games they were also doubtful about their use and called for advice by healthcare professionals. To develop a serious game with the goal to learn about pain management, theories of self-care and adult learning, evidence on the educational needs of patients about pain management and principles of gamification were found useful. The game character is a surgical patient just discharged home from hospital who needs to attend to daily activities while simultaneously managing post-operative pain with different strategies. Participants who evaluated a first version of the serious game improved their knowledge and described usability of the game as high. They were positive towards this new learning method and found it suitable for learning about pain management after surgery in spite of some technical obstacles.Conclusions: Surgical patients have high knowledge expectations about all aspects of their upcoming surgery and although they prefer direct communication with healthcare professionals as a source for knowledge they might be open to try using more novel methods such as games. Preliminary short-‐term results demonstrate that a serious game can help individuals to learn about pain management, and has the potential to improve knowledge. A careful introduction, recommendation, and support from healthcare professionals is needed for implementation of such a novel method in patient education.
|
|
| 3. |
- Lundgren, Johan, 1977-
(författare)
-
Behind the Screen : -Internet-Based Cognitive Behavioural Therapy to Treat Depressive Symptoms in Persons with Heart Failure
- 2018
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- IntroductionThe prevalence of depressive symptoms in persons with heart failure is higher than in age- and gender-matched populations not suffering from heart failure. Heart failure in itself is associated with an unpredictable trajectory of symptoms, a poor prognosis, high mortality and morbidity, and low health-related quality of life (HrQoL). With the addition of depressive symptoms to heart failure the negative health effects increase further. Though the negative consequences of depressive symptoms in heart failure are well known, there is a knowledge gap about the course of depressive symptoms in heart failure and about how to effectively manage these symptoms. Pharmacological treatment with serotonin reuptake inhibitors has not been able to demonstrate efficacy in persons with heart failure. In a few studies, cognitive behavioural therapy (CBT) delivered face-to-face, has demonstrated effects on depressive symptoms in persons with heart failure. However, currently there are barriers in delivering face-to-face CBT as there is a lack of therapists with the required training. As a solution to this, the use of Internet-based CBT (ICBT) has been proposed. ICBT has been shown to be effective in treatment of mild and moderate depression but has not been evaluated in persons with heart failure.AimThe overall aim of this thesis was to describe depressive symptoms over time and to develop and evaluate an ICBT intervention to treat depressive symptoms in persons with heart failure.Design and MethodsThe studies in this thesis employ both quantitative (Studies I, II and III) and qualitative (Studies II and IV) research methods. The sample in Study I (n=611) were recruited in the Netherlands. The participants (n=7) in Study II were recruited via advertisements in Swedish newspapers. Studies III and IV used the same cohort of participants (Study III n=50, Study IV n=13). These participants were recruited via an invitation letter sent to all persons who had made contact with healthcare services in relation to heart failure during the previous year, at the clinics of cardiology or medicine in four hospitals in southeast Sweden.Study I had a quantitative longitudinal design. Data on depressive symptoms was collected at baseline (discharge from hospital) and after 18 months. Data on mortality and hospitalisation was collected at 18 and 36 months after discharge from hospital. Study II employed three differentBehind the Screen2patterns of design, as follows: I) The development and context adaptation of the ICBT program was based on research, literature and clinical experience and performed within a multi-professional team. II) The feasibility of the program from the perspective of limited efficacy and function was investigated with a quantitative pre-post design. III) Participants’ experience of the ICBT program was investigated with a qualitative content analysis. Data on depressive symptoms was collected pre and post intervention. The time used for support and feedback was logged during the intervention, and qualitative interviews were performed with the participants after the end of the intervention. Study III was designed as a randomised controlled trial. A nine-week ICBT program adapted to persons with heart failure and depressive symptoms was tested against an online moderated discussion forum. Data on depressive symptoms, HrQoL and cardiac anxiety was collected at baseline (before the intervention started) and after the end of the intervention (approximately 10 weeks after the start of the intervention). Study IV had a qualitative design to explore and describe participants’ experiences of ICBT. The participants were recruited from within the sample in Study III and all had experience of ICBT. Data collection occurred after the ICBT program ended and was carried out using qualitative interviews by telephone.ResultsThe mean age of the samples used in this thesis varied between 62 and 69 years of age. Concerning the symptom severity of heart failure, most persons reported New York Heart Association (NYHA) class II (40-57%) followed by NYHA class III (36-41%). Ischaemic heart disease was the most common comorbidity (36-43%). The vast majority had pharmacological treatment for their heart failure. Six percent of the persons in Study I used pharmacological antidepressants. In Studies II and III, the corresponding numbers were 43% and 18% respectively.Among persons hospitalised due to heart failure symptoms, 38% reported depressive symptoms. After 18 months, 26% reported depressive symptoms. Four different courses of depressive symptoms were identified: 1) Non-depressed 2) Remitted depressive symptoms. 3) Ongoing depressive symptoms. 4) New depressive symptoms. The highest risk for readmission to hospital and mortality was found among persons in the groups with ongoing and new depressive symptoms.A nine-week ICBT program consisting of seven modules including homework assignments on depressive symptoms for persons with heart failure was developed and tested. The RCT study (Study III) showed no significant difference in depressive symptoms between ICBT and a moderated discussion forum. Within-group analysis of depressive symptoms demonstrated a significant decrease of depressive symptoms in the ICBT group but not in the discussion forum group.The participants’ experience of ICBT was described in one theme: ICBT- an effective, but also challenging tool for self-management of health problems. This theme was constructed based on six categories: Something other than usual healthcare; Relevance and recognition; Flexible, understandable and safe; Technical problems; Improvements by live contact; Managing my life better.ConclusionAfter discharge from hospital, depressive symptoms decrease spontaneously among a large proportion of persons with heart failure, though depressive symptoms are still common in persons with heart failure that are community dwelling. Depressive symptoms in persons with heart failure are associated with increased risk of death and hospitalisation. The highest risks are found among persons with long-term ongoing depressive symptoms and those developing depressive symptoms while not hospitalised.ICBT for depressive symptoms in heart failure is feasible. An intervention with a nine-week guided self-help program with emphasis on behavioural activation and problem-solving skills appears to contribute to a decrease in depressive symptoms and improvement of HrQoL.When ICBT is delivered to persons with heart failure and depressive symptoms the participants requests that the ICBT is contextually adapted to health problems related to both heart failure and depressive symptoms. ICBT is experienced as a useful tool for self-care and something other than usual healthcare. ICBT also requires active participation by the persons receiving the intervention, something that was sometimes experienced as challenging.
|
|
