| 1. |
- Andreassen, Maria, 1966-
(author)
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Digital support for people with cognitive impairment : An intervention to increase the occupational performance in everyday life
- 2021
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Doctoral thesis (other academic/artistic)abstract
- Introduction: Senior people with cognitive impairment may experience an inability to manage everyday life due to difficulties related to time management, and planning and structuring everyday life. These difficulties can affect people negatively, for example not remembering to carry out future planned activities. Interventions that compensate for lost cognitive ability often include using assistive technology for cognition (ATC). By investigating the feasibility and potential effects of an intervention with the interactive digital calendar with active reminders, RemindMe, knowledge can be generated about aspects of learning to use and using digital support. Further, knowledge can also be generated about occupations in everyday life that people need to receive reminders for, both during the rehabilitation period and two years after the rehabilitation period. This knowledge can support building evidence-based interventions in rehabilitation for people with cognitive impairment using digital technology. Aim: The overall aim of this thesis was to study an interactive digital calendar with mobile phone reminders (RemindMe) for people with cognitive impairment, as support to increase the occupational performance in everyday life. Methods: This thesis includes four studies, using both qualitative and quantitative data collection methods. Study I was a focus group interview, exploring twenty senior people aged between 66 and 85 and their experiences of learning to use and using RemindMe in everyday life. The seniors had used RemindMe for six weeks and had received weekly support calls from a research assistant during the study period. After six weeks, the participants took part in focus group interviews. Four focus group interviews were conducted, analysed with content analyses. The use of RemindMe and feasibility aspects were also investigated in study II with a mixed-methods design. Eight patients with cognitive impairment, aged between 26–68, and seven occupational therapists participated. The occupational therapists were experienced in occupational therapy and were working at three different outpatient rehabilitation clinics in southeast Sweden. They had a median of 20 years of experience (range of 2–25 years). The patients received an introduction to using RemindMe, as well as weekly support calls from occupational therapists or a research assistant for eight weeks. Quantitative data was collected using the Quebec User Evaluation of Satisfaction with Assistive Technology 2.0 (QUEST 2.0). The frequency of and the actual use of RemindMe was generated by RemindMe. Qualitative data was collected via face-to-face interviews with occupational therapists, via field notes from the weekly support conversations, and during the assessments with patients with cognitive impairment. Analyses were conducted using descriptive statistics and directive deductive content analyses. Study III investigated the intervention with RemindMe, addressing plausible outcome measures by investigating changes in outcomes, impact on occupational performance, independence, health-related quality of life, and the psychosocial impact of support used for people with cognitive impairment. The design was a pilot randomized controlled trial with fifteen patients, with cognitive impairment, aged between 26–79, randomized to either an intervention group or a control group. The intervention group consisted of eight patients and the control group of seven patients. The outcome measures were assessed using the Canadian Occupational Performance Measure (COPM), the Functional Independence Measure (FIM), the EuroQol 5-Dimension Visual Analog Scale (EQ-5D-VAS), and the Psychosocial Impact of Assistive Devices Scale (PIADS). Study III was registered at ClinicalTrails.gov, identifier: NCT04470219. Study IV explored seven patients, aged between 51–71, experiences of strategies and support used to establish a new everyday life and their experience of support for time management and planning and structuring everyday life due to cognitive impairment. The study was a qualitative, semi-structured, face-to-face interview. The interviews were analysed with inductive content analysis. Results: The results of this thesis address learning to use and using assistive technology for cognition (ATC) in everyday life and outcomes from using RemindMe. The participants were accustomed to using calendars. However, there were differences in terms of whether they preferred to use “low tech” calendars (such as paper calendars), or “high tech” calendars (for example, digital calendars with reminders), or whether a combination of “low and high tech” was preferred (Studies I and IV). Other support strategies were also described, for example, the conscious use of objects as reminders in the home environment or everyday life routines (Study IV). Participants were positive towards the use of digital technology, especially mobile phones/smartphones that they easily can carry with them (Studies I and IV). Participants also described the advantage of using digital technology with active reminders and audio prompts, signalling, and telling them when to do something. This was described as the reminder “talks to me” (Study I). The actual use of RemindMe showed that reminders were for example used for taking medication, do exercises, or meeting family or friends (Study II). Occupational therapists in Study II described that their patients benefited from using reminders and that patients have to be active in their everyday life and perceive a need for reminders. The outcomes from measurements of occupational performance (COPM) indicate that patients in the intervention group increased their occupational performance and their satisfaction with their performance compared with the control group. The intervention group also increased their independence (FIM) in the communication and social and intellectual abilities subscales (Study III). Conclusions: The results indicate the importance of choosing a reminder that is suited to the patient’s needs, and this reminder can be either “low tech” or “high tech”. The important thing is that the reminder matches the patient’s needs. The result also indicates that for people with cognitive impairment to make full use of the reminder in everyday life, support with learning to use and using the device for a longer period is needed. Participants (Studies II, III, and IV) described scheduling and receiving active reminders as important for achieving a feeling of comfort and security. Another technique was to find habits and routines or objects to support time management and planning and structuring everyday life. Having a sense of comfort and security involved being in control of everyday life. It can be understood as people talking about being fully involved in their life situations, and in that sense as experiencing participation. However, this was s not investigated in the present studies. Two years after the rehabilitation period, digital or paper calendars were used to establish a new everyday life. Active reminders were trusted and resulted in a feeling of comfort and security as well as a sense of control and independence in everyday life.
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| 2. |
- Good, Elin, 1983-
(author)
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Interrogating Atherosclerotic Plaque Biology Through Responses to Cardiovascular Risk Management and Imaging
- 2023
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Doctoral thesis (other academic/artistic)abstract
- Atherosclerosis causes more deaths than any other disease worldwide, and the cause of death is most commonly a rupture of a vulnerable atherosclerotic plaque, resulting in a thrombotic event in the heart or brain. The major risk factors for plaque progression are well known, but all the mechanisms that drive atherosclerotic plaques towards catastrophic events are not yet fully elucidated. This thesis revolves around the atherosclerotic plaque; how plaques can be analysed using cardiovascular magnetic resonance imaging and the study of biological responses to cardiovascular risk management. In Study I we interrogated the quality of cardiovascular risk management in patients diagnosed with high-grade carotid stenosis and found that cardiovascular risk management was deficient in all aspects, despite the very high risk for events in these patients. Thus, we designed the next two studies to address the unmet clinical need for improved cardiovascular risk management in patients with carotid atherosclerosis while at the same time asking mechanistic questions about the effect of this approach on lymphocyte phenotypes (Study II) and on plaque composition (Study III). In Study II, the effect of cardiovascular risk management on Natural Killer cell, Natural Killer T cell and T lymphocyte subpopulations were studied in patients with carotid atherosclerosis. Our results show a polarisation away from a senescent phenotype towards more naïve i.e., juvenile cell types suggesting a transition towards a possibly less pro-inflammatory lymphocyte profile. In Study III, we applied a newly developed quantitative Dixon MRI technique to the quantification of lipid rich necrotic core and hemorrhage inside atherosclerotic plaques. Employing this technique, we explored the relationships between these high-risk plaque compositional features and circulating lipoproteins as they changed over time in response to cardiovascular risk management. In the current study there was no evidence for such a linear relationship. To further study the associations between inflammation and quantitative plaque measurements we explored in Study IV the relationship between inflammation in atherosclerotic plaques as measured by 18F-FDG uptake and features of high-risk plaque as measured by quantitative Dixon MRI. To facilitate the use of carotid MRI in larger cohorts we developed in Study V a technique for the segmentation of the carotid artery using supervised machine learning. Taken together these studies describe the importance of cardiovascular risk management, the complexity of atherosclerotic plaque biology and they propose new strategies for quantitative plaque imaging.
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| 3. |
- Hjelmfors, Lisa, 1984-
(author)
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Communication about the Heart Failure Trajectory in Patients, their Families and Health Care Professionals
- 2018
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Doctoral thesis (other academic/artistic)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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| 4. |
- Pettersson, Sara, 1976-
(author)
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Supporting Self-care in Migrants with Type 2 Diabetes
- 2024
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Doctoral thesis (other academic/artistic)abstract
- Background: Diabetes Mellitus, specifically type 2 diabetes, represents a growing global health concern, with a prevalence predicted to reach 783 million by 2045. Type 2 diabetes leads to personal suffering, reduced productivity and significant health care cost. Selfcare is the most important cornerstone in the treatment of type 2 diabetes and patient education is a prerequsite for performing adequate self-care. Migrants show a risk of uncontrolled diabetes and the prevalence of type 2 diabetes in migrants, living in European countries, poses challenges as cultural and language barriers might affect health care outcomes Culturally appropriate diabetes education is important for improving glycaemic control and health outcomes in migrant populations. In the Swedish health care setting, diabetes care follows national guidelines and is predominantly provided in primary health care centers. However, criticism has arisen regarding the lack of tailored care for migrants, leading to less effective health care. This thesis explores patients’ competence and health providers’ cultural competence influencing patient’s self-care.Aim: The overall aim of this thesis was to gain knowledge that can contribute to optimising support of self-care in migrants with type 2 diabetes. The aim in study I was to compare foreign‐ and Swedish‐born persons, diagnosed with type 2 diabetes, to study whether there are dissimilarities in knowledge about diabetes mellitus and to study determinants of knowledge. The aim in study II was to describe the cultural competence of primary health care professionals that specialize in diabetes care and to examine related factors that affect cultural competence. In study III the aim was to describe the process of developing a culturally appropriate tool to support self-care in migrants with type 2 diabetes and in study IV the aim was to evaluate the feasibility of a culturally appropriate website, supporting self-care in migrants with type 2 diabetes.Methods: This thesis includes four studies with two cross-sectional descriptive studies one co-design study, and one feasibility study. In study I where knowledge and glycaemic control were assessed, patients diagnosed with type 2 diabetes, receiving care at a primary health care center, participated. The data was collected with validated questionnaire and described by numbers and percentage, mean (SD) and median (range). Comparisons between groups were made by tests of statistical significance where p < 0.05 was considered statistically significant. For analytical statistics, to identify any independent associations between knowledge and socio‐demographic variables and diabetes related characteristics, multiple logistic regression analysis was performed. Data was collected between September 2014 and March 2016. Study II was also a cross-sectional study and aimed to measure perceived cultural competence in health care providers. Data was collected by a questionnaire from January to July 2020. Data was analysed by descriptive statistics and to analyse sociodemographic factors associated with the three domains, univariate analyses with bivariate correlations, independent Student t-tests, or one-way ANOVA were employed, as appropriate. Linear regression analyses were conducted, including sociodemographic factors. The third study used a co-design process, involving fourteen migrant patients, ten health care providers in diabetes care, and four researchers with data collection between February 2021 to December 2022. In the fourth study feasibility of the developed culturally appropriate website was evaluated through qualitative interviews with seven migrant patients and ten health care providers who had previously participated in study III. The interviews focused on four areas: Acceptability, Demand, Implementation, and Integration of the website. Data was analysed by directed content analysis.Result: The results show a significant gap in competence, including knowledge about diabetes and poor glycaemic control in migrants, particularly those born in the Middle East with type 2 diabetes. The thesis emphasizes the influence of cultural factors on selfcare, highlighting the need for cultural competence in health care providers working with diverse populations. A significant proportion of health care providers perceived themselves as open and aware regarding clients with other cultural backgrounds, but the health care providers perceived a lack of organizational support to improve cultural competence. In the third study, the need for a comprehensive tool providing culturally appropriate information was emphasized by both patients and health care providers. A prototype of a culturally appropriate website developed with the aim of improving the patients' competence and thereby supporting the self-care of migrants with type 2 diabetes. The website was then developed into a mobile-friendly website that patients and health care providers tested and evaluated. Both patients and health care providers experienced the website as culturally appropriate with information at a reasonably basic level, in patient's own language (Arabic) and with information provided in several different ways, such as written information, images, videos and thus accessible to those who cannot read. The participants expressed interest and demand for the website, and the planned strategy for implementation was considered reasonable. They also felt it was possible to integration the tool into existing primary health care infrastructure, as a complementary cultural appropriate tool.Conclusions: There are vulnerable groups in the society such as migrants born in the Middle East, with type 2 diabetes. This thesis highlights the importance of patient’s competence and health care providers‘ cultural competence and the influence of self-care. The development of a culturally appropriate tool, such as the website, is proposed as a practical solution to enhance patient’s competence and support health care providers in delivering culturally competent care.
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| 5. |
- Säfström, Emma, 1980-
(author)
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Continuity of care after hospitalization due to cardiac conditions : Patients' perceptions, validity and reliability of a measure, and associations with outcomes
- 2023
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Doctoral thesis (other academic/artistic)abstract
- Background: Cardiac conditions are a common cause of hospitalization worldwide. The need for healthcare continues after hospital discharge and most commonly includes follow-up within primary healthcare centers or specialized outpatient cardiology clinics. This transition from the hospital to outpatient or primary-care settings jeopardizes the continuity of care. Continuity of care refers to the coordination of healthcare between different healthcare personnel and settings over time. There are three types of continuity of care: informational, relational, and management continuity. Continuity of care is essential after hospitalization due to cardiac conditions, and is associated with several positive clinical outcomes; however, available patient-reported measures of continuity of care during the posthospital period needs further validation. Accurate measurements would improve our ability to evaluate implementations designed to enhance continuity of care. Moreover, there is a lack of knowledge about whether the associations between continuity of care, perceived control, and self-care could explain variations in health-related quality of life and hospital readmissions in patients with cardiac conditions.Aim: The overall aim of this thesis was to contribute to improving care after hospitalization for patients with cardiac conditions by describing continuity of care from the patient’s perspective and increasing the understanding of how continuity of care can be measured and how it can influence patient outcomes.Method: All four studies had a cross-sectional design using a consecutive sampling procedure (I–IV). Study I was a single-center study and studies II–IV were multicenter studies. Data was collected using structured telephone interviews (I), questionnaires (II–IV), and review of medical charts (I–IV). The timescale for data collection ranged from one week (I) to six weeks after discharge (II–IV). The Patient Continuity of Care Questionnaire (PCCQ), a 27-item questionnaire to measure patients’ perceptions of continuity of care, was translated and culturally adapted to Swedish. The factor structure was reviewed (II), and a short version including 12 of the items was evaluated (III). A conceptual model was constructed to examine the associations between continuity of care, perceived control, self-care, health-related quality of life, and hospital readmissions (IV). The data was analyzed using descriptive and non-parametric statistics (I), confirmatory factor analysis, test-retest estimation (II), the Rasch measurement model (III), and structural equation modeling (SEM) (IV).Results: Patients in study I were hospitalized due to heart failure, and in study II–IV, patients hospitalized due to angina pectoris, atrial fibrillation, heart failure and myocardial infarction were included. Most patients received a written discharge summary. Despite this, many patients lacked knowledge about whom to contact regarding deterioration or questions after discharge. The patients described feeling unsafe and experienced a lack of clarity about their primary healthcare contact (I). The confirmatory factor analysis of the Swedish version of the PCCQ overall confirmed the sixfactor structure, but minor revisions were made to achieve a satisfactory model fit. The ordinal alpha for the subscales was satisfactory and ranged between 0.82 and 0.95 (II). In the 12-item short version (PCCQ-12) (III), two pairs of items showed signs of response dependence and the first two response options were disordered in all items. Apart from this, the PCCQ-12 was found to be a unidimensional questionnaire with sound psychometric properties and the ordinal alpha was 0.94. Patients most commonly reported lower levels of continuity of care on matters relating to management continuity after discharge. In particular, women, older patients, and those hospitalized due to angina pectoris reported lower levels of continuity. In study IV, the conceptual model suggested that patients who perceive higher levels of continuity of care also experience higher levels of perceived control and perform self-care to a greater extent, significantly improving their health-related quality of life and reducing the risk of hospital readmission. The association between continuity of care and self-care was mediated by perceived control.Conclusion: Patients’ perceptions of continuity of care after hospitalization due to cardiac conditions can be measured using the PCCQ. The longer, revised PCCQ can be used to evaluate the three types of continuity individually, and the PCCQ-12 can be used in a time-restricted setting or to reduce respondents’ burden. Even though most patients received a written discharge summary, this was not enough for them to perceive continuity of care after hospitalization. An area of concern is management continuity and elderly patients, women, and those hospitalized due to angina pectoris. Finally, according to the conceptual model, interventions aiming to improve health-related quality of life or reduce readmission should include actions to facilitate continuity of care.
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| 6. |
- Lundgren, Johan, 1977-
(author)
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Behind the Screen : -Internet-Based Cognitive Behavioural Therapy to Treat Depressive Symptoms in Persons with Heart Failure
- 2018
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Doctoral thesis (other academic/artistic)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.
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| 7. |
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| 8. |
- Friedrichsen, Maria, 1966-, et al.
(author)
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Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care — A qualitative study
- 2023
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In: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 79:11, s. 4292-4303
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Journal article (peer-reviewed)abstract
- AimsTo describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units.DesignA qualitative, reflexive thematic design with an inductive analysis was used.MethodsData were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR).ResultsTwo main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals.ConclusionThirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.Patient or Public ContributionNo patient or public contribution.ImpactIn palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life.Reporting MethodThe study was guided by the SRQR.What does this Article Contribute to the Wider Global Clinical Community?Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.
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| 9. |
- Ingadóttir, Brynja
(author)
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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
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Doctoral thesis (other academic/artistic)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.
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| 10. |
- Johansson, Peter, 1962-, et al.
(author)
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The impact of internet-based cognitive behavioral therapy and depressive symptoms on self-care behavior in patients with heart failure : A secondary analysis of a randomised controlled trial
- 2021
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In: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 116
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Journal article (peer-reviewed)abstract
- BACKGROUND: Patients with chronic heart failure may require treatment of depressive symptoms to improve self-care behaviour.OBJECTIVES: To investigate the impact of internet-based cognitive behavioral therapy (CBT) on self-care behaviour in heart failure patients, and to study the association between changes in depressive symptoms and changes in self-care behaviour.DESIGN: A secondary analysis of data collected in a pilot randomized controlled study.SETTING: 50 heart failure patients with depressive symptoms were recruited from four hospitals in Sweden.METHODS: Patients were randomized to nine weeks of internet-based CBT (n = 25) or to an active control group participating in an online discussion forum (n = 25). In week two and three, those in the internet-based CBT group worked with psychoeducation about heart failure and depression, emphasizing heart failure self-care. During the same weeks those in the on-line discussion forum specifically discussed heart failure self-care. Patient Health Questionnaire-9 was used to measure depressive symptoms at baseline and at the nine-week follow-up. The European Heart Failure Self-care Behaviour Scale-9 was used to measure self-care behaviour (i.e., the summary score and the subscales autonomous based, provider based and consulting behaviour) at baseline, and at the three-week and nine-week follow-ups.RESULTS: No significant differences were found in self-care between the patients in the internet-based CBT and the patients in the online discussion group at the three- and nine-week follow-up. Within-group analysis of the changes in the European Heart Failure Self-care Behaviour Scale showed that from baseline to week three, the summary score increased significantly for the online discussion group (p = 0.04), but not for the internet-based CBT group (p = 0.15). At the nine-week follow-up, these scores had decreased. Similarly, consulting behaviour improved at week three for the online discussion group (p = 0.04), but not for the internet-based CBT group (p = 0.22). Provider-based adherence at the nine-week follow-up had increased from baseline in the internet-based CBT group (p = 0.05) whereas it had decreased in the on-line discussion group. Improvement in symptoms of depression was significantly associated with improvement in autonomy-based self-care (r = 0.34, p = 0.03).CONCLUSION: Improvement in depressive symptoms was associated with improved autonomous-based self-care. ICBT for depression in HF may benefit aspects of self-care that are vital to improve symptoms and prognosis.
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