| 1. |
- Andreassen, Maria, 1966-
(författare)
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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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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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-
(författare)
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Interrogating Atherosclerotic Plaque Biology Through Responses to Cardiovascular Risk Management and Imaging
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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-
(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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| 4. |
- Pettersson, Sara, 1976-
(författare)
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Supporting Self-care in Migrants with Type 2 Diabetes
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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-
(författare)
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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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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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. |
- 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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| 7. |
- Lundgren, Johan, 1977-
(författare)
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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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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.
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| 8. |
- 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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| 9. |
- Waldréus, Nana
(författare)
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Thirst in Patients with Heart Failure : Description of thirst dimensions and associated factors with thirst
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Nurses and other health care professionals meet patients with heart failure (HF) who report they are thirsty. Thirst is described by the patients as a concern, and it is distressing. Currently there are no standardized procedures to identify patients with increased thirst or to help a patient to manage troublesome thirst and research in the area of thirst is scarce. In order to prevent and relieve troublesome thirst more knowledge is needed on how thirst is experienced and what factors cause increased thirst.Aim: The aim of this thesis was to describe the thirst experience of patients with HF and describe the relationship of thirst with physiologic, psychologic and situational factors. The goal was to contribute to the improvement of the care by identifying needs and possible approaches to prevent and relieve thirst in patients with HF.Methods: The studies in this thesis used a cross-sectional design (Study I) and prospective observational designs (II-IV). Studies include data from patients with HF who were admitted to the emergency department for deterioration in HF (I, IV) or visited an outpatient HF clinic for worsening of HF symptoms (III); others were patients who were following up after HF hospitalization (II), and patients with no HF diagnosis who sought care at the emergency department for other illness (I). Patients completed questionnaires on thirst intensity, thirst distress, HF self-care behaviour, feeling depressive and feeling anxious. Data on sociodemographic, clinical characteristics, pharmacological treatment and prescribed fluid restriction were retrieved from hospital medical records and by asking the patients. Data were also collected from blood, urine and saliva samples to measure biological markers of dehydration, HF severity and stress.Results: Thirst was prevalent in 1 out of 5 patients (II) and 63% of patients with worsening of HF symptoms experienced moderate to severe thirst distress at hospital admission (IV). Patients at an outpatient HF clinic who reported thirst at the first visit were more often thirsty at the follow-up visits compared to patients who did not report thirst at the first visit (II). Thirst intensity was significantly higher in patients hospitalized with decompensated HF compared to patients with no HF (median 75 vs. 25 mm, visual analogue scale [VAS] 0-100 mm; P < 0.001) (I). During optimization of pharmacological treatment of HF, thirst intensity increased in 67% of the patients. Thirst intensity increased significantly more in patients in the high thirst intensity group compared to patients in the low thirst intensity group (median +18 mm vs. -3 mm; P < 0.001) (III). Patients who were admitted to the hospital with high thirst distress continued to have high thirst distress over time (IV). A large number of patients were bothered by thirst and feeling dry in the mouth when they were thirsty (III, IV). Patients with a fluid restriction had high thirst distress over time and patients who were feeling depressed had high thirst intensity over time (IV). Thirst was associated with fluid restriction (III-IV), a higher serum urea (IIIII), and depressive symptoms (II).Conclusions: A considerable amount of patients with HF experiences thirst intensity and thirst distress. Patients who reported thirst at the first follow-up more often had thirst at the subsequent follow-ups. The most important factors related to thirst intensity or thirst distress were a fluid restriction, a higher plasma urea, and depressive symptoms. Nurses should ask patients with HF if they are thirsty and measure the thirst intensity and thirst distress, and ask if thirst is bothering them. Each patient should be critically evaluated if a fluid restriction really is needed, if the patient might be dehydrated or needs to be treated for depression.
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| 10. |
- Eckerblad, Jeanette, 1966-
(författare)
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Symptom burden among people with chronic disease
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Chronic diseases tend to increase with old age. Older people with chronic disease are commonly suffering from conditions which produce a multiplicity of symptoms and a decreased health-related quality of life. Nurses have a responsibility to prevent, ease or delay a negative outcome through symptom management, or assist in achieving an acceptable level of symptom relief.Aim: The overall aim of the thesis was to describe different aspects of symptom burden from the perspective of community-dwelling people with chronic disease.Methods: This thesis is based upon four papers that used both quantitative and qualitative data to describe different aspects of symptom burden, experienced by people with chronic diseases. Paper (I) is a cross-sectional study with 91 participants diagnosed with chronic obstructive pulmonary disease. Papers (II and IV) are based upon secondary outcome data from a randomized controlled trial with 382 community-dwelling older people with multimorbidity. Paper (II) is a cross-sectional study and Paper (IV) has a descriptive and an explorative design reporting on the trajectory of symptom prevalence and symptom burden. Paper (III) is a qualitative study with participants from the AGe-FIT.Results: Among people diagnosed with COPD the most prevalent symptoms with the highest symptom burden scores were shortness of breath, dry mouth, cough, sleep problems, and lack of energy, with just a few differences between participants with moderate and severe airflow limitation (I). For older people with multimorbidity, pain was the symptom with the highest prevalence and burden. Other highly prevalent symptoms were lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score (II). The symptoms experienced by the older people were persistent and the symptom burden remained high over time (IV). The experience of living with a high symptom burden was described as an endless struggle. The analysis revealed an overall theme, “To adjust and endure” and three sub-themes, “to feel inadequate and limited”, “to feel dependent”, and “to feel dejected” (III).Conclusions: The results of this thesis indicate the importance of early symptom identification. People with chronic diseases have an unmet need for optimized treatment that focuses on the total symptom burden, and not only disease specific symptoms. A large proportion of older people with multimorbidity suffer a high and persistent symptom burden, and the prevalence and trajectory of pain are high. Older people sometimes think their high age is the reason they experience a diversity of symptoms, and they do not always communicate these to their health-care provider.
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