| 1. |
- 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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| 2. |
- Andréasson, Frida
(författare)
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Doing informal care : Identity, couplehood, social health and information and communication technologies in older people’s everyday lives
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of the thesis has been a) to analyse how informal care influences the identity of carers and care recipients, their sense of couplehood and social health, and b) to explore the use of Information and Communication Technology (ICT) in the context of informal care and the everyday lives of older people. Study I focused on how older carers conceptualised their identity as carers on a Swedish online social forum, using a netnographic methodology. The findings indicated a change in self-perception as the carer role was acquired. Carers’ capacities were filtered through the needs of the care recipient, making their carer identities into invisible selves. The findings revealed that online communication had the potential to create a virtual space of social recognition. Study II aimed to reflect on carers’ experiences of participation in a co-design process consisting of user group sessions with carers and researchers. The goal was to develop a web-based support programme for carers. The findings emphasised a need to consider carers’ lifeworlds and to develop flexible human-centred design methodologies, that are able to balance carers’ needs and ideas with proposed research outcomes. Studies III and IV utilised an ethnographic methodology. In study III, the notion of couplehood in informal care was analysed. The findings showed that in the process of becoming a carer and a care recipient previous (often gendered) responsibilities were re- negotiated and new practicalities emerged. Although these changes were understood as a natural part of family life, they nevertheless led to changes in the (power) balance between spouses, expressed in terms of a professionalised relationship and a sense of social isolation. ICT was used as a means to get a respite from caring and uphold a social connection with others. In study IV, the social implications and consequences of spousal informal care and carers and care recipients’ experiences of illness and the ill body was explored. The findings showed that the participants experienced barriers to living life as before. Thoughts about or the presence of ill and “leaking” bodies thus lead to “self-chosen” social isolation or social distancing by others. The thesis highlights that informal care needs to be understood as an identity forming practice, having a significant impact on involved parties’ sense of couplehood, their social health and that ICT can contribute to ease carers’ and care recipients’ daily life.
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| 3. |
- Hellström Ängerud, Karin, 1967-
(författare)
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Symptoms and care seeking behaviour during myocardial infarction in patients with diabetes
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: In Myocardial infarction (MI) it is well established that timely diagnosis and treatment may reduce mortality and improve the prognosis. Therefore it is important that patients with MI seek medical care as soon as possible. Patients with diabetes have a higher risk for MI and worse prognosis compared to patients without diabetes. Previous research is inconclusive regarding symptoms and pre-hospital delay times in MI among patients with diabetes and there is lack of research in how patients with diabetes perceive, interpret and respond to MI symptoms. Aim: The overall aim of this thesis was to explore symptoms and care seeking behaviour during MI in patients with diabetes. Methods: This thesis comprises four studies. Studies I and II were based on data from the Northern Sweden MONICA myocardial infarction registry to describe symptoms in 4028 patients (I) and pre-hospital delay and factors associated with pre-hospital delay of ≥ 2 h in 4266 patients (II). Study III included 694 patients, at five hospitals in Sweden. The patients answered a questionnaire about symptoms, response to symptoms and delay times in MI. In study IV data were collected through interviews about experiences of getting MI and the decision to seek medical care. Results: Study I showed that typical MI symptoms according to MONICA criteria were common in both men and women, both with and without diabetes, and no differences between the groups were found. Study II showed that more patients with diabetes had pre-hospital delay times of ≥ 2 h compared to patients without diabetes. In Study III, chest pain was the most common self-reported MI symptom in patients with and without diabetes and there were no differences between the groups. Shoulder pain/discomfort, shortness of breath and tiredness were more common in patients with diabetes whereas cold sweat was less common compared to patients without diabetes. Less than 40 % of patients with diabetes called the emergency medical services (EMS) as their first medical contact (FMC) and about 60 % initially contacted a spouse after symptom onset. Patients with diabetes reported longer patient delay than patients without diabetes, but after age and gender adjustments the results were not significant. Pain, pressure or discomfort in the stomach, anxiety, symptoms that come and go and thoughts that the symptoms would disappear were associated with longer patient delay in patients with diabetes. In study IV, the analysis revealed the core category “Becoming ready to act” and the categories perceiving symptoms, becoming aware of illness, feeling endangered, and acting on illness experience. Patients with diabetes described a variety of different MI symptoms, the onsets of MI varied and it was sometimes difficult to interpret symptoms as related to MI. The decision to seek medical care for MI was complex with several barriers for timely care seeking. Conclusion: Chest pain was common in patients with diabetes and in contrast to our hypothesis chest pain was equally common in both patients with and without diabetes. There were more similarities than differences in MI symptoms between patients with and without diabetes. However, patients with diabetes were more likely to have pre-hospital delay for 2 hours or more compared to those without diabetes and there seems to be an underutilization of the use of emergency medical services as first medical contact. The process to seek care for MI was complex, initiated by perceiving symptoms, followed by illness awareness, feelings of being endangered and finally acting on the illness experience.
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| 4. |
- 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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| 5. |
- Israelsson, Johan, 1970-
(författare)
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Health-related quality of life after cardiac arrest
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Cardiac arrest is a major health problem worldwide. For many of the afflicted, cardiac arrest is the natural end of life. For others, it is an unexpected event suddenly striking in the middle of life. During the last decades, major efforts in treatment have contributed to more people surviving their cardiac arrest. However, previous research has mainly focused on survival, while the knowledge about health-related quality of life in survivors is sparse. Hence, there is a need for more research in order to extend the knowledge about the living situations among survivors and their spouses. For example, factors associated with health-related quality of life are not sufficiently investigated. Knowledge about such factors is important in order to develop interventions and to be able to improve post cardiac arrest care. In addition, existing research shows incongruent results concerning differences in characteristics and survival between men and women. In order to provide equitable care between sexes, further studies are warranted. Aim: The overall aim of this thesis was to increase the knowledge of survival and health-related quality of life among people suffering cardiac arrest with focus on sex and other related factors. The specific aims were: to describe in-hospital cardiac arrest events with regard to sex and investigate if sex is associated with survival after controlling for known predictors and interaction effects (study I), to describe health status and psychological distress among in-hospital cardiac arrest survivors in relation to sex (study II), to investigate factors associated with health-related quality of life among cardiac arrest survivors treated with an implantable cardioverter defibrillator in relation to sex, and to compare their health-related quality of life with a general population, (study III) and to investigate if type D personality and perceived control among cardiac arrest survivors and their spouses were associated with their own and their partners’ health-related quality of life (study IV). Methods: The general design in all studies (I-IV) was quantitative, cross-sectional and correlational. This thesis is based on four different data collections. Data was systematically collected using national quality registries (I and II) or by sending questionnaires to survivors (III and IV) and their spouses (IV), treated at several different hospitals in Sweden. The sample size varied between 126 and 990 across the studies. The outcomes and explanatory study variables were chosen with respect to Wilson and Cleary’s conceptual model of health-related quality of life. The main outcome variables were survival after resuscitation, survival at hospital discharge, survival at 30 days post cardiac arrest (I), and health-related quality of life measured by the Hospital Anxiety and Depression Scale (II and III) and the EuroQol-5 dimensions (II-IV). In this thesis descriptive and inferential statistics were applied. The main statistics consisted of logistic and linear regression analyses, and structural equation modelling. Results: Male sex was associated with a better chance of survival to hospital discharge, but no associations between sex and survival after resuscitation or at 30 days were identified. More men than women received resuscitation attempts when suffering an in-hospital cardiac arrest (study I). Health-related quality of life among most cardiac arrest survivors was good (II-IV), even when compared to a general population (III). However, a significant proportion reported low health status and symptoms of anxiety and depression (II and III). Women reported worse health-related quality of life compared to men, and female sex was associated with poorer health-related quality of life in the multiple regression models (II and III). Several additional factors were identified to be associated with poorer health-related quality of life: being unemployed, having a type D personality, perceiving less control, suffering from more comorbidities and suffering from more ICD-related concerns (III). In addition, older age was associated with poorer (EQ VAS) or better (HADS Anxiety) health-related quality of life, depending of outcome measure (II). Moreover, perceived control and type D personality among the survivors were associated with health-related quality of life among their spouses, but not vice versa. Conclusions: Although, sex does not appear to be an important predictor for survival, the difference between men and women regarding the proportion of resuscitation attempts should be further investigated. The majority of survivors and their spouses report good health-related quality of life similar to general populations. However, a substantial proportion suffer from health problems. Since women in general report worse health-related quality of life compared to men a higher proportion of women may be in need of support. Several factors associated with worse health-related quality of life were identified and might be used during follow-up and rehabilitation. For example, identifying type D personality might be important when screening patients at risk for health problems. Perceiving more control could be targeted by health-supportive interventions, for example person-centered care. Healthcare professionals should make efforts to identify survivors at risk of poor health-related quality of life and offer individualized support when needed. Characteristics among survivors were associated with health-related quality of life in their spouses. Including spouses in follow-up care is therefore important. Wilson and Cleary’s conceptual model for health-related quality of life appears to be applicable for choosing outcomes in cardiac arrest research and might be helpful when designing interventions to improve post cardiac arrest care.
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| 6. |
- Allemann, Hanna, 1979-
(författare)
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Online support for informal carers of persons with heart failure : Focus on perceptions, development and experiences
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Heart failure (HF) is a common condition, and its prevalence is expected to increase. The illness trajectory is unpredictable, and its effects will include a potential impact on informal carers, i.e., family, friends, and significant others. Sometimes these persons are affected by the help and care they provide in such a way that they might themselves need support. However, they may be unrecognised in their endeavours, and might also experience a lack of support, especially from healthcare. Online solutions are considered to have the potential to provide accessible support to carers that is also anticipated to be cost-effective. Aim: This thesis focuses on support to informal carers to persons living with HF, but also take the viewpoint of the person with HF by exploring social supports associations with their health and well-being. The overall aim was to explore perceptions, development, and experiences of online support for informal carers. Method: This thesis comprises four studies. Study I had a cross-sectional design using self-reported data and data from the Swedish Pace-maker and ICD Registry. Data from 1,550 persons with HF who were living with an ICD and who had complete data on the outcome variable were utilised for both descriptive analysis and logistic regression. The outcome variable, perceived social support, was measured using the questionnaire Multidimensional Scale of Perceived Social Support (MSPSS), which includes measuring support from significant others, family, and friends. The logistic regression was conducted to compare those dichotomised as having low/medium perceived social support to those having high levels of support. Study II had a qualitative design, and data were collected through 8 focus groups with 23 informal carers of persons with HF to explore their perceptions of how online solutions could be of value for support. Data were analysed using qualitative content analysis. Study III had a descriptive design. It describes the co-design process of an online support pro-gramme for carers through three phases. In phase I, topics and content that reflected carers needs and preferences were identified. In phase II, the content for the support programme was developed and through phase III the content was refined and finalised. Informal carers participated in every phase, and the co-design process also involved professionals with expertise in, for example, HF and caregiving, for the development of content. It was an iterative process, moving back and forth between phases, and the re-search group acted as coordinators and ensured that carers’ voices were kept central to the process. Study IV had a qualitative design, and data were collected through individual semi-structured interviews with 15 carers. Interviews were analysed using qualitative content analysis. The study focused on informal carers' experiences of online, co-designed support pro-gramme while being participants in a randomised controlled trial (RCT) that has the aim of studying the effects of engaging with the programme. Results: The findings show that one in five diagnosed with HF and living with an ICD reported low/medium levels of social support and that these persons had higher odds of negative psychosocial outcomes. This un-derscores the value and importance of support from informal carers for the well-being of those with HF. The thesis focused on perceptions, development, and experiences of online support for informal carers. The findings suggest that a co-designed support programme has the potential to be usable and useful for carers considering the online format and its content. It may provide insights, preparedness, and validation in relation to being a carer of a person with HF. However, carers may have an ‘ambiguous stance’ towards the online format and going online for support may not be the preferred form of support for all carers. Conclusion: A co-designed online support programme, when built on a trusted platform within a healthcare context, may be considered both usable and useful for carers. The online format and content also provide the potential to offer timely and adaptable support. The content, developed in a collaboration between carers and professionals, offers evidence-based, relevant information, thereby possibly avoiding seeming impersonal, which can also be beneficial. The programme acknowledges the intertwined lives of carers and those with HF, and its content reflects this, potentially also enhancing its perception as usable and useful for carers. Still, the potential of the support programme depends on carers being aware of its existence, or being made aware, and can further recognise its value. The support programme is considered to have the capacity to be relevant for a broad group of carers, and therefore efforts may be of importance to ensure it is accessed and utilised. However, it is also important to take into account that not everyone may be willing or able to go online for support, or may wish to stay in a caring role. Healthcare also needs to recognise this when offering support to carers and the online support may be regarded an option among several.
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| 7. |
- Andreae, Christina, 1969-
(författare)
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Appetite in patients with heart failure : Assessment, prevalence and related factors
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Appetite is an important component in nutrition for maintaining the food intake needed by the body. Decreased appetite is a common clinical problem in patients with heart failure. It has a negative impact on food intake and possibly on malnutrition and health outcomes. There is a lack of evidence on how to assess appetite in heart failure. Furthermore, there are knowledge gaps about factors associated with appetite and which role appetite plays for health status in heart failure. Aim: The overall aim of the thesis was to investigate appetite in patients with heart failure. Four studies were conducted with the goal to evaluate the psychometric properties of the Council on Nutrition Appetite Questionnaire (CNAQ) (I) and to explore the prevalence of decreased appetite and related factors associated with appetite in patients with heart failure (II-IV). Methods: A multicenter study was conducted in three outpatient heart failure clinics in the center of Sweden during 2009-2012. Data were collected through a baseline measurement (I-IV) and an 18-month follow-up (IV). The first study was a psychometric evaluation study (I), while the other studies had an observational cross-sectional design (II-III) and an observational prospective design (IV). One hundred and eighty-six patients diagnosed with heart failure and experiencing heart failure symptoms participated at baseline. At the 18-month follow-up study (IV), one hundred and sixteen participants from the baseline participated. Data were collected from medical records (pharmacological treatment, comorbidity, left ventricle ejection fraction, time of diagnosis), self-reported questionnaires (demographic background data, appetite, symptoms of depression, health status, sleep, self-reported physical activity), objective measurements (anthropometric assessment of body size, blood samples, six minutes’ walk test, and physical activity measured with an actigraph) and clinical assessment (New York Heart Association (NYHA) functional classification, and cognitive assessment). The main outcome variables included appetite (I, II and IV) and health status (III). Descriptive and inferential statistics were used in the studies (I-IV). Results: The majority of the participants had moderate heart failure symptoms, i.e., NYHA class II (n=114, 61%). Most of the participants were men (n=130, 70%). Mean age was 70,7 years, (SD=11,0), and mean BMI was 28.7 (SD=5.3). The CNAQ showed acceptable psychometric properties for assessing appetite in patients with heart failure (I). This thesis shows that 38% of the participants experienced an appetite level that put them at risk of weight loss (I). It was shown that factors such as biological, medical, psychological (II) and physical activity/exercise capacity (IV) are associated with appetite. Also, appetite was associated with impaired health status. However, this association was found to be moderated by symptoms of depression (III). Neither appetite nor physical activity changed during the 18-month follow-up (IV). Conclusion: Decreased appetite is a serious phenomenon that needs attention in the care of patients with heart failure. Health care professionals can now use a validated and simple appetite instrument to assess appetite in heart failure. In addition, attention should be paid to elderly patients and those who have symptoms of depression, sleep problems, impaired cognitive function and impaired physical activity, as well as to patients on suboptimal medical treatment. Higher appetite was shown to contribute to a better health status, but this was only evident in patients without symptoms of depression. Therefore, special attention should be paid to symptoms of depression, as this risk factor affected the association between appetite and health status. This thesis enhances the understanding of the magnitude of the problem with decreased appetite in heart failure both in numbers and factors. New priorities in nutrition care and new ideas can be established, both in practice and in research, in order to improve a nutrition care that is vital for patients with heart failure.
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| 8. |
- Näsström, Lena, 1967-
(författare)
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Participation in heart failure home-care : Patients’ and partners’ perspectives
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Patient participation is important for improving outcomes and respecting selfdetermination and legal aspects in care. Heart failure is a chronic condition that puts high demands on self-care and patient participation. Patients often need advanced care due to deterioration of their heart failure symptoms, and one option is to provide care as home-care. There is limited knowledge of how patients with heart failure and their partners view participation in home-care.Aim: The overall aim of this thesis was to describe different perspectives of participation in structured heart failure home-care among patients with heart failure and their partners.Methods: All patients in this thesis received structured heart failure home-care, according to a model aiming to facilitate care, where safety, participation, and gaining knowledge about the illness and treatment, are in focus. Study I had a prospective pre-post longitudinal design including 100 patients with heart failure receiving home-care. Data was collected by selfadministered questionnaires. Study II had a descriptive design. Nineteen patients receiving home-care were interviewed, and data was analysed using qualitative content analysis. Study III had a descriptive and explorative design. Data was collected by video-recorded observations of 19 home visits and analysed by qualitative content analysis. Study IV had a parallel convergent mixed-method design including 15 partners of patients receiving structured home-care. Data was collected by interviews and self-administered questionnaires. Datasets were first analysed separately and then together.Results: Better self-care behaviour was significantly associated with all measured aspects of participation. Participation by received information increased significantly during the 12-month follow-up (I). Patients’ descriptions of participation included communication between patients and health care professionals, access to care, active involvement in care, a trustful relation with health care professionals, and options for decision-making(II). Observed care encounters revealed that participation was made possible by; (i) interaction, including exchange of care-related information, care-related reasoning, and collaboration, (ii) an enabling approach, including the patient expresses own wishes and shows an active interest, and the nurse is committed and invites to a dialogue (III). Partners scored fairly positive for their participation in care and they performed different levels of caregiving tasks. Descriptions of participation included; adapting to the caring needs and illness trajectory, mastering caregiving demands, interacting with care providers, and gaining knowledge to comprehend the health situation. The mixed-method results showed both convergent results and expanded knowledge (IV).Conclusions: Structured heart failure home-care facilitated participation both for patients and their partners. Patient participation with regard to received information improved significantly after receiving home-care. Aspects of patient participation were consistently associated with better self-care behaviour. Patients’ and partners’ descriptions revealed many aspects of participation, and observed home visits revealed how interaction and an enabling approach underpinned participation.
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| 9. |
- Waldemar, Annette, 1969-
(författare)
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In-hospital family-witnessed adult resuscitation : Perspectives of patients, families and healthcare professionals
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background Several international organizations recommend family-witnessed resuscitation (FWR) in hospitals, which means that the family should be offered to be present during resuscitation. These recommendations are based on research that shows that it is usually beneficial for the family to be present. The family can see that everything was done for the patient, they can say goodbye, they acknowledge that the patient passed away and the grieving process is facilitated. However, research has yet to examine how FWR affects the patient and family members who were present during the cardiac arrest and what it is like to live on with the shared experience. Healthcare professionals (HCPs) in general are sceptical of FWR, and current guidelines that recommend FWR have not made a significant im-pact in healthcare. HCPs believe that FWR could worsen the outcome for the patient and that the family could be psychologically damaged by being present during resuscitation.HCPs also express uncertainty about how to act during FWR, because they have not received education or training about FWR. There is a need for research concerning the outcomes of FWR in hospitalized adult patients. Research on the experiences, attitudes, and self-confidence of HCPs in Sweden in relation to FWR, as well as the shared experiences of patients and families, is lacking. There is also lack of research exploring whether an educational intervention can have a positive impact on attitudes and self-confidence among HCPs. Overall Aim The overall aim of this thesis was to describe the prevalence, processes, and outcomes of FWR; explore experiences and attitudes towards FWR among patients, families, and HCPs; and to further develop and test an educational intervention addressing HCP. Methods This thesis includes four studies, where the first study used a cross-sectional design (I), Study II was a retrospective observational cohort study, Study III was a qualitative study, and Study IV used a quasi-experimental design. The sample size ranged between 15-4846 participants across the studies. Data was collected through web surveys (I, IV), registers (II), and narrative face-to-face interviews (III). Descriptive and correlational statis-tics were used in the quantitative studies (I-II, IV) and interpretative phenomenological analysis (IPA) in the qualitative study (III). A 10-minute educational video was developed, pilot tested, and used as intervention in Study IV. The video was based on previous research covering the prevalence and outcome of FWR, attitudes among HCPs, patient and family experiences, and FWR guidelines. Results It was significantly more common that a family member was on site if the cardiac arrest occurred in acute settings such as emergency departments and intensive care units than in hospital wards (44% vs. 26%, p<0.001). In total, 395 patients (12 %) had family on site when the cardiac arrest occurred, in 186 of these cardiac arrests the family chose to witness resuscitation. (II). The mean time from initiation to termination of resuscitation was significantly longer if a family member was present (17.7 vs. 20.7 minutes, p=0.020) (II). There were no significant differences in survival rate between FWR and non-FWR, neither immediately after resuscitation (57% vs. 53%, p=0.291) nor in 30-day survival (35% vs. 29%, p=0.086) (II). HCPs reported a wide range of experiences regarding FWR (I, IV). More nurses (70%) than physicians (49%) expressed positive experiences in Study I, while in Study IV, the proportions were the opposite, with 52% of physicians and 33% of nurses reporting positive experiences. Regarding attitudes, the results from Study IV show a more positive attitude towards offering the family the opportunity to be with the patient during CPR compared to Study I. In Study IV, 77.1% of nurses and 58.1% of physicians reported a positive attitude towards FWR, while in Study I, 58.7% of nurses and 29.2% of physicians were positive. Performing defibrillation, administering drug therapies, and providing chest compressions during FWR were not considered to be a problem for either physicians or nurses. Nevertheless, being able to identify family members who demonstrate appropriate coping behaviours was more difficult, and 27% of nurses and 37% of physicians reported that they had no confidence in performing this task. Furthermore, 52.7% of nurses and 69.4% of physicians were not comfortable encouraging family members to talk to the patient during resuscitation (IV). In Study I, none of the included hospitals reported having local guidelines about FWR, while 18.6% reported that they had guidelines seven years later when Study IV was per-formed. The results suggest that the educational intervention had a positive influence on HCPs’ self-confidence during FWR (3.83±0.70 to 4.02±0.70, p<0.001) and their attitudes towards FWR (3.38±0.49 to 3.62±0.48, p<0.001) (IV). Patients and families describe powerlessness in the face of life's fragility, but also faith in life after experiencing and surviving a sudden cardiac arrest together. Even though the participants felt exposed and vulnerable in the care relationship and lacked a sense of control and continuity, they had hope and re-evaluated life, lived in the moment and saw the value in everyday life. The love they felt for people who were important to them and the gratitude for life increased after the cardiac arrest. The desire for freedom and independence also increased (III). Conclusion Surviving as well as witnessing an in-hospital cardiac arrest is a critical event making patients and family members vulnerable. To meet their needs, HCPs should routinely invite the family to witness resuscitation if it is deemed to be safe. HCPs need to show compassion and evaluate how family members are coping during the process and provide support and in-formation during and after resuscitation. Processes and outcomes do not seem to be negatively affected by FWR, even though there is some resistance to FWR among HCPs. These obstacles must be considered when planning for the implementation of FWR in daily practice. A short online educational video can be a way to improve the self-confidence and attitudes towards FWR among HCPs. This will likely result in increased compliance with national and local guidelines that recommend FWR.
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- Ericsson, Maria, 1970-
(författare)
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No time to waste : Pre-hospital actions and time delays in patients with ST elevation myocardial infarction – temporal trends and prognostic impact on short- and long-term survival
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: In ST-elevation myocardial infarction (STEMI) patients, a rapid diagnosis is imperative to reduce total ischaemic time minimizing risk for heart failure, serious arrhythmias, or death. Prehospital context is complex, and the patient delay constitute major part of the pre-hospital phase. Patient delay has been prone hard to impact but the system delay has had major transformation during the years. Aim: The overall aim was to explore pre-hospital actions and time delays in STEMI patients, investigating temporal trends and estimate prognostic impact on short- and long-term survival. Methods: Study I, was a multicentre survey study, exploring decisions, and actions in relation to the choice of first medical contact (FMC). Study II was a sub-study to the multicentre survey, exploring the interaction between tele nurses and callers in authentic calls when the caller with an evolving myocardial infarction (MI) chose to call Swedish health care direct (SHD) as FMC. Study III, was based on the same database as study I, exploring early (< 20 minutes) and late (> 90 minutes) response from symptom onset in STEMI patients. Study IV, was based on SWEDEHEART-registry, investigating temporal trends in pre-specified risk groups for pro-longed pre-hospital delay times (PHDT), estimating cumulative survival in short and long term stratified in six different PHDT groups. Results: Study I, only half of the patients’ contacted emergency medical services (EMS) as their FMC. Choice of FMC prolonged time to diagnosis in relation of calling EMS. Choosing SHD pro-longed delay to diagnosis with 38 minutes. Study II, four interactions were found between tele-nurses and callers, reasoning, distinct, irrational, and indecisive, and type of interaction could lead or mislead the call moving progressively forward or not. Study III, bystanders calling EMS, men, intensive and alarming symptoms such as dyspnoea and weakness and to interpret symptoms attributed from the heart was associated with a rapid action calling an ambulance within 20 minutes, which was performed by one of five patients. Study IV, trend curves for median PHDT was hump shaped for the 20 years studied. Women, older age, and patients with diabetes had consistent pro-longed PHDT, except for the oldest patients (> 80 years). PHDT was an independent risk for short- and long-term survival. Patients with the shortest PHDT 0-1 hour had the highest mortality up to five days. In five-year follow up this group accompanied with the group within 1-2 hours had highest estimated survival. Conclusion: Pre-hospital delay is an independent predictor of short- and long-term survival. To interpret symptom correctly and knowledge in how to act, calling an ambulance rapidly, impact time to diagnosis and diminish time delays. Pre-hospital delay merits further attention regarding future interventions.
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