| 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. |
- Sheng, Nongfei, 1988-
(författare)
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Revisiting dental caries as an immunodeficiency disorder
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Worldwide, dental caries is the major human chronic disease, with billions of people affected in terms of life quality impairment and high society costs that consumes 5-10% of the global healthcare budget. In Western countries dental caries has declined dramatically, with a trajectory of 15% high-risk individuals with recurrent caries and a non-responder behavior to standard prevention. This dissertation work focuses on revisiting the primary causes of caries development by exploring human and Streptococcus mutans genetic variation in a prospective case-control sample of 452 Swedish adolescents followed from 12 and 17 years of age.Genetic variation of PRH1 and PRH2, encoding acidic proline-rich protein receptors for indigenous oral streptococci and actinomycetes, specified high (P4a), moderate (P6) and low (P1) caries phenotypes of different risk and causal profiles (Paper I). Susceptible individuals thus classified into the immunodeficiency caries type (P4a) or the lifestyle caries type (P1) that accounted for naturally resistant individuals. Orthodontic treatment during adolescence exerted a further negative load that resulted in an even bigger difference in caries progression between P4a and P1 individuals. Importantly, immunodeficiency P4a individuals were identified as risk individuals at the clinic and therefore given extra fluoride.Adhesin gene variation in S. mutans specified SpaP A/B/C and Cnm/Cbm adhesion types that matched individual caries progression (Paper II). The saliva/DMBT1 binding avidity of high cariogenicity SpaP and Cnm but not of low cariogenicity SpaP A types correlated positively with the caries activity of the individual strain donor. SpaP-guided MLST typing also revealed SpaP A/B/C biotypes with high SpaP B and low SpaP A cariogenicity lineages that besides adhesion differed in acid production and acid tolerance properties. The SpaP A/B/C receptor-binding V-regions had markedly different structures. In paper III, we found unstable residency of a mixed and fluctuating SpaP A/B/C adhesion mode, a high cariogenicity SpaP B-1 subtype and Cnm adhesin expression and glycosylation to contribute to mono-microbial caries progression in naturally resistant low caries P1 phenotypes. By, contrast, moderate- and high-caries P6 and P4a phenotypes contributed to poly- and meta-microbial caries progression. In addition, the S. mutans adhesion types showed specificity (tropism) for individual hosts and plausible family distribution patterns.DMBT1 protein size isoforms I-III predicted caries progression but differently in the PRH1/PRH2 genetic background and influenced the infection profile of S. mutans adhesion and virulence types (Paper IV). Caries progression increased as DMBT1 isoform size decreased in the order of isoform I > II > III, suggesting that loss of the large isoform III glycotype may impair immunity. The finding that DMBT1 isoform variation did not add predictive power to the P4a+ but to P4a- phenotypes allowed a novel sick and health classification system.In conclusion, PRH1, PRH2 may represent a pattern recognition and immunity pathway for tooth homeostasis and formation of the indigenous flora on teeth. It can predict prospective caries risk and might be implemented in caries prevention based on genetic risk and cause at the clinical level. DMBT1 appears as an evolutionary different but intertwined immunity pathway for surveillance of infectious agents in general at teeth and mucosal surfaces. The S. mutans organism is heterogenous with biotypes and lineages that match individual caries development. Narrowing both S. mutans and PRH1, PRH2 phenotypes suggest a mono- (P1), poly- (P6) and even meta- (P4a) microbial characters of dental caries.
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| 7. |
- 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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| 8. |
- 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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| 9. |
- Gusdal, Annelie K, 1963-
(författare)
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Family caregiving for persons with heart failure : Perspectives of family caregivers, persons with heart failure and registered nurses
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Heart failure is a growing public health problem associated with significant morbidity and mortality. Family support positively affects outcomes for the person with heart failure while also leading to caregiver burden. Registered nurses have a key role in supporting and meeting the needs of family caregivers.The overall aim was to explore the situation and needs of family caregivers to a person with heart failure, and explore requisites and ways of supporting and involving family caregivers in heart failure nursing care.Two interview studies, one web survey study and one intervention study were conducted between 2012 and 2017. A total of 22 family caregivers, eight persons with heart failure and 331 registered nurses participated in the studies.Family caregivers' daily life was characterized by worry, uncertainty and relational incongruence but salutogenic behaviours restored new strength and motivation to care. Family caregivers experienced that their caregiving was taken for granted by health care professionals. Family caregivers expressed a need for a permanent health care contact and more involvement in the planning and implementation of their near one’s health care together with health care professionals. Registered nurses acknowledged family caregivers’ burden, lack of knowledge and relational incongruence. A registered nurse was suggested as a permanent health care contact to improve continuity and security. Registered nurses neither acknowledged family caregivers as a resource nor their need for involvement. Registered nurses working in primary health care centres, in nurse-led heart failure clinics, with district nurse specialization, with education in cardiac nursing care held the most supportive attitudes toward family involvement in heart failure nursing care. Family health conversations via telephone in nurse-led heart failure clinics were found to successfully support and involve families. The conversations enhanced nurse-family relationship and relations within the family. They also provided registered nurses with new, relevant knowledge and understanding about the family as a whole. Family health conversations via telephone were feasible to both families and registered nurses, although fewer and shorter conversations were preferred by registered nurses.This thesis highlights the divergence between family caregivers’ experiences and needs, and registered nurses’ perceptions about family caregivers’ situation and attitudes toward the importance of family involvement. It adds to the knowledge on the importance to acknowledge family caregivers as a resource and to support and involve them in heart failure nursing care. One feasible and successful way is to conduct Family health conversations via telephone in nurse-led heart failure clinics.
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| 10. |
- Henriksson, Catrin, 1961-
(författare)
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Coronary Heart Disease and Early Decision Making, from Symptoms to Seeking Care : Studies with Focus on Pre-hospital Delay in Acute Myocardial Infarction Patients
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Despite several investigations and interventions aimed at decreasing the time from symptom onset to medical care seeking in acute myocardial infarction patients, the delay time is still too long for best treatment outcomes. In this thesis, investigations aimed at improving our understanding of the factors influencing delay time are evaluated, as well as attitudes to medical care seeking in patients, relatives and the general public. Additionally, an evaluation was performed to examine whether health-related quality of life had any influence on delay time and re-admissions. Participating patients, relatives and representatives of the general public were generally knowledgeable about acute myocardial infarction (AMI) and its symptomatology. The majority of participants knew about the importance of receiving fast treatment when an AMI occurs. Despite people’s knowledge, several patients and relatives felt uncertain of symptom origin and how to act at symptom onset. Patients commonly consulted an additional person when symptoms did not disappear. However, people appeared to act more appropriately if someone else had chest pain compared to self-experienced symptoms. In patients who had suffered from more than one AMI, poor total health status increased the risk of delaying for more than two hours, but no independent association was found between total health status and re-admissions within the first year post-AMI.
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