| 1. |
- 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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| 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. |
- Andréasson, Frida, et al.
(författare)
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Lifeworld in co-designing with informal carers
- 2019
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Ingår i: Journal of Enabling Technologies. - : Emerald Group Publishing Limited. - 2398-6263 .- 2398-6271. ; 13:1, s. 29-39
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Tidskriftsartikel (refereegranskat)abstract
- Purpose – The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.Design/methodology/approach – This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.Findings – Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.Originality/value – Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.
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| 4. |
- Hjelmfors, Lisa, et al.
(författare)
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I was told that I would not die from heart failure
- 2018
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Ingår i: Applied Nursing Research. - : W B SAUNDERS CO-ELSEVIER INC. - 0897-1897 .- 1532-8201. ; 41, s. 41-45
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Tidskriftsartikel (refereegranskat)abstract
- Aim and objectives: To describe patients experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis. Background: Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs. Methods: An inductive and exploratory design was used. A total of 24 patients (75% men, 52-87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data. Findings: Two overarching themes, "The message sent" and "Hoping for the best or preparing for the worst", each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences. Conclusion: This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.
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| 5. |
- Hjelmfors, Lisa, et al.
(författare)
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Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care
- 2018
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. Methods: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. Results: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. Conclusions: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.
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| 7. |
- Lundgren, Anna, 1974, et al.
(författare)
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Mucosal FOXP3-expressing CD4+ CD25high regulatory T cells in Helicobacter pylori-infected patients
- 2005
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Ingår i: Infect Immun. ; 73:1, s. 523-31
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Tidskriftsartikel (refereegranskat)abstract
- Helicobacter pylori chronically colonizes the stomach and duodenum and causes peptic ulcers or gastric adenocarcinoma in 10 to 20% of infected individuals. We hypothesize that the inability of patients to clear H. pylori infections is a consequence of active suppression of the immune response. Here we show that H. pylori-infected individuals have increased frequencies of CD4(+) CD25(high) T cells in both the stomach and duodenal mucosa compared to uninfected controls. These cells have the phenotype of regulatory T cells, as they express FOXP3, a key gene for the development and function of regulatory T cells, as well as high levels of the cytotoxic T lymphocyte-associated antigen 4 (CTLA-4) protein. In contrast, mucosal CD4(+) CD25(low) and CD4(+) CD25(-) cells express little FOXP3 mRNA and low levels of the CTLA-4 protein. Mucosal CD4(+) CD25(high) T cells are present in individuals with asymptomatic H. pylori infections as well as in duodenal ulcer patients. The frequencies of CD4(+) CD25(high) cells are also increased in the stomachs of H. pylori-infected patients with gastric adenocarcinoma, particularly in cancer-affected tissues. These findings suggest that regulatory T cells may suppress mucosal immune responses and thereby contribute to the persistence of H. pylori infections.
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| 8. |
- Näsström, Lena, 1967-, et al.
(författare)
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Exploring partners' perspectives on participation in heart failure home care : a mixed-method design
- 2017
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Ingår i: Journal of Advanced Nursing. - : Blackwell Munksgaard. - 0309-2402 .- 1365-2648. ; 73:5, s. 1208-1219
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Tidskriftsartikel (refereegranskat)abstract
- Aim. To describe the partners' perspectives on participation in the care for patients with heart failure receiving home care. Background. Partners are often involved in care of patients with heart failure and have an important role in improving patients' well-being and self-care. Partners have described both negative and positive experiences of involvement, but knowledge of how partners of patients with heart failure view participation in care when the patient receives home care is lacking. Design. A convergent parallel mixed-method design was used, including data from interviews and questionnaires. Methods. A purposeful sample of 15 partners was used. Data collection lasted between February 2010 - December 2011. Interviews were analysed with content analysis and data from questionnaires (participation, caregiving, health-related quality of life, depressive symptoms) were analysed statistically. Finally, results were merged, interpreted and labelled as comparable and convergent or as being inconsistent. Results. Partners were satisfied with most aspects of participation, information and contact. Qualitative findings revealed four different aspects of participation: adapting to the caring needs and illness trajectory, coping with caregiving demands, interacting with healthcare providers and need for knowledge to comprehend the health situation. Results showed confirmatory results that were convergent and expanded knowledge that gave a broader understanding of partner participation in this context. Conclusion. The results revealed different levels of partner participation. Heart failure home care included good opportunities for both participation and contact during home visits, necessary to meet partners' ongoing need for information to comprehend the situation.
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| 9. |
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| 10. |
- 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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