| 1. |
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| 2. |
- Andreae, Christina, 1969-
(author)
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Appetite in patients with heart failure : Assessment, prevalence and related factors
- 2018
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Doctoral thesis (other academic/artistic)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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| 3. |
- Andréasson, Frida
(author)
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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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Doctoral thesis (other academic/artistic)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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| 4. |
- Andréasson, Frida, et al.
(author)
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Lifeworld in co-designing with informal carers
- 2019
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In: Journal of Enabling Technologies. - : Emerald Group Publishing Limited. - 2398-6263 .- 2398-6271. ; 13:1, s. 29-39
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Journal article (peer-reviewed)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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| 5. |
- Hjelmfors, Lisa, et al.
(author)
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I was told that I would not die from heart failure
- 2018
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In: Applied Nursing Research. - : W B SAUNDERS CO-ELSEVIER INC. - 0897-1897 .- 1532-8201. ; 41, s. 41-45
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Journal article (peer-reviewed)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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| 6. |
- Hjelmfors, Lisa, et al.
(author)
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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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In: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17
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Journal article (peer-reviewed)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. |
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| 8. |
- Lundgren, Anna, 1974, et al.
(author)
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Mucosal FOXP3-expressing CD4+ CD25high regulatory T cells in Helicobacter pylori-infected patients
- 2005
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In: Infect Immun. ; 73:1, s. 523-31
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Journal article (peer-reviewed)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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| 9. |
- Näsström, Lena, 1967-, et al.
(author)
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Exploring partners' perspectives on participation in heart failure home care : a mixed-method design
- 2017
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In: Journal of Advanced Nursing. - : Blackwell Munksgaard. - 0309-2402 .- 1365-2648. ; 73:5, s. 1208-1219
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Journal article (peer-reviewed)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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| 10. |
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| 11. |
- Säfström, Emma, 1980-
(author)
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Continuity of care after hospitalization due to cardiac conditions : Patients' perceptions, validity and reliability of a measure, and associations with outcomes
- 2023
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Doctoral thesis (other academic/artistic)abstract
- Background: Cardiac conditions are a common cause of hospitalization worldwide. The need for healthcare continues after hospital discharge and most commonly includes follow-up within primary healthcare centers or specialized outpatient cardiology clinics. This transition from the hospital to outpatient or primary-care settings jeopardizes the continuity of care. Continuity of care refers to the coordination of healthcare between different healthcare personnel and settings over time. There are three types of continuity of care: informational, relational, and management continuity. Continuity of care is essential after hospitalization due to cardiac conditions, and is associated with several positive clinical outcomes; however, available patient-reported measures of continuity of care during the posthospital period needs further validation. Accurate measurements would improve our ability to evaluate implementations designed to enhance continuity of care. Moreover, there is a lack of knowledge about whether the associations between continuity of care, perceived control, and self-care could explain variations in health-related quality of life and hospital readmissions in patients with cardiac conditions.Aim: The overall aim of this thesis was to contribute to improving care after hospitalization for patients with cardiac conditions by describing continuity of care from the patient’s perspective and increasing the understanding of how continuity of care can be measured and how it can influence patient outcomes.Method: All four studies had a cross-sectional design using a consecutive sampling procedure (I–IV). Study I was a single-center study and studies II–IV were multicenter studies. Data was collected using structured telephone interviews (I), questionnaires (II–IV), and review of medical charts (I–IV). The timescale for data collection ranged from one week (I) to six weeks after discharge (II–IV). The Patient Continuity of Care Questionnaire (PCCQ), a 27-item questionnaire to measure patients’ perceptions of continuity of care, was translated and culturally adapted to Swedish. The factor structure was reviewed (II), and a short version including 12 of the items was evaluated (III). A conceptual model was constructed to examine the associations between continuity of care, perceived control, self-care, health-related quality of life, and hospital readmissions (IV). The data was analyzed using descriptive and non-parametric statistics (I), confirmatory factor analysis, test-retest estimation (II), the Rasch measurement model (III), and structural equation modeling (SEM) (IV).Results: Patients in study I were hospitalized due to heart failure, and in study II–IV, patients hospitalized due to angina pectoris, atrial fibrillation, heart failure and myocardial infarction were included. Most patients received a written discharge summary. Despite this, many patients lacked knowledge about whom to contact regarding deterioration or questions after discharge. The patients described feeling unsafe and experienced a lack of clarity about their primary healthcare contact (I). The confirmatory factor analysis of the Swedish version of the PCCQ overall confirmed the sixfactor structure, but minor revisions were made to achieve a satisfactory model fit. The ordinal alpha for the subscales was satisfactory and ranged between 0.82 and 0.95 (II). In the 12-item short version (PCCQ-12) (III), two pairs of items showed signs of response dependence and the first two response options were disordered in all items. Apart from this, the PCCQ-12 was found to be a unidimensional questionnaire with sound psychometric properties and the ordinal alpha was 0.94. Patients most commonly reported lower levels of continuity of care on matters relating to management continuity after discharge. In particular, women, older patients, and those hospitalized due to angina pectoris reported lower levels of continuity. In study IV, the conceptual model suggested that patients who perceive higher levels of continuity of care also experience higher levels of perceived control and perform self-care to a greater extent, significantly improving their health-related quality of life and reducing the risk of hospital readmission. The association between continuity of care and self-care was mediated by perceived control.Conclusion: Patients’ perceptions of continuity of care after hospitalization due to cardiac conditions can be measured using the PCCQ. The longer, revised PCCQ can be used to evaluate the three types of continuity individually, and the PCCQ-12 can be used in a time-restricted setting or to reduce respondents’ burden. Even though most patients received a written discharge summary, this was not enough for them to perceive continuity of care after hospitalization. An area of concern is management continuity and elderly patients, women, and those hospitalized due to angina pectoris. Finally, according to the conceptual model, interventions aiming to improve health-related quality of life or reduce readmission should include actions to facilitate continuity of care.
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| 12. |
- Aamodt, Ina Thon, et al.
(author)
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Self-Care Monitoring of Heart Failure Symptoms and Lung Impedance at Home Following Hospital Discharge: Longitudinal Study
- 2020
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In: Journal of Medical Internet Research. - : JMIR PUBLICATIONS, INC. - 1438-8871. ; 22:1
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Journal article (peer-reviewed)abstract
- Background: Self-care is key to the daily management of chronic heart failure (HF). After discharge from hospital, patients may struggle to recognize and respond to worsening HF symptoms. Failure to monitor and respond to HF symptoms may lead to unnecessary hospitalizations. Objective: This study aimed to (1) determine the feasibility of lung impedance measurements and a symptom diary to monitor HF symptoms daily at home for 30 days following hospital discharge and (2) determine daily changes in HF symptoms of pulmonary edema, lung impedance measurements, and if self-care behavior improves over time when patients use these self-care monitoring tools. Methods: This study used a prospective longitudinal design including patients from cardiology wards in 2 university hospitals-one in Norway and one in Lithuania. Data on HF symptoms and pulmonary edema were collected from 10 participants (mean age 64.5 years; 90% (9/10) male) with severe HF (New York Heart Association classes III and IV) who were discharged home after being hospitalized for an HF condition. HF symptoms were self-reported using the Memorial Symptom Assessment Scale for Heart Failure. Pulmonary edema was measured by participants using a noninvasive lung impedance monitor, the Cardio Set Edema Guard Monitor. Informal caregivers aided the participants with the noninvasive measurements. Results: The prevalence and burden of shortness of breath varied from participants experiencing them daily to never, whereas lung impedance measurements varied for individual participants and the group participants, as a whole. Self-care behavior score improved significantly (P=.007) from a median of 56 (IQR range 22-75) at discharge to a median of 81 (IQR range 72-98) 30 days later. Conclusions: Noninvasive measurement of lung impedance daily and the use of a symptom diary were feasible at home for 30 days in HF patients. Self-care behavior significantly improved after 30 days of using a symptom diary and measuring lung impedance at home. Further research is needed to determine if daily self-care monitoring of HF signs and symptoms, combined with daily lung impedance measurements, may reduce hospital readmissions.
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| 13. |
- Aamodt, Ina Thon, et al.
(author)
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Tools to Support Self-Care Monitoring at Home: Perspectives of Patients with Heart Failure
- 2020
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In: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 17:23
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Journal article (peer-reviewed)abstract
- Self-care monitoring at home can be a challenge for patients with heart failure (HF). Tools that leverage information and communication technology (ICT), comprise medical devices, or have written material may support their efforts at home. The aim of this study was to describe HF patients experiences and their prioritization of tools that support, or could support, self-care monitoring at home. A descriptive qualitative design employing semi-structured interviews was used with HF patients living at home and attending an HF outpatient clinic in Norway. We used a deductive analysis approach, using the concept of self-care monitoring with ICT tools, paper-based tools, medical devices, and tools to consult with healthcare professionals (HCPs) as the categorization matrix. Nineteen HF patients with a mean age of 64 years participated. ICT tools are used by individual participants to identify changes in their HF symptoms, but are not available by healthcare services. Paper-based tools, medical devices, and face-to-face consultation with healthcare professionals are traditional tools that are available and used by individual participants. HF patients use traditional and ICT tools to support recognizing, identifying, and responding to HF symptoms at home, suggesting that they could be used if they are available and supplemented by in-person consultation with HCPs.
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| 14. |
- Aidemark, Jan, 1967-, et al.
(author)
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Challenges for heart failure patients’ self-care systems – analysis of patients’ needs
- 2014
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In: Procedia Technology. - : Elsevier. - 2212-0173. ; 16, s. 1256-1264, s. 1256-1264
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Journal article (peer-reviewed)abstract
- Self-care is important for heart failure patients. However, what are the views of patients on their situation when it comes to realizing self-care? The aim of the paper is to investigate the self-care needs of HF patients, by understanding the issues they embrace in their self-care processes. In this paper we make a review of 17 interviews and make a classification of what the needs are for possible information technology support systems. Based on the analysis of these interviews, we identify the diversity of needs in support of activities related to different background conditions and the dynamics of change of learning and changes in the heart failure condition. The contribution of the paper is a framework for understanding the diversity of needs and the specific situations of this group of patients.
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| 15. |
- Aidemark, Jan, 1967-, et al.
(author)
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Understanding Heart Failure Care as a Patient Learning Process
- 2013
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In: HCist'2013 - International Conference on Health and Social Care Information Systems and Technologies - leveraging health and social care through people, processes and information systems, to be held in Lisbon, Portugal, from 23 to 25 October, 2013.. - : Elsevier. ; 9, s. 930-939
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Conference paper (peer-reviewed)abstract
- The paper deals with the planning of eHealth systems in the area of chronic care from a patient-centred perspective. The particular area is heart failure (HF) and systems that support patients’ possibilities to be active learners during the care processes. A better understanding of this process is hoped to create a basis for the development of appropriate information systems or information technology (IS/IT) support of learning processes. The objective of this paper is the development of a better understanding of the challenges of chronic illness with special focus on HF. The results are presented as a planning framework that guides the choice and design of ICT-based support systems.
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| 16. |
- Aidemark, Jan, 1967-, et al.
(author)
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User involvement in the co-design of self-care support systems for heart failure patients
- 2015
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In: Procedia Computer Science. - : Elsevier BV. - 1877-0509. ; 64, s. 118-124, s. 118-124
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Journal article (peer-reviewed)abstract
- In this paper the nature of user involvement in a co-design process will be explored. The outlines of a research project aiming at developing support systems for self-care inpatients suffering from chronic heart failure will be presented. The project is planned to perform a co-design effort where users (patients and healthcare professionals) will be given the opportunity to influence the development of support systems. We will discuss a number of possibilities and challenges that lie in the design of this kind of project and also some findings from its early stages. This report presents the experiences of users’ input, which are discussed in the context of previous research on benefits of user contributions in systems development.
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| 17. |
- Allemann, Hanna, 1979-
(author)
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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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Doctoral thesis (other academic/artistic)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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| 18. |
- Allemann, Hanna, 1979-, et al.
(author)
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Perceived Social Support in Persons With Heart Failure Living With an Implantable Cardioverter Defibrillator : A Cross-sectional Explorative Study
- 2018
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In: Journal of Cardiovascular Nursing. - : Lippincott Williams & Wilkins. - 0889-4655 .- 1550-5049. ; 33:6, s. E1-E8
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Journal article (peer-reviewed)abstract
- BACKGROUND: The links between chronic illness, psychological well-being, and social support have previously been established. Social isolation and loneliness have shown an increased mortality risk for those with heart failure (HF). Increasingly more people with HF are living with an implantable cardioverter defibrillator (ICD), but only a few small-scale studies have focused on social support in this population.OBJECTIVE: The aim of this study was to explore factors related to perceived social support in a large cohort of individuals with HF living with an ICD.METHODS: All eligible adult ICD recipients in the Swedish ICD registry were invited to participate in this cross-sectional study. For this analysis, those with HF and complete data on perceived social support were included (N = 1550; age, 67.3 (SD, 9.8) years; 19.5% female).RESULTS: Most reported a high level of social support, but 18% did not. In logistic regression, living alone was the greatest predictor of low/medium support. Lower social support for those living alone was associated with poorer perceived health status, having symptoms of depression, and experiencing low perceived control. For those living with someone, lower support was associated with female gender, symptoms of depression and anxiety, and less control. Heart failure status and perceived symptom severity were not related to the outcome.CONCLUSION: One in five participants reported low/medium social support. Our study underlines the complex relationships between perceived social support, psychological well-being and perceived control over the heart condition. Multiple aspects need to be taken into account when developing interventions to provide psychosocial support and optimize outcomes in this patient group.
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| 19. |
- Andreae, Christina, 1969-, et al.
(author)
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Changes in Appetite During the Heart Failure Trajectory and Association With Fatigue, Depressive Symptoms, and Quality of Life
- 2021
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In: Journal of Cardiovascular Nursing. - : Lippincott Williams & Wilkins. - 0889-4655 .- 1550-5049. ; 36:6, s. 539-545
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Journal article (peer-reviewed)abstract
- BACKGROUND: Decreased appetite can contribute to malnutrition in patients with heart failure (HF). Little is known about the trajectory of appetite over time in patients with HF and the factors associated with decreased appetite after discharge from the hospital.OBJECTIVE: The aims of this study were to investigate changes in appetite over time and explore how fatigue, depressive symptoms, and quality of life are associated with decreased appetite.METHODS: Data from the multicenter randomized Coordinating study evaluating Outcomes of Advising and Counseling in Heart Failure were used. Logistic regression and mixed-effects logistic regression were used to investigate changes in appetite over time and to explore the relationship between appetite and fatigue, depressive symptoms, and quality of life.RESULTS: A total of 734 patients with HF (mean age, 69 years) were included. Decreased appetite was present at all follow-up measurements; however, decreased appetite was significantly lower at the 1-month (odds ratio [OR], 0.43; confidence interval [CI], 0.29-0.63), 6-month (OR, 0.31; CI, 0.20-0.47), 12-month (OR, 0.22; CI, 0.14-0.34), and 18-month (OR, 0.24; CI, 0.15-0.37) follow-ups compared with baseline. Decreased appetite was associated with fatigue (OR, 3.09; CI, 1.98-4.84), depressive symptoms (OR, 1.76; CI, 1.35-2.29), and low quality of life (OR, 1.01; CI, 1.01-1.02) across all measurement points adjusted for covariates.CONCLUSIONS: Appetite improved after discharge; however, at all time points, at least 22% of patients reported decreased appetite. Fatigue, depressive symptoms, and low quality of life are factors associated with decreased appetite. Decreased appetite is a long-standing problem in that it does not disappear spontaneously after an acute HF deterioration.
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| 20. |
- Andreae, Christina, 1969-, et al.
(author)
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Depressive Symptoms Moderate the Association Between Appetite and Health Status in Patients With Heart Failure
- 2018
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In: Journal of Cardiovascular Nursing. - : Lippincott Williams & Wilkins. - 0889-4655 .- 1550-5049. ; 33:2, s. E15-E20
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Journal article (peer-reviewed)abstract
- Background: Decreased appetite and depressive symptoms are clinical problems in patients with heart failure. Both may result in impaired health status. Objective: The aims of this study were to investigate the association between appetite and health status in patients with heart failure and to explore whether depressive symptoms moderate this association. Methods: In this cross-sectional study, patients with heart failure (n = 186; mean age, 71 years), New York Heart Association class II to IV, participated. Data on appetite (Council of Nutrition Appetite Questionnaire), depressive symptoms (Patient Health Questionnaire-9), and health status (EQ-5D 3-level scale [EQ-5D-3L] descriptive system, EQ-5D-3L index, and EQ Visual Analog Scale) were collected by self-rating questionnaires. Pearson correlation was used to investigate the association between appetite and health status. Multiple regression was performed to examine whether depressive symptoms moderate the association between appetite and health status. Results: There was a significant association between appetite and health status for EQ-5D-3L descriptive system, mobility (P < .001), pain/discomfort (P < .001), and anxiety/depression (P < .001). This association was also shown in EQ-5D-3L index (P < .001) and EQ Visual Analog Scale (P < .001). Simple slope analysis showed that the association between appetite and health status was only significant for patients without depressive symptoms (B = 0.32, t = 4.66, P < .001). Conclusions: Higher level of appetite was associated with better health status. In moderation analysis, the association was presented for patients without depressive symptoms. Decreased appetite is an important sign of poor health status. To improve health status, health professionals should have greater attention on appetite, as well on signs of depressive symptoms.
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| 21. |
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| 22. |
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| 23. |
- Andreae, Christina, 1969-, et al.
(author)
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The associations between physical activity and appetite in patients with heart failure : a prospective observational study
- 2018
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Conference paper (peer-reviewed)abstract
- Introduction: Physical activity and appetite both play a crucial role for health outcomes and quality of life in patients with heart failure. Nevertheless, both of these key functions are frequently decreased in patients with heart failure. Whilst most attention focuses independently on the physical activity levels, the associations with appetite has been insufficiently investigated. The aim was therefore to explore the associations between physical activity and appetite in community dwelling heart failure patients. Methods: This prospective observational study consisted of 186 patients with symptomatic heart failure of whom 56 (30%) were women and 130 (70%) were men. Mean age was 70.7 (SD=11 years), the majority had NYHA-class II, 114 (63%). Objective and subjective methods were used to measure physical activity include a wearable actigraph (SenceWear) for 4 days and six minutes’ walk test. The actigraph calculate total energy expenditure, active energy expenditure, number of steps and METs daily average index. Patients also stated their physical activity level on a numeric rating scale. A self-reported questionnaire, the Council on Nutrition Appetite Questionnaire was used to assess appetite. Simple linear regression was conducted to explore the associations between physical activity and appetite at baseline and at 18-month follow-up. Results: In general, the levels of physical activity in this sample was low and appetite was poor. There was a significant association between objective physical activity measures and appetite at baseline ranging between (p=<0.001-0.041). The number of steps and walking distance had the strongest association, each explaining 6% and 7% of the total variance in appetite. At the 18-month follow-up, all objective and subjective physical activity measures were associated with appetite (p=0.001-0.035) with the number of steps being most strongly associated (p=<0.001) explaining 14% of the total variation in appetite. Conclusions: Patients with heart failure who are more physically active experiences better appetite. These findings underscore the importance of placing greater attention on both physical activity and appetite in clinical practice as these factors has implications for patient’s health outcomes. Further longitudinally oriented studies are needed to determine whether there is a causal relationship between physical activity and appetite in heart failure populations. Keywords: Appetite, Heart Failure, Physical activity
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| 24. |
- Andreae, Christina, et al.
(author)
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The relationship between physical activity and appetite in heart failure – A cross sectional study
- 2017
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In: European Journal of Heart Failure. - : John Wiley & Sons. - 1388-9842 .- 1879-0844. ; 19:S1, s. 135-135
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Journal article (peer-reviewed)abstract
- Background: Physical activity and appetite are important for maintaining physical health. Yet, sedentary lifestyle and poor appetite are frequently observed in the heart failure (HF) population. However, the relationships between these phenomena are not yet clearly understood. Purpose: To investigate the relationship between physical activity and appetite in patients with stable HF.Methods: In this cross sectional study, a consecutive sample of 186 patients with confirmed HF with NYHA class II-IV (median age 72y, 70% men, NYHA class II 61%) participated in the study. Patients were recruited from three HF outpatient clinics in central Sweden. Physical activity measures included total energy expenditure (TEE), active energy expenditure (AEE) above 3 METs, average daily METs and number of steps per day during four days using a validated multi-sensor wearable armband (SenseWear®, Body Monitoring System). Patients also self-reported their physical activity on a ten point numeric rating scale, from extremely low (1) to extremely high (10). Self-reported appetite was measured by Council on Nutrition Appetite Questionnaire (CNAQ), an 8-item instrument (score range 8-40) where CNAQ ≤28 indicate poor appetite. Associations between physical activity and appetite were analyzed by Spearman correlation while differences in physical activity between poor vs good appetite were analyzed using Mann Whitney U test.Results: There was a significant positive relationship between physical activity and appetite assessed by TEE (rs=.184, p=.012), AEE of moderate intensity >3 METs (rs=.262, p=.000), number of steps (rs=.292, p=.000), average METs intensity (rs=.249, p=.001), and self- reported physical activity (rs=.191, p =.009). Levels of physical activity in the low appetite group differed significantly from the group with better appetite, this was seen in all physical dimensions, TEE (U=3225, z=-2.26, p=.024), AEE (U=2902, z=-3.178, p=.001), number of steps (U=2706, z=-3.734, p=.000), average METs intensity (U=3128, z=-2.541, p=.011), levels of self-reported physical activity (U=3185, z=-2.47, p=.013).Conclusion: This study shows that physical activity is associated with appetite and that levels of physical activity differs between patients with poor and good appetite. These findings has implications for both research and practice and underlines the importance in monitoring both physical activity and appetite. Further research is needed to determine whether interventions targeting physical activity also improve appetite and vice versa in the HF population.
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| 25. |
- Askenäs, Linda, 1972-, et al.
(author)
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Co-Design To Self-Organizing Exergaming : A Study Of Stimulating Physical Activity For Elderly People With A Chronic Health Condition
- 2019
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In: IADIS International Conference Sustainability, Technology and Education 2019. - : IADIS Press. - 9789898533845 ; , s. 35-41
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Conference paper (peer-reviewed)abstract
- Life expectancy is increasing and physical activity has been shown to be an effective to improve outcomes for patients with chronic conditions. However, there are a lot of barriers that make elderly people with chronic disease not being physical active. The purpose of this study is to explore the potential of using co-design as a method to implement physical activity in a social context for elderly organizations. With the aim to explore exergaming in a social setting, a co-design process was conducted using the experience-based design theory. The study also relied on studies using gaming as exercise method for heart failure patients. The method was participative observations that was documented as a storytelling. The project contained a number of key co-design actions; engaging users early; using the competition element; engaging patient organization and bringing the design into an existing social context; focus on self-organizing, not as a plan more focus an emerging property that may appear; practical testing element in the design made it possible to understand the multiple views of motivational factors. The project should allow for and encourage a multifaceted outcome, as this would reach and satisfy broader layers of people.
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