1.
Liljeroos, Maria
(författare)
Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
2017
Doktorsavhandling (övrigt vetenskapligt/konstnärligt) abstract
Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
2.
Ingadóttir, Brynja
(författare)
Learning as a patient : What and how individuals want to learn when preparing for surgery, and the potential use of serious games in their education
2016
Doktorsavhandling (övrigt vetenskapligt/konstnärligt) abstract
Introduction: Surgical patients need knowledge to participate in their own care and to engage in self-care behaviour in the perioperative period which is important for their recovery. Patient education facilitates such knowledge acquisition and several methods can be used to facilitate it, for example, face-to-face education and brochures or using information technology such as website or computer games. Healthcare professionals have been slow to seize the possibilities that information technology has to offer within the field, including the use of serious games. To optimise patient education, the information is needed on the patients’ needs and preferences and what they think about the idea of using a serious game to learn about self-care.Aim: The overall aims of this thesis were to describe the knowledge expectations of surgical patients, to describe how surgical patients want to learn, and to explore the potential use of serious games in patient education.Methods: This thesis includes four studies that used both quantitative and qualitative data to describe aspects of patient learning in relation to surgery. Study I has a prospective and comparative design with survey data collected before surgery and before hospital discharge from 290 patients with osteoarthritis undergoing knee arthroplasty. Data was collected on fulfilment of knowledge expectations and related factors. Study II is a cross-‐sectional study in 104 patients with heart failure who had been scheduled for cardiac resynchronisation therapy (CRT) device implantation. Data was collected on knowledge expectations and related factors. In Study III the perceptions of 13 surgical patients towards novel and traditional methods to learn about post-operative pain management are explored in a qualitative interview study using content analysis. Study IV describes the development and evaluation of a serious game to learn about pain management with the participation of 20 persons recruited from the public. The game was developed by an interdisciplinary team following a structured approach. Data on the efficacy and usability of the game was collected in one session with questionnaires, observations and interviews.Results: Participants reported high knowledge expectations. Knowledge expectations were highest within the bio-physiological knowledge dimension on disease, treatment and complications and the functional dimension on how daily activities are affected, both of which include items on self-care. Most participants wanted to know about the possible complications related to the surgery procedure. In none of the knowledge dimensions the expectations of participants were fulfilled. Participants received most knowledge on the physical and functional issues and received least on the financial and social aspects of their illness. The main predictor of fulfilment of knowledge expectations was having access to knowledge in the hospital from doctors and nurses. Trust in the information source and own motivation to learn shaped how the participants thought about different learning methods. Although the participants were open to using novel learning methods such as websites or games they were also doubtful about their use and called for advice by healthcare professionals. To develop a serious game with the goal to learn about pain management, theories of self-care and adult learning, evidence on the educational needs of patients about pain management and principles of gamification were found useful. The game character is a surgical patient just discharged home from hospital who needs to attend to daily activities while simultaneously managing post-operative pain with different strategies. Participants who evaluated a first version of the serious game improved their knowledge and described usability of the game as high. They were positive towards this new learning method and found it suitable for learning about pain management after surgery in spite of some technical obstacles.Conclusions: Surgical patients have high knowledge expectations about all aspects of their upcoming surgery and although they prefer direct communication with healthcare professionals as a source for knowledge they might be open to try using more novel methods such as games. Preliminary short-‐term results demonstrate that a serious game can help individuals to learn about pain management, and has the potential to improve knowledge. A careful introduction, recommendation, and support from healthcare professionals is needed for implementation of such a novel method in patient education.
3.
Engelmann, Petra, et al.
(författare)
Needs of multimorbid heart failure patients and their carers : a qualitative interview study and the creation of personas as a basis for a blended collaborative care intervention
2023
Ingår i: Frontiers in Cardiovascular Medicine. - : Frontiers Media S.A.. - 2297-055X. ; 10
Tidskriftsartikel (refereegranskat) abstract
Introduction: Involving patients and carers in the development of blended collaborative care (BCC) interventions for multimorbid heart failure (HF) patients is recommended but rarely practised, and research on the patient perspective is scarce. The aim of this study is to investigate patients' and carers' care-related needs and preferences to better customize a novel international BCC intervention.Methods: A qualitative study design using framework analysis was employed. The study was performed in accordance with the EQUATOR standards for reporting qualitative research (SRQR). Patients aged at least 65 years with HF and at least two other physical diseases as well as their carers completed semistructured interviews in Germany, Italy, and Denmark. Based on these interviews, personas (prototype profiles of patients and carers) were created.Results: Data from interviews with 25 patients and 17 carers were analysed. Initially, seven country-specific personas were identified, which were iteratively narrowed down to a final set of 3 personas: (a) the one who needs and wants support, (b) the one who has accepted their situation with HF and reaches out when necessary, and (c) the one who feels neglected by the health care system. Carers identifying with the last persona showed high levels of psychological stress and a high need for support.Discussion: This is the first international qualitative study on patients' and carers' needs regarding a BCC intervention using the creation of personas. Across three European countries, data from interviews were used to develop three contrasting personas. Instead of providing "one size fits all" interventions, the results indicate that BCC interventions should offer different approaches based on the needs of individual patients and carers. The personas will serve as a basis for the development of a novel BCC intervention as part of the EU project ESCAPE (Evaluation of a patient-centred biopSychosocial blended collaborative CAre Pathway for the treatment of multimorbid Elderly patients).
4.
Hjelmfors, Lisa, et al.
(författare)
Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care
2018
Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17
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.
5.
Klompstra, Leonie, et al.
(författare)
Physical activity in patients with heart failure: barriers and motivations with special focus on sex differences
2015
Ingår i: Patient Preference and Adherence. - : DOVE MEDICAL PRESS LTD. - 1177-889X. ; 9, s. 1603-1610
Tidskriftsartikel (refereegranskat) abstract
Background: Adherence to recommendations for physical activity is low in both male and female patients with heart failure (HF). Men are more physically active than women. In order to successfully promote physical activity, it is therefore essential to explore how much and why HF patients are physically active and if this is related to sex. The aim of this study was therefore to evaluate physical activity in HF patients, to describe the factors related to physical activity, and to examine potential barriers and motivations to physical activity with special focus on sex differences. Methods: The study had a cross-sectional survey design. HF patients living at home received a questionnaire during May-July 2014, with questions on physical activity (from the Short Form-International Physical Activity Questionnaire), and potential barriers and motivations to physical activity. Results: A total of 154 HF patients, 27% women, with a mean age of 70 +/- 10 were included. In total, 23% of the patients reported a high level of physical activity, 46% a moderate level, and 34% a low level. Higher education, self-efficacy, and motivation were significantly associated with a higher amount of physical activity. Symptoms or severity of the disease were not related to physical activity. All the potential barriers to exercise were reported to be of importance. Psychological motivations were most frequently rated as being the most important motivation (41%) to be physically active. Physical motivations (33%) and social motivations were rated as the least important ones (22%). Women had significantly higher total motivation to be physically active. These differences were found in social, physical, and psychological motivations. Discussion: One-third of the HF patients had a low level of physical activity in their daily life. Severity of the disease or symptoms were not related, whereas level of education, exercise self-efficacy, and motivation were important factors to take into account when advising a HF patient about physical activity. Women reported higher motivation to be physically active than men, but there was no difference in the reported level of physical activity.
6.
Pettersson, Sara, et al.
(författare)
Developing a Culturally Appropriate Tool to Support Self-Care in Migrants with Type 2 Diabetes : A Co-Design Study
2023
Ingår i: Patient Preference and Adherence. - : Dove Medical Press. - 1177-889X. ; 17, s. 2557-2567
Tidskriftsartikel (refereegranskat) abstract
INTRODUCTION: Migrants, especially from the Middle East, experience poorer health outcomes and face greater difficulties in accessing healthcare compared to native populations and there is a need for culturally appropriate education for this vulnerable group. The purpose of this study is to describe the process of developing a culturally appropriate tool to support self-care in migrants with type 2 diabetes.METHODS: In this Co-design study, a tool for supporting self-care in migrants with type 2 diabetes was developed. Migrant patients with type 2 diabetes, healthcare providers and researchers participated in the process, which was based on six elements; engage, plan, explore, develop, decide and change. From February 2021 to December 2022, idea groups were conducted, and a tool was developed through brainstorming, prioritizing and prototyping.RESULTS: In total, 14 migrant patients, ten health care providers and four researchers participated in the Co-design process. The patients wished to receive information about type 2 diabetes self-care behaviour in their own languages. The healthcare providers asked for clear instructions on where to guide their patients regarding reliable information about diabetes in the patient's own language. All participants agreed that information can be presented in different formats, either: text (paper or online), audio-visual via recorded videos and/or lectures and pictures.DISCUSSION: The Co-design process led to several important insights and experiences related to the importance of diverse cultural backgrounds. When conducting a Co-design study with end-users as stakeholders, it is significant that the stakeholders have a diverse background in experiences, both as patients as well as those who deliver or implement the health service. In this study it was of great importance to include patients with diverse backgrounds regarding; gender, age, health literacy, occupation, years living in Sweden and duration of diabetes.
7.
Sedlar, Natasa, et al.
(författare)
Factors related to self-care behaviours in heart failure : A systematic review of European Heart Failure Self-Care Behaviour Scale studies
2017
Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 16:4, s. 272-282
Tidskriftsartikel (refereegranskat) abstract
Background: Self-care is an important element in the comprehensive management of patients with heart failure. The European Heart Failure Self-Care Behaviour Scale (EHFScBS) was developed and tested to measure behaviours performed by the heart failure patients to maintain life, healthy functioning, and wellbeing.Aims: The purpose of this review was to evaluate the importance of factors associated with heart failure self-care behaviours as measured by the EHFScBS.Methods: Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines were used to search major health databases (PubMed, Scopus and ScienceDirect). Obtained associating factors of heart failure self-care were qualitatively synthesised and the association levels of most commonly addressed factors were further explored.Results: We identified 30 studies that were included in the review; a diverse range of personal and environmental factors associated with self-care behaviours in heart failure patients were identified. Age, health-related quality of life, gender, education, New York Heart Association class, depressive symptoms and left ventricular ejection fraction were most often correlated with the EHFScBS score. Consistent evidence for the relationship between self-care behaviours and depression was found, while their association with New York Heart Association class and health-related quality of life was non-significant in most of the studies. Associations with other factors were shown to be inconsistent or need to be further investigated as they were only addressed in single studies.Conclusion: A sufficient body of evidence is available only for a few factors related to heart failure self-care measured by the EHFScBS and indicates their limited impact on patient heart failure self-care. The study highlights the need for further exploration of relationships that would offer a more comprehensive understanding of associating factors.
8.
Aamodt, Ina Thon, et al.
(författare)
Health Care Professionals Perceptions of Home Telemonitoring in Heart Failure Care: Cross-Sectional Survey
2019
Ingår i: Journal of Medical Internet Research. - : JMIR PUBLICATIONS, INC. - 1438-8871. ; 21:2
Tidskriftsartikel (refereegranskat) abstract
Background: Noninvasive telemonitoring (TM) can be used in heart failure (HF) patients to perform early detection of decompensation at home, prevent unnecessary health care utilization, and decrease health care costs. However, the evidence is not sufficient to be part of HF guidelines for follow-up care, and we have no knowledge of how TM is used in the Nordic Baltic region. Objective: The aim of this study was to describe health care professionals (HCPs) perception of and presumed experience with noninvasive TM in daily HF patient care, perspectives of the relevance of and reasons for applying noninvasive TM, and barriers to the use of noninvasive TM. Methods: A cross-sectional survey was performed between September and December 2016 in Norway and Lithuania with physicians and nurses treating HF patients at either a hospital ward or an outpatient clinic. A total of 784 questionnaires were sent nationwide by postal mail to 107 hospitals. The questionnaire consisted of 43 items with close- and open-ended questions. In Norway, the response rate was 68.7% (226/329), with 57 of 60 hospitals participating, whereas the response rate was 68.1% (310/455) in Lithuania, with 41 of 47 hospitals participating. Responses to the closed questions were analyzed using descriptive statistics, and the open-ended questions were analyzed using summative content analysis. Results: This study showed that noninvasive TM is not part of the current daily clinical practice in Norway or Lithuania. A minority of HCPs responded to be familiar with noninvasive TM in HF care in Norway (48/226, 21.2%) and Lithuania (64/310, 20.6%). Approximately half of the HCPs in both countries perceived noninvasive TM to be relevant in follow-up of HF patients in Norway (131/226, 58.0%) and Lithuania (172/310, 55.5%). For physicians in both countries and nurses in Norway, the 3 most mentioned reasons for introducing noninvasive TM were to improve self-care, to reduce hospitalizations, and to provide high-quality care, whereas the Lithuanian nurses described ability to treat more patients and to reduce their workload as reasons for introducing noninvasive TM. The main barriers to implement noninvasive TM were lack of funding from health care authorities or the Territorial Patient Fund. Moreover, HCPs perceive that HF patients themselves could represent barriers because of their physical or mental condition in addition to a lack of internet access. Conclusions: HCPs in Norway and Lithuania are currently nonusers of TM in daily HF care. However, they perceive a future with TM to improve the quality of care for HF patients. Financial barriers and HF patients condition may have an impact on the use of TM, whereas sufficient funding from health care authorities and improved knowledge may encourage the more widespread use of TM in the Nordic Baltic region and beyond.
9.
Brunner-La Rocca, H.P., et al.
(författare)
Challenges in personalised management of chronic diseases-heart failure as prominent example to advance the care process
2016
Ingår i: EPMA Journal. - : Springer. - 1878-5077 .- 1878-5085. ; 7
Forskningsöversikt (refereegranskat) abstract
Chronic diseases are the leading causes of morbidity and mortality in Europe, accounting for more than 2/3 of all death causes and 75 % of the healthcare costs. Heart failure is one of the most prominent, prevalent and complex chronic conditions and is accompanied with multiple other chronic diseases. The current approach to care has important shortcomings with respect to diagnosis, treatment and care processes. A critical aspect of this situation is that interaction between stakeholders is limited and chronic diseases are usually addressed in isolation. Health care in Western countries requires an innovative approach to address chronic diseases to provide sustainability of care and to limit the excessive costs that may threaten the current systems. The increasing prevalence of chronic diseases combined with their enormous economic impact and the increasing shortage of healthcare providers are among the most critical threats. Attempts to solve these problems have failed, and future limitations in financial resources will result in much lower quality of care. Thus, changing the approach to care for chronic diseases is of utmost social importance.
10.
Ekdahl, Anne W, et al.
(författare)
Costs and Effects of an Ambulatory Geriatric Unit (the AGe-FIT Study) : A Randomized Controlled Trial
2015
Ingår i: Journal of the American Medical Directors Association. - : Elsevier. - 1538-9375 .- 1525-8610. ; 16:6, s. 497-503
Tidskriftsartikel (refereegranskat) abstract
OBJECTIVES: To examine costs and effects of care based on comprehensive geriatric assessment (CGA) provided by an ambulatory geriatric care unit (AGU) in addition to usual care.DESIGN: Assessor-blinded, single-center randomized controlled trial.SETTING: AGU in an acute hospital in southeastern Sweden.PARTICIPANTS: Community-dwelling individuals aged 75 years or older who had received inpatient hospital care 3 or more times in the past 12 months and had 3 or more concomitant medical diagnoses were eligible for study inclusion and randomized to the intervention group (IG; n = 208) or control group (CG; n = 174). Mean age (SD) was 82.5 (4.9) years.INTERVENTION: Participants in the IG received CGA-based care at the AGU in addition to usual care.OUTCOME MEASURES: The primary outcome was number of hospitalizations. Secondary outcomes were days in hospital and nursing home, mortality, cost of public health and social care, participant' sense of security in care, and health-related quality of life (HRQoL).RESULTS: Baseline characteristics did not differ between groups. The number of hospitalizations did not differ between the IG (2.1) and CG (2.4), but the number of inpatient days was lower in the IG (11.1 vs 15.2; P = .035). The IG showed trends of reduced mortality (hazard ratio 1.51; 95% confidence interval [CI] 0.988-2.310; P = .057) and an increased sense of security in care interaction. No difference in HRQoL was observed. Costs for the IG and CG were 33,371£ (39,947£) and 30,490£ (31,568£; P = .432).CONCLUSIONS AND RELEVANCE: This study of CGA-based care was performed in an ambulatory care setting, in contrast to the greater part of studies of the effects of CGA, which have been conducted in hospital settings. This study confirms the superiority of this type of care to elderly people in terms of days in hospital and sense of security in care interaction and that a shift to more accessible care for older people with multimorbidity is possible without increasing costs. This study can aid the planning of future interventions for older people.TRIAL REGISTRATION: clinicaltrials.gov identifier: NCT01446757.
