| 1. |
- Allemann, Hanna, 1979-
(författare)
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Online support for informal carers of persons with heart failure : Focus on perceptions, development and experiences
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Heart failure (HF) is a common condition, and its prevalence is expected to increase. The illness trajectory is unpredictable, and its effects will include a potential impact on informal carers, i.e., family, friends, and significant others. Sometimes these persons are affected by the help and care they provide in such a way that they might themselves need support. However, they may be unrecognised in their endeavours, and might also experience a lack of support, especially from healthcare. Online solutions are considered to have the potential to provide accessible support to carers that is also anticipated to be cost-effective. Aim: This thesis focuses on support to informal carers to persons living with HF, but also take the viewpoint of the person with HF by exploring social supports associations with their health and well-being. The overall aim was to explore perceptions, development, and experiences of online support for informal carers. Method: This thesis comprises four studies. Study I had a cross-sectional design using self-reported data and data from the Swedish Pace-maker and ICD Registry. Data from 1,550 persons with HF who were living with an ICD and who had complete data on the outcome variable were utilised for both descriptive analysis and logistic regression. The outcome variable, perceived social support, was measured using the questionnaire Multidimensional Scale of Perceived Social Support (MSPSS), which includes measuring support from significant others, family, and friends. The logistic regression was conducted to compare those dichotomised as having low/medium perceived social support to those having high levels of support. Study II had a qualitative design, and data were collected through 8 focus groups with 23 informal carers of persons with HF to explore their perceptions of how online solutions could be of value for support. Data were analysed using qualitative content analysis. Study III had a descriptive design. It describes the co-design process of an online support pro-gramme for carers through three phases. In phase I, topics and content that reflected carers needs and preferences were identified. In phase II, the content for the support programme was developed and through phase III the content was refined and finalised. Informal carers participated in every phase, and the co-design process also involved professionals with expertise in, for example, HF and caregiving, for the development of content. It was an iterative process, moving back and forth between phases, and the re-search group acted as coordinators and ensured that carers’ voices were kept central to the process. Study IV had a qualitative design, and data were collected through individual semi-structured interviews with 15 carers. Interviews were analysed using qualitative content analysis. The study focused on informal carers' experiences of online, co-designed support pro-gramme while being participants in a randomised controlled trial (RCT) that has the aim of studying the effects of engaging with the programme. Results: The findings show that one in five diagnosed with HF and living with an ICD reported low/medium levels of social support and that these persons had higher odds of negative psychosocial outcomes. This un-derscores the value and importance of support from informal carers for the well-being of those with HF. The thesis focused on perceptions, development, and experiences of online support for informal carers. The findings suggest that a co-designed support programme has the potential to be usable and useful for carers considering the online format and its content. It may provide insights, preparedness, and validation in relation to being a carer of a person with HF. However, carers may have an ‘ambiguous stance’ towards the online format and going online for support may not be the preferred form of support for all carers. Conclusion: A co-designed online support programme, when built on a trusted platform within a healthcare context, may be considered both usable and useful for carers. The online format and content also provide the potential to offer timely and adaptable support. The content, developed in a collaboration between carers and professionals, offers evidence-based, relevant information, thereby possibly avoiding seeming impersonal, which can also be beneficial. The programme acknowledges the intertwined lives of carers and those with HF, and its content reflects this, potentially also enhancing its perception as usable and useful for carers. Still, the potential of the support programme depends on carers being aware of its existence, or being made aware, and can further recognise its value. The support programme is considered to have the capacity to be relevant for a broad group of carers, and therefore efforts may be of importance to ensure it is accessed and utilised. However, it is also important to take into account that not everyone may be willing or able to go online for support, or may wish to stay in a caring role. Healthcare also needs to recognise this when offering support to carers and the online support may be regarded an option among several.
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| 2. |
- Allemann, Hanna, 1979-, et al.
(författare)
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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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Ingår i: Journal of Cardiovascular Nursing. - : Lippincott Williams & Wilkins. - 0889-4655 .- 1550-5049. ; 33:6, s. E1-E8
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Tidskriftsartikel (refereegranskat)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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| 3. |
- Ericsson, Maria, 1970-, et al.
(författare)
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Factors associated with patient decision time in ST-segment elevation myocardial infarction, in early and late responders : an observational cross-sectional survey study
- 2022
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press. - 1474-5151 .- 1873-1953. ; 21:7, s. 694-701
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: A short time span from symptom onset to reperfusion is imperative in ST-segment elevation myocardial infarction (STEMI). The aim of this study was to determine factors associated with patient decision time for seeking care in STEMI, particularly how symptoms were experienced and affected patient response.METHODS AND RESULTS: A multicentre cross-sectional self-report survey study was completed at five Swedish hospitals representing geographic diversity. The 521 patients were divided into three groups based on their time to respond to symptoms: early (<20 min), intermediate (20-90 min), and late responders (>90 min). Only one out of five patients both responded early and called an ambulance within 20 min. Believing symptoms were cardiac in origin [odds ratio (OR) 2.60], male sex (OR 2.40), left anterior descending artery as culprit artery (OR 1.77), and bystanders calling an ambulance (OR 4.32) were factors associated with early response and correct action. Associated symptoms such as dyspnoea (OR 1.67) and weakness (OR 1.65) were associated with an early action (<20 min), while chest pain was not independently associated with response time. Cold sweat (OR 0.61) prevented late care-seeking behaviour as did a high symptom burden (OR 0.86).CONCLUSION: Misinterpretation of symptoms delays correct care-seeking behaviour because patient expectations may not be aligned with the experience when stricken by Myocardial infarction. Therefore, it is imperative to continuously enhance public awareness in correct symptom recognition and appropriate care-seeking behaviour and to make efforts to educate individuals at risk for STEMI as well as their next of kin.
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| 4. |
- Ericsson, Maria, 1970-
(författare)
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No time to waste : Pre-hospital actions and time delays in patients with ST elevation myocardial infarction – temporal trends and prognostic impact on short- and long-term survival
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: In ST-elevation myocardial infarction (STEMI) patients, a rapid diagnosis is imperative to reduce total ischaemic time minimizing risk for heart failure, serious arrhythmias, or death. Prehospital context is complex, and the patient delay constitute major part of the pre-hospital phase. Patient delay has been prone hard to impact but the system delay has had major transformation during the years. Aim: The overall aim was to explore pre-hospital actions and time delays in STEMI patients, investigating temporal trends and estimate prognostic impact on short- and long-term survival. Methods: Study I, was a multicentre survey study, exploring decisions, and actions in relation to the choice of first medical contact (FMC). Study II was a sub-study to the multicentre survey, exploring the interaction between tele nurses and callers in authentic calls when the caller with an evolving myocardial infarction (MI) chose to call Swedish health care direct (SHD) as FMC. Study III, was based on the same database as study I, exploring early (< 20 minutes) and late (> 90 minutes) response from symptom onset in STEMI patients. Study IV, was based on SWEDEHEART-registry, investigating temporal trends in pre-specified risk groups for pro-longed pre-hospital delay times (PHDT), estimating cumulative survival in short and long term stratified in six different PHDT groups. Results: Study I, only half of the patients’ contacted emergency medical services (EMS) as their FMC. Choice of FMC prolonged time to diagnosis in relation of calling EMS. Choosing SHD pro-longed delay to diagnosis with 38 minutes. Study II, four interactions were found between tele-nurses and callers, reasoning, distinct, irrational, and indecisive, and type of interaction could lead or mislead the call moving progressively forward or not. Study III, bystanders calling EMS, men, intensive and alarming symptoms such as dyspnoea and weakness and to interpret symptoms attributed from the heart was associated with a rapid action calling an ambulance within 20 minutes, which was performed by one of five patients. Study IV, trend curves for median PHDT was hump shaped for the 20 years studied. Women, older age, and patients with diabetes had consistent pro-longed PHDT, except for the oldest patients (> 80 years). PHDT was an independent risk for short- and long-term survival. Patients with the shortest PHDT 0-1 hour had the highest mortality up to five days. In five-year follow up this group accompanied with the group within 1-2 hours had highest estimated survival. Conclusion: Pre-hospital delay is an independent predictor of short- and long-term survival. To interpret symptom correctly and knowledge in how to act, calling an ambulance rapidly, impact time to diagnosis and diminish time delays. Pre-hospital delay merits further attention regarding future interventions.
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| 5. |
- Hellström Ängerud, Karin, et al.
(författare)
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Differences in symptoms, first medical contact and pre-hospital delay times between patients with ST- and non-ST-elevation myocardial infarction
- 2019
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Ingår i: European Heart Journal. - : Sage Publications. - 2048-8726 .- 2048-8734. ; 8:3, s. 201-207
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Tidskriftsartikel (refereegranskat)abstract
- Aim: In ST-elevation myocardial infarction, time to reperfusion is crucial for the prognosis. Symptom presentation in myocardial infarction influences pre-hospital delay times but studies about differences in symptoms between patients with ST-elevation myocardial infarction and non-ST-elevation myocardial infarction are sparse and inconclusive. The aim was to compare symptoms, first medical contact and pre-hospital delay times in patients with ST-elevation myocardial infarction and non-ST-elevation myocardial infarction.Methods and results: This multicentre, observational study included 694 myocardial infarction patients from five hospitals. The patients filled in a questionnaire about their pre-hospital experiences within 24 h of hospital admittance. Chest pain was the most common symptom in ST-elevation myocardial infarction and non-ST-elevation myocardial infarction (88.7 vs 87.0%, p=0.56). Patients with cold sweat (odds ratio 3.61, 95% confidence interval 2.29–5.70), jaw pain (odds ratio 2.41, 95% confidence interval 1.04–5.58), and nausea (odds ratio 1.70, 95% confidence interval 1.01–2.87) were more likely to present with ST-elevation myocardial infarction, whereas the opposite was true for symptoms that come and go (odds ratio 0.58, 95% confidence interval 0.38-0.90) or anxiety (odds ratio 0.52, 95% confidence interval 0.29–0.92). Use of emergency medical services was higher among patients admitted with ST-elevation myocardial infarction. The pre-hospital delay time from symptom onset to first medical contact was significantly longer in non-ST-elevation myocardial infarction (2:05 h vs 1:10 h, p=0.001).Conclusion: Patients with ST-elevation myocardial infarction differed from those with non-ST-elevation myocardial infarction regarding symptom presentation, ambulance utilisation and pre-hospital delay times. This knowledge is important to be aware of for all healthcare personnel and the general public especially in order to recognise symptoms suggestive of ST-elevation myocardial infarction and when to decide if there is a need for an ambulance.
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| 6. |
- Härle, Karolina, 1980-
(författare)
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Enterocutaneous fistula : Patients', families' and healthcare professionals' experiences - epidemiology and outcomes
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Enterocutaneous fistula is a rare and complex condition with high morbidity. The condition causes multiple health problems, and it is both physically and psychologically demanding for the affected person and their families. Infection, fistula wound care challenges, electrolyte and fluid imbalance, and malnutrition render the individual in need of long periods of in-hospital care and homecare. This also places great demands on healthcare professionals and knowledge among healthcare professionals can be lacking. The patients have different needs and person-centred care is one way to promote individualised care based on the patient’s specific needs. Research about how enterocutaneous fistula affects the individual and their families is scarce, and healthcare professionals often have little experience providing care for these patients. There is also a lack of population-based studies on enterocutaneous fistula.Aim: The overall aims of the thesis were to explore patients’, family members’ and healthcare professionals’ experiences of enterocutaneous fistula, and to define the cohort of patients who developed an enterocutaneous fistula within a ten-year period in the southeast healthcare region of Sweden.Methods: This thesis is based on four studies and includes individual, dyadic, and focus group interviews as well as a retrospective study of medical records. The first study had a qualitative inductive design with individual in-depth interviews of nine patients with experience of living with an enterocutaneous fistula. The analysis was conducted using descriptive phenomenology according to Giorgi. The second study had a longitudinal qualitative design with in-depth dyadic interviews with seven dyads consisting of one patient and one close family member. The dyads were interviewed on three different occasions: before, shortly after and one year after reconstructive surgery. A phenomenological-hermeneutic analysis according to Lindseth and Norberg was performed. The third study had a qualitative descriptive design with five focus group interviews of healthcare professionals and the data were analysed using qualitative content analysis. The fourth study was a population-based cohort study with 187 participants and a retrospective review of medical records was performed.Result: Living with an enterocutaneous fistula meant facing an unpredictable life for months or years that causes several limitations in daily life for both the patients and their family members. Fear of leakage from the fistula appliance and dependency on intravenous supplementation caused social isolation. Both the patients and the family members struggled with psychological distress and support from the healthcare professionals was important. There were both positive and negative experiences of the provided healthcare. Lack of knowledge and understanding among the healthcare professionals affected the patients’ and families trust in the healthcare. Despite all, they were hopeful for the future and looked forward to having a life without the fistula.Providing care for patients with enterocutaneous fistula was complex, and time- and resource-consuming. The healthcare professionals struggled with different practical issues and providing care for these patients required an integrated approach involving different disciplines. Building long-lasting relationships with patients and their families was fundamental to the caring process.The annual incidence of enterocutaneous fistula was 1.87 per 100.000 persons. Cumulative enterocutaneous fistula related in-hospital care, until closure or end of follow-up, was median 4 (range 0–61) weeks. Thirty-seven per cent of the patients needed parenteral supplementation and 80% needed help with fistula wound care. Home-based healthcare, i.e., fistula wound care, resources for parenteral feeding and access to 24-hour emergency wound care at home, was provided to 42.2% of the patients. Estimated overall mortality at one, three, and five years was 33.7%, 42.1%, and 47.6%, respectively. Mortality was dominated by patients who did not have spontaneous closure of the enterocutaneous fistula or undergo reconstructive surgery.Conclusions: Enterocutaneous fistula is a serious condition with a high overall mortality and the patients need a lot of healthcare resources. The condition restricts the patient’s and family’s daily life and leads to social isolation and psychological distress. By promoting person-centred care and patient participation, the healthcare professionals can strengthen autonomy in daily life and improve the patient’s ability to cope with the situation. Regular team meetings of the multidisciplinary team, careful planning before discharge and providing person-centred care can facilitate the care process for everyone involved.
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| 7. |
- Ingadottir, Brynja, et al.
(författare)
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Development, Usability, and Efficacy of a Serious Game to Help Patients Learn About Pain Management After Surgery : An Evaluation Study.
- 2017
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Ingår i: JMIR Serious Games. - : J M I R Publications, Inc.. - 2291-9279. ; 5:2
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Postoperative pain is a persistent problem after surgery and can delay recovery and develop into chronic pain. Better patient education has been proposed to improve pain management of patients. Serious games have not been previously developed to help patients to learn how to manage their postoperative pain.OBJECTIVE: The aim of this study was to describe the development of a computer-based game for surgical patients to learn about postoperative pain management and to evaluate the usability, user experience, and efficacy of the game.METHODS: A computer game was developed by an interdisciplinary team following a structured approach. The usability, user experience, and efficacy of the game were evaluated using self-reported questionnaires (AttrakDiff2, Postoperative Pain Management Game Survey, Patient Knowledge About Postoperative Pain Management questionnaire), semi-structured interviews, and direct observation in one session with 20 participants recruited from the general public via Facebook (mean age 48 [SD 14]; 11 women). Adjusted Barriers Questionnaire II and 3 questions on health literacy were used to collect background information.RESULTS: Theories of self-care and adult learning, evidence for the educational needs of patients about pain management, and principles of gamification were used to develop the computer game. Ease of use and usefulness received a median score between 2.00 (IQR 1.00) and 5.00 (IQR 2.00) (possible scores 0-5; IQR, interquartile range), and ease of use was further confirmed by observation. Participants expressed satisfaction with this novel method of learning, despite some technological challenges. The attributes of the game, measured with AttrakDiff2, received a median score above 0 in all dimensions; highest for attraction (median 1.43, IQR 0.93) followed by pragmatic quality (median 1.31, IQR 1.04), hedonic quality interaction (median 1.00, IQR 1.04), and hedonic quality stimulation (median 0.57, IQR 0.68). Knowledge of pain medication and pain management strategies improved after playing the game (P=.001).CONCLUSIONS: A computer game can be an efficient method of learning about pain management; it has the potential to improve knowledge and is appreciated by users. To assess the game's usability and efficacy in the context of preparation for surgery, an evaluation with a larger sample, including surgical patients and older people, is required.
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| 8. |
- Ingadottir, B., et al.
(författare)
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Patients are expecting to learn more: A longitudinal study of patients with heart failure undergoing device implantation
- 2020
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Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 103:7, s. 1382-1389
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To explore the educational expectations and experiences of patients with heart failure in relation to device implantation. Methods: In this longitudinal study, patients at six Swedish and Icelandic hospitals answered instruments about their knowledge expectations, before the device implantation, and about the knowledge they had received at two weeks, six months and 12 months after the procedure. Predictors for fulfillment of knowledge expectations were assessed with linear mixed model analysis. Results: Patients (N = 133, mean age 69.8 (±9.7) years, 80 % men) had high knowledge expectations, which for 83 % of them were unfulfilled. Predictors for fulfillment of knowledge expectations were access to knowledge from healthcare professionals (β 0.74, 95 % CI: 0.42–1.10), educational level (β −0.30, 95 % CI: −0.52 to −0.07) and knowledge expectations (β -1.03, 95 % CI: −1.30 to −0.80). Healthcare professionals were the main information source (89 %), 74 % of patients received written information, and 19 % had used the Internet. Conclusions: Patients receive less knowledge than they expect, and individual factors and communication with healthcare professionals are related to their experience. Face-to-face is the most common method of delivering education. Practice implications: Healthcare professionals should assess patients’ expectations for information and consider implementing more diversity in their educational practices. © 2020 Elsevier B.V.
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| 9. |
- Isaksson, Rose-Marie, 1964-, et al.
(författare)
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Geographical Diversities in Symptoms, Actions and Prehospital Delay Times in Swedish ST-Elevation Myocardial Infarction(STEMI) Patients : A Descriptive Multicenter Cross-Sectional Survey Study
- 2019
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Ingår i: Insights of Cardiology Open Access. - : GRF Publishers.
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Tidskriftsartikel (refereegranskat)abstract
- Background: Geographical variations in cardiovascular mortality have been reported in Sweden as well as in other countries. Little attention has been given to possible variations in symptoms, actions and pre-hospital delay times in ST-elevation myocardial infarction (STEMI) patients, as a reason for this diversity. We aimed to study whether STEMI patients from the northern and southern parts of Sweden differ in symptoms and actions that may affect the pre-hospital delay times.Methods: SymTime was a multicentre cross-sectional survey study where STEMI patients admitted to the coronary care unit completed a validated questionnaire within 24 hours after admission. In total, 531 patients were included, 357 in the southern and 174 in the northern part of Sweden.Results: There were no significant differences in age. However, patients in the north had more often hypertension (52 vs 42%, p=0.02) or other concomitant comorbidities (24 vs 14%, p=0.01). Patients in the south experienced more anxiety (14 vs. 7%, p=0.01) and fear (23 vs. 14%, p=0.02) and more often contacted the emergency medical services (EMS) as first medical contact (FMC) (54 vs 44%, p=0.05). There were no differences in other main or associated symptoms or in pre-hospital delay times. Conclusions: Patients with STEMI in the southern vs. the northern part of Sweden had more anxiety and fear, despite that they were less often alone at onset of symptoms. There were no differences in pre-hospital delay times. Although patients from the southern region contacted EMS as their FMC more frequently, it is still worrying that too few patients utilize the EMS.
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| 10. |
- Lundgren, Oskar, 1979-, et al.
(författare)
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A journey through chaos and calmness : experiences of mindfulness training in patients with depressive symptoms after a recent coronary event - a qualitative diary content analysis.
- 2018
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Ingår i: BMC Psychology. - : BioMed Central. - 2050-7283. ; 6:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Psychological distress with symptoms of depression and anxiety is common and unrecognized in patients with coronary artery disease (CAD). Efforts have been made to treat psychological distress in CAD with both conventional methods, such as antidepressant drugs and psychotherapy, and non-conventional methods, such as stress management courses. However, studies focusing on the experiences of mindfulness training in this population are still scarce. Therefore, the aim of this study was to explore immediate experiences of mindfulness practice among CAD patients with depressive symptoms.METHODS: A qualitative content analysis of diary entries, written immediately after practice sessions and continuously during an 8-week long Mindfulness Based Stress Reduction course (MBSR), was applied.RESULTS: Twelve respondents participated in the study. The main category: a journey through chaos and calmness captured the participants' concurrent experiences of challenges and rewards over time. This journey appears to reflect a progressive development culminating in the harvesting of the fruits of practice at the end of the mindfulness training. Descriptions of various challenging facets of mindfulness practice - both physical and psychological - commonly occurred during the whole course, although distressing experiences were more predominant during the first half. Furthermore, the diary entries showed a wide variety of ways of dealing with these struggles, including both constructive and less constructive strategies of facing difficult experiences. As the weeks passed, participants more frequently described an enhanced ability to concentrate, relax and deal with distractions. They also developed their capacity to observe the content of their mind and described how the practice began to yield rewards in the form of well-being and a sense of mastery.CONCLUSIONS: Introducing MBSR in the aftermath of a cardiac event, when depressive symptoms are present, is a complex and delicate challenge in clinical practice. More nuanced information about what to expect as well as the addition of motivational support and skillful guidance during the course should be given in accordance with the participants' experiences and needs.TRIAL REGISTRATION: The trial was retrospectively registered in clinicaltrials.gov (registration number: NCT03340948 ).
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