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- Härle, Karolina, 1980-
(author)
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Enterocutaneous fistula : Patients', families' and healthcare professionals' experiences - epidemiology and outcomes
- 2023
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Doctoral thesis (other academic/artistic)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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| 2. |
- 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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| 3. |
- Waldemar, Annette, 1969-
(author)
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In-hospital family-witnessed adult resuscitation : Perspectives of patients, families and healthcare professionals
- 2023
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Doctoral thesis (other academic/artistic)abstract
- Background Several international organizations recommend family-witnessed resuscitation (FWR) in hospitals, which means that the family should be offered to be present during resuscitation. These recommendations are based on research that shows that it is usually beneficial for the family to be present. The family can see that everything was done for the patient, they can say goodbye, they acknowledge that the patient passed away and the grieving process is facilitated. However, research has yet to examine how FWR affects the patient and family members who were present during the cardiac arrest and what it is like to live on with the shared experience. Healthcare professionals (HCPs) in general are sceptical of FWR, and current guidelines that recommend FWR have not made a significant im-pact in healthcare. HCPs believe that FWR could worsen the outcome for the patient and that the family could be psychologically damaged by being present during resuscitation.HCPs also express uncertainty about how to act during FWR, because they have not received education or training about FWR. There is a need for research concerning the outcomes of FWR in hospitalized adult patients. Research on the experiences, attitudes, and self-confidence of HCPs in Sweden in relation to FWR, as well as the shared experiences of patients and families, is lacking. There is also lack of research exploring whether an educational intervention can have a positive impact on attitudes and self-confidence among HCPs. Overall Aim The overall aim of this thesis was to describe the prevalence, processes, and outcomes of FWR; explore experiences and attitudes towards FWR among patients, families, and HCPs; and to further develop and test an educational intervention addressing HCP. Methods This thesis includes four studies, where the first study used a cross-sectional design (I), Study II was a retrospective observational cohort study, Study III was a qualitative study, and Study IV used a quasi-experimental design. The sample size ranged between 15-4846 participants across the studies. Data was collected through web surveys (I, IV), registers (II), and narrative face-to-face interviews (III). Descriptive and correlational statis-tics were used in the quantitative studies (I-II, IV) and interpretative phenomenological analysis (IPA) in the qualitative study (III). A 10-minute educational video was developed, pilot tested, and used as intervention in Study IV. The video was based on previous research covering the prevalence and outcome of FWR, attitudes among HCPs, patient and family experiences, and FWR guidelines. Results It was significantly more common that a family member was on site if the cardiac arrest occurred in acute settings such as emergency departments and intensive care units than in hospital wards (44% vs. 26%, p<0.001). In total, 395 patients (12 %) had family on site when the cardiac arrest occurred, in 186 of these cardiac arrests the family chose to witness resuscitation. (II). The mean time from initiation to termination of resuscitation was significantly longer if a family member was present (17.7 vs. 20.7 minutes, p=0.020) (II). There were no significant differences in survival rate between FWR and non-FWR, neither immediately after resuscitation (57% vs. 53%, p=0.291) nor in 30-day survival (35% vs. 29%, p=0.086) (II). HCPs reported a wide range of experiences regarding FWR (I, IV). More nurses (70%) than physicians (49%) expressed positive experiences in Study I, while in Study IV, the proportions were the opposite, with 52% of physicians and 33% of nurses reporting positive experiences. Regarding attitudes, the results from Study IV show a more positive attitude towards offering the family the opportunity to be with the patient during CPR compared to Study I. In Study IV, 77.1% of nurses and 58.1% of physicians reported a positive attitude towards FWR, while in Study I, 58.7% of nurses and 29.2% of physicians were positive. Performing defibrillation, administering drug therapies, and providing chest compressions during FWR were not considered to be a problem for either physicians or nurses. Nevertheless, being able to identify family members who demonstrate appropriate coping behaviours was more difficult, and 27% of nurses and 37% of physicians reported that they had no confidence in performing this task. Furthermore, 52.7% of nurses and 69.4% of physicians were not comfortable encouraging family members to talk to the patient during resuscitation (IV). In Study I, none of the included hospitals reported having local guidelines about FWR, while 18.6% reported that they had guidelines seven years later when Study IV was per-formed. The results suggest that the educational intervention had a positive influence on HCPs’ self-confidence during FWR (3.83±0.70 to 4.02±0.70, p<0.001) and their attitudes towards FWR (3.38±0.49 to 3.62±0.48, p<0.001) (IV). Patients and families describe powerlessness in the face of life's fragility, but also faith in life after experiencing and surviving a sudden cardiac arrest together. Even though the participants felt exposed and vulnerable in the care relationship and lacked a sense of control and continuity, they had hope and re-evaluated life, lived in the moment and saw the value in everyday life. The love they felt for people who were important to them and the gratitude for life increased after the cardiac arrest. The desire for freedom and independence also increased (III). Conclusion Surviving as well as witnessing an in-hospital cardiac arrest is a critical event making patients and family members vulnerable. To meet their needs, HCPs should routinely invite the family to witness resuscitation if it is deemed to be safe. HCPs need to show compassion and evaluate how family members are coping during the process and provide support and in-formation during and after resuscitation. Processes and outcomes do not seem to be negatively affected by FWR, even though there is some resistance to FWR among HCPs. These obstacles must be considered when planning for the implementation of FWR in daily practice. A short online educational video can be a way to improve the self-confidence and attitudes towards FWR among HCPs. This will likely result in increased compliance with national and local guidelines that recommend FWR.
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| 4. |
- Ericsson, Maria, 1970-
(author)
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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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Doctoral thesis (other academic/artistic)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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