| 1. |
- Norfjord van Zyl, Maria
(författare)
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Access to and participation in mammographic screening within a region in Sweden
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The population-based mammographic screening programme offers every woman in Sweden between 40 and 74 years of age a mammogram with the purpose of early detection of potential breast cancer. The programme is seemingly equal in its setup; however, approximately 20 percent of the women do not participate in the screening. The overall aim of Sweden’s public health policy is to create prerequisites for good and equal health, and health care, a health determinant, falls under the responsibility of the self-governed Regions. Therefore, it is important to analyse regional participation in mammographic screening to develop strategies to reach those who refrain from screening.The aim of the doctoral dissertation was to describe, explore and understand access to and participation in health care using mammographic screening as an example. Study I was a quantitative cross-sectional study based on individual and aggregated data. The analysis consisted of frequencies of data, multivariate logistic regressions, and pairwise chi-square tests. Study II used group discussions with women participating in mammographic screening for data collection. In Study III, women who had not participated in mammographic screening for at least the last two invitational rounds were interviewed. In Study IV, interviews with regional politicians were conducted. The method of analysis for Studies II and III was qualitative content analysis, and in Study IV a reflexive thematic analysis was performed.The results show that access to and participation in mammographic screening involve both structural and individual conditions. Municipality of residency as a potential proxy for distance to the mammographic facility is indicated to impact participation, as is age. Getting to and from the facility and taking time off from work are examples of structural conditions. Facilitators for and barriers to participation in mammographic screening are similar for women who participate and women who lately have not. The phases of the screening process are addressed. Psychological preparation before the visit, encounters with the staff, and managing the wait for the results reflect individual determinants. Caring for health is perceived as a shared commitment between politicians and individuals. This responsibility requires information and understanding of the impact social determinants have on the decision to participate in the screening. It also requires resources for the lowering of thresholds for participation.Encounters with the health care system and the health care systems responsiveness are important for continuous participation in mammographic screening, whereas information and knowledge are pivotal to making well-informed decisions.
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| 2. |
- Bergerum, Carolina, 1967-
(författare)
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Patient and public involvement in hospital quality improvement interventions : the mechanisms, monitoring and management
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This dissertation focuses on the mechanisms, monitoring and management of patient and public involvement in hospital quality improvement (QI) interventions. Findings from a literature review generated an initial programme theory (PT) on active patient involvement in healthcare QI interventions (Paper 1). Empirical studies were also undertaken in order to describe what was actually happening in the hospital QI teams and what patients and professionals experience influence their joint involvement (Paper 2), and to compare hospital leaders’ and managers’ experiences of managing QI interventions involving patients and the public (Paper 3). Finally, it was studied how patient-reported measures stimulate patient involvement in QI interventions in practice (Paper 4). The research had a qualitative design. The approach was descriptive and comparative, and the studies were carried out prospectively. Data were collected in two hospital organisations in Sweden and in one hospital organisation in the Netherlands. Data collection methods were a literature search (Paper 1), interviews and field observations (Paper 2 and 3) and data collection meetings (Paper 4). Altogether, 93 team meetings and meetings between the team leaders and management were attended and a total of 20 days of study visits with different forms of meetings were made. Twelve patients, 12 healthcare professionals and 17 and 8 hospital leaders and managers, respectively, participated in the interviews and data collection meetings. Realist synthesis was used to formulate the initial PT (Paper 1). Constructivist grounded theory was used to analyse and describe what was happening in the QI teams and how it was experienced by the team members (Paper 2). To compare hospital leaders’ and managers’ different, contextual meanings in Sweden and the Netherlands, the reflexive thematic analysis informed by critical realism was used (Paper 3). To order, manage and map data from 31 examples of local QI interventions associated to patient-reported measures, the framework method was used (Paper 4). The results formulate a generic PT on the mechanisms, monitoring and management perspectives of co-produced QI interventions in hospital services where patients and the public are involved. The PT provides a hypothesis on the various mechanisms at play and outcomes obtained at the different levels of hospital organisations in the process. It is argued that focus should be on experiences, interaction, relationships and dialogue, integration of context, and the matching of hospital resources to patient and public demands and needs. Subsequently, the outcome will be the resources and reasoning interplay resulting in actions and processes, experiences and knowledge, ‘product’ benefits, emotions, judgements and motivations. Monitoring constitutes an important feedback loop to enable such learnings. The PT aligns the perspectives of the clinical microsystem, improvement science and the service-dominant logic, and has a potential to explain how patient and public involvement in QI interventions might work.
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| 3. |
- Waldemar, Annette, 1969-
(författare)
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In-hospital family-witnessed adult resuscitation : Perspectives of patients, families and healthcare professionals
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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. |
- Lyttkens, Linda
(författare)
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Health Related Quality of Life in patients with screening detected Sub-Aneurysmal aorta and Abdominal Aortic Aneurysm
- 2023
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Objective Paper I: Most screening and opportunistically detected abdominal aortic aneurysms (AAA) are small and kept under surveillance for several years before preventive surgery. Living with the diagnosis of an AAA may have an influence on the patient’s life. The aim was to review systematically review the current knowledge of the effect on health related quality of life (HRQoL) and patients’ experiences of living with an AAA while under surveillance.Paper II: To investigate HRQoL and comorbidity in men with screening detected AAA, Sub-Aneurysmal aorta (SAA) and Controls at baseline screening and after long-term follow-up.Methods Paper I: A systematic literature review of quantitative and qualitative studies, which were quality assessed according to the GRADE system, was carried out. PubMed, Cochrane, Embase, CINAHL, PsycINFO, and MEDLINE were searched. Narrative synthesis and meta-analysis were performed and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement.Paper II: Between 2006 and 2015, 16 689 sixty-five-year old men participated in the aortic screening program in the county of Uppsala in Sweden. All 539 men diagnosed with an SAA or AAA were invited to participate in the study UpAAA and 324 accepted. Baseline questionnaires was distributed after screening, and at 5-year follow-up. For each year a control group of approx. 50 men, participating in the screening program with normal aorta, were included. ResultsPaper I: Synthesis and meta-analyses of studies based on the Short Form-36 demonstrated that patients with an AAA consistently rated their general health lower than controls and conveyed no significant negative impact for patients with an AAA when assessed at follow up and compared with pre-screening. Analysis of HRQoL estimates of mental health, anxiety, and depression demonstrated no significant differences for patients with AAA compared with controls, or within the AAA group. Qualitative studies revealed that patients with an AAA felt safe being under surveillance and receiving a diagnosis of AAA set thoughts and feelings in motion regarding health, ageing, and mortality. Patients’ lack of knowledge about the disease, its progression, and future planning can cause insecurity and worries.Paper II: AAA and SAA group both has impairment in the physical dimensions of HRQOL and a higher prevalence of co-morbidity at baseline, compared to controls. At 5-year follow-up, the similarities between AAA and SAA group remained with no difference in HRQOL but a higher prevalence of CVD, hypertension and diabetes in men with AAA. Compared with controls both AAA and SAA had significantly higher impairment in HRQoL, and prevalence of co-morbidity and the AAA group was most affected.
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| 5. |
- Striberger, Rebecka, 1976-
(författare)
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Secondary prevention in patients with intermittent claudication and evaluation of e-health support
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Intermittent claudication is the most common symptom of peripheral arterial disease, with impaired walking ability due to pain in the legs and with negative effects on quality of life as well as a high risk for cardiovascular events. The first line of treatment is secondary prevention, including smoking cessation, walking exercise and best medical therapy with the purpose of reducing claudication symptoms, of slowing down the progression of the atherosclerotic process and of preventing cardiovascular events. However, there is a deficiency in evidence-based systematic care regarding secondary prevention for these patients. Accordingly, new ways to support patients with intermittent claudication to adhere to treatment is needed. Further, knowledge about patients’ requisite resources for managing their disease are important to be able to improve the care of patients with intermittent claudication. Therefore, the overall aim of this thesis is to explore illness perception and associated factors for adherence to secondary prevention treatment for patients with IC. A further aim is to test and evaluate a web-based application as support for secondary prevention in patients with IC.Methods: Study I was a systematic review of current research in illness perception. The data were analysed deductively using the common-sense model, as well as inductively with conventional content analysis. In study II, health literacy was evaluated in patients with intermittent claudication regarding clinical characteristics, demographics, self-efficacy and quality of life. The method was a cross-sectional multicentre questionnaire study. In total, 158 patients were included. Study III aimed to compare illness perceptions, health literacy, self efficacy, adherence to treatment, and quality of life in patients with intermittent claudication. It was a longitudinal cohort multicentre questionnaire study where the participants from study II (n=158) were followed up after 6 (n=133) and 12 months (n=128). Descriptive and inferential statistics were used in studies II-IV. Study IV was a randomised controlled pilot trial which aimed to evaluate the usability of a web-based application and its effect on secondary prevention outcomes. Patients’ experiences of using the application were collected through focus group interviews and analysed with thematic analysis. In total, 34 patients were included. For three months, the intervention group (n=18) reported information in the application about physical activity, smoking, medication therapy, blood pressure, pain after activity, and quality of life.Results: In study I, the findings showed a lack of understanding of the symptoms, the cause and the chronic nature of the disease. The beliefs about control and cures varied from awareness of the positive effects of physical activity to the belief that walking would not have any effect, but instead make patients’ situations worse. There was fear that the disease would progress, leading to increased dependency and a lack of control. The experienced consequences showed that living with the disease meant a process of adaptation to patients’ new situations. According to study II, 52.5 % of the participants had insufficient levels of health literacy. Insufficient levels were more frequent among patients living alone compared to co-habitants. Patients with a university degree reported a significantly higher ability to access and understand health-related information. Further, patients with sufficient health literacy reported significantly higher selfefficacy and quality of life, and were more physically active than patients with insufficient health literacy. According to study III, women reported higher illness coherence and higher emotional representations compared to men. The believed cause for one’s disease reported most often was smoking, followed by age, genetics and “no idea”. Patients with sufficient health literacy reported less consequences and lower emotional representations of the disease. They also reported higher self-efficacy and higher quality of life than patients with insufficient health literacy. Quality of life increased between baseline and 12 months, but there were no differences in self-efficacy. In study IV, the results showed a non-significant trend towards increased walking distance and an improved mean change in ankle-brachial index in the intervention group compared to the control group. Patients in the intervention group also had an improved quality of life between baseline and follow-up, and reported higher levels than in the control group, in which no improvement was found. The focus group interviews identified three major themes, focussed on describing a process whereby the usability factors of the application led to the feeling of having a helping hand which further worked as a promoter of self-care and control.Conclusion: Illness perception, health literacy and self-efficacy are factors influencing self-management in patients with IC and should be addressed to beable to improve adherence to secondary prevention. The positive results from the pilot study indicate that the web-based application might be beneficial for patients with IC in giving support to adherence to secondary prevention treatment and that a further study at a larger scale could be valuable.
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| 6. |
- Kumlien, Christine, et al.
(författare)
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Evaluation of self-management program outcomes: Adaptation and testing of a Swedish version of the Health Education Impact Questionnaire (heiQ)
- 2018
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Ingår i: Journal of Applied Measurement. - : JAM Press. - 1529-7713. ; 19:3, s. 303-319
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Tidskriftsartikel (refereegranskat)abstract
- Self-management programs require a range of indicators to evaluate their outcomes. The Health Education Impact Questionnaire (heiQ) was developed to meet this need. The heiQ contains 40 items with 4 response categories, representing eight scales. We developed a Swedish version of the heiQ that was tested by cognitive interviews (n=15) and psychometrically (n=177) using classical test theory (CTT) and Rasch measurement theory (RMT). The Swedish heiQ was easily understood by interviewees and met CTT criteria, with supported scaling assumptions (corrected item-total correlations, ≥0.37) and reliability (ordinal alpha ≥0.78). General support was demonstrated for the measurement properties of the eight heiQ scales by acceptable RMT fit. However, there were signs of malfunctioning response categories for four items in two scales, and of suboptimal item coverage of the measurement continua. The Swedish heiQ appears comparable to other available language versions. Further efforts may be needed to optimize response categories and measurement precision.
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