| 1. |
- Jutterström, Lena, 1965-
(författare)
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Illness integration, self-management and patient-centred support in type 2 diabetes
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Type 2 diabetes is a serious disease that is increasing globally. The focus of diabetes care has been to prevent diabetes related complications and thereby reduce mortality. An older population, the disease progression and decreased ability to perform self-management activities increases the risk for complications. Group education and patient-centred care are recommended to improve self-management through increased patient empowerment. Despite these recommendations, professionals have been reluctant to adopt these methods referring to lack of knowledge, time and tools to deliver patient-centred care in diabetes. Focusing on the patient’s illness integration process has in the literature been suggested to improve self-management and metabolic balance.Aim: The overall aim of the thesis was to describe the experiences of illness integration, self-management and support in type 2 diabetes and to evaluate the metabolic effects of a nurse-led patient-centred model for self-management support.Methods: The study setting was primary health care in Västerbotten County, Sweden. In total, 21 diabetes nurses (Study I) and 257 patients (Studies II-IV) participated in the four studies (Study II, n=44; Study III, n= 18; Study IV, n= 195). Data consisted of focus group interviews (Study I), individual semi-structured interviews (Studies II-III) and laboratory measurements (Study IV). Methods for analyses were qualitative content analysis (Studies I-III) and statistics (Study IV).Results: Study I revealed that diabetes nurses found the ideal diabetes care complex to achieve. Conflicting paradigms, power relations and departmentalisation of work were described. Study II describes a process whereby illness integration and self-management in type 2 diabetes develop simultaneously. When a turning-point occurs, people view self-management as both necessary and feasible. In study III, turning points in self-management are illuminated. Turning-point transitions include existential and emotional aspects that increase inner motivation and power for lifestyle change. Study IV evaluates the effects of a nurse-led intervention in which haemoglobin A1c (HbA1c) was significantly decreased at 12 months’ follow-up. Group intervention and individual intervention were both effective compared to traditional diabetes care.Conclusions: There is a potential for improvement of type 2 diabetes care. Increased patient-centredness is important to support patients towards illness integration and self-management. Focusing on the patients’ illness experiences, including the existential and emotional aspects of having and managing type 2 diabetes, in counselling can lead to improved self-management and glycaemic control. Patients’ experiences of illness are central to their inner motives for change, and patient-centred self-management support and patient education preferably emanate from this perspective.
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| 2. |
- Östlund, Ann-Sofi, 1974-
(författare)
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Motivational Interviewing in Primary Care : Nurses´ experiences and actual use of the method
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of the present thesis was to describe and examine primary care nurses´ self-reports on training, use and performance as well as experiences and actual performance of MI.Method: One qualitative and three quantitative studies were conducted among primary care nurses. A study-specific questionnaire was sent to 980 primary care nurses and 673 (69%) responded (Study I). Semi-structured interviews were conducted with 20 MI trained primary care nurses (Study II). MI sessions between 12 (Study III) respective 23 (Study IV) primary care nurses and patients (total 32 respective 50 sessions) were audio-recorded. Data were analyzed using qualitative content analysis, Motivational Interviewing Integrity Code, Motivational Interviewing Sequential Code for Observing Process Exchanges and statistical analysis.Results: The findings showed that primary care nurses reported and experienced lack of training in MI and lack of prerequisites for using MI (Study I-II), while training, knowledge, prerequisites and time were associated with use of MI. They also reported and experienced that MI facilitated their work with patients (Study I-II) as well as elicited their own ability to motivate and be empathetic (Study II). About half of the primary care nurses reported that they used MI (Study I), and none of the nurses (Study III) achieved the approved skill levels in MI in their recorded sessions. They overestimated their performance on six of eight aspects of MI (Study III). The most frequently used nurse talk in the recorded sessions was neutral, which is not consistent with MI. Questions and reflections directed toward change were most likely to be followed by change talk among patients (Study IV).Conclusions: Self-reported knowledge about MI and personal as well as workplace prerequisites for using it were associated with self-reported use of MI. Participating nurses´ experienced that MI requires openness, practice, support, feedback and willingness. The participating primary care nurses did not achieve approved levels of MI skills in their recorded MI sessions. Patients´ change talk is more likely to occur after open questions, complex reflections as well as after questions and reflections directed toward change.
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| 3. |
- Wennberg, Anna Lena, 1952-
(författare)
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Pregnant women and midwives are not in tune with each other about dietary counseling : studies in Swedish antenatal care
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background During pregnancy, a healthy diet is beneficial for the expecting mother and her fetus. Midwives in antenatal care have an ideal position for promoting a healthy diet and thereby help women to not only lower the risks of pregnancy complications and adverse birth outcomes, but improve maternal health. The overall aim of this thesis was to describe diet and dietary changes during pregnancy from the women’s and the midwives’ perspectives with a focus on dietary counseling. The thesis comprises four studies. The specific aims in the respective studies were to: I) Describe pregnant women’s attitudes to and experiences of dietary information and advice, as well as dietary management during pregnancy. II) Explore midwives’ strategies in challenging dietary counseling situations. III) Describe how midwives’ perceive their role and their significance in dietary counseling of pregnant women. IV) Describe women’s food habits during pregnancy and up to six months postpartum.Methods Studies I-III were qualitative. Study I included focus group interviews with 23 pregnant women. Study II included telephone interviews with 17 experienced midwives working in Swedish antenatal health care. Study III included the same 17 interviews from study II and supplemented them with four face-to-face-interviews. Qualitative content analysis was performed in all three studies. Study IV was a longitudinal study including a quantitative analysis of a questionnaire, which was given to women at five occasions during and after pregnancy. It concerned their food habits and it was answered by 163 women. The quantitative data was analyzed using comparative and descriptive statistics.Results The overall findings of the thesis were summarized as the main theme “Pregnant women and midwives are not in tune with each other about dietary counseling”. The main theme included the two themes ‘Pregnant women are concerned about risks for their child but fail to change to healthier dietary habits over time’, and ‘Midwives view themselves as authorities, though questioned ones’. In subthemes it was highlighted that pregnant women are well informed and interested in risk reduction for their child’s best and that they try to do their best to improve their diet during pregnancy. However, their diet did not reach levels of healthy eating recommendations and became even unhealthier after pregnancy. It was also highlighted that midwives experienced insufficient knowledge in dietary issues and related risks and that they had difficulties to give dietary support to pregnant women. Midwives were found to mainly focus on giving information and they lacked sufficient competence for challenging counseling.Conclusion Pregnant women, on the one hand, experience a lack of support from the midwives when dealing with dietary changes. The midwives, on the other hand, feel exposed and express a need for both further education in dietary issues and training in counseling. Women’s food habits during, but in particular after pregnancy need improvement, and dietary counseling could be more focused on healthy eating in a long-term perspective.
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| 4. |
- Holmlund, Lena, 1967-
(författare)
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Patients’ experiences of atrial fibrillation and an evaluation of a nurse-led person-centred clinic
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Living with and managing atrial fibrillation (AF) can be complex. Some people have no symptoms, while others have a significant symptom burden. Health-related quality of life (HRQoL) is often low and partly associated with symptom burden. However, the impact of the condition on daily life differs between those affected and is not fully understood. Therefore, more knowledge is needed about patients’ experiences of AF and factors influencing HRQoL. Research indicates that the care of patients with AF needs to change and be more based on personal preferences and values.Aim: The overall aim of this thesis was to explore patients’ experiences of AF and to evaluate the effects of a nurse-led, person-centred clinic.Methods: The thesis contains four studies. Study I was based on interviews with 15 patients about their experiences of living with symptomatic AF. Studies II and III were based on data from questionnaires completed before and 6 months after scheduled electrical cardioversion. Study II was a cross-sectional study with 52 women and 115 men describing illness perceptions and HRQoL and exploring their relationship. Study III was a longitudinal study comparing 53 newly diagnosed (<6 months) and 76 previously diagnosed patients with AF (≥6 months) regarding HRQoL, illness perceptions, symptoms, symptom burden, anxiety and depression. Study IV was a randomised controlled trial evaluating the effects of a nurse-led, person-centred clinic on patient-reported outcomes measures in patients with AF. Patients were randomly assigned to a nurse-led intervention group (n=50) or a control group with a physician visit (n=53) and completed questionnaires on the same subjects as in Study III at baseline before the visit to the clinic and 6 months after. Study I were analysed with qualitative content analysis. The other studies are quantitative and were analysed with descriptive statistics (Studies II–IV), comparative statistics (Studies II–IV), and correlation analysis and multiple linear regression analysis (Study II).Results: In Study I, three themes (striving for illness control, becoming a receiver or an active partner in care, and dealing with a changed self-image) were reflected in the main theme, balancing life. The participants described their struggles in understanding AF, preventing recurrence and managing anxiety. Some were not involved in decision-making, lacked continuity of care, felt that most information focused on medical issues and requested more support and self-care advice. Study II showed that HRQoL was related to and negatively affected by attributing more symptoms, severe consequences, and negative emotions (e.g., anxiety, anger) to AF and perceiving AF as recurrent. Women reported worse HRQoL and lower personal control than men. Study III showed that newly diagnosed (vs. previously diagnosed) patients at baseline reported AF as a more temporary condition to a greater extent and had stronger belief that the illness was controllable. After 6 months, newly diagnosed patients reported better HRQoL, higher personal control, and lower symptom burden than previously diagnosed patients. Over time, HRQoL improved and AF symptom burden and symptoms of anxiety decreased in newly diagnosed patients, who viewed the illness as chronic to a greater extent than at baseline. Study IV showed that, in the nurse-led intervention group, the patients’ negative emotions towards AF decreased more than in the control group. In addition, their concerns regarding AF decreased and their personal control increased. In both groups, HRQoL and patients’ understanding of AF improved.Conclusions: This thesis demonstrates that for many, AF meant a change in life in which they had to manage anxiety and symptoms and oscillate between being strong and weak and a changed self-image. Men (vs. women) and newly diagnosed (vs. previously diagnosed) patients reported more positive outcomes, such as better HRQoL and greater belief in their ability to control AF. Worse HRQoL was associated with negative illness perceptions, such as more perceived recurrences, symptoms, severe consequences, and negative emotions. The findings in Study IV suggest that the support from a nurse-led person-centred clinic may reduce patients’ negative emotions and concerns attributed to AF and improve their personal control.
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| 5. |
- Schimmer, Robyn, Doktorand, 1979-
(författare)
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Between health and healthcare : a lifeworld perspective on personal informatics
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis explores the role of technology in digitized life focusing on lived experiences of personal informatics technologies in health and healthcare contexts. The work departs from an interest in how digital technologies affects us as individuals in contemporary life. The use personal informatics and self-tracking technologies are explored both in everyday and healthcare contexts. These technologies are used to support self-monitoring and behavioral change, both to improve general health and for patients with chronic illness. In the thesis, personal informatics technologies are studied in the contextual transition between health to healthcare with the purpose of providing a deeper understanding of how these particular kinds of digital devices affect human experience in everyday life.This research is based on four empirical studies addressing different aspects of how personal informatics technologies redefine the understanding of self at the intersection between health and healthcare contexts. Data was analysed in two steps: an inductive analysis followed by a deductive analysis based on a postphenomenological framework. Findings from the inductive analysis give support for the existing critique of personal informatics being too much concerned with metrics, behaviour and a simplified understanding of self. Applying a postphenomenological framework to the empirical material demonstrates how personal informatics technologies mediates experiences of self, health and healthcare. The analysis also reveals the bidirectional nature of technological mediation making particular experiences foregrounded and more accessible, while downplaying other experiences as less visible and accessible. This lifeworld perspective opens up for understanding the lived experiences of personal informatics technologies in everyday life. This is a contribution to understanding the role of technology in digitized life. It is also a contribution to user experience design as the lifeworld perspective opens up several design challenges concerning how design of personal informatics can shift its focus from the user to the everyday life of a person.The design challenges found in this thesis are closely related to fields such as norm-critical design, norm-creative design and speculative design, aspiring beyond normative understandings of technology use and design. The postphenomenological analysis suggest four dimensions for further scrutiny in health and healthcare contexts. The dimensions are ontological, epistemological, practical and ethical. For each of these dimensions there are bidirectional aspects that can be used in order to deliberate on implications for design. It is about what is revealed and concealed, what is magnified and reduced, what is enabled and constrained and finally what involves and alienates when people engage with personal informatics technologies. The thesis concludes that the lifeworld perspective on personal informatics, including the postphenomenological analytical framework, supports further critical examinations of the role of technology in digitized life.
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| 6. |
- Sjöström, Anna, 1979-
(författare)
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eHealth literacy and internet use for health information : a study in Swedish primary healthcare
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Primary healthcare (PHC) is facing significant challenges in Sweden and around the world. One way to address such challenges is through health-related Internet information (HRII) and other eHealth services, which are resources for high-quality, accessible and cost-effective care. Such resources have been found to assist in improving individual health, especially for people with chronic conditions such as type 2 diabetes. More specifically, eHealth services may play an important role in increasing patients’ knowledge, engagement and autonomy in health management, as well as enhancing their self-care practices. However, patients must have adequate capabilities – collectively known as eHealth literacy (eHL) – in order to use eHealth services effectively. Aim: The overall aim of this thesis was to explore eHL and HRII use in the context of Swedish PHC. Methods: Data collection for paper I was conducted through individual interviews with PHNs, which were then analysed using qualitative content analysis. Paper II involved patients with type 2 diabetes who were interviewed individually or responded to open-ended survey questions; the data were analysed using thematic analysis. In paper III, which was a translation and validation study, the data consisted of cognitive interviews and questionnaires predominantly answered by PHC visitors, and employed psychometric analysis methods. The same data from PHC visitors were used in paper IV, in which descriptive and comparative statistics and logistic regression analyses were employed. Results: In paper I, the interviewed PHNs expressed mixed feelings regarding consultations with Internet-informed patients. While they recognised benefits such as increased patient engagement and the support of self-care, their responses focused on the challenges they encountered. These challenges included patient confusion and unwarranted anxiety stemming from HRII, as well as conflicted, time-consuming and unnecessary healthcare consultations. In paper II, patients with type 2 diabetes outlined their challenges associated with online COVID-19 information, which encompassed information overload, conflicting content and notable emotional impact. They described employing diverse coping strategies to address these challenges, including restricting their information consumption, relying on authoritative sources, actively evaluating source credibility, engaging in discussions with others and applying common sense. In paper III, the eHealth Literacy Questionnaire (eHLQ) was translated and culturally adapted to assess eHL in a Swedish context. The Swedish version of the eHLQ was found to demonstrate robust psychometric properties. In paper IV, it was determined that older age groups (>60) were assessed with lower eHL in several eHLQ domains, including those regarding motivation and ability to use HRII and digital technology. In addition, older age groups reported that eHealth services did not suit their individual needs. Variables that were found to be independently associated with lower eHL across several domains were advanced age and the perception that HRII was not useful or important. Conclusion: Both the patients and PHNs in this thesis encountered challenges related to patients’ acquisition of HRII and utilisation of eHealth services. A collective and important objective for healthcare professionals and authorities should be to facilitate patients’ HRII and eHealth service usage. Therefore, PHNs and other healthcare professionals should actively encourage open discussions with patients about the latter’s HRII findings, recommend credible websites, explore potential barriers to patients’ eHealth usage, motivate patients to use eHealth services and suggest ways for patients to enhance their eHL. Healthcare authorities and eHealth developers are suggested to increasingly involve end-users in the development of eHealth services and provide opportunities for customisation based on individual needs.
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| 7. |
- Öberg, Ulrika, 1969-
(författare)
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Finding a common ground : a pilot implementation of digital self-managment support in Swedish primary health care
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Due to an ageing, multi-diseased population, type 2 diabetes (T2D) and other chronic conditions pose a challenge for primary healthcare. To meet such challenges, primary healthcare nurses must adapt to new roles and acquire new skills regarding self-management support. eHealth and digital solutions are suggested to facilitate the increasing need for care in chronic conditions. However, how these solutions are experienced among users has not yet been sufficiently explored. To successful implement new working methods in primary healthcare, it is important to identify prerequisites and barriers that exists.Aim: The overall aim of this thesis was to explore perceptions among primary healthcare nurses and patients about digital self-management support in T2D and also to develop and evaluate a digital screening instrument assessing individual needs for self-management support. This thesis is based on four papers. Papers I and II aimed to describe perceptions among primary healthcare nurses and persons with T2D of using eHealth services for self-management support. Paper III aimed to develop and psychometrically test a screening instrument for person-centred guidance and self-management support. Paper IV aimed to describe diabetes specialist nurses’ experiences of a pilot implementation of the instrument labelled the Self-Management Assessment Scale (SMASc) as a basis for person-centred digital self-management support.Methods: A combined approach was used to collect and analyse data. Data in the qualitative studies were collected by means of focus group interviews (I) and individual interviews (II, IV) as well as participant observations (IV) were analysed using qualitative content analysis (I, II, IV). Quantitative data in study III were psychometrically tested. The participants in the respective studies were in Paper I primary healthcare nurses (n = 24), in Papers II and III persons with T2D (n = 11; n = 104) and in Paper IV diabetes specialist nurses (n = 5) and persons with T2D (n = 14). All data were collected in a county in northern Sweden.Results: The overall results constituted a web of mixed experiences and feelings towards using digital self-management support. Primary healthcare nurses pronounced their ambivalence towards the digital development in healthcare (I). Patients as well had mixed feelings, but they also pronounced benefits and potentials leading to increased involvement and empowerment (II). The psychometric assessment of the screening instrument, SMASc, demonstrated high potential and promising results for clinical assessments on factors affecting self-management behaviours (III). Preliminary results suggest that the SMASc instrument is considered suitable for screening of patients’ needs for self-management support (IV). Conclusion: The results of this thesis suggest that digitalization needs stepwise implementation. Digital tools such as the SMASc instrument can be useful in facilitating identification of patients in need of targeted interventions. However, primary healthcare nurses must be open to discussing patients’ emotional adaptation to the disease as well as the knowledge, sometimes not evidence based, the patients may have obtained from Internet sources. Targeted self-management support including person-centred guidance is suggested to be an effective way to achieve patient.
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