| 1. |
- Christiansen, Mats, 1972-
(författare)
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Patient experiences and the influence on health literacy and self-care using mHealth to manage symptoms during radiotherapy for prostate cancer
- 2019
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Prostate cancer is a diagnosis that can affect the men’s quality of life both due to the symptoms related to the disease and the treatment the men receive. Treatment with radiotherapy for prostate cancer in Sweden takes place at outpatient clinics, where the patient visits daily for radiotherapy and then returns home. Most of the time the patient is experiencing the symptoms and side-effects at home without health-care professionals easily accessible. To facilitate person-centered care and improve clinical management when hospital care is moving to outpatient care, the app (Interaktor) for smartphones and tablets was developed. Using patient-reported outcomes (PRO), the app was intended to identify symptoms early, assess them in real time, and provide symptom-management support during radiotherapy for prostate cancer. Aims: The overall objective of the intervention described in this thesis, was to facilitate symptom management for patients with prostate cancer assisted with an interactive app during radiotherapy treatment.Methods: The two studies included in this thesis come from one trial. A descriptive investigation evaluated the intervention group’s use and perception of the using the app, and a quasi-experimental investigation compared those using the app with a historical control group not using the app to evaluate the effect on health literacy and self-care agency. The patients (n=130) were recruited consecutively from two university hospitals in Sweden between April 2012 and October 2013. The intervention group (n=66) had access to the app during 5-7 weeks of radiotherapy and three additional weeks. The intervention group’s use of the app was logged. Health literacy was measured using the Swedish Functional Health Literacy Scale (FHL) and the Swedish Communicative and Critical Health Literacy Scale (CCHL), and the Appraisal of Self-care Agency scale, version A (patient’s assessment) (ASA-A) for self-care agency. Transcribed notes from phone or face-to-face interviews about participants’ experiences of using and reporting in the app were analyzed.Results: In the intervention group using the app, adherence to daily reports was 87% (Md 92%, 16-100%), and generated 3,536 reports. All listed symptoms were used, where the most common being: urinary urgency, fatigue, hot flushes, and difficulties in urinating. A total of 1,566 alerts were generated, with 1/3 being severe (red alert). The app was reported in the interviews as easy to use, the reporting became routine; to report facilitated reflection over symptoms, the symptoms were relevant although some found that nuancing severity was hard. Using the app was reported as providing a sense of security. Substantial portions of the participants showed inadequate FHL and CCHL at baseline for both groups. CCHL changed significantly for the intervention group from baseline to three months after ended treatment (p = 0.050). Functional health literacy and self-care agency did not reveal any statistically significant differences over time for either group. Conclusions: The conclusions to draw from this thesis are that an mHealth intervention, the app Interaktor, served as a supportive tool for the patients to assess and manage symptoms during the radiotherapy for prostate cancer. The intervention provided the patients with a sense of safety, increased awareness of own well-being and a significant improvement in communicative and critical health literacy was found. The portions of inadequate levels of health literacy reported leave substantial groups of patients more vulnerable in assessing and managing symptoms when treated with radiotherapy for prostate cancer. Although health literacy levels include notable portions of patients in this study that have inadequate levels of both functional and communicative and critical health literacy, the adherence of using the app was high.
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| 2. |
- Mattsson, Susanne, 1978-
(författare)
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Health-related Internet use and screening for emotional distress in people with cancer
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to investigate the preferences and incentives for using Internet-delivered support among people with cancer and to develop and test a generic questionnaire measuring health-related Internet use, the Health Online Support Questionnaire (HOSQ). Another aim was to examine the psychometric properties of the online-administered Hospital Anxiety and Depression Scale (HADS) and Visual Analogue Scale (VAS) regarding anxiety and depression in psychosocial screening among people with cancer, in comparisons with the longer instruments Montgomery Åsberg Depression Rating Scale – Self-report (MADRS-S) and the State Trait Anxiety Inventory – State (STAI-S).Study I was a correlational and descriptive study on the development and psychometric properties of the HOSQ. Study II was a cross-sectional and descriptive study on health related Internet use in patients with cancer. Study III was a cross-sectional and descriptive study examining preferences for psychological treatments. Study IV was a psychometric comparison study of two short instruments and two longer instruments measuring anxiety and depression.Findings from study I showed that the HOSQ might be a reliable and valid instrument for measuring the use of online support for people with health problems. Results ought to be replicated though in larger and other groups to confirm the results for different diagnoses. Findings from study II confirmed results from other studies showing that people with cancer turn to the Internet for informational support that enables them to influence their care and to stay in touch with friends and relatives. Demographical differences regarding the uptake of Internet-based support remains, which indicates a need for research on how to bridge this digital gap. In study III, we found that a large majority preferred psychological treatment face to face whereas Internet-based interventions were reported as the preferred choice by a minority. Findings from the content analysis suggest that Internet-based interventions have specific advantages that may facilitate help-seeking among some individuals and some disadvantages that may be perceived as barriers. Initiatives to increase treatment acceptability may benefit from addressing the advantages and disadvantages reported in this study. In study IV we found that the use of the short and ultrashort tools HADS and VAS identified anxiety and depression in patients with cancer with high accuracy in comparisons with the longer instruments.In conclusion, online screening with the HADS and VAS may be a suitable initial method to identify anxiety and depression in patients with cancer. There is still a large proportion of patients who lack the interest or eHealth literacy to use health-related support on the Internet. By learning more about the barriers, use and perception of eHealth and Internet-based interventions, adequate support may be offered.
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| 3. |
- Pettersson, Mona
(författare)
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COMPETENCE AND COMMUNICATION : Do Not Resuscitate Decisions in Cancer Care
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Within cancer care, do not resuscitate (DNR) decisions are frequently made. DNR decisions can be ethically difficult and lead to conflicts of interest and disagreements within the medical team. This thesis brings together empirical knowledge of DNR decisions in cancer care and theoretical discussions on the ethical aspects and the competence needed to make such decisions.The overall aim of this project was to investigate the clinical and ethical aspects of DNR decisions from the perspectives of nurses and physicians working in hematology and oncology care. The methods used were qualitative, with individual interviews, and quantitative, using a web survey. Ethical theories, principles and models were used in the planning of the studies and to explain and discuss the results.Fifteen nurses in Study I expressed a close relationship with their patients. They expressed how they needed clear and well-documented decisions on DNR to provide good care to patient and relatives. Sixteen physicians participated in Study II. They described how they made decisions on DNR mainly on medical grounds, but reflected on ethical aspects of the decision, weighing maleficence and beneficence. In Study III, the interviews from Study I and II were analyzed from the perspective of ethical competence. The results showed that physicians and nurses were able to reflect on their ethical competence in relation to DNR decisions and described ethical competence as both being good and doing right. Also knowledge in ethics was emphasized. In Study IV, 216 nurses and physicians participated. Most respondents thought it was important for patients and relatives to participate in, and be informed about, a DNR decision, but fewer thought that this was likely to happen. Nurses rated the importance higher than physicians did. The most important attributes in relation to DNR decisions for both nurses and physicians pertained more to medical viewpoints than to ethical values.DNR decisions in cancer care can be associated with ethical conflicts of interest, and nurses and physicians have different perspective of DNR decisions which they need to share. Competence in ethics and inter-professional communication are crucial for nurses and physicians participating in such decisions.
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| 4. |
- Johansson Niemelä, Birgitta, 1948-
(författare)
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Mental Health in Children Undergoing Reconstructive Surgery : Studies on Self-Esteem and Social Interaction
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- While the functional and anatomical aspects of reconstructive surgery in children with leg length inequality (LLI), prominent ears (PE) and cleft lip and palate (CLP) have been studied in detail, the psychological aspects of surgery have been less explored. The benefit of a changed appearance and function on self-esteem and ability to social interaction are other areas where information is lacking. The aim of this thesis is to examine, during the process of reconstructive surgery, the mental health, self-esteem and social interaction of children with defects in appearance and function.Children, aged 6-16 years, with LLI (n=27) and PE (n=31) were invited to participate in interviews and psychological assessments by filling in a battery of questionnaires and tests (depression; anxiety; self-esteem; cognitive ability; and behaviour) before Ilizarov and otoplasty surgery and one year after. Parents filled in a child symptom check list and a state and trait anxiety questionnaire. Another six adolescents with CLP and their parents participated in interactive interviews with the aim of identifying relevant psychological issues for individuals with this condition. These issues were subsequently used to create new questionnaires. Being different, the development of self-esteem and social interaction were the central themes of the questionnaires designed after the interview study. The new questionnaires were explored in a retrospective study on other adolescents (n=26) with CL/P and their parents. Beck’s Youth Inventories (BYI) was used as comparative data.The LLI group had significantly lower mental health and self-esteem scores than the control group before surgery. The leisure activity level in both patient groups was low according to parents’ report before surgery. The mental health scores of both patient groups (LLI and PE) were improved after reconstructive surgery, but self-esteem was not affected. The questionnaires for CL/P patients proved to be useful in the exploration of self-esteem from a developmental perspective and in the search for strengthening factors of social interaction. Self-esteem was average or high on group level for adolescents with CL/P compared to BYI measure. Parents rated their adolescents to have higher self-esteem than the adolescents themselves. Females had a less positive development of self-esteem, there was an interaction effect between the female and male patients’ evaluation of self-esteem by higher age. Even a minor appearance defect like PE may affect mental health negatively. There were no adverse psychological effects one year after surgery in LLI and PE patients, rather, there were signs of improved mental health. Adolescents with CL/P have an anticipated risk of more mental health problems and especially those individuals who have been bullied. Cleft teams and Child and Adolescent Psychiatric Clinics should be attentive and offer psychological support to those individuals most affected by their conditions.
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| 5. |
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| 6. |
- Angelin, Martin, 1976-
(författare)
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Travel – a risk factor for disease and spread of antibiotic resistance
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- As international travel is rapidly increasing, more people are being exposed to potentially more antibiotic resistant bacteria, a changed infectious disease epidemiology, and an increased risk of accidents and crime. Research-based advice is needed to adequately inform travellers about these risks. We studied travellers who sought advice from the Travel Medicine Clinic at the Department of Infectious Diseases, Umeå University Hospital, as well as university students from Umeå, Stockholm, and Gothenburg travelling abroad for study, research, and clinical exchange programs.From retrospective data at the Travel Medicine Clinic, we found that pre-existing health problems were rare among travellers from Umeå seeking pre- travel health advice and vaccinations. In addition, we found that the travel destination and the sex of the traveller affected vaccination levels. Although hepatitis A is endemic to both Thailand and Turkey, compared to travellers to Thailand few travellers to Turkey visited the clinic for hepatitis A vaccination. The data also revealed that more women than men were vaccinated against Japanese encephalitis despite comparable trips.A prospective survey study showed that travellers felt that the pre-travel health advice they received was helpful. Two-thirds of the travellers followed the advice given although they still fell ill to the same extent as those who were not compliant with the advice. Factors outside the control of travellers likely affect the travel-related morbidity. Compared to older travellers, younger travellers were less compliant with advice, fell ill to a greater extent, and took greater risks during travel.In a prospective survey study, we found that healthcare students had higher illness rates and risk exposure when abroad compared to students from other disciplines. This difference was mainly due to the fact that healthcare students more often travelled to developing regions during their study period abroad. When abroad, half of all students increased their alcohol consumption and this was linked to an increased risk of theft and higher likelihood of meeting a new sex partner.The healthcare students participating in the survey study also submitted stool samples before and after travel. These samples were tested for the presence of antibiotic resistance, both by selective culturing for ESBL-PE (Extended-Spectrum Beta-Lactamase Producing Enterobacteriaceae) as well as by metagenomic sequencing. About one-third (35%) of the students became colonised by ESBL-PE following their study abroad. The strongest risk factor for colonisation was travel destination; for example, 70% of students who had travelled to India became colonised. Antibiotic treatment during travel was also a significant risk factor for colonisation.The stool samples from a subset of study subjects were analysed using metagenomic sequencing. From this we learned that although the majority of resistance genes in the gut microbiome remained unchanged following travel, several clinically important resistance genes increased, most prominently genes encoding resistance to sulphonamide, trimethoprim, and beta-lactams. Overall, taxonomic changes associated with travel were small but the proportion of Proteobacteria, which includes several clinically important bacteria (e.g., Enterobacteriaceae), increased in a majority of the study subjects.Clearly, there are risks associated with international travel and these risks include outside factors as well as the personal behaviour of travellers. We believe our results can be used to develop better pre-travel advice for tourists as well as university students studying abroad resulting in safer travel.
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| 7. |
- Bernhardsson, Susanne, 1958-
(författare)
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Advancing evidence-based practice in primary care physiotherapy : Guideline implementation, clinical practice, and patient preferences
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Research on physiotherapy treatment interventions has increased dramatically in the past 25 years and it is a challenge to transfer research findings into clinical practice, so that patients benefit from effective treatment. Development of clinical practice guidelines is a potentially useful strategy to implement research evidence into practice. However, the impact of guideline implementation in Swedish primary care physiotherapy is unknown. To achieve evidence-based practice (EBP), research evidence should be integrated with clinical expertise and patient preferences, but knowledge is limited about these factors in Swedish primary care physiotherapy.The overall aim of this thesis was to increase understanding of factors of importance for the implementation of EBP in Swedish primary care physiotherapy. Specific aims were: to translate and adapt a questionnaire for the measurement of EBP and guidelines; to investigate physiotherapists’ attitudes, knowledge and behaviour related to EBP and guidelines; to examine clinical practice patterns; to evaluate the effects of a tailored guideline implementation strategy; and to explore patients’ preferences for physiotherapy.The thesis comprises four studies (A-D), reported in five papers. In Study A, a questionnaire for the measurement of EBP and guidelines was translated, cross-culturally adapted, and tested for validity (n=10) and reliability (n=42). Study B was a cross-sectional study in which this questionnaire was used to survey primary care physiotherapists in the county council Region Västra Götaland (n=271). In Study C, a strategy for the implementation of guidelines was developed and evaluated, using the same questionnaire (n=271 at baseline, n=256 at follow-up), in a prospective controlled trial. The strategy was based on an implementation model, was tailored to address the determinants of guideline use identified in Study B, and comprised several components including an educational seminar. Study D was an exploratory qualitative study of patients with musculoskeletal disorders (n=20), using qualitative content analysis.The validity and reliability of the questionnaire was found to be satisfactory. Most physiotherapists have a positive regard for EBP and guidelines, although these attitudes are not fully reflected in the reported use of guidelines. The most important determinants of guideline use were considering guidelines important to facilitate practice and knowing how to integrate patient preferences with guidelines. The tailored, multi-component guideline implementation significantly affected awareness of, knowledge of, and access to guidelines. Use of guidelines was significantly affected among those who attended an implementation seminar. Clinical practice for common musculoskeletal conditions included interventions supported by evidence of various strengths as well as interventions with insufficient research evidence. The most frequently reported interventions were advice and exercise therapy. The interviewed patients expressed trust and confidence in the professionalism of physiotherapists and in the therapists’ ability to choose appropriate treatment, rendering treatment preferences subordinate. This trust seemed to foster active engagement in their physiotherapy.In conclusion: The adapted questionnaire can be used to reliably measure EBP in physiotherapy. The positive attitudes found do not necessarily translate to guideline use, due to several perceived barriers. The tailored guideline implementation strategy used can be effective to reduce barriers and contribute to increased use of guidelines. The clinical practice patterns identified suggest that physiotherapists rely both on research evidence and their clinical expertise when choosing treatment methods. Patients’ trust in their physiotherapist’s competence and preference for active engagement in their therapy need to be embraced by the clinician and, together with the therapist’s clinical expertise, integrated with guideline use in the clinical decision making. Further research is needed on how the EBP components and different knowledge sources can be integrated in physiotherapy practice, as well as on implementation effects on patient outcomes.
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| 8. |
- Forslund, Marina
(författare)
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A nutrition intervention in men with prostate cancer : Exploring effects on bowel symptoms from radiotherapy, patient experience, and nutrient intake
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Objective The main objective of this thesis was to explore the effects of a nutrition intervention on acute and late bowel symptoms in men with localised prostate cancer treated with pelvic radiotherapy (study I), participants’ experiences from receiving the nutrition intervention (study II), and associations with nutrient intakes (study III).Methods A total of 180 men with localised prostate cancer referred to curative radiotherapy targeting the prostate gland and pelvic lymph nodes were recruited to the trial. The participants were randomised to standard care plus a nutrition intervention aiming to modify fibre and lactose intakes (NIG; n=92) or standard care alone (SCG; n=88). Data on bowel symptoms and dietary intake were collected pre-treatment and at seven time points during a 26-month study period. Analyses of the effects of the nutrition intervention on bowel symptoms were conducted for the acute phase (up to 2 months post radiotherapy), and the late phase (7 to 24 months post radiotherapy). Semi-structured interviews were conducted with 15 participants from the NIG to explore experiences of the nutrition intervention.Results The nutrition intervention was associated with statistically significantly, but not clinically significantly, less bother from blood in stools and flatulence during the acute phase. The nutrition intervention was also associated with more bloated abdomen during the late phase (Study I). Social support, contributing to the greater good, prior knowledge, dietary information, and a small need for change facilitated adherence. While feeling limited, wanting to decide for themselves, the timing of the intervention, unmet expectations, and loss of motivation were described as barriers for adherence (Study II). A greater reduction of lactose was associated with decreased intake of calcium at the end of the radiotherapy period. A more modified fibre intake during the radiotherapy period was associated with increased vitamin C, but decreased selenium intake (Study III).Conclusions The effects from the nutrition intervention were small and inconclusive and do not support routine dietary advice aiming to modify fibre and lactose intakes as a mean to substantially reduce adverse effects from pelvic radiotherapy. Tailored nutritional interventions based on individual preferences, prior knowledge, and context, could enhance adherence. There were few associations between modified fibre and lactose intakes and nutrient intakes, thus, no recommendations can be made on whether such dietary advice should continue to be provided to men with prostate cancer undergoing pelvic radiotherapy.
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| 9. |
- Hällström, Catharina, 1953-
(författare)
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Insändare i Kamratposten : Uttryck för villkor i barns kulturella sammanhang
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis is to elevate children's conditions as they are expressed in the specific genre of letters to the editor column. The empirical material consists of 1054 child writer contributions in the children's magazine 'Kamratposten' 1977-2007. In the thesis the letters to the editor column is considered to constitute a social place wherein a meeting occurs between ideas, norms and values from children's culture and culture for children, creating conditions for how the children writers express themselves. It concerns conditions the children experience, interpret and reproduce from their daily lives, as well as conditions formed by different editors in a magazine for children. Drawing on a theoretical framework of semiotics and culture pedagogy in combination with a methodological approach of hermeneutics and abduction, the concepts 'develomental task' and 'affordance' were initially used to interpret data. During the interpreting process two main phenomena have been conceptualised as prominent conditions in children's everyday life: Belonging and Place. The abductive method used in the study revealed how the dialectics of belonging and place as conditional phenomena create feelings of discomfort, as well as feelings of pleasure. The results show that these feelings are mainly due to a sense of belonging in families, peer groups and romantic relations. The results also illustrate that belonging and place concerns more than being part of different social and cultural settings. It concerns feelings of real participation and involvment, of taking part, in family life and social interaction with peers, girlfriends and boyfriends. The children's written contributions reveal that belonging and place are issues of vital democratic quality in their daily life and world.
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| 10. |
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| 11. |
- Olausson, Kristina, 1972-
(författare)
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Patient experiences of the radiotherapy process and treatment
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- BackgroundMost cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory. RT is often associated with unfamiliar procedures where the technical environment, side effects and interaction with staff seem to play a major role in the patient’s treatment experience. These experiences could sometimes lead to disruption of the treatment which may have negative consequences for the outcome. The overall aim of this thesis was to gain further knowledge about how patients experience RT and the related processes. Such knowledge is of vital importance when developing and improving care within a high-tech RT environment.AimThe overall aim of this thesis was to gain further knowledge about how patients experience RT and the related processes. Such knowledge is of vital importance when developing and improving care within a high-tech RT environment.MethodsTo gain further knowledge and understanding about patients experience of RT both quantitative (I, II, III) and qualitative (III, IV) methodology were used. The data in the thesis focused on patients undergoing external RT at different RT units in Sweden. Study I and II, focused on two regions, the northern region of Sweden and the region of Stockholm and Gotland. Study III and IV were performed at eight different RT units in Sweden.ResultsIn Study I, two types of topical agents (Calendula Weleda cream vs. Essex cream) were compared regarding reducing the risk of severe acute radiation skin reactions (ARSR). No difference in severe ARSR was found between the groups and the patients reported low levels of ARSR. In Study II, the influence of an RT unit’s psychosocial climate and treatment environment on cancer patients’ anxiety during external RT was evaluated. Data was collected (questionnaire) from 892 patients. The results showed that both the treatment environment and the psychosocial climate of the RT unit significantly impacted cancer patient anxiety levels. In Study III & IV, a questionnaire to measure the patient´s experience during external RT was developed and tested. The results showed that the RT Experience Questionnaire (RTEQ), with 23 items, was a tentatively valid and reliable instrument to measure how patients experience the RT process and the environment in the treatment room. In Study IV, written comments from the open-ended question “Is there anything else you want us to know?” in the preliminary RTEQ was analysed with qualitative content analysis. This data was abstracted into the following four major categories reflecting the experience of the RT process: Experiences in the high tech RT environment; Understanding the RT procedures and side effects; Dealing with daily life during RT and The nurses’ role and performance.ConclusionThe RT environment and the RT related processes seem to impact cancer patients, both physically and psychologically. A person-centered care approach, as well as attention to the design, both of the treatment process and the physical environment could significantly improve the patient experience and patient involvement. The results also highlight the importance of taking patient experiences into account when introducing new RT methods and techniques.
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| 12. |
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