<p><strong>Syfte: </strong>Syftet har varit att beskriva hur patienter uppfattar begreppet egenvård samt deras uppfattningar gällande information om egenvård.</p><p><strong>Metod: </strong>Empirisk studie med kvalitativ design. Strategiskt urval av åtta patienter som genomgått stamcellstransplantation. Datainsamling skedde genom semistrukturerade intervjuer.</p><p><strong>Resultat: </strong>Patienter uppfattar att egenvård är att ta hand om sig så att den egna fysiska samt psykiska hälsan främjas, utan inblandning av sjukvården. De flesta patienter uppfattade att informationen om egenvård hade varit tillfredsställande. Dock förekom svårigheter med att koppla ihop begreppet egenvård med den information som givits om egenvårdande åtgärder. Ett fåtal av informanterna ansåg att informationen om egenvård hade varit av bristande kvalitet. Informanter upplevde svårigheter med att tillgodogöra sig informationen om egenvård. Kontinuerlig och upprepad information upplevdes som positivt. Personalens tillgänglighet samt möjlighet att ta sig tid värderades högt. Majoriteten av de intervjuade saknade ingen information om egenvård men däremot en förklaring av vad själva begreppet egenvård betyder.</p><p><strong>Slutsats:</strong> På hematologkliniken används inte begreppet egenvård när information om egenvård ges till patienter. Därmed finns det ett behov av att definiera och tydliggöra vad begreppet egenvård innebär. Patienter värderar personalens tillgänglighet samt förmåga att ge individanpassad och upprepad information högt, eftersom det ökar förmågan att tillgodogöra sig informationen om egenvård.</p> / <p><strong>Aim:</strong> The aim was to describe how patients perceive the concept of self-care and their perceptions concerning self-care information. <strong> </strong></p><p><strong>Method:</strong> Empirical study of qualitative design. Eight patients undergoing stem cell transplantation was strategically selected.  Semi-structured interviews were used. <strong></strong></p><p><strong>Results: </strong>Patients perceive that self-care is to take care of oneself in order to promote physical and mental health, without involvement of health care. Most patients felt that the need of self-care information had been content. Patients had difficulties in linking the concept of self-care with the information that had been given about self-care interventions. A few informants felt that the self-care information had been unsatisfactory. Informants experienced difficulties in assimilating the information. Continuous and repeated information was appreciated. The staff´s availability and  willingness to take time for the patient were valued highly. The majority of the interviewees did not lack any self-care information but were in need of an explanation of what the concept of self-care means.</p><p><strong>Conclusion:</strong> The term self-care is not used when information about self-care is given. The concept of self-care needs to be defined. Staff availability and the ability to provide personalized and repeated information is appreciated, because it increases the ability to assimilate information about self-care.</p><p><strong></strong></p>

Education for teenagers with diabetes has had limited effects to date, especially regarding metabolic control. The development had been towards more patient-centred approaches, like empowerment, motivational interviews and family behavioural programmes. A patient-centred approach means that the patient is expected to take control of the management of the disease. The empowerment approach has been implemented in adults with diabetes, with some positive results. The aims of this thesis were to evaluate empowerment group education and education in a camp setting, and to validate the “Check your health” instrument which can be used to assess the effects of such education programmes on perceived health and the burden of diabetes. Thirty-two teenagers between 12 and 17 years of age were randomized to either an intervention group or a wait-listed control group. The intervention consisted of six group sessions with an empowerment approach as the theoretical frame. Thirty-one of the teenagers were interviewed two weeks after the empowerment education programme was completed. The programme did not have any positive effect on metabolic control between-groups, but within groups HbA1c and readiness to change increased. According to the definition of empowerment, which pinpoints decision-making, the interviews were analysed with that in focus. In the interviews the teenagers described five categories they perceived as important for decision-making competence: cognitive maturity, personal qualities, experience, social network and parent involvement. Parent involvement was described as both constructive and destructive. These categories were interpreted in the overall theme that “teenagers deserve respect and support for their shortcomings during the maturity process”. Ninety teenagers between 14 and 17 years of age attended education in a camp setting and were compared to a reference group, who had declined participation. The camp did not have any positive effect on metabolic control, but the frequency of insulin pump use after camp education increased. In a cross-sectional comparison, the campers had more positive attitudes towards diabetes and self-care than the non-campers did. The “Check your health” instrument was tested for reliability and validity in 199 teenagers between 12 and 17 years of age. The instrument was found to be reliable and valid for use on a group level in teenagers with diabetes. In conclusion, empowerment education programmes should be tailored to suit young people with diabetes, and should preferably be integrated into routine care. Teenagers who prefer individual education may be offered an individual education plan. Parents should be involved in all education of teenagers with diabetes, with the purpose of increasing teamwork and decreasing control and conflict. Continued assessment of teenagers perceived health and perceived burden of diabetes can be carried out using the “Check your health” instrument.

Background: Type 1 diabetes is a chronic disease for which there is currently no cure, and high quality care is essential if acute and long-term complications are to be avoided. Many children and adolescents have inadequate metabolic control with increased risk for complications later in life, and adolescent girls have reported low quality of life. Differences in metabolic control between treatment centres have been found but the reasons for this are unclear. Diabetes is a largely self-managed disease. Patient education is central to successful self-management but little is known about how to make best use of diabetes communities on the Internet and integrate them into a practitioner-driven service. Aim: The main objective of this thesis was to gain better understanding of how to improve the quality of diabetes care for children and adolescents, aiming to have near-normal blood glucose, to prevent both acute and late complications and to have good quality of life. Methods: The geographic populations of two paediatric centres (n=400) received validated questionnaires on perceived quality of care and Health-Related Quality of Life (HRQOL). An intervention with a web portal containing diabetes-related information and social networking functions was carried out within the same population. Clinical variables from 18 651 outpatient visits registered in the Swedish paediatric diabetes quality registry, SWEDIABKIDS were analysed. Using data from SWEDIABKIDS, five centres with the lowest mean HbA1c, five with the highest, and five with the largest decrease in centre mean HbA1c between 2003 and 2007 were identified. Team members (n=128) were asked about structure, process, policy, and the messages given to patients about important diabetes issues. Results: Specific areas that were identified as needing improvement included information about self-care, waiting time at outpatient clinics and for treatment, and access to care. Diabetes seemed to reduce HRQOL. Subjects with better metabolic control and with higher frequency of injections reported slightly higher HRQOL, as did those living with both parents compared to those with separated parents. Only 35% of children and adolescents with diabetes in Sweden had an HbA1c level below the treatment target value. Mean HbA1c showed a correlation with mean insulin dose, diabetes duration, and age. A difference between centres was found, but this could not be explained by differences in insulin dose, diabetes duration, or age. Adolescent girls reported lower HRQOL, as did parents of girls aged &lt; 8 years. Girls also had poorer metabolic control, especially during adolescence. In teams with the lowest and the most decreased mean HbA1c, members gave a clear message to patients and parents and had a lower HbA1c target value. Members of these teams appeared more engaged, with a more positive attitude and a greater sense of working as a team. Members of teams with the highest mean HbA1c gave a vaguer message, felt they needed clearer guidelines, and had a perception of poor collaboration within the team. High insulin dose, large centre population, and larger teams also seemed to characterize diabetes centres with low mean HbA1c. The most frequently visited pages on the web portal were the social networking pages, such as blogs, stories and discussions, followed by the diabetes team pages. Those who used the portal most actively were younger, had shorter diabetes duration, and lower HbA1c, and were more often girls. The web portal was not found to have any significant beneficial or adverse effects on HRQOL, empowerment or metabolic control. Conclusions: The quality of diabetes care for children and adolescents in Sweden is not sufficiently good and needs to improve further if complications in later life are to be avoided. Psychosocial support for children and adolescents with diabetes should be appropriate for age and gender. The attitudes of the members in the diabetes care team and the message they give to patients and their parents seem to influence metabolic control in children and adolescents. A clear and consistent message from a unified team appears to have beneficial effects on metabolic control. A web portal that includes comprehensive information about diabetes, and the opportunity to communicate with other people with diabetes and with healthcare professionals may be a useful complement to traditional patient education tools. Members of the diabetes team should encourage its use.

The general aim of this thesis was to evaluate different aspects of patient education for people with type 2 diabetes in Swedish primary health care. The evaluation was conducted in a primary health care setting in central Sweden and in Swedish primary health care in its entirety. Seven centres in central Sweden had implemented the empowerment programme for patients with type 2 diabetes. Data on 16 care providers’ views on implementing the programme were collected in focus-group interviews. The effect and the patients’ experiences of the programme were evaluated in a randomized controlled trial (RCT) (n=101) and in individual interviews (n=28). In the RCT, 50 patients were assigned to the programme and 51 patients to routine diabetes care. The patients answered a 27-item questionnaire and BMI and HbA1c were measured, before the intervention and at one-year follow-up. Further, data from 485 primary health care centres with 91,637 diabetic patients were collected to evaluate patient education in Swedish primary health care in its entirety. The care providers experienced conflicting roles in changing from expert to facilitator in the empowerment programme. The programme improved patients’ confidence in diabetes knowledge and contributed to their experience of self-control, while patients in the routine diabetes care experienced external control. Of the 485 centres, 50% reported having checklist-driven individual counselling and 8% that they individualized the counselling based upon patients’ needs. Most centres (&gt;90%) set individual goals, but only one-third involved patients in the final decisions regarding their goals. Setting individual goals was found to have an impact on patients’ possibilities to reach national treatment targets. In conclusion, the implementation of empowerment in patient education demands support to care providers in order to influence patients’ self-care. Furthermore, patients need to reflect upon necessary self-care changes and also set individual goals to facilitate the reaching of national treatment targets.

Läkemedels relaterade problem är en stor orsak till återinläggningar på sjukhus. Problemen orsakar både fysiska, psykiska och ekonomiska konsekvenser för patienten och samhället. Tidigare studier visar att många patienter har dålig kunskap om sin läkemedelsbehandling. Syftet med denna studie är att undersöka patienters upplevelser av läkemedelshantering såväl inneliggande som i den vana hemmiljön, samt att inhämta underlag för förbättringar i läkemedelshanteringen. Metoden är kvalitativ med fenomenologisk ansats och elva intervjuer har utförts. Analysen utfördes enligt kvalitativ innehållsanalys. Resultatet visar att patienter känner att de måste lita på det vårdpersonalen säger och gör och ser inget annat val. Bristande information leder till att patienten ifrågasätter om det verkligen är rätt medicin han eller hon får. Resultatet visar på vissa faktorer som är viktiga för att få en väl fungerande läkemedelshantering och det latenta innehållet i resultatet sammanfattas som att en väl fungerande läkemedelshantering bygger på goda kunskaper, kommunikation och delaktighet. / Drug related problems (DRP) are a major concern for hospital readmissions. These problems have physical, physiological and economical implications for the patients and for society. Research has shown that many patients´ have a lack of knowledge about their drug therapy. The aim of this study was to investigate patients´ perceptions of the medication use process in hospitals as well as in their own home environment, and in addition to establish foundations to provide a better medication use process. The research was based on eleven interviews using a qualitative method with a phenomenological approach. A qualitative content analysis was applied. The study shows that patients´ have a feeling that they have to trust their caregivers for what they say and what they do and there is no other choice. Lack of information leads to questioning if its´ the right medication he or she received. The results show that certain main factors are important for a functional medication use process. The main factor being that a good medication use process is based on good knowledge, communication and involvement. / " En säker läkemedelsprocess"

A North American man has approximately a one in six chance of being diagnosed with prostate cancer in his lifetime. In most cases, there is no clearly optimal treatment, so he may be invited to participate in a treatment decision between several medically reasonable options, each with potential short- and long-term side effects. Information needs are high at diagnosis and can continue to be elevated for years or decades. Many men and their families seek information online, where, due partly to the array of websites available and high variation in information preferences, it can be difficult to find personally relevant and useful websites. This research sought to address this issue by developing methods to categorize prostate cancer websites and exploring quantitative and qualitative relationships between websites, information-seekers, and individuals’ assessments of websites. The research involved a series of three studies. In the first study, 29 men with prostate cancer participated in a needs assessment involving questionnaires, an interview, and interaction with a prototype website. In the second study, a detailed classification system was developed and applied to a set of forty websites selected to be representative of the variety of prostate cancer websites available. The third (online) study collected clinical, cognitive, and psychosocial details from 65 participants along with their ratings of websites from study two. A number of hypotheses were tested. One finding was that, compared to men with greater trust, men with lower trust in their physician tended to judge commercial websites as less relevant and useful, and found websites with descriptions of personal experiences more relevant and useful. Analyses also addressed a number of exploratory questions, including whether website and individual attributes might predict preferences for websites. Using discriminant analysis on 80% of the data, two functions were identified that predicted ratings significantly better than chance. These relationships were then validated with 20% of the data held back for testing. The results are discussed in terms of their implications for information tailoring and recommender systems for prostate cancer patients searching for information online. Limitations of the current research and recommendations for future research are also presented.

Studiens syfte var att beskriva hemodialyssjuksköterskors kunskaper om fosfater, livsmedel med ett högt fosfatinnehåll samt förmågan att omsätta den kunskapen till ett dagsintag. Metod: Designen var deskriptiv med komparativa och korrelerande inslag. En egenkonstruerad enkät användes med kunskapsfrågor som var indelad i tre teman; kroppen, livsmedel och dagsintag. Totalt 19 hemodialysenheter besvarade enkäten vilket gav en undersökningsgrupp med 181 respondenter. Statistiska uträkningar gjordes för sammanställande av antal poäng per tema och korrelation mellan kön, ålder, antal år som sjuksköterska och antal år inom dialys. Huvudresultatet var att respondenterna hade högst kunskap om hur fosfater påverkar kroppen med medelvärdet 7,6 poäng (76,4 %) och lägst kunskap gällande att överblicka ett dagsintag 5,7 poäng (57,5%). Mellan en till 20 sjuksköterskor vid varje hemodialysenhet responderade med ett medelvärde mellan 16.0 och 25,5 poäng, medelvärde för alla var 20,0 poäng. Slutsatsen var att hemodialyssjuksköterskor har mest kunskap då det gäller kroppen och minst kunskap i att överblicka ett dagsintag. Högre ålder, fler antal arbetsår som sjuksköterska och inom dialys resulterade i högre kunskapsnivå när det gäller kroppen. / The aim of the study was to describe hemodialysis nurses knowledge of phosphates, foods with high phosphate content and the ability to translate that knowledge into a daily intake. Method: The design was descriptive with comparative and correlative features. A self-designed questionnaire with knowledge questions were used and divided into three themes: the body, food and daily intake. A total of 19 hemodialysis units responded yielding a study group of 181 respondents. Statistical calculations was made for the compilation of the number of points per theme and correlation between gender, age, number of years as a nurse and years with dialysis. The main results was that the respondents had the highest understanding of how phosphate affects the body with the mean 7.6 points (76.4%) and lowest knowledge to overview a daily intake 5.7 points (57.5%). The hemodialysis units had an average between 16.0 and 25.5 points, total average was 20.0 points.The conclusion was that hemodialysis nurses have the highest knowledge about the body and the lowest knowledge to overview a daily intake. Hemodialysis nurses with higher age and more working years have greater understanding of the body.

Ball State University LibrariesLibrary services and resources for knowledge buildingMasters ThesesThere is no abstract available for this thesis.

A North American man has approximately a one in six chance of being diagnosed with prostate cancer in his lifetime. In most cases, there is no clearly optimal treatment, so he may be invited to participate in a treatment decision between several medically reasonable options, each with potential short- and long-term side effects. Information needs are high at diagnosis and can continue to be elevated for years or decades. Many men and their families seek information online, where, due partly to the array of websites available and high variation in information preferences, it can be difficult to find personally relevant and useful websites. This research sought to address this issue by developing methods to categorize prostate cancer websites and exploring quantitative and qualitative relationships between websites, information-seekers, and individuals’ assessments of websites. The research involved a series of three studies. In the first study, 29 men with prostate cancer participated in a needs assessment involving questionnaires, an interview, and interaction with a prototype website. In the second study, a detailed classification system was developed and applied to a set of forty websites selected to be representative of the variety of prostate cancer websites available. The third (online) study collected clinical, cognitive, and psychosocial details from 65 participants along with their ratings of websites from study two. A number of hypotheses were tested. One finding was that, compared to men with greater trust, men with lower trust in their physician tended to judge commercial websites as less relevant and useful, and found websites with descriptions of personal experiences more relevant and useful. Analyses also addressed a number of exploratory questions, including whether website and individual attributes might predict preferences for websites. Using discriminant analysis on 80% of the data, two functions were identified that predicted ratings significantly better than chance. These relationships were then validated with 20% of the data held back for testing. The results are discussed in terms of their implications for information tailoring and recommender systems for prostate cancer patients searching for information online. Limitations of the current research and recommendations for future research are also presented.

Bakgrund: För patienter med långvarig sjukdom är kunskap om sjukdom och behandling av stor betydelse för att kunna hantera sitt dagliga liv. En väg till ökade kunskaper är via patientundervisning. Syftet: Syftet med denna studie var att beskriva patienters erfarenhet av undervisning vid långvarig sjukdom. Metod: Studien bygger på tolv vetenskapliga artiklar som har analyserats med kvalitativ metod. Resultat: Patienter erfar att en relation med känsla av förståelse och respekt samt en relation som bygger på en öppen dialog har grundläggande betydelse för deras lärande. När kunskap erhölls ökade självförtroendet och patienter vågade ställa frågor vilket skapade trygghet. Kunskap behövdes för att patienten skulle kunna ta ansvar och fatta beslut. Kunskap hade en positiv inverkan på hälsa och välbefinnande. Konklusion: Studien visar att undervisning är av stor betydelse för patienter med långvarig sjukdom hälsa och välbefinnande samt för deras möjlighet till delaktighet i vården. Sjuksköterskan har en viktig roll i att skapa en relation som bygger på öppenhet, förståelse och respekt. / Background: For patients with long-term illness education is of great importance to be able to self-care their disease in daily life. Aim: The aim of this study is to describe patients experience of education during long-term illness. Method: The study is a qualitative literature- based study. Based on twelve scientific articles. Results: Patients experiencing a relationship whit a sense of understanding and respect. Relationship based on open dialogue is essential to patient learning. When knowledge was transferred to patients, their confidence increased which resulted courage to ask questions and that made patients feel more safe. For patients to be able to take responsibility for making their own decisions a lot of knowledge was needed. Knowledge did have a positive impact on the patients health and well being. Conclusion: Education is of great importance for patients with long-term illness. The nurse has an important role of transferring knowledge, which leads to the patient feeling more safe. A relationship with an open dialog that includes sense of understanding and respect increased the patient’s participation.