Problem: Many individuals with chronic illnesses such as stroke and ongoing activity limitations report self-perceived health related quality of life (HRQL) that is similar to that of healthy individuals. This phenomenon is termed response shift (RS). RS describes how people change: internal standards in assessing HRQL (recalibration), values (reprioritization), or how they define HRQL (reconceptualization), after an event such as stroke. Changes in HRQL post stroke may be inaccurate if RS is not taken into account. Increased knowledge of RS may affect the way in which HRQL measures are used, both clinically and in research. The overall objective was to assess RS in construct specific HRQL models post stroke: physical function, mental health, and participation. Methods: Data were analysed from the longitudinal study “Understanding Quality of Life Post-Stroke: A Study of Individuals and their Caregivers”. Six-hundred and seventy- eight persons with stroke at 1, 3, 6, and 12 months post stroke participated. Generic and stroke specific HRQL measures were collected. Descriptive analysis was completed with SAS, and identification of RS utilized structural equation modeling with LISREL. Results: Mean age of participants was 67 years (SD 14.8), and 45% were female. RS was identified in mental health using a framework which was developed for identifying RS statistically with multiple time points. RS was also identified in physical function where it had not been expected, possibly due to the self perceived nature of the response options. The effect size of change in physical function was affected by the presence of RS. The timing of RS in mental health and physical function was primarily around the 12 month time period, and predominantly recalibration RS. RS was also identified in participation. Conclusions: The framework that was developed was useful in identifying RS and incorporated important issues such as multiple testing and validation of the model. The presence of RS affects measurement of HRQL constructs post stroke; recalibration RS can be measured clinically with specific methods to account for RS. RS should also be measured in research studies to ensure accurate measurement of change. Future research should evaluate additional models in stroke and other populations. / October 2008

Reprint from: Allergology International 55(1), 2006, p.59-65

Bakgrund: Personer som blir föremål för hjärttransplantation är mycket sjuka och det finns ingen annan behandling att tillgå. När hjärttransplantationen är genomförd krävs livsstilsförändringar och livslång och kontinuerlig behandling av immunosuppressiva läkemedel. En transplantation är en svårbegriplig händelse som väcker mångskiftande känslor. Syfte: Beskriva vuxna personers upplevelser efter en hjärttransplantation. Metod: En allmän litteraturstudie genomfördes. Resultat: I resultatet framkom fyra subkategorier: Känslor om det transplanterade hjärtat och donatorn, det psykiska lidandet, andligt och socialt stöd och framtidstro. Därefter bildades huvudkategorin: Livet som den hjärttransplanterade. Diskussion: Livet efter en hjärttransplantation är en komplicerad situation. Det kan vara en svårighet att anpassa sig till det donerade hjärtat. Det är därför viktigt med en god vårdrelation för att stötta och inge positiva aspekter till upplevd hälsa, detta har diskuterats utifrån Antonovskys teori KASAM. Slutsats: En god kontakt inbjuder till frågor om problem och funderingar kring sin hälsa vilket leder till trygghet och ökad kunskap. / Background: A person who are subject to heart transplantation is very ill and there is no other treatment available. When the heart transplantation is made lifestyle changes and life-long and continuous treatment of immunosuppressive drugs requires. A transplant is an obscure event that brings diverse emotions. Aim: To describe adults’ experiences after a heart transplantation. Method: A literature review was conducted. Results: In the result four subcategories appared: Emotion on the transplanted heart and the donor, the psychological suffering, spiritual and social support and belief in the future. Subsequently formed the main category: Life as the heart transplant. Discussion: Life after a heart transplant is a complex situation. It can be a difficulty to adapt to the donated heart. It is therefore important, but good health care relationship to support and inspire positive aspects of perceived health, this has been discussed on the basis of Antonovsky theory of Sense of Coherence. Conclusion: A good contact to invite questions about their health problems leading to security and increased knowledge.

Past research advocates the need for long-term care (LTC) facilities to adopt a person-centred model of care to optimize residents quality of life. The construct of quality of life in LTC has been defined by satisfaction with a set of domains identified by Kane and colleagues (2003). One goal of this study was to determine which domain is the most predictive of overall well-being among LTC residents in a rural setting. Based on past research and on Deci and Ryans (1985; 1991) self-determination theory, satisfaction with autonomy was predicted to emerge as most predictive of overall well-being. The present study also examined the relation between resident quality of life and well-being, and the degree of routinization (i.e., adherence to a rigid, inflexible daily schedule) within the LTC environment. Routinization is conceptually at odds with a person-centred model of care, yet its relation to the well-being of care recipients had not been examined prior. One hundred and ninety-eight residents from 15 LTC facilities in rural Saskatchewan participated in individual interviews to measure their satisfaction with 11 quality of life domains (Kane et al., 2003), and their overall well-being (using the Memorial University of Newfoundland Scale of Happiness; MUNSH; Kozma & Stones, 1980). One hundred and thirty-one staff from the 15 facilities completed a questionnaire designed to assess routinization within the LTC environment. Contrary to predictions, autonomy failed to emerge as a significant predictor of overall well-being among sample residents. The domain of meaningful activity received residents lowest satisfaction rating of the 11 domains, and also accounted for the most unique variance in overall well-being. Routinization was negatively related to resident quality of life, with staff rating routinization higher in facilities which residents reported lower satisfaction with quality of life. Results provide focus for improving the quality of life of LTC residents, and point to areas for further study.

Although the concept of quality of life (QOL) has become increasingly popular in the past few decades in a number of fields of research, few studies have specifically examined QOL for high-functioning individuals with autism spectrum disorders. Several studies have found that objectively measured outcomes for adults with high-functioning autism (HFA) and Asperger's syndrome (AS) tend to be poor in terms of employment, relationships, mental health, and independence. However, it has been recently suggested that in order to obtain a more accurate depiction of overall QOL, subjective impressions must be examined as well. Recent research has found that the most significant predictor variable of QOL for high-functioning individuals with autism spectrum disorders is the discrepancy between support needed and formal support provided. The current study examined 15 formal support variables and their relationships to subjective QOL scores on the WHOQOL-BREF, in 4 domains (physical health, psychological health, environment, and social relationships) as well as overall QOL. A total of 33 participants completed a questionnaire that included items designed to obtain information on demographics and formal support. Participants also completed the WHOQOL-BREF in order to obtain overall QOL scores along with QOL domain scores. Significant negative correlations were found between Environmental QOL scores and the accessing of a social worker as well as the accessing of social groups. Significant negative correlations were also found between Social QOL scores and the accessing of a psychiatrist and a single-item overall QOL score and the accessing of counselling or psychotherapy. All correlations between formal support factors and QOL scores showed lower QOL scores for those individuals who accessed the supports. The results of standard multiple regression analyses revealed a significant model that accounted for 49% of the total variance in the amount of total supports accessed as well as two other significant models predicting Social QOL and Environmental QOL.

Background: Quality of life is a concept of individual meaning which is perceived differently depending on the person experiencing it. To have a chronic disease in the lung, such as asthma, has an effect on the quality of life. Asthma affects people of all ages. It is a disease that causes a constriction in the patients’ airways which leads to a feeling of suffocation which in turn produces a feeling of anxiety. Aim: The purpose is to illuminate which factors affect the quality of life in adult patients with asthma. Method: This is a literary review based on ten articles, both quantitative and qualitative, from four different continents. The articles were found in the databases Cinahl, PubMed, Medline and Academic Search Premier. Results: There were many factors affecting the quality of life in patients with asthma. Six categories emerged from the analysis; demographic factors, physical difficulties, treatment and environment and the inner were mental difficulties and knowledge and communication. Discussion: The most prominent factor in relation to quality of life was the existence of non-wanted symptoms. The symptoms the patients experienced were among other things caused by a lack of knowledge. Dorothea Orems "theory of self-care" was used in parts of the discussion and it was revealed that barriers to knowledge were for the patient an obstacle to self-care. / Bakgrund: Livskvalitet är ett koncept som har en individuell prägel och som kan betyda olika för olika personer. Att vara drabbad av en kronisk sjukdom i lungorna, såsom astma, har en påverkan på livskvaliteten. Astma drabbar människor i alla åldrar och är en sjukdom som gör att patienten får en sammandragning i luftvägarna, vilket leder till en ångestskapande känsla av att kvävas. Syfte: Syftet är att belysa vilka faktorer som påverkar livskvaliteten hos vuxna patienter med astma. Metod: Denna studie är gjord i form av en litteraturöversikt baserad på tio artiklar från fyra världsdelar. Artiklarna är av både kvalitativ och kvantitativ metod och funna i databaserna Cinahl, PubMed, Medline samt Academic Search Premier. Resultat: Det är många faktorer som påverkar livskvaliteten hos patienter med astma. Analysen resulterade i sex kategorier; demografiska faktorer, fysiska besvär, behandling, miljö, psykiska besvär samt kunskap och kommunikation. Diskussion: Den faktor som framkom som tydligast i förhållande till livskvaliteten var förekomsten av icke önskade symptom. Dessa symptom som patienterna upplevde hade bland annat en orsak i de kunskapsbrister som fanns. Dorothea Orems ´Teori om egenvård´ användes som underlag i delar av diskussionen och det framgick att kunskapsbrister hos patienten var ett förekommande hinder till egenvård.

Patienter med förmaksflimmer är en grupp vars symtom ofta underskattas. Symtomen påminner om de som uppkommer vid en hjärtinfarkt med bröstsmärta, hjärtklappning, andnöd och trötthet. Syftet med studien var att belysa hur det kan vara att leva med förmaksflimmer. En litteraturstudie utfördes där vetenskapliga artiklar analyserades och sammanställdes. Resultatet visade att patienternas livskvalitet var kraftigt nedsatt och även anhöriga påverkades. En ökning av ångest och depression sågs vid uppföljning sex och tolv månader efter fastställd diagnos. Informationen och omvårdnaden var bristfällig och ett kunskapsbehov identifierades. Evidensbaserade riktlinjer för omvårdnad och information har utarbetats för denna patientgrupp, men resultatet visade att det inte fanns några utarbetade vårdprogram att tillgå i Sverige. Baskunskaper i omvårdnaden saknades hos personalen som vårdade patienterna. Här ses ett stort behov av omvårdnadsforskning inom området. Ett ökat samarbete mellan forskare och kliniskt verksamma sjuksköterskor behövs för att nya rön ska kunna implementeras i den dagliga vården. / Patients with atrial fibrillation is a group whose symptoms are often underestimated. Symptoms are similar to those arising from a heart attack with chest pain, palpitations, shortness of breath and fatigue. The purpose of this study was to illustrate how it can be to live with atrial fibrillation. A literature review was conducted in which scientific articles were analyzed and summarized. The results showed that patients' quality of life was dramatically reduced and even relatives were affected. An increase in anxiety and depression were seen at follow-up six and twelve months after the established diagnosis. The information and care was poor and the knowledge needs were identified. Evidence-based guidelines for care and information has been prepared for this group of patients, but the result showed that there were no prepared programs of care available in Sweden. Basic knowledge of nursing was missing the nursing staff who cared for the patients. Seen here is a great need for nursing research in the field. Increased cooperation between academics and clinical nurses is needed so that new findings could be implemented in the daily care.

Huvud- och halscancer drabbar i Sverige varje år cirka 1200 män och kvinnor. Behandling sker främst genom strålbehandling och kirurgi. Både sjukdom och behandling kan ge svåra och många gånger bestående men som patienten måste lära sig leva med. Syftet med denna studie var att belysa patienternas upplevelser och erfarenheter efter avslutad behandling för huvud- och halscancer. Arbetet utfördes som en litteraturstudie där tio vetenskapliga artiklar analyserades. Resultatet visar att familj och vänner nu sätts i första rummet, det visar också på svårigheter hos de som är ensamma. Socialt ätande och förändrat utseende är två faktorer som inverkar på patienternas liv, och att de tar till olika strategier för att inte låta biverkningar och oro för sjukdom begränsa livsrummet. Patienterna upplever, trots sjukdom och biverkningar, ett stort mått av livskvalitet. Mycket kraft och energi läggs dagligen på att fungera så normalt som möjligt tillsammans med sig själv och sin omgivning. Utbildning i kommunikation och bemötande för att rusta sjuksköterskor att möta dessa patienters unika behov torde höja kvaliteten på omvårdnaden. Ytterligare forskning behövs och då främst med kvalitativ ansats för att belysa patienternas personliga upplevelser. / InSwedenthere are about 1200 new cases of head and neckcancer reported every year. The main treatments are radiotherapy and surgery. Both illness and treatment causes the patients bad sequele that they have to adjust to. The aim of this study was to obtain what head and neck cancer patients experience are after they completed treatment for head and neckcancer. The study was carried out as a literature study where ten research articles were analyzed. The results show that family and friends are what the patients value most and it also shows that it could be difficult for them who are alone. Social eating and changed appearance are two factors that have impact on the patients´ life, and that the patients embrace different strategies to prevent side effects and anxiety over illness to impact negatively in their life space. Despite this, patients do experience a good quality of life. It is a high level of power and energy these patients mobilize every day in order to live as normal as possible with themselves and among the rest of the world. Education in communication and treatment behavior for nurses to meet these patients´ unique needs could contribute to improve the nursing quality. Further research is needed, especially qualitative research, to highlight patients´ personal experiences.

Aim: The aim of present study was to determine the frequency of taste and smell disorders occuring in patients receiving chemotherapy for cancer. Methods: The study was of an empirical cross sectional quantitative descriptive design. During one month, consecutive cancer patients at outpatient units in two Swedish hospitals were asked to participate in the study by completing a questionnaire that had been developed previously for a similar study. All participants had undergone at least 1 cycle of intravenous chemotherapy or  a minimum of seven days of oral chemotherapy. Results: A total of 102 patients completed the questionnaire. Results show that 55 % experienced taste disorders and  42 % experienced smell disorders. Both disorders are more common in women than in men. Of patients with taste disorders 47 % reported that it  impacted on their daily life to some degree and of patients with smell disorders the corresponding number was 33%. Patients with smell disorders reported a smaller degree of impact on their daily life than did patients with taste disorders. Conclusion: Both taste and smell disorders are common in cancer patients treated within chemotherapy. More research into factors that might eliminate or dimnish these problems is needed.

Syftet med den föreliggande litteraturstudien var att beskriva kvinnors respektive mäns livskvalitet efter insjuknande i hjärtinfarkt och de copingstrategier som användes i hanteringen av vardagen. En deskriptiv litteraturstudie genomfördes utifrån sex kvalitativa samt åtta kvantitativa studier med övervägande delen hög kvalitet. Publikationsåren för de inkluderade artiklarna var mellan 2000 och 2010. Artikelsökningen genomfördes i databaserna MedLine (PubMed) samt Cinahl med följande sökord: Hjärtinfarkt, anpassning, psykologisk, livskvalitet och coping. Sammanfattningsvis var vanligt förekommande problem under den första tiden efter insjuknande i hjärtinfarkt fysiska symtom och emotionell utmattning där tillfredsställande behandling och god sjukdomsinsikt kunde leda till välbefinnande. Följande faktorer såsom stress, oro, ångest, nedstämdhet, depression samt kronisk trötthet hade negativ inverkan på den upplevda livskvaliteten, liksom alltför omfattande livsstilsförändringar. Att återgå till sitt arbete hade däremot positiva effekter ur de fysiska och psykologiska aspekterna på livskvaliteten. Likaså hade det sociala nätverket inverkan på välbefinnandet där män i huvudsak sökte stöd från sin partner medan kvinnor även sökte sympati från övriga anhöriga. Optimistiska copingstrategier var vanligast bland både kvinnor och män, dock använde sig kvinnor av fler copingstrategier och hade svårare att hantera sin vardag än vad män hade. För ytterligare evidens i copingstrategier och genusskillnader krävs ytterligare forskning av komparativ design. / The purpose of this study was to describe perceived quality of life and used coping in daily life of women and men after myocardial infarction, which is described in the literature review included studies and methodological quality. A descriptive literature review was conducted based on six qualitative and eight quantitative studies of high quality nature. In conclusion, the year of publication of the studies was between the years of 2000 and 2010. The databases MedLine (Pubmed) and Cinahl were used in the searching of scientific articles with the following keywords: Myocardial infarction, Adaptation, Psychological, Quality of life and Coping. Furthermore, the findings in satisfaction of treatment and good insight in illness was increased in terms of well-being. Return to work appeared to bring positive outcomes of the physical and psychological aspects in quality of life. By the same token, social network had an impact in terms of well-being, since men mainly perceived available support trough their partner as women in larger extension perceived available support from other relatives than men did. Optimistic coping was the most frequently used strategy by both women and men, however, women practiced several strategies of coping. Also, difficulties were found in women managing their daily life compared to men. Regarding coping strategies as well as gender differences, further research is to claim.