<p>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. </p><p>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. </p><p>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 (>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. </p><p>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.</p>

<p>Det finns inga exakta siffror i Sverige på hur många barn som erhåller akut avancerad vård, men sjukhusvistelserna för barn omfattar en hög del akut, ofta kritisk vård. Det finns heller inga klart uttryckta riktlinjer för föräldrars närvaro i samband med akut avancerad vård av deras barn på sjukhusen i Sverige. Syftet med studien var att öka kunskapen om föräldrars upplevelser av att vara närvarande vid akut avancerad vård av deras barn som vårdas på sjukhus, med målet att få systematisk kunskap om huruvida närvaro bör uppmuntras. En litteraturstudie genomfördes och fem vetenskapliga artiklar och en uppsats på nivån 61-80 poäng granskades. Föräldrar mellan 20-44 år ingick i studien och barnen som genomgått akut avancerad vård var mellan 0-18 år. Resultatet visar att föräldrarna upplever att närvaron till största del är positiv. De upplever att deras närvaro lindrar både deras eget och barnets lidande. Det förekommer dock upplevelser som leder till ett ökat lidande, som t.ex. brister i vården. Resultatet beskriver också att föräldrarna har en moralisk plikt att närvara, att det är deras rättighet och skyldighet som förälder. Som allmänsjuksköterska är det vanligt att stöta på situationer där föräldrarna vill närvara vid deras barns akuta avancerade vård. Det är då viktigt att kunna stödja både patienten och föräldrarna och denna studie bidrar med kunskap om vad föräldrarna upplever som viktiga faktorer för att detta ska kunna ske.</p>

<p>Vetskapen om att hjärtinfarkt till stor del kan förebyggas genom en hjärtskyddande livsstil gör området mycket intressant.</p><p><strong>Syfte:</strong> Att göra en undersökning över tid angående livsstilskunskap och beteende hos patienter som haft hjärtinfarkt med fokus på fysisk aktivitet, stresspåverkan, intag av frukt och grönsaker, samt rökning.</p><p><strong>Metod:</strong> Enkätutskick gjordes till två patientgrupper, som haft hjärtinfarkt för 2-4 månader sen (grupp 1, n = 35) respektive för ca 2 år sedan (grupp 2, n = 32). Svarsfrekvensen uppgick till 83 %. </p><p><strong>Resultat:</strong> Kunskapsmässigt framgick det att båda grupperna hade överlägset bäst kunskaper gällande rökning och stress. Störst osäkerhet rådde inom området frukt/grönsaker. Efter två år såg man att samtliga områden hade minskat i sin betydelse, dock marginellt inom fysisk aktivitet. Ett relativt gott hjärtskyddande beteende kan konstateras i patientgrupperna inom samtliga områden förutom stresshantering, vilket skilde sig markant från de övriga. En förändring till något sämre beteende över tid såg man inom rökning och marginellt rörande fysisk aktivitet. Gällande intag av frukt och grönt hade förändring skett både till det sämre och till det bättre. En förändring till ett bättre beteende sågs dock beträffande stresshanteringen. Beträffande hur kunskap stämde överens med beteende ses samma mönster för båda grupperna, d v s att det inom rökningen är bäst överensstämmelse, följt av fysisk aktivitet, intag av frukt och grönt, samt sist området stress. En minskning angående överensstämmande kan konstateras i grupp 2 i följande ordning, frukt/grönsaker, fysisk aktivitet och sist rökning. Inom stressområdet ökade istället överensstämmandet mellan kunskap och beteende över tid.</p><p><strong>Slutsats:</strong> Denna kartläggning antyder att koronarpatienters kunskaper och beteende är relativt tillfredsställande på kort och lång sikt, men kunskapsmässigt är det främst inom området frukt/grönsaker det finns utrymme för ytterligare förbättringar och beteendemässigt inom stresshantering, vilket bör främjas genom större vårdinsatser inom respektive område. </p>

<p>Bakgrund: Endometrios är en godartad kronisk sjukdom som kan drabba kvinnor i alla åldrar. Symptomen är både av fysisk och mental karaktär och upplevs väldigt individuellt. Fysiska symptom i form av svår smärta uppstår före menstruationen och ökar sedan i intensitet. Mentala symptom kan vara förändringar i stämningsläge. Sjukdomen endometrios kan lindras genom hormonbehandling och kirurgi. Det finns få forskningsstudier som inriktar sig på kvinnans upplevelse av endometrios.</p><p>Syfte: Syftet med studien var att beskriva kvinnors upplevelser av att leva med sjukdomen endometrios.</p><p>Metod: Litteraturstudie med kvalitativ ansats baserad på vetenskapliga artiklar och analyserad med manifest innehållsanalys.</p><p>Resultat: De endometriosdrabbade kvinnornas fysiska hälsa präglas av smärta. Sjukdomen resulterade i förändringar, både privat och yrkesmässigt. Kvinnornas symptom blev ofta bagatelliserade, av läkare och omgivning. Deras bemötande framkallade frustration hos patiensgruppen men sporrade samtidigt kvinnorna att ta kontroll över smärtan.</p><p>Slutsats: Endometrios drabbar alla aspekter i kvinnors liv. Av resultatet framgår att det finns kunskapsbrister om endometrios hos vårdpersonalen, vilket leder till bagatellisering av sjukdomstillståndet och därmed ett förlängt lidande.</p>

<p>Syftet med denna studie var att belysa olika aspekter av nyutexaminerade allmänsjuksköterskors erfarenheter av att möta närstående i sorg. Studien hade en kvalitativ ansats och data insamlades genom sex stycken bandade intervjuer på tre medicinavdelningar vid ett medelstort sjukhus i mellersta Sverige. Datamaterialet analyserades enligt en manifest metod och ur analysen skapades två huvudteman – relationer och kunskap. Det största temat är relationer som byggs upp av tre underteman och beskriver sjuksköterskans förhållande till närstående, sig själv och övrig vårdpersonal. Temat kunskap innehåller två underteman och beskriver sjuksköterskans kunskapsutveckling och behov av kunskap.</p><p>Slutsatserna från studien är att nyexaminerade sjuksköterskor anser att möta närstående i sorg är en av deras svåraste uppgifter på grund svårigheterna i att tillgodose närståendes individuella behov. Det visade sig även att sjuksköterskorna ansåg att sjuksköterskeutbildningen inte förberett dem tillräckligt för detta. Att lära sig att möta närstående är något som sker i praktiken. Sjuksköterskorna ansåg att det viktigaste i mötet med närstående är att vara närvarande och visa att de är tillängliga snarare än att säga eller göra rätt saker.</p><p>Vidare forskning inom området skulle kunna fokusera på skillnader mellan erfarna och nyexaminerades erfarenheter. En vidare forskning skulle också kunna inbegripa patientens perspektiv.</p> / <p>The aim of this study was to shed light on different aspects of newly graduated nurses’ experiences from interacting with relatives to patients who were dead or dying. The study has a qualitative approach and data was collected from six tape recorded interviews conducted at three medicine wards in a medium sized hospital in the middle of Sweden. The data was analyzed by a manifest content method and two main themes – relationships and knowledge, were derived from it. The largest main theme is relationships, which also contains three sub themes describing the nurse’s relationship to relatives, self and other members of staff. The main theme knowledge contains two sub themes which describes the nurse’s need for and development in knowledge. The study concludes that interacting with grieving relatives is one of the most complicated tasks for the newly graduated nurse. The difficulties were grounded in satisfying the complex needs of the relatives. The nurses stated that the nursing education program didn’t sufficiently prepare them for this, it was something they learnt from real life experience.</p><p>The findings of this study could be beneficial for the nurse education program as well as hospitals to increase their awareness of the difficulties newly graduated nurses experiences when interacting with grieving relatives.</p><p>Further research could involve describing differences between experienced and newly graduated nurses and including the patient’s perspective.</p>

The present doctoral thesis focuses mainly on the experiences of 20 women and men of becoming and being parents of a prematurely born child and on their perceptions of their contacts with health and medical care services. An additional aim was to investigate the utilisation of health care during the first year of life and its relation to high-risk diagnoses in the neonatal period. Data were obtained by interviews of the 20 sets of parents to infants born at a gestational age of &lt;34 weeks with no serious congenital defects. These parents were interviewed 1-2 weeks after the infant’s birth and at 2, 6 and 18 months of age. The interview texts were subjected to phenomenological and content analysis. Data was also obtained from the records of 36 infants born at a gestational age of &lt;31 weeks and with a birth weight of &lt;1500 g and 36 full-term infants. The records included information regarding contact with health care services including the child health centres (CHCs) and the outpatient clinics of the paediatric and ophthalmic clinics. Finally data from the other two quantitative studies were obtained from three questionnaires: Quality of Care from The Patient’s Perspective, The Swedish Parenthood Stress Questionnaire and The Toddler Behaviour Questionnaire. The result of the studies showed that the utilisation of health care by the very low birth weight infants was higher than that by the fullterm infants in paediatric and ophthalmic outpatient clinics. High-risk diagnoses in the neonatal period did not correlate with utilisation of care except for visits to the paediatric outpatient clinic, especially planned visits. The internalisation of parenthood was described by the parents as a time-dependent process, with four syntheses of experiences – alienation, responsibility, confidence and familiarity. The development and construction of the mothers’ and fathers’ parental identity followed a pattern that could be summarised into three themes: Unexpected start of parenthood, integration of parenthood into the sense of identity and recognition of parental identity. Important turning points in experiences of parenthood often occurred when the infant could be removed from the incubator, when it was discharged from the ward, and when the infant appeared normal compared to full-term infants. The quality of care was judged, from the parents’ and nurses’ perspective. In general the subjective importance of the given care was rated higher than the care actual given in both neonatal care and care at the CHCs. Higher ratings were given to neonatal care compared with the care at CHSs for medico-technical competence. It was also of importance, of both parents, to receive an optimal identity-oriented approach and socio-cultural atmosphere in the neonatal care and the care at the CHSs. High-risk diagnoses in the newborn did not affect the answers. Parental stress of very preterm children, at 18 months of age, did not differ notably from those parents of children born somewhat less premature, but they assessed their children as being rather later in the development of social behaviours. Parents of children who had had a difficult neonatal period were not more stressed when the child was 18 months old than those who had no problems in the neonatal period. In sum, this research project showed that the parents’ expectations and experiences of becoming mothers and fathers in preterm birth was a process of integrating the unexpected start of parenthood into the parents’ sense of identity and their way of being. When the parents developed a relationship with the infant, actively participated in its care on the basis of their own preferences, and received recognition as parents, this process was strengthened. It is therefore important that the professional caring of the staff should meet and involve the natural caring of the parents.

The present research study is a supervision project which was carried out between 2004-2006.  The overall aim of the research was to investigate how caring science supervision can support carers in integrating caring science and can contribute to a constructive way of integrating caring science knowledge with praxis. The research project consisted of supervision given to groups of carers in two different contexts where a caring science model for supervision was tested and developed. The experience of how carers integrate caring science knowledge through supervision has been studied by interviewing carers. Seven were interviewed in the first study about how they experienced their own learning process by participating in group supervision. The second study focused on how the supervisor’s selection of different supervision methods can support the carers’ development and understanding for the patient’s lifeworld. The interviews were analysed with the help of a reflective lifeworld approach. The results from the seven interviews consisted of a description of the essence and seven constituents. The results show that knowledge about caring, from the carers’ point of view, is an attitude that is taken for granted. With this as a starting point the carers listen and read what has happened to the patient in different situations. In the supervision session the carer and the supervisor have worked out a critical caring science investigation of the patient’s situation and developed new strategies for the patient’s caring. The interviewed carers point out the importance of a free zone, a learning room in supervision, where they can reflect and, in a constructive dialogue with each other, work with the patient’s situation together with the supervisor. In the second research study the supervisor’s selection of methods in supervision is in focus. The aim of using these different methods was to support the development of knowledge grounded in caring science. The supervision methods support the carers in the reflection process and stimulate them to develop good skills in the relationship with the patient.  The results also show, in two ways, how important the supervisor’s role is for the supervision process. Firstly in terms of being able to see and understand what the focus is in the carer’s narrative of the patient’s situation.  Secondly how the selection of an appropriate method can support the carers’ understanding of what obstacles there can be and which possibilities there can be for the caring of the patients. This work in the supervision process demands that supervisors are aware of how the group process can be integrated with the learning process. Keywords: caring science, phenomenology, lifeworld, reflection, dialogue, supervision, supervision methods.

This thesis explores the phenomenon of touch and describes its meaning in the healthcare context. Caring science theory based on a lifeworld approach forms the theoretical perspective of the dissertation and consequently the patient perspective is guiding the research. The ontological, epistemological and methodological framework of the thesis is phenomenology. The overall aim was to describe the phenomenon of touch in the healthcare context. Touch showed to be a phenomenon with several diverse aspects being differentially explicit in different contexts. Four empirical studies were therefore conducted in different contexts. Further, a synthesis of the empirical results was carried out to show the invariant meanings and structure of the phenomenon. Furthermore, a philosophical illumination of the results was carried out to further deepen and expand the understanding of touch related to healthcare. The phenomenon of touch is described as a complex caring movement, as an interplay between lived bodies forming a foundation to understand health, suffering, well-being, and care. The results show how touch has the power to both alleviate the patients’ suffering and to experience joy and deep connectedness, as well as how touch can frighten and cause or worsen suffering. In order to take advantage of the caring potential, the person who touches must be fully present in all senses of the word. Caring touch of different kinds can never be reduced to a “method”. It is much more than a mechanical and static act or a treatment. Moreover, touch that is objectifying may be understood as an obstacle or detrimental for the caring relationship and well-being since it lacks the necessary pliable interpersonal room. Such touch creates distance and alienation rather than closeness, trust and togetherness. If the potential of touch for caring is to be used and the threat of non-caring warded off, then the intentionality of touch must be balanced visavi the existential vulnerability of the individual. Therefore carers need to be open and attentive to the lifeworld of the patients to enhance their health-processes and avoid hurting them.

This thesis focuses on immigrants in Sweden. What experiences from the meeting with Swedish society do immigrants have and what meaning does the immigrant background have when they have been patients within the Swedish health and medical service? Former research about patients with an immigrant background can be divided into two perspectives. One which illuminates ethnically demarcated immigrant groups and specific needs. The other perspective has an individually adopted approach independently of the patients’ ethnical background. Here it is mainly the communication problems that are stressed, since these make it hard to understand the individual’s needs. The two empirical studies of the thesis start from an individualised perspective, a life world perspective. Research data have been collected through open interviews. The overall purpose was to develop a deepened understanding of what it means to live as an immigrant in Sweden and receive care. The aim of the pre-study was to examine immigrants’ experiences of participation in municipal home care. In the main study the overall purpose was used and two research questions were asked: What do persons with an immigrant background have to tell us about their situation in Swedish society? How does the situation as an immigrant in Sweden influence the experience of being a patient in Swedish health and medical care? The pre-study shows that participation means making demands and meeting caregivers who view the patient as an actor with the right to make his or her own decisions. One important postulate seems to be access to a good interpreter. To refrain from participation seems to be about adopting a passive attitude as a patient. It seems as if it is the caregivers who are the active ones and the ones setting the standards for the contents of the care. To experience not being invited to participation mainly seems to originate from the fact that the interviewees could neither understand nor make themselves understood. One consequence is that patients are just looked upon as carriers of a symptom. The main study shows that the interviewees’ existential existence as patients involves the whole life situation. Different forms of unsurmountable difficulties might reinforce each other. The ambition to establish oneself in a new home country might therefore be passivised. For patients with immigrant background earlier experiences from exposed situations seem to influence how the patients feel about their treatment. The additional knowledge is that problems seem to reinforce each other. Patients with an immigrant background must be treated as individuals. Every individual’s story has to be made visible. The thesis shows that caregivers ought to endeavour to understand the individual. To encourage dialogue, despite language problems, is of importance for the patient to be able to express his or her needs. The use of an interpreter may have a positive influence on these patients’ possibilities to exert an influence. This means that caregivers who consult an interpreter should build up their competence to communicate through an interpreter.

Chronic obstructive pulmonary disease (COPD) is one of the most widespread diseases globally. A commonly reported symptom is impaired nutritional status, which is often discussed in the literature as difficult to assess. Because nurses play a key role in the care of patients with COPD, knowledge needs to be supplemented with clinically relevant methods that can be used for identification of nutritional needs. The overall aim of this thesis is to investigate factors associated with the nutritional status of persons with COPD and to describe the assessment of nutritional status in different settings and for persons of varying ages. Both qualitative and quantitative methods were used. Two studies with descriptive and exploratory designs (I, II) and two studies with comparative (III), and correlational design (IV). In three of the studies participants were persons with COPD (I, III, IV), whereas one involved registered nurses (RNs). Qualitative data were collected using diaries (I), vignettes (II) and interviews (I, II) and analyzed using qualitative content analysis. Data collection (III, IV) included body size and body composition measurements, assessment of nutritional status using the Mini Nutritional Assessment (MNA), the Malnutrition Universal Screening Tool (MUST), the Evaluation of Nutritional Status (ENS), and lung function measurements. These were analyzed using statistical methods. The main findings from the interviews with 13 respondents in PHC in study I showed that eating difficulties alone do not cause reduced nutritional intake for persons with COPD. Eating is only one aspect in a chain of meal-related situations that involve additional physiological and psychological demands. Assessment of nutritional status, performed by 19 RNs, consisted mainly of single observations. For a half of the RNs it was more important to establish trustful relationships with patients than to give nutritional information, while the other RNs had different opinions on when it was best to provide nutritional information and assess nutritional status. Study III findings showed poor nutritional status for nearly half of the 50 older participants. Many who were identified as malnourished lived alone and were dependent on daily community services. Six out of the 81 participants in Study IV were similarly identified as malnourished by each of the three instruments (MNA, MUST and ENS). There was a significant correlation between each of the instruments and body composition, assessed as fat-free mass index (FFMI). The MNA Short Form (MNA-SF) incorrectly identified thirteen participants’ nutritional status as not needing attention for their nutritional status. To be evaluated as ‘in need of qualified help with nutrition’ by the ENS the respondents needed to be identified as malnourished by the MNA. A general conclusion is that nutritional status is complex for persons with COPD and is difficult to measure by currently recommended methods. Individuals’ experiences are important to elicit because some of their experiences, in combination with RNs’ judgement, might serve as a hindrance for nursing care and delay the sharing of important information. The methods currently recommended for identification of nutritional status should be used with caution, and assessment should not depend on one single method. The findings from this thesis can contribute to early accurate identification of nutritional status and prompt interventions that have importance for an improved disease trajectory and better quality of life for individuals with COPD.