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Hemlöshet börjar bli en ökande del av det amerikanska samhället. Få studier har gjorts där den hemlöse själv beskriver sitt behov av omvårdnad och sjukvård. Denna studie syftar till att belysa vad amerikanska hemlösa uttryckt som sitt dagliga behov av omvårdnad och sjukvård. Graneheim och Lundmans (2004) kvalitativa innehållsanalys har använts för att bearbeta data. Med de existerande levnadsomständigheterna för hemlösa uppkommer behov och komplikationer som riskerar att orsaka ett ökat behov av sjukvård. I deras sökande efter behövlig sjukvård möttes de av utmaningar. I datamaterialet upptäcktes negativa yttringar likväl som uttryck av behov av omvårdnad som blivit tillgodosedda. Slutsats, hemlösa är i ett stort behov av omvårdnad och sjukvård i sitt dagliga liv. Sjukvårdssystemet behöver förändra sitt tillvägagångssätt och utvecklas för att bättre kunna möta de behov som finns bland dessa personer. / Homelessness is becoming an increasing part of the American society. Few studies have been done describing what the homeless themselves express as needs in care and healthcare. The aim in this study is to describe how homeless American individuals express needs of care and healthcare in their daily life. In doing so literature were analyzed by Graneheim and Lundmans (2004) qualitative content analysis. With the living conditions of the homeless there arose needs and complications, having the potential to cause health care needs. There were obstacles in their way while trying to receive health care. Negative expressions as well as fulfillment in care were also discovered in the data. In conclusion the homeless individuals are in great need of care and health care in their daily lives. The health care system needs to broaden its views and approaches when it comes to caring for these individuals to be able to meet their conditions better.

The main aims were to: explore whether there is a relation between doctors’ ability to identify patients’ worry and wish for information and self-efficacy with regard to communicating with patients about difficult matters; describe which cues doctors consider when estimating patients’ worry and wish for information, and investigate whether there is a relation between patients’ satisfaction with doctors’ care and patients’ psychosocial function. Eleven doctors and 69 patients (of which 36 patients participated in the longitudinal study) with carcinoid tumours participated. Doctors’ self-efficacy, and ability to identify patients’ worry/wish for information were investigated at patients’ first admission. Doctors were interviewed about which cues they considered when estimating patients worry/wish for information. Patients’ satisfaction with care (CASC SF 4.0) and psychosocial function (EORTC QLQ-C30, HADS) were measured longitudinally, during the first year after diagnosis. Doctors reported higher self-efficacy when showing good ability to identify patients’ wish for information, than when showing less good ability, overestimated patients’ worry and underestimated patients’ wish for information. Doctors considered patients’ verbal behaviour and body language together with knowledge and experience when estimating patients worry and wish for information. Patients who met doctors showing good ability to identify their wish for information, reported a higher cognitive function than patients who met doctors showing less good ability. At all assessments patients expressed high satisfaction with doctor’ care and patients’ satisfaction did not change over time. Patients’ satisfaction with doctors’ care were related to their psychosocial function shortly after the first three admissions to specialist care. Patients with carcinoid tumours in some respects reported a worse HRQoL than the general Swedish population. Fatigue, diarrhoea, limited possibilities to work/pursue daily activities, and worry that the illness will get worse were among the most prevalent, and worst, aspects of disease- and treatment related distress.

The main aim of this thesis was to longitudinally investigate the potential occurrence of posttraumatic stress disorder (PTSD) among parents of children on cancer treatment (Study I). Additional aims were to describe parents’ perceptions of emotional support and satisfaction with the child’s care (II), perceptions of the child’s symptom burden (III), and parents’ stories about having a child on cancer treatment (IV). The design was prospective, longitudinal, and data was collected at: one week, two months, and four months after the child’s diagnosis and one week/six months after the end of successful treatment/transplantation. Parents (N=259) were consecutively included during the years 2002-2004 and answered questionnaires and open-ended questions over the telephone. Parenting a child with cancer is a very demanding, potentially traumatic, event. Approximately a fourth of the parents report symptoms corresponding to PTSD. The symptom level is related to being a mother, not working before the child’s diagnosis, and to previous trauma experience. Less than half of those who report a need to talk with a psychologist report having had the opportunity to do so. Parents are generally satisfied with the care and report the highest satisfaction with the technical care. Emotional distress, fatigue, nutrition, and pain are, according to parents, the most problematic symptom areas for their children. Pain is identified as especially problematic. Parents in paediatric oncology care should be acknowledged as potential care-recipients. In order to prevent development of PTSD parents of children on cancer treatment should be supported to maintain an ordinary life, for example pursue work and/or activities, and to get sufficient rest. As a means towards this parents need help with e.g. household duties and childcare. In addition to this, parents in approximately two fifths of the families need extended psychosocial support aiming at reducing posttraumatic stress.

Ett övergripande syfte med avhandling var att belysa den levda erfarenheten av att vara i medelåldern och närstående till en person som insjuknat i stroke för första gången och studera de närståendes erfarenheter av förändringen över tid under det första året efter utskrivning till hemmet, samt att belysa innebörden av medelålders makars levda erfarenhet av relationen till en partner som insjuknat i stroke; under det första året. Avhandlingen omfattar 4 delstudier (I-IV) som sammantaget utgör en longitudinell studie. Tio närstående (40 - 64 år) till personer insjuknade i stroke (förstagångs insjuknande) med förväntat hjälpbehov överstigande 6 månader, inkluderades konsekutivt i studien och följdes under ett år efter utskrivning till hemmet. Narrativa intervjuer utfördes en månad (I, n=10), sex månader (II, n=9) och ett år (III, n=9) efter utskrivning till hemmet. Bland de närstående i delstudie I-III fanns fyra kvinnliga makar (gifta; n=2, sambo; n=2) som utgjorde deltagarna i delstudie IV. För att analysera data användes en fenomenologisk hermeneutisk tolkningsmetod (I, IV) och kvalitativ innehållsanalys (II, III). Avhandlingen visar på att vara i medelåldern och närstående till en person som insjuknat i stroke, efter utskrivningen till hemmet, innebär att gå igenom en förändringsprocess i olika steg. Upplevelsen var att en månad efter utskrivningen kämpa för att inte tappa fotfästet i en otrygg livssituation, där de upplevde ett främlingskap inför situationen, sig själv och personen som insjuknat i stroke. Ändå svarade de närstående oreflekterat an ett krav på ansvar och omsorg (I, IV). Efter sex månader visade de närstående på en kamp för att integrera förändringarna orsakade av stroke till det dagliga livet, förlika sig med förlusterna och att hitta balans och en ny normalitet (II). Makarna förde en kamp för att återfå känslan av samhörighet med sin partner och hitta tillbaka till sin egen identitet som maka, vilket bara var möjligt i frånvaro av en vårdarroll (II, IV). Efter ett år tvingades de närstående att erkänna, lära sig hantera och förlika sig med förändringarna orsakade av strokeinsjuknandet (III). Makarna fick lämna en ‛bild‛ av hur deras partner en gång varit. En trygg relation i samvaro och jämlikhet med en känsla av ‛vi‛ förändrades och blev främmande och ojämlik och ersattes med en känsla av ‛jag‛ och ‛du‛. För att härda ut måste makarna omvärdera relationen till sin partner och målen i livet. Även om partnern fortfarande var i livet visade makarna en sorg och ett lidande beroende på förlusten av den relation de en gång haft till personen som insjuknat i stroke (IV). Avhandlingen visar även att de närstående inte upplevde sig varit sedda och bekräftade av den professionella vårdpersonalen i sin egen situation som närstående. Vårdens fokus upplevdes hela tiden enbart vara den sjuke och främst de fysiska förändringarna hos personen med stroke. De närståendes upplevelse var av oförståelse för innebörden av de kognitiva och emotionella förändringarna hos den sjuke (I, II, III). De närstående gav så småningom också upp sin strävan att bli bekräftade vilket innebar att bära på ett lidande som inte blev synliggjort (III). En annan del av förändringsprocessen var att de närstående gick ifrån självförnekelse med fokus på den som insjuknat och nuet (I), till en medvetenhet om att ta egna behov i beaktande (II) och att även fokusera på eget välbefinnande för att orka i en framtid (III). Avhandlingen visar att de medelålders närstående går igenom en transitionsprocess, där upplevelser av förluster, förändringar, lidande och sorg finns relaterat till; dåtid, nutid och framtid. De närståendes upplevelse av oförståelse och brist på känsla av bekräftelse i deras livssituation under året efter utskrivningen till hemmet, kan leda till en känsla av ensamhet och övergivenhet både inom de närstående själva, men också i förhållande till andra och världen utanför.

The purpose of this thesis is to describe what it is like to suffer from malignant lymphoma and to highlight the care given to these patients. A reflective lifeworld approach, founded in phenomenological philosophy, has been used. Data have been collected using interviews and have been analyzed using essence-seeking analysis. The results are founded upon three empirical studies and a philosophical excursus. The results are presented in four sections. The thesis describes how patients with malignant lymphoma live in limbo characterized by existential uncertainties, partly caused by the mortal threat of the disease and by failings in the actions of the healthcare staff. Patients fear dying when suffering from malignant lymphoma, regardless of whether the disease is a genuine medical threat to their life. Thus, there is a substantial need for existential support for these patients. However, the results show that deficiencies in existential support can lead to patients feeling objectified, which in turn increases their existential uncertainties. Care that is solely directed towards the physiological body and excludes the human as a subject can be experienced as a disparagement. Care that includes the patients’ lifeworld provides alleviated suffering and a possibility for the patients themselves to take an active part in the health process. Despite the healthcare staff’s genuine ambition to alleviate the suffering, patients’ existential questions are met with a degree of conflict; on the one hand they are a natural part of healthcare, and on the other the questions are of such character that they are not part of professional healthcare. A healthcare culture that does not fully acknowledge the importance of existential questions appears to be one of the greatest obstacles to a holistic healthcare approach. Furthermore, there appears to be a lack of shared strategies among the healthcare staff when meeting the patients’ existential questions. A conflict arises in an unnecessary battle between biology and existence, which in turn increases the patients’ existential insecurities. Medical knowledge is insufficient in caring for patients with malignant lymphoma. An understanding of caring science is needed in order for the care to become caring and able to meet the needs as described by patients with malignant lymphoma. Healthcare staff most be provided with sufficient support to meet the patients’ existential questions. The organization of healthcare is characterised by being a culture in which existential questions are not given sufficient attention. It seems that healthcare staff give priority to medical/technical tasks rather than conversations of existential character.

This thesis is focusing on the lived experience of dementia. Both living with a partner as well as living alone. There is no unequivocal picture of how it is to live with dementia and few studies have been carried out in homes of afflicted persons. A deeper understanding of how it is to live with dementia can be a good starting-point for caring and the organisation of care.    The aim of this thesis is to describe, clarify and explain the lived experience of dementia from a lifeworld theoretical point of view. Another aim is to illuminate how decision makers look upon persons with dementia, their life and their care. Interviews and observations have been used to collect data. Participating informants have been couples with one partner suffering from dementia, persons with dementia living alone, politicians, administrators and social workers. Data was analysed with a phenomenological and a hermeneutical approach.   To live as a couple where one part has dementia (study 1) implies to live in a heteronomous existence where both the person with dementia and the partner become strangers in a world that should be the most well-known and familiar. The couple’s existence is narrowed and controlled by the impact of the dementia disease and the existence  is characterised of hopelessness and homelessness.   To live alone with dementia (study 2) means to live with a broken identity when the person with dementia gradually loses the memory of himself and his life. It becomes a life where the world of the individual is reduced to a quiet background that does not demand attention. The person with dementia does not longer know how he or she should relate to the world. The existence is characterised by a strong sense of loneliness and only a vague knowledge of the situation. The person with dementia longs for other people and gets a sense of boredom in the existence.   The comprehensive interpretation (study 3) shows that life with dementia is characterised by a gradual loss of meaning in life due to a disturbed intentionality. With disturbed intentionality the person with dementia gets increasingly more difficulties in understanding the meaning of the use of everyday objects. The person with dementia fights this and tries to create meaningfulness in the existence – something which gets very difficult and strenuous in time, since even the easiest everyday chores have to be thought through to make sense and even to be accomplished. The effort can in time become overpowering for the person with dementia who then stops doing the chores and becomes passive.   Politicians, administrators and social workers (study 4) are well aware that dementia gives suffering to the afflicted and the partner. The care is not designed to meet their needs for home care, and the decision makers don’t know how to change this. The person with dementia becomes like an object when the social workers don’t includes them in a dialogue about their needs and care. The partner is left alone in solving difficult problems and in making difficult decisions.   The theory of intentionality can help the professionals in the care of persons with dementia. By helping the cared-for-person to ‘stretch the intentional threads’ the caregivers can give the person a possibility to be rooted in the world. A care that supports intentionality and identity and reaches all the way in to the homes of the person with dementia would improve their situation and increase their well-being. This is possible when engaging the person in every-day chores that promote meaning. This kind of care contributes to the possibility for the person with dementia to be rooted in language, time and space.

Relatives may experience a difficult and demanding situation when the patient is critically ill. During the period in the intensive care unit (ICU), the relatives may be subject to strong emotions of an existential nature, and the situation may involve several stressors as a result of changed roles, responsibilities and routines. These emotional stress experiences may result in weakened mental and physical functioning on the part of the relatives. During the patient’s rehabilitation at home the relatives are expected to provide care-giving assistance, which may lead to a further deterioration in their already weakened mental and physical functioning. The general aim of the thesis was to develop a theoretical understanding of coping approaches and social support experiences of relatives of critically ill patients, both in the ICU and at home. In order to gain an understanding of these areas it was deemed important to search for knowledge by means of qualitative methods, using grounded theory methodology, simultaneous concept analysis and qualitative content analysis. A total of 32 relatives of critical care patients participated in the studies. The findings of study I revealed that relatives of critically ill patients coped with their situation by alleviating, recycling, mastering or excluding their feelings during the ICU stay. The critical factors behind their choice of coping approach were their social circumstances, previous experiences of care and/or caring and how they apprehended the situation. In study II, during the patients’ recovery period at home, the relatives coped with their situation by accepting, volunteering, sacrificing or modulating. The critical factors in this period were the physical and psychological state of the relatives, previous experiences of care and/or caring and the psychological condition of the patient. A coping model was developed in study III, based on the coping concepts generated in studies I and II. In this model, the characteristics of each coping approach were systematised into different determinants in order to highlight the inherent process. The analysis of the relationship between the various coping approaches revealed differences in adaptation to the stressful situation. In terms of coping effectiveness, adaptation was associated with social support and health outcome. In the extended version of the coping model, with its dual perspective of the maladaptive-adaptive coping continuum and the weak-strong social support continuum, the degree of effectiveness of each coping approach was illustrated in relation to the others as well as to social support. In study IV and its Addition, a theoretical understanding of the phenomenon of what relatives experienced as supportive was developed. Support was perceived as empowerment by means of internal and external resources in the form of trusting oneself, encountering charity and encountering professionalism. The sense of empowerment permitted the relatives to experience their situation as safer and easier to control. The three support dimensions with their components and characteristics were illustrated in the empowerment model. These four studies have developed knowledge that may provide healthcare professionals with an understanding of the coping approaches and social support experiences of relatives during the critically ill patient’s ICU stay and recovery period at home. The association revealed between coping effectiveness, social support and health outcomes may draw attention to the relatives’ situation as well as to the possibility of enabling relatives to endure the patient’s entire illness and recovery period by enhancing the factors that promote effective coping. The three models may together form the basis for the development of a support programme for relatives of critically ill patients that encompasses the whole course of illness and recovery, which means that both institutional and community-based care would be involved.

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 (>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.

The overall aim of this thesis was to investigate recovery in the relationshipbetween couples following an acute myocardial infarction [AMI]. An additionalaim was to compare differences over time regarding hope and health‐relatedquality of life [HRQoL] for both patient and partner. The thesis is based on fourempirical studies (I‐IV), and has a longitudinal design employing both qualitativeand quantitative methods. A purposive sample was recruited comprising 15couples in which one partner had been diagnosed with an AMI. Study I wascarried out as individual tape‐recorded interviews aimed at describing thepatient´s and their partner´s experiences after hospital discharge. Study II alsoused individual tape‐recorded interviews, this time with the aim of describing andinterpreting the couple´s thoughts and expectations about their future life after thepatients’ discharge. Study III used the HHI‐S and SF‐36 measures to comparechanges over time in self‐rated hope and health‐related quality of life, anddifferences between patients’ ratings and their partner´s. Study IV used repeatedindividual tape‐recorded interviews with the aim of interpreting the couples´narratives about their relationship and daily life. The data were analysed andinterpreted using a number of qualitative content analysis methods (I, II, IV) anddescriptive and comparative statistics (III).Overall, the couples´ recovery from an AMI in the two years after an AMI consisted of a striving to reach some kind of balance and stability in their currentlife situation. The period after discharge from the hospital involved understandingthe importance of the home as a place in which one feels at home and which bringsa feeling of safety, experiencing the phenomenon of security and being at homewithin oneself, and seeking normalisation in returning to an ordinary life (I). Thecouples´ thoughts about their future lives were either optimistic, taking an activeapproach, or pessimistic, taking a wait‐and‐see approach. The couples could bedivided into four positions in terms of their visions of the future: life companions,who were in concordance regarding their future; tightrope walkers, who had incommon a need to reprioritise what they considered important in their future;pathfinders, who had in common an undefined vision of their future and observers, who saw their future including both physical as well as sociallimitations (II). Self‐rated hope and HRQoL both improved over time, but few ofthese improvements were statistically significant, and I found no statistically groupeffects. Estimation of the MDC index revealed that neither HHI‐S nor SF‐36measures stable traits (III). Finally, the repeated interviews revealed how thecouples viewed their daily life, mutual relationships and roles in their relationshipVIIover time. There was an abundant variation in a number of the couples´ storiesabout their relationship and daily life during the recovery period (IV).In conclusion, it is clear that what happen to one party in a relationship influencesthe other party. The couples in the studies showed improvements in both hope andhealth‐related quality of life over time. The HHI‐S and SF‐36 measures seemed tobe sensitive to and affected by the current situation. Going through an AMI is alife‐changing event that makes it necessary for the couple to make adjustments andadapt to their new situation. Different couples have different approaches tohandling this situation; no two couples are the same, and every couple willperceive and deal with the AMI differently. An AMI starts a process of transition,and over time a couple affected by AMI will undergo external as well as internal changes. / Avhandlingens övergripande syfte var att undersöka återhämtning i parrelation efter hjärtinfarkt. Ett ytterligare syfte var att jämföra skillnader avseende hopp och hälsorelaterad livskvalitet över tid men också emellan patienter och deras partners.Avhandlingen baseras på fyra delstudier (I‐IV), och har en longitudinal designmed både kvalitativa och kvantitativa metoder. Ett ändamålsenligt urval av 15 par rekryterades där en i parrelationen diagnostiserats med akut hjärtinfarkt. DelstudieI genomfördes med individuella bandinspelade intervjuer med syfte att beskrivapatienter och deras partners erfarenheter efter utskrivning från sjukhus eftergenomgången hjärtinfarkt. Delstudie II använde också individuella bandinspelade intervjuer, den här gången med syfte att beskriva och tolka parens tankar ochförväntningar kring deras framtid efter att patienten skrivits ut från sjukhus.Delstudie III använde instrumenten HHI‐S och SF‐36 för att jämföra skillnader av självskattat hopp och hälsorelaterad livskvalitet över tid och emellan patienter och deras partners. Delstudie IV använde upprepade bandinspelade intervjuer medsyfte att tolka parens berättelser kring deras relation och det dagliga livet. Data haranalyserats och tolkats med kvalitativ innehållsanalys på olika sätt (I,II,IV) ochmed såväl deskriptiv som jämförande statistik (III).Avhandlingen visar att parens återhämtning efter hjärtinfarkt under en period avtvå år omfattar en strävan efter att uppnå någon form av balans och stabilitet i denrådande livssituationen. Perioden efter utskrivning från sjukhus innebar enförståelse för hur viktigt hemmet är som plats för att känna sig hemma eller för att skapa en känsla av trygghet samt erfarenheter av fenomenet trygghet och attkänna sig hemma i sig själv. Slutligen sökte paren efter normalisering för att återkomma till det vanliga livet (I). Parens tankar kring deras framtid var antingenoptimistisk, en aktiv inställning, eller pessimistisk, en vänta ‐ och ‐ se inställning.Paren kunde också grupperas i fyra positioner som beskrev deras visioner omframtiden. De som kallades livskamrater syntes vara i samklang vad gällde återhämtning, balanskonstnärerna hade gemensamt ett behov av att omprioriter a vad som var viktigt för framtiden, de som var gemensamt för de som kallades stigfinnare var deras odefinierade/oklara bild av framtiden och slutligenobservatörerna såg sin framtid omfatta såväl fysiska som sociala begränsningar(II). Både självrapporterat hopp och hälsorelaterad livskvalitet förbättrades övertid, men få av dem var statistiskt signifikanta och inga statistiska gruppeffekterhittades. Beräkning av MDC index visade att varken HHI‐S eller SF‐36 mäterstabila dimensioner (III). Slutligen visade de upprepade intervjuerna hur paren sågpå dagligt liv, den inbördes relationen och roller i relationen över tid. Det fanns enIXrikedom av variationer i parens berättelser om deras relation och det dagliga livetunder återhämtningsprocessen (IV).Till sist framträder det klart att det som händer den ene i relationen fårkonsekvenser för den andre. Paren i studierna visade på att det skeddeförbättringar vad gäller både hopp och hälsorelaterad livskvalitet över tid. BådeHHI‐S och SF‐36 är instrument som synes vara känsliga för och påverkade av denrådande situationen. Att gå igenom en hjärtinfarkt är en livsavgörande händelsesom fodrar att paren ställer in sig på och gör anpassningar till en ny situation.Paren har dock olika sätt att handskas med den nya situationen och det finns intetvå par som är lika, och inte heller uppfattar och hanterar de hjärtinfarkten i vardagen och i relationen på samma sätt. En hjärtinfarkt startar en transitionsprocess och över tid genomgår paren såväl yttre som inre förändringar.