Background: Tuberculosis (TB) and human-immunodeficiency virus (HIV) infections are intertwined through complex biological and social pathways that affect over one million people worldwide. Mitigation of the co-epidemic is undermined by a failure to integrate TB and HIV healthcare services as a result of critical clinical, operational and social challenges. The social challenges of TB/HIV coinfection and integrated care are least understood. Objectives: This research examines the social contexts of TB/HIV illness and related healthcare from the perspective of patients coinfected with TB and HIV. Methods: The study was set within a constructivist-interpretivist theoretical framework. Non-participant field observations and semi-structured in-depth interviews were held with 40 coinfected adults (24 women, 16 men) and 8 healthcare workers at 3 ambulatory clinics in KwaZulu-Natal, South Africa, providing varying models of TB and HIV care. Subjective meanings of illness and healthcare were analyzed in relation to patients’ social contexts. Findings and Interpretations: Coinfection exposes patients to a double and unequal form of social stigma around TB and HIV. Affected individuals construct dual identities and negotiate selective disclosure of TB over HIV in order to manage this double stigma. Their experiences with stigma are bound by social, structural and gendered inequalities, and mediate their decisions to disclose, access and adhere to medical care. Coinfection also exposes patients to pluralistic, disparate and fragmented forms of healthcare delivery. Experiences with stigma and with distinct cultures of TB and HIV care affect their decisions for integrated healthcare. While integration may allow for some technical and clinical efficiency, it may also heighten some patients’ social burden of illness as a result of HIV disclosure and stigmatization. Conclusion: Integration efforts should consider the social contexts of TB/HIV coinfection, social consequences of patients’ health decisions, and paradigms within which such efforts are set in the design and execution of successful interventions.

Background: Tuberculosis (TB) and human-immunodeficiency virus (HIV) infections are intertwined through complex biological and social pathways that affect over one million people worldwide. Mitigation of the co-epidemic is undermined by a failure to integrate TB and HIV healthcare services as a result of critical clinical, operational and social challenges. The social challenges of TB/HIV coinfection and integrated care are least understood. Objectives: This research examines the social contexts of TB/HIV illness and related healthcare from the perspective of patients coinfected with TB and HIV. Methods: The study was set within a constructivist-interpretivist theoretical framework. Non-participant field observations and semi-structured in-depth interviews were held with 40 coinfected adults (24 women, 16 men) and 8 healthcare workers at 3 ambulatory clinics in KwaZulu-Natal, South Africa, providing varying models of TB and HIV care. Subjective meanings of illness and healthcare were analyzed in relation to patients’ social contexts. Findings and Interpretations: Coinfection exposes patients to a double and unequal form of social stigma around TB and HIV. Affected individuals construct dual identities and negotiate selective disclosure of TB over HIV in order to manage this double stigma. Their experiences with stigma are bound by social, structural and gendered inequalities, and mediate their decisions to disclose, access and adhere to medical care. Coinfection also exposes patients to pluralistic, disparate and fragmented forms of healthcare delivery. Experiences with stigma and with distinct cultures of TB and HIV care affect their decisions for integrated healthcare. While integration may allow for some technical and clinical efficiency, it may also heighten some patients’ social burden of illness as a result of HIV disclosure and stigmatization. Conclusion: Integration efforts should consider the social contexts of TB/HIV coinfection, social consequences of patients’ health decisions, and paradigms within which such efforts are set in the design and execution of successful interventions.

Introduction Patients with intestinal failure (IF) develop problems of malabsorption and malnutrition associated with short bowel syndrome (SBS). Home parenteral nutrition (HPN) became available to treat these patients since the 1970s. There is a paucity of qualitative research on patients’ experiences in the UK. The study aim was to generate theory that explains the experiences of adults living with HPN and complex medication regimens. Method The grounded theory methodology was used to explore the experiences and to generate theory about this health intervention. Twelve participants were interviewed. The interviews were recorded and transcribed verbatim. The joint process of data collection and analysis followed the principles of constant comparative approach. Results The core categories of stoma care and HPN treatment were supported by the subcategories of maintaining stoma output, access to toilets, maintaining HPN infusion routine, access to technical help to set up HPN infusion, and general health changes. Strategy used to manage living with loss was demonstrated by the subcategory of maintaining daily activities and social interactions. Discussion The theory of living with loss suggests that patients with a stoma receiving HPN experience the sense of loss at home and in social situations. Opportunities for professional practice development are detailed along with implications for future research. Conclusions The findings resonate with the Kubler-Ross Model of the five stages of grief (Kubler-Ross, 1970). The theory of living with loss was generated by the use of the grounded theory methodology. This study identified opportunities for changes and improvement in clinical practice.

Introduction Patients with intestinal failure (IF) develop problems of malabsorption and malnutrition associated with short bowel syndrome (SBS). Home parenteral nutrition (HPN) became available to treat these patients since the 1970s. There is a paucity of qualitative research on patients’ experiences in the UK. The study aim was to generate theory that explains the experiences of adults living with HPN and complex medication regimens. Method The grounded theory methodology was used to explore the experiences and to generate theory about this health intervention. Twelve participants were interviewed. The interviews were recorded and transcribed verbatim. The joint process of data collection and analysis followed the principles of constant comparative approach. Results The core categories of stoma care and HPN treatment were supported by the subcategories of maintaining stoma output, access to toilets, maintaining HPN infusion routine, access to technical help to set up HPN infusion, and general health changes. Strategy used to manage living with loss was demonstrated by the subcategory of maintaining daily activities and social interactions. Discussion The theory of living with loss suggests that patients with a stoma receiving HPN experience the sense of loss at home and in social situations. Opportunities for professional practice development are detailed along with implications for future research. Conclusions The findings resonate with the Kubler-Ross Model of the five stages of grief (Kubler-Ross, 1970). The theory of living with loss was generated by the use of the grounded theory methodology. This study identified opportunities for changes and improvement in clinical practice.

I Sverige drabbas varje år ca 200-250 barn och ungdomar av sjukdomen juvenil idiopatisk artrit (JIA). JIA är en av de vanligaste orsakerna till kortvarig och långvarig funktionsnedsättning och försämring av livskvalitet under barnaåren. Hela familjen påverkas när en familjemedlem blir sjuk. Syfte: Syftet med denna studie var att belysa hur en långvarig sjukdom som JIA upplevs av barn, ungdomar och deras familjer. Metod: Metoden som användes var en allmän litteraturöversikt. Totalt inkluderades 7 kvantitativa och 5 kvalitativa artiklar. Resultat: Vid analysen identifierades ett huvudtema upplevelser av att vara annorlunda. Resultatet visar att upplevelserna av att leva med JIA är mycket individuella men gemensamt för många av familjerna är en känsla av att vara annorlunda. Konklusion: När ett barn eller ungdom drabbas av en långvarig sjukdom påverkas hela familjen. Livssituationen förändras, även föräldrarnas och syskonens livsvärld blir förändrad. Varje barn och ungdom som drabbas av sjukdomen JIA är unik och har sin egen livsvärld. Som sjuksköterska är det betydelsefullt att se hela individen och involvera dess familj i omvårdnaden. / In Sweden 200-250 children and youths are affected with juvenile idiopathic arthritis (JIA) every year. JIA is one of the most common causes of short-term and long-term disability and impairment of quality of life during childhood. The entire family is affected when a family member becomes ill. Aim: The aim with this study was to illustrate how a prolonged disease as JIA is experienced by children, youths and their families. Method: The method used was a general literature overview. In total 7 quantitative and 5 qualitative articles. Result: During analysis one main themes were identified. This was experiences of being different. The result showed that the experiences of living with JIA is individual but common for many of the families is a sense of being different. Conclusion: When a child or youth is struck by protracted disease, this also affects family members. The life situation is affected, and also the life situation for parents, brothers and sisters is changed. Every child and youth who is affected by JIA is unique, and has its own reality. As a nurse it is meaningful to see the entire individual, and to involve its family in to the nursing.

Bakgrund: Akutmottagningen innebär för många patienter den första kontakten i vårdkedjan. Underbemanning, stigande patientantal och färre vårdplatser innebär ofta längre väntetider och ökad press på vårdpersonalen. Hur patienten blir bemött av vårdpersonalen på akutmottagningen kan påverka den framtida tilliten för hälso- och sjukvården. Syfte: Syftet med den här litteraturstudien är att undersöka hur patienter upplever besök på akutmottagningar. Metod: För att besvara syftet utfördes en litteraturstudie med beskrivande design och systematisk ansats. Tolv originalartiklar, varav fyra kvantitativa och åtta kvalitativa, inkluderades i granskningen. Resultat: Sex teman identifierades: bemötande, kommunikation, information, makt, miljö och väntetider. Vårdpersonalens bemötande kan påverka patientupplevelsen både negativt och positivt. Patienter värdesätter god kommunikationsförmåga hos vårdpersonalen. Patienter anser att dem skulle dra nytta av att tillhandahållas mer information. Majoriteten av patienterna vill vara involverade i beslutsfattandet om sin vård men enbart en mindre del känner sig bekväma med att vara oense eller att ta initiativ till en diskussion. Hur patienterna upplevde akutmottagningens miljö påverkades av både lokalens utformning och de andra människorna som befann sig där. Att få en beräknad väntetid skulle få patienterna att bättre acceptera väntetiden. Slutsats: Resultatet visar att flertalet faktorer, både mänskliga handlingar och materiella ting, påverkar patientupplevelsen. Sjuksköterskan, vars bemötande och handlingar kan komma att prägla patientens syn på hela hälso- och sjukvården, måste vara medveten om sin maktposition över patienten och sträva efter att se patienten som en jämlike. / Background: For many patients, the emergency department means the first contact in the care chain. Understaffing, rising patient numbers and fewer care places often mean longer waiting times and increased pressure on care staff. How the patient is treated by the staff in the emergency department can affect future trust in the health care system. Aim: The aim of this literature study is to investigate how patients experience visits to emergency rooms. Method: To answer the purpose, a literature study was performed with a descriptive design and a systematic approach. Twelve original articles, four of which were quantitative and eight qualitative, were included in the review. Results: Six themes were identified: professional-patient relations, communication, information, power, environment and waiting times. The professional-patient relations can affect the patient experience both negatively and positively. Patients value good communication skills among healthcare professionals. Patients believe that they would benefit from being provided more information. Most patients want to be involved in decision-making about their care, but only a small proportion feel comfortable with disagreeing or initiating a discussion. How the patients experienced the emergency room's environment was affected by both the design of the room and the other people who were there. Getting an estimated waiting time would make patients more accepting of the waiting time. Conclusion: The results show that most factors, both human actions and material things, affect the patient experience. The nurse, whose treatment and actions may shape the patient's view of the entire health care system, must be aware of her position of power over the patient and strive to see the patient as an equal partner.

Bakgrund: Hjärtsvikt är en fatal sjukdom och innebär hjärtats oförmåga att möta kroppens metabola behov på grund av en inadekvat hjärtminutvolym. Då sjukdomen innebär en tilltagande symtombörda desto längre tiden går, rekommenderas en samtidig vård med palliativ inriktning. Målet med vårdformen är att förbättra livskvaliteten för att kunna leva så gott som möjligt. Syfte: Att ur ett patientperspektiv belysa aspekter som påverkar uppfattningen av den palliativa vården hos patienter med hjärtsvikt. Metod: En allmän litteraturöversikt med ett systematiskt tillvägagångssätt har genomförts med ändamålet att sammanställa och redovisa kunskapsläget inom det utvalda området. Resultat: Två kategorier identifierades, kunskapsaspekter och känslomässiga aspekter. Inom kunskapsaspekter identifierades det att patienter hade en bristande kunskap gällande hjärtsvikt men även gällande innebörden av palliativ vård. Inom kategorin känslomässiga aspekter betonade patienterna att känslan av att hopp fanns var av vikt för välmåendet. Patienter uttryckte att de såg på livets slutskede som något besvärligt och att inte veta när döden skulle komma orsakade stor ångest. Gällande döendet hade patienter genomfört praktiska planer såsom testamentering, men de hade inte uttryckt önskemål och preferenser inför vård i livets slutskede. Att få möjligheten att vårdas i hemmet bidrog till en känsla av trygghet för patienterna, men i motsats kunde det även upplevs otryggt. En anledning var att personalen inte visste hur hjärtsvikt skulle hanteras, vilket kunde föranleda sjukhusvistelser. Slutsats: Att drabbas av en hjärtsvikt var omvälvande för patienten. Utifrån var patienten befinner sig i bearbetningsprocessen var denne mer eller mindre mottaglig för information. Detta påverkade i sin tur hur patienten ställde sig till palliativ vård. / Background: Heart Failure is a fatal disease and describes the heart's disability to counter the body’s requirement because of an inadequate cardiac output. The disease amounts to a high level of symptoms, and because of it palliative care is recommended early in the process. The goal is to improve quality of life so that the patient can live as well as possible. Aim: Was to, from a patient perspective, highlight aspects that influence heart failure patients’ perceptions regarding palliative care. Method: A general literature review with a systematic approach has been carried out with the aim of compiling and reporting the state of knowledge within the selected area. Results: Two categories were identified, aspects of knowledge and emotional aspects. Within aspects of knowledge, it was identified that patients had a lack of knowledge regarding heart failure but also regarding the meaning of palliative care. Within the category of emotional aspects, patients emphasized that the feeling of hope was important for their well-being. Patients expressed that they saw the end of life as something difficult. Regarding dying, patients had carried out practical plans such as writing a will, but they had not expressed wishes and preferences for end-of-life care. Having the opportunity to be cared for at home contributed to a feeling of security for the patients. Receiving care at home contributed to the patient not going to the hospital as often. However, being cared for at home could not completely relieve the anxiety. There was a lack of knowledge among the staff regarding how heart failure should be handled and treated. Conclusion: Suffering from heart failure was upsetting for the patient. Depending on where the patient was in the processing process, they were more or less receptive to information. This in turn influenced how the patient approached palliative care.

Bakgrund: Varje år dör omkring 90 000 personer i Sverige och de flesta har behov av palliativ vård. Den enskilde individen skall i största möjliga mån få avgöra om denne vill dö hemma eller inom den slutna vården. Historiskt sett har den palliativa vården behandlat personer med cancersjukdom men har med tiden utvecklats till att behandla flera typer av sjukdomstillstånd. Syfte: Syftet med föreliggande studie var att beskriva hur vuxna patienter upplever den palliativa vården i hemmet, samt att studera de valda artiklarnas datainsamlingsmetod. Metod: Föreliggande studie har en deskriptiv design. Studiens resultat baseras på elva vetenskapliga artiklar, tio med kvalitativ ansats och en med mixad ansats. Samtliga artiklar granskades av båda författarna och färgmarkerades beroende på innehåll. Artiklarna identifierades genom databaserna Cinahl och Pubmed. Huvudresultat: Den palliativa vården i hemmet upplevdes till stor del som positiv av patienterna. Det värderades högt att ha sina närstående nära och att få vistas i sin trygga hemmiljö den sista tiden i livet. Det framkom även att de palliativa patienterna var oroliga över att vara en börda för sina närstående. Genom att ha sjukvårdare i hemmet samt stöd från närstående gavs möjlighet att utföra vardagliga aktiviteter på egen hand, som visade sig generera livskvalitet. Värdighet hos de palliativa patienterna beskrevs genom begreppen integritet, välbefinnande och självbestämmande. God kommunikation och kontinuitet upplevdes som viktiga faktorer för de patienterna. Slutsats: Palliativa patienter som vårdats hemma såg i hög grad positivt på den vård de erhållit. De upplevde att samarbete mellan sjukvården och deras närstående är en förutsättning för trygg vård i hemmet. Hälso- och sjukvård bör prioritera dessa patienters önskan om att få vårdas och dö hemma eftersom detta genererar livskvalitet. Föreliggande studies resultat ger en tydlig indikation på utvecklingsområden inom palliativ vård. / Background: Every year, about 90 000 people in Sweden die and most of them are in need of palliative care. The individual should as far as possible be able to decide if he or she wants to die at home or in hospice care. Historically, palliative care was meant to treat people with cancer but has gradually evolved to treat several types of disorders. Purpose: The purpose of this study was to describe how adults perceive palliative care in their home, as well as to study the selected articles data collection method. Method: The present study has a descriptive design. The study results are based on eleven scientific articles, ten with qualitative approach, and one with a mixed approach. All articles were reviewed by both authors and color marked depending on the content. The articles were identified through databases CINAHL and Pubmed. Main Results: The palliative care at home was perceived largely as positive among patients. It was highly valued having their relatives close and to reside in their familiar home environment at the end of life. It also emerged that the palliative patients were concerned about being a burden to their families. By having paramedics in their home as well as support from relatives they were given the opportunity to be able to handle everyday activities on their own, which turned out to generate quality of life. Dignity of the palliative patients was described by the concepts of integrity, well-being and self-determination. Good communication and continuity was seen as important factors for the patients. Conclusion: Palliative patients who received care at home looked largely positive about the care they received. They felt that the cooperation between health care and their families was essential for safe care in their home. These patients' desire to be cared for and die at home should be a priority as it will lead to increased quality of life. Results of this study gives a clear indication of development areas in palliative care.

Anorexia Nervosa is a psychiatric illness with peak onset in ages 14-17. Most cases recover within a few years, but the illness can have a fatal outcome or long duration. Multifactor causes of anorexia nervosa include genetics, personality, family, and socio-cultural factors. This study measures mortality, recovery from anorexia nervosa, and psychosocial outcome of patients with adolescent onset anorexia nervosa that were treated in Child and Adolescent Psychiatry in northern Sweden from 1980 to 1985. In addition, this study assesses the predictive value of background variables and studies perfectionism in relation to recovery. Finally, this study looks at how patients understand the causes of their anorexia nervosa and how they view their recovery process. Follow ups were made 8 and 16 years after initial assessment at CAP. Quantitative and qualitative methods were used. These included a semistructured interview, DSM diagnostics of eating disorders (including GAF), and the self-assessment questionnaires EDI and SCL-90. The interview also contained questions about causes and recovery. Recovery increased from 68% to 85% from first to second follow-up and the mortality rate was 1%. Somatic problems and paediatric inpatient care during the first treatment period could predict long-term outcome of eating disorders. Most former patients had a satisfying family and work situation. At both follow-ups, individuals with long-term recovery had a lower level of perfectionism than those that recovered later. On individual levels, eating disorder symptoms and psychiatric symptoms decreased during recovery, whereas the levels of perfectionism stayed the same. Causes were attributed to self, family, and socio-cultural stressors outside of the family. The most common self-reported causes were high own demands and perfectionism. All recovered subjects could remember and describe a special turning point when the recovery started and 62% saw themselves as an active agent in the recovery process. Supportive friends, treatment, activities, family of origin, boyfriend, husband, and children were also helpful in the recovery process. Compared to other outcome studies, the results were good. In spite of the good outcome, some individuals had a long duration of illness and were not yet fully recovered after 16 years of follow-up. Predictors of non-recovery were related to initial somatic problems. Levels of perfectionism were associated to recovery and patients with initial high levels of perfectionism may need more complex treatment strategies. Results from the study also implied that one should stimulate the patients’ social contacts and their sense of self-efficacy in their recovery- process.

Background: Patients in the emergency department are not always satisfied with the care received and the nursing care in the emergency department is sometimes described as instrumental and non-holistic. Structured quality improvement work and evidence-based practice are needed. Aim: The overall aim was to emphasize general patients in the emergency department to enhance the knowledge on how they perceive the quality of care and how the care could be improved through collaboration with the healthcare professionals. Methods: Four studies, with quantitative and qualitative designs, were conducted in a Swedish emergency department. Two hundred patients answered a questionnaire, after which 22 healthcare professionals comprising five focus groups were interviewed, and finally 200 patients were included in an intervention study. Results: The following five areas for improvement were identified: “information, respect and empathy”, “pain relief”, “nutrition”, “waiting time” and “general atmosphere”. Of these areas, the healthcare professionals prioritized “information, respect and empathy”, “waiting time” and “pain relief” to be highlighted in the quality improvement work. Although goals and suggestions for changes were stated, barriers to quality improvement at different levels in the health care were detected. The results of the intervention study showed that structured nursing assessment of the patients’ abdominal status and nurse-initiated intravenous opioid analgesic could increase frequency of analgesic and reduce time to analgesic in the emergency department. Patients perceived lower pain intensity and improved quality of care in pain management. Conclusions: An uncomplicated nursing intervention, related to pain management, based on the results from a patient questionnaire and interviews with healthcare professionals, can improve the care process and pain management in the emergency department, as well as patients’ perceptions of the quality of care in pain management. To succeed with continuous quality improvement work, barriers to change should be addressed.