Challenges to improve inter-professional care and service collaboration for people living with psychiatric disabilities in ordinary housing

The aim of this study was to describe health care- and social service professionals' experiences of a quality-improvement program implemented in the south of Sweden. The focus of the program was to develop inter-professional collaboration to improve care and service to people with psychiatric disabilities in ordinary housing. Focus group interviews and a thematic analysis were used. The result was captured as themes along steps in process. (I) Entering the quality-improvement program: Lack of information about the program, The challenge of getting started, and Approaching the resources reluctantly. (II) Doing the practice-based improvement work: Facing unprepared workplaces, and Doing twice the work. (III) Looking backevaluation over 1 year: Balancing theoretical knowledge with practical training, and Considering profound knowledge as an integral part of work. The improvement process in clinical practice was found to be both time and energy consuming, yet worth the effort. The findings also indicate that collaboration across organizational boundaries was broadened, and the care and service delivery were improved.

Partner relationship in couples living with atrial fibrillation

The aim of this thesis was to describe and explore how the partner relationship of patient–partner dyads isaffected following cardiac disease and, in particular, atrial fibrillation (AF) in one of the spouses. The thesis is based on four individual studies with different designs: descriptive (I), explorative (II, IV), and cross-sectional (III). Applied methods comprised a systematic review (I) and qualitative (II, IV) and quantitative methods (III). Participants in the studies were couples in which one of the spouses was afflicted with AF. Coherent with a systemic perspective, the research focused on the dyad as the unit of analysis. To identify and describe the current research position and knowledge base, the data for the systematic review were analyzed using an integrative approach. To explore couples’ main concern, interview data (n=12 couples) in study II were analyzed using classical grounded theory. Associations between patients and partners (n=91 couples) where analyzed through the Actor–Partner Interdependence Model using structural equation modelling (III). To explore couples’ illness beliefs, interview data (n=9 couples) in study IV were analyzed using Gadamerian hermeneutics. Study I revealed five themes of how the partner relationship is affected following cardiac disease: overprotection, communication deficiency, sexual concerns, changes in domestic roles, and adjustment to illness. Study II showed that couples living with AF experienced uncertainty as the common main concern, rooted in causation of AF and apprehension about AF episodes. The theory of Managing Uncertainty revealed the strategies of explicit sharing (mutual collaboration and finding resemblance) and implicit sharing (keeping distance and tacit understanding). Patients and spouses showed significant differences in terms of self-reported physical and mental health where patients rated themselves lower than spouses did (III). Several actor effects were identified, suggesting that emotional distress affects and is associated with perceived health. Patient partner effects and spouse partner effects were observed for vitality, indicating that higher levels of symptoms of depression in patients and spouses were associated with lower vitality in their partners. In study IV, couples’ core and secondary illness beliefs were revealed. From the core illness belief that “the heart is a representation of life,” two secondary illness beliefs were derived: AF is a threat to life, and AF can and must be explained. From the core illness belief that “change is an integral part of life,” two secondary illness beliefs were derived: AF is a disruption in our lives, and AF will not interfere with our lives. Finally, from the core illness belief that “adaptation is fundamental in life,” two secondary illness beliefs were derived: AF entails adjustment in daily life, and AF entails confidence in and adherence to professional care. In conclusion, the thesis result suggests that illness, in terms of cardiac disease and AF, affected and influenced the couple on aspects such as making sense of AF, responding to AF, and mutually incorporating and dealing with AF in their daily lives. In the light of this, the thesis results suggest that clinicians working with persons with AF and their partners should employ a systemic view with consideration of couple’s reciprocity and interdependence, but also have knowledge regarding AF, in terms of pathophysiology, the nature of AF (i.e., cause, consequences, and trajectory), and treatments. A possible approach to achieve this is a clinical utilization of an FSN based framework, such as the FamHC. Even if a formalized FSN framework is not utilized, partners should not be neglected but, rather, be considered a resource and be a part of clinical caring activities. This could be met by inviting partners to take part in rounds, treatment decisions, discharge calls or follow-up visits or other clinical caring activities. Likewise, interventional studies should include the couple as a unit of analysis as well as the target of interventions.

Using health-related quality of life instruments for children with long-term conditions : On the basis of a national quality registry system

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments. Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system. Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings. Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations. Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

Att leva med HIV/AIDS i Norden

Bakgrund: Humant immunbristvirus, HIV, är ett virus som angriper kroppens immunsystem. Acquired immunodeficiency syndrome, AIDS, utvecklas från HIV efter lång tid utan behandling. I samhället råder det okunskap och rädsla kring sjukdomen vilket skapar stigmatisering och diskriminering som dagligen påverkar de som lever med HIV/AIDS. Attityden mot HIV-smittade personer är hos många negativ. Det finns sjuksköterskor som inte vill behandla HIV-smittade på grund av rädsla och okunskap. Att få diagnosen är livsomställande och att handskas med det är inte lätt. Syfte: Syftet var att beskriva hur det är att leva med HIV/AIDS i Norden. Metod: Litteraturöversikten baserades på sex kvantitativa och sju kvalitativa artiklar för att få en fördjupad kunskap och en överblick över kunskapsläget för hur det är att leva med HIV/AIDS i Norden. Resultat: I resultatet framkommer det tre kategorier som tillsammans ger en överblick om hur det är att leva med HIV/AIDS. Dessa kategorier är; anpassning till ett nytt liv, hålla hemligt eller komma ut och begränsad sexualitet. Stigmatisering påverkade personernas syn på sig själva och deras beslut kring avslöjandet av sjukdomen. Slutsats: Personer som lever med HIV bemöts ofta med okunskap, fördomar och avståndstagande, därför är bemötandet avgörande. Litteraturöversikten bidrar med information och kunskap som senare kan användas av vårdpersonal för att få en djupare förståelse för personer som lever med HIV. Sjuksköterskan bör ha kunskap om HIV/AIDS för att på bästa sätt kunna ge god omvårdnad, då okunnighet och fördomar i samhället ansågs vara värre än själva sjukdomen.Nyckelord:

Att leva med endometrios

Bakgrund: Endometrios är en kronisk, gynekologisk sjukdom som påverkar många aspekter av livet. Trots att ca 10 procent av kvinnor i produktiv ålder i världen är drabbade är sjukdomen okänd för många. Kunskap om sjukdomen saknas hos många sjuksköterskor vilket leder till att de har svårt att tillgodose kvinnornas behov. Syfte: Att beskriva kvinnors upplevelser av att leva med endometrios. Metod: En beskrivande litteraturöversikt med kvalitativ ansats gjordes. För analysen användes induktiv innehållsanalys. Resultat: Vid analysen identifierades kategorierna; sjukdomen påverkar livets alla områden, kvinnans upplevelser av sjukvården samt oviss framtid. Sjukdomen visade sig påverka kvinnorna inom många olika områden i livet. Sjukvårdspersonal och allmänheten upplevdes ha bristande kunskap om sjukdomen och kvinnorna kände misstro för sjukvården. Osäkerhet gällande framtiden fanns också hos kvinnorna. Slutsats: Endometrios behöver uppmärksammas mer i samhället så allmänheten lär sig känna igen symtomen för sjukdomen, för att öka chansen för den drabbade kvinnan att få vård snabbare. Kunskap om sjukdomen och kvinnans upplevelser av att leva med den måste förbättras hos vårdpersonal för att kvinnan ska få så god vård som möjligt. Begränsad forskning finns kring sjukdomen och ytterligare forskning behövs. 

Stigmatisering - Personers upplevelser av att leva med HIV/AIDS

Bakgrund: HIV är en infektionssjukdom som kan överföras vid bland annat oskyddade samlag, via blod och transplanterad vävnad. Då det idag finns antivirala läkemedel ses HIV inte längre som en dödlig utan en kronisk sjukdom. Personer med HIV/AIDS upplever att sjukdomen påverkar den fysiska och psykiska hälsan negativt. Sjuksköterskor har bristande kunskaper om sjukdomen samt är ovilliga att ge omvårdnad till dessa personer. Syfte: Syftet med litteraturöversikten var att beskriva personers upplevelser av att leva med HIV/AIDS. Metod: Litteraturöversikten baserades på 13 artiklar med kvalitativ design som analyserades enligt Fribergs femstegsmodell. En induktiv ansats användes. Resultat: Huvudtemat stigmatisering identifierades tillsammans med temat transition med tillhörande fem underteman samt temat rädsla med tillhörande tre underteman. Slutsats: Personerna med HIV/AIDS upplevde sig stigmatiserade av närstående, i samhället och i kontakt med hälso- och sjukvården. För att stigmatiseringen ska upphöra behöver sjuksköterskor mer kunskap om HIV/AIDS. För att nå ett personcentrerat förhållningssätt behöver sjuksköterskor se personerna bakom sjukdomen samt medvetandegöra sina attityder och förutfattade meningar mot personerna som lever med HIV/AIDS.