This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation. A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV). The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional’s approach. The result also identified a low level of agreement between the participants’ experience and what they considered to be significant in the professional’s approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV). Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area.

This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation. A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV). The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional’s approach. The result also identified a low level of agreement between the participants’ experience and what they considered to be significant in the professional’s approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV). Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area.

Abstract The aim of this study was to compare the development of the psychiatric health care services, the views about what things can be regarded as good results in psychiatric health care and the factors affecting on them in Finland and in Greece. The study can be used as a point of reference when developing and comparing mental health indicators in and between the European countries. The psychiatric health care services in both the countries appeared to have gone through similar phases of development: isolation, psychopharmacal treatment, work and other activities, psychotherapies and finally, patient-oriented combination of all the methods. The number of psychiatric in-patient beds has decreased in mental hospitals and increased in general hospitals, and the number of rehabilitation and service homes has also increased. The data sets were collected by interviews and from written documents and statistical data sets concerning Finland and Greece (OECD health care data set 2000, European Commission 1997, 1999a, 1999b, 2000, 2001, World Health Organization 1996a, 1996b, 2001a, 2001b). In Finland 44 workers and decision-makers were interviewed within the area of one hospital district, and in Greece, 35 workers were interviewed in two psychiatric hospitals. The qualitative data sets were analyzed with methods of content analysis. The international and national quantitative data were analyzed for similarities and differences. The frame for the comparison was outlined based on the literature and the results of the interviews. In both countries, good results in psychiatric health care included well-being, functional abilities, service capacity and economy. Well-being in both the countries meant alleviation of the symptoms of the illness and satisfaction of the basic physical, psychic and social needs. In Finland patients' positive feelings were emphasized, while in Greece, the value of of equal rights for sick and healthy people was underlined. Functional abilities included the ability to take care of one's everyday life. In Greece the long-term mental patients needed to relearn the skills of daily living, while the Finnish system emphasized patients' ability to use the skills they had but did not use because of their illness. Adequate service capacity in Greece meant the accessibility of the services close to each person's place of residence, while in Finland possibilities to get information and guidance about matters concerning oneself and one's relatives were considered especially important. Economy meant the relationship between the costs and the results. In Greece patients needed sufficient pensions to be able to live outside the hospital. In Finland the challenge was to produce sufficiently high-quality services with the available resources. The factors affecting good results were related to the patient/client and his/her relatives, the health care staff, the methods of treatment, the organization of the system of care and the society in question. The importance of the patient's family, the professional skills of the staff, and the availability of both outpatient and inpatient treatment and medication were emphasized. / Tiivistelmä Tutkimuksessa vertaillaan psykiatrisen terveydenhoidon kehitystä sekä käsityksiä hoidon tuloksellisuudesta ja siihen vaikuttavista tekijöistä Suomessa ja Kreikassa. Tutkimusta voidaan käyttää yhtenä esimerkkinä kehitettäessä psykiatrisen hoidon indikaattoreita ja maiden välisiä vertailuja Euroopassa. Tulosten perusteella psykiatrisessa terveydenhoidossa on havaittavissa molemmissa maissa tietyt kehitysvaiheet: eristäminen, lääkitys, työ ja toiminta, psykoterapiat, ja viimeisimpänä edellä mainittujen potilaslähtöinen yhdistäminen. Sairaalapaikkojen määrä psykiatrisissa sairaaloissa on vähentynyt ja yleissairaaloissa lisääntynyt molemmissa maissa ja kuntoutus- ja hoitokotien määrä on lisääntynyt. Aineisto koottiin haastatteluilla, kirjoitetuista asiakirjoista sekä tilastotiedoista psykiatrisesta terveydenhoidosta Suomessa ja Kreikassa (OECD health care data set 2000, European Commission 1997, 1999a, 1999b, 2000, 2001, World Health Organization 1996a, 1996b, 2001a, 2001b). Suomessa haastateltiin 44 työntekijää ja päättäjää yhden sairaanhoitopiirin alueella, Kreikassa 35 kahdessa sairaalassa. Laadullinen aineisto analysoitiin sisällönanalyysimenetelmällä. Kvantitatiivisesta, kansallisista ja kansainvälisistä lähteistä kootusta aineistosta etsittiin samankaltaisuuksia ja eroavuuksia. Vertailun viitekehys muodostettiin kirjallisuuden ja haastattelujen tulosten perusteella. Psykiatrisen terveydenhoidon tuloksellisuus on molempien maiden tiedonantajien mukaan hyvää oloa, toimintakykyä, palvelukykyä ja taloudellisuutta. Hyvä olo tarkoittaa sairauden oireiden lieventymistä ja psyykkisten, fyysisten ja sosiaalisten perustarpeiden tyydyttymistä. Suomessa korostettiin potilaan myönteisiä tunteita, kreikassa ihmisarvoa samanlaisin oikeuksin kuin muillakin ihmisillä. Toimintakyky sisältää kyvyn huolehtia jokapäiväisen elämän vaatimista tehtävistä. Kreikassa pitkään sairastaneilla oli tarve opetella uudelleen alusta jokapäiväisen elämisen taitoja, Suomessa korostettiin sairauden vuoksi käyttämättömänä olevan osaamisen elvyttämistä. Palvelukyky tarkoitti Kreikassa palvelujen saatavuutta läheltä asuinpaikkaa, Suomessa tiedon ja ohjauksen saamista itseä ja läheisiä koskevissa asioissa. Taloudellisuus tarkoittaa kustannusten ja tulosten välistä suhdetta. Kreikassa potilaiden tulee saada parempia eläkkeitä kyetäkseen asumaan sairaalan ulkopuolella, Suomessa haasteeksi koettiin hyvän hoidon mahdollistaminen olevilla voimavaroilla. Tuloksellisuuteen vaikuttavat tekijät liittyivät potilaaseen/asiakkaaseen ja hänen läheisiinsä, hoitavaan henkilökuntaan ja hoitomenetelmiin, hoidon organisointiin sekä yhteiskuntaan, jossa eletään. Molemmissa maissa korostettiin potilaan läheisten merkitystä, henkilökunnan ammattitaitoa, hoitopaikkoina sekä avo- että sairaanhoitoa ja lääkehoitoa.

Background Close, continuous and efficient collaboration between different professions and sectors of care is necessary to provide patient-centered care for individuals with mental disorders. The lack of structured collaboration between in- and outpatient care constitutes a limitation of the German health care system. Since 2012, a new law in Germany (§64b Social code book (SGB) V) has enabled the establishment of cross-sectoral and patient-centered treatment models in psychiatry. Such model projects follow a capitation budget, i.e. a total per patient budget of inpatient and outpatient care in psychiatric clinics. Providers are able to choose the treatment form and adapt the treatment to the needs of the patients. The present study (EVA64) will investigate the effectiveness, costs and efficiency of almost all model projects established in Germany between 2013 and 2016. Methods/design A health insurance data-based controlled cohort study is used. Data from up to 89 statutory health insurance (SHI) funds, i.e. 79% of all SHI funds in Germany (May 2017), on inpatient and outpatient care, pharmaceutical and non-pharmaceutical treatments and sick leave for a period of 7 years will be analyzed. All patients insured by any of the participating SHI funds and treated in one of the model hospitals for any of 16 pre-defined mental disorders will be compared with patients in routine care. Sick leave (primary outcome), utilization of inpatient care (primary outcome), utilization of outpatient care, continuity of contacts in (psychiatric) care, physician and hospital hopping, re-admission rate, comorbidity, mortality, disease progression, and guideline adherence will be analyzed. Cost and effectivity of model and routine care will be estimated using cost-effectiveness analyses. Up to 10 control hospitals for each of the 18 model hospitals will be selected according to a pre-defined algorithm. Discussion The evaluation of complex interventions is an important main task of health services research and constitutes the basis of evidence-guided advancement in health care. The study will yield important new evidence to guide the future provision of routine care for mentally ill patients in Germany and possibly beyond. Trial registration This study was registered in the database “Health Services Research Germany” (trial number: VVfD_EVA64_15_003713).

Syftet med denna C-uppsats var att belysa hur anhöriga upplever sin roll i kontakten med psykiatrin till en närstående med diagnosen schizofreni eller schizoaffektivt syndrom. Det undersöks vilka erfarenheter anhöriga har angående att delta i processen kring vårdinsatser för en närstående. Vi hoppas att studien kan bidra till ytterligare sociologisk kunskap inom ämnesområdet för att lyfta anhörigas situation och känsla av utanförskap i relation till vården. Uppsatsen bygger på en kvalitativ intervjustudie där åtta personer har intervjuats över telefon och över Zoom. Genom fem artiklar och en historisk tillbakablick över hur psykiatrin i Sverige har utvecklats så får läsaren en djupare förståelse för hur anhörigas roll relaterat till psykiatrin har utvecklats och ser ut idag. Resultatet redovisas genom att presentera tre teman: Anhörigas kontakt med vårdpersonal, Nutid och Framtid samt Förbättringar gällande anhörigas delaktighet. Vid varje tema sammanfattas intervjusvaren där skillnader och likheter framställs och jämförs med varandra. Det teoretiska ramverket grundar sig på Melvin Seemans alienationsteori samt Birgitta Andersheds teori om delaktighet och används i analysen för att besvara frågeställningarna. Resultatet av den sociologiska analysen visar att anhörigas delaktighet i den närståendes vård förebygger anhörigas upplevelser av maktlöshet, meningslöshet och social isolering i sin vardag och i sin relation till vården. Delaktigheten bidrar även till att anhöriga mår bättre psykiskt och att närstående kan få vård i ett tidigare skede. / The purpose of this bachelor’s thesis was to shed light on how relatives experience their role in contact with psychiatry to a relative with a diagnosis of schizophrenia or schizoaffective syndrome. It also examines what experiences relatives have regarding being included in the process around care interventions. We hope that with this study we can contribute to further sociological knowledge in this subject area to raise the situation of relatives. The thesis is based on a qualitative interview study where eight people were interviewed over the phone and over Zoom. Through a number of articles and a historical review of how psychiatric healthcare in Sweden has developed, the reader gets a deeper understanding of how the role of relatives related to psychiatry has developed and how it looks today. The result is presented by three themes: Relatives' contact with care staff, Present and Future and Improvements regarding relatives' participation. For each theme, the interview results are summarized where differences and similarities are presented and compared with each other. The theoretical framework is based on Melvin Seeman's theory of alienation and Birgitta Andershed’s theory on participation and is used in the analysis to answer the questions. The results of the sociological analysis show that the relatives’ participation in the care of the close relative prevents the relatives' experiences of powerlessness, meaninglessness and social isolation in their everyday life and in their relationship to the care. Participation also contributes to relatives feeling better mentally and that relatives can receive care at an earlier stage.