Legal aspects of care for dependent persons More than half a million people in the Czech Republic is directly affected by the issue of care for dependent persons. It concerns not only those who are relying on care due to a physical or mental disability, but also those who provide the necessary care. Regarding the providers, so-called informal carers constitute majority of them. They are often family members who provide care without any official formalization, contract, or registration. However, as a group, informal carers are repeatedly overlooked. While emphasising the rights, duties and needs of both dependent persons and carers, this paper aims to comprehensively evaluate the current legal framework regulating the care for dependent persons. Firstly, the system of care in the Czech Republic is generally described followed by the presentation of specific forms of care highlighting the position of informal carers. Secondly, the paper brings up an analysis of basic activities of daily living that are crucial for the assessment of dependence. Subsequently, the administrative procedure in which the assessment is undergone is closely depicted. Nevertheless, the main focus of the paper lies in the analysis of the rights and obligations of the persons dependent on care and the informal carers. Hence,...

Studiens syfte är att undersöka hur barn som har en omsorgsgivande och ansvarstagande roll i förhållande till sina föräldrar skildras i svenska, statliga texter om barns utsatthet. Utgångspunkten är fenomenet och begreppet young carers/unga omsorgsgivare som har fått stor uppmärksamhet i bland annat England och Australien, men knappt belysts alls i Sverige. Med ett diskursanalytiskt angreppssätt genomförs en näranalys av fyra publikationer utgivna mellan år 1999 och 2013 av Socialstyrelsen. Teorin och metoden som används är en kombination av Faircloughs kritiska diskursanalys och diskursteori. Andra teoretiska utgångspunkter är socialkonstruktionism och teori om hur sociala problem konstrueras. Socialstyrelsen har som myndighet stor makt att påverka bilden av sociala problem bland professionella inom bland annat socialtjänst och sjukvård. Den diskursanalytiska genomgången av Socialstyrelsens publikationer fann två diskurser om barns omsorgsgivande och ansvarstagande; en aktörsdiskurs och en objektsdiskurs. Ordet omsorgsgivande återfinns knappt i materialet, men däremot är avsnitt om barns ansvarstagande mer vanligt förekommande. Även familjens och professionellas roll i förhållande till dessa barn och det de gör analyseras. I texterna framträder kärnfamiljen som utgångspunkt vilket problematiseras. Socialsekreterares självuttryckta brist på kompetens gällande barnsamtal diskuteras, samt vad det kan få för effekt för barnen i fråga och på konstruktionen av sociala problem. Unga omsorgsgivare dryftas i förhållande till den svenska välfärdsstaten, då man kan anta att det utbredda sociala skyddsnätet leder till att barn som omsorgsgivare är ett ovanligt fenomen i Sverige. Å andra sidan skulle socialpolitiken kunna osynliggöra unga omsorgsgivare då det blir förgivettaget att barn och föräldrar får det stöd de behöver. Uppsatsens bidrag är att diskutera ett ämne som relativt sällan åskådliggörs i Sverige, men som möjligtvis kommer att bli alltmer uppmärksammat då medvetenheten om barns rätt till delaktighet och aktörskap som omsorgsgivare ökar. / The object of this study is to investigate how Swedish official texts describe children who care for and take responsibility for their parents. The starting point is the term and phenomena young carers which has received a lot of attention in for instance England and Australia, but is yet relatively unknown in Sweden. Through discourse analysis four publications by the National Board of Health and Welfare (Socialstyrelsen) are scrutinized. The theory and method used is a combination of Fairclough’s critical discourse analysis and discourse theory. Other theoretical points of departure are social constructionism and theory on construction of social problems. Socialstyrelsen has considerable power when it comes to exerting influence on professionals within the institutions of social care and medical services concerning how problems are to be understood and dealt with. The discourse analytical reading of Socialstyrelsen’s publications found two discourses when it comes to young carers: a discourse of agency and a discourse of objectification. The word caring (omsorgsgivande) is hardly to be found in the material, but paragraphs dealing with a taking of responsibility among children occur more frequently. Also the role of the family as well as the role of professionals in relationship to these children and what they do are analyzed. The texts show the conjugal family as a starting point and this fact is problematized. The social worker’s selfexpressed lack of competence in reference to talking to children is discussed, and also what kind of effect this might have on the children in question and in the construction of a social problem. Young carers are mentioned in relation to the Swedish welfare state, since one can assume that the prevailing social safety nets makes young carers an unusual phenomenon in Sweden. Social politics could, on the other hand, make young carers invisible as it becomes a given that children and parents receive all the support they need.  The contribution of the study at hand is to discuss a subject that does not get much visibility in Sweden, but that may attract more attention with greater awareness of children’s right to participate and agency as contributors.

This study aims to explore Scottish and Korean carers‘ attitudes towards the diagnosis of dementia in their relative, family care, community care and to residential care in Scotland and Korea respectively, also under examination was the origin of different carers‘ attitudes between Scotland and Korea. The dominant argument between previous Western and Eastern comparative studies on attitudes, has been that culture made the difference. In other words, the cultural factor was recognised as a main determinant of attitudes towards a diagnosis of dementia, towards social services at home and residential care in Asian societies, including Korea. This thesis starts with the question: Does culture really explain the phenomenon of Asian people‘s attitudes towards dementia? Indeed the tradition of filial piety has been changing and now seems to be rather weak in modern Asian society. In particular, contemporary Korea is modernised and westernised, as a result, many older people live apart from their adult children and their nuclear families. This study asserts that Confucianism is a much less significant factor than differences in social policy. In other words, this thesis focuses not on Confucianism, but on the impact of institutions on carers‘ attitudes towards dementia. Finally, this thesis explores this argument through the following research question: What are the origins of different carers‘ attitudes between Scotland and Korea? In order to develop this argument, this thesis has carried out interviews with 14 Scottish carers and 28 Korean carers; and adopted a qualitative approach that would yield a rich exploration and deeper understanding of the different attitudes between carers in Scotland and Korea. Based on this data, this thesis examines carers‘ attitudes towards the diagnosis of dementia (chapter 3), family care (chapter 4), community care (chapter 5), and residential care (chapter 6). Each chapter analyses similarities and differences in attitudes in Scotland and Korea from the point of view of culture or the social welfare system. To conclude, these findings explain that the origin of carers‘ attitudes in this study is based on social policy rather than culture. In other words, the Korean carers‘ attitudes and behaviours towards diagnosis and long-term care services are rooted in the residual welfare system rather than Confucianism. Likewise, this study found that Confucianism has a less significant influence than social policy on carers‘ attitudes towards the utilisation of health care, community care and residential care. Unlike previous studies on East Asia, that argue for a cultural explanation, this study of Korean carers demonstrates that the residual welfare system is more persuasive than the cultural approach derived from Confucianism . This study contributes to the comparative study of Scotland and Korea as well as being a qualitative study in Korea. In addition, it will provide a new perspective on attitudes towards studies on East Asia. Moreover, the study will suggest political implications through the exploration of the carers‘ attitudes towards dementia diagnosis, social services at home and residential care. It also can provide lessons on dementia and dementia care from different experiences in Scotland and Korea.

Sammanfattning   Bakgrund: Palliativ vård har utvecklats för att lindra lidande och främja livskvalitet i livets slutskede. Den palliativa vården delas in i främst två faser; tidig och sen fas. Symtomlindring är en av hörnstenarna i palliativ vård och ofta utförs palliativ vård i hemmen av närstående. Detta kan innebära en påfrestning för de närstående då familjestrukturer kan komma att förändras. Syfte: Att beskriva upplevelsen av att vara närståendevårdare till en person som vårdas palliativt i hemmet. Metod: En kvalitativ litteraturöversikt där teorin om KASAM har använts. Elva artiklar har analyserats utifrån Fribergs femstegsmodell. Resultat: Närståendevårdarna upplevde att de inte fick tillräckligt med information eller kunskap från sjukvården samt att kommunikationen med denna var bristfällig. De upplevde att detta påverkade deras känsla av kontroll i situationen och att deras delaktighet i omvårdnaden av den sjuke individen inte togs på allvar. De saknade ofta stöd från sjukvården men tog sig ändå an uppgiften som vårdare och uttryckte tacksamhet över att ha kunnat finnas där för sin sjuke familjemedlem. Slutsatser: Närståendevårdarna behöver ett bättre stöd från sjukvårdens sida i form av information, fysiskt och psykiskt stöd och bättre kunskap. Sjuksköterskan kommer att spela en stor roll i mötet med dessa personer och det är viktigt att inse vilken stor roll närståendevårdarna spelar i vårdandet av den sjuke individen. / Summary Being a family carer at the end of life – a review focused on palliative home care Background: Palliative care was developed to ease suffering and improve quality of life at the end of life. The palliative care is divided into two phases; early palliative care and end-of-life care. The easing of symptoms is one of the palliative cornerstones and the palliative care is often conducted at home by family carers. This can become a burden for the family carers when family structures are changing. Aim: To describe the experience of being a family carer to a person within palliative home care. Method: A qualitative literature review was conducted, where the theory of KASAM was used. Eleven articles were reviewed and analysed using Friberg’s five step model. Results: The family carers felt like they didn’t receive enough information or knowledge from the health care and felt like the communication between them was lacking. The control they experienced in the situation was negatively affected by this and they felt like their involvement in the care of the sick individual was not taken seriously. They were often missing support from the health care but they still adapted the task of being the family carer and expressed gratitude of being able to take care of their sick family member. Conclusion: Family carers need better support from the health care in the shape of information, physical and psychological support and better knowledge. The role of the nurse is going to be important in meeting these individuals and it’s important to realise the potential these family carers have in nursing the sick person.

Recovery is a new concept positing that people with schizophrenia can lead fulfilling, satisfying, and productive lives. Family carers often play a helpful but largely unacknowledged role in the support of service users with schizophrenia, and the nature of their contribution to and their role in recovery has hitherto not been investigated. This original PhD explores whether learning about the recovery approach through participation in a training intervention changes the way carers view recovery, whether they find the concept helpful, whether it modifies their behaviour, and their evaluation of the intervention. A participatory action research methodology was applied in this study, actively supported by a steering group consisting of different stakeholders. Training on the recovery approach was delivered to a group of eleven carers to explore their response to the recovery concept. The training programme was delivered by me and a carer, utilising my personal experience as a service user with the diagnosis of schizophrenia. Focus groups and individual, semi-structured follow-up interviews were applied to assess self-reported changes in attitudes and behaviours. Mainly qualitative data were collected with supplementary socio-demographic data. The analysis of the qualitative data suggests that being more ‘recovery-aware’ gives carers increased hope and optimism for their own and the service user’s future. Greater awareness of the impact of caring upon the service user’s life helps them to begin to care in such a way as to promote recovery in the service user, and gain more confidence in their own expertise-by-caring. Professionals have a key role to play in recovery, a three-cornered partnership between the carer, professionals and the service user is desirable. The carers evaluated the training programme as helpful, and particularly valued its authenticity as it was led by a service user and carer trainers. Conclusions suggest that recovery is a helpful concept for carers. It shows that learning about recovery helps them to care more effectively for the service user and for themselves. It suggests the usefulness of developing a recovery concept for carers based on reconciliation of their caring identity, their caring role and their relationships with the service user and professionals. Recovery for the service user and for the carer requires support from professionals, based on a partnership service model, a contribution to the development of recovery practice. The training programme is a useful way of conveying the hope in recovery and is strengthened by the service user perspective of recovery.

Background: A growing number of older people, mainly women, live in single households. They represent avulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end oflife. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research Little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay athome even at the end of life. This paper aims to introduce the research protocol. Methods: We plan to apply a qualitative longitudinal study to better understand how older people living aloneand their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We willconduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 completedata sets and up to 200 personal interviews were planned. These will be complemented by regular telephonecontacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructingcase trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshopsshall assure quality and support knowledge transfer. Discussion: This study protocol aims to guide research in a field that is difficult to approach, with regard to itstopic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative Research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will beenhanced, which is of major relevance for future care planning. With investment in additional reflexivity andcommunication procedures innovative results and robust knowledge are expected outcomes.

Eftersom andelen äldre som är i behov av vård- och omsorg ökar i samhället kommer även anhörigvårdare att öka och i många fall kan det innebära en tung börda, isolering och ensamhet. ACTION-tjänsten är en form av IKT-baserat anhörigstöd som kan vara ett komplement till andra former av stöd till anhöriga. Med IKT menas Informations och Kommunikations Teknologi. Tidigare forskning om vård- och omsorgspersonalens upplevelser och erfarenheter av att arbeta med ACTION-tjänsten är knapphändig. Syftet med studien var att beskriva vård- och omsorgspersonalens erfarenheter av att stödja äldre och anhöriga som vårdar sina äldre närstående i hemmet, via ACTION-tjänsten. Tio kvalitativa intervjuer genomfördes med vård- och omsorgspersonal som arbetar med ACTION-tjänsten. Intervjuerna analyserades utifrån kvalitativ innehållsanalys. Studien visar att ACTION-personalen upplever det positivt att stödja anhörigvårdare och deras närstående via ACTION-tjänsten. ACTION-personalen tycker att ACTION-programmen är ett bra hjälpmedel för att ge de anhöriga kunskaper och självförtroende och på så vis kunna stärkas i sin roll som anhörigvårdare. Genom kontakt via bildtelefoni skapas en djupare relation mellan personal och anhörigvårdare eftersom att de har möjlighet att pratas vid oftare och de ser varandra vid samtalet. Genom detta upplever personalen att de på ett bra sätt kan ge den individuella vård och stöd som anhörigvårdarna är i behov av. Personalen upplever det också positivt att kunna hjälpa anhörigvårdare att bryta sin isolering genom att skapa sociala kontaktnät mellan ACTION-användarna. I studien framkommer det också att flera av personalen saknar stöd och handledning från kommunledningen. I diskussionen diskuteras resultatens huvudfynd med stöd av tidigare forskning. / Program: Specialistsjuksköterskeutbildning med inriktning mot distriktssköterska

The purpose of this study was to enter the world of the parents living with a child with autism, wondering what quality of life means for them and whether their engagement with social work services makes any difference to their quality of lives. Understanding the quality of life experiences of the parents of children with autism is relevant for policy making and social work practice. Based in a Scottish context, the objectives for this research were as follows: To explore the parent carers' description of the term quality of life To describe the parent carers' views on their quality of life in the context of the services provided by social services within (departments of) local authorities. To understand the systems, processes and procedures put in place by the local authorities to support parent carers To explore the scope for changes, if any, in the present social work approach in order to enhance the quality of life of parent carers. The study adopted a grounded theory methodology informed by a symbolic interactionist theoretical framework. Data were gathered from three study local authorities in Scotland. The participants include an almost equal number of male and female parents (total parent participants = 23); and social workers and operational managers from three study local authorities (total number of social workers =12, total number of operational managers =3). This study utilised focus groups and semi structured interviews to gather data. Using the constant comparison method, three main categories emerged; namely 'new normal', 'on-going burden' and 'limited help' which contextualised the quality of life experiences of parent participants in the study. Oppression emerged as the overarching theory. Drawing on the parental perspectives on quality of life distilled in this study, the implications for further research, professional practice and education are explored.

Syftet med undersökningen var att ta reda på hur anhöriga resonerar kring att deras (o)hälsa har förbättras eller inte vid medverkan i en kommuns anhöriggrupper. I bakgrunden presenteras bland annat tidigare forskning som visat att anhörigvårdare har en sämre upplevd hälsa än de som inte vårdar och att behovet av att ventilera sina känslor är stort. Vidare presenteras att vi lär oss genom kommunikation och samspel med andra människor. Det har gjorts tre kvalitativa intervjuer med anhörigvårdare som medverkat i en kommuns anhöriggrupper. Två intervjuer har gjorts på en kommuns anhörigcenter och en intervju har gjorts i en av informantens hem. Två av informanternas anhöriga har gått bort och en av informanternas anhöriga lever än. Resultatet visar att ett anhörigcenter är en viktig del i anhörigvårdarnas liv för att de ska må bra. De medverkandes psykiska hälsa har förbättrats och de har insett vikten av att ta hand om sig själva och inte bara den sjuka. Anhörigvårdarna värdesätter gemenskapen och personerna i grupperna högt och anser att det är tack vare dem som de orkar med vardagen.

Bakgrund: Då en person drabbas av stroke blir han/hon beroende av hjälp och då känner anhöriga att de ofrivilligt får ansvaret att vårda sin familjemedlem. För de anhöriga är det oftast en ny okänd värld som öppnar sig och deras informationsbehov är stort. Syfte: Syftet med litteraturstudien var att beskriva det behov av information och stöd som anhöriga till de som drabbats av stroke har. Metod: En litteraturstudie där 17 vetenskapliga artiklar granskades och en innehållsanalys gjordes enl. Forsberg och Wengström. Resultat: Studiens resultat presenteras med tre huvudkategorier: Upplevelsen av att vara anhörigvårdare; Anhörigas behov av information och stöd; Faktorer hos anhöriga som påverkar flödet av information. De flesta anhöriga ansåg att de inte fick tillräcklig och adekvat information under tiden deras familjemedlem vårdades på sjukhus. Detta kunde medföra osäkerhet och rädsla hos många anhöriga. Slutsats: Det är av stor betydelse att vårdpersonalen ger de strokedrabbades anhöriga individuellt anpassad information och stöd eftersom de förväntas bli deras informella vårdare efter utskrivning. / Background: When a person suffers a stroke, he/she become dependent on help and the relatives feel that they are involuntarily given responsibility to care for their family member. It is usually a new unknown world that is opening up for the relatives and their need for information is great. Purpose: The purpose of the literature study was to describe the need for information and support that the relatives of those affected by stroke have. Method: A literature review in which 17 scientific articles were reviewed and a content analysis was done according to Forsberg and Wengström. Results: The findings in this study are presented with three main categories: The experience of being carers; Relatives' need for information and support; Factors that affect the flow of information. Most families believe that they had not received adequate and appropriate information during the time their family member was admitted to hospital. This could result in uncertainty and fear within many relatives. Conclusion: It is very important that health professionals give the relatives of stroke victims individualized information and support because they're expected to become their informal carers after discharge.