In the literature, the experience of ‘care’ and ‘caregiving’ has been well documented and widely researched. Caregivers are recognized as people (family and friends) who provide unpaid substantial care for family members. Over time, research has increased awareness of caregivers as a distinct social group and has also contributed to caregiving being a widely recognized social issue. However, despite this increased awareness and continued concern for caregivers, much of the literature focuses on adult caregivers. As a result, the experiences of other caregiving populations, such as the youth and young adults, continues to be overlooked and underrepresented. Therefore, there is a need to explore and understand the unique experience of this population and how they give meaning to their experiences. Young caregivers (YCs) are children (5-18) and young adults (18-25) who provide substantial (unpaid) care for a family member who has an illness or disability (Stamatopoulos, 2016). Research on this population is scant and there exists many notable gaps in the literature in terms of diversity, age-based differences, programming and best practices for intervention. More specifically, there is a gap in understanding the experiences of young caregivers who are affected by progressive and incurable chronic brain diseases such as Alzheimer’s Disease or a Related Dementia. As such, this dissertation explores the experiences of YACs affected by ADRD, in terms of their personal experiences with ADRD (knowledge, dementia care and care practices), perceptions of their caregiving role and how they navigate the caregiving role. It builds on scholarship on young caregivers to broaden existing knowledge by using a phenomenological approach, known as Interpretive Phenomenological Analysis, to explore their caregiving experiences and the meaning they give to these experiences in-depth (n=12). It also aims to challenge the dominant assumptions about young caregivers by giving voice to this population by situating the young caregivers as the experts in their own lives. Findings indicate that the caregiving experience for YACs is complex, and situated within a larger socio-political context, which impacts the overall experience of care. Overall, the findings contribute to knowledge on the experiences of care among YACs and highlight the need for more inclusive research and practices on addressing caregiving among this group. / Dissertation / Candidate in Philosophy / This dissertation explores the lived experiences of young adult caregivers (YACs) caring for an older adult with Alzheimer’s Disease or a Related Dementia. Research on this group of caregivers is limited, particularly YACs (ages 18-25) who provide substantial (unpaid) caregiving for an older adult affected by Alzheimer’s or a Related Dementia. Therefore, a key aim of this research is to generate awareness and shed light on the nature of caregiving as experienced by this overlooked population of caregivers. As such, this dissertation aims to understand how young caregivers give meaning to, interpret and make sense of their caregiving experience. To understand the caregiving experience of YACs, I conducted interviews with 12 YACs from Canada and the United States and analyzed their perspectives in detail. The findings shed light on the many factors that shape the caregiving experiences. In addition, the findings show that more research is needed to understand the differences amongst young caregivers to better support their needs. In general, the research can contribute to existing knowledge on young adult caregivers, as well as relevant programs and policies.

The purpose of this study is to understand how street-level bureaucrats, working with clients with mental illness, are implementing their statutory obligation of support for family carers who are caring for or supporting relatives with mental illness. The study are based on vignettes and qualitative interviews with social workers in three different municipalities in southern Sweden.   The questions of this study are: • How do the social workers communicate their statutory obligation of support to family carers? • How do the social workers distinguish the family carers? • How do the social workers distinguish the family carers who are in need of support?   Metod: Vignettes and qualitative interviews has been used as methods to gather empirical data. Theory: Theories of street-level bureaucracy has been used as theory in the analyses of the empirical material. Results: The result of this study concludes that the social workers, in lack of policy introduction, communicate their obligation to support family carers within their discretion. The result shows that the majority of the municipalities do not have formalized support for family carers supporting relatives with mental illness. The study also concludes that the social workers have different understandings of which family carer who is a carer in need of support. How the social workers, within their discretion, distinguish a carer in need affects which family carers who are offered support. The study also concludes that the social workers have different understandings of which family carers are in need of support.

Syfte: Att beskriva närståendes upplevelser av att leva med en person med ALS. Metod: En litteraturöversikt med kvalitativ metod och en induktiv ansats. Resultat: Sjukdomen ALS är ovanlig och de som drabbas av den är i stort behov av omvårdnad. Närstående till en anhörig som har fått diagnosen ALS, upplever att vårdpersonalen har kunskapsbrist angående sjukdomen och vårdandet. De upplever bristande information om sjukdomens förlopp. Egentiden tas ifrån dem, sådant som förr togs förgivet läggs istället åt sidan, då all fokus ligger på den anhöriges omvårdnad. Slutsats: Närstående väljer ofta att vårda den anhöriga i hemmet, trots det snabba sjukdomsförloppet. Vårdandet av den anhöriga leder till känslomässiga påfrestningar hos de närstående, både psykiska och fysiska. / Purpose: To describe next of kin experiences of living with person with ALS. Method: A literature review with qualitative method and an inductive approach. Result: The disease ALS is unusual and those who suffer from it are in great need of nursing. The next of kin those who has been diagnosed with ALS, find that healthcare professionals have a lack of knowledge regarding the disease and care. They experience insufficient information about the course of the disease. The true time is taken away from them, as was previously taking for granted, instead being put aside, as all focus is on the patient's nursing. Conclusion: Next of kin often choose to care for their relatives in spite of the progress of the ilness. The care of the relatives leads to emotional stresses of the related, both mental and physical.

This dissertation is about outreach care service in the Czech republic, its history and present situation including the history of legislation. The next mention is about standards of quality social services which are legal obligation. The significant part is to treatise of emergency situations in care service in close link to care service and its survey of its frequency of approaches of carers workers and their solutions. In conclusion there is an aim to suggest universal set of methods how to deal with these situations.

The diploma thesis is concerned with the long-term foster care; particularly with the experience of foster carer's own children. It provides knowledge of the alternative care system in the Czech Republic and the particularities of foster families. It describes how own children of foster carers experience the period of time before their foster sibling's arrival, what are their feelings and reactions after the arrival, how their positions in the family change, how their relationships are formed and how they perceive their parent's decision retrospectively. The theoretical part is followed by empirical part which is composed of quantitative and qualitative research. The results of quantitative research introduce the experience of biological children and create a basic idea of the situations in foster families. The conclusions of the qualitative research are then an addition of the quantitative part and help to a better imagination of the life in foster families. This thesis should contribute to foster care applicants, their children and specialists who work with foster families. Key words alternative family care, foster care, foster family, biological child, foster children, foster carers training, siblings

The Czech Republic as a signatory of the Convention on the Rights of the Child has vested the practice of state administration in the field of care for minor children to municipalities with extended powers, where the protection of the rights and legitimate interests of minor children is safeguarded by state authorities of social and legal protection of children (ASLPC hereinafter). These authorities are incorporated to the extent laid down by the Act on Social and Legal Protection of Children (Act No 359/1999 Coll., as amended). The position and roles of ASLPC and their competence and jurisdiction are also regulated by the same act. The position of workers of these authorities and its legal embodiment is equally important. Regarding professionality, there are high demands on these workers. In the Czech Republic, significant changes in legislature have been made over the past three years. These amendments have led to the strengthening of the rights of minor children and to the establishing of new tools for their protection. In connection with the adoption of new substantive regulation of family law, which is now exhaustively dealt with by the Act No 89/2012 Coll., the Civil Code, new procedural rules have been established regarding protection of rights of minor children. Such procedural legislation includes (apart from the long-existent Act No. 99/1963, the Code of Civil Procedure) the Act No 292/2013 Coll., on Special Civil Proceedings. The decision-making regarding minor children has been vested mainly by the state into the competence of courts. The courts appoint the locally relevant ASLPC as a guardian who then represents the interests of minor children. The purpose, interwoven with and derived from the first one, was to explore the opinions of selected social workers of ASLPC and of district court judges regarding the defined problems occurring during the work of ASLPCs and courts while protecting the interests of minor children. These particularly include: the use of the tool of precautionary measure; problems of different territorial jurisdiction of courts and ASLPCs; processing of complaints regarding bias in various phases of the proceedings; professional training of workers of ASLPC It is evident from the proposals of both judges and ASLPC workers that it is necessary to unify territorial jurisdiction. The courts are suggesting the priority criterion of the address where the child mainly resides. ASLPC workers suggest the official permanent residence as the prime criterion. Bias causes problems in all phases of proceedings. It is obvious that courts take differing approaches towards the solution of this problem (some courts solve the problem of bias complaints filed by the parties while other courts do not) and for ASLPC workers it is difficult to assess how to act when such complaint is raised against them. The training of ASLPC workers - workers are obliged to educate themselves and their employer is obliged to finance such training. Not all ASLPCs are able to provide training in the required extent - due to financial reasons (the average costs of education of one employee pose from 9,169 to 13,400 CZK annually and they cover approximately 6 days of training). The heavy work-load caused by insufficient numbers of ASLPC employees prevents them from completing such compulsory training. As part of the examination of the "participation of a collision guardian in court proceedings" it has been found out that irregular participation of the worker in the proceedings (absence from participation in appeals proceedings); incomplete reports (directed to courts) from surveys in families. Based on comprehensive examination of the problems of territorial jurisdiction, it was recommended that requests are independently recorded and financial compensation is provided for ASLPCs who are requested to represent minors in front of courts, to draft proposals for precautionary measures.

Gaining independence of clients in the system of the alternative education care is the cardinal topic of the work. Within the framework of the international comparison, the author analyses and makes a survey of the problems accompanying this process. The work does not contain only the conclusions the author came to based on the research in chosen countries (Czech Republic and Poland) but also presents suitable recommendations how the problem of gaining independence of clients of the alternative education care can be solved. The introductory part is applied to theoretical solutions, the international comparisons and examples of a good practice abroad. The author follows opinions of different experts in causalities of the problem from the influence of the biological family through socialization of the clients of the education care to the very problems of the institutional care. He presents these opinions subsequently in the context. In the methodological and research parts the author tries to answer the cardinal question: "What is way the clients of the alternative education care are prepared in order to gain independence?" Within the framework of the qualitative design of the research, the author is mediating the readers the real situation which the clients gaining independence and their carers are...

This diploma thesis deals with the system of the informal long-term care for people with disabilities in the Czech Republic. The first aim of the diploma thesis is to describe this non-conceptually solved issue and confirm the European prevalent tendencies to refamilization and deinstitutionalization in the Czech Republic. Author tries to identify the main problems within the system of informal long-term care through interviews conducted with informal carers and workers from selected social services. The diploma thesis emphasizes the target population of informal carers, who face many obstacles, whether it is the cooperation between the systems of formal and informal care, lack of finances, deterioration of quality of life or insufficient recognition of the status of informal carers from the society and the state. Informal carers are presented on the basis of theoretical perspectives as well as the results of conducted research as the invisible stakeholders of the Czech public policy.

A lot of children grow up in families with a parent suffering from mental or physical illness, a substance abuse or with a diseased parent. Being a next of kin can result in various health risks, struggles in school and in social life. This study aims to examine professionals’ experiences of working with children as next of kin. The study is based on a qualitative, inductive premise with a sample of fourteen people from eight different municipalities in Sweden. The participants were chosen through means of convenience sampling and the analysis was performed using thematic analysis. The results highlight important conditions for municipalities work with children as next of kin: proper framework, organizational prerequisites, and knowledge. The study offering a new perspective on children as next of kin, which is to consider children as carers using Twigg and Atkin’s (1994) model. The study concludes that children as next of kin need to be considered as carers to be properly recognized in their role and in extension offered support. Therefore, there is a need to recognize this group of children both in law and in policies. It requires organizational commitment, intermunicipal cooperation as well as clear routines in different functions of society. Lastly, this study concludes that awareness of and knowledge regarding children as next of kin, and what support they require, need to be more comprehensive in all parts of society. / Många barn växer upp med en förälder med psykisk eller fysisk sjukdom, ett missbruk eller med en förälder som avlider. Anhörigskapet kan föra med sig risker för barnets hälsa, skolgång och sociala liv. Denna studie ämnar undersöka yrkesverksammas upplevelser och erfarenheter av arbete med barn som anhöriga. Studien utgår från en kvalitativ, induktiv ansats där fjorton personer från åtta olika kommuner i Sverige utgör urvalet. Intervjupersonerna valdes utifrån ett målinriktat bekvämlighetsurval och materialet har analyserats utifrån tematisk analys. Resultatet visar på viktiga förutsättningar för kommunernas arbete med barn som anhöriga: tydliga ramar, organisatoriska förutsättningar och kunskapsbildning. Studien bidrar med ett nytt sätt att se på barn som anhöriga, nämligen att betrakta barn som just anhöriga utifrån användandet av Twigg och Atkins (1994) teori om anhörigskap. Studien konkluderar att barn som anhöriga behöver betraktas som just anhöriga för att synliggöras och erbjudas stöd. För detta krävs ett erkännande av gruppen i lagstiftning och i styrdokument. Det krävs organisatoriskt engagemang, gränsöverskridande samverkan samt tydliga rutiner och riktlinjer för hur barn ska uppmärksammas i olika verksamheter. Slutligen fastslås att medvetenhet och kunskap om barn som anhöriga och vilket stöd de kan få behöver bli mer omfattande på alla nivåer i samhället.

Public demands have forced countries to explore new ways of rendering primary health care to reach the poor who are not within reach of the modern health care systems. New categories of health care personnel, like lay health workers emerged. There are vast differences in the roles of these lay health workers as was revealed with an extensive literature search. The phenomenology qualitative research method was used to investigate perceptions of farm lay health workers regarding their roles in rural areas. A convenience, non-random sample (N=5) was used for focus group discussions and in-depth interviews to collect data. The latter revealed five main themes associated with the role of farm lay health workers: (1) community link; (2) carer; (3) community developer; (4) counsellor and (5) role model. Guidelines were formulated to enhance the role of lay health workers in the rural Western Cape Province and to improve the quality of care to rural communities / Health Studies / M.A. (Health Studies)