The aim of this study was to explore the experience of carers of family members dying at home with particular reference to their expectations and preparedness for the dying process. It was a qualitative, longitudinal study which initially followed a grounded theory approach. However, as a theatrical metaphor became apparent from the data the approach changed to dramaturgical analysis. Face to face semi-structured interviews were conducted with fifteen carers before and after the death of their family member. Carers were found to be performing a leading role in home palliative care but they experienced a universal sense of uncertainty and of being unrehearsed for their role in the dying process. They were reluctant to seek information to give them a script for their performance because it was painful and difficult to contemplate their family member dying. They needed the direction of health professionals and the support of paid carers but had variable experiences of these services. Carers’ performance types were also variable but tended to be towards the combative or the pragmatic end of a continuum. Their experience was illuminated through the dramaturgical metaphor of a play called the Carer’s Initiation. The climax of the play was the death of the family member followed by the finale in which they watch over the body until it is removed and they finally face a future without their family member. The carer’s initiation highlighted policy and practice implications for improving the preparation and support of carers for the dying process.

Support provided by non-professional family members is generally believed to be beneficial to the recovery of critically ill patients. Nursing researchers have conducted a number of studies about the experiences of critically ill patients and the needs of their families. However, few have investigated the experiences and interactions of both this group of patients and their main informal carers (principal lay support persons) simultaneously. This study has sought to rectify this situation by capturing and undertaking a theoretical analysis of the perceptions and experiences of both critically ill patients and their principal lay support persons. As a result a substantive theory has been developed through the use of grounded theory method in the Study. This theory identifies and explains the actions and interactions between critically ill patients and their principal lay support persons who participated in the Study, whom the researcher observed and interviewed during the data collection period. Data were collected during the critically ill participant¡¦s hospitalisation and three months following his/her discharge from hospital. Implications of the study concern nursing practice as well as outcomes of the Study as these are described and explained through the substantive theory developed from it. Testing of this theory in the context of critically ill patients and their lay support persons provides opportunities for further research, as does the overall phenomenon of lay person support for critically ill patients. Grounded theory was the method used in the Study. Data for the Study were collected by participant observation of, and face-to-face interviews with patients who had a critical illness and their principal lay support persons. Two interviews were conducted with each of these participants. Patients and their principal lay support persons were initially interviewed separately to obtain information about their individual perspectives of what support meant to them during an episode of critical illness. A second interview was conducted three months later to facilitate the researcher¡¦s understanding of both patients¡¦ and principal lay support persons¡¦ experiences during the recovery process. A total of sixteen (16) interviews were conducted in this study from eleven (11) participants before data saturation occurred. The data collected were analysed by constant comparative analysis integral to the grounded theory approach. Data analysis was also facilitated by a computer-aided qualitative data analysis software NUD*IST 4 (Non-numerical Unstructured Data Indexing, Searching, and Theorizing Version 4). This software aided the analysis to the extent that it provided an efficient data management system. Three categories, 1) being-there-with, 2) independing, and 3) coping were discovered from the data. Being-there-with is an essential and mutual need between the patients and their principal lay support persons during the episode of critical illness and later recovery. Independing on the other hand is the process through which these patients experiment with regaining their independence. It involves their experiences of making decisions and re-building confidence. Coping is the process whereby the principal lay support persons and patients manage their stress during the critical illness and later recovery. During the coping process, there is an uncertainty in principal lay support persons about their loved ones¡¦ situation. They experience ¡¥coping with each day as it comes¡¦ and ¡¥learn to adjust¡¦ to the stress arising from the changing and unpredictable condition of the patients. Being-there-with is also a major coping strategy for both the principal lay support persons and patients to manage their stress. The three categories of being-there-with, independing, and coping arising from this Study provided the basis from which to identify its core category, ¡¥mutually being-there-with each other¡¦, and to theorize the core process that represents the substantive theory about experiences and interactions of principal lay support persons and their loved ones during a critical illness situation. The core process that represents the developed substantive theory is ¡¥surviving a critical illness through mutually being-there-with each other¡¦. This theory explains the complex, dynamic, and interactive nature of principal lay person support which both patients and principal lay support persons experienced during an episode of critical illness and later recovery. An understanding of this dynamic, complex and interdependent relationship between patients and lay support persons will better enable nurses to consider both these parties as the focus of their care. Furthermore, because the substantive theory emerging from this Study captures the process of patients¡¦ and lay support persons¡¦ recovery from an episode of critical illness it provides a conceptual map of how this process may progress. In this Study the theory enables nurses to gauge both patients¡¦ and lay support persons¡¦ progress along the road to recovery and to consider this in their plan of care. Several implications for nursing practice emerged from this study. These relate to the needs of critically ill patients and their principal lay support persons during the process of being critically ill and recovering which they experienced together. Because this Study identified the importance to both patients and principal lay support persons being-there-with each other, a key implication of the study is the need for intensive care units to adopt flexible visiting hours to maximise opportunities for this to occur. Nevertheless, at the same time nurses need to be vigilant that flexible visiting does not prove onerous and overtire patients or their principal lay support persons. A further implication of the Study for nursing practice closely related to its finding of the importance of the core category ¡¥mutually being-there-with each other¡¦ to patients and their lay support persons in the context of critical illness and recovery, is the need for nurses (and other health professionals) to be willing to care for both parties as an inseparable dyadic unit. This Study also has implications relating to the care of critically ill patients following their discharge home. The experience of participants in this Study revealed the importance of careful discharge planning, post-ICU follow-up, and continuity of care in the community to enhance recovery of the patients and to address the special needs of their principal lay support persons. From a researcher¡¦s perspective the process of recruitment for this study demonstrated that recruitment of vulnerable populations (like ICU patients) is a challenge to the researcher in terms of ethical considerations, particularly when the researcher is attempting to meet the expectation of primary selection for theoretical sampling in grounded theory method. Suggestions are made in this thesis about how to tackle this challenge in future studies. At the conclusion of the Study, a number of suggestions for further research are made relating to the findings. These include the recommendation that the substantive theory developed in this Study be tested with a larger population. It is also suggested that a longitudinal follow-up study, which extends beyond a three months recovery period, be conducted to further understand the experiences and support needs of post-ICU patients and their principal lay support persons. In addition, more research is required to identify best practice regarding discharge planning, post-ICU follow-up care, and continuity of care in the community for critically ill patients and their principal lay carers. / PhD Doctorate

Background: One-in-three carers of stroke survivors experience depression with no psychological treatments tailored to meet their needs, such as barriers to attending traditional face-to-face psychological services. A cognitive behavioural therapy (CBT) self-help approach may represent an effective, acceptable solution. Methods: Informed by the MRC framework (2008) for complex interventions, six studies informed development, feasibility and piloting of a CBT self-help intervention for depressed carers of stroke survivors: Study One: Systematic review and meta-analysis of psychological interventions targeting depression and anxiety in carers of people with chronic health conditions; Study Two: Interviews to understand difficulties experienced by depressed and anxious carers; Study Three: Interviews to understand positive coping strategies used by non-depressed and non-anxious carers; Study Four: Drawing on results of Studies One to Three, iterative modelling to develop the CBT self-help intervention; Study Five: Feasibility randomised controlled trial to examine methodological and procedural uncertainties for a Phase III definitive trial; Study Six: Updated systematic review and meta-analysis. Results: Study One: 16 studies identified for inclusion yielding small and medium effect sizes for depression and anxiety respectively, with trends for individually delivered treatments over shorter session durations to be more effective for depression. Six additional studies were included in Study Six, replicating Study One results; Study Two: Depressed and anxious carers experience difficulties adapting to the caring role, managing uncertainty, lack of support and social isolation; Study Three: Non-depressed and non-anxious carers utilise problem-focused coping strategies to gain balance and adapt to caring role, use assertiveness, seek social support and positive reinterpretation; Study Four: Developed a theory-driven CBT self-help intervention; Study Five: Recruited 20 informal carers in 10-months, representing 0.08% of invited carers randomised with high attrition in the intervention arm. Lack of GP recognition, gatekeeping and barriers to accessing psychological support identified as reasons for poor recruitment. Conclusions: A greater appreciation is required concerning barriers experienced by informal carers of stroke survivors to accessing support for depression and type of acceptable psychological support.

No / Complete : FC 16. We aimed to develop a complex intervention to improve end of life care (EOLC) for people with advanced dementia and their carers. We collected data from 4 sources: literature review; qualitative data from health and social care professionals, carers and people with early dementia; quantitative data from people with advanced dementia and their carers; review of UK health and social care policy documents. Method and results: To develop the intervention we synthesised these data. 49 emerging statements were considered in workshops with health and social care professionals across UK to achieve consensus using the RAND Appropriateness Method (RAM) to develop components of the intervention. 1. Prior to workshops we sent invitees the RAM form consisting of 49 statements and asked them to rate these on a scale of 1-9 for appropriateness. 2. At the workshops statements rated as ‘uncertain’ or ‘inappropriate’ were discussed and all 49 items were rated again. 3. Analysis resulted in the retention of 29 statements rated as appropriate. 4. Post workshop attendees were sent the RAM form and asked to rate 29 statements for necessity. All 29 statements were rated as necessary and retained then mapped onto impact theories (Grol 2007) comprised of individual, social interaction, organisational or political/ economic context, and categorised as enablers and barriers for an intervention. Three core intervention components emerged: 1. Integrated systems and approaches to the delivery of careoperational plan 2. Education, training and support for health and social care professionals and carers - utilisation plan 3. Political and economic context dependent on reimbursement and contracting through CCG commissioning. Discussion: The next phase is to pilot components 1 and 2 of the intervention in a naturalistic experiment in one inner city and one suburban locality at different stages of development for services for EOLC for people with dementia and their carers.

Bakgrund: Allt fler kommer drabbas av demenssjukdom och fler anhöriga kommer påverkas av att bli vårdande anhörig. Tidigare studier har visat att anhöriga behöver stöd under den period som de vårdar sina närstående med demenssjukdom. Att vara anhörig till en närstående som är demenssjuk påverkar anhörigas hälsa och välbefinnande. Hälso- och sjukvårdspersonal finns tillgänglig under hela perioden: från diagnos till flytten till ett boende. Det har även noterats om vikten med informella personers stöd. Nationella riktlinjer finns sedan tidigare om att stötta och erbjuda utbildning till anhöriga i deras situationer, men det är oklart huruvida detta uppfylls. Hälso- och sjukvårdpersonal innehar kunskap men det noteras en brist på förståelse för den situation anhöriga befinner sig i såväl som vårdande anhörig i ordinärt boende som efter flytten till äldreboende. Syfte: Syftet med studien var att belysa anhörigas upplevelser av formellt och informellt stöd genom sjukdomsförloppet vid demenssjukdom.  Metod: Studien är en kvalitativ intervjustudie där sju anhöriga, som tidigare varit vårdande anhöriga men som nu har närstående boendes på äldreboende, intervjuats. Intervjuerna var semistrukturerade och analys genomfördes med hjälp av kvalitativ innehållsanalys. Resultat: Resultatet visade att stöd och utbildning inte endast behövs i början av demenssjukdomen när diagnos ställs utan är något som kontinuerligt behöver erbjudas under processens gång och ges till anhöriga. Ett stöd var av vikt även efter flytten till ett boende. Det framkom även att kommunikation och kompetensutveckling i form av utbildning kring demenssjukdomen är en viktig del för att kunna förbättra relationen mellan hälso- och sjukvårdspersonal och anhöriga. Brist på kommunikation och en dålig relation mellan anhöriga och hälso- och sjukvårdspersonal ledde till psykisk ohälsa och lidande för anhöriga. Informellt stöd i form av grannar och familj var av stor betydelse för anhöriga. Slutsats: Det finns en viktig del som specialistsjuksköterska/sjuksköterska kan göra vilket var bland annat att ge kunskap till anhöriga och till personal om demenssjukdom under hela processen. Det kan förbättra ett bemötande och skapa en god relation med anhöriga, men det kan även ge mer kvalité till vården och genom detta ge trygghet till anhöriga. Genom tillämpning av relationscentrerad vård tillsammans med personcentrerad vård kan det ge stöd och delaktighet till anhöriga. Det var viktigt att stödet var individualiserat för anhöriga och att hälso- och sjukvårdspersonal får en förståelse för deras situation och de känslor de har. / Background: More people will be diagnosed with dementia and more relatives will be affected and become informal carers. Previous studies show that informal carers need support during the period they care for their relative with dementia. To be an informal carer to a next-of-kin affects the carers’ health and well-being. Healthcare staffs are available during this whole period: from diagnosis to the placement at a nursing home. It has also been noted of the importance of informal persons support. There are national guidelines about support and to offer education to informal carers in their situation, but it is unclear how this is fulfilled. Healthcare staff beholds knowledge but there is noted a lack of understanding for the situation informal carers are in, both during the time of caring and after the move to a nursing home.   Aim: The aim of the study was to illuminate informal carers experiences of formal and informal support through the course of the dementia-disease. Method: The study is a qualitative interview study, where seven informal carers were interviewed. The informal carers had previously been carers, before their relatives moved in to a nursing home. Semi-structured interviews were conducted and were analyzed with qualitative content analysis. Result: The study show that the support and education is not only needed in the beginning of the dementia disease when the diagnosis is set, but support needs to be offered continuously and given to informal carers during the whole disease trajectory. Support is needed even after the move to a nursing home. It has been shown that communication and developing competence in forms of education about dementia is an important part to improve the relationship between informal carers and healthcare staff. Lack of communication and a bad relationship between relatives and healthcare staff led to mental ill health and suffering for the relative. Neighbours and family members gave informal support, and this was of importance for the informal carer.  Conclusion: There is an important part that specialized nurses/nurses can do and that is to give or offer knowledge to informal carers and to healthcare staff about dementia during the whole process. It can improve the treatment of patients with dementia and their informal carers and through this create a good relationship and the feeling of safety, and also improve the quality of care. By applying relationship-centred care with person-centred care can give the feeling of support and participation to informal carers. It is also of importance that support is individualized for relatives and that healthcare staff has an understanding for their situation and the emotions they have.

This thesis deals with informal (family) carers who provide for the care of an elderly person in their home environment. It focuses on selected moments of crises (motivation, accepting support, financing, impacts) based on the analysis of documents and the author's two-year working experience in this field. The objective of this thesis is to find out how the carers cope with such crises and what strategies they choose in their provision of care. The theoretical part of the thesis defines basic terms related to old age and their values, informal carers and related areas of care, including pre-defined crises. The research part is divided into methodology, in which part the author describes her methods of obtaining data through semi-structured interviews; and into the empiric part, which is based on the statements of the carers interviewed. Keywords: informal carers, family carers, senior, crisis

1 Abstract Informal care is one of the important sources of the help and support provided at home to the seniors requiring the assistance from other people. This topic is highly relevant since it is linked to the growing need of long-term care of seniors reflecting the ageing of population in developed countries. The care provided by informal carers is important also because of the changes in the social services. The changes are related to the shift from institutional care of depending persons including seniors to the social services provided in the natural social environment. Such approach supports the autonomy of clients. This master degree thesis addresses the support of informal carers in the area of the care of non self-sufficient elderly people. The investigation is focused on the needs of informal family caregivers as for the information support, financial support, the support from the social services and the support expected from the services of long-term residential care. The thesis also deals with the motivation of the carers and their understanding of the social context of provided care. The research which is included in the empirical section of the thesis was implemented through qualitative methods, namely using semi-standardized interviews. The interviews with ten informal carers were carried...

The diploma thesis deals with mixed forms of elderly care in the Czech Republic. The aim is to identify the advantages and potential disadvantages of mixed forms of elderly care in connection with informal carers' mental health and social life. There are 2 groups of informal carers distinguished within the research - those, who get professional care help and those, who care alone or get just a little professional care help. Mixed methods design, which combines quantitative and qualitative research, was used to study the world of informal carers. The quantitative part is based on data from a research Podpora neformálních pečovatelů, which were selected by STEM/MARK agency in 2014. Qualitative research is based on 10 in-depth interviews with informal carers. Both pieces of research are integrated in a phase of data analysis by the explanation method. Informal carers' mental health problems and social problems and its intensity in connection to mixed forms of elderly care are formulated in the results. The thesis also presents factors, which influence mental health problems and social problems. The results showed that using professional care help simultaneously with informal elderly care has a positive impact on informal carers' mental health and social life. Nevertheless, the influence of mixed forms...

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,...