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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

The poor outcomes of young people leaving foster care are well documented and demand a focus on placement permanency and interventions that encourage stability (Rubin et al, 2007). The need for better support for foster carers is widely acknowledged (Warman, Pallet & Scott, 2006; Morgan & Baron, 2011). To provide effective support an understanding of foster carers support needs is required. A qualitative approach explored the support needs of foster carers who look after young people perceived to have emotional and behavioural difficulties. Semi- structured interviews were undertaken with 17 foster carers employed by a local authority or an Independent Fostering Agency. A grounded theory methodology within a social constructionist framework was used to develop a new theoretical understanding from the data. A central storyline of ‘keeping your head above water’ emerged and appeared to encapsulate daily struggles and ways of managing. Categories which contributed to this were ‘becoming isolated’ from other professionals, ‘role ambiguity’ regarding the multiple meanings attached to being a foster carer, ‘making sense of emotional and behavioural difficulties’ highlighting a need to understand the children cared for, ‘a focus on behaviours’ illuminating approaches to parenting and ‘unmet emotional needs’ which is a possible consequence of focussing on children’s behaviours. The emergent theory may hold potential for developing psychological formulations, interventions and training programmes for foster carers. Suggestions for future support are put forward based on the new theoretical framework. Applications of the findings to Counselling Psychology are discussed in detail.

<p> </p><p>With this study I wanted to capture the experience of support and increase the knowledge of what it means for women who are living with a husband who suffers from dementia. To do so I conducted four interviews and used an informal questionnaire. The result shows that there are four key words that can symbolize what the women experience as support: communica-tion, freedom, understanding and knowledge. The women’s experience of support range from meaningful and secure to not satisfying and complicated. Living with a husband who suffers from dementia has made their lives very different from before. But even if they sometimes are in a tough situation they want to take care of their husbands. Being able to go away a few hours or half a day once a week, can sometimes be enough and gives the women a sense of satisfaction. On the other hand it is not certain that the support offered is what the women need or that it is satisfactory for the husband. The link between the women’s experience of support and that of their husband is strong. And if the husband is not pleased nor will the wife be.</p>

People with learning disabilities constitute about 2% of the general population. Epilepsy is more prevalent among people with learning disabilities compared with the general population. Effective communication is central to the management of people with learning disabilities and epilepsy. It has both therapeutic and health promotion functions including psycho-social benefits to the individual and their carers. Carers play vital roles in supporting individuals who live in the community to manage their conditions and the need for effective communication between service users and health care professionals is crucially important. Effective communication may not only lead to improved quality of life but may reduce mortality through the promotion of better understanding of seizures and encouraging efficient use of medication. Despite this communication regarding community-based adults with mild learning disabilities has not been fully studied, in particular the service users‘ views and experiences regarding communication has been a neglected area. Yet, the service users‘ views may be the best source for the definition of effective communication. This study was triggered by the paucity of research that investigated service users‘ views and experiences regarding communication. Furthermore, numerous health policies have been formulated that emphasise the involvement of patients as consumers in the provision and delivery of health services. This study is purported to bridge this communication gap by offering service users a rare opportunity for them to express their views and experiences regarding communication to inform health policies and clinical practice. This study adopts a naturalistic qualitative approach and employs in-depth semi-structured interviews to solicit service users‘ and their carers‘ views and experiences regarding communication. The interviews also investigated service users‘ and carers‘ perspectives in regard to communication with health care professionals‘. Carer communication diaries were used to supplement the carers‘ interview data and also to endorse the credibility of the study findings. Six main findings emerged from this study that described service users‘ and carers‘ views and experiences regarding communication: communication needs and expectations; ‗engagement‘ as a predictor of effective communication; strategies of communication; facilitating factors of communication; methods of communication; barriers to communication. This study suggests that effective communication with people with learning disabilities and epilepsy requires a reflective model that incorporates self-assessment and awareness of the individual‘s communication needs and expectations. The model and recommendations that emerged from this study may be a useful resource for health and social care professionals.

Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called ‘working carers’, there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support. This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT. An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff’s experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers’ experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV). Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened. In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers’ needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier. Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers’ deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.

Bakgrund: Antalet personer som lever med en demenssjukdom i Sverige är uppskattningsvis mellan 110 000 till 170 000. Den verbala och ickeverbala kommunikationen är betydelsefull för att möta denna grupp av personer i samspelet och i vårdandet. Svårigheter att förstå och tolka personen med demenssjukdomen komplicerar omvårdnadssituationen vilket gör att kommunikationen blir till en utmaning för vårdaren. Syfte: Syftet var att beskriva vårdares kommunikation med personer med demenssjukdom. Metod: En litteraturöversikt genomfördes där åtta artiklar söktes fram genom att använda kombinerade sökord. Analysen genomfördes med hjälp av Fribergs metodbeskrivning över analys vid litteraturöversikt där fokus låg på att skapa en översikt över den aktuella befintliga forskningen. Resultat: I litteraturöversikten identifierades tre teman: Kommunikationens betydelse i omvårdnadssituationen berörde hur verbal och icke verbal kommunikation ökade förståelsen för personen, Kommunikationens betydelse i bekräftande omvårdnad berörde hur vårdarens följsamhet för personens känsla av verklighet präglade omvårdnadssituationen och Kommunikationens betydelse för det relationsskapande vårdandet berörde hur individuellt anpassad omvårdnad påverkade samspelet med personen. Diskussion: Diskussionen fördjupade sig kring ämnena Relationens betydelse i vårdandet, vårdares kompetens och kunskap och kommunikationsstrategier som en omvårdnadsåtgärd, samt återkopplade till Feils teori om validationsmetoden och det vårdvetenskapliga konsensusbegreppet vårdande. / Background: The number of persons with dementia disease in Sweden is approximately between being around 110 000 – 170 000. The verbal and non-verbal communication is important to meet this group of people while interacting and caring for this group. Difficulties in understanding and interpreting persons with dementia complicate the care situation, which means that communication becomes a challenge for the caregiver. Aim: The objective was to describe carers’ communication with persons with dementia disease. Method: A literature review was conducted in which eight articles were sought through the use of combined keywords such as carer, communication and dementia. The analysis was conducted using the method of literature reviews described by Friberg which focused on creating an overall summarization of the existing research. Results: The literature review identified three different main themes: The importance of communication that involves verbal and nonverbal communication and its effects in the interaction with the person. The importance of communication in confirming nursing involves how the effect of knowledge of the person’s lifeworld characterized nursing situations. The importance of communication when creating caring relationships involved how individually adapted caring actions effected interactions with the person. Discussion: The discussion focused on the topics: the meaning of the caring relationship, the knowledge and competence of the carer, and communication strategies as a caring action. It also made connections to Feil’s theory on validation and the common nursing concept of caring.

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.

Unpaid carers are known to be at heightened risk of poor outcomes (e.g. financially, physically and emotionally). Conversely it is known that carers can have positive experiences through their caring role and continue to experience good well-being even when distress is present. The study proposes that mindfulness, psychological inflexibility and valued living may moderate the relationship between distress and well-being in carers and therefore help ameliorate some of the potentially negative consequences of caring.

This study aims to develop an understanding of the lived experience of family carers of people with PIMD and dysphagia, in relation to mealtimes and food. Policy in recent years has begun to address the inequalities faced by people with learning disabilities and it is striving to improve their lives and the services offered to them. People with profound intellectual and multiple disabilities (PIMD) often have additional eating and drinking difficulties (dysphagia). People with dysphagia require ongoing support and guidance, to maximize their health, specifically their nutrition and hydration. In order to ensure that this support is appropriate, useful and sensitive to the needs of individuals and their families, it is important to try and view mealtimes through the eyes of these individuals and their families. The aims of this study emerged from observations made during my clinical work as a Speech & Language Therapist (SLT) and from engaging in discussion with family carers. In particular it has become increasingly clear from clinical practice that family carers often have different points of view about their son or daughter with profound intellectual and multiple disabilities, than those of professionals. These different points of view are often not clearly articulated by carers or professionals, and clinical interventions may become marked with conflict. This study is sited within a mental health and learning disability NHS trust in the north east of England. It utilises a phenomenological methodology and employs mixed methods to obtain data. Data collection took place between June 2013 and August 2014. Medical descriptions do not capture how it feels to live with impairment and resulting disability. Only when we examine this and allow individuals to tell their stories, as experts in their experiences, can we understand and offer support accordingly and ensure more functional and beneficial interactions and interventions. Findings are presented around four themes – the meaning of food and mealtimes, relationships, roles within the family and challenges. Findings are discussed in relation to the existing literature and recommendations are made for practice and for future research. During this study the adult child is mainly referred to as the ‘child’. For clarity, this is not in any way meant to convey the individual’s presentation as having PIMD as akin to being a child. The term is used to represent the relationship between the parents and the child. Despite the fact that the individuals are adults, they are still the children of the parents, and the relationship is a parent-son/daughter relationship. For brevity the term ‘child’ is used in preference to ‘adult child’. The use of the term has been agreed with the parents participating in the study. All names are assumed and have been chosen by the participants. In the course of this thesis the direct giving of food to the individuals with disabilities is termed ‘feeding’. I acknowledge this term may be associated with potentially negative connotations. The term ‘feeding’ has been used because it is the term used widely in the literature, because it was used by the family carers in their narratives and because there is no other suitable substitute which adequately describes the direct provision of food from one person in to the mouth of another.