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HUNG, Sing Nam. "Exploring the changing relationship between formal carers, informal carers and carees during the elder-care process". Digital Commons @ Lingnan University, 2004. https://commons.ln.edu.hk/soc_etd/18.
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There are increasing studies looking at effects of caregiving to the frail elderly in Hong Kong. However, many studies often focus only on a single dimension of caregiving in either informal or formal carers without the focus on the elderly that receiving cares. Few studies have viewed elder caregiving as an integrative and dynamic approach, with limited examination and exploration on the caring processes and interactions between the formal and informal carers and elderly carees, and the reasons for this pattern.
Thus a caregiving triad might be considered as consisting of the elderly caree, the formal and informal carer, and a tripartite model could be adopted to explore the interactions and interrelationship between the three parties.
The present research aimed to explore the changing caring relationships among carers and carees in home-based setting; the meanings behind the different caring patterns amongst the formal informal carers as well as the elderly carees and; to provide suggestions and implications for providing better care services for elderly recipients in home-based setting.
The methods used in the present study are mainly qualitative in approach, with in-depth interviews and focus group discussion. In order to ensure the credibility of the research, triangulation of various data sources is used to provide fuller picture and understanding of the research findings.
Since this is an exploratory study, a small sample was used (N=18). In order to get a deeper understanding of the caregiving process and patterns, in-depth interviews with elderly people, their family caregivers and the formal caregivers were conducted in this study. The interviews were guided by a theoretical framework with interview guidelines. Thematic analysis was used to explore the caring relationships and pattern.
A total of 6 cases with 18 people (6 elderly people, 6 family caregivers and 6 formal caregivers) were successfully interviewed from June to September 2003.
The present study found that between the informal and formal carers, substituting and complementing effect are the most obvious through the interaction pattern. The substituting effect mainly comes from the perception of quality services by the informal carers and they think that professional and advanced care services are better to be provided by formal carers.
Regarding the complementing effect, it is found that sharing of tasks between the formal and informal carers are common through the research. Informal carers might share tasks to formal carers when they did not have time to do. Tangible supports are more often supported by formal carers and both formal and informal carers would provide intangible support.
On the side of carers and carees, both formal and informal carers are found to interact in a form of reciprocal and obligation. The continuation of care of informal carers is mainly due to the martial relationship and filial piety. The caring meanings of formal carers are varies, including the economic reward, gratification and job satisfaction and also the caring can benefit their personal growth and development.
The findings shed some light on the roles played by the three parties. It was necessary for all parties to cooperate in striving for the best quality of care. Hence more information of the perceived roles and expectations among the three parties should be further explored in order to get the optimal caring patterns. Since the optimum form of the caring relationships depends very much on the community resources available and also on the values upheld by the three parties, to achieve the greatest satisfaction of them and enhancing their quality of life, it is advisable to conduct further study on their expectations towards the caring tasks, process, and relationship while advocating their empowerment in the continuum of care.
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Chiu, Jessica. "Young caregiving: developing the Young Carer Issues Inventory (YCII) and comparing young carers to non-carers /". [St. Lucia, Qld.], 2004. http://www.library.uq.edu.au/pdfserve.php?image=thesisabs/absthe19267.pdf.
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Okochi, Miwa. "Early caregiving : comparisons between carers and non-carers /". St. Lucia, Qld, 2004. http://www.library.uq.edu.au/pdfserve.php?image=thesisabs/absthe17728.pdf.
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Beaumont, Meredith Alexandra Hanne. "Young carers and education". Thesis, University of Nottingham, 2013. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.604284.
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Informed by the sociology of childhood, children's rights and the work of John Dewey, this mixed methods study used an exploratory sequential design to analyse the relationship between caring and education. Semi-structured interviews and an online survey involved young carers and a control group from across England and Wales. Qualitative data were analysed thematically and quantitative data were subject to statistical testing. Demographic, familial, and school factors were included in tests for association. Variations in levels of care provided, care recipient and types of care were also incorporated. An email survey of schools and local authorities provided an assessment of existing policies or strategies with specific regard to meeting the educational needs of young carers. Findings revealed several new contributions to knowledge. There was a reduced likelihood for young carers to report that their parents attended parents' evenings or be involved in schools in other manners, such as in the Parent Teacher Association. This was reported to arise from the inaccessibility of schools for a parent with a disability or health condition. Young carers were as likely to believe education is important for their future, although they were more likely to aspire to pursue a 'caring profession' beyond education. Those caring for a parent/guardian with a mental health issue, substance misuse problem, learning difficulty or comorbidity, experience a higher rate of detrimental emotional outcomes. Furthermore, those with the most negative adaptation to caring were also those least able to do most school work without assistance. Potential young carers with high caring levels were discovered within the control group sample. Data show for the first time that these young people had predominantly sibling, domestic or household tasks rather than personal, emotional and financial/practical responsibilities, which young carers do. However, both of these groups report more specific and negative experiences and outcomes in school than children with no caring role. General and specific policy suggestions are made particularly for addressing the lack of young carers' policies and practice at the school level. Improved teacher training, focus on identification and targeted interventions are discussed, to address the needs of young carers educationally.
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Zanasi, Francesca. "Carers and Careers. Grandparental care investment and its labour market consequences in Europe". Doctoral thesis, Università degli studi di Trento, 2020. http://hdl.handle.net/11572/258594.
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As life expectancy increases, grandparents spend a longer part of their life with grandchildren, which opens opportunities for sharing time, resources, and affection. The present dissertation aims at investigating the content of the grandparent-grandchild relationship and, at the same time, the consequences that becoming a grandmother could have on mid-life women’s labour market participation. It revolves around three main contributions. First, it approaches grandparenting from a stratification perspective, putting forward that grandparents could perform different activities with grandchildren according to their educational levels. Second, it investigates grandmothers’ transition to retirement as driven by the institutional context, which shapes both the extent to which grandparental childcare is needed as support for the younger generations (measured through the availability of childcare services) and the extent to which it is easy and attractive to withdraw early from the labour force for old-age individuals (measured through the generosity of the pension system). Finally, it considers grandmothers’ labour market withdrawal as enabled, or constrained, by women’s previous work history, with two case-studies: England and Italy. In fact, decisions taken earlier in life on work-family reconciliation, on the one hand, could be reproduced in late-life upon the grandchild’s birth; on the other hand, years worked, and kind of job held open different routes for retirement. Taken together, the present dissertation unveils that grandparenthood is a multifaceted phenomenon, which must be studied in a multi-generational framework and by considering demographic, social, and institutional trends of current European societies.
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Jegermalm, Magnus. "Carers in the Welfare State : On Informal Care and Support for Carers in Sweden". Doctoral thesis, Stockholm University, Department of Social Work, 2005. http://urn.kb.se/resolve?urn=urn:nbn:se:su:diva-642.
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The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the ‘heavy end’ of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I).
Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II).
The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II).
The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84.
In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government’s special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III).
Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government’s special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV).
In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm.
In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.
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Wainwright, June. "Family carers of adults with severe mental illness : conceptualising carer experience and need". Thesis, Durham University, 1997. http://etheses.dur.ac.uk/1641/.
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Plummer, Carol. "Who cares? : an exploration, using Q methodology, of young carers' and professionals' viewpoints". Thesis, University of Sheffield, 2012. http://etheses.whiterose.ac.uk/2685/.
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Johnson, Eileen Mary. "The health of informal carers". Thesis, University of Central Lancashire, 2002. http://clok.uclan.ac.uk/20022/.
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In order to advance our understanding of informal carer health, this mixed-method research was conducted amongst a large, general population of informal carers. Initially, a postal survey was carried out using the UK version of the Short-Form 36 (SF-36) health status questionnaire. The study population, which was composed of 578 participants, was drawn from the carer mailing lists of voluntary sector organisations in four geographically distinct areas in the North West of England. The participants' scores for SF-36 were compared with those of a small group of non-carets and UK normative data for this measure. These evaluations revealed that the participants' health was dramatically inferior to that of a normative population across all eight health dimensions addressed by the SF-36. Moreover, following the performance of a further evaluation, the health of the participants was shown to be comparable to or worse than that of patients with a variety of medically diagnosed conditions. A subsequent series of in-depth interviews with 28 of these participants validated and expanded upon the findings of the quantitative survey. Furthermore, data from these interviews demonstrated clear associations between the participants' health status and their social and political milieu. A coherent theory, which contributes to our current knowledge of caret health, was developed from these research findings.
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Parslow-Breen, Orla M. "Lesbians as family elder carers". Thesis, University of Surrey, 2016. http://epubs.surrey.ac.uk/811591/.
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Extant caregiving research indicates family caring as being a female gendered task and the family caregiver as a related, heterosexual, female. On the other hand, research examining caregiving by the LGBT population is focused on partner caregiving or parenting. Taken together, the experiences of lesbian family caregivers remain unexamined by both caregiving research and LGBT psychological research. To redress this omission four empirical studies were undertaken. Study One was a Foucauldian genealogy, which aimed to establish how the current construction of the informal carer concept came into being. The analysis highlighted how the current carer concept influences research leading to some carers being considered more valid than others. Study Two examined the elder caregiving experiences of lesbian women (n = 10) using grounded theory methodology. Issues pertaining to lesbian identity, privacy and living as an “out” lesbian were raised. Study Three explored the anticipated future caregiving involvement with aging families of young lesbian women (n = 20) using thematic analysis. The young women anticipated future, unproblematic, connectedness with their families, as well as future lesbian created families of their own. Study Four examined how a general population (n = 324) perceived lesbian family caregiving using a vignette questionnaire with 8 conditions. Overall an effect of modern homonegativity was found. In sum, the lesbian caregiver experience is elided due to the dominant heteronormative family discourse that dictates the focus of caregiver research. Examining the lesbian caregiver experience indicates unique issues for lesbian carers around the loss of lesbian identity, loss of lesbian social networks, and difficulties in lesbian identity performance within the home. Younger women anticipated providing family elder care, but did not envisage sexual orientation related problems. While general perceptions of lesbian caregiving are mediated by modern homonegativity that work to deny the lesbian carer agency.
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Sardadvar, Karin, e Ingrid Mairhuber. "Employed family carers in Austria". Springer Nature, 2018. http://dx.doi.org/10.1007/s11614-018-0283-0.
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In this contribution, we investigate the relationships between paid and unpaid work in the lifeworlds of employed informal carers against the background of the Austrian long-term care regime. We pursue a twofold argument: On the one hand, we emphasize that combining paid and unpaid work currently poses serious difficulties for employed family carers in their everyday lives and impacts their current and future financial and social security. On the other hand, we argue that the relationships between employment and informal care are in fact not well understood by the common concepts of "reconciliation" or "work-life balance". These concepts are not able to explain the complexities of employed carers' lived realities and fail to adequately address the fundamental contradiction in the idea of a "reconciliation" of paid and unpaid work.
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Legg, Lynn A. "Informal carers of stroke survivors". Thesis, University of Glasgow, 2012. http://theses.gla.ac.uk/3123/.
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In an effort to identify further published, unpublished and ongoing studies, conference proceedings and trials registers were searched, reference lists of relevant articles were scanned and researchers and authors in the field were contacted. Selection criteria: Studies were included if the focus was on; study participants as a provider of care to a stroke survivor living in the community, had no restrictions on admissible participants, had no restrictions on type of stroke patient, depression was measured using standard criteria and measures of occurrence of depression presented in a binary format (i.e., depressed/ not depressed). Types of epidemiologic study eligible included: cohort studies, case-control studies, including prevalent case-control studies and cross sectional studies, including prevalence studies. Data collection and analysis: Two review authors selected studies for inclusion, independently extracted data and assessed methodological quality. Estimates of pooled prevalence were calculated using inverse variance methods. Results: 19 studies were identified. 12 studies used a single cohort design and six studies used a cross sectional design. One study is ongoing and awaiting assessment. No cohort studies included a referent or comparator group of people who were unexposed to providing informal care. Data on prevalence of depression were available from 16 studies (1848 participants). No studies were identified that collected data on incidence of depression. No investigators reported including participants to cohort studies that were free of depression at the initial observation. The estimates of prevalence of depression are based on the number of people who scored above a clinical cut point on a self-report dimensional rating scale for depression. The overall pooled prevalence estimate calculated using the inverse variance method using a random effects model was slightly lower (28%, 95% CI 23%, 33%) than when the analysis was restricted to studies with an ideal design (30%, 95% CI 25%, 34%). The majority of studies lack a description of important characteristics that define the informal caregiver population. Lack of a clear and unambiguous operational definition of informal care is common across studies. Conclusions: Estimates of prevalence of depression in people who provide care to informal stroke survivors are similar to those observed in community studies of the prevalence of depression. There is currently insufficient evidence from epidemiological studies to suggest and association between the provision of informal care and the development of depression. Chapter 5 Non-pharmacological interventions for informal carers of stroke survivors. Synopsis of chapter 5. Chapter 5 focuses on the analysis and evaluation of the existing literature on the effects of non pharmacological interventions targeted towards people who provide informal care to stroke survivors. For presentation purposes, this chapter is divided into several sections. Section A describes the background and rationale for the systematic review. Section B describes the methods of the review including the types of participants, types of interventions, types of outcome and types of study, searching for studies, selecting studies and collecting data, assessing risk of bias in included studies, methods for analysing data and undertaking meta-analysis. Section C presents the meta-analysis of the relevant studies. The results are presented and discussed. Abstract. Background: A substantial component of care is provided to stroke survivors by informal caregivers. However, providing such care is often a new and challenging experience and has been linked to a number of adverse outcomes. A range of interventions targeted towards stroke survivors and their family or other informal caregivers have been tested in randomised controlled trials (RCTs). Objectives: To evaluate the effect of interventions targeted towards informal caregivers of stroke survivors or targeted towards informal caregivers and the care recipient (the stroke survivor). Search methods: The Cochrane Stroke Group Trials Register (last searched March 2011), the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library Issue 4, 2010); MEDLINE (1950 to August 2010), EMBASE (1980 to December 2010), CINAHL; (1982 to August 2010), AMED (1985 to August 2010), PsycINFO (1967 to August 2010) Science Citation Index (1992 to August 2010) and six other electronic databases were searched. In an effort to identify further published, unpublished and ongoing studies, conference proceedings and trials registers were searched, reference lists of relevant articles were scanned and researchers and authors in the field were contacted. Selection criteria RCTs were included if they evaluated the effect of non-pharmacological interventions (compared with no care or routine care) on informal caregivers of stroke survivors. Trials of interventions were included if they delivered to stroke survivors and informal caregivers only if the stroke survivor and informal caregiver were randomised as a dyad. Studies which included stroke survivors and caregivers were excluded if the stroke survivors were the primary target of the intervention. Data collection and analysis: Two review authors selected studies for inclusion, independently extracted data and assessed methodological quality. Original data was sought from trialists. Interventions were categorised into three groups: support and information, teaching procedural knowledge/vocational training type interventions, and psycho-educational type interventions. The primary outcome was caregivers' stress or strain. Disagreements were resolved by consensus. Results: Eight studies, including a total of 1007 participants, met the inclusion criteria. The results of all the studies were not pooled because of substantial methodological, statistical and clinical heterogeneity. For caregivers' stress or strain no significant results were found within categories of intervention, with the exception of one single-centre study examining the effects of a 'vocational training' type intervention which found a mean difference between the intervention and comparator group at the end of scheduled follow-up of -8.67 (95% confidence interval -11.30 to -6.04, P < 0.001) in favour of the 'teaching procedural knowledge' type intervention group Conclusions: It was not possible to carry out a meta-analysis of the evidence from RCTs because of methodological, clinical and statistical heterogeneity. One limitation across all studies was the lack of a description of important characteristics that define the informal caregiver population. However, 'vocational educational' type interventions delivered to caregivers prior to the stroke survivor's discharge from hospital appear to be the most promising intervention. However, this is based on the results from one, small, single-centre study. Chapter 6 Conclusions. Synopsis of Chapter 6. This chapter, after outlining the findings of the individual studies included in this thesis and how they fit into the broader literature, makes observations about the approach that has been taken and lessons learned, some with the benefit of hindsight, in order to inform future research work on informal carers. This chapter also examines the structure, purpose, limitations, use and misuse of the informal care epidemiological literature. The chapter finishes with recommendations for future research, clinical practice and policy.
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Sloan, Brian Damien. "Informal carers and private law". Thesis, University of Cambridge, 2011. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.609328.
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Rose, C. "For love or money : The relationships of kin carers, foster carers and their adult dependants". Thesis, University of Essex, 1988. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.234256.
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Simpson, Rosemary G. "Carer held records : empowerment of carers of patients with dementia living in the community". Thesis, University of Leicester, 2003. http://hdl.handle.net/2381/31186.
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Recognition that family carers have valid personal knowledge of their relatives with dementia is very important when tailoring care packages to individual needs (Kitwood & Bredin 1992). Carers' well being is also essential for the continued management of patients in the community. A carer held record was designed to be kept at home by carers, in which carers might contribute to care plans for their relatives with dementia, alongside all involved professional disciplines and agencies, and be recognised as equal partners with professionals in providing the best possible care. A pilot study was conducted in 1996 the results of which informed the follow up definitive research (Simpson 1996) Aim To establish whether there are measurable benefits for carers who hold these multidisciplinary records in the areas of health, stress, knowledge of the illness and control. Methodology This is a longitudinal study with a subject group of carers who hold a carer held record, and a comparison group who do not. Questionnaires were completed by both groups at four time intervals over an eighteen month period. Outcome measures concern carers' stress and strain levels, physical and mental health, perceived burden, locus of control, and dementia knowledge, as well as their relatives' cognitive decline. Results Repeated measures ANOVAS for all outcome elements were used in data analysis. Qualitative analysis of use of the carer held record is included in the results. No significant differences were found on the Burden Scale or the aspects of carer stress selected for this study from the Carer Stress Scale (Pearlin et al, 1990). No significant health gains were found. However, subjects have been shown to have significantly lower scores on the Carer Strain Index (Robinson 1983) than controls, and significant changes were highlighted for subjects in aspects of locus of control.
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Han, Jeong-Won. "Who cares for carers? : Women's caring in work for elderly people in South Korea". Thesis, University of Sussex, 2003. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.271891.
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Carey, Marian Elizabeth. "The information needs of informal carers". Thesis, University of Central Lancashire, 1999. http://clok.uclan.ac.uk/20301/.
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This thesis is concerned with the information needs of informal carers, or, as they are now increasingly referred to, carers Within this thesis, the appellation carer is defined in terms chosen by carers themselves. In their words, • A carer is someone whose life is restricted by the need to assist another person to live independently at home. Information is similarly defined by reference to the perspective of the carers, whose information needs form the topic of this research. For the purposes of this thesis, therefore, information is defined as follows • information is all knowledge, ideas, facts and data which are communicated in any format either formally or informally, and which, for whatever reason, are needful for carers to know. Information has been identified as a key requirement by most of the surveys undertaken of carers since 1988. Most surveys of carers and their needs have noted the absence or deficiency of this critical resource; yet relevant information is prolific, and accessible through a multiplicity of mechanisms and formats. This thesis set out to answer four important questions: • Why, when information appears to be so widely accessible, do carers continue to assert that lack of information remains one of their key problems? • What is the role of workers and other professionals in information provision to carers? • What changes to current information provision and dissemination would remove the obstacles to carers obtaining the information they need? • Is there a role for the public library service in either creating or overseeing the provision of an information strategy for carers? These questions were examined within a Leicester-based study of a group of carers of older people, and carers who were themselves older people, during the period 1994-1996. The study followed a qualitative methodology and used a number of methods. The chief of these entailed the researcher, in her professional role as Community Care Librarian, acting as a critical friend, that is one, who through understanding the context of the presenting situation, is able to offer a helpful critique, a valued judgement and an honest response. This approach elicited a wealth of qualitative data through telephone contact with carers on a regular and frequent basis during a period of fifteen months. The study also included a sample of workers and potential information providers, already having professional responsibilities in the households of the participating carers and who were involved through a series of focused semi-structured interviews. The workers represented a range of health, social services and voluntary sector teams and organisations. The data obtained from this study was particularly rich and subtle, providing unexpected insights into considerably more than information provision, as well as confirmation of certain conjectured findings. For example, the results indicate that the carers in the study were proactive information seekers, rather than passive recipients of information despite having poor formal and informal information networks. As a result, they were almost entirely dependent upon the professional workers as sources of information. Because of restrictive multi-disciplinary and inter-agency working and a lack of systematic and effective information support, workers were unable to fulfill all the carers' expectations in this regard. The study would indicate a crucial role for an agency able to devise an effective information strategy, suitable to meet not only the needs of carers, but also of others similarly disadvantaged in information provision. Such an agency could itself act as an holistic information provider, or else take responsibility for overseeing such a service. In the perception of the study participants the public library service, in theory uniquely placed to fulfill such a role, held a low profile as an information provider. If such an opinion were to be confirmed amongst the general population, it would seem that this role could not automatically be assigned to public libraries. However, the availability of insufficient evidence to either corroborate or refute such an opinion resulted in this particular research question remaining unanswered.
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Jayalath, Dilini. "Reverse journey in dementia : a clinician's research journey leading to the development of carers' diaries". Thesis, University of Hertfordshire, 2017. http://hdl.handle.net/2299/17475.
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Dementia is a progressively debilitating disorder often of insidious onset. When making the initial assessment or reviewing ongoing care of patients living at home, healthcare professionals rely on verbal information provided by person with dementia and their informal carers. Diaries have been used in very few instances to assist with gathering information about persons with dementia in the community. The review of literature found that there are very few studies that used carers' diaries in the context of dementia care and its effects on carers and patients, and there was no previous study that had used carer diaries in the assessment of dementia patients' problems in everyday life. It was also noted that no previous study has assessed the validity of these retrospective self-reporting by patients with dementia and their carers. If these self-reports are indeed unreliable and provide averaged impressions rather than actual fluctuations of frequency and magnitude of symptoms, then caregivers' diaries of these symptoms/problems can provide important and valuable additional information to clinicians. The main aim of this study was to capture a variety of problems (cognitive, emotional, behavioural, etc.) in people with dementia, using diaries kept by carers for a week and comparing with carers' oral recollection of problems in the same week. The second aim was to examine the potential therapeutic impact that keeping a diary had on carers' quality of life as rated by the EuroQol, emotional wellbeing as rated by the Hospital Anxiety and Depression scale, as well as its impact on behavioural and psychological problems of dementia patients measured by the Neuro-Psychiatry Inventory. Method Carers were randomly allocated into two groups, the intervention and control groups. In the intervention group, carers received a diary and instructions on how to complete it for 7 days. A number of assessment tools and ratings scales were completed on Day 1 and Day 8. The control group carried out the same tasks except completing a diary. The scales used were questionnaires such as the Clinical Dementia Rating Scale and the Neuro-Psychiatry Inventory for carers to evaluate the problems in the person they cared for. The EuroQol and Hospital Anxiety and Depression scale were completed by carers to assess their own quality of life and screen for anxiety and depression in carers. The carers in the diary group were asked to complete a semi-structured questionnaire on their views about keeping a diary on Day 8 when they returned the diary to the researchers. On Day 28, carers in each group completed the Neuropsychiatry Inventory, EuroQol, Hospital Anxiety and Depression Scale and a semi-structured questionnaire asking about their experiences taking part in the study. Results There was a 1 year period of recruitment from 1 May 2014 to 30 April 2015. A total of 97 couples were identified and approached to take part in the study, with 84 couples agreeing and giving written informed consent to take part. Out of these, 78 couples went on to complete the study and 6 couples withdrew. The problems reported in narratives and diary entries were content analysed by two raters independently and classed into 5 categories: cognitive, behavioural, emotional, psychiatric and other. In retrospective narrative accounts, significantly more cognitive problems were reported than any of the other four problems. In contrast, in diaries both cognitive and behavioural problems were reported significantly more often than the other problems. In addition, in the diary condition, the mean number of problems identified in the carers' diaries was significantly higher than in the carers' narrative accounts on Day 1 and Day 8. Furthermore, the number of problems recorded in diaries did not correlate with retrospective problems reported on Day 1 but correlated with the number of narrative problems on Day 8. In terms of therapeutic benefits of diary keeping, there were no significant differences between diary and control groups' mean scores in the Neuro Psychiatry Inventory, EuroQol and Hospital Anxiety and Depression Scale on Day 8. The mean Neuro-Psychiatry Inventory and Carer Distress scores were significantly lower at the end of the study for both the diary and control groups. Discussion The findings revealed that the carers' diaries identified a greater frequency of problems compared to retrospective information gathered from carers, with cognitive and behaviour problems being the two most common problems. Despite identifying more problems, the use of the carers' diaries in dementia did not appear to make a difference in carers in terms of carer distress, carers' health related quality of life or psychiatric morbidity amongst carers. This may be on account of the short period of one week that the diaries were used in this study. The positive correlation of problems identified in the narratives in diary group at Day 8 with diary entries in contrast to narratives at Day 1 where there were no correlation with diary entries suggest diary entries can enhance recollection of problems in narratives of carers who keep diaries. Conclusions Carers' diaries may be a useful tool in assessments of dementia patients as this study indicates that they may provide more information than obtained from a retrospective account of problems in persons with dementia. More research using diaries in dementia covering longer period than a week may be required to ascertain other benefits such as improving carers' well-being and problems in persons with dementia.
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Johnston, Brian Robert. "Behaviour management knowledge of carers for the aged and carers for the aged with intellectual disibilities [disabilities] /". Title page, table of contents and abstract only, 2004. http://web4.library.adelaide.edu.au/theses/09SPS/09spsj721.pdf.
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Andersson, Stefan. "Information and Communication Technology - mediated support for working carers of older people". Doctoral thesis, Linnéuniversitetet, Institutionen för hälso- och vårdvetenskap (HV), 2017. http://urn.kb.se/resolve?urn=urn:nbn:se:lnu:diva-65220.
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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.
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Thümmler, Kerstin, Irén Horváth e Thomas Fischer. "„Double Duty Carers“ – wenn Pflegekräfte auch privat pflegen: Unterstützungskonzepte für Double Duty Carers im Bereich der privaten Angehörigenpflege". Evangelische Hochschule Dresden, 2021. https://slub.qucosa.de/id/qucosa%3A75566.
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Angehörige von pflegebedürftigen Menschen leisten einen bedeutenden Beitrag zur Gesundheitsversorgung. Sind Angehörige erwerbstätig, dann ist es zusätzlich herausfordernd Beruf, Familie und die private Pflege nahstehender pflegebedürftiger Menschen miteinander zu vereinbaren. Eine besondere Situation entsteht, wenn Angehörige in einem Gesundheitsberuf tätig sind und die Versorgung eines pflegebedürftigen Familienmitgliedes übernehmen. Für diese spezielle Gruppe von pflegenden Angehörigen wird der Begriff der „Double Duty Carer (DDC)“ verwendet. Im Unterschied zu anderen pflegenden Angehörigen schultert diese Personengruppe nicht nur eine Doppelbelastung, sondern nimmt auch eine doppelte („double“) Verpflichtung („duty“) in Sachen Pflege und Versorgung auf sich, da sie privat wie auch beruflich in ähnlichen Aufgabenfeldern der gesundheitlichen Versorgung, Pflege und Begleitung beschäftigt sind.
In diesem Beitrag werden zwei Konzepte für Unterstützungsmaßnahmen für DDC vorgestellt, die den familialen Pflegebereich adressieren: 1. Ein „Workshop zum Umgang mit Erwartungen aus der pflegerischen Doppelrolle“ und 2. ein „Peer-Begleitungskonzepts für Double Duty Carers“. Dabei setzt das entwickelte Peer-Begleitungskonzept stärker auf „Austausch und Begleitung', während bei dem Workshopkonzept eher die Stärkung von „Wissen und Befähigung“ im Vordergrund stehen. Es wird vorgestellt, wie die entsprechenden Unterstützungsmaßnahmen umgesetzt und welche Materialien verwendet werden können.
Die Maßnahmen wurden im Rahmen des BMBF-geförderten Projekts „DDCareD – Double Duty Carers in Deutschland – Verbesserung der Vereinbarkeit von beruflichen und privaten Pflegeaufgaben“ (Förderkennzeichen 13FH002SB6) entwickelt.
Konferenz:
Abschlusstagung des Projekts „Double Duty Carers in Deutschland – Verbesserung der Vereinbarkeit von beruflichen und privaten Pflegeaufgaben“ (DDCareD). Dresden, 13.9.2019:1 Einleitung und Hintergrund ... 4
2 Herleitung der Maßnahmenideen ... 6
3 Workshop zum Umgang mit Erwartungen aus der pflegerischen Doppelrolle ... 6
3.1 Ziele und Ablauf des Workshops ... 8
3.2 Inhalte des Workshops - Beschreibung der einzelnen Module ... 9
4 Peerbegleitung - Eine Unterstützungsmaßnahme für Double Duty Carers ... 14
4.1 Das Konzept der Peerbegleitung ... 14
4.2 Ziele und Ablauf des Peer-Begleitungskonzeptes ... 15
5 Mögliche Einsatzbereiche der vorgestellten Unterstützungsmaßnahmen für Double Duty Carers und Ausblick ... 20
Danksagung ... 21
Literaturverzeichnis ... 22
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Thümmler, Kerstin, Irén Horváth e Thomas Fischer. "„Double Duty Carers“ – wenn Pflegekräfte auch privat pflegen: Unterstützungskonzepte für Double Duty Carers im Bereich der privaten Angehörigenpflege". Evangelische Hochschule Dresden, 2007. https://slub.qucosa.de/id/qucosa%3A75566.
Texto completo da fonteResumo:
Angehörige von pflegebedürftigen Menschen leisten einen bedeutenden Beitrag zur Gesundheitsversorgung. Sind Angehörige erwerbstätig, dann ist es zusätzlich herausfordernd Beruf, Familie und die private Pflege nahstehender pflegebedürftiger Menschen miteinander zu vereinbaren. Eine besondere Situation entsteht, wenn Angehörige in einem Gesundheitsberuf tätig sind und die Versorgung eines pflegebedürftigen Familienmitgliedes übernehmen. Für diese spezielle Gruppe von pflegenden Angehörigen wird der Begriff der „Double Duty Carer (DDC)“ verwendet. Im Unterschied zu anderen pflegenden Angehörigen schultert diese Personengruppe nicht nur eine Doppelbelastung, sondern nimmt auch eine doppelte („double“) Verpflichtung („duty“) in Sachen Pflege und Versorgung auf sich, da sie privat wie auch beruflich in ähnlichen Aufgabenfeldern der gesundheitlichen Versorgung, Pflege und Begleitung beschäftigt sind.
In diesem Beitrag werden zwei Konzepte für Unterstützungsmaßnahmen für DDC vorgestellt, die den familialen Pflegebereich adressieren: 1. Ein „Workshop zum Umgang mit Erwartungen aus der pflegerischen Doppelrolle“ und 2. ein „Peer-Begleitungskonzepts für Double Duty Carers“. Dabei setzt das entwickelte Peer-Begleitungskonzept stärker auf „Austausch und Begleitung', während bei dem Workshopkonzept eher die Stärkung von „Wissen und Befähigung“ im Vordergrund stehen. Es wird vorgestellt, wie die entsprechenden Unterstützungsmaßnahmen umgesetzt und welche Materialien verwendet werden können.
Die Maßnahmen wurden im Rahmen des BMBF-geförderten Projekts „DDCareD – Double Duty Carers in Deutschland – Verbesserung der Vereinbarkeit von beruflichen und privaten Pflegeaufgaben“ (Förderkennzeichen 13FH002SB6) entwickelt.:1 Einleitung und Hintergrund ... 4
2 Herleitung der Maßnahmenideen ... 6
3 Workshop zum Umgang mit Erwartungen aus der pflegerischen Doppelrolle ... 6
3.1 Ziele und Ablauf des Workshops ... 8
3.2 Inhalte des Workshops - Beschreibung der einzelnen Module ... 9
4 Peerbegleitung - Eine Unterstützungsmaßnahme für Double Duty Carers ... 14
4.1 Das Konzept der Peerbegleitung ... 14
4.2 Ziele und Ablauf des Peer-Begleitungskonzeptes ... 15
5 Mögliche Einsatzbereiche der vorgestellten Unterstützungsmaßnahmen für Double Duty Carers und Ausblick ... 20
Danksagung ... 21
Literaturverzeichnis ... 22
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Turnbull, Deborah Anne. "Community Wildlife Care Education by Wildlife Carers". Thesis, Griffith University, 2014. http://hdl.handle.net/10072/366940.
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It has been suggested that the most important role of volunteer wildlife carers in not the rehabilitation and release of native animals, but the incidental public education they provide. The problem for me, a wildlife carer and educator, was the lack of any information about the public or community education role of wildlife carers. The aim of this thesis, therefore, is to describe the community education role of wildlife carers. At a later time, the ultimate goal is to provide adequate carer training in this area.
In order to examine community education by wildlife carers I asked carers what they do that they believe to be environmental community education. Using interpretive inquiry as my guiding methodology, and interview and questionnaire as data collection tools, I invited wildlife carers to share with me their stories of community or environmental education. Twenty-two wildlife carers from across Queensland, Australia told me about their experiences educating the general public about wildlife. The resulting research narrative was cumulative, with various versions of the emerging narrative being offered back to participants and the wider wildlife caring community to ensure I was telling their story truthfully.
I used the stories from my wildlife carer participants and related literature to describe a new construct: community wildlife care education. The emergence of this new construct provides the basis for the distinctive contribution that this thesis makes to community, wildlife and care education. Community wildlife care education has social, temporal and spatial dimensions but it is the social dimension that is dominant. Informal learning encounters between wildlife carers and members of the public are social. Our first experiences of care as humans are social. Care is expanded through the temporal and spatial dimensions, including the development of care for wildlife.Thesis (PhD Doctorate)
Doctor of Philosophy (PhD)
School of Education and Professional Studies
Arts, Education and Law
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Gollins, Tim. "Understanding male carers: masculinity caring and age". Thesis, University of Sheffield, 2007. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.485210.
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Research on carers has shown that, whilst there are often significant differences between men and women in terms of activity and intensity within filial and sibling caring relationships, the respective contributions ofmale and female spousal carers are very similar. Nevertheless, despite feminist considerations of the informal caring that men do, the qualitative experience ofmale carers has not received the same in-depth examination as that offemale carers. This thesis explores the way in which thirty men, identified as carers for their spouse, construct their understanding ofcaring and masculinity. The influence ofageing and retirement in this process are also considered. Fifty-nine qualitative interviews were gathered and analysed using feminist approaches -premised on the co-procluction of knowledge. The theoretical framework of the study prioritised the agency ofindividual male carers, albeit constrained by material realities of an ageing body, and retirement. The thesis offers a new framework for understanding the way men undertake informal caring activities for their spouse and the emotional as well as practical significance ofinformal caring for them. An important aspect ofthe framework is that it describes how men, who begin to care for their spouse informally, often do so without an awareness ofneed and the practical caring skills they require to care holistically: Older men, however, particularly when they have experienced their own health problems, show greater responsiveness to their wife, enabling a more holistic caring relationship to develop. The framework also shows how this transition is influenced by male carers' interaction with health care professionals, support groups, family, and friends. Finally, the study points to potential topics for future research, particularly the relationship between masculinity, ageing and life course. It also confirms the conclusions ofrecent theoretical research on men and masculinity that suggests the importance oflooking at men's everyday practices, and not just focussing on men's hegemonic behaviours, because after all, men do not always behave in hegemonic ways, but men are always gendered.
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Kwong, Yuk-kwan Yvonne. "Psychoeducation on patients and carers of schizophrenia /". View the Table of Contents & Abstract, 2007. http://sunzi.lib.hku.hk/hkuto/record/B38295751.
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Ellis, Graham. "Stroke liaison workers for patients and carers". Thesis, Connect to e-thesis, 2008. http://theses.gla.ac.uk/288/.
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Thesis (MD.) - University of Glasgow, 2007.MD. thesis submitted to the Division of Cardiovascular and Medical Sciences, Faculty of Medicine, University of Glasgow, 2007. Includes bibliographical references. Print version also available.
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Kwong, Yuk-kwan Yvonne, e 鄺玉君. "Psychoeducation on patients and carers of schizophrenia". Thesis, The University of Hong Kong (Pokfulam, Hong Kong), 2007. http://hub.hku.hk/bib/B4501209X.
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Mackay, Elizabeth. "Involvement of family carers in nurses' education". Thesis, University of Brighton, 2007. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.441607.
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Boddy, Kimberley Dawn. "Exploring the self concept of young carers". Thesis, University of Exeter, 2016. http://hdl.handle.net/10871/24214.
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The aim of phase one was to explore the self-concept of young carers and to identify school staff awareness regarding young carers. Eleven young carers (aged 11 to 14) participated in a single session involving a self-concept activity and a demographic questionnaire. The self-concept activity was designed to elicit salient aspects of self in the form of twenty statements. These statements subsequently formed a card sorting exercise to identify which statements were most important to the young carer, and considered positive or negative. Through thematic analysis, salient aspects of self were identified, which included reference to individual traits, interests, competencies, social relationships and family, as well as to helping and the caring role. Statements related to traits and family were found to be most important to young carers. Statements regarding traits and competencies were identified as most positive. 39 school staff respondents completed a questionnaire on defining young carers, internal and external support and perceived effectiveness in supporting young carers. Descriptive statistics were used and analysis was carried out on these data. School staff demonstrated a basic awareness of young carers although some inconsistencies regarding knowledge of the young carer experience still remain. School staff provided detail of internal and external support but felt they could still be more effective in supporting young carers. The findings from young carers and school staff are discussed in relation to relevant literature and strengths and limitations of phase one have been noted. In phase two, five young carers participated in three focus group sessions, seeking to identify valued support. Thematic analysis identified key areas of support that are summarised in an information booklet for school staff. The findings are discussed in the context of relevant literature and strengths and limitations of phase two are identified. An overall discussion situates the research in a wider context, reflecting on future directions for research and implications for educational psychologists.
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Jewitt, Natalie Anne. "Foster carers' experiences of multi-professional working". Thesis, University of Leeds, 2014. http://etheses.whiterose.ac.uk/8059/.
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Introduction: This thesis explores foster carers’ experiences of multi-professional working. Despite previous research exploring multi-professional working from a range of different perspectives, an in-depth exploration of foster carers’ experiences has not been reported. As Looked After Children (LAC) are likely to have poorer outcomes across mental health and education, it is crucial that multi-professional working around LAC is effective to ensure their needs are met across all areas. With 75% of children in care being placed in foster placements a better understanding of the foster carers’ experiences of working within a multi-professional team is vital to improve our understanding of multi-professional working around children in care. Method: Nine foster carers were interviewed using a semi-structured interview method to obtain an in-depth qualitative account of their experiences of multi-professional working. The qualitative data was then transcribed and analysed thematically. Results: Three main themes were derived from the data: complexity of the foster carers’ role; importance of the foster carers’ relationship with social workers; and multi-professional team functioning. The findings showed that foster carers wanted to be included in multi-professional working. Their involvement was crucial as they were identified as the link between the LAC and the multi-professional team. Combining their roles as a parental figure within the family environment, and a professional foster carer within a multi-professional team, brought about an array of challenges, but when this combination was understood, managed and supported it was beneficial for both the multi-professional team and child in care. Foster carers’ relationships with social workers were found to be influential in determining foster carers’ experiences of fostering and multi-professional working. Discussion: The findings highlighted that multi-professional team’s need: clear leadership; clarity around purpose of team / meeting; a clear understanding of each member of the team’s roles and responsibilities; a consistent approach to information sharing; information to be shared with foster carers prior to placement; and more flexibility around communication methods. These findings are discussed in relation to previous research and implications reported. Recommendations for both practice and future research are then outlined.
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Tiltina, Kristine. "Challenges facing long-term foster carers : an exploration of the nature of psychoanalytic parent/carer support". Thesis, University of East London, 2015. http://roar.uel.ac.uk/5178/.
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This research study investigates the role and impact of psychoanalytically-informed short-term parent work with long-term foster carers of looked-after children, in support of the foster placement. The study reflects on the data gathered from four child assessments and five foster families seen by a psychoanalytic child psychotherapist for four sessions each. It draws on psychoanalytic ideas from a range of theoretical traditions, exploring such concepts as trauma, defences, compulsion to repeat, psychological-mindedness, ‘container/contained’ (Bion) and ‘holding environment’ (Winnicott). One distinctive contribution of this research is what it adds to our already existing understanding of the defences (or responses) aroused in the carer when faced with the intense and distressing affect associated with the child’s early trauma; and the impact of this legacy of trauma on the child, on the carer and on the wider Social Services system. Applying Grounded Theory and psychoanalytically-informed clinical case study methodology to the research material, the study breaks down the data analysis into seven stages of coding, from the initial reading of the data to the eventual development of two key hypotheses. One of the predominant themes that emerged from the analysis was the carer’s capacity to remain focused on the child’s emotional needs and how this in turn was linked to the direction of the therapist’s focus. The successive analyses of the data culminated in the hypothesis that the more the therapist focused on the carer and the carer’s emotional states in the course of the parent work, the more the carer was enabled to focus on the child’s emotional needs. As the system of categories emerged according to the themes exemplified in the sessions, a particular focus of analysis became the concept of psychologicalmindedness, considered under several sub-categories: displaying insightful comments; awareness of the child’s bodily states; awareness of the child’s affect; the carer’s ability to recognize the child’s defences; and the carer’s ability to make links between the child’s current difficulties and the child’s past experiences. Through this analysis it became apparent that degree of psychological-mindedness was closely linked to the individual carer’s capacity to metabolize the child’s distressed and distressing communication. This in turn led to a deeper exploration of the situations that were particularly challenging for the carers: i.e., instances when the child was compelled to repeat past traumatic emotional states and as a result was communicating intense distress. This exploration eventually generated the second hypothesis: that in reaction to the child’s distress, the response of each carer could be plotted somewhere along a spectrum, from either distancing themselves from the child’s emotional state to seeking excessive closeness with the child (merging). The next stage of the analysis developed four new categories of carer responses to the distressed child: identification and distancing from the child; identification and merging with the child; the category that describes the carer’s psychologicalmindedness as being ‘impaired’; and ‘good enough’ caring. This then led to an exploration of the carer’s own defences at these most challenging times. This research demonstrates clearly that even within the short space of four sessions of weekly psychoanalytic parent work, it is possible to achieve significant improvement in a carer’s capacity to bear the child’s compulsion to repeat early traumas, and to help the carers become more emotionally available to provide the child with effective psychological parenting at such difficult and challenging times. Key words: looked-after children; long-term foster carers; psychoanalytic short-term parent work; trauma; compulsion to repeat; psychological-mindedness; empathy; defences; psychoanalytically-informed clinical case study research methodology; Grounded Theory research methodology.
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Davies, Catherine. "The psychological wellbeing of carers of people with dementia : what role does knowledge play on carers' perception of dementia?" Thesis, Bangor University, 2008. https://research.bangor.ac.uk/portal/en/theses/the-psychological-wellbeing-of-carers-of-people-with-dementia-what-role-does-knowledge-play-on-carers-perception-of-dementia(c62b4a14-048a-4b83-983e-5e308f0350e5).html.
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The following two papers focus on the psychological wellbeing of carers of people with dementia. The aim of the review paper was to gain an understanding of the barriers that British South Asian carers (BSAC) experience in accessing services. A review of past studies revealed several themes emerging from the literature and these included: limitations in health professionals' culture competence and linguistic abilities, a lack of dementia knowledge by South Asian carers, their perception of dementia and associated stigma. A model is proposed integrating these factors leading to a discussion of the implications of supporting and providing interventions for BSAC. The empirical paper focuses on the relationship between carers' knowledge of dementia, anxiety, preferred coping style (monitoring or blunting information) and competence levels. This questionnaire-based study recruited 51 participants from local health services and voluntary organisations. The results indicated a significant negative association between biomedical knowledge and anxiety, although this should be interpreted with caution due to a low Cronbach's a Coefficient (.54) on the biomedical subscale. A further significant association was found between knowledge and age of carer. Anxiety and competence amongst younger carers was significantly negatively correlated, however there was no association between these two variables in older carers. These findings suggest that the perception and understanding of dementia may have changed over recent years, especially amongst younger carers, with positive implications in terms of carers' psychological wellbeing. Although knowledge about dementia appears to have positive implications in terms of (younger) carers' psychological well-being, when providing support and interventions health professionals should not ignore the emotional aspects of caring for a person with dementia.
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Quigley, Rachel. "Systemic Work of Carers of Community Dwelling Older People with Complex Care Needs: A Qualitative Study of Carers' Experiences". Thesis, Griffith University, 2020. http://hdl.handle.net/10072/393972.
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Informal carers provide the majority of direct care to older Australians and play an essential role in assisting older people with complex care needs to remain living in their own homes. With greater emphasis on the community as a more appropriate site for responding to and managing the needs of older people, carers are increasingly faced with systemic responsibilities, including coordination of fragmented services and providers across multifaceted health and aged care systems and negotiation of treatment and supports. Consequently, this work may be perceived by carers as burdensome.
The aim of this qualitative study was to explore the lived experiences of carers of community-dwelling older adults in undertaking the systemic work of caring. Specifically, the aim was to explore their experiences of managing and coordinating treatment and supports across multiple services and systems. The concept of Burden of Treatment was used to understand the work of navigating, negotiating and managing care of the older person, how carers made sense of this, and what personal resources they drew on.
A descriptive phenomenological approach was taken to guide the research. Semi-structured interviews were conducted with 16 carers of community-dwelling older adults with complex care needs. Giorgi’s phenomenological data analysis methods (1997) was utilised for the data analysis.
Two main themes were derived from the analysis, each comprising three sub-themes. The first theme, Becoming part of the caring system, comprised: (a) Entering the caring system, (b) A sense of obligation and duty, and (c) Work at the nexus of present and future. The second major theme, Mastering the caring system, comprised: (a) Making connections, (b) Activating the management plan, and (c) Voicing and advocating needs in the caring system.
Participants felt a sense of expectation and responsibility from others, including family and health and aged care providers to take on the caring work. Many perceived they had no alternative but to respond to systemic demands when seeking to manage the needs of the older person and described the challenge of this work as managing multiple and complex organisational and administrative processes across different systems while locating, accessing and coordinating services for the older person. The findings showed an experience of being adrift and having to piece together disjointed pathways. Participants also described the work of trying to make systems more responsive to the older person for a better outcome. Furthermore, the findings illustrated the varied skills required to master the systemic work, including administrative, communication, advocacy, problem-solving and negotiation abilities. Some carers drew on personal resources, robustness and abilities while others often felt overwhelmed and unsure of how to proceed.
The findings indicate that through addressing the systemic work placed on carers, the burden placed on them can be alleviated. From a system perspective, streamlining and reducing duplication of assessments, improving information access, improving communication and targeting partnerships between differing organisations can reduce system complexity which in turn will reduce the demands made on carers. Consideration of models of system navigation, care co-ordination, and case management would support those who struggle to independently master the system. The findings also suggest that there is scope for health care professionals and service providers to better identify carer requirements and assess carer capacity to manage the work. Without investment to assist carers to do the increasingly complex work, there is a risk of disparity between those that are equipped to access services and supports and those that will that continue to flounder and forego appropriate care for the older person and support for themselves.Thesis (Masters)
Master of Philosophy (MPhil)
School of Human Serv & Soc Wrk
Griffith Health
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Heal, Harriet C. "The diagnosis of dementia - do we tell the sufferer, and why?" Thesis, University of East Anglia, 1996. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.320836.
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Upton, Norman. "Caregiver coping in dementing illness". Thesis, Anglia Ruskin University, 2001. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.369151.
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Carradice, Angela. "A qualitative study of the theoretical models used by mental health nurses to guide their assessments with family caregivers for people with dementia". Thesis, University of Sheffield, 1999. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.365112.
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Brooks, Alice. "A narrative enquiry of experienced family carers of people with dementia volunteering in a carer supporter programme". Thesis, Royal Holloway, University of London, 2011. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.588521.
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Peer support involves matching people in need of support with volunteers who have been in a similar situation. Whilst motivations and positive and negative aspects of general volunteering have been noted in the literature, little is known about the impact of providing peer support in the context of personal experiences of caring for someone with dementia. The aim of this study was to use rich, detailed case studies to build narratives of the impact of being a carer supporter. Participants were experienced carers of a person with dementia (either current or former), matched in a programme with newer dementia carers for a ten month period. The aim of the programme was to improve a sense of self-efficacy and competence in the newer carer through encouragement and positive reinforcement of carer skills development and carer network building activities. Eight carer supporters from two London Boroughs took part m semi-structured interviews. These were subject to a narrative analysis, focusing on structural components of the narratives, themes, and the influence of the wider socio-cultural context.
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Joubert, Janetta Debora. "A profile of informal carers in South Africa". Diss., Pretoria : [s.n.], 2005. http://upetd.up.ac.za/thesis/available/etd-12022005-140227.
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Minnis, Helen Jennifer. "Evaluation of a training programme for foster carers". Thesis, King's College London (University of London), 1999. https://kclpure.kcl.ac.uk/portal/en/theses/evaluation-of-a-training-programme-for-foster-carers(5d8bf051-9b80-4629-ab00-3487b12830a2).html.
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Mellows, K. L. "Employed carers' empathy towards people with learning disabilities". Thesis, Canterbury Christ Church University, 2012. http://create.canterbury.ac.uk/11170/.
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Section A presents the hypothesis that attachment representations determine individuals’ capacities for empathy, which is necessary for sensitive and responsive caregiving. It reviews the evidence pertaining to whether this hypothesis applies within the context of employed caregivers caring for adults with learning disabilities. The evidence is considered in a stepwise fashion, based on four literature searches. The paper concludes by considering the implications of this literature for clinical practice and future research. Section B is an empirical research paper which describes the development of a new questionnaire aiming to measure employed carers’ empathy towards people with learning disabilities. It describes how investigation of the questionnaire’s factor structure illuminated the salient processes that may influence empathy in this specific relational context. It presents evidence of the questionnaire’s construct validity, internal reliability and test-retest reliability. The results are linked to existing literature and recommendations for clinical practice are made. Limitations of the study and directions for future research are considered.
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Ablitt, Astri Julie. "Relationships between people with dementia and their carers". Thesis, University of Warwick, 2008. http://wrap.warwick.ac.uk/4111/.
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This thesis consists of three papers, a literature review, an empirical paper and a reflective paper. The literature review covers two distinct but interlinked areas of research: the impact of dementia on the quality of relationships, and the impact of relationship quality on the experience of living with dementia. The literature review clarifies the interactions between these factors by using a model to demonstrate the influence of relationship factors on the experience of living with dementia. Methodological issues and suggestions for future research are discussed, and the findings are summarized with particular reference to clinical implications. The empirical paper reports on a study of the awareness of carer distress in people with dementia. Ratings of carer psychological health were elicited from people with dementia and from the carers themselves as a pair. Comparison of the ratings showed that people with dementia are aware of their carers' psychological health. A control group of people with arthritis also participated in the study. The level of awareness shown by the participants with dementia was comparable to the level of awareness of carer psychological health shown by the control group. The level of awareness of carer psychological health in the participants with dementia was not related to their level of awareness of their own memory difficulties. The thesis concludes with a reflective paper which focuses on observations made whilst conducting research interviews and recruiting participants through support groups. Reflections and learning drawn from these observations are discussed.
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Pyman, Michelle. "Short-term fostering of infants : foster carers' experiences". Thesis, University of East Anglia, 2007. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.443190.
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This qualitative study is an exploratory investigation of the experiences of thirtyfive female foster carers who foster infants short-term. In-depth interviews were conducted, transcribed and analysed in order to gain an understanding of the way foster carers manage this specific fostering task. The primary focus of the interviews was carers' motivations to foster infants, their role perceptions, the relationships they have with the infants and their experiences of placement endings. Carers' approaches to coping along with their ideas about what can be helpful to them at these times were also explored. A grounded theory approach towards the data analysis was used. The key messages from the data about carers' experiences were drawn together to form a model of short-term fostering of infants. The data suggests that along with the task of mothering, foster carers face a number of additional tasks when caring for foster infants. Some carers find it easier to manage these additional issues than others. A model of fostering infants short-term was developed which suggested that outcomes can be understood in terms of the carers' ability to manage and balance these additional tasks that fostering presents. The analysis is developed further by identifying the processes involved in whether this balance is achieved or not. Fostering infants is a personal task as infants require mothering, and yet it is conducted within a public and professional arena. This study concludes that fostering infants is a complex and challenging task. Managing and balancing the professional and personal demands of the fostering task is central to a successful, satisfying fostering experience for the foster carer. This thesis argues that the findings presented provide material that could inform areas of social work practice such as the way in which placements are planned. The findings also highlight the importance of providing appropriate support to ensure that foster carers are able to offer these vulnerable infants a secure base and manage their formal role in the child's life, whilst also maintaining a sense of personal satisfaction from fostering.
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Hutchinson, Sarah J. "Informal carers' attitudes to pensions and retirement savings". Thesis, University of Oxford, 2012. http://ora.ox.ac.uk/objects/uuid:0c41358b-3c83-4f65-9ce6-53f7cc5f370e.
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Concerns about population ageing have been central to reforms of pensions policy and social care policy in the UK over recent decades. However, policy responses to these social problems are in tension, as individuals have been expected to take greater responsibility for both pension saving and provision of care, even when care involves a reduction in earnings and savings. While the pension system protects carers’ state pensions, little attention has been paid to their non-state pensions. This thesis therefore explores the attitudes and beliefs carers hold regarding pensions, and the effect of caring on pensions planning, particularly planning a non-state pension. It focuses on the assumptions made about agency and decision-making contained within social policy. Semi-structured interviews were held with those aged 35-64 who were providing 20 hours of care or more a week in the Thames Valley and Greater London. Almost all of the carers reported disruption to their private pension savings as their employment was impacted by caring. Few felt able to make a choice regarding either caring or employment. Caring also affected the importance many attached to saving, although there was no uniform effect on decision-making. Some carers became more reflexive, attempting to take more control in response to the uncertainty in their lives; others felt powerless due to this uncertainty and limited financial resources. The study provided support for the theory of an ethic of care, which suggests individuals make decisions based on relationships rather than calculations of expected outcomes. The findings challenge the assumptions made in pensions policy. Carers were classed in four categories of approach to pensions savings: reflexive planners, non-reflexive planners, reflexive non-planners and non-reflexive non-planners. A range of financial and social resources corresponding to Bourdieu’s habitus and economic and cultural capital was required for carers to act as reflexive planners.
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Jacobi, N. "The carers' perspective : loving someone with health issues". Thesis, City, University of London, 2015. http://openaccess.city.ac.uk/16403/.
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Objective: To evaluate the effectiveness of a carer training programme delivered alongside Cognitive Stimulation Therapy (CST). Design and Subjects: The project used a mixed methodology design. It comprised a single blind, randomised control trial and a thematic analysis of focus group interviews exploring the impact the training had on the carer experience. Sixty-eight people with dementia and their carers were recruited as participant dyads and randomised into one of three conditions; CST plus carer training, CST only or a wait-list control. Carers were administered four questionnaires addressing caregiver burden, self-efficacy, general well-being and carer/patient relationship at baseline and 15 weeks follow up. Focus group interviews were undertaken with eighteen carers who completed the carer training programme alongside their family member with dementia attending a CST group programme. Setting: Participants were recruited from South Essex Partnership Trust across Bedfordshire, UK. Results: From the quantitative results only one significant result, from the ANCOVA analysis, was found, this was in the quality of the relationship: F(1, 44) =12.159, p = .001 (ƞp2 =.225). The qualitative thematic analysis illustrated a change in carer perception as a result of the training. The participants described an opening position named Pessimism, which included isolation, stigma, lack of support, carer burden, depression and loss. Through adopting strategies shared in the training programme they moved to a position named Mastery with improved understanding, control and self-efficacy leading to hope. This resulted in a third theme named Welfare which reflected improved relationships, interaction and well-being and an ability to facilitate respite. Conclusions: For carers of people with dementia, in addition to traditional education about dementia, carer training should also consider communication strategies, person-centred interactions and interpretation skills of behavioural and psychological symptoms of dementia. This research found these to be beneficial in enhancing the informal carers’ caring experience, resulting in improved relationships. Undertaking specific stimulating activities was more successful when introduced in an organic naturalistic way.
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Ellis, Nicola. "Factors contributing to resilience in parents and carers". Thesis, University of Liverpool, 2015. http://livrepository.liverpool.ac.uk/2033739/.
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With increasing demand on the role of being a foster carer, it can be difficult to maintain a stable placement for the child in care. Resilience is a crucial factor in individuals successfully overcoming challenges and adversity, something that is ever present for foster carers. The aim of this qualitative study was to explore what factors enable and maintain resilience in foster carers, in addition to considering the challenges they face. Fourteen foster carers (2 male and 12 female) who had maintained a long term placement (for a year or more) with a looked after child, were recruited from a Local Authority in the North West of England. Foster carers were interviewed and their verbatim transcripts were analysed using a grounded theory methodology. A theoretical framework, including enabling, maintaining and resilience challenging factors, were found to emerge from the data and identified as likely in demonstrating foster carers' resilience and influencing placement stability. This theoretical framework provides an insight into clinical implications such as ensuring that foster carers receive the appropriate support when they are faced with increasing challenges, in order to maintain a stable placement.
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Tomlinson, E. J. "Former carers' views on assisted dying in dementia". Thesis, University College London (University of London), 2013. http://discovery.ucl.ac.uk/1407695/.
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Overview This volume is in three sections. Part 1: The literature review examines the available research into the views of the general public, health professionals, people with dementia and carers towards assisted dying in cases of dementia. It considers the evidence for factors associated with people’s views. Seventeen studies of variable quality met the criteria for the review. Health professionals appear to hold the most restrictive views on assisted dying; however opinions within each population group are divided and associated with factors such as age, ethnicity, gender and religion. The methodological limitations of the reviewed studies are discussed and recommendations are made for further research. Part 2: The empirical paper reports on an exploratory qualitative study of former carers’ views on assisted dying in cases of dementia. Semi-structured interviews were conducted with 16 former carers; transcripts were analysed thematically. Whilst support for the right to die with dementia was common, the complexity of assisted dying in cases of dementia was also acknowledged. The motivating factors for and against an assisted death are revealed and former carers’ views about talking with a health professional if contemplating an assisted death are described. Part 3: The critical appraisal is a reflection on the process of designing and executing the research presented in Part 2. It discusses some of the methodological issues which arose during the study before finally attending to the influence of the research on the researcher, which reference to personal reflexivity.
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Shlosberg, Emma. "Dementia : the burden of care on the carers". Thesis, Bangor University, 1998. https://research.bangor.ac.uk/portal/en/theses/dementia--the-burden-of-care-on-the-carers(3829ec44-fee0-4540-b783-6c78a327c567).html.
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Murfield, Jennifer E. "Self-Compassion and Family Carers of Older Adults". Thesis, Griffith University, 2022. http://hdl.handle.net/10072/413982.
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Background: Providing care to an older family member can negatively impact the psychological health and wellbeing of the carer. Interventions that cultivate self-compassion have demonstrated efficacy in supporting psychological health and wellbeing among various populations. However, there is limited research into self-compassion with family carers of older adults, and there are no interventions that target self-compassion for this group specifically. Aim and Objectives: This PhD study aimed to plan and design a self-compassion intervention for family carers of older adults. It had three objectives: identify and review evidence to determine current knowledge about family carers of older adults and self-compassion; identify and develop an evidence-based theory of the likely or anticipated process of change in a self-compassion intervention for family carers of older adults; and identify the key design objectives and key features of the self-compassion intervention for use with family carers of older adults.
Design and Assumptions: The PhD study was underpinned by pragmatism and used evidence-based, theory-based, person-based, and co-design approaches to intervention development. It had a sequential mixed model design that was structured into three stages: Stage I – reviewing the evidence-base; Stage II – identifying and developing theory; and Stage III – qualitative research and co-design. Stage I Methods and Findings: Stage I encompassed two reviews: an integrative review of self-compassion and health outcomes for family carers of older adults; and a scoping review of mindfulness- and compassion-based interventions with family carers of older adults. The reviews confirmed compassion and mindfulness for family carers of older adults as developing areas of interest. For self-compassion in particular, the reviews also found that studies conducted to date were limited in number, scope, and quality. Stage II Methods and Findings: Stage II involved a conceptual analysis and a cross-sectional survey. The conceptual analysis outlined a theoretical rationale for self-compassion as an intervention target for family carers of older adults and explored the potential mechanism of change. This rationale was tested and confirmed in an international cross-sectional survey of family carers of older adults. The survey included self-report measures of compassion for self, to others, from others; mindfulness; depression, anxiety, stress; coping strategies; and emotion regulation difficulties; and eight free-text comment boxes. Confirmatory factor analyses (n = 171) established the validity of the Compassionate Engagement and Action Scales with the study population. Path analysis (n = 139) found increased self-compassion and dispositional mindfulness was significantly associated with lower psychological distress (R2 = .65), and this was mediated by reduced emotion regulation difficulties (R2 = .52). Qualitative content analysis (n = 105 participants, 245 comments) identified that: family carers perceived a lack of compassion for themselves and from others; there were several barriers to carers’ openness to receiving compassion; and advanced needs of the care recipient negatively influenced carers’ compassion. Stage III Methods and Findings: Stage III included qualitative interviews and co-design activities. Interviews exploring perceptions and contextual issues relevant to the intervention’s development were conducted with 14 family carers of people living with dementia (Australia) and 14 professional stakeholders (Australia and UK). Reflexive thematic analysis identified that the intervention should target family carers of people living with dementia specifically; be situated within the concept of compassion more broadly; address misperceptions, fears, blocks, and resistances to self-compassion; and target feelings of shame, guilt, and self-criticism. Intervention guiding principles, psychological theory, and a co-design group (n = 6 Australian-based family carers of people living with dementia) further informed the intervention’s design. Collectively, this process determined that the needs of family carers of people living with dementia were best met by tailoring an existing intervention: group-based Compassion-Focused Therapy. Conclusions: Using a systematic and comprehensive approach to planning and designing an intervention, this PhD study established the current state of knowledge within the field; proposed, tested, and confirmed a conceptual model about the role of compassion and its mechanism of change in the psychological health of family carers of older adults; and validated a measure of compassion with the study population. Based on the needs, preferences, and co-design input of intended intervention users, the PhD study also defined the key design objectives and key features of the self-compassion intervention. Overall, group-based Compassion-Focused Therapy for family carers of people living with dementia was identified as an optimum intervention.Thesis (PhD Doctorate)
Doctor of Philosophy (PhD)
School of Nursing & Midwifery
Griffith Health
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Mutepfa, Magen Luce Musanetseke. "Resilience of grandparent carers fostering orphans in Zimbabwe". Thesis, The University of Sydney, 2015. http://hdl.handle.net/2123/13753.
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In sub-Saharan Africa, grandparents are primary providers of care to orphaned children from HIV. This study sought to explore resilience profiles of grandparents fostering orphans and the impact of resources on the grandparents’ health and well-being. Participants were 327 grandparents looking after their grandchildren (mean age=62.4; s.d=11.2). Data were collected from grandparents residing in rural areas, urban low and high density suburbs of Zimbabwe. Mixed methods approaches (quantitative and qualitative) were used to gather data and systematic sampling was used to select grandparents’ carers. Data were analysed using hierarchical regression and thematic analysis. Nvivo 10 was used to classify qualitative data into themes. Hierarchical regression controlling for age, education, marital status, income earned, residential area, and whether child fostered was orphan or non-orphan was used to identify protective factors associated with resilience, health and wellbeing to establish grandparents’ ability to cope with caregiving. Preliminary findings suggest that grandparents’ resilience profiles differ by social class, age, social assets, environmental and personal assets. Protective factors were found to play a vital role in resilience, health and wellbeing (a strength based perspective), hence caregiving. The resilience scores, health scores and low wellbeing scores highlight the need for assistance to grandparents to enable them to cope adequately with carer roles. Policy makers should formulate viable policies that address elderly caregivers’ challenges and stakeholders should implement appropriate intervention.
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Joseph, Pamela Gillian. "Parent-carers' perspectives on their relationships with complex service systems". Thesis, The University of Sydney, 2017. http://hdl.handle.net/2123/18672.
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Parents of children with high-level support needs, including adult children, commonly interact with service providers across health, disability, education and other systems. In a policy environment that emphasises individual autonomy and the marketisation of service provision, however, parents’ relationships with such systems remain unclear. This qualitative study explored the ways that parents construct their relationships with providers, and their views about their own identities within and outside the formal service systems with which they interact. A theoretical framework of social constructionism, complexity theory, and critical postmodern feminism informed the study design and the interpretation of data. Twenty-seven parents, from metropolitan and non-metropolitan areas across five Australian states, participated in semi-structured in-depth interviews and created concept maps to describe their service system relationships. The data were analysed using a thematic network analysis (Attride-Stirling, 2001), from which three key themes emerged. A theme of “boundaries” captured the ways that parents defined their own identities, and those of providers. “Transition” highlighted times of change as particular occasions of challenge and opportunity in the negotiation of parent identities and relationships. The third theme, “enacting power through control and resistance” reflected parents’ understanding of the role of power in their relationships with providers. The findings suggest that a life-course approach contributes to a better understanding of the unique, complex and dynamic relationships between parents and service providers than current service models that reflect the developmental stages of childhood, adolescence and adulthood. The global theme of “individual (re)negotiation” sheds light on parents’ constructions of identity and their active participation towards more equitable relationships with providers. The findings of the study have implications for more inclusive, co-relational practices. The thesis discusses the findings’ significance for policy, practice, education and future research.