Relevant bibliographies by topics / Carers

Academic literature on the topic 'Carers'

Author: Grafiati
Published: 4 June 2021
Last updated: 21 February 2023

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  1. Journal articles
  2. Dissertations / Theses
  3. Books
  4. Book chapters
  5. Conference papers
  6. Reports

Journal articles on the topic "Carers":

1

Mitchell, Eileen. "Managing Carer Stress: An Evaluation of a Stress Management Programme for Carers of People with Dementia." British Journal of Occupational Therapy 63, no. 4 (April 2000): 179–84. http://dx.doi.org/10.1177/030802260006300407.

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This article examines the effect of carer stress management using the Carers' Checklist (Hodgson et al 1998) as a measure of outcome. Pre-course and post-course questionnaires were used with carers, identified by health and social services professionals, who agreed to attend a structured stress management course. Seven out of the 10 identified carers, who resided in the West Dorset area, participated. Only one carer's wife was a resident in a nursing home; the others were caring actively at home. The main measures of outcome were the burden of care, including social, financial and physical demands in terms of the carers' own experience, and their level of understanding of stress management techniques. The carers who attended demonstrated a better awareness and understanding of stress and its management following the course. Positive measures of outcome were also determined by a decrease in the carers' rating in frequency of dementia-related problems, carer burden of dementia-related problems and overall carer burden. The findings confirm that structured stress management can reduce carer burden and offer better coping strategies through raising carers' awareness and understanding.
2

Julieta, Camino, Khondoker Mizanur, Kishita Naoko, and Mioshi Eneida. "537 - Reported and observed task performance in dementia and the role of the carer management style." International Psychogeriatrics 33, S1 (October 2021): 81. http://dx.doi.org/10.1017/s1041610221002325.

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Background:Consistency between carers’ report of the people with dementia’s (PwD) performance of activities of daily living (ADLs) and observed performance has been an important topic in the literature, but most studies have investigated whether carer’s burden and depression affect this report.Objectives:To (1) investigate if carer’s report of PwD’s performance of ADLs is consistent with PwD’s observed performance; and to (2) evaluate if carer management style has an effect on this discrepancy.Methods:Sixty-four PwD completed a performance-based ADL assessment (Assessment of Motor and Process Skills-AMPS) which entails the observation of ADL performance; their carers were interviewed using an informant-based ADL assessment (DAD), which records ADL performance as reported by the carer. Carers completed a dementia management-style scale (DMSS) that categorises the carer’s style in: criticism, active-management and encouragement. To investigate whether there was consistency between the DAD and the AMPS, a new continuous variable was created: the comparative ADL score. Cohen’s kappa was used to compare agreement/disagreement between the DAD and the AMPS. Multiple regression analysis explored whether carer styles could explain the discrepancy between the reported and observed performance of ADLs.Results:The majority of carers underestimated (71.9%) or overestimated (17.2%) (disagreement) the PwD’s ADL performance; only 10.9% of carers reached an agreement between reported and observed performance. Cohen’s kappa [k= -0.025 (95%CI -0.123 – 0.073)] indicated poor level of agreement between the DAD and the AMPS. Criticism, active-management and encouragement styles were included in the regression model: the comparative ADL score was used as the dependent variable. This combined model explained 18% (R2=0.178,F(3, 59)=4.26,p=<0.01) of the variance of the dependent variable. Active-management (β =0.037, t(62)=3.554, p=0.001) and encouragement (β =-0.024, t(62)=- 2.086, p=0.05) styles were the two factors that made the largest and statistically significant contribution to the model.Conclusions:the disagreement between the reported and the observed performance proved to be high in this group. The styles that carers use when dealing with dementia-related problems affected their report of ADL performance, which means that the strategies applied by carers to support ADL performance can be targeted to reduce the gap between reported and observed performance.
3

Fitzgerald, Leslie R., Michael Bauer, Susan H. Koch, and Susan J. King. "Hospital discharge: recommendations for performance improvement for family carers of people with dementia." Australian Health Review 35, no. 3 (2011): 364. http://dx.doi.org/10.1071/ah09811.

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Background. It is acknowledge that discharge planning benefits both consumers and hospitals. What is not widely understood is the experience that the family carer of a person with a dementia has and whether the hospitals meet their in-hospital and post-hospital needs. Objective. To explore whether metropolitan and rural hospital discharge practices meet the needs of the family carer of a person with dementia. Results. Although this and other research indicates that a continuum of care model is beneficial to family caregivers, no evidence has been identified that family carers currently experience this type of quality planning. Family carers were often unaware of the existence of a hospital discharge plan and were rarely engaged in communication about the care of their family member with a dementia or prepared for discharge. Conclusion and recommendations. Discharge planning processes for family carers of people with dementia could be substantially improved. It is recommended that hospitals develop policy, process and procedures that take into account the family carer’s needs, develop key performance indicators and adopt best practice standards that direct discharge planning activities and early engagement of the family carer in healthcare decisions. It is recommended that health professionals be educated on communication, consultation and needs of family carers. What is known about the topic? The literature shows discharge planning can increase in patient and caregiver satisfaction, reduce post-discharge anxiety, reduce unplanned readmissions and reduce post-discharge complications and mortality. To be effective, discharge planning requires interdisciplinary collaboration; yet for people with a dementia there are insufficient system processes to support discharge planning, routine breakdowns in communication between patient, family caregivers and health professionals and inadequate admission and aftercare plans. There is little known about the discharge planning as it effects the family carer’s of people with dementia. What does this paper add? This research provides evidence of the family carer’s experience of metropolitan and rural hospital discharge as it relates to planning, preparation and support. It investigates how well the discharge planning process met the needs of the family carer and what improvements are required if hospital discharge planning is to be more effective. The research identifies a range of initiatives that hospital and health professionals can implement to improve current discharge practices for family carers of people with dementia. What are the implications for practitioners? This report makes recommendations for changes to hospital health systems and the discharge practices of health professionals. Hospitals need to develop policy, process and procedure that take into account family carer’s needs, develop key performance indicators that measure discharge planning practices, and adopt best practice activities that include such items as early engagement of the primary carer’s, the identification of a liaison health professional and implementation of a policy that requires family carers to be involved in and notified of an impending discharge. It is recommended that health professionals be educated on the needs of family carers as it relates to communication and consultation. The primary carer is involved in discussions and decisions about in-hospital and post-hospital treatment regimes and is in agreement with, and competent in, post-discharge treatments, therapies and support services.
4

Berk, Lesley, and Michael Berk. "Who cares about carers?" Australian & New Zealand Journal of Psychiatry 49, no. 10 (September 7, 2015): 936–37. http://dx.doi.org/10.1177/0004867415605621.

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5

Pring, Tim. "Who cares for carers?" Aphasiology 13, no. 12 (December 1999): 914–17. http://dx.doi.org/10.1080/026870399401687.

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6

van Haeften-van Dijk, A. Marijke, Franka J. M. Meiland, Bart J. J. Hattink, Ton J. E. M. Bakker, and Rose-Marie Dröes. "Community day care with carer support versus usual nursing home-based day care: effects on needs, behavior, mood, and quality of life of people with dementia." International Psychogeriatrics 28, no. 4 (December 7, 2015): 631–45. http://dx.doi.org/10.1017/s1041610215001921.

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ABSTRACTBackground:Several studies have shown that the combined community-based Meeting Centres Support Programme (MCSP) for people with mild to moderate dementia and their carers were more effective in reducing behavior and mood problems of people with dementia than traditional nursing home-based (NH) day care. We therefore investigated in this study whether community-based (CO) psychogeriatric day care for people with mild to severe dementia combined with carer support (in accordance with the MCSP), is more effective than regular NH day care.Methods:A pre-test–post-test control group design was used to compare the effect of CO and NH day care on care needs, behavior and mood problems, and quality of life of people with dementia. 138 dyads of people with mild to severe dementia and family carers participated in the study: 70 from (new and longer existing) CO day cares (experimental group), and 68 from NH day cares (control group). ANCOVAs were performed at post-tests, including baseline data as covariates.Results:After six months, no overall differences on outcome measures were found between CO and NH day cares. However, participants of recently started CO day cares showed fewer neuropsychiatric symptoms, whereas carers in the longer existing CO day cares reported fewer care needs compared to the control group (large effects). Persons with dementia cohabiting with their carer benefitted most from CO day care.Conclusions:This study shows that combined CO day care has promising added value compared to NH day care, especially for participants with dementia cohabiting with their carer.
7

McConachy, Diana, and Karalyn McDonald. "Issues for Primary, Informal, Home-based Carers of People Living with AIDS." Australian Journal of Primary Health 5, no. 1 (1999): 30. http://dx.doi.org/10.1071/py99004.

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Central to the Australian national strategic response to HIV/AIDS is the need for training and support for volunteer carers of people with HIV/AIDS. However, the role of primary, informal, home-based carers of people with AIDS (PWA) is not clearly defined and the research about carers undertaken in Australia has not specifically looked at this group. The aim of the study described was to examine the experiences of primary, home-based carers of people with AIDS in order to inform policy and program development. Data were collected from 47 carers in New South Wales and Victoria between August and November, 1996. A short self-administered questionnaire collecting demographic information was followed by a longer questionnaire with mostly closed questions on preparation for caregiving, caregiving tasks, symptom management, service use, coping strategies, and impact of caregiving. Open-ended questions were about the provision of emotional support by the carer to the PWA, the carer's health and positive aspects of caregiving. Two key findings emerge from the content and thematic analyses. The first relates to the study respondents, who differ from the national profile of informal carers in two areas, gender and age. The second relates to the diverse nature of the caregiving experience, including the vast array of symptoms and diseases that an AIDS diagnosis can entail, the complexity of the relationship between the carer and care recipient and the experience of multiple caregiving. These findings highlight the difficulty in identifying simple, singular strategies for carer support and information.
8

Graham, Candida R., Sube Banerjee, and Randeep S. Gill. "Using postal questionnaires to identify carer depression prior to initial patient contact." Psychiatric Bulletin 33, no. 5 (May 2009): 169–71. http://dx.doi.org/10.1192/pb.bp.108.020982.

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Aims and MethodTo assess whether postal questionnaires, used as a local initiative, were useful in identifying carer depression allowing early support for community-dwelling carers of older adults with mental health needs. the Geriatric Depression Scale and a questionnaire collecting information on the carer's circumstances were sent to carers of consecutive patients routinely referred to a community mental health team for older adults in south London. Rates of carer depression between postal questionnaire responders and non-responders were compared.ResultsThe response rate to the postal questionnaires (33%) was similar to that observed in other postal studies; 42% of responders had depression compared with only 4.6% of non-responders.Clinical ImplicationsPre-contact postal questionnaires may present a simple method of enhancing early detection of carer depression for minimal economic outlay.
9

Ewing, Gail, and Gunn Grande. "51 How do family carers feature in end of life care policy? scoping review and narrative summary of uk national policy/guidelines on implementing carer assessment and support." BMJ Supportive & Palliative Care 8, no. 3 (September 2018): 379.1–379. http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.51.

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BackgroundThe ethos of end-of-life-care (EOLC) embraces both carers and patients. For over a decade UK healthcare policy has acknowledged that carers’ needs should be assessed and addressed in EOLC.AimTo review national policy/guidelines on carers and EOLC examine how policy addresses carer assessment/support and its implementation in practice.MethodsScoping review through searches of public body websites (e.g., Department of Health and NICE); provider organisations (e.g., National Council for Palliative Care Hospice UK) and charities (e.g., Carers UK Carers Trust) personal sources (researcher libraries personal contacts serendipitous discovery) ‘snowballing’ and reference checking. Included: publications 2004–2018 national guidance on EOLC delivery or adult carers. Excluded: policy/guidance on children. Policy content mapped to areas key of practice implementation for carers at individual and organisation levels.ResultsContent mapping identified EOLC practice implementation issues for patients rarely for carers. Conversely generic carer strategy/guidance focused on carers with little reference to EOLC. Key findings were:Move from a distinct carer focus (their assessment/support) in early guidance to a joint patient/carer approach with corresponding loss of recognition of carers’ separate situationLimiting carer assessment to statutory social–care assessments which do not address need for healthcare supportLack of detail on structures and processes required for organisational implementation of carer assessment and support.Policy guidance lacks a focus on carers a comprehensive health and social care approach and detail on processes and structures required for implementation of carer assessment and support in practice that hinders improvement of carer support.FunderHospice UK and NIHR CLARHC Greater Manchester
10

de Andrés-Jiménez, Elena, Rosa Mª Limiñana-Gras, and Encarna Fernández-Ros. "Personality and Dementia: an Approach to Differential Profile of the Caregiver." European Journal of Investigation in Health, Psychology and Education 1, no. 3 (September 22, 2011): 85–94. http://dx.doi.org/10.1989/ejihpe.v1i3.7.

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The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.
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Journal articles Dissertations / Theses Books

Dissertations / Theses on the topic "Carers":

1

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.
2

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.
5

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.

7

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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Books on the topic "Carers":

1

Barber, Paul. Who cares for the carers? London: Distance Learning Centre, South Bank University, 1993.

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Council, Haringey. Carers' handbook. London: Haringey Council, 1996.

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Alcock, Jean. Caring for carers: Better library services for carers. (Glasgow): Community Services Group Scotland, 1996.

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Neary, Ged. Carers in the city: New writing, from carers. Manchester: Manchester Carers Centre, 2008.

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5

McNally & co. [from old catalog] Rand. Caring about carers: A national strategy for carers. [London?]: H.M. Government, 1999.

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Perth & Kinross Association of Voluntary Service. Carers resource manual. Perth: PKAVS, 1999.

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Northern Ireland. Department of Health, Social Services and Public Safety. Informal carers report. Belfast: DHSSPS, 2001.

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Heron, Christine. Working with carers. London: Jessica Kingsley Publishers, 1998.

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Crompton, Simon, ed. The Carers Guide. London: Palgrave Macmillan UK, 1994. http://dx.doi.org/10.1007/978-1-349-13869-2.

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Sutcliffe, David. Working alongside carers. Eastbourne: David Sutcliffe, 1990.

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Book chapters on the topic "Carers":

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Benz, Cynthia, and Debra Chand. "Carers." In End of Life Care in Neurological Disease, 161–86. London: Springer London, 2012. http://dx.doi.org/10.1007/978-0-85729-682-5_9.

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Eckersley, Anna. "Carers." In Women, 35–37. London: Macmillan Education UK, 1992. http://dx.doi.org/10.1007/978-1-349-12402-2_6.

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Dimond, Bridgit. "Carers." In Legal aspects of care in the community, 318–30. London: Macmillan Education UK, 1997. http://dx.doi.org/10.1007/978-1-349-25161-2_22.

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Glasby, Jon, and Helen Dickinson. "Carers." In A–Z of Inter-Agency Working, 13–16. London: Macmillan Education UK, 2014. http://dx.doi.org/10.1007/978-1-137-00533-5_6.

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Williams, John, Gwyneth Roberts, and Aled Griffiths. "Carers." In Adult Social Care Law in England, 96–111. London: Macmillan Education UK, 2014. http://dx.doi.org/10.1007/978-1-137-44356-4_5.

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Barnes, Marian. "Carers and the Carers’ Movement." In Caring and Social Justice, 126–41. London: Macmillan Education UK, 2006. http://dx.doi.org/10.1007/978-1-137-05193-6_7.

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Swanson, Robert. "Pastoral care, pastoral cares, pastoral carers." In Pastoral Care in Medieval England, 123–41. 1 [edition]. | New York : Routledge, 2019.: Routledge, 2019. http://dx.doi.org/10.4324/9781315599649-7.

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Larkin, Mary. "Former Carers." In Encyclopedia of Gerontology and Population Aging, 1–5. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-319-69892-2_18-1.

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Booth, Sara, Julie Burkin, Catherine Moffat, and Anna Spathis. "Supporting Carers." In Managing Breathlessness in Clinical Practice, 173–86. London: Springer London, 2013. http://dx.doi.org/10.1007/978-1-4471-4754-1_9.

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Wright, Fay. "Single carers." In A Labour of Love, 89–105. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003303930-8.

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Conference papers on the topic "Carers":

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Thompson, Catherine, Sarah Shaw, and Sadaf Adnan. "P-193 Kirklees carers consortium- partnership working to benefit carers." In Dying for change: evolution and revolution in palliative care, Hospice UK 2019 National Conference, 20–22 November 2019, Liverpool. British Medical Journal Publishing Group, 2019. http://dx.doi.org/10.1136/bmjspcare-2019-huknc.215.

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Reeves, Helen, Gina Gardner, Fiona McCracken, Asima Hussain, and Pat Roberts. "P-116 Supporting carers during a pandemic – transforming dementia carers’ support." In A New World – Changing the landscape in end of life care, Hospice UK National Conference, 3–5 November 2021, Liverpool. British Medical Journal Publishing Group, 2021. http://dx.doi.org/10.1136/spcare-2021-hospice.133.

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Liu, Noreena Yi-Chin, Gary Wills, and Ashok Ranchhod. "Game for Supporting Dementia Carers." In 2018 IEEE Games, Entertainment, Media Conference (GEM). IEEE, 2018. http://dx.doi.org/10.1109/gem.2018.8516466.

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Smith, Kirsten. "Supporting carers through intelligent technology." In the companion publication of the 19th international conference. New York, New York, USA: ACM Press, 2014. http://dx.doi.org/10.1145/2559184.2559192.

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Davies, Julie, Alex Kevill, and Dinuka Herath. "P-270 Wellbeing, the lone HR practitioner, and managing volunteers: caring for the carers’ carers." In Transforming Palliative Care, Hospice UK 2018 National Conference, 27–28 November 2018, Telford. British Medical Journal Publishing Group, 2018. http://dx.doi.org/10.1136/bmjspcare-2018-hospiceabs.295.

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Davis, Hilary, Sonja Pedell, Antonio Lopez Lorca, Tim Miller, and Leon Sterling. "Researchers as proxies for informal carers." In OzCHI '14: the Future of Design. New York, NY, USA: ACM, 2014. http://dx.doi.org/10.1145/2686612.2686652.

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Green, Sarah. "P-19 Carers cuppa – a success story." In People, Partnerships and Potential, 16 – 18 November 2016, Liverpool. British Medical Journal Publishing Group, 2016. http://dx.doi.org/10.1136/bmjspcare-2016-001245.43.

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Ranasinghe, Ravindra, Lakshitha Dantanarayana, Antony Tran, Stefan Lie, Michael Behrens, and LiYang Liu. "Smart hoist: An assistive robot to aid carers." In 2014 13th International Conference on Control Automation Robotics & Vision (ICARCV). IEEE, 2014. http://dx.doi.org/10.1109/icarcv.2014.7064501.

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Albuquerque, Carlos. "Level Of Overloading And Difficulties Of Informal Carers." In 3rd International Conference on Health and Health Psychology 2017. Cognitive-crcs, 2017. http://dx.doi.org/10.15405/epsbs.2017.09.11.

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Taylor, Andrea, Richard Wilson, and Stefan Agamanolis. "Supporting carers in their caring role through design." In the 27th international conference extended abstracts. New York, New York, USA: ACM Press, 2009. http://dx.doi.org/10.1145/1520340.1520605.

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Reports on the topic "Carers":

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Bocioaga, Andreea. Short Breaks Funding and Carers' Outcomes. Iriss, September 2021. http://dx.doi.org/10.31583/esss.20210917.

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Ogden, Jessica, Simel Esim, and Caren Grown. Expanding the care continuum for HIV/AIDS: Bringing carers into focus. Population Council, 2004. http://dx.doi.org/10.31899/hiv2.1033.

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Sanders, Robert. ESSS Outline: Carers mental and physical health. Iriss, October 2020. http://dx.doi.org/10.31583/esss.20201029.

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Kenny, Caroline, and Aine Kelly. Unpaid Care. Parliamentary Office of Science and Technology, July 2018. http://dx.doi.org/10.58248/pn582.

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Abstract:
This POSTnote looks at the numbers of unpaid carers across the UK, and the amount and type of care provided. It examines the impacts of providing unpaid care on carers’ education, employment, finances, health and wellbeing, and personal and social relationships. The note reviews the different types of support available for carers and examines evidence on their effectiveness.
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Bocioaga, Andreea. Experiences of young carers in university and transitioning to work. Iriss, December 2019. http://dx.doi.org/10.31583/esss.

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Bocioaga, Andreea. The experiences of young carers in university and in transitioning to work. Iriss, December 2019. http://dx.doi.org/10.31583/esss/20191209.

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MacArtney, John I., Joanna Fleming, Abi Eccles, Catherine Grimley, Helen Wesson, Catriona Mayland, Sarah Mitchell, et al. Impact of Covid-19 pandemic on Hospices (ICoH): Carer Cohort Report. University of Warwick Press, May 2022. http://dx.doi.org/10.31273/978-1-911675-03-7.

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This report describes the diversity of experiences informal carers for people with life-limiting illnesses who were supported by hospices in the West Midlands during the pandemic. It is one of four cohort reports – the others focus on patients, frontline hospice staff, and senior managers respectively – that form the evidence base for a Policy Report into the impact of Covid-19 on hospices. In these reports we address the nine key themes that were identified as potentially important in our previous collaborative knowledge synthesis (MacArtney et al., 2021) and seek to address some of the policy gaps we identified in our review of recommendations for hospice practice and policy (Langen-Datta et al., 2022). Together these outputs are the result of an Economic and Social Research Council funded study (grant number: ES/W001837/1). This is one of the first studies to contribute an in-depth exploration of hospice-based experiences of the pandemic to the growing body of knowledge about the effectiveness and effects of changes to hospice services, at regional and national levels in response to Covid-19. The aim of this report is therefore to explore experiences of those informal carers of people with life-limiting conditions and the effects of the Covid-19 pandemic on the care and support they experienced, to identify recommendations for clinical practice and healthcare policy. Drawing on these findings, this report offers recommendations for hospices and clinicians who continue to provide care and support for people with life limiting conditions and those that care them during the ongoing pandemic. These recommendations will also be of interest to local commissioners who will need to work with hospices in their region to ensure informal carers receive the support they need, and national policymakers who will need to ensure the necessary resources and guidance are available.
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MacArtney, John I., Joanna Fleming, Abi Eccles, Catherine Grimley, Helen Wesson, Catriona Mayland, Sarah Mitchell, et al. Impact of Covid-19 pandemic on Hospices (ICoH): Staff Cohort Report. University of Warwick Press, May 2022. http://dx.doi.org/10.31273/978-1-911675-04-4.

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This report describes the diversity of experiences of hospice staff who worked in operational roles in hospices in the West Midlands during the Covid-19 pandemic. It is one of four cohort reports – the others focus on patients, carers, and senior managers respectively – that form the evidence base for a Policy Report into the impact of Covid-19 on hospices. In these reports we address the nine key themes that were identified as potentially important in our previous collaborative knowledge synthesis (MacArtney et al., 2021) and seek to address some of the policy gaps we identified in our review of recommendations for hospice practice and policy (van Langen-Datta et al., 2022). Together these outputs are the result of an Economic and Social Research Council funded study (grant number: ES/W001837/1). This is one of the first studies to contribute an in-depth exploration of hospice-based experiences of the pandemic to the growing body of knowledge about the effectiveness and effects of changes to hospice services, at regional and national levels in response to Covid-19. The aim of this report is therefore to explore the effects the Covid-19 pandemic had on the experiences of hospice staff as they sought to provide care and support to people with life-limiting conditions and those that cared for them so that we can identify recommendations for clinical practice and healthcare policy. Drawing on these findings, this report offers recommendations for hospices and clinicians who continue to provide care and support for people with life limiting conditions and those that care them during the ongoing pandemic. These recommendations will also be of interest to local commissioners who will need to work with hospices in their region to ensure informal carers receive the support they need, and national policymakers who will need to ensure the necessary resources and guidance are available.
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Di Campli San Vito, Patrizia, Stephen Brewster, Satvik Venkatesh, Eduardo Miranda, Alexis Kirke, David Moffat, Sube Banerjee, Alex Street, Jorg Fachner, and Helen Odell-Miller. RadioMe: Supporting Individuals with Dementia in Their Own Home... and Beyond? CHI '22 Workshop - Designing Ecosystems for Complex Health Needs, 2022. http://dx.doi.org/10.36399/gla.pubs.267520.

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Dementia is an illness with complex health needs, varying between individuals and increasing in severity over time. Approaches to use technology to aid people with dementia are often designed for a specific environment and/or purpose, such as the RadioMe system, a system designed to detect agitation in people with mild dementia living in their own home and calming them with music when agitation is detected. Both the monitoring and intervention components could potentially be beneficially used outside of the own home to aid people with dementia and carers in everyday life. But the adaptation could put additional burdens on the carer, as many decisions and the handling of the data and software could rely on their input. In this paper we discuss thoughts on the potential role of the carer for adaptations of specified system’s expansion to a larger ecosystem on the example of RadioMe.
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Ly, Lena, Jennifer Philip, Peter Hudson, and Natasha Smallwood. Singing for people with advance chronic respiratory diseases: a qualitative meta-synthesis. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, August 2022. http://dx.doi.org/10.37766/inplasy2022.8.0017.

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Review question / Objective: This study undertook a meta-synthesis of qualitative data with the aim of collating, synthesizing, and evaluating the current evidence regarding the experiences of singing for people with advanced chronic respiratory disease. Condition being studied: Advanced respiratory illnesses are disorders that impact the airways and other structures of the lung. People with lung cancer, chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) frequently experience progressive, frightening breathlessness, cough and fatigue, which affect their quality of life. Furthermore, people with advanced chronic respiratory disease (CRD) and their carers experience a high prevalence of loneliness and uncertainty, especially if breathlessness is felt to herald death and thus, require both psychological and practical supportive care to cope with their symptoms.

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