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Utilising carer related research and knowledge: a scoping review and information resource. Research findings
- Authors:
- LARKIN Mary, MILNE Alisoun, HENWOOD Melanie
- Publisher:
- NIHR School for Social Care Research
- Publication year:
- 2019
- Pagination:
- 5
- Place of publication:
- London
A summary of key findings from a scoping review on carers and caring. The review carried out searches between June and December 2016, retrieving a total of 3,434 references. The resources were classified into four categories: the impact of care; carer variables - the characteristics and features of different types of carer and caring situations; Type of care - the nature of needs of the cared for person, and the features of the care situation; and Support and carers. Key findings include that: caring is extremely diverse and involves all sections and age groups of the population; although there are similarities in the experiences of carers, all caring is unique; and that knowledge about groups of 'hard to-reach' carers remains relatively poor and there are deficits in relation to BAME carers and LGBT groups. The report also outlines the implications of these findings for policy, practice and research. (Edited publisher abstract)
What do we know about older former carers? Key issues and themes
- Authors:
- LARKIN Mary, MILNE Alisoun
- Journal article citation:
- Health and Social Care in the Community, 25(4), 2017, p.1396–1403.
- Publisher:
- Wiley
Despite a significant growth in the number older former family carers, they remain largely invisible in carer-related research and literature. To begin to address this deficit, a four-stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes – the concept of ‘older former carer’, the legacies of caring, influences on the legacies of caring, conceptualising post-caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health-related legacies older former carers’ experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub-groups, such as carers of relatives admitted to a care home, than others. Methodology-related weaknesses include small sample sizes and a focus on a single, often condition-specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post-caring tends to be viewed as one of the final temporal ‘stages’ of the carer's ‘care-giving career’, a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer – namely formerality – as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding. (Publisher abstract)
Carers of older relatives in long term care: support needs and services
- Authors:
- MILNE Alisoun, HATZIDIMITRIADOU Eleni, CHRYSSANTHOPOULOU Christina
- Journal article citation:
- Generations Review, 14(3), July 2004, pp.4-9.
- Publisher:
- British Society of Gerontology
Reports on a study which aimed to explore the roles and support needs of carers whose relative is placed in long-term care; identify the range and types of services available; and explore was to support carers more effectively. It draws on evidence from a pilot study conducted in 2002/03 in one area of South East England, and a supplemental literature review.
Exemplar models and support for older carers and carers of people with dementia: informing commissioning
- Authors:
- HENWOOD Melanie, LARKIN Mary, MILNE Alisoun
- Publisher:
- Melanie Henwood Associates
- Publication year:
- 2018
- Pagination:
- 78
This scoping report identifies models of support for older carers and carers of people with dementia. The report was commissioned by NHS England in support of its Commitment to Carers programme. The scoping carried out a review of the literature and also identified examples from the third sector using an online survey and interviews. The results found the most frequently identified models of support related to peer support and befriending, educational/coping support and resilience development. High proportions of responding organisations indicated that they were also providing support for carers in BAME and LGBT communities, though largely indicative of an inclusive approach to services rather than responding to specific needs. Specific models of support for carers of people with younger onset dementia were relatively absent. The analysis focuses on the main cross-cutting themes, and in particular these concerned: information and practical help (including sub-themes of: beyond diagnosis; signposting; locally based community support; respite; carer hubs, and dementia hubs); relationships (including sub-themes of: peer support; co-dependency; and organisational relationships); model development (including contracts and tendering), and outcomes. The report identifies areas that offer the most promising directions for future development are: building carer resilience; reducing carer isolation and loneliness; living a life beyond diagnosis; reimagining respite; and space and scope to expand. (Edited publisher abstract)
Seeing the wood for the trees: carer-related research and knowledge
- Authors:
- HENWOOD Melanie, LARKIN Mary, MILNE Alisoun
- Publisher:
- NIHR School for Social Care Research
- Publication year:
- 2019
- Pagination:
- 44
- Place of publication:
- London
A summary report of a scoping review on carers and caring, which was funded by NIHR SSCR-funded undertaken between April 2016 and January 2017. The review brought together evidence and knowledge on carers and provided a detailed mapping of what is known about carers and caring. The report contextualises the review in relation to research and policy since the mid-1980. It has also been informed by reflections from a workshop held to discuss the findings. The report examines the findings across four key themes: Carer variables - characteristics of different types of carers and caring situations, such as age and ethnicity; Type of care - the needs of the cared for person and features of the situation; Impact of care - such as stress, resilience, and employment; and Support for carers. The key messages for practice, policy and research from the review include: the importance of building carers' resilience and enabling them to develop strategies to manage stress; the adoption of an integrated approach to research which incorporates the complexity of knowledge about care and care giving; addressing the deficits in existing knowledge and expanding the evidence base; and greater generation and use of longitudinal data in order to examine the impact and experience of caring over time. An extended report including a full bibliography of resources is also available. (Edited publisher abstract)
Seeing the wood for the trees. Carer-related research and knowledge: a scoping review
- Authors:
- HENWOOD Melanie, LARKIN Mary, MILNE Alisoun
- Publisher:
- Melanie Henwood Associates
- Publication year:
- 2017
- Pagination:
- iv, 303
This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference. (Edited publisher abstract)