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Quality of life measures for carers for people with dementia: measurement issues, gaps in research and promising paths
- Authors:
- MANTHORPE Jill, BOWLING Ann
- Journal article citation:
- Research Policy and Planning, 31(3), 2016, pp.163-178.
- Publisher:
- Social Services Research Group
Background: Providing support to a family member with dementia often comes at a cost to the quality of life (QoL) of the carer (caregiver), giving rise to current and future unmet needs for health and social care and support themselves. These have important implications for cost effective health and social care support services and pathways. This article summarises the findings of a scoping review of the literature on QoL measures for carers of people with dementia that was commissioned by the Medical Research Council to address what is ‘state of the art’ in measurement and identification, any gaps in the evidence base, and challenges for further research. Method: a scope of the literature using Medline and Psychlit (all years) as these are particularly relevant to health psychology was undertaken in March 2013, using combinations of the following keywords: quality of life, measure, scale, caregiver (including carer), chronic illness (the term long-term condition is generally captured under this phrase), dementia, cognitive impairment, Alzheimer’s disease. Results: there is a dearth of carer-reported QoL measures, in contrast to the existence of proxy scales for carers which are used to measure the patient’s/client’s QoL (prevalent in relation to dementia). Several methodological challenges were identified. Conclusion: caring for people with dementia often has both negative and positive consequences which need inclusion in measures but these may vary by individual and over time. The lack of consensus about what to measure and how in QoL of carers of people with dementia does not help practitioners or service funders. Measures need to be appropriate for younger and older carers, type of carer and caring tasks, and be sensitive to cultural and sociodemographic differences. (Publisher abstract)
Self-funders and social care: findings from a scoping review
- Author:
- BAXTER Kate
- Journal article citation:
- Research Policy and Planning, 31(3), 2016, pp.179-193.
- Publisher:
- Social Services Research Group
This paper draws on a scoping review of the evidence base about adults in England who purchase social care services and support using their own money. It presents a selection of the review’s findings relevant to self-funders and key aspects of the Care Act 2014. The review covers the years 2000 to 2015. Searches of electronic databases were complemented by a focused search of the websites of key organisations. After applying inclusion/exclusion criteria, and removing duplicates, details were extracted from 76 references. The majority focused on residential care (33), domiciliary care (12), or both (23). Studies used a range of research methods. The overall numbers and percentages of self-funders of home care and care home places have increased. There are variations across regions but limited evidence about demographic or socio-economic characteristics of self-funders. Self-funders feel they lack advice from local authorities; local authorities have limited knowledge of self-funders in their areas. People struggle to understand fees and the financial implications of long-term care. Providers are beginning to realise the potential of the self-funding market but full use is not yet being made of e-marketplaces. Key gaps in knowledge remain at a time when the number and importance of self-funders is increasing. (Publisher abstract)
Fighting a war of their own? The effects of parental deployment to a war zone on adolescent psychosocial development - an exploration of the evidence
- Author:
- MAGUIRE Julie
- Journal article citation:
- Research Policy and Planning, 27(1), 2009, pp.39-52.
- Publisher:
- Social Services Research Group
Drawing on the recent literature, this article examines the effects of parental deployment to a war zone on adolescent psychosocial development are explored. The themes of identity; attachment; separation and loss; and resilience are discussed. The findings demonstrated that identity formation can be affected and additional difficulties can impact upon a young person's ability to maintain friendships or engage with peers whilst a lack of control can increase vulnerability and ability to cope.
Implementing the Single Assessment Process for older people in England: lessons from the literature
- Authors:
- ABENDSTERN Michele, et al
- Journal article citation:
- Research Policy and Planning, 26(1), 2008, pp.15-31.
- Publisher:
- Social Services Research Group
With the introduction of the Single Assessment Process (SAP) in England, in 2004, the government aimed to address the shortcomings of the assessment of older people with health and social care needs. The SAP promoted a person-centred approach, multi-professional working and the standardisation of assessment in practice. By reviewing the literature on assessment from the mid-1980s to the present, this article indentifies issues that may help or hinder effective implementation of the SAP. In addressing assessment from the viewpoint of suggested that achieving the aims of the SAP will be a complex process, with historically contentious issues in assessment practice remaining relevant to the implementation of this policy.
Assistive technology, telecare, and dementia: some implications of current policies and guidance
- Authors:
- WOOLHAN John, GIBSON Grant, CLARKE Pam
- Journal article citation:
- Research Policy and Planning, 24(3), 2006, pp.149-164.
- Publisher:
- Social Services Research Group
Electronic assistive and telecare technologies in England and Wales have moved on less than a decade from being a fringe interest of a few enthusiasts - principally from within dementia care community - to mainstream provision in some areas. This paper traces the emergence and development of this technology and government policy, and offers some thoughts on the impact these changes may have on its use in dementia care settings.
No easy answers: the Warwickshire resource allocation study
- Author:
- GLASBY Jon
- Journal article citation:
- Research Policy and Planning, 21(1), 2003, pp.25-39.
- Publisher:
- Social Services Research Group
Presents the findings of a study on the use of deprivation measures to allocate resources between different geographical areas of a local authority. The study sought to consider the scope for replacing Warwickshire's current resource allocation procedures with a new deprivation measure: the Department of the Environment, Transport and the Regions (DETR) Indices of Deprivation 2000. As well as carrying out a literature review, the study incorporated a survey of all English local authorities to learn from their methods of resource allocation and their experiences of the DETR Indices of Deprivation 2000. Concludes that there are no easy answers to resource allocation and sets out a series of dilemmas that will need to be resolved by any social services department seeking to base its funding processes on a more rational and explicit methodology.
What counts as evidence? The communication of information about older people between health and social care professionals
- Authors:
- POWELL Jackie, et al
- Journal article citation:
- Research Policy and Planning, 21(3), 2003, pp.1-11.
- Publisher:
- Social Services Research Group
Draws on a study to provide an evidence base for strategies and effectiveness of the transfer of information about older people between health and social care practitioners at the health and social care interface. Reports on the development of a systematic approach to the review of the related research literature and presents some key findings. Goes on to discuss some methodological issues arising from a review covering both health and social care research. By locating this systematic review within the wider debate on evidence-based practice, considers the nature and scope of this form of evidence alongside other forms of evidence and their use in professional practice. Concludes with some observations regarding the relevance of the findings from this study for both practice and further research.
How to do a scoping exercise: continuity of care
- Authors:
- EHRICH Kathryn, et al
- Journal article citation:
- Research Policy and Planning, 20(1), 2002, pp.25-29.
- Publisher:
- Social Services Research Group
The NHS Research and Development Service, Delivery and Organisation Programme (SDO), is commissioning research that directly addresses the concerns of patients and professionals. Following a national 'listening exercise', continuity of care was identified as a priority area of research, and the National Co-ordinating Centre of the SDO Programme commissioned a 'scoping exercise' to define and limit the field of research on this subject. As this seems set to become a more common exercise, the authors explain how they interpreted the task of 'scoping', using some innovative methods. Raises some issues prevalent in many kinds of short-term research, and discusses some of the challenges and advantages of working in a multi-disciplinary team.
Young carers in the UK: research, policy and practice
- Authors:
- BECKER Saul, DEARDEN Chris, ALDRIDGE Jo
- Journal article citation:
- Research Policy and Planning, 18(2), 2000, pp.13-21.
- Publisher:
- Social Services Research Group
There is now a considerable body of research which shows that when children undertake significant care work within the home, and where they and their families lack appropriate health and social care support and adequate income, then many children can experience a range of outcomes, including impaired well-being, health and psycho-social development, poor educational attendance and performance, restricted peer networks and friendships and difficulties in making the smooth transition from childhood to adulthood. This article reviews the main research studies on young carers in the UK, examines the services available to support young carers and identifies the implications for future policy and practice, particularly in social care.
Services for mentally disordered offenders: a literature review
- Author:
- BAILEY Di
- Journal article citation:
- Social Services Research, 3, 1996, pp.41-57.
- Publisher:
- Social Services Research Group
Provides a useful framework for those involved in researching the area of services and diversion schemes for Mentally Disordered Offenders's (MDO's) against which the perceptions of diversionary practice in Northamptonshire could be judged. The review focuses on research findings in relation to the identification, care and treatment of MDO's in order to evaluate the effectiveness of the current diversion schemes in terms of promoting good practice and maximising individual outcomes of health gain, reduced risk and least restrictive disposal option.