Rationed Care: Assessing the Support Needs of Informal Carers in English Social Services Authorities

The passing of the Carers (Recognition and Services Act) 1995 was a step forward in trying to ensure that people who provide informal care to disabled, sick or elderly relatives or friends are properly recognised and properly supported. The Carers Act gave informal carers the right to an assessment of their own needs, and this article is based on a study into the impact of the legislation in four local authority social services departments. It is argued that the vision of supporters of the Carers Act, namely to achieve real benefits for many carers, has yet to be realised. The analysis draws on Klein et al.’s (1996) framework of service rationing strategies to demonstrate that decisions about priority setting and different forms of rationing of social care took place at three different levels: national government, local authority and front-line practitioner. Evidence is presented to show that some carers chose to impose rationing on themselves by reducing their demands. The article concludes with comments on the implications of rationing decisions for policy and practice

Unpaid carers’ access to and use of primary care services

GPs and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A fivefold typology is described covering barriers arising from: professional responses to the carers’ role, the way services are organised and delivered, language or culturally held beliefs and practices, carer or care recipient characteristics, and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals

Scoping studies: towards a methodological framework

This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews

The Individual Budgets Pilot Projects: Impact and Outcomes for Carers

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Pathways of Paid Work, Care Provision, and Volunteering in Later Careers: Activity Substitution or Extension?

It is well established that what happens to older people in one domain (like paid work) is likely to be related to what happens in another domain (like family caring or voluntary work). There is, however, limited research on the interplay between multiple activity domains in later careers. Research tends to focus on one domain (such as employment), and bring in aspects from other domains (such as volunteering) to explain outcomes. This article instead examines the interplay between 3 domains—paid work, care provision, and volunteering—using sequence analyses, cluster analyses, and loglinear modeling. It assesses 2 competing perspectives. The role substitution perspective suggests people take on activities (such as volunteering) to replace the loss of other activities (such as paid work). The role extension perspective alternatively suggests that people that are active in one area are likely to be active in others as well. Using the first 6 waves of the English Longitudinal Study of Ageing (ELSA), we examine 10-year pathways taken by individuals aged 50+ in relation to paid work, care provision, and volunteering. We find little support for either view of role substitution or extension. The 3 activity domains were largely independent of each other, suggesting that the factors influencing involvement in different combinations of activities are more complex. Nevertheless, we found some indicative evidence that part-time work and volunteering were complementary. Gender was important for the combination of pathways in paid work and care provision

A Scoping Review of Transitions, Stress, and Adaptation Among Emerging Adults

This scoping review examined research on transitions among emerging adults, 18- to 30-year-olds, to identify designs, populations, frameworks, transition types, and transition outcomes. A librarian conducted the search, yielding 2067 articles. Using predefined criteria, teams screened abstracts and reviewed articles, with 82% to 100% interrater agreement. Data from the final 160 articles were placed in evidence tables and summarized. Most frequently, the studies had exploratory-descriptive designs (69%), nondiagnosed samples (58%), no theoretical frameworks (58%), developmental transitions (34%), and health-related behavior outcomes (34%). This transition research is in an early stage of knowledge development and would benefit from further theory development

Marginalised or enabled voices? 'User participation' in policy and practice

The idea of participation has been central to many policy developments in recent years. Both Conservative and Labour governments have used notions of participation and involvement in attempts to justify and implement their social policies. Yet, despite a plethora of initiatives and guidance around ‘participation’ emerging from all levels of government, and a substantial academic literature, there remains a major, and potentially damaging, lack of clarity over many aspects of participation, while the secret of achieving ‘real’ participation appears to continue to remain elusive

Professional collaboration in searching the evidence for an ill‐defined concept

This paper outlines the inter‐professional collaboration of the authors, a PhD student, his supervisor and an information professional, to systematically search the literature for an ill‐defined concept. The research question posed for the scoping literature review indicated that the topic, the subjective socio‐economic status and health of adults with intellectual disabilities, was rare. The need for a methodological search process was therefore identified and successfully carried out. The paper presents an analysis of the processes and the collaboration involved in developing a successful search strategy. The resulting transformative learning by the researcher of the professional practice of the information specialist illuminates their facilitating and supportive role in advancing health related research

Making informed choices in social care: the importance of accessible information

The current policy trend is to encourage greater choice in the use of welfare services. To make informed choices, people need information. The process of finding and using information has costs for individuals in terms of effort, time and material resources. These costs are different for different people and impact on their use of information in different ways. Thus, the accessibility of information is important in ensuring those people who need to make choices can do so in an informed way. This paper discusses the importance of information in making informed choices about social support by drawing on the findings of a scoping review of government research and development activity on the accessibility of information about adult social care services. The scoping review was carried out in spring 2006. Details of recent, current and planned projects were obtained through discussions with staff in government departments, government agencies and other related organisations identified using a snowballing technique. Forty-two contacts were made. Eleven research and 36 development projects were identified that aimed to investigate or improve the accessibility of information about social care services. A limited literature search was undertaken on information needs in areas not already under investigation by government. Eighteen articles were identified. Information and helpline staff from six voluntary organisations gave their views on the accessibility of information about social care services. Our findings show that there is no government-related or other recent research evidence on the specific information access needs for some user groups and services, for example, people from ethnic minority groups. For other user groups, such as people with chaotic lifestyles, there is evidence on information needs but no current or planned development projects to address these needs. The implications for the costs of finding and processing information to aid informed choices are discussed