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Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages.

Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them.

Thu, 07/20/2017 - 15:22

'A whole month of pleasure' - making music on the South Downs

This article describes an innovative project for people with dementia and their carers at Glyndebourne Opera House. During November and December 2008 and 2009, the Glyndebourne education department provided a series of 4 sessions for people with dementia and their carers. The Glyndebourne project was jointly funded and developed through a partnership between Glyndebourne Festival Opera and the Lewes Villages Dementia Carers Outreach Service. Between 20 and 30 people with dementia and their carers took part in the project each year.

Thu, 07/20/2017 - 15:22

Living wages and the ‘making work pay’ strategy

Poverty among workers is a perennial problem. Recently there has been much interest in the idea of living wages. As mechanisms to increase wages above the ‘poverty line’, living wages present an alternative to New Labour’s ‘making work pay’ strategy; a combination of minimum wage regulation and means-tested, in-work relief.

Thu, 07/20/2017 - 15:22

Care and support: what's changing?

Information on what the changes introduced by the Care Act will mean for carers and the cared for. The resource provides an explanation of care and support in England and outlines key elements of the act, including: deferred payment agreements; needs and eligibility; support for carers; and cap on care costs.

Thu, 07/20/2017 - 15:22

Group support during caring and post-caring: the role of carers groups

This article discusses the findings about the role of face-to-face carers groups which emerged from a qualitative, interpretive study of 37 former carers' experiences in the UK. The study was informed by grounded theory and semi-structured in-depth interviews were used as the main method of data collection. The advantages and disadvantages of carers groups during caring and post-caring that were identified are presented.

Thu, 07/20/2017 - 15:21

User and carer involvement in social work education - a university case study: manipulation or citizen control?

This paper provides an account of one university's experience of involving service users and carers in the delivery of the new undergraduate and postgraduate social work degrees. It poses the question as to whether user and carer involvement in social work education can be viewed as a means of promoting citizen participation or whether it is a case of manipulating relatively powerless groups. In addressing this question, service users and carers and social work tutors describe, from their own distinct perspectives, the processes in which they were both involved.

Thu, 07/20/2017 - 15:21

Quality of relationships between care recipients and their primary caregivers and its effect on caregivers' burden and satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found.

Thu, 07/20/2017 - 15:21

What are the factors that facilitate or hinder resilience in older spousal dementia carers? a qualitative study

Objectives: Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as ‘the process of negotiating, managing and adapting to significant sources of stress or trauma’. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework .

Thu, 07/20/2017 - 15:21

The spiritual gifts and burdens of family caregiving

This article acknowledges the gifts of caregiving and recognises the special spiritual burden that may accompany, and at times even displace, those rewards.  Counselors and others can offer the types of spiritual support that caregivers require as they struggle with the daily difficulties of caregiving and the spiritual issues that caregiving raises.

Thu, 07/20/2017 - 15:21

Draft national minimum eligibility threshold for adult care and support: a discussion document

The White Paper 'Caring for our future: reforming care and support' sets out plans to develop and test potential new assessment and eligibility models. From April 2015, subject to the passage of the Care Bill, a new national minimum threshold for eligibility will be specified, which will set a guarantee of the minimum needs which local authorities must meet in every area. This will be introduced through a provision in clause 13 of the Bill, which requires Secretary of State to make regulations to set out the “eligibility criteria” for all local authorities.

Thu, 07/20/2017 - 15:21

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