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Making decisions for people with dementia who lack capacity: qualitative study of family carers in the UK

Objective To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.

Design Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.

Setting Community settings in London.

Thu, 07/20/2017 - 15:21

Carers of people with learning disabilities, and their experience of the 1995 Carers Act

This paper seeks to highlight the impact of the Carers (Recognition and Services) Act of 1995 on carers of people with learning disabilities. It draws on research conducted in the south west between 1997 and 1999, which examined the views and experiences of carers who had an assessment of their needs, together with those of the person they care for and the professional conducting the assessment. It concludes that the Carers Act is not widely used, or understood, by this group of carers.

Thu, 07/20/2017 - 15:21

Equal but different

Users, carers and the wider public are just as important to the real picture of long-term care provision and funding as local authority and NHS commissioners. So co-ordination is about more than agency structures.

Thu, 07/20/2017 - 15:21

Community care for people with disability: blurring boundaries between formal and informal caregivers

Health care for individuals with disability is increasingly shifting from institutional settings to the "community," with assistance by those in the formal sector. In this article, the authors examine 5 case studies illustrating interactions and relationships between people with disability and their caregivers, using qualitative data collected as part of a community study of disability conducted in a medium-sized city in the northeastern United States.

Thu, 07/20/2017 - 15:21

The caring experience: learning about community care through spending 24 hours with people who use services and family carers

This paper describes a teaching and learning initiative developed in a UK social work programme that has involved carers, service users, academic social work staff and practitioners. Post‐graduate student social workers spend 24 hours in agreed periods with family carers or people who use social work services. The paper explains the origins of this initiative, rooted in a model of service user and carer involvement established over a number of years within the social work programme at the University of Dundee, Scotland.

Thu, 07/20/2017 - 15:21

Enhancing working partnerships with carers and families: a strategy and associated training programme

This paper describes the increased national focus on including families and carers in all aspects of mainstream mental health services. It proposes that the specific recommendations included in the National Service Framework for Mental Health be brought together in the form of a strategy to enhance working partnerships with families and carers. It advocates that the implementation of the NSF requires a comprehensive awareness and basic skills training in order that the consideration of families and carers becomes a routine part of mainstream services. 

Thu, 07/20/2017 - 15:21

Caring as worrying: the experience of spousal carers

Background.  With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.

Thu, 07/20/2017 - 15:21

Expressed emotion at first-episode psychosis: investigating a carer appraisal model

Background Even at the first episode of psychosis, high expressed emotion (EE) characterises over half of patient–carer relationships. This study compared a carer appraisal model of EE with the ability of illness factors to predict EE at the first episode.

Aims To investigate the utility of a carer appraisal model of EE in first-episode psychosis.

Method We compared high- and low-EE carers of people who had first-episode psychosis (n=46).

Thu, 07/20/2017 - 15:21

Experiences of adult stroke survivors and their parent carers: a qualitative study

Objective: To explore the experiences of adult stroke survivors and their parent carers.

Design: Qualitative methodology: interpretative phenomenological analysis. Setting: Six residential areas across England and south Wales. Participants: Six adult stroke survivors (aged 27–46), six mothers (aged 59–76) and five fathers (aged 55–76).

Thu, 07/20/2017 - 15:21