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Contracting one's family members: the Dutch care allowance

This chapter focuses on systems of payment for social care in the Netherlands where an elaborate system was developed in the 1990s of 'personal budgets', supplied directly to care users and heavily regulated, which enabled them to pay relatives, friends and neighbours for appropriate help. Despite the efficiency and popularity of the PGB (Dutch Care Allowance or personal budget) the Dutch government is committed to reducing the scope and costs of the scheme. The chapter reviews the PGB in 2004, the impact of the subsequent changes and the PGB's uncertain future.

Thu, 07/20/2017 - 15:24

The need to know: informal carers and information

There is a growing recognition that the carers of cancer patients require information. A key source of this information is the formal health care system that patients, and thus carers, encounter. However, the research literature suggests a lack of clarity on the part of service providers concerning the type, amount, timing and purpose of information for carers. This lack of clarity is reflected in the ways carers have been ‘tacked on’ to patients and thus are often treated as co-clients.

Thu, 07/20/2017 - 15:24

Testing Twigg and Atkin's typology of caring: a study of primary care professionals' perceptions of dementia care using a modified focus group method

The present article explores professional attitudes to family members supporting an older person newly diagnosed with dementia. It draws on professional perspectives derived from a series of 24 multidisciplinary workshops held in the UK, analysed using a typology developed by Twigg in 1989. The primary care workers' understanding of carers' needs and circumstances fitted best with Twigg's models of carers as resources and co-workers, but showed limited awareness of carers' responses and attitudes to caring.

Thu, 07/20/2017 - 15:23

Advanced heart failure: impact on older patients and informal carers

Aim.  This paper reports a study exploring the impact of advanced heart failure on the lives of older patients and their informal carers.

Background.  Prognosis is poor in heart failure, with more than a third of patients dying within 12 months of diagnosis, and end-of-life symptoms are distressing and poorly controlled. Although end-of-life care for people with heart failure has received increased attention in recent years, there are still few data on the impact of advanced heart failure on the lives of patients and their informal carers.

Thu, 07/20/2017 - 15:23

‘It’s all changed:’ carers’ experiences of caring for adults who have Down’s syndrome and dementia

A qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down's syndrome and dementia. The data were analysed thematically. Carers' information and support needs were seen to change at pre-diagnosis, diagnosis and post-diagnosis. Helping carers to manage the changing nature of the adult with dementia is seen to be an essential part of the health professional's role.

Thu, 07/20/2017 - 15:23

Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies

BACKGROUND: Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population.

Thu, 07/20/2017 - 15:23

Former palliative caregivers who identify that additional spiritual support would have been helpful in a population survey

Background : Palliative care encompasses physical, psychosocial and spiritual care for patients and caregivers. No population data are available on bereaved people who subsequently report that additional spiritual support would have been helpful.

Thu, 07/20/2017 - 15:23

Young caregivers in the end-of-life setting: a population-based profile of an emerging group

Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services.

Thu, 07/20/2017 - 15:23

People with learning disabilities, carers and care workers awareness of health risks and implications for primary care

Background. People with learning disabilities have become increasingly exposed to health risk with the move to community living. Yet, health promotion is poorly developed with a heavy reliance on primary care.

Objectives. To elicit the perceptions of people with learning disabilities, carers and care workers regarding risk factors associated with cardiac disease.

Thu, 07/20/2017 - 15:23

Using cost-effectiveness analysis to compare Hospital at Home and in-patient interventions, part 1

 An economic analysis was conducted as an integral part of a comparison of the effectiveness and suitability of Hospital at Home (HaH) and in-patient interventions. The sample comprised of 109 adult primary total joint replacement patients and 21 of their coresident informal carers.

• The paper is presented in two parts. Part 1 includes the background and rationale for the study and the findings from the comparison of the effectiveness of the two interventions using multiple data collection sources.

Thu, 07/20/2017 - 15:23

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