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The use of non-invasive ventilation at end of life in patients with motor neurone disease: A qualitatitve exploration of family carer and health professional experiences

Background: Non-invasive ventilation improves quality and quantity of life in patients with motor neurone disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn.

Aim: This study aimed to describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation.

Thu, 07/20/2017 - 15:18

Perceptions and management of change by people with dementia and their carers living at home

This article presents findings from a research study that examined, by observation and interview, the nature of care as a form of social organization in the homes of people with dementia whose care was at least partly provided by relatives or friends. Twenty situations were included in which the carers and people with dementia were interviewed. Each participating pair was observed for an average of nine hours. Change was perceived, on the whole, in negative terms for both caregiver and the person with dementia.

Thu, 07/20/2017 - 15:18

Developing dementia care services across India

In the first of two articles about developing dementia services in India, Diana Kerr presents an overview of the country and describes two specific projects.

Thu, 07/20/2017 - 15:18

Identifying carers' needs in the palliative setting

There are an estimated half a million people in the UK who provide unpaid care for a relative or friend with a life-limiting or terminal illness at any one time. Every year thousands of people take on a caring role, whereas others find that this role has ended. This guide has been developed by an expert working group, and provides a framework for developing a carers’ assessment process. It offers advice on how to identify carers and gives an overview of the assessment methods currently used by palliative care providers.

Thu, 07/20/2017 - 15:18

Dyadic relationship scale: A measure of the impact of the provision and receipt of family care

Purpose: This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. Design and Methods: The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers.

Thu, 07/20/2017 - 15:18

An evaluation of the effectiveness of a case-specific approach to challenging behaviour associated with dementia

Objectives: Treatment of challenging behaviour in dementia using standardized psychopharmacological or psychosocial approaches remains problematical. A case-specific approach was trialled in this study, based on extensive evidence that each case is different in aetiology, the effects of the behaviour on others and what interventions are possible given the available resources.

Thu, 07/20/2017 - 15:18

An evaluation of the Mencap family adviser service in northern Ireland

For over three years, Mencap (Nl) has provided and largely funded an ‘Information and Advice Service’ aimed primarily at family carers and people with learning disabilities. The service employs four advisers who cover most of Northern Ireland, offering telephone but also face-to-face contact with enquirers. They have access to a specially developed, computerized database that contains details of local as well as national resources. This paper describes the service and the evaluation process used.

Thu, 07/20/2017 - 15:18

Burden on caregivers of people with schizophrenia: comparison between Germany and Britain

Background Burden on the relatives of patients with schizophrenia may be influenced not only by patient and caregiver characteristics, but also by differences in mental health service provision.

Aims To analyse whether family burden is affected by national differences in the provision of mental health services.

Thu, 07/20/2017 - 15:18

Caring for family members with chronic physical illness: a critical review of caregiver literature

This article reviews 19 studies (1987–2004) on quality of life for family caregivers helping those with chronic physical illness. Here we explore the concepts of and instruments used to measure caregivers' quality of life. We were particularly interested in understanding stress-related variables and documenting factors influencing quality of life based on family stress theory. Findings show that various positive and negative terms equated with quality of life were used to measure them.

Thu, 07/20/2017 - 15:18

Supporting family caregivers at the end of life: they don't know what they don't know

Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work.

Thu, 07/20/2017 - 15:18

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