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Digital support platform: a qualitative research study investigating the feasibility of an internet-based, postdiagnostic support platform for families living with dementia

OBJECTIVES: To establish the feasibility of the Digital Support Platform (DSP), an internet-based, postdiagnostic tool designed for families living with a diagnosis of dementia. DESIGN: Qualitative methods using normalisation process theory as an analysis framework for semistructured interview transcriptions. SETTING: A community care setting in the South-East Scotland. PARTICIPANTS: We interviewed ten dyads of people with Alzheimer's, vascular or mixed dementia (PWD), and their family carers, who had been given and had used the DSP for at least twomonths.

Tue, 05/14/2019 - 13:56

Quality of family relationships and outcomes of dementia: A systematic review

Objectives To evaluate the association between the quality of relationship between a person with dementia and their family carer and outcomes for the person with dementia. Design Systematic review. Eligibility criteria Cohort studies of people with clinically diagnosed dementia and their main carers. Exposures of interest were any elements of relationship quality, for example, attachment style, expressed emotion and coping style.

Tue, 05/14/2019 - 12:22

Protocol for a meta-integration: investigating positive aspects of caregiving in dementia

INTRODUCTION: The current work describes the protocol for a meta-integration investigating the positive aspects of providing care to someone living with dementia. We aim to understand the position of positive aspects in the caregiver experience as well as identify how positive aspects are commonly conceptualised, investigated and measured in literature.

Tue, 05/14/2019 - 09:58

Differences in risk factors and chronic conditions between informal (family) carers and non-carers using a population-based cross-sectional survey in South Australia

Background There is growing discussion on the impact of informal caregiving on the health status and morbidity of family carers. Evidence suggests a proportion of carers may be at risk of poor health outcomes. However, there are limited population-based studies that provide representative data on specific risk factors among carers (eg, blood pressure, cholesterol, smoking status, activity and body mass index) and major chronic conditions (eg, asthma, diabetes and arthritis). This study aimed to redress that imbalance.

Fri, 04/05/2019 - 10:40

Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role.

Mon, 04/01/2019 - 11:52

The unmet needs of informal carers of stroke survivors: a protocol for a systematic review of quantitative and qualitative studies

Introduction Stroke events deeply affect not only the stroke survivor but also often the quality of life and physical and psychological health of the family and friends who care for them. There is a need for further information about the unmet needs of these informal carers in order to develop support services and interventions. The primary objective of this review is to report and synthesise the research describing the unmet needs of carers of stroke survivors.

Mon, 04/01/2019 - 10:55

Behind the smile: qualitative study of caregivers' anguish and management responses while caring for someone living with heart failure

Background Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. Aims 1. To identify the factors that contribute to the experience of anguish. 2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Methods Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts.

Fri, 03/29/2019 - 10:15

P77 Levels of psychological distress and predictors of distress in family carers of patients with cancer at end of life

Background Family carers provide substantial support for patients at end-of-life. It is important to understand how caregiving impacts on carers to guide appropriate interventions to improve carer wellbeing.  The aims of this study were to investigate levels of psychological distress and predictors of distress during end of life care giving in a national sample of family carers of people with cancer. Methods Four-month post-bereavement postal survey of a national census sample of relatives reporting a death from cancer 1–16th May 2015.

Mon, 03/25/2019 - 12:51

Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

Background For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.

Mon, 03/25/2019 - 12:28

Supporting relatives and carers at the end of a patient's life

All doctors, irrespective of their specialty or the setting in which they work, will care for patients who die. Around half of all deaths occur in hospitals. Evidence suggests that the quality of communication around this process is poorer in hospitals than in other settings, according to responses from relatives who have experienced bereavement. Over half of NHS complaints concern care of the dying.This article discusses how to best support relatives and carers at the end of a patient's life.

Mon, 03/25/2019 - 10:08