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Access to information

Understanding the informational needs of patients with IPF and their caregivers : ‘you get diagnosed, and you ask this question right away, what does this mean?’

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients' individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF.

Tue, 05/14/2019 - 19:29

Caring for the Caregiver: Identifying the Needs of Those Called to Care Through Partnerships with Congregations

As the older adult population continues to grow, the prevalence of chronic diseases is also increasing, leading to the need for novel ways of managing this large population of patients. One solution is to focus on informal caregivers. These informal caregivers already make a substantial contribution to our nation's healthcare finances and patient health outcomes.

Wed, 10/03/2018 - 13:14

‘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

Joint declaration on post-diagnostic dementia care and support

A shared approach to improving the care and support for people with dementia, their families and carers receive following a diagnosis. The declaration sets out: a shared commitment to joint action across government, health, social care, the third sector and all other relevant partners; the ambition to deliver better quality post-diagnostic care; and the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carers.

Thu, 07/20/2017 - 15:23

START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants’ views about the intervention

Objectives To analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms.

Design A qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically.

Thu, 07/20/2017 - 15:21

Support in the community for people with dementia and their carers: a comparative outcome study of specialist mental health service interventions

Background: This study aimed to evaluate outcomes for carers receiving the Admiral Nurse Service, a specialist mental health nursing service for carers of people with dementia. In contrast to many community mental health teams, it works primarily with the caregiver, focuses exclusively on dementia and offers continuing involvement, throughout the caregiving career, including emotional support, provision of information and coordination of practical support.

Thu, 07/20/2017 - 15:21

Family caregiver self-identification: implications for healthcare and social services professionals

This article focuses on a phenomenon that health and social service professionals face: Many family caregivers do not self-identify. The consequences of this lack of self-definition and the implications for development of programs that serve caregivers are discussed. The Mount Sinai Medical Center Caregivers and Professionals Partnership is described as an example of a hospital-based program that has recognized this dilemma and worked toward reaching out to those who do self-define, as well as those who may not.

Thu, 07/20/2017 - 15:20

Copying letters to service users with learning disabilities: opinions of service users, carers and professionals working within learning disability services

The NHS Plan, Department of Health (2000) made a commitment that patients should be able to receive copies of clinicians’ letters about them as a right in order to improve communication and enable patients to participate in their care. In South Gloucestershire, the opinions of local service users with learning disabilities, their carers, and professionals working within learning disability services about this issue were sought using questionnaires and focus groups in order to identify and then develop good practice.

Thu, 07/20/2017 - 15:19

Choice of where and how you live: how families can create new solutions to a familiar problem

The White Paper Valuing People said the aim for people with learning disability should be choice of where and how you live. This is rarely the experience to date. A publication has been written for family carers, social workers and others who want to find out more about the various housing and support options for people with learning disabilities. It explains the choices, how to go about getting housing and what support people can find. Six individuals and their families allowed us to describe their different ways of creating housing and support arrangements.

Thu, 07/20/2017 - 15:19

On-line information and registration with services : patterns of support for carers in England

Purpose – The paper aims to ascertain how local authorities and other services are responding to central government strategies to make support for family carers a priority.

Design/methodology/approach – A web-based audit of local authority public information for carers was undertaken (n=50). The sample covered different parts of England and different local authority types.

Thu, 07/20/2017 - 15:19

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