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Web of science - exported 12/7/2016

Burden of care in amyotrophic lateral sclerosis

Objectives: Amyotrophic lateral sclerosis (ALS) is a fatal disease with unique demands on patients and carers. Patients and methods: The total burden of care and burden components in 37 ALS carers were measured using validated questionnaires.

Thu, 07/20/2017 - 15:18

Carers and co-production: enabling expertise through experience?

Purpose– The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.

Thu, 07/20/2017 - 15:17

Investigation of a group education programme for the informal carers of people with dementia

There is limited evidence to suggest the benefits of education programmes to the well-being of the informal carers of people with dementia. This study aimed to investigate the effect of a six-week group education programme on carers’ levels of stress and depression.

Thu, 07/20/2017 - 15:17

End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

Background: End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research.

Thu, 07/20/2017 - 15:17

The Perseverance Time of Informal Carers of Dementia Patients: Validation of a New Measure to Initiate Transition of Care at Home to Nursing Home Care

Background: Health care systems aim to involve as much informal care as possible and dementia patients prefer to stay home as long as they can. In this context, perseverance time (Pt)—the period that the informal carer indicates to be able to maintain current care if the situation remains stable—is an important concept. Objective: The aim of this study was to introduce the concept Pt and validate it in a sample of informal carers of dementia patients living at home.

Thu, 07/20/2017 - 15:17

Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study

Background: Since its launch in 2003, the Dutch Lung Cancer Information Center’s (DLIC) website has become increasingly popular. The most popular page of the website is the section “Ask the Physician”, where visitors can ask an online lung specialist questions anonymously and receive an answer quickly. Most questions were not only asked by lung cancer patients but also by their informal caregivers. Most questions concerned specific information about lung cancer.

Thu, 07/20/2017 - 15:17

Towards a Code of Practice for Effective Communication With People With Dementing Illnesses

In this article, the authors highlight the need for a Code of Practice (CoP) to address the communicative needs of people with dementia and their formal and informal carers. The authors also detail a proposed CoP, as well as an innovative and inclusive consultation process through which the authors and other stakeholders will produce a complete final working version. The authors produced a three level framework for a proposed CoP. Level 1 is a statement of beliefs and principles underlying a person-centred and empowering approach to effective communication with people with dementia.

Thu, 07/20/2017 - 15:17

Daily life for young adults who care for a person with mental illness: a qualitative study

This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16–25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis.

Thu, 07/20/2017 - 15:17

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