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Young carers as co-designers of a web-based support system: the views of two publics

Aim: The aim of the study was to reveal young carers' views of design of a web-based support system (WBSS) directed to them and the differences between their views and the views of project representatives (PRs), in a participatory design process.

Thu, 07/20/2017 - 15:11

Preference for place of death in Germany

Background: Dying in the preferred place is considered a key requirement for a “good death.” The aims of our study were to explore preferred places of death of deceased people and their bereaved relatives in Rhineland-Palatinate (Germany). We further wanted to assess the congruence between preferred and actual place of death.

Thu, 07/20/2017 - 15:11

Impact of home based long term care on informal carers

Background: Well coordinated and integrated home based care is an efficient and cost effective model for providing long term care. There is, however, emerging evidence to suggest that family members pay a price for taking on long term care responsibilities at home.; Objective: This article draws on published literature to provide an overview of the health, economic, and social issues faced by informal carers.

Thu, 07/20/2017 - 15:10

Respite: carers' experiences and perceptions of respite at home

Background: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.

Thu, 07/20/2017 - 15:10

Job satisfaction and quality of life among home care workers: a comparison of home care workers who are and who are not informal carers

Background: Job satisfaction and quality of life among home care workers who serve simultaneously as informal carers for their own family members have seldom been explored. This study examined how this dual role influences job satisfaction and quality of life by comparing these dual carers with home care workers who do not provide informal care. The study also explored whether the factors related to job satisfaction and quality of life between these two groups were different.

Thu, 07/20/2017 - 15:10

Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial

Objective: To explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals. Design: Qualitative interview and focus group study. Setting: Community and hospital-based focus groups and interviews. Participants: Stable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11).

Thu, 07/20/2017 - 15:10

Dementia and ethics: the views of informal carers

There has been little work on the ethical issues facing non-professionals who care for relatives or others with dementia. A qualitative pilot study was conducted in ten such individuals, eight of them women, caring for persons drawn mainly from one general practice. The interviews indicated that many of the dilemmas faced by carers are ethical and that the issues differ from those faced by professionals. Ethical issues are sometimes the most troublesome matter for carers. Unlike issues for professionals, they arise from a personal context and are shaped by long-term relationships.

Thu, 07/20/2017 - 15:09

Who cares for the carers? The district nurse perspective

Background. Community care of elderly and disabled people is increasing. Primary care teams are expected to provide support to the informal carers essential for its success.

Objective. To explore district nurse (DN) views about roles of the primary care team and what is needed for support of informal carers.

Method. A qualitative analysis of open-ended questions contained in a larger postal questionnaire.

Thu, 07/20/2017 - 15:09

When dementia is in the house: needs assessment survey for young caregivers

To learn more about the needs and experiences of young carers for patients of frontotemporal dementia (FTD) in order to create a relevant support website for young caregivers to dementia patients.

Two focus groups were held with a total of fourteen young carers aged 11-18. The data corpus was collected through a semi-structured interview facilitated by a medical journalist who had prior experience as a caregiver to a patient with FTD. The transcripts were narrowed to a dataset for descriptive analysis using a coding scheme to reveal the main themes of their responses.

Thu, 07/20/2017 - 15:09

Primary caregivers' satisfaction with clinicians' response to them as informal carers of young people with first-episode psychosis: a qualitative study

Aim.  To explore first-time primary caregivers’ experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis.

Background.  Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians.

Design.  Qualitative interpretative phenomenological analysis.

Thu, 07/20/2017 - 15:09

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