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Extending the social exclusion debate: an exploration of the family lives of young carers and young people with ME

In this article the authors explore the day-to-day lives of two groups of young people. Both were the subject of research activities carried out between 1997 and 2000. The outcomes of that work into the lives of young carers and young people with ME (myalgic encephalomyelitis) have been extensively documented elsewhere; here we draw out some of the common factors that serve to socially isolate and exclude young people who are heavily reliant on, or are drawn into supporting, home-based caring relationships.

Thu, 07/20/2017 - 15:11

A survey of policy and practice on expenses and other payments to mental health service users and carers participating in service development

This paper reports a survey of 75 organisations commissioning and providing secondary mental health services regarding their policies and practice in respect of payment to mental health services users and informal carers for expenses and their time when participating in the design, development, delivery and monitoring of services. A wide range of statutory and non-statutory organisations was invited to participate.

Thu, 07/20/2017 - 15:11

A Questionnaire to Assess Carers' Experience of Stroke Rehabilitation

PURPOSE: To establish the validity and reliability of a questionnaire measuring the experience of informal carers of patients with stroke through acute and rehabilitation hospital treatment.

Thu, 07/20/2017 - 15:11

CarenapD -- a need-assessment for families with dementia; first use in Germany

In Germany the community care system is still not developed to meet the needs of families with dementia. The Scottish need-assessment CarenapD (Care Needs Assessment Pack for Dementia) records the need status of persons with dementia and initiates a care plan. Also the needs of informal carers are measured. After translating the assessment into German language, its practicality and adaptability was tested in this study from the perspective of the professional user. Also was tested, how the CarenapD results interpret the community care.

Thu, 07/20/2017 - 15:11

'Just Helping': children living with a parent with young onset dementia

Objectives: While the consequences of caring for younger people with dementia have been a growing area of research, little is known about the children of these individuals. This study aimed to discover whether children of younger people with dementia can be compared to other young carers, the impact of their caring on mood, burden and resilience and what could promote coping. Method: In-depth interviews were carried out with 12 participants aged 11-18. A grounded theory methodology was used, supplemented with three quantitative measures.

Thu, 07/20/2017 - 15:11

Access to health and social care services and information

Aim: The aim of this study was to explore carers' perceptions of their ability to access a range of health and social care services, including information about the services. Method: A total of 151 participants, who were all members of a charity set up and run by informal carers of people with learning disabilities, were given semi-structured questionnaires, which yielded qualitative and quantitative data. Further data came from two focus groups.

Thu, 07/20/2017 - 15:10

Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study

Because of the complex nature of the problems that carers of persons with dementia encounter, several comprehensive support programs for carers were developed in the past decade. One such program is the Meeting Centres Support Program (MCSP) that integrates different types of support for persons with dementia and their carers, which have proved to be effective in practice and/or research.

Thu, 07/20/2017 - 15:10

Evaluation of a brief educational program for dementia carers: the AENEAS Study

Objective: To evaluate the efficacy of a practical, easily implemented, educational intervention in group format for informal carers of persons with dementia. Methods: Multi-centre, randomised, controlled, single-blind trial involving 292 family caregivers of patients with moderate dementia in Alzheimer's disease. Results: Participants valued program components which had a practical impact on their caring role. The intervention achieved minor effects on the participants' psychological quality of life and did not reduce carer depression.

Thu, 07/20/2017 - 15:10

Relations between social support, appraisal and coping and both positive and negative outcomes in young carers

This study examined a stress/coping model of adjustment in early caregiving. It was hypothesized that better adjustment would be related to higher social support and approach coping, and lower stress appraisals and avoidant coping. One hundred young carers aged 10-25 years completed questionnaires. Predictors included choice in caregiving, social support, stress appraisal and coping. Dependent variables were global distress and positive outcomes (life satisfaction, positive affect, benefits).

Thu, 07/20/2017 - 15:10

End-of-Life Care in Italian Hospitals: Quality of and Satisfaction With Care From the Caregivers' Point of View—Results from the Italian Survey of the Dying of Cancer

Context: A number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.

Objectives: The aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.

Thu, 07/20/2017 - 15:10

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