United kingdom

Background. Government health care policy urges service providers to involve service users in the decision-making process. Research studies have recommended changes to current health care practice to facilitate this involvement. However, carers’ organizations continue to highlight a gap between policy and practice in relation to involvement.

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining.

This focus of this article is a qualitative, evaluative study of three Crossroads young carers projects. Focus group discussions took place with 24 young people aged 11-16 years. Data were analysed using a thematic content analysis approach. The themes of the research were: experiences of being a young carer, peer support, opportunities for time out and purposeful activities. The personal characteristics of the participants give rise to a number of worrying conclusions, that relatively young people were found to be undertaking primary caring roles over long periods of time.

Thousands of young carers and their families could lose more than £3,500 a year under proposed welfare reforms, according to The Children’s Society.

Background  Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects.

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.

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.

Objectives—To identify community nurses' perceptions of quality care provision for patients requiring palliative care.

Design—Semi-structured interviews were conducted with community nurses working within the district nursing service. An adaptation of Flanagan's critical incident technique was employed to elicit factors associated with high or poor quality palliative care. Interviews were tape recorded and transcribed. Data were analysed using thematic content analysis, recurrent themes being agreed by the research team.

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.

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.