English

An increasing demand for both formal and informal care is likely to result from the ongoing demographic transition at the same time as there is a further move away from the traditional domestic division of labour. Public policy-making that aims at increasing the supply of informal care necessitates knowledge about the relative importance of various incentives for individual care providers.

This article reports on the development of an instrument to measure dementia patients' and their families' experiences with care provision. Using the responses of 267 care recipient/caregiver dyads, exploratory factor analysis was used to extract an underlying structure of the dyads' assessments of their experiences with dementia networks of care. The results suggested that from the perspective of the care recipient and caregiver, it is the individuals who they interact with in their care journey that define and shape the evaluation of their experiences.

This paper discusses the experience of South Asian carers of a person with cerebral palsy. Previous research in this area has failed to explore carers' perceptions of causation or their views on the quality of service support. Qualitative interviews were carried out with twenty carers in two localities in the north of England with the aim of providing in‐depth contextualized data on their experiences over time, their attitudes towards cerebral palsy and their interactions with service provision.

Objective: This study examined the features of informal end-of-life care of older people living in the community and the association between informal care characteristics and dying at home. Methods: Retrospective data were obtained from interviews and self-administered questionnaires of 56 persons who had been primary caregivers of older relatives in the last three months of their lives. Results: Results showed that informal caregivers of terminally ill older people living in the community provided a considerable amount of personal, household, and management care.

The special carer grant has so far failed to live up to expectations, especially in targeting ethnic minority carers. David Hepworth outlines what more needs to be done to help these 'hidden carers'. 

There are around 6 million ‘informal carers’ in the UK. This series of 5 articles sets out to explain what informal caring is and how healthcare assistants and nurses can work with and meet the needs of a variety of informal carers in a variety of clinical and healthcare settings and environments. This short series will commence with a brief definition of what informal caring is, placing this short definition within a demographic framework.

We report findings on patients with stroke and carers experiences of the healthcare system in Scotland after stroke. These findings emerged from data collected in a primary qualitative study exploring patients with stroke and carers perception of a Functional Electrical Stimulation (FES) Clinic. Rich data emerged in relation to healthcare after stroke as experienced by both patients and carers, highlighting important clinically relevant messages and constituting an important area for dissemination. Thirteen patients with stroke and nine carers consented to participate.

The present study explored the difficulties experienced by carers of chronic fatigue syndrome (CFS) sufferers, their cognitions, and their efforts to accept the illness. Semi-structured interviews were conducted with 17 carers to study these issues, retrospectively, over three stages: before the diagnosis of CFS, shortly after the diagnosis, and at present. Surprisingly, the results suggested that carers, several of them absent from home during the day, felt that their lives were only minimally constrained by the illness.

As most terminal and palliative care is in the community, general practitioners (GPs) have an important role to play. This study presents bereaved carers' views of the palliative care provided by GPs. It suggests that symptom control may not be optimal.

The provision of home-based palliative care requires a substantial unpaid contribution from family and friends (i.e. informal care). The present cross-sectional descriptive study, conducted between September 2003 and April 2004, describes this contribution and the impact it has on those providing informal care. The participants were 82 informal carers of patients registered with two community palliative care services in Sydney, Australia (40% of eligible carers).