User views

In rural sub-Saharan Africa, most care for patients with AIDS is provided at home by relatives. Caring for those with AIDS is assumed to be a substantial burden, but little is known from the perspectives of those who provide the care. In this paper we use interviews with caregivers, supplemented with survey data from a larger study in rural Malawi, to investigate this issue.

Current government policy emphasises professional accountability, Best Value, evidence-based practice and outcomes for users and carers. In this context, being able to demonstrate the effectiveness of routine practice is increasingly important. This article considers the key issues in collecting information about the outcomes of equipment and adaptations. These include: the assessment of the full range of outcomes; the timing of data collection; the use of standardised and individualised measures; and linking outcomes to interventions.

The present paper presents a descriptive summary of the views and experiences of people with intellectual disabilities (IDs) as they have been represented in research and other literature. The authors develop further the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, a review report commissioned by the Department of Health on the views and experiences of users and family carers focusing on the ways in which research might contribute to policy and practice.

A short film aimed at carers which presents the story of two families and their experiences of person centred planning. The DVD also contains background information about person centred planning and contacts for further information.

Background: Individual assessment of needs has been recognised as the most appropriate way to allocate health and social care resources. These assessments, however, are often made by the staff or by a carer who acts as an advocate for the user themselves. Little is known about how these proxy measures compare to how individual patients perceive their own needs.

Aim: The aim of this study was to measure and compare ratings of need for older people with mental health problems by the older person themselves, their carer, and an appropriate staff member.

Capital is a user‐led training, consultancy and research organisation based in West Sussex. When the local mental health trust decided to evaluate its assertive outreach team, Capital bid to conduct a qualitative review through one‐to‐one interviews with the team's clients and their carers. In this candid article the project team members describe the process, the hurdles and obstacles they encountered, how they were negotiated or overcome, and what they learned from the experience.

Up to one and a half million people in Britain are involved in caring for a relative or friend with mental illness or dementia. Recent government policy has emphasised the needs of this particular group of carers, but effective support can be implemented only if managers and practitioners know what works.

Looks at the findings from a review of mental health carer support and the effectiveness of the services on offer. The review was carried out by the Social Policy Research Unit (SPRU) at the University of York.

In this second of two articles reporting on her research, Jenny Henderson argues that adequate support should be given to carers who wish to care for a person with end-stage dementia at home

Reports on an evaluation of the efforts of the Royal United Hospital (RUH) Bath to improve the support offered to people with dementia and their family carers. The intervention included the recruitment of three part-time dementia coordinators, a seven-day older adult mental health liaison service with nurses and a psychiatrist, additional staff training and an increased emphasis on arts and music in the wards.

This paper provides an account of how family carers were involved in a longitudinal research study that aimed to investigate the needs of ‘new’ family carers of stroke survivors. An account of how the researcher involved carers is provided, followed by one carer's description of the benefits and negative consequences of being involved in the study. Suggestions are made about how to develop good practice with regard to involving people in research. The conclusions highlight that, although rewarding, being involved in research is not without its challenges.