Literature reviews

This article reports the findings of a literature review of research that has explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from recent research studies, about their own support. Having discussed the search strategy, definitions of challenging behaviour and mental health/illness are presented.

Primary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed.

This article reviews 19 studies (1987–2004) on quality of life for family caregivers helping those with chronic physical illness. Here we explore the concepts of and instruments used to measure caregivers' quality of life. We were particularly interested in understanding stress-related variables and documenting factors influencing quality of life based on family stress theory. Findings show that various positive and negative terms equated with quality of life were used to measure them.

Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system-wide information needed about family carers of adults with I/DD that would help improve the quality of service provided.

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.

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.

While discourse about care and caring is well developed in the UK, the nature of knowledge generation about care and the research paradigms that underpin it have been subjected to limited critical reflection and analysis. An overarching synthesis of evidence – intended to promote debate and facilitate new understandings – identifies two largely separate bodies of carer-related research.

The experiences of young adult carers (YACs) have been vastly under-researched, particularly within Australian caregiving literature. This article explores the existence, extent and nature of informal young adult caregiving in Australia, defining YACs as individuals aged between 18 and 25 years who provide unpaid care or support to family members living with chronic illness or disability.

Caring in Later Life is a review of the needs and roles of older carers (Milne et al, 2001). It brings together a wide‐ranging review of academic and policy literature with an original meta‐analysis of the 1995 General Household Survey (OPCS, 1995). This paper focuses on the findings of the GHS analysis. The picture of older carers that emerges is significantly different from that of carers overall.It is clear that older carers constitute a large and growing number of the carers and represent an increasingly large proportion of the total number of UK carers.