Information needs

This briefing provides an overview of the research literature on the barriers currently facing black and minority ethnic (BME) people in accessing dementia care services. It also looks at some of the ways in which services can become better at responding to the needs of (BME) people in their local area. The briefing begins by outlining the main issues and why it is important to address existing barriers.

The project was set up to improve the support offered to carers of people with serious mental health problems through supportive and educational group workshops. It aimed to empower carers by improving their understanding of mental health services and care; and to develop a model of carer and mentoring support. From the 15 carers recruited, five left due to personal circumstances leaving a core group of 10. The group also contained a high proportion of black and minority ethnic carers.

Unpaid carers provide the backbone for community care, supplying the everyday support and care to users which paid carers would otherwise have to provide. There is increasing political awareness about the need to support carers if the rhetoric of community care is to be a reality. Both research and policy documents emphasise the carer's need for information. Carers see the Primary Health Care Team as being pivotal in providing them with advice, support and information. This paper describes a study to identify carers in a general practice and to provide them with information.

The aim of this research was to develop a conceptual framework that would help to collect and understand the information needs of a target community. Even though many information behavior frameworks already exist, they tend to focus on different aspects of the person and their interaction with information. It was proposed that a synthesis of the existing frameworks could lead to one comprehensive framework. Previous research was analyzed and an initial framework defined.

Carers have a pressing need to be directed to good sources of information, help and support. NHS organisations appear to be consulting with carers much less than the level envisaged in the National Strategy for Carers. There is still too much poor or indifferent consultation practice and service providers appear not to be following known good practice guidelines. Over eight out of ten carers said that caring had a negative impact on their own health. Almost nine out of ten reported that they feel stress, anxiety, depression or loss of sleep, due to being a carer.

We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making.

Aims.  This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer.

Objectives: The aim of this review is to discuss how existing models of information behaviour may help to improve provision of information to carers of people with dementia. The article analyses existing models of information behaviour derived from information science, describes studies that have examined these models in relation to health and discusses ways in which they help to understand the information behaviours of carers of people with dementia.

Results of the UK’s largest ever survey of people with Parkinson’s and carers