User-defined Outcomes of Community Care for Disabled Asian People

Dr Ayesha Vernon and Dr Mark Priestley

This was initially a one-year research project funded by a grant from the Joseph Rowntree Foundation (award number, not yet known), from October 1999 to September 2000, with co-funding from an ESRC fellowship award. In September 2000 the project researcher transfered to the University of Northumbria, where the work was completed.

Background

The NHS and Community Care Act (1990) emphasised the importance of meeting the health and social care needs of elderly and disabled people and their carers in ethnic minority communities. Community Care in the Next Decade and Beyond (DoH, 1990) identified the need for local authorities to make assessment procedures "accessible to people from black and minority ethnic backgrounds", and flagged up the need for some "services of a special type or kind (because) services geared to the requirements of the majority may not always be appropriate" (DoH, 1990: p.26). Subsequent practice guidance for managers and practitioners has been permeated with statements emphasising the importance of sensitivity to the diverse needs of different communities, through appropriate forms of information, assessment and care planning. Despite such overt rhetoric, the reality is that service provision continues to be largely euro-centric in nature.

Current understanding about the ways in which disabled people and their families from Asian communities wish to have their needs met is limited. Few studies have focused on the particular experience of service users from the Asian communities, although there has been an increasing amount of recent interest in this area. Although the number of studies assessing the incidence of impairment among black people has slowly grown over the last decade, much of this concentrates on the consequences of disability in old age. Consequently, research evidence on younger disabled people is relatively neglected.

At present there is much focus on measuring the outcomes of community care. This is reflected in Department of Health funded research on outcomes, based at the Social Policy Research Unit (SPRU) over the last few years. This has involved seeking the views of disabled and older service users. Whilst this work included a focus group of Asian elders in Bradford, the work on younger disabled people based in York attracted only one black ethnic minority service user (due to the relative lack of diversity in the local population). This project will seek to directly redress this imbalance.

Methods

The research was planned and implemented in collaboration with the Asian Disability Network and the Association of Blind Asians (two local user groups of disabled Asian people). The research was based in Leeds and Bradford, in order to target sampling in areas with significant Asian populations and to include people with a range of service experiences. Ayesha also liaised with responsible officers in the relevant social services departments in order to access policy documents, and to ensure that dissemination of the research influences local service providers.

The primary data collection involved a series of focus group meetings with local disabled Asian people, with the option of individual interviews if prefered. The meetings centred around the following topics: current and past experience of service provision and desired outcomes from community care; rights and responsibilities in relation to culturally sensitive service provision; recommendations for policy, practice and dissemination.