Research team

• Ms Susan Tester

• Professor Murna Downs

• Dr Gill Hubbard

• Ms Joan Murphy

Duration

January 2000 - December 2002

Contact

Ms Susan Tester
Department of Applied Social Science
University of Stirling
Stirling, FK9 4LA
Scotland

Tel: +44 (0)1786 467701
Email: susan.tester@stir.ac.uk

Background

The research focuses on the period of 'frail older age' which raises serious policy issues concerning quality of life (QoL), and the costs and provision of health and long-term care services for ageing populations. Ageing and later life have been perceived negatively in western societies. Ageism can affect policy and practice in caring for people at the end of their lives, especially in residential institutions.

Social gerontologists have encouraged more positive attitudes and images by challenging ageism, promoting positive identities and empowerment of older people. Recent approaches focus on the life course and key transitions in the context of a person's whole life, and on the diversity of experiences of different social groups and the effects of lifetime inequalities on the nature and experience of the ageing process. The promotion of active and productive ageing, however, is still mainly focused on prolonging the 'third age' while the 'fourth age' continues to be perceived negatively, without positive identities or images.

The research will contribute to developing a new conceptualisation of frail older age by focusing on QoL of older people in long-term institutional care, those whose QoL is most threatened by cumulative losses. There is agreement in the literature that QoL in institutional care is of concern. Yet little attempt has been made to explore residents' perspectives on QoL.

The definition and measurement of QoL have recently received considerable attention in UK and US; however, where frail older people are concerned, the results of such work remain unsatisfactory. Definitions and measures focus almost exclusively on medical health-related outcomes. Existing QoL measures lack comprehensiveness, reliability and validity when used with frail older people. There is little empirical research based on a multi-dimensional concept of QoL and on definitions by older people rather than professionals.

The research takes a qualitative approach to explore frail older people's definition and experience of QoL. It gives priority to eliciting views of frail older people on QoL and their subjective lived experiences, focusing on differences and inequalities by social class, gender and ethnicity within the 'fourth age'.

Aims and objectives

The main aim of the research is to contribute to understanding of the meaning of QoL for frail older people, from the perspectives of older people themselves.

The research has five main objectives:

• To develop a new conceptualisation of QoL in frail older age, giving a central place to the views of frail older people.

• To develop innovative methods of eliciting frail older people's views on the meaning of QoL.

• To examine ways in which the transition to institutional care affects QoL in frail older age.

• To identify and explore inequalities (by social class, gender, ethnicity) in experiences of QoL during and after this transition.

• To examine links between QoL in institutional care and quality of care from the perspective of frail older people.

Study design

The study focuses on people who have recently entered long-term nursing home care from the community; the case study settings, nursing homes, will be selected in two areas. The research takes an ethnographic approach. It uses a range of complementary methods, allowing for triangulation of methods and data and including innovative methods of eliciting views of frail older people with whom communication is difficult. In the preliminary stages of the study group discussions will be held with groups of frail older people and of carers. General observation of frail older residents will be conducted in six sample settings.

The main fieldwork will be undertaken with a sample of approximately 60 frail older people who have entered nursing home care in the previous 3-6 months, who have completed the immediate transition stage, but, if not cognitively impaired, will be able to recall perceptions of the period during and after the transition.

Two half-day sessions will be held with each individual. To elicit the views of frail older people the first session will include a guided conversation, in which discussions will be aided by the use of Talking Mats (TM), a tool developed by the Alternative and Augmentative Communication research team, University of Stirling. The second half-day session with each participant will consist of individual observation which will take place within two weeks after the TM guided conversations. A researcher will accompany the older person, spend time with her/him and engage in informal conversation, following up issues raised in the TM session.

Policy implications

The research will provide a focus for debate and wide dissemination of the insights gained, in order to increase knowledge about frail older people.

The findings on transition to institutional care will inform policy and practice, in order to maintain or enhance QoL for future residents.

The findings on inequalities in experience of QoL during and after transition to institutional care will contribute to planning effective and appropriate services; to improving individualised care, appropriate to the needs of specific groups in the population; and, in the longer term, to reducing inequalities in QoL of frail older people.

The findings on links between QoL and quality of care will contribute to policy and practice on institutional care; to cultures of care which promote QoL through quality of care; to the training of service providers and practitioners; to assessing outcomes and raising standards of care; and to empowering older residents and improving their QoL.

A version of Talking Mats will be produced specifically for use by care workers and informal carers in discussing QoL with frail older people.