Exploring Perceptions
of Quality of Life
of Frail Older People During and After their
Transition to Institutional Care
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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 peopleās 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:
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To develop a new conceptualisation of QoL
in frail older age, giving a central place to the views
of frail older people.
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To develop innovative methods of
eliciting frail older people's views on the meaning of QoL. |
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To examine ways in which the transition
to institutional care affects QoL in frail older age. |
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To identify and explore inequalities
(by social class, gender, ethnicity) in experiences of QoL
during and after this transition. |
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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.