Part 1: Summary
and Introduction to the Study
Part 1: Summary and Introduction to the Study
1 Summary
1.1 Aim of the study
The aim of this study was to determine the information needs
of elderly, disabled elderly people, and their non-professional carers. The
study focused on the type of information that enables these groups of people to
access support at home in terms of advice, financial help, practical help, and
services. Such support can make their life at home easier, help them to
maintain independence and to participate actively in society.
1.2 Methods used
Three preliminary approaches were adopted to gathering
information:
·
a literature survey;
·
examination of data
on enquires made by elderly people to organisations that provide elderly and
disabled people with information and advice;
·
a series of focus
groups run with elderly, disabled elderly people, and their non-professional
carers as participants.
The findings of these preliminary investigations were used
in the development of questionnaires for a nationwide survey that aimed to
discover:
1. What support
and information elderly, disabled elderly people and their carers had.
2. What further
support they wanted to make life easier at home.
3. What
information they needed to give them access to this support.
4. How they preferred
to get this information.
Three groups of people were targeted for the survey:
·
disabled elderly
people attending Day Care Centres;
·
less frail elderly
people attending Lunch Clubs and Over 60s groups;
·
non-professional
carers of elderly people attending carers' support groups.
1.3 Findings
Of 5060 questionnaires sent out, 1936 completed
questionnaires were returned. For the questionnaire survey the sampling of
elderly people was restricted to the three specific groups described in Section
1.2, above. Therefore, it cannot be assumed that the survey results necessarily
represent the needs and problems of elderly people in the UK as a whole.
However, the results of the study are likely to be indicative of the needs and
problems of the three populations of interest (disabled elderly people, their
carers, and less frail elderly people), for the following reasons:
·
the large numbers of
respondents, particularly in the Day Care Centre and Social Club groups;
·
good consistency of
questionnaire answers between the three groups targeted;
·
good agreement of the
questionnaire survey results with information gathered by other methods in the
preliminary phases (literature survey, data on enquiries to information
providers and focus group investigation).
Overall, the findings of this study were disturbing in that
focus group and questionnaire survey participants were shown to have serious
problems in terms of getting the support and information they needed.
Substantial percentages of questionnaire respondents experienced difficulties
with routine tasks and with accessing the information and support they needed.
This is wholly unacceptable, given the associated implications for quality of
life and sense of well-being. To sum up, they need:
·
more and better
practical support with everyday tasks;
·
practical support
that is far more easily accessible when needed;
·
information on the
financial help, practical help, housing, products and home adaptations, support
and services at home that are available to them;
·
correct and up-to-date
information on the appropriate sources for support, practical help, information
and advice, given a particular need;
·
information that is
more easily accessible via the most preferred means (face-to-face contact with
other people) on a local basis.
The questionnaire survey showed that the Internet was the
most disliked means of getting information. This could be due to lack of
familiarity: an extremely small percentage of survey respondents used computers
or the Internet.
The results have important implications for formal sources
of support that provide practical help at home to elderly people and their
carers. To meet the needs of the three groups studied statutory (Social and
Health Services) and voluntary (charitable organisations) support providers
need to:
·
provide increased
practical support with everyday tasks;
·
make the practical
support much more easily accessible;
·
substantially
increase awareness of their existence and the types of support they provide,
through cooperation with information providers.
Those organisations that produce and provide information for
elderly people and their carers need to make extensive efforts to:
·
increase awareness of
their existence and the information they provide;
·
increase awareness of
the appropriate sources of information, advice and practical support, to
satisfy a particular need;
·
make information more
easily accessible by:
-
making it available
at locations where elderly, disabled elderly people, and their carers regularly
go, e.g. Day Care Centres, GPs surgeries, social clubs for elderly people,
carers' support centres;
-
communicating the
information by the most preferred means (face-to-face contact), using those
people who are in close and regular contact with the populations of interest.
·
ensure the
information is truly relevant to the needs of particular groups within the
elderly population.
The study identified a number of
important methodological issues concerning the use of elderly and disabled
elderly people as participants in focus groups and questionnaire surveys. These
issues were related to declines in various sensory, perceptual,
perceptual-motor, cognitive and communication abilities that are associated
with advancing age and which can affect the performance of elderly
participants. Further research into the needs of elderly people will need to
take these issues into account.
2 Introduction
There is a substantial amount of
information of varying quality currently available in a number of different
formats to elderly people and their carers to help them cope at home. This,
however, is not being readily and widely accessed by the people for whom it is
intended.
The information needs of elderly,
disabled elderly people, and their carers must be established, as must the most
acceptable method(s) of provision of this information. What these groups of
people want and what is acceptable to them should determine the criteria for
information provision. It is vital that these people are given the chance to
set the agenda, and that it is not imposed upon them. All too often so-called
experts make assumptions about what people need. The true experts on the
information needed by these people to enable them to live as they want to and
to participate in society, are the people themselves. It is necessary to explore
how elderly people live and what their day-to-day difficulties are, the support
and information that they and their carers already have and are aware of, what
further support and information they need, and how they would prefer to get the
information.
Increasingly, the responsibility rests
with elderly people and their families to:
·
seek information and
advice about health and social matters;
·
find out about their
entitlements in terms of money benefits and services;
·
choose and purchase
adaptations and equipment.
Otherwise they may go without.
It is the disadvantaged groups in
society that most need care, help and information. If disabled elderly people
and their carers possess the information they want, in a form that is easy to
understand and use and is delivered using methods that are acceptable to them,
they will be more independent and require less support from the health and
social services.
It is important to bear in mind that
the attitudes, preferences, needs, and use of services and sources of information
may be very different for the next generation of elderly people. Research gives
an indication of the information needs of elderly people only at the time that
the study was undertaken.
This study examines the information
needs of elderly, disabled elderly people, and their non-professional carers.
For the purposes of this study, "elderly people" are those aged 60 or
over.
'Information needs' has an extremely
broad meaning. This study was concerned with the type of information that
enables elderly, disabled elderly people and their carers to access support
that can help them to manage more easily at home, maintain their independence
for as long as possible, and to participate in society.
An extensive questionnaire survey was
used to gather information from three populations:
·
disabled
elderly living in their own homes who attend Day Care Centres;
·
less
frail elderly people living in their own homes who attend Lunch Clubs and Over
60s groups;
·
non-professional
carers of disabled elderly people who attend carers' support groups.
The aim of the survey was to answer
the questions:
1. What support
and information do elderly, disabled elderly people, and their carers have?
2. What further
support do they want to make life easier at home?
3. What
information do they need to give them access to this support?
4. How would they
prefer to get this information?
Preliminary to the survey, and to
render it more effective by identifying the major points that needed to be
covered in it, three approaches were adopted to gathering information:
·
a literature survey;
·
examination of data
on enquires made by elderly people to organisations that provide elderly and
disabled people with information and advice;
·
a series of focus
groups run with elderly, disabled elderly people and their non-professional
carers as participants.
The use of focus groups and surveys, a
combination of qualitative and quantitative methods, make a powerful tool for
obtaining information about how people think and feel.
Part 2 of this report contains the
literature survey, Parts 3-5 describe the Disability Information Trust studies,
Part 6 summarises and draws
conclusions from the results of the questionnaire survey, and Part 7 draws overall conclusions and discusses the implications for
the provision of support and information and for future research.
Part 2: Literature survey
Part 3: Enquiries to formal
information and advice providers
Part 4: Focus group investigation
Part 5: Questionnaire survey
Part 6: Summary and conclusions of the
questionnaire survey
Part 7: Overall discussion and
conclusions
Part 8: References
Part 9: Appendices
Each Part is divided into Chapters (1,
2, 3, etc.), which in turn are subdivided into Sections (1.1, 1.2, 1.3, etc.).