Part 5: Questionnaire Survey 89

1 Introduction_ 89

1.1 What are questionnaires? 90

1.2 Question types 90

1.3 Reliability and Validity 91

1.4 Strengths and weaknesses of postal questionnaires 91

2 Effects of ageing on various abilities: implications for questionnaire design_ 92

2.1 Perception, comprehension and memory of printed material 92

2.2 Sustaining attention and performance 94

2.3 Performance and task complexity 94

3 Aim of questionnaire survey_ 94

4 Method_ 95

4.1 Design of questionnaires 95

4.2 Questionnaire recipients 96

4.3 Pilot tests 98

4.4 Procedure 99

4.5 Instructions and "Questionnaire Record Table" 101

4.6 Notes on the sampling method_ 102

5 Questionnaire Returns 102

5.1 Return rates 102

5.2 Methodological Issues 103

6 Results: Day Care Centre clients 105

6.1 Age and gender of respondents 106

6.2 Living alone 109

6.3 Wheelchair use 110

6.4 Difficult tasks 110

6.5 Biggest problem_ 112

6.6 Help with impossible tasks 112

6.7 Formal information and advice providers: awareness and use 113

6.8 Knowledge of where to get help_ 115

6.9 Information wanted_ 116

6.10 Preferred means of getting information 117

6.11 A printed publication 117

6.12 Computer and Internet use 118

6.13 Preferred term_ 118

6.14 Help to complete questionnaire 118

7 Results: Social Club members 119

7.1 Age and gender of respondents 119

7.2 Living alone 121

7.3 Wheelchair use 121

7.4 Difficult tasks 121

7.5 Biggest problem_ 121

7.6 Help with impossible tasks 123

7.7 Formal information and advice providers: awareness and use 123

7.8 Knowledge of where to get help_ 125

7.9 Information wanted_ 126

7.10 Preferred means of getting information 127

7.11 A printed publication 127

7.12 Computer and Internet use 128

7.13 Preferred term_ 128

7.14 Help to complete questionnaire 128

8 Results: Carers 129

8.1 Age and gender of respondents (carers) 129

8.2 Age and gender of the people cared for 130

8.3 Living arrangements and relationship_ 131

8.4 Wheelchair use 131

8.5 Difficult tasks 133

8.6 Biggest problem_ 133

8.7 Help with difficult tasks 133

8.8 Formal information and advice providers: awareness and use 134

8.9 Knowledge of where to get help_ 136

8.10 Information wanted_ 137

8.11 Preferred means of getting information 138

8.12 A printed publication 138

8.13 Computer and Internet use 139

8.14 Preferred term_ 139

Part 5: Questionnaire Survey

 


1 Introduction

 

Before describing how the questionnaire survey was carried out, this introductory Chapter provides some background information on questionnaires and their use. The implications of age-related declines in ability for using elderly questionnaire respondents are examined in Chapter 2. The description of the Disability Information Trust questionnaire survey begins with Chapter 3. The summary and conclusions of the questionnaire survey are given in Part 6 of the report.

 

Design principles for questionnaires are well documented (e.g. Oppenheim, 1992; Converse & Presser, 1986). However, recommendations for design of questionnaires intended for elderly (and disabled elderly) people are lacking. There are, however, some recommendations for the design of printed material for elderly readers. These are described in Section 2.1 in this part of the report.

 

1.1 What are questionnaires?

Questionnaires are printed lists of questions used to find out what people think or feel about an issue, product or service. They can be filled in away from the researcher in the form of a self-administered, group-administered or postal questionnaire. The term 'questionnaire' is also often used to describe a set of questions administered face-to-face or by telephone in the form of a structured interview (Oppenheim, 1992). The function of a questionnaire is measurement (Oppenheim, 1992). What a questionnaire measures depends on the issues under investigation, the aims of the study, and the research design (Oppenheim, 1992).

 

1.2 Question types

Questionnaires can provide quantitative data using closed (or fixed-response) questions, where the respondent is presented with a number of alternative responses to a question and asked to mark the one that they feel is most appropriate (Jordan, 1998; Oppenheim, 1992). Qualitative data can be gathered using open (or free-response) questions to which respondents are asked to write their own answer (Jordan, 1998; Oppenheim, 1992). Closed questions have been criticised for forcing people to choose their answer from the alternatives provided rather than answering in their own words (Converse & Presser, 1986). However, closed questions are more specific than open ones, communicate the same frame of reference to all respondents, and well designed response categories can more accurately detect differences among respondents (Converse & Presser, 1986). One argument against closed questions is that they may fail to provide an appropriate set of responses that are meaningful in substance or wording to respondents (Schuman & Presser, 1996). However, questionnaire design should begin with open questions in pilot or pre-test work (Schuman & Presser, 1996), such as the preliminary focus group investigation carried out in the present study (see Part 4). These pre-test results can then be used to create appropriate sets of responses for closed questions. Using open follow-up questions as probes of key closed questions can combine the advantages of both open and closed questions (Converse & Presser, 1986).

 

1.3 Reliability and Validity

When designing fixed-response questionnaires it is important to be aware of the issues of reliability and validity Very broadly, reliability is concerned with the repeatability of what the questionnaire measures and validity refers to whether or not a questionnaire measures what it is supposed to (Jordan, 1998). As described in Part 4 (Section 1.6) of this report, the validity of a questionnaire can be improved by basing it on the qualitative data gathered using focus groups on the topics of research interest.

 

1.4 Strengths and weaknesses of postal questionnaires

Postal questionnaires can be a cheap and effective method for gathering data from a large number of widely dispersed people (Jordan, 1998; Oppenheim, 1992). Another strength is that, because the researcher is not present while the respondents make their answers, data collected using questionnaires is free of any investigator effects (Jordan, 1998; Oppenheim, 1992). That is, the respondents cannot be influenced by the researcher and will not, consciously or unconsciously, try to answer in the way that they think the researcher wants them to.

 

The weaknesses of postal questionnaires are related to the fact that they may be filled in away from the researcher. This means that the respondents do not have the chance to ask the researcher about anything that is unclear, as they do in interviews or focus groups (Jordan, 1998). Hence, careful design of the questions is needed incorporating the gathering of preliminary information from a sample of the target population, for example using focus groups, and pilot testing of the questionnaire. In addition, the researcher has no control over how the questionnaire is answered: the respondent may answer the questions in the wrong order; answer questions incompletely; miss out questions or whole sections; or pass the questionnaire onto others (Oppenheim, 1992).

 

Although a large number of questionnaires can be sent out by post, because they are filled in away from the researcher, only a small proportion tend to be completed and returned. Jordan (1998) quotes a return rate of around 25%. The reason why this is a weakness of questionnaire based research is that the people who actually take the time and effort to complete the questionnaire and return it may not be representative of the population in whom the researcher is interested (Jordan, 1998).

 

Return rates are likely to be lower the more time and effort it takes to complete a questionnaire. Therefore, there is an advantage to keeping questionnaires as short and concise as possible (Jordan, 1998).

 

2 Effects of ageing on various abilities: implications for questionnaire design

 

There are a number of sensory, perceptual and cognitive effects of ageing, described in Part 2 (Section 7.2) of this report, that have implications for the wording and design of questionnaires intended for elderly recipients. These implications are examined below.

 

2.1 Perception, comprehension and memory of printed material

When preparing printed material intended for elderly people it is important to consider not only the content but also the way it is presented. Morrell and Echt (1997) proposed that it may be possible to compensate for normal age-related losses in vision through text design. Since loss of visual acuity is the primary reason for the decrement in visual performance, typographical details, such as size, style and arrangement, should be considered when designing printed materials for use by elderly people. In addition, the loss of contrast sensitivity with age implies that increasing the contrast between text (or diagrams) and the background will make it easier for elderly people to detect (Morrell & Echt, 1997).

 

Age-related declines in spatial abilities, focused attention and information processing in working memory also have important implications. Thus, it is vital to consider guideline on designing printed materials to reduce demands on these perceptual and cognitive abilities, thereby improving legibility and understanding for elderly readers.

 

A few studies have recommended certain typographical characteristics that benefit perception, comprehension and memory of printed material in older people (Hartley, 1994; Morrell & Echt, 1997). These include:

        using a large type size of 12-14 point;

        using a sans-serif typeface (without finishing strokes at the ends of letters, e.g. Helvetica, Arial) as opposed to serif (with finishing strokes at the ends of the letters) or novelty typefaces;

        clarifying the structure of the text, e.g. by using spacing, headings, summaries, numbering, etc.;

        using proper application of directive cues, e.g. bold type, underlining and italics, to call attention to key words, phrases or sections of text;

        avoiding use of all capitals in body text;

        using clear layouts, organising the material in a standard format (e.g. small, discrete segments);

        using simple language;

        avoiding negatives and inferences;

        phrasing text in the active rather than the passive voice.

 

There has been much argument over whether text should be left and right justified (all lines are made an equal length by varying the spacing between words) or just left justified (word spacing is consistent and line endings are ragged). It seems that there is little difference between fully justified and left justified text in terms of legibility, reading speed or comprehension (Hartley, 1994). However, Hartley (1994) argues that there are indications that left justified text might be more helpful for less able readers, be they young children or elderly people.

 

The use of illustrations and diagrams can aid motivation, attention, comprehension, instruction and recall in younger adults (Hartley, 1994; Morrell & Echt, 1997). A variety of studies have shown that the addition of illustrations to written instructions facilitates performance, as compared to text alone, for children and young adults. Only one study has included a group of older adults (Morrell and Park, 1993) and this found better performance for instructions composed of text and illustrations, than for text alone or illustrations alone.

 

2.2 Sustaining attention and performance

Difficulties with sustaining attention and performance indicate that a questionnaire intended for elderly recipients should be designed so that it does not take too long to complete. As with focus groups, careful design of the questions is needed to ensure that the information the researchers seek can be gathered with as few questions as possible.

 

No recommendations exist on the length of time a questionnaire should take to complete for elderly respondents. However, as Oppenheim (1992) notes, a person's perception of whether a questionnaire is too long is influenced by factors such as how interested they are in the topic and whether a pre-paid return envelope is provided.

 

2.3 Performance and task complexity

Older people are inordinately affected by increases in task complexity. In a study that uses elderly people as subjects it therefore makes sense to keep things simple. As with focus groups, this means keeping questions simple and short, using words that the intended recipients understand and limiting the questions to a single dimension. Avoiding questions such as If your answer was "no", then go to question 10 could also simplify the task of filling in a questionnaire. The questionnaires should be pilot tested on people similar to the target recipients for ease of reading and understanding before they are used in a survey.

 

3 Aim of questionnaire survey

 

Following the findings of the focus group investigation, the aim of this study was broadened. In particular, the findings showed that a printed publication may not be the most suitable method for delivering information to elderly, disabled elderly people and their carers about the various forms of support available to them.

 

Thus, a national survey was carried out 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?

 

4 Method

 

4.1 Design of questionnaires

The questionnaire for each group of recipients was designed according to the following principles:

        the areas and items covered by the questions should be determined by the findings of the focus group investigation (see Part 4);

        the design should follow recommendations for the design of printed materials for use by elderly people;

        the wording of the questions should be simple and also determined by the findings of the focus group investigation;

        it should not take too long for the recipients to complete the questionnaires.

 

The survey questions were designed to determine, for elderly, disabled elderly people and their carers:

        the most common day-to-day problems experienced;

        who they went to for help and advice;

        the sources of information they were aware of;

        the areas of information they were knowledgeable about;

        whether they had all the information and practical help they wanted;

        the matters that they wanted more information on;

        where and how they preferred to get this information.

 

It was decided not to gather information on specific disabilities, illnesses or health problems, but rather the day-to-day problems experienced generally as a consequence of disability or ill health.

 

4.2 Questionnaire recipients

The survey was used to gather information from three populations: disabled elderly people living in their own homes; less frail elderly people living in their own homes; and carers of disabled elderly people. To achieve this, three groups of people were targeted to receive questionnaires:

        clients of Day Care Centres for elderly people (elderly people who have a physical or sensory disability);

        members of Social Clubs for elderly people (less frail elderly people);

        members of Carers' Support Centres attending support groups (non-professional carers of disabled elderly people).

 

In this study 'elderly' or 'oIder' refers to people aged 60 or over.

 

Day Care Centre clients: An elderly client of a Social Services Day Care Centre has been referred by a social worker who has determined that the elderly person has a physical or sensory disability. At Age Concern Day Care Centres self referral and family referral also operate. Thus, in these centres, the clients may be depressed or socially isolated elderly people as well as disabled elderly people.

 

Social Club members: In Over 60s Clubs, elderly people get together, usually for the afternoon one a day week, at a local community centre or Day Care Centre and various activities are organised. At Lunch Clubs lunch is provided and other activities may or may not take place. Age Concern may have some involvement with such groups. For example, in Oxford, at the time of the survey, Age Concern provided transport to and from the local club clubs. A volunteer, usually one of the elderly members, organises a club.

 

Elderly people attending such groups can be considered, on the whole, to be less frail, more active and more mobile than those attending Day Care Centres, as they have not been determined by Social Services as having a disability. However, this does not necessarily mean that they do not have disabilities, rather that they have not had their needs assessed by Social Services or they have been assessed and found not to need the support of a Day Care Centre. They may, however, be receiving some form of home help. The fact that elderly people attending Social clubs may be disabled means that the distinction between this group of questionnaire recipients and the Day Care Centre group is not clear. Even so, it was expected that the survey would show that this group experiences fewer difficulties with day-to-day tasks and needs less practical help than the Day Care Centre group. However, Social Club members may be expected to have greater difficulties accessing the help and information they want because they do not have the close and regular contact with Health and Social Services that Day Care Centre clients have.

 

Non-professional carers: Local branches of the Carers' National Association are usually charitable organisations assisted by funding from Social Services and local authorities. Such Carers' Centres provide information, advice and emotional support for carers in their area. They usually run regular support groups where members can meet and discuss their problems, exchange ideas and get advice from each other and staff from the centre. These may be held at the centre or at various locations in the area covered by the centre. These meetings usually take the form of a "coffee morning" once a month, but can be more frequent. Support groups may be assisted by Social Services, which can, for example, provide transport to and from the meeting, a site for the meeting, and respite care for the duration of the meeting. For other groups, the carers have to make their own arrangements for the people they care for to be looked after while the meeting takes place or, as is more often the case, they bring the person they care for along to the meeting. Carers' Centres typically have several hundred members, only a small proportion of whom attend and benefit from support groups.

 

The fact that the carers targeted to receive questionnaires attended support groups, and taking into account the results of the carers' focus group (see Chapter 6, Part 4), it was expected that the carers group would be relatively well supported in terms of practical help and information.

 

4.3 Pilot tests

To ensure that the questionnaire design, accompanying documentation (see Section 4.5, below), and survey procedures worked with the three target populations, pilot test were carried out with a small sample of people from each of the populations. Changes were made to the questionnaires according to any problems identified in the pilot tests. The wording of the questions was different for the questionnaire intended for carers, although the questions dealt with the same aspects of support and information, in order to elicit information on the problems experienced by the carers themselves in helping the elderly person they cared for.

 

The pilot test questionnaires were given to and left with the managers of two Day Care Centres, the leader of an Over 60s Club and the person running the a carers' support group, to administer according to the instructions, as would be the case in the full survey. They were told that the researcher would return to collect the questionnaires and to ask questions to determine any problems experienced by the respondents and themselves.

 

Answering the questions required mainly a "Yes" or "No" response by putting a tick in a box. Initially the pilot testing was carried out with the disabled elderly clients of two Day Care Centres. The managers of the Day Care Centres were given 10 questionnaires to administer. Two forms of the questionnaire were tested. One centre received the questionnaire with the "Yes / No" response boxes in the same configuration throughout, "Yes" on the left, "No" on the right (9 were administered and completed). The other centre received the questionnaire in which the configuration of the "Yes / No" boxes was alternated at random (4 were administered and completed). It was found that the randomised questionnaire did not cause the recipients any confusion. Therefore, it was this randomised design that was further pilot tested with 15 members of an Over 60s club (13 were administered and completed) and 10 carers (4 were administered and completed).

 

In the case of the questionnaire for carers, the question "Where needed, can you easily help the person you care for to:" was followed by a list of tasks with three possible response boxes: "Yes", "No", and "Not needed". The response "Not needed " was included as it may have been the case that the disabled elderly person being cared for did not in fact need help with particular tasks. Following the pilot test, this design of fixed responses was used for certain questions in the final questionnaire.

 

The resulting questionnaire designs are given in Appendices E, F and G.

 

4.4 Procedure

The questionnaires were sent out in batches to Day Care Centres and Carers' Centres scattered throughout the UK and Social Clubs scattered throughout England. The addresses and phone numbers of Day Care Centres were obtained by searching ThomWeb (Thompson directory for the UK web site) and obtaining lists of centres in different regions of the UK. A list of Carers' Centres throughout the UK was obtained from the head office of the Carers National Association (CNA). The CNA has a network of local carers' support centres and organisations. For Social Clubs, a list of Age Concern branches was obtained from the head office of Age Concern England. The local Age Concern Centres were then contacted individually for lists of Lunch Clubs and Over 60s Clubs in their area.

 

The managers of Day Care Centres and Carers' Centres and the leaders of Social Clubs were contacted by telephone to ascertain whether they were willing to participate in the study and how many questionnaires they could administer. They were then sent the number of questionnaires that they had agreed to receive. The total number of questionnaires sent out to each group was:

Day Care Centres 1809

Social Clubs 1800

Carers Centres 1451

 

For administrative reasons the sending out of the batches of questionnaires and accompanying documentation (see Section 4.5, below) to the three different groups was phased. They were initially sent to Day Care Centres, followed by Carers' Centres, then Social Clubs. As the returned questionnaires came in from the Day Care Centres it became apparent that, despite pilot testing, a minority of respondents were completing a few particular questions incorrectly. Consequently, slight changes were made to the questionnaires for the Social Clubs and Carers Centres in order to avoid these problems occurring with these groups (see Section 5.1, below).

 

Day Care Centre managers and Social Club leaders were given a deadline to return the questionnaires three weeks after the date that they were sent out. The Carers' Centre managers were given one month, as most carers' support groups met only once a month. To increase the likelihood of the questionnaires being returned, and to ensure a reasonable return rate, the people concerned were telephoned a few days before a deadline to remind them to return the questionnaires, and again after a deadline had passed.

 

4.5 Instructions and "Questionnaire Record Table"

Accompanying each batch of questionnaires was a letter to the Day Care Centre manager, Carers Centre manager and Social Club leader. These letters explained the purpose of the questionnaire study, gave the deadline for return of the questionnaires and contained specific instructions on administering the questionnaires. For Day Care Centres the instructions explained how to make a random selection from the list of centre clients to determine questionnaire recipients, and how to fill in the Questionnaire Record Table (see below). In addition, if a questionnaire recipient required help to fill it in, the letter requested that a member of staff provide this help while ensuring that they give the recipients answers to the questions and not their own interpretation.

 

The Social Club leaders (elderly volunteers) were instructed to hand out questionnaires to everyone present at their next meeting and how to fill in the Questionnaire Record Table (see below). As with the Day Care Centre managers, Social Club leaders where asked to provide help with filling in questionnaires, if needed.

 

The majority of carers' support groups met only once a month and contained small numbers of carers. Thus, the Carers' Centre managers were instructed in their letter to give the questionnaires to carers of elderly people (people aged 60 or over) present at the next group meeting, ask them to complete them and return them before leaving the meeting. It was assumed that the carers would not require help completing the questionnaire. For these reasons, the Carers' Centre managers did not receive a Questionnaire Record Table to fill in.

 

Questionnaire Record Table

The Questionnaire Record Table (see Appendices C and D) enabled the Day Care Centre staff and Social Club leaders to keep track of the questionnaires that they had given out. Its main purpose, however, was to provide information on:

        whether a questionnaire recipient needed help to complete it (from a member of staff / the club leader), or did not complete it;

        the reasons why the individual needed help or did not complete the questionnaire.

 

4.6 Notes on the sampling method

The questionnaire recipients were sampled from three specific groups of the population. Disabled elderly people who lived in their own homes were sampled from those attending Day Care Centres. Less frail, more active and more mobile elderly people were sampled from those attending social clubs for older people. Carers were sampled from members of Carers' Centres who attend the support groups.

 

Restricting the samples to these three groups is not an ideal sampling technique. The samples, and thus the findings of the survey, were almost certainly not fully representative of elderly people as a whole in the UK. They were also possibly not representative of the populations of disabled elderly people, their carers, and less frail elderly people in the UK. Nevertheless, the findings should be indicative of the needs and problems of these three populations.

 

5 Questionnaire Returns

 

5.1 Return rates

Of 5060 questionnaires sent out, 1936 completed questionnaires were returned. Return rates were as follows:

Day Care Centres: 658 (58%)

Social Clubs: 976 (57%)

Carers' Centres: 302 (23%)

 

From information contained in the Questionnaire Record Tables (completed by the Day Care Centre managers and Social Club leaders) and letters accompanying the returned questionnaires from the Carers' Centre managers it was apparent that, in some cases, the number of questionnaires administered was less than the number sent in a batch. Thus, where the information was available, it was possible to determine the number actually given out for a particular batch. The percentage return rates given above were calculated from the estimated total number of questionnaires actually administered for each of the three groups.

 

While the managers and group leaders were very helpful in agreeing to cooperate it appears that this shortfall in the number of questionnaires administered was due to them being a little over optimistic concerning the number of questionnaires they felt they could handle.

 

The Day Care Centre managers, Social Club leaders and Carers' Centre managers who returned questionnaires were sent a letter thanking them for their cooperation.

 

5.2 Methodological Issues

More than one answer

Problems with the returned Day Care Centre questionnaire, which resulted in changes being made to the Social Club questionnaire and the Carers' Centre questionnaire mainly involved respondents giving more information than they were asked for in a question.

 

a.      Following the question on ease of performing various tasks, Day Care Centre respondents were asked, Of these, which is your biggest problem? (question 38 in Appendix E). One hundred of these respondents (15%) wrote more than one problem in and around the box provided. The greatest number of problems given was four (by three respondents). The question was changed, for the Social Club and Carers' questionnaires to Referring to the tasks above, for those that you answered "No", which is your one biggest problem?. This did not solve the problem: 66 (7%) Social Club members and 36 (12%) of carers gave more than one biggest problem.

 

b.      Following the questions to ascertain Day Care Centre clients' awareness of information and advice providing organisations, respondents were asked: Have you ever had any useful help from any of these? (question 63 in Appendix E). Occasionally a respondent who had answered "Yes" would write the name of an organisation, although this was not required. To enable Social Club and Carers' Centre respondents to provide this information if they wished, the question If "Yes", which has been the most useful to you? was added. A very small number of respondents (6, or less than 1%, Social Club members and 17, or 6%, carers) gave more than one answer for this additional question.

 

c.      The questions From where would you like to get information, and What do you like to be called? (Which term do you prefer for the person you care for? in the case of the carers' questionnaire) offered a number of alternative responses. Respondents in all three groups were asked to tick the ONE you like best for these questions. Nevertheless, some respondents ticked more than one answer. Eighteen per cent of all respondents gave more than one answer for From where would you like to get information and 6 per cent of all respondents gave more than one answer for What do you like to be called? / Which term do you prefer for the person you care for?

 

For all of the questions mentioned in the cases above, the decision was made to allow multiple answers in the frequency analyses given in the Results Chapters in this part of the report (Chapters 6, 7 and 8). Relative frequencies are thus given in terms of percentage of responses, as opposed to percentage of respondents.

 

Questionnaire returns

The questionnaire return rates for the Day Care Centres and Social Clubs, both almost 60 per cent, were better than would be expected for postal questionnaires (see Section 1.4 in this part of the report). This was probably due to the method of sampling questionnaire recipients and of administering the questionnaires. Questionnaires were not sent out to a random sample of elderly and elderly disabled people at their home addresses, but to a random sample of Social Clubs for elderly people and Day Care Centres for disabled elderly people. It will be recalled from Section 4.4 in this part of the report that the Day Care Centre staff and Social Club leaders were responsible for administering and returning questionnaires. A pre-paid envelope was provided to return the completed questionnaires in. In addition, these people had been contacted by telephone beforehand and had agreed to perform these tasks. It is likely that all these facts played a part it giving a higher questionnaire return rate than would be expected if the questionnaires were sent out to people at widely dispersed addresses.

 

Although the Carers' questionnaires were also sent out in batches for the centre managers to administer, the return rate was much lower. The reason for this may be because, they experienced particular problems with handling the questionnaires as agreed. They were asked to give the questionnaires to all the carers of elderly people at the next carers' support group meeting, for the carers to complete and hand back before leaving the meeting. The managers were provided with a pre-paid envelope to return the completed questionnaires. However, for 21 of the centres, questionnaires were being returned individually well after the deadline, implying that they had been handed out to carers at the meeting who then took them away to complete in their own time and return themselves. The nature of caring means that carers have very little spare time. Needless to say, the return rates for these 21 centres, where individuals were returning questionnaires, were very low. Again, due to the nature of caring, carers' support group meetings tend to be held infrequently and consist of a small and varying number of carers who try to fit as much as they can into a short meeting. When the time came to administer the questionnaires, the 21 centres possibly had more important things to do in their meetings than spend time filling in questionnaires. This assumption is supported by the fact that, for centres that administered and returned the questionnaires according to instructions, the most common reasons given for low return rates were small attendance at meetings, followed by lack of time and lack of interest or willingness from members.

 

6 Results: Day Care Centre clients

 

The number of questionnaires returned for this group was 658 (58% return rate, see Part 5, Section 5.1). For the following results, percentages were calculated using the total number of people that responded to a question (i.e., missing responses were excluded), unless otherwise stated. The questionnaire for this group is given in Appendix E.

6.1 Age and gender of respondents


The age distribution of the Day Care Centre clients who responded is given in Figure 6. It can be seen that the most frequently occurring age groups were 76-80 and 81-85. The young elderly (age 60-65) and very old (over age 90) were the smallest groups. This pattern may be expected as Day Care Centre clients are disabled and the likelihood of having a long-standing illness or disability (see Part 2, Section 2.1) increases with age, so we can expect a rise in the number of clients with increasing age until the number begins to fall due to death.

 


Using Office for National Statistics 1997 UK population data (Office for National Statistics, 1999), it is possible to determine the percentage of people aged 60 and over in each of the age groups as used in the survey (ONS figures go up to age 89). The resulting age distribution for elderly people in the UK, shown in Figure 7, indicates a steady decline in numbers with age from age 60 upwards. By comparison, this is not the pattern seen for the Day Care Centre respondents, for reasons that have already been suggested.



 


Males formed 25 per cent of Day Care Centre respondents and females 75 per cent. That is, for every man there were three women. Table 1 shows the percentage of males and females in the different age groups.

 

Table 1: Percentage of male and female Day Care Centre respondents in each age group.

Age group

 

60-65

 

66-70

 

71-75

 

76-80

 

81-85

 

86-90

 

Over 90

All groups

% male

54

40

28

23

20

15

13

25

% female

46

60

72

77

80

85

87

75

 

It can be seen that the percentage of female Day Care Centre respondents increased with age. National figures also show that as they get older, women increasingly outnumber men (Office for National Statistics, 1999).

 

Using the 1997 Office for National Statistics (ONS) UK population data, categorised by age and gender, it is possible to calculate the percentage of males and females in each age group. A comparison can then be made with the figures for the survey respondents, as shown in Table 2.

 

Table 2: Percentage of male and female respondents, comparison with national figures.

 

ONS 1997 figures*

Day Care Centre respondents

Age group

% male

% female

% male

% female

60-70

48

52

43

57

71-80

41

59

25

75

81-90+*

31

69

18

82

All groups

43

57

25

75

* ONS figures go up to age 89.

 

It can been seen from Table 2 that there was a greater percentage of female Day Care Centre respondents than there are nationally and this becomes more evident with increasing age. This could be because the percentage of females in Day Care Centres in general is greater than the percentage of females nationally, particularly for the older elderly. The majority of Day Care Centre clients have a sensory or physical disability. Data collected in the 1995 Health Survey for England (Department of Health, 1998) indicated that the percentage of females aged 85 and over reporting a serious disability was 41 per cent, compared to 25 per cent of males aged 85 and over. Thus, among the oldest old, proportionally more women have a serious disability than do men and this is reflected in the numbers of male and female clients in Day Care Centres.

 

6.2 Living alone

Of the Day Care Centre clients that responded, 66 per cent lived alone. The percentage living alone increased with increasing age.

 

6.3 Wheelchair use

Of those that responded, 6 per cent said they used a wheelchair all day, 26 per cent said they used it part of the day and 68 per cent said they never used a wheelchair.

 

6.4 Difficult tasks

It can be seen from Figure 8 that the task most widely reported as difficult by the Day Care Centre respondents was gardening, with 82 per cent saying that they could not garden easily by themselves. Other tasks found difficult by over 50% of respondents were: "hang out laundry"; "use public transport", "take a bath"; "go shopping"; "clean the house"; "get to the chemist; "do the laundry"; "get to hospital".

 

It should be noted that 50 per cent is an arbitrary cut-off point, used to indicate those tasks most frequently found difficult. What can be considered to be an acceptable percentage of people experiencing problems? This issue arises repeatedly and will be discussed later on in Part 7 (Section 2.3) of the report.

 

It is also important to remember that, invariably, respondents had multiple difficulties. Thus, for each task, shown in Figure 8, that caused respondents problems, it is unlikely that this is the only task that they experienced difficulties with.

 

The task that caused the least problems was keeping warm indoors, with only 3 per cent of respondents finding this difficult.

 



 


6.5 Biggest problem

The previous Section (6.4) was concerned with the frequency, in terms of number of respondents, with which difficulties were experienced for different day-to-day tasks. This Section examines the severity of these difficulties.

 

Respondents where asked to write down their biggest problem (of those tasks in the previous question, as shown in Figure 8). Of the 658 respondents 419 gave an answer, sometimes more than one. Allowing multiple answers, the task most often given as the biggest problem was getting around outdoors (19% of responses). This was followed by:

1.    "read labels" and "see to read", each with 8% of responses

2.    "go shopping" and "walk up stairs", each with 7% of responses

3.    "walk around the house" and "take a bath", each with 6% of responses.

 

All other tasks given as the biggest problem were named on less than 5 per cent of occasions.

 

6.6 Help with impossible tasks

The majority of Day Care Centre respondents (76%) felt that they got enough help with the things that they were unable to do. However, 24 per cent did not.

 

It can be seen from Figure 9 that, of the sources of help named in the questionnaire, most help with day-to-day tasks was received from Social Services and the family Doctor (59% of respondents said that they had help from each of these). This is not surprising as the majority of Day Care Centre clients had been diagnosed as having a disability by Social Services and could therefore be expected to have a high level of contact with Social and Health Services staff.



 


For the follow-up question, the majority of respondents (70%) said that they easily got all the help they wanted. However, 30 per cent did not.

 

6.7 Formal information and advice providers: awareness and use

Respondents' awareness of the various information and advice providing organisations available to them can be ascertained from Figure 10. Overall, there seems to be little awareness of almost all the organisations named in the questionnaire, with 13 out of the 17 organisations unknown to more than 70 per cent of respondents. The best known organisation was Age Concern (95% of respondents had heard of it), followed by Help the Aged (66%), RNIB (59%) and RNID (46%). The remaining organisations were unknown to over 70 per cent of respondents.


 


When asked whether they had ever had useful help from any of these information and advice providers, 44 per cent of respondents responded that they had. However, 56 per cent had not.


6.8 Knowledge of where to get help


Forty two percent of respondents said that they had needed help and did not know whom to contact to get it.

 


The questionnaire examined the respondents' knowledge of various topics in which they may have information needs (see Figure 11). They were most knowledgeable about where to get help with pensions (80% of respondents said they knew where to get help). They were least knowledgeable about where to get help with looking after someone else (78% did not know), followed by financial help to stay at home (56% did not know) and changes in the home to make it easier to live in (50% did not know).

 

6.9 Information wanted

It can be seen in Figure 12 that, of the areas of information given in the questionnaire, respondents most wanted more information about practical help they may be entitled to (59% of respondents wanted more information). However, there was little difference in the frequency of responses between the areas of information. For all areas a large percentage (over 40%) of respondents wanted more information.


 


For the follow-up question, the majority of respondents (70%) said they would like to be told where to get this information locally.


6.10 Preferred means of getting information


Although respondents were asked to select one means of getting information that they liked the best, some selected more than one. Allowing multiple responses, it can been seen from Figure 13 that other people (face-to-face) was by far the most frequently selected (40% of responses) and was thus clearly the preferred means. Other forms of information provision were far less liked, with the Internet chosen the least (0% of responses).

 


6.11 A printed publication

Seventy two per cent of respondents said that if the information were in a book or booklet, they would read it.

 

The majority wanted to get this book or booklet by borrowing it from a library (45% of respondents prefer this means of access). As for the alternatives, 36 per cent wanted to read it at a local advice centre and 17 per cent wanted to buy it.

 

Respondents were asked to write down how much they would be prepared to pay for a book or booklet. For the 37 per cent who gave a figure the average amount was 1.62, including those that wrote 0 (zero pounds), or 2.30 excluding 0s.

 

6.12 Computer and Internet use

Two per cent of Day Care Centre respondents said that they used a computer, and 5 per cent said that they used the Internet.

 

6.13 Preferred term


Although respondents were asked to choose one term for referring to an elderly person that they liked the best, some chose more than one. Allowing multiple responses, it can be seen from Figure 14 that by far the majority of respondents (58%) preferred to be called "senior citizen".

 


6.14 Help to complete questionnaire

Fifty four per cent of respondents were helped to complete the questionnaire by a member of staff of their Day Care Centre.

 

Information supplied by staff of the Day Care Centres, using the Questionnaire Record Tables, gave the reasons these respondents needed help:

        36% needed help due to their disability

        4% needed help due to their educational background

        for 14% no reason was given

 

The summary and conclusions of the results for the Day Care Centre questionnaire respondents are given in Part 6 of this report, where the results are compared and contrasted with those for the other two respondent groups.

 

7 Results: Social Club members

 

The number of questionnaire returned for this group was 976 (57% return rate, see Part 5, Section 5.1). For the following results, percentages were calculated using the total number of people that responded to a question (i.e., missing responses were excluded), unless otherwise stated. The questionnaire for this group is given in Appendix F.

 

7.1 Age and gender of respondents

The age distribution of the Social Club members who responded is given in Figure 15. It can be seen that the most frequently occurring age groups were 71-75, 76-80 and 81-85. The oldest group (over age 90) was the smallest. Comparing this distribution with the national data shown in Figure 7 (Section 6.1 in this Part of the report), it can be seen that the age distribution of people aged 60 and over in the UK in 1997 shows a different pattern. The pattern of the distribution for Social Club respondents implies that with increasing age the over 60s are increasing likely to attend social clubs for elderly people, until around age 80 when the numbers begin to fall due to deteriorating health and mobility, and death.


 


Males constituted 17 per cent of the respondents and females 83 per cent (a ratio of 1 man to every 5 women). Table 3 shows the percentage of males and females in the different age groups.

 

Table 3: Percentage of male and female Social Club respondents in each age group.

Age group

 

60-65

 

66-70

 

71-75

 

76-80

 

81-85

 

86-90

 

Over 90

All groups

% male

20

21

14

17

15

12

26

17

% female

80

79

86

83

85

88

74

83

 

It can be seen from Table 3 that the ratio of men to women remained fairly constant throughout the different age groups, with women forming the larger portion of Social Club members. Comparing these figures with the national figures for the percentage of older men and women in different age groups (see Table 2, Section 6.1 in this Part of the report), it can be seen that there was a far greater percentage of women among the respondents than there are nationally. The reason for this could simply be that social clubs for elderly people are more popular with women.

 

7.2 Living alone

Sixty six per cent of the Social Club respondents lived alone. The percentage living alone increased with age.

 

7.3 Wheelchair use

Of those that responded, 2 per cent said they always used a wheelchair, 9 per cent said they sometimes used one and 89 per cent said they never used one.

 

7.4 Difficult tasks

The task most widely reported as difficult was gardening, with 47 per cent if Social Club respondents saying that they could not garden easily by themselves. The task that caused the least problems was keeping warm indoors, with only 1 per cent of respondents finding this difficult.

 

7.5 Biggest problem

To determine the tasks that caused the most severe difficulties, respondents were asked to name their biggest problem (of those tasks in the previous question, as shown in Figure 15). Of the 976 respondents, 298 gave an answer. Some wrote more than one problem. Allowing multiple answers, the task most often given as the biggest problem was taking a bath (18% of responses). This was followed by:

4.    "get around outdoors" and "garden", each with 9% of responses

5.    "walk up stairs", 8% of responses

6.    "read labels", "walk down stairs" and "see to read", each with 6% of responses

 

All other tasks given as the biggest problem were named on less than 5 per cent of occasions.



 


7.6 Help with impossible tasks

The majority of Social Club respondents (73%) said that they got enough help with the things that they were unable to do. However, 27 per cent did not.

 

It can be seen from Figure 17 that, of the sources of help given in the questionnaire, the respondents had most help with day-to-day tasks from their family doctor (37% of respondents) and a hospital department (36%). However, it can also be seen that the majority of respondents (63% and 64% respectively) never had help from these sources.


For the follow-up question, the majority of respondents (71%) said that they easily got all the help they wanted. However, 29 per cent did not.

 


7.7 Formal information and advice providers: awareness and use

Figure 18 gives some idea of respondents' awareness of the various information and advice providing organisations available to them. Age Concern was the best known organisation (97% of respondents had heard of it), followed by Help the Aged (80%), RNIB (73%) and RNID (59%). Apart from these four organisations, respondents seem to be largely unaware of the organisations mentioned in the questionnaire. The remaining organisations were unknown to more than 70 per

cent of respondents.

 


The follow-up question asked whether the respondent had ever had any useful help from any of these organisations: 18 per cent responded "Yes". Thus, 82 per cent had not. Those that responded "Yes" were asked to write down which had been the most useful. Of the 976 respondents 132 gave an organisation, sometimes more than one. Allowing multiple answers, by far the most frequently named, and therefore the most useful, organisation was Age Concern (46% of responses). RNIB (13%) and RNID (11%) followed.

 

7.8 Knowledge of where to get help


Thirty one per cent of respondents said that they had needed help and did not know whom to contact to get it.

 


Respondents' knowledge of where they could get help with a number of topics can be ascertained from Figure 19. They were most knowledgeable about where to get help with pensions (83% of respondents said they knew where to get help). They were least knowledgeable about where to get help with looking after someone else (63% did not know), followed by financial help to stay at home (58% did not know) and changes in the home to make it easier to live in (53% did not know).

 

7.9 Information wanted


Figure 20 shows that, of the areas of information given in the questionnaire, respondents most wanted more information about practical help they may be entitled to (61% of respondents wanted more information), closely followed by money benefits they may be entitled to (60%). The other areas also had a large percentage of respondents (over 40%) wanting them.

 


For the follow-up question, many respondents (68%) said they would like to be told where to get this information locally.

 

7.10 Preferred means of getting information

Respondents were asked to choose one means of getting information that they liked the best. However, some chose more than one. Allowing multiple answers, Figure 21 shows that other people (face-to-face) was the most frequently selected (23% of responses) and was thus the preferred means. The Internet and Ceefax or Teletext were the least liked means of information provision (each with 1% of responses).


 


7.11 A printed publication

The majority of respondents (87%) said that if the information were in a book or booklet, they would refer to it.

 

Social Club respondents preferred to get this book or booklet by borrowing it from a library (59% of respondents liked this means of access best). As for the alternatives, 22 per cent wanted to buy it and 18 per cent wanted to read it at a local advice centre.

 

Respondents were asked to write down how much they would be prepared to pay for a book or booklet. For the 27 per cent who gave a figure the average amount was 2.02, including those that wrote 0 (zero pounds), or 2.39 excluding 0s.

 

7.12 Computer and Internet use

Four per cent of Social Club respondents said that they used a computer, and 5 per cent said that they used the Internet.

 

7.13 Preferred term


Although asked to select one term for referring to an elderly person that they liked the best, some respondents selected more than one. Allowing multiple responses, it can be seen from Figure 22 that the majority of respondents (58%) preferred to be called "senior citizen".

 


7.14 Help to complete questionnaire

Twelve per cent of respondents were helped to complete the questionnaire by the leader of their Social Club.

 

The Questionnaire Record Tables, completed by the club leaders, gave the reasons why these respondents needed help:

        3% needed help due to their disability

        1% needed help due to their educational background

        for 3% the reason was not known

        for the remaining respondents helped, no reason was given

 

 

The summary and conclusions of the results for the Social Club questionnaire respondents are given in Part 6 of this report, where the results are compared and contrasted with those for the other two respondent groups.

 

8 Results: Carers

 

The number of questionnaires returned for this group was 302 (23% return rate, Part 5, Section 5.1). For the following results, percentages were calculated using the total number of people that responded to a question (i.e., missing responses were excluded), unless otherwise stated. The questionnaire for this group is given in Appendix G.

 

8.1 Age and gender of respondents (carers)

The age distribution of the Carers' Centre members who responded is given in Figure 23. It can be seen that, in general, the percentage of respondents in each age group increased with age. The greatest percentage of respondents (36%) was in the oldest age group (over age 70). It appears, then, that carers of elderly people are predominantly over 60, as stated previously by Age Concern (Age Concern England, 1999).

 


 


Males formed 23 per cent of respondents and females 77 per cent, suggesting that the carers of elderly people are mainly women. This agrees with the finding of the 1995-96 General Household Survey that people of any age who were sick or disabled were more likely get their informal care from women in the UK (General Household Survey, 1998; Office of National Statistics, 1999).

 

8.2 Age and gender of the people cared for

The age distribution of the elderly people cared for by the respondents is shown in Figure 24. It can be seen that the most frequently occurring age groups were 71-75, 76-80 and 81-85. This may be expected as prevalence of disability (and, thus, the need for care) increases with age, until the numbers start to fall due to death in the oldest age groups.

 


 


The percentages of males and females cared for were virtually equal (49% and 51% respectively).

 


8.3 Living arrangements and relationship

Eighty per cent of the respondents lived with the elderly person they cared for. Further analysis showed that the older the respondent was the more likely she was to live with the person she cared for.

 

Ninety three per cent of respondents were related to the person they cared for.

 

These findings suggest that the majority of elderly people receiving informal care in the UK are looked after by an elderly female relative who lives with them.

 

8.4 Wheelchair use

According to the respondents, 15 per cent of the people cared for used a wheelchair all day, 41 per cent used it part of the day and 45 per cent never used a wheelchair.

 

8.5 Difficult tasks


Note: this chart excludes the percentage of carers responding "not needed".


 


It can be seen from Figure 25 that the task most widely reported as difficult by the carers was helping the person cared for to use public transport, with 49 per cent responding "No", they could not easily do this (19% responding "Yes" and 33% responding "Not needed"). The task that caused the least problems was helping the person cared for to keep warm indoors, with only 4 per cent of respondents finding this difficult.

 

8.6 Biggest problem

To ascertain the most severe difficulties experienced, respondents were asked to write down their biggest problem (of those tasks in the previous question, as shown in Figure 24). Of the 302 respondents 133 gave an answer, sometimes more than one. Allowing multiple answers, the task most often given as the biggest problem was helping the person cared for to use public transport (14% of responses), closely followed by take a bath (13%), then:

1.      "get around out doors", 8% of responses

2.      "walk up stairs", 7% of responses

3.      "walk down stairs", 6% of responses

 

All other tasks given as the biggest problem were named on less than 5 per cent of occasions.

 

8.7 Help with difficult tasks

Fifty five per cent of respondents said that they would like more help with those things they found difficult to do.

 

It can be seen from Figure 26 that, of the sources of help mentioned in the questionnaire, the majority of respondents received help with day-to-day tasks from Social Services (70% of respondents). This is not surprising as Carers' Centres can be linked to Social Services, which may provide funding and various forms of assistance for a centre's members such as respite care and transport to meetings.


 


For the follow-up question, the majority of respondents (59%) said that they easily got all the help they wanted. However, 33 per cent did not (8% did not need it).

 

8.8 Formal information and advice providers: awareness and use

Respondents' awareness of the various information and advice providing organisations available to them can be ascertained from Figure 27. The best known organisations were Age Concern (99% of respondents had heard of it), Help the Aged (91%), RNIB (89%), Carers National Association (87%), and RNID (79%). For the remaining organisations awareness was poor, as they were unknown to more than 50 per cent of respondents.


 


The follow-up question asked whether the respondent had ever had any useful help from any of these organisations: 64 per cent responded "Yes", 19 per cent "No" and 17 per cent "Not needed". Those that responded "Yes" were asked to write down which had been the most useful. Of the 302 respondents 179 gave an organisation, sometimes more than one. Allowing multiple answers, by far the most frequently named organisation was the Carers' National Association (50% of responses). That this was the most useful organisation to respondents is to be expected, as the carers who received questionnaires were members of local Carers' Support Centres, affiliated to the Carers' National Association. Age Concern was the second most frequent organisation named (19% of responses).

 

8.9 Knowledge of where to get help


Fifty three percent of respondents said that they had needed help and did not know whom to contact to get it. This is a surprising large percentage considering this sample of carers had help in terms of information and advice from a Carers' Support Centre.

 


The respondents' knowledge of where they could get help for the person they cared for, with a number of topics, is shown in Figure 28. They were most knowledgeable about where to get help with pensions (89% of respondents said they knew where to get help), closely followed by making a will (87%) and claiming money benefits and allowances (83%). They were least knowledgeable about where to get financial help to stay at home (57% were aware of where to get help with this matter).

 

8.10 Information wanted


It can be seen in Figure 29 that, of the areas of information given in the questionnaire, respondents most wanted more information about practical help they may be entitled to (67% of respondents wanted more information). The other areas also had a large percentage of respondents (over 40%) wanting them.

 


For the follow-up question, the majority of respondents (79%) said they would like to be told where to get this information locally.


8.11 Preferred means of getting information


Respondents were asked to select one means of getting information that they liked the best. Nevertheless some selected more than one. Allowing multiple responses, it can been seen from Figure 30 that other people (face-to-face) was clearly the preferred means, as it was the most frequently selected (35% of responses). Other forms of information provision were far less liked, with the Internet chosen the least (1% of responses).

 


8.12 A printed publication

Ninety four per cent of respondents said that if the information were in a book or booklet, they would refer to it. They preferred to get this book or booklet by buying it (38% of respondents) or borrowing it from a library (37%). Twenty five per cent wanted to read it at a local advice centre.

 

Forty eight per cent of respondents wrote down how much they would be prepared to pay for a book or booklet. The average amount was 3.73, including those that wrote 0 (zero pounds), or 4.03, excluding 0s.

 

8.13 Computer and Internet use

Twenty per cent of the carers said that they used a computer, and 6 per cent said that they used the Internet.

 

8.14 Preferred term


Although respondents were asked to choose one term that they preferred to use for the person they cared for, some chose more than one. Allowing multiple responses, it can be seen from Figure 31 that the majority of respondents (35%) preferred the term "senior citizen".

 

 

 


The summary and conclusions of this questionnaire survey of Day Care Centre clients, Social Club members and Carers' Centre members are presented in the following Part (Part 6) of this report. In Part 6 the results from the three groups are compared and contrasted.