Before describing how the series of focus group sessions in this investigation were carried out, this introductory Chapter provides some background information on focus groups and their use. The implications of age-related declines in ability for running focus groups with elderly participants are examined in Chapter 2. The description of the Disability Information Trust focus group investigation begins with Chapter 3.

1.1 What are focus groups?

Focus groups:

· are a method for gathering research data;

· are focused on the research topic;

· use people in group discussion;

· have a moderator to guide the discussion;

· provide data of a qualitative nature.

(Krueger, 1994; Morgan, 1997)

As a form of qualitative research, the focus group is a tool for obtaining information from people on how they think and feel about an issue, product or service. A focus group is a group of similar people having a discussion focused on the research topic, guided by the researcher. Conducting such a discussion several times with similar types of participants can identify trends and patterns in perceptions (Krueger, 1994). Focus groups are basically group interviews that rely on group interaction to generate data (Morgan, 1997). In research studies focus groups can be used as:

· a self-contained method, acting as the principal source of data;

· a supplementary data source to some other primary method, such as a survey;

· part of a multi-method study combining two or more methods of gathering data, with no one primary method determining the use of others. (Morgan, 1997)

1.2 Why use focus groups?

According to Krueger (1994) focus groups are beneficial for identification of major themes. Unlike one-to-one interviews and questionnaires, focus groups enable group interaction, thereby allowing greater insight into people's experiences and opinions than could be achieved without the interaction found in a group (Krueger, 1994; Morgan, 1997). The focus group discussion is particularly effective in providing information about why people think or feel the way that they do (Krueger, 1994; Morgan, 1997, 1998). Participants can respond freely and spontaneously, without the limitation imposed by questions offering fixed responses (Krueger, 1994). Such participant interaction can rapidly produce valuable ideas rather than the individual responses obtained with questionnaires and one-to-one interviewing (Caplan, 1990). Focus groups can produce concentrated amounts of data on the topic of interest and in this respect are more efficient than individual interviews, at least in terms of gathering equivalent amounts of data (Morgan, 1998).

1.3 Strengths and weaknesses

Morgan (1998) points out that while the focused nature of the discussion and the interaction among the participants are the sources of strength for focus groups, they are also the sources of weakness. One criticism of focus groups is that they may take place in an unnatural environment: they consist only of interaction in discussion groups and the discussion is created and directed by the researcher. There is concern that the moderator, in trying to maintain the focus of the discussion, will influence the group's interactions. The researcher's influence on the data is an issue in almost all qualitative research, and researchers should be aware of its affect on the quality of the data (Morgan, 1998). Interacting in a group, in turn, can influence individual participant's behaviour in terms of tendency towards conformity (withholding opinions that may be expressed in private) and polarisation (expressing more extreme views in a group than in private).

1.4 Arrangements within the focus group

The arrangement of the participants around the meeting table can have an effect on how the group interacts, the ease with which the moderator can control participants, and, hence, how smoothly the discussion proceeds. Krueger (1994) stresses the importance of 'small talk' prior to moving into the meeting room for the discussion. A short period of small talk is useful, not only for breaking the ice and relaxing the participants, but also for making a quick assessment of the behaviour of each participant. Dominant talkers, self-appointed experts, shy people, and ramblers can be identified so that they can then be seated at appropriate locations in relation to the moderator, making them easier to control during the discussion. With elderly participants, those who have difficulty hearing should be seated nearest the moderator. Name cards should be used to identify the participants, and these can be placed around the table to indicate where each participant should sit. The moderator should also be identified in this way.

Careful consideration should be given to whether written materials are absolutely necessary: those with poor literacy skills may be made extremely uncomfortable, and resentful, if required to carry out a task involving reading in a group situation (see Part 2, Section 7.3). Of course, focus groups consisting purely of discussion will not discriminate against those with poor literacy. However, this may be difficult, as many focus group activities involve the use of written material.

1.5 Focusing and guiding the discussion

The discussion is focused on particular related topics, determined by the researcher and supplied in the discussion by the moderator (who can also be the researcher). It is the moderator's job to focus and guide the discussion and focus groups vary in the amount of moderator intervention required. The moderator needs to be adept and experienced in communicating clearly, listening carefully and sensitively, guiding the conversation, controlling the participants, encouraging responses, making participants feel that their responses are valued, and keeping the discussion focused on the aim of the study (Krueger, 1994).

For a series of focus groups, careful preparation is important and involves not only the design of the questions themselves, but also the way the questions are organised and introduced to help focus the discussion. Focusing is helped by starting the discussion with a general introduction to the topic and beginning with more general questions then progressing to more specific ones (Krueger, 1994; Morgan, 1997). Krueger (1994) recommends providing background information about the purpose of the study and establishing the context of the questions. These requirements can be achieved in the invitation letter as well as the moderator's spoken introduction. Krueger (1994) and Morgan (1997) stress the importance of the first few moments of the session (the welcome, the overview of the topic, the ground rules and the first question).

1.6 Using focus groups in questionnaire development

Focus groups are useful in developing questionnaires (Morgan, 1997 and 1998). According to Morgan (1997), there are three basic ways that focus groups can contribute to the development of surveys. The first is by identifying all the 'domains' that need to be measured in the survey. Thus, rather than basing the survey on the researcher's own assumptions about what is relevant, focus groups ensure that the researcher has as complete a picture as possible of participants' thinking. Secondly, focus groups are an efficient tool in determining the dimensions that make up each domain because a relatively small number of groups can generate a large number of ideas about the items that are needed to cover each questioning area. Finally, focus groups can provide insights into appropriate question wording.

Consequently, focus groups reduce the chances of making errors in creating survey questions and, by making them relevant, improve validity (Morgan, 1997). However, Morgan (1997) warns that it is important not to let a chance remark by a participant either destroy a good idea or push the researcher into a decision that is not supported by other data gathered in the focus groups.

2 Effects of ageing on various abilities: implications for focus

groups

There are a number of sensory, perceptual and cognitive effects of ageing that can affect performance of certain tasks. Age-related declines in ability have implications for the running of focus group discussions with elderly people as participants. These declines in ability are described in Part 2, Section 7.2 of this report and the implications are examined below.

2.1 Auditory perception, speech comprehension and memory

With elderly adults one can expect a wide range of auditory sensitivity and speech comprehension across individuals. As Tun and Wingfield (1997) point out, these two abilities can differ. Since noisy and reverberant conditions greatly exacerbate difficulties with speech perception and comprehension, it is important that focus group discussions take place in a non-reverberant room, free of background noise. The moderator needs to speak slowly and clearly, using words the participants will understand. A difficulty with divided attention implies that a discussion with elderly participants will progress more smoothly if they speak one at a time. Avoiding interruptions can be particularly important with older participants, not only due to the problems caused for older listeners by two people speaking at once, but also because of the possibility of disrupting the information currently held in the working memory of the speaker.

Recognition, comprehension and memory of spoken information in older people appear to benefit from prior context cues (Tun & Wingfield, 1997). Thus, establishing a context for the questions before a focus group discussion begins, and also before sub-groups of questions, should help elderly participants to process the subsequent questions. In addition, according to Krueger (1994), establishing the context of the questions is important to focusing the discussion.

2.2 Focused attention

The fact that older people have problems focusing attention and have difficulty ignoring information irrelevant to the ongoing task implies that the moderator in a focus group with elderly participants may have to work hard at focusing and guiding the discussion. Thus, although it is often possible to run focus groups in a free manner, with little intervention from the moderator, this may be less likely with older participants. Krueger (1994) offers some suggestions to help focusing (see Section 1.5 in this part of the report).

2.3 Cognitive slowing

Older adults need more time than younger adults to process information (Morrow & Leirer, 1997; Tun & Wingfield, 1997; Vercruyssen, 1997), to recall material from semantic memory (Howard & Howard, 1997), to retrieve the correct words in language production, and to plan what to say and how to say it (MacKay & Abrams, 1996). Thus, it follows that elderly focus group participants may need more time to give their responses than younger participants.

2.4 Sustaining attention and performance

Difficulties with sustaining attention and performance indicate that it would be wise to keep a focus group discussion with elderly people as short as possible. Careful design of the questions is required, so that the information the researchers seek can be gathered with the minimum number of questions.

2.5 Performance and task complexity

It seems that with any age-related decline in ability the following applies: the more complex the task the more performance will suffer. Therefore when using elderly people in a study such as this the message appears to be: keep it simple. It is especially important for elderly focus group participants that, as recommended by Krueger (1994), the questions are simple, short, use words that the participants understand, and are limited to a single dimension. The wording of the questions can be tested out on people similar to the target participants before use in an actual discussion (Krueger, 1994).

3 Aim of focus group investigation

Initially, the aim of the Disability Information Trust study was to determine the acceptability of, and appropriate design and content for, a printed publication containing information, advice and products to help make life easier for elderly people living at home. This aim set the topics for discussion in the focus groups.

Focus groups were used to provide some insight into the major themes involved and aid in the development of the questionnaires for the survey in Part 5 of this report.

4 Method

4.1 Focus group participants.

The focus group participants were potential users of the planned publication.

Aiming for a focus group size of 6-8 people, 8 people were invited to each of four focus group discussions. People selected for the first three focus groups were those aged 60 and over who lived in their own home and who were trying to stay as independent and active as possible. The people selected for the fourth focus group were non-professional carers of disabled elderly people.

A total of 20 people participated in the series of four focus group discussions.

Focus Group 1: Five women aged between 60 and 80, three of whom lived alone. One participant was disabled.

Focus Group 2: Three men and three women, aged between 60 to 78. None of the participants lived alone. Two of the men were disabled.

Focus Group 3: Five disabled men, aged between 61 to 88, who lived independently in their own homes, visiting a Social Services Day Care Centre one or two days a week. One participant lived alone, the rest lived with their wives who acted as carers.

Focus Group 4: Three women and one man, all aged over 60. All were non-professional carers, caring for their disabled elderly spouse, and living with the persons they cared for in their own homes.

4.2 Moderators

In selecting appropriate moderators for the discussions, it was felt that elderly participants would feel most comfortable with a moderator that they perceived as similar to them. As Krueger (1994) states, participants must feel that the moderator is the appropriate person to ask the questions.

A 71 year old disabled female acted as moderator for Focus Groups 1 and 2. A 68 year old partially disabled male, experienced in running focus groups, acted as moderator for Focus Groups 3 and 4.

4.3 Procedure

Once the people selected to participate had given their verbal agreement to attend, an invitation letter was sent out to them 1-2 weeks before the scheduled focus group session. The letter was in large print (14 point). It explained the purpose of the study, background information, why the person's views were important to the researchers, and an introduction to the discussion topics. Participants were invited to think about these topics before attending the discussion. These points were also explained to the participants in greater detail just before the discussion began at the focus group meeting that they attended.

Focus group meetings were held at a location that the participants regularly attended and at a date and time that they were usually there. A local sports and leisure centre catering for elderly and disabled people was used for Focus Groups 1 and 2 and a local Day Care Centre for disabled elderly people for Focus Groups 3 and 4. Thus, there were no unusual transport arrangements or unfamiliar surroundings involved. A suitably quiet, warm and well-lit room was used for the focus groups. To prevent interruptions a 'do not disturb' sign was placed on the door of the room.

Although the discussions were held at locations familiar to the participants, they were nevertheless met at the entrance and greeted by the moderator and assistant moderator. A short period of small talk was used to ascertain dominant talkers, self-appointed experts, shy people, and ramblers so that they could be seated at appropriate locations in relation to the moderator, as recommended by Krueger (1994). Those who had difficulty hearing were seated nearest the moderator. Participants were asked what they prefer to be called, and these names written in large letters on name cards. The moderator and assistant moderator were also be identified in this way.

The participants and moderator sat around a large table (Focus Groups 1 and 2), or in a circle (Focus Groups 3 and 4). The discussions were recorded on tape and an assistant moderator took notes. The participants were asked to speak one at a time so that everyone's comments could be heard on the tape later on. The discussions were designed to last for 1½ hours. Participants were offered a break, with refreshments half way through the session.

Focus Group 1 was run in a free and open manner to determine the key issues and the questions that needed to be asked in further focus group discussions. Very general questions were prepared for Focus Group 1 by talking to experts and disabled elderly people and were reviewed by a disabled elderly person.

Following Focus Group 1, it was decided to give participants in subsequent discussions a questionnaire to obtain personal details and other information that they may not have wished to reveal in front of others, e.g. receipt of benefits, use of home adaptations and special equipment, health and disabilities. This large print (14 point) questionnaire was administered after the discussion and participants were offered help and/or privacy to complete it. All participants were sent a large print letter thanking them for taking part.

4.4 Focus Group Questions

With reference to a possible publication providing useful information and advice to help elderly people manage more easily at home, the purpose of the discussion was explained to the participants in the invitation letter and orally directly before the discussion began. The explanation given was as follows:

We would like to hear your opinions on what this new publication should contain and how it should be presented. We want to know what information and advice you would like to see, what useful organisations and services should be included, what house adaptations, equipment and products would be useful. We also want to know how you would like the publication to be designed and written so that it is easy to use and understand and offends no one.

The questions developed following Focus Group 1 were divided into different topics (groups of 2-6 questions) and each topic was introduced to the participants before the questions were asked, to establish the context of the next few questions. As recommended by Krueger (1994) and Morgan (1997), the session began with general questions and progressed to more specific ones relating to the key topics of the investigation. Serendipitous questions from the moderator and assistant moderator were allowed at the end of each topic of questions.

The precise questions put to the group of carers (Focus Group 4) varied slightly from those put to the other groups as they concerned both their own personal experiences as carers and those of their disabled elderly spouse. The results of Focus Group 4 are thus reported separately

Questions asked by the moderator covered the following topics:

1. Introductory questions: participants were invited to introduce themselves, describe their hobbies and interests and briefly describe the biggest problem they had since becoming 60 / since becoming a carer.

2. Information and Advice: these questions were used to determine sources of information and advice used by the participants; how they made contact; the types of information they sought; any problems they experienced; whether they had all the information they needed; what information and advice they wanted; and whether they wanted to know about information providers in their local area.

3. Day-to-day tasks and useful products: day-to-day problems experienced by the participants; any home adaptations or special products they used to make things easier; sources used to get information on adaptations and products; what information they wanted on these areas; and whether they preferred photographs of products to depict elderly people using them.

4. Design of the publication: what form the participants wanted the publication to take (e.g. a single book, a series of booklets); how they wanted it designed and written so that they would find it easy to use and understand; the preferred terms for referring to people over 60; suggestions for a title and front cover.

5. Price and availability: what price participants would be prepared to pay for a publication and where they would like it to be available.

6. Ending questions: what each participant considered to be the most important thing discussed and anything else they wanted to say.

The questions used to guide the discussion in Focus Groups 1 to 3 (elderly and disabled elderly people) are given in Appendix A and those used in Focus Group 4 (carers) are given in Appendix B.

5 Focus group results: Focus Groups 1 to 3 inclusive (elderly and disabled elderly people)

The main points emerging from the first three focus group discussions are given below.

5.1 Biggest problem

When asked for the biggest problem that they had experienced since becoming 60, many spoke of physical failings and problem with mobility and transport. One participant spoke of difficulty in getting information.

“Not being able to get about and do what I used to.” JB

5.2 Information and advice wanted

Where, who and how

Most participants felt that it was important to know whom to contact for information, advice and help. They wanted to know where to go, whom to ask and how to get information and advice. This applied to: services designed to help elderly people; financial and health advice; and practical help, home adaptations, and useful products. Participants wanted both national contacts and how to find local contacts.

“At least if you know where to ask, or you know who can tell you, that’s the starting point.” EM

“I think it would be very good, in the beginning, if you can give the points of contact. Where people should contact whom, for what… I think that should be in the start of the book.” JD

"I must say the important thing is where to go." EC

"The biggest problem, I find, is you don't know who to approach." CB2

“The government says that there is a lot of money that is not being claimed don’t they – why isn’t it being claimed? Because people don’t know where to go and can’t fill in forms.” CB1

“The DSS says we’ve got all this – right, ask – but you don’t know the right questions to ask. But if you know the right person to ring…” PT

"A section on health care, it's more self help care than anything else." CB1

What

Participants also wanted to know what help was available and what their entitlements were in terms of money and services. Armed with this information, they then needed to know who to contact to get what they were entitled to (see point 4.1 above).

“…what you are entitled to from the DSS…what you may claim on and the things that are available.” PT

“It should include pensions and what allowances are available, not specifically the amounts because obviously that is going the change, but what the allowances are and what their titles are.” JPS

5.3 Sources and channels of information and advice

Most frequently used formal sources of information and advice were the Citizen's Advice Bureau, Dialability (the Disablement Information and Advice Line in Oxford) and Social Services. Others mentioned were: the GP; the health visitor; Age Concern; Association for Retired Persons over 50; DSS; and the Anchor Trust.

The disabled elderly men in Focus Group 3 liked the idea of getting information from a knowledgeable, elderly person at their Day Care Centre.

Social Services

There was much deliberation, in focus group discussions 2 and 3, on the quality of advice and help provided by Social Services. Participants' views were based on their own experiences. They felt either that Social Services were very unhelpful or that people could only get what they wanted if they were persistent or requested the help through some other service provider.

“Social services, as far as I am concerned, are a complete and utter waste of time. I find them very unhelpful.” CB2

"I contacted the social services as a carer for my mother in law…. I got everything I wanted. Mind you, I had to push. You have to have initiative." LJ

“When I have contacted Social Services for something they have been really slow. Sometimes, in fact, when I contacted them they are so busy they can’t do it. If you go through either your GP or health visitor – now they immediately contact the Social Services and you get the service, but if you contact them directly you will not get it." JD

GPs' Surgeries

Some participants had found the GP to be a useful provider of information and advice. Others felt that GPs should fulfil the role of directing people to local sources of information and advice, especially since it would be difficult for a national publication to do this, but many GPs failed at this.

“The only trouble is that it is a national publication and the where and how are going to be different for different parts of the country. ” EM

“In this case the GP helps a lot. My GP is a great person. You know, if I go to him, and I’ll say how do I do so and so, how do I go about it? And he advises me in lots of cases.” KL

"You read up on things you want to know [using leaflets at the GPs Surgery] and that’s helpful ” EC

“Doctors are not the best sources of information, unfortunately.” JPS

“They [surgeries] should have [information], a lot them probably do but not all of them do – it depends on the practice, it varies very much.” EM

Printed information

Despite the vast amount of printed information that exists on practical help, services, health, benefits and equipment available to elderly people, few participants mentioned having used any leaflets, booklets or books. Because participants in Focus Group 3 could not envisage a printed publication they were shown an example of a Disability Information Trust (DIT) publication, 'Walking and Standing Aids', and the free Department of Health booklet, 'Health and Well-being, A Guide for Older People'. The participants had never seen these publications.

“I’m not being rude, but I’ve never seen one before.” EC

5.4 Day-to-day tasks

Participants had difficulties with day-to-day tasks due to lack of physical strength, flexibility and energy. Tasks such as getting in and out of the bed, bath or chair, going up and down stairs and steps, gardening and heavy household chores and those involving lifting and bending.

“Getting in and out of the bath.” HD

“Peeling potatoes, gardening, carrying two buckets of water down the garden, washing – hanging up the washing, you name it I have a problem with it.” CB2

“I find things like cleaning an oven, bending down – I can’t move my head and neck – I can’t do those things.” PT

5.5 House adaptations and products.

Most participants wanted to know: where to go to see, try out and get house adaptations and useful products; how to get them; and who to contact to get them. In addition, some participants wanted to know what is available and how to get financial help to pay for these things.

"The most important thing is who do you contact to get these improvements done." LJ

“…where we get equipment to help people to stay put in their own homes…” SH

"Who pays?" EC

“If you want to make your life easier – that’s what it is for disabled people and elderly people – they want their life to be a little bit easier. In order to do that they have to know what they can get and how they can get it.” JD

5.6 Design of a printed publication.

Form of publication

Most participants wanted a publication to take the form of a single slim book or booklet. They wanted it written in a simple and easy to understand manner, in large print, and divided into sections with a simple index ("not like the telephone directories").

“You can get all the information in one.” NC

“It should be a single booklet, and simply written, not too much wording, concise.” CB1

“It should be divided into sections so that it’s fairly easy for people to find their way around. If it’s too large it becomes a bit daunting doesn’t it.” EM

“An index is important.” SH

“It needs to be done fairly simply and a simple index, not like a telephone directory that has about six different places to look for a number.” CB1

“I would suggest it’s in large print for a start.” JPS

Most participants in Focus Group 2 felt that information provided in the form of a printed publication would have problems being kept up-to-date, which they felt was vital. A participant in Focus Group 3 also expressed this sentiment, feeling that leaflets were more practical than a book which he felt would not be read.

"You could do an 18 month edition. If people go out of business or close down, then the book will need to be amended won't it." CB2

“One thing you could do with the book is have holes put in the edge so that it could be put in a ring binder and things could be added to it.“ NC

“If you put one of those [Disability Information Trust book] through everybody’s letter box, elderly and disabled – how many would read it, how many would any notice of it? Well, as new ideas come out surely they can produce a little leaflet or whatever.” KL

Terminology (Focus groups 2 and 3).

The second and third focus groups were asked for their preferred term for people over 60. The second group agreed on "senior citizens" or "people over 60" and the third group preferred "elderly people".

Photographs of products (Focus groups 2 and 3).

All participants of groups 2 and 3 wanted photographs of products to show elderly people demonstrating the use of the products. Several participants did not want the people to look too ill or disabled.

“I think elderly people look to elderly people rather than models.” NC

“If you only put people who have the disability and look like they’ve got the disability – there are lots of people who say ‘that’s not me yet, I don’t need it’.” PT

Front cover (Focus group 2).

Only participants in focus group 2 were asked for suggestions for a title and cover design for the publication. They felt that a suitable title should indicate what the publication will provide, such as "information" and "help", and for whom, such as "senior citizens" or "over 60s". They wanted the cover to be a bright, eye-catching colour and came to a decision that the front should show a number of elderly people of different ethnic origin engaged in various activities. The overall feeling was that elderly people, both on the front cover and in photographs inside the publication, should be portrayed in a positive light.

“Information for Senior Citizens.” PT

“It's got to be a bright colour so that it takes your eyesight to it, hasn’t it.” CB2

“If you put two people who are elderly. Then beside it, say, some playing bowls, and two or three doing various sports.” PT

5.7 Price and availability of a publication

Price

Only participants in Focus Group 2 were asked the price they would pay for the publication. All participants in Focus Group 2 agreed on £4.99, except one who felt that some pensioners would not be able to afford this.

Availability

Participants wanted a publication it to be available in libraries, GPs' surgeries and local advice centres.

“I presume it will be available from libraries and places like that as well.” EM

“Social Services, doctors’ surgeries, Shopmobility, Dialability, any of the Age Concern organisations.” CB2

5.8 Other Media

Other media were mentioned during the discussions as possible sources of information. Some participants in Focus Group 1 felt putting the publication on tape for visually impaired people was a good idea. They also felt that it would be impossible to cater for all ethnic groups by providing the publication in every language involved. In discussing the problems with keeping a printed publication up-to-date, participants in Focus Group 2 suggested the television and Internet as alternatives, recognising that the television is widely used and the Internet is not.

“TV is the thing that gets to everyone. ” PT

“What about that horrible computer thing – the Internet? ” LJ

“That's alright for people who have got computers, but that's not going to help people like us. Not everyone knows how to use a computer. ” CC

5.9 Most important point

Participants considered the most important points to be:

· whom to contact or where to go for information and help (5 participants);

· availability of the publication to elderly people (4 participants);

· easy access to information (2 participants);

· a publication that is easy to read and understand (2 participants);

6 Results: Focus Group 4 (carers)

6.1 Biggest problem for the carers themselves

When asked for the biggest problem that they had experienced since becoming carers, two participants spoke of the physical demands of lifting, handling, dressing and washing a person with mobility difficulties. For the other two, the biggest problem was: having to rely on other people for help; and managing the medical condition of the person cared for.

“I have to help her take a shower and help her with her shoes, her clothes, things like that.” SM

6.2 Biggest problem for the people cared for

When asked what they felt to be the biggest problem experienced by the person that they cared for, two participants spoke of the frustration experienced by their spouse due to feeling dependent, and the other two spoke of disabilities resulting from their spouses' illness.

6.3 Information and Advice

Problems

Participants stated that they were not experiencing any problems getting information or advice, nor did they have any problems knowing whom to contact for information and advice. One participant stated a few times during the discussion that she had problems knowing whom to contact when her husband first left hospital.

All participants agreed that benefit claim forms were difficult to fill in and they needed help doing so.

“No, it was difficult at first but it is getting better – who to contact and all that.” EL

Who to contact

Participants felt well supported in terms of services (e.g. from Social Services, doctors, hospitals, and occupational therapists) but agreed there are problems with "red tape" that would be solved by knowing who to contact in the first place. They felt that there was little point in having information on contacts that could not help the first time they were telephoned. They also felt that once Social Services and the hospital had taken the lead, the rest was then up to the carer.

“Yes, well, it’s knowing who to contact in the first place.” EL

6.4 Sources and channels of information and advice

The carers now made good use of the support services offered to them by Social Services, i.e. the Day Care Centre and a carers' support group. These were the most frequently used sources or channels of information and advice. With respite care provided, participants attended meetings of the carers' group regularly. Here, they were able to share their problems and exchange ideas. The carers were also aware of and made use of their local information centres.

“I always go to the carers’ meeting. You go and there is somebody there that you can tell anything to.” BK

“You all get together and share your views.” EL

6.5 Day-to-day tasks

The most frequent day-to-day difficulties mentioned were the physical demands of handling, washing, dressing and feeding the people they cared for.

“It’s a job to turn him round to sit in anywhere.” EL

6.6 Services, house adaptations and products

The participants felt that they were well supported in terms of services and provision of necessary equipment and changes to the home. These things were provided by Social Services in advance of the disabled elderly person's return home from hospital.

Following this initial provision of support, the participants felt that the rest was left up to them.

“It’s all done from the hospital, when he came home he had everything.” BK

“Well, it was all handled for [my husband] but as time went on, then I began to have problems.” EL

“They [occupational therapist and doctors] got everything for us and asked a lot of questions.” SM

In a publication, the participants wanted information on: transport and mobility; how to use it and where to go to get it; useful products and changes to the home; whom to contact; and where to go to get them and where to get money to buy them.

“Who to contact to get them.” EL

“And where you can get them.” BK

6.7 Design of a printed publication

Form of publication

Participants stated that they would like a publication to provide the information all in one book, not in separate booklets. However, they agreed that they probably would not read such a book, face-to-face verbal exchange of information being the method they were used to. Television and newspapers were suggested as methods of providing the information.

“There lots of information about now, isn’t there. If you come to a place like this [the Day Care Centre], people will talk and tell each other how they get on.” EL

Attracting people to the information

Participants thought that the information could be advertised on Ceefax / Teletext.

Price

Participants felt that, if there were a book, people would not want to pay for it. However, two of the participants were willing to pay £2-£3 to buy it if it contained information that they really wanted. One participant could not read English.

6. 8 Most important point

Participants agreed that the most important point mentioned in the discussion was where to go to get information.

7 Summary and conclusions

7.1 Difficult day-to-day tasks / biggest problem

The most difficult day-to-day tasks for participants were those that they found the most physically demanding in terms of strength, flexibility, sustained effort, and mobility. For the majority of participants their biggest problem was carrying out those difficult day-to-day tasks.

7.2 Providers of Information and support

The elderly and disabled elderly participants exhibited a general lack of awareness of the various organisations available to them that provide information, advice and support. Despite the vast proliferation of information on practical help, services, health, benefits and equipment, the majority demonstrated a general lack of knowledge of its existence and how to access it. Some had a single source of information and advice that they used. Participants felt it was important to know who to contact and where to go for information and help. Feelings were strong and polarised on whether Social Services are a good source of help and whether GPs are a good source of information.

Carers initially felt well supported in terms of services and practical help. Later, however, feeling left to cope by themselves, they needed information on whom to contact for help. They now felt well supported in terms of information and advice from their carers' support group.

Printed information was often ignored, elderly people preferring to speak to an informed person and carers preferring information exchange with other carers. Face-to-face contact appeared to be important, particularly for carers. Correct information on contacts is important: when seeking information, elderly, disabled elderly people and their carers, like everyone else, want the first person they contact to be able to answer their questions – they do not want to be passed on to someone else, then someone else, and so on.

7.3 Information needed

The elderly people wanted to know:

· whom to contact and where to go for information and help in terms of services, finance, health, practical help, home adaptations, and useful products;

· both national and local contacts;

· their entitlements to help, particularly in terms of money and services.

Carers wanted to know:

· who to contact and where to go for help, when needed.

7.4 Printed publication and other forms of information provision

Elderly people wanted a single slim book or booklet that:

· was simple and easy to understand;

· had large print text;

· was divided into sections;

· had a simple index;

· contained photographs showing elderly people using products.

Carers:

· felt that they would probably not read a book and suggested television and newspapers as alternative means of getting information;

· preferred to get information and advice by face-to-face contact with other carers.

Various concerns were expressed in relation to presenting the information in the form of a printed publication (keeping it up-to-date, providing details of local sources of information and support, price, whether it would be read). These concerns, together with the points made in Section 7.2, above, suggest that a printed publication may not be the most appropriate method for providing information and advice to elderly, disabled elderly people and their carers.

This series of focus groups gave a clearer picture of the needs and problems of elderly, disabled elderly people and their carers in terms of information, and also support in general. The findings provided insight into the major points that the questionnaire survey should be addressing. Consequently, the original aim (as described in Chapter 3 in this part of the report) was broadened for the survey to encompass the needs and problems identified in the focus group work.

7.5 Methodological issues

The focus group investigation identified a number of important methodological issues concerning using disabled elderly people as participants. Performance deficits observed were consistent with those expected due to the declining sensory, perceptual and cognitive abilities associated with advancing age (see Part 2, Section 7.2). Nevertheless, considerable care and patience, both in terms of running the focus groups and analysing the resulting data, enabled useful information to be obtained. Major needs and problems in terms of information and support were identified and the information generated by the focus groups was effective in aiding the construction of survey questions. As Krueger (1994) states, focus groups are robust: major themes tend to surface despite difficulties. By using focus groups together with surveys, this combination of qualitative and quantitative methods make a powerful tool for obtaining information about how people think and feel.

Future researchers will need to take these methodological issues into account when planning, designing and running focus groups with such participants. A paper submitted for publication in Applied Ergonomics, titled "Running focus groups with elderly and disabled elderly participants" describes the lessons learned from the focus group work in this study