Service User interviews

AIMS

To inform the development of printed and web based information summaries, by exploring service user needs.

METHODS

• A convenience sample of 42 service users were interviewed.
• A semi-structured interview guide was used which asked questions about how useful the information received from the charity had been, how it could be improved and the importance of evidence.
• Interviews were carried out at Penny Brohn Cancer Care, the user’s own home or by telephone.
• Interviews were audio recorded, transcribed and analysed using Nvivo7 for thematic content analysis.
• Codes were developed by the interviewer and a second researcher.

RESULTS

Demographics

The sample consisted of 32 women and 10 men. The age range was 36-78 years old with an average of 54 (median). 35 people had a past or present cancer diagnosis, 7 were supporters of someone with cancer.

Previous interest in complementary therapies

About two-thirds of interviewees  had been interested in complementary therapies before their diagnosis (or the diagnosis or the person they were supporting) and others had become interested since diagnosis.

 Reasons for interest in the Bristol Approach

Service users described many reasons for their interest in the Bristol Approach (Figure 1).

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 Figure 1

How important is evidence?

Most participants felt that evidence was important.

‘I mean the problem is that I think one is bombarded with information about you know what’s good for you and what’s not good for you, especially in diet, it’s quite astonishing the range of different opinions, so the more actual substantiated evidence there is the better.’ 
‘I found that very – I can’t think of the right word – comforting I suppose. There’s a sound scientific basis behind the approach, behind the advice. It’s not just flaky theories.’ 

What is evidence?

People discussed the importance of both clinical trials and previous service-user testimonies as forms of evidence. Some people preferred one or the other but many people felt that it was important to provide both resources.

‘Both. I would look for both. I mean I think that personal narratives are really quite important because you can identify with the people there. But it’s nice to feel there is scientific, whatever that means, some sort of scientific evidence to support it as well. So both.’

Useful qualities of information about complementary therapies

There were many factors which were felt to affect how useful a piece of information is (Figure 2).

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Figure 2

Indicators of quality for information on complementary therapies.

People named many factors which they felt were indicators of the quality of a piece of information (Figure 3).

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Figure 3

INFORMATION DIFFICULTIES

• Information overload

Service-users discussed problems associated with receiving too much information.

‘Having cancer is like having a full time job I’m not kidding you – you read so much to do with your cancer that you end up bottle-stop eyed and thinking ‘I don’t know what the hell I’m doing.’’

• Difficulties judging the quality of information

People discussed problems knowing which information to trust, felt to be a particularly relevant issue information when looking for information on the internet.

‘Anyone can put any evidence on there [the internet].  I mean it’s got – like in here you’ve got things where evidence and things like that – are you actually going to look that bit of evidence up and see if it’s true. So you know anyone can say this works and the evidence is this, how do you know it’s true?’

• Physical barriers to information

Several people talked about difficulties in accessing information which were related to their illness. Reasons for these difficulties included stress caused by the illness, a busy schedule of medical treatments or treatment side effects.

‘I haven’t been able to concentrate the same as I would have done since the chemotherapy, so if there’s less on a page I’m better. But that, at one time that would have been fine, but I must admit since I’ve had the chemotherapy it’s taken a while for me to be able to think properly.  So I think if it had been more – I couldn’t swear, it couldn’t have been any more easy language to understand.’

CONCLUSION

• The response rate in the study was low, particularly from ‘Helpline’. It might be expected that users who have had less contact with the charity are less motivated to take part in interviews. It may be the case that the views of non responders to the interview survey are different to those interviewed. 
• Both accessibility and content may differ between different groups or individuals although some methods (such as the use of bullet points, lists and summaries are considered good practice by most.
• To be useful, information needs to be well presented and accessible. It may also be helpful to present information in a broken-down format, using bullet points, lists and summaries of information.
• It appears important to service-users that information on complementary therapies and cancer is supported by evidence. As well as ‘scientific’ evidence from clinical trials, many people view accounts of people who have had experience of a therapy as an important form of evidence.
• The fact that there are people who have been interested in complementary therapies for a long time and people who have had no prior interest in complementary therapies may provide a challenge in meeting different information requirements of these groups.
• Many people may feel that paper based information has advantages over other formats such as web based information.
• When giving out information it is important to be aware of the risk of ‘overloading’ people by providing too much information.
• There may be issues related to people’s illness such as a busy treatment schedule or treatment side effects which mean that they have specific information needs and accessibility requirements.
• These interviews were part of a larger project which is reviewing the information offered by the charity. Results from these interviews have led to several recommendations which include:
  • Some information produced would benefit from being made more accessible and better presented.
  • Care needs to be taken not to overload service-users with too much information.
  • Information should incorporate perspectives of service-users.
  • As well as information on complementary therapies, it is important to provide service-users with information on the services provided by the charity and how to access these.