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Clinical Advice for the Provision of Breast Cancer Services

SECTION 5 Documenting service user experiences This section focuses on the documenting service user experiences stage of the cycle of user involvement. These stages include investigation, diagnosis and treatment. Patients experience the cancer journey in different ways, and for some of them, medical procedures are not the most significant markers of their experience of cancer. However, the concept of the cancer journey provides a useful way of thinking about the likely physical, psychological and social impact of cancer for different people at different stages.

When collecting information from service users, it is important to be sensitive to all of these factors. The choice depends on the type of service users involved, the resources available and the type of information that is being sought. Two further methods of collecting information are focus groups and interviews. Both of these might be more useful than questionnaires for sensitive subject matter. You can use them to gather information from groups of people with similar backgrounds, or to explore multiple perspectives with groups composed of people from a range of backgrounds.

Documenting service user experiences 59 Introduction Patients and carers are the experts in receiving health services, just as health professionals are the experts in providing them. There are two main aspects of investigating service user experiences. Here we look at ways of capturing the experiences and needs of those receiving services, while in Part 1, Section 6 we focus on involving service users in evaluating the effectiveness of services.

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The cancer journey Before looking at possible methods for documenting service user experience, it is useful to consider the different stages of medical care that people with cancer are likely to pass through. Not all of the different stages of medical care relate to every person with cancer. The first stage is investigation, when a person is referred for specific tests to find out whether they have cancer.

Following the tests a decision will be made as to whether or not the person actually does have cancer. National Cancer Alliance, Oxford. Different types of treatment will be discussed with the patient and a decision made about what to do. This leads to the treatment stage, which can include surgery, radiotherapy, chemotherapy or some combination of these. Treatment often takes place over a period of time and may involve different medical specialists.

It can take place in different clinics or even in different hospitals.

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After being treated, the person who was diagnosed with cancer is asked to see a medical specialist at regular intervals. At these meetings the doctor will check to see whether there is any evidence that the cancer has returned. This stage of the cancer journey is called monitoring, and it can last for a long time. For these people the cancer journey ends here.


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If the cancer returns or is found in a different place to that where it was initially diagnosed, the diagnosis of metastatic or recurrent cancer is the next stage of the cancer journey. This can lead to another treatment stage.

For some people there will be no cure for their cancer, and treatment is about reducing pain or helping them to live longer. This is known as palliative treatment. Many people who are being treated for metastatic or recurrent cancer will also receive specialist pain treatment, and sometimes this is called palliative care.

Written materials, including writings by people with cancer, often provide useful insights, as can creative arts, including theatre and film. When seeking to collect specific information for a particular programme of service development, the use of a combination of techniques can often improve the range and reliability of the data. When asking service users about their experiences, it is important to be aware of the emotional issues that may be raised and to provide appropriate support.

Documenting service user experiences 61 Focus groups What are focus groups? A focus group is an organised discussion with a small group of people using their experiences, feelings and beliefs to focus on a specific topic. The main aim is to encourage discussion of a particular topic among a range of service users, in order to collect information on opinions, beliefs, experiences and attitudes. Groups usually tend to last for between one and two hours.

An important feature of this technique is the interaction between participants. The most crucial role of a facilitator or moderator is to channel the discussion. Ideally, a group should be repeated several times with different participants, using the same framework of topics. Why use focus groups? Focus groups are a good way to collect a large amount of information in a short time. Focus groups are particularly suitable for discussing sensitive topics, and can be used to explore and develop consensus around an issue.

When might focus groups not be useful? The best size for a focus group is 6 to 10 people. It is almost impossible to obtain a representative sample of people in any focus group. Therefore focus groups are not suitable if you want to make definite statements about a wider population. Dissemination activities An alternative or back-up to tape recording Transcribing, sending out invitations, background materials, etc. How to run a focus group Focus groups involve a lot of organisation, so you need to start planning several weeks before you aim to hold a group.

We have set out a summary Documenting service user experiences 63 of how to plan a group below see Part 2, Section 2D for a more detailed description. Running a focus group: summary of procedure 1 Define your aims 2 Identify the participants 3 Find a facilitator 4 Prepare a script 5 Make preparations 6 Run the group 7 Analyse the data 8 Evaluate and disseminate Be clear about what you want the focus group s to achieve Who should take part?

Consider social and demographic characteristics as well as those relating to the experience of cancer and the organisation of cancer services Effective facilitation is essential to a good focus group. This involves good communication skills and an awareness of group dynamics.

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Preferably this person should be neutral i. Book a suitable venue, taking into account comfort, size and access Be there early to welcome people as they arrive. Tape record the proceedings and arrange for someone to take notes Use content analysis to identify themes and interactions Look at how it worked and what you found, using both qualitative and quantitative methods. We chose a focus group as the most appropriate method because it would enable a semi-structured discussion involving 8 to 10 participants.

All members of the user involvement group were invited, so the potential participants were self-selecting. We developed a topic guide from a review of previous research in order to provide a general structure for the groups. Two focus groups were held at the local cancer service offices, with a total of 16 participants. The groups were taped, transcribed and then analysed for content. The following key themes emerged from the groups.


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  • We disseminated these key findings in several ways, including a project report, conference presentations and peer-reviewed publications. They can be divided into three main categories. Each type of interview has advantages and disadvantages. In general, the less structured the interview, the greater the resources required in terms of the time needed to conduct the interview, the level of interviewer skill, and the difficulty of analysis. Documenting service user experiences 65 Why conduct interviews? Interviews are a good way of obtaining in-depth information on complex subjects.

    Their one-to-one nature makes them suitable for dealing with sensitive subjects in a confidential way. When to conduct interviews Interviews are often conducted at the beginning of a study in order to identify themes for further investigation. For example, they are a good way to develop the content of a questionnaire.

    When might interviews not be useful? In some instances, interviews might not be useful.

    Improving Cancer Services Through Patient Involvement

    For example, they may not be suitable if you want to collect information from a large number of people because they often require a lot of resources, particularly time. Sound quality, microphone positioning How structured should it be? To send to participants For analysis and report writing Internal or external? An alternative or back-up to tape recording Transcribing, sending out invitations, background materials, etc. How to conduct interviews Below is a summary of how to conduct interviews for a more detailed description of this method, see Part 2, Section 2E.

    Consider social and demographic characteristics as well as those relating to the experience of cancer and the organisation of cancer services Develop an interview schedule Identify key themes from the literature and consider pilot interviews. Structured interviews will usually require a greater number of questions Prepare a script It is important to use the same form of words for all of your interviews Choose venues Offer participants a choice of venue, including somewhere neutral. Also consider the safety of the interviewers Conduct the interviews Taping interviews is often the best option.

    It is important to offer interviewees any support they might need Analyse the data Use content analysis to identify general themes and specific quotes Evaluate and disseminate Look at how it worked and what you found, using both qualitative and quantitative methods.