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Research project: A phase I-II feasibility trial of Cancer Carer Medicines Management (CCMM): an educational intervention for carer management of pain medication in cancer patients at end of life.

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Pain in people with cancer is common, and can cause considerable distress to both patients and family carers. We know that some carers have fears and anxieties about pain medication, and this can create barriers to managing pain medicines and pain itself. Research into carers' needs shows that a top priority is education to help them manage pain medicines. Despite this, there has been a lack of research to develop and evaluate resources for carers on pain medicines management. In the first phase of this study, we have therefore developed an education package for carers through review research into carers' needs as well as talking with patients, carers and health care professionals with expertise in this area. This project is funded by the Dimbleby Marie Curie Cancer Care Research Fund, grant number DCMD-RF-12-05.

Phase I: Developing the intervention

We developed the intervention during 2013, and it is now being tested in our Phase II study.

First, we focused on understanding what might work best by drawing together the evidence across previous studies and looking at other evidence based guidance.

To do this, we asked questions like ‘What information do carers most want?' ‘And in what form?' We drew on our experience of designing education for patients and carers, and also thought about which theories could help us to structure the education being developed. We also observed nurses at work in the community to understand how carers are involved with medicines management at present.

Patients, carers and health care professionals in Hampshire, South Wales and other areas of England and Wales provided their views about this evidence and what else is important to them. Fourteen patients and carers, 3 doctors, 4 pharmacists and 27 nurses contributed their views. Next, we held two workshops where nurses discussed the developing ideas, tested them against their own experience, and worked with us to design the education and support package for carers on pain medicines.

Sixteen nurses with experience in pain medicines for cancer and six carers who had looked after family members with cancer pain reviewed the draft education and support package, and we made amendments based on their feedback and suggestions.

Throughout the process of developing the intervention, we mapped the developing principles and components to the published evidence, evidence based guidance, and the views of the patients, carers and health professionals who talked with us.

Phase 2: Testing the intervention

The education approach has been developed and refined during 2013. In 2014 we are testing whether it has the potential to improve carers' experiences of managing pain medicines.

We also need to know at this stage whether the research will work. For example, can we recruit enough carers? How will they feel about being involved in the education? We will address these aims using a feasibility trial.

12 nurses working with cancer patients and their carers will be recruited: 6 specialist nurses from services in Hampshire and Dorset; and 6 community nurses in South Wales. We have trained 3 nurses at each site to put the education and support into practice. The other 3 nurses at each site are our ‘control' group. Each nurse is recruiting 5 carers who are being asked to complete questionnaires to measure their experience in managing pain medicines, as well as their overall feelings.

Carers are completing these on first meeting the nurse, and 1 and 4 weeks after they receive the package (intervention group) or usual care (control group). A researcher is interviewing carers about their experiences at 1 and 4 weeks and will interview nurses on study completion.

We can then analyse changes in carers' questionnaire scores and carers' and nurses' experiences to assess whether the education and the study might work on a larger scale.

Related research groups

Health Work and Systems
Complex Healthcare Processes
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