Using the Patient Voice to shape undergraduate nurse education.


When did you first introduce the innovation?

Between 12 and 24 months ago

Please describe the innovation you have developed

The School of Healthcare Sciences at Cardiff University and Macmillan Cancer Support worked collaboratively, in appointing an Associate Lecturer for Cancer Care to the ‘cancer team’. The team redesigned cancer education for undergraduate nurses, involving people affected by cancer in the education programme.

This project developed a process of collaborative working between academic lecturers and people affected by cancer.

This provided the opportunity for the students to hear the patient voice, finding out about the patient’s experience, helping them to identifying their needs. This involved an information gathering exercise, the students interviewed and discussed with the patients/carers in focus groups. Each patient was buddied with a facilitator to help guide and support the patient through the small group interactions with the students.

Using the Macmillan National Cancer Patients’ Survey as a guide the cancer experience was divided into the following milestones:

1. Impact of diagnosis
2. Communication and Information
3. Emotional support (including work and finances)
4. Decision making and care planning
5. Treatments
6. Living with and beyond cancer/rehabilitation

These milestones provided a structure to the patient/carer story as well as structure for the students to feedback what they had discovered.

What prompted you to develop this innovation?

Cancer rates have increased over the last few decades and the trend is set to continue. An estimated 1 in 2 people born after 1960 in the UK will be diagnosed with some form of cancer during their lifetime (Cancer Research UK 2015). Fortunately the number of people living with and beyond cancer is also increasing; currently over 50% of all people with cancer are surviving longer than 10 years (Cancer Research UK 2015). The Welsh Government’s Cancer Delivery Plan (2012) offers a framework as part of an ambitious plan to improve not only the quality of cancer services but also the experience of those people affected by cancer.

Macmillan Cancer Support (2013) highlights that health professionals have a lack of insight and knowledge regarding the experience of those who have had cancer and cancer treatments, claiming this is the biggest barrier to widespread improvements in the quality of cancer services. The nursing workforce play a pivotal role in the delivery of cancer services, and therefore nurse education in cancer care is a vital part of achieving the aims of the Cancer Delivery Plan (2012).

In your view, what is it about this innovation that makes it different/important?

The Health Foundation (2011) points out that direct provision of patient care has featured prominently in nurse training. It is not always possible however for the student nurse to explore the patient and carer experience solely from a learning perspective during a placement in the clinical setting (Hutchings 1999). Including the patient and carer voice therefore in an academic setting gives the student nurse the opportunity to hear the patient and carer story, and ask questions to support their learning in a place of safety for patients, carers and the students (Terry 2013). Hutchings (1999) states that this approach enables a shift in power base towards an equal partnership; the patient is seen as an expert and this facilitates mutual respect.

The students were moved and captivated by the patient and carer stories which included what they needed from cancer services and health professionals. They imparted simple messages of the importance of information, communication and coordinated care. The unrehearsed cancer stories from those who had not previously talked to students was disarming and frank in a way that main-lined directly to the student’s compassion, its honesty was memorable. Having the opportunity to listen to more than one story highlighted the parallels as well as the differences in the patient and carer experience, enabling the students to assess the patient and carers needs with an impression of what was most important from the patient and carer perspective.

To what degree has this innovation led to changes in education or clinical practice?

The Nursing and Midwifery Council’s (NMC) new standards for nurse education requires those who plan and deliver nurse training to demonstrate user involvement activities. This project has dramatically change our approach to providing cancer education and has enabled and supported the development with local people affected by cancer. In the future the cancer team plan to work with people affected by cancer to educate and support post registration nurses working in practice.

What evidence do you have of the impact of the innovation?

The innovation was part of a mixed methods evaluation. Students who received the original cancer education (2011 students – control group) were compared to students who were part of the redesigned cancer education (2012 students) and the results demonstrate the students who took part in the redesigned cancer education report significantly more confident in supporting cancer patients and carers compared to the control group.

Student feedback:

‘The cancer patient day is good, emotionally draining, inspiring. Excellent way of gaining insight into patient perspective and finding out about how people cope and what helps’

‘I think the cancer days have been so good, honestly, I think they’ve been fantastic. …with patients coming in, patient experience, I think they were amazing. …Fantastic being able to speak to them one-to-one, and they kept saying you can ask us absolutely anything and they were very upfront about it…’

‘Impact learning wasn’t it. …hearing it from the patients themselves. … They didn’t hold anything back, we were really lucky. …everyone was on the edge of their seat, really listening, and I think everybody asked a question. …if that continues, you’ll probably get a lot more students going into cancer care.’

To what degree has the innovation been disseminated in your organisation or elsewhere?

School of Healthcare Sciences: CNF Module Leaders Away Day 02.06.15
Enhancing Palliative, Emotional and Supportive Care: Research Theme Meeting.

8-10 May 2015 European Association of Palliative Care May – Copenhagen Denmark

Journal Submission:
European Journal of Nursing Studies entitled:
An innovation in curriculum content and delivery of cancer education within undergraduate nurse training in the UK. What impact does this have on the knowledge, attitudes and confidence of delivering cancer care for?

Please provide details of any plans you have to disseminate the innovation in the future.

South Wales Network Cancer Patients Conference 30.09.15.

UKONS (UK Oncology Nursing Society) Annual Conference 13-14November 2015 – oral presentation.