an evaluation of patient and carer involvement in a renal nursing

Thomas N1, Chamney M2, Cook T2, Das R2, Gracey B2, Gracey L2, Jones J2, Loud F3,
Muhammad S2 and Noble H4. 1 London South Bank University; 2 City University London;
British Kidney Patients Association; 4 Queens University Belfast
INTRODUCTION: A Kidney Research and Education interest group was established in 2010
by lecturers and researchers at a School of Health Sciences in a UK University. A core value of
this group was patient and carer participation in all aspects of the group. To our knowledge this
was the first initiative of its kind in Higher Education, specifically in the field of kidney care.
LITERATURE REVIEW: The value of involving patients and carers in the education of
health and social care professionals has been widely recognised. Activities include curriculum
development of programmes, classroom teaching and the assessment of students. Involvement
of patients in education can challenge well established perceptions and attitudes of health
professionals, educate students to adopt a more user-centred approach and produce practitioners
capable of delivering improved and more relevant outcomes for patients and their carers (Tew et
al., 2004). A review by Staley (2009) identified the impact of public involvement in research,
including: improving the research design and relevancy of research questions; developing
ethically acceptable research; improving recruitment and response rates; enhancing the
collection and analysis of data; and enhancing dissemination of findings in an accessible way.
METHODS: A patient representative from a national kidney patient organisation was invited to
join the group and help develop the initiative, write the terms of reference for the group and
develop a recruitment strategy for patient and carer members. A launch event was held in
Autumn 2010 and subsequently representatives from local and national Kidney Patient
Associations joined the group. Twice-yearly meetings have been fully funded by a patient
organisation and this funding is used to reimburse the patients and carers for their time and
expenses, and also to pay for meeting costs. Providing payment for the patients and carers is an
important way of recognising and valuing their expertise and contribution to the initiative, with
the amount of payment in accordance with national guidance (INVOLVE, 2010). A further way
of acknowledging the contribution made by the patients and carers is in their Honorary Lecturer
status, with a contract and access to University facilities, such as the library.
RESULTS: Since 2010, the group members have been involved in educational initiatives such
as face-to-face teaching with undergraduate student nurses and curriculum development of the
undergraduate programme. In 2012, when students were asked on whether it was useful it was
to have a patient/carer in the teaching session, 59/60 and 46/48 said yes. Comments included
“Really useful. It is totally different to get the personal experience” and “Brilliant meeting
someone who has experienced organ donation and disease.” In addition, group members have
contributed to two grant applications, helping to address methodological issues and taking on
key roles such as attending/chairing advisory committees (one NIHR grant application was
successful) and in writing a patient involvement chapter in a renal nursing textbook.
CONCLUSION: Our results have shown a positive impact of patient and carer involvement in
education and research. However as one member of the group has explained “....the depth to
which patients and their partners, carers and families are involved varies greatly and good
practice is not consistently shared” so we aim to share our experiences more widely within the
renal community. In addition it is recognised that more rigorous evaluation of patient and carer
involvement is required, such as an evaluation of students’ knowledge and attitudes before and
after a teaching session. More robust evaluation will provide stronger evidence for this type of
initiative to be replicated elsewhere.
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