RT Journal Article
SR Electronic
T1 Ethics and patient and public involvement with children and young people
JF Archives of disease in childhood - Education & practice edition
JO Arch Dis Child Educ Pract Ed
FD BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health
SP 195
OP 200
DO 10.1136/archdischild-2017-313480
VO 104
IS 4
A1 Sarah Jane Mitchell
A1 Anne-Marie Slowther
A1 Jane Coad
A1 Shazaan Akhtar
A1 Elizabeth Hyde
A1 Dena Khan
A1 Jeremy Dale
YR 2019
UL http://ep.bmj.com/content/104/4/195.abstract
AB Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work.