Patient Public Involvement
“Helen aims to improve parent experience through supporting the process of decision-making & has put parents at the centre of her research” Parent
What is PPI?
PPI stands for Patient and Public Involvement. This involves members of the public, patients and carers in developing NHS research in a variety of ways. It helps to improve the quality of research by involving experts by experience who can provide unique insight in terms of both enhancing study designs and ensuring that research which is carried out is acceptable to those who are involved in the research study and meaningful to those who may benefit from the study outcomes. Visit INVOLVE for more information on patient public involvement: www.invo.org.uk
“As a parent myself, I see the value of this research and want to be sure it’s useful & relevant for future parents” Parent
REDMAPP PPI Group
The PPI group was developed following engagement calls at the Solving Kids’ Cancer Neuroblastoma Parent Education Conference in 2017 and on social media charity, facebook and twitter pages. The group will continue to meet twice a year throughout the study.
The group consists of 5 parents/carers (mothers, fathers and grandparents). For REDMAPP to be successful, it is essential the study has continuous input from those who have experienced making these difficult treatment-related decisions.
PPI involvement so far
Study design involvement:
Influenced how Phase 1 is introduced to parents, with recruitment to take place after they have made a decision about their child’s treatment, to ensure parents do not have added pressure.
In light of COVID-19 and difficulties with recruitment through hospitals, study amendment was made which enables parents to self-refer to the study.
Identified where there is overlap in treatment decision-making between parents of children with relapse and refractory disease. In July 2021 a study amendment was made which now enables parents of children with refractory disease to participate.
Timing of interviews
Interviews should take place within 2 weeks of a treatment decision being made. The PPI group felt this allows time for family adjustment and will maximise parent input across a range of different families. Additionally, they suggested conducting interviews following any treatment decision made to ensure parents have already made their treatment decision and that the details of that process are still fresh in their memory (rather than having set time points for interviews as originally planned).
Practicalities and ethical considerations
To minimise parental burden and maximise recruitment, interviews will be planned around parents’ availability with the option of being face-to-face, telephone or video call. Interviews will be paused or stopped if a parent becomes distressed and appropriate support provided. This will be a healthcare professional based at their child’s treatment centre in Phase 1 and provision of information leaflets through charities and support networks in Phase 2.
Review and edit participant information sheets, consent forms and interview guides. For the interview guides it was important the questions asked are appropriately worded being sensitive to how parents may be feeling having just made a treatment decision and have the right tone so that they are a guide to having a conversation about how a decision was reached.
review and have input into the design of the interview questions to ensure they are meaningful and appropriately phrased and worded.
Ongoing PPI involvement:
Development and testing of decision-aid
Input on developing aspects of the decision aid with the steering group and study team. They will be involved in testing the decision aid to assess its practicalities, how easy it is to use and understand ready for application in real life.
Parents will lead dissemination with charities, on parent social media platforms and at the annual Solving Kids’ Cancer Neuroblastoma Parent Education Conference. PPI members will have the opportunity to co-present the study at conferences.
PPI Meeting Latest News
08.05.21 Virtual meeting via zoom: Study update, discussed the theory and literature on decision-making and how this relates to parents who are making treatment decisions, discussed plans for the literature review on ‘Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer’ and the groups involvement with this
19.09.20 Virtual meeting via zoom: Study update, discussed potential study amendments in light of COVID-19 to support recruitment, reviewed study social media outlets and identified ways to improve these
07.03.20 Premier Inn Meeting Room, London Victoria: Study update, reviewed REDMAPP research study website, discussed ideas to support recruitment for phase 1
22.06.19 Premier Inn Meeting Room, London Victoria: Co-designed interview questions, parent facing materials (participant information sheets, consent forms)
10.02.18 Malmaison Hotel, London: Discussed how parents make treatment decisions, what may help to support parents in doing this