Background
In 2018 a group of researchers from PCCS Study Group carried out a research prioritisation exercise on behalf of the society. The aim was to determine health care professionals (HCP) research priorities within PICU to ensure future research is directed to the questions viewed as the most important within our field. The group would now like to engage with children and their families who have experienced a PICU admission and ensure their views are heard.
The purpose of the work is to ask children and young people (CYP) and their families/ carers from across the UK and Republic of Ireland (ROI) to complete a survey which features the top twenty research topics generated from the work with HCP. The survey will ask them to rate each for importance. It will also provide them with an opportunity to highlight questions or topics they feel are not represented.
Aims:
- Establish the views of service users on PIC HCP research prioritisation exercise
- Provide supporting evidence to PIC researchers submitting national, peer-reviewed funding applications, of service users’ opinions on research questions
- Identify any new topics or questions for research which were not identified in the work with HCP
How can the survey be accessed?
The survey will be available to the public in two ways:
- Paper-based survey to inpatient CYP / families on PIC / within hospital following PIC discharge in UK/ROI sites that have agreed to support the work. The surveys will be self-report with a pre-paid postal return. All copies will be supplied to units and all postage provided.
- Electronic survey (same questionnaire) will be available on SurveyMonkey. The link will be advertised through local posters (which will be supplied), through relevant charities and on social media, including twitter.
The survey will be carried out over the Summer 2019.
Who is carrying out the work?
The work is being conducted by a group of researchers from PCCS Study Group (PCCS SG) and has been supported by a PCCS Research Grant (01/06/2019). The project has been reviewed and classed as public engagement work rather than research. No research ethics committee or local R&D approvals are therefore required.
What will happen after this consultation?
Responses will be compared to those from HCP to review similarities and differences. We are also interested to see if there are any new questions or topic areas raised by patients and families which HCP did not recognise. The results will be disseminated to PCCS members to help researchers know which areas we should focus research on. We will also feedback the findings to the NIHR so they are aware of priority areas within the PICU field for future funding. We will produce a plain English summary of responses which can be disseminated through social media, through charities and through direct contact with respondents if they are willing to provide their contact details.
The link to the survey is:
https://www.surveymonkey.co.uk/r/researchonPICU
If you have any questions or comments please contact bwc.picuresearchauditteam@nhs.net
