The KIS team worked with South London and Maudsley (SLaM) NHS Foundation Trust, and PPI representatives to develop the questionnaire.
The questionnaire can be used by health service providers and any organisations that carry out PPI activities, who would like to assess the experiences of service users and carers who take part in those activities.
The questionnaire is theoretically drawn on the 4PI National Involvement Standards (which encourage people to think of involvement in terms of: principles, purpose, presence, process and impact), and its development was informed by review of the literature, and feedback from experts in the field.
The questionnaire includes a brief Introduction, and a total of 31 questions (i.e., 22 about the ‘experience of involvement’, and nine about ‘demographic background’) which would take approximately 20-25 minutes to complete.
The identification of the experience of involvement questions went through an intense iterative process within the research team. Clarity and pertinence of the items were explored in a focus group with service users and carers as research participants. Also, the accessibility review was tested in a small pilot.
In addition to the questionnaire, the team developed an accompanying Guide which provides information about the development of the questionnaire, and offers recommendations for how it could be used, and suggestions for improving its accessibility.