Table 4 Five key PRES domains [17, 18] with additions (bold) from synthesis of included studies results
From: Paediatric eye and vision research participation experiences: a systematic review
Domains | Dimensions of domains | Examples provided | Authors’ recommendations |
|---|---|---|---|
Relationship with research staff | Extent to which content and character of interactions with research staff meet or exceed participant expectations | Friendliness Professionalism Knowledge Approachability Helpfulness Respectfulness Responsiveness “Informativeness” “Appreciativeness” | Staff have appropriate training (support) and sufficient time to build relationships |
Quality and timeliness of information | Range of formats and media | Accessibility and breath of formats to suit needs and expectations, e.g. written, verbal, video, online, SMS | Ensure the right information is available in the right place at the right time as participants proceed through the study |
Content, accuracy and comprehensiveness | Pre-consent information (Participant information sheet (PIS)) General information about the health condition ‘Practical’ process information, e.g. appointments, what to expect, where to be, when and how Updates and progress of the study Personal information, e.g. test results Overall study results | ||
Responsiveness | Responsive to questions | ||
Engagement with diverse participant motivations | Extent to which study design/delivery satisfies a range of differing motivations for participation: ▪Altruistic ▪Health related ▪Opportunity for (relatively) flexible treatment options ▪Opportunity to relinquish personal responsibility for unforeseen effects whilst trying new treatment ▪Material incentives designed in by researchers | Altruistic Wanting to help others Health related Improved monitoring and care of own condition Hope of improvement in personal medical condition Improved understanding of personal condition Opportunity for (relatively) flexible treatment options Join randomised controlled trial (RCT) with a chance of receiving trial intervention, always with the freedom to withdraw (and potentially seek treatment off study) Join RCT and be randomised to non-intervention, but still have the opportunity for intervention later Opportunity to relinquish personal responsibility for unforeseen effects whilst trying new treatment RCT – willingly surrender to random allocation of treatment Material incentives designed in by researchers Thank you materials Condition specific equipment/servicing of equipment | Actively appreciate participants motivations |
Study organisation | Extent to which study and intervention design/delivery accommodates participants’ time, monetary and physical/emotional costs | Appointment scheduling—frequency, length of time, flexibility Waiting times in clinic/between clinics Assessment burden/discomfort/distress Monetary expenses and how/when incurred/reimbursed Access including location proximity/convenience (any flexibility), travel and parking costs/time/burden Access for those with disabilities (visual impairment, wheelchair access, etc.) Unpleasant side effects or implications of intervention Lifestyle adaptions to accommodate intervention | Involve patients and the public in the earliest stages of the study and intervention design, to identify and mitigate factors which may contribute to adverse participant experiences ‘Walk-throughs’ to carefully consider participants’ pathway from pre-consent, through all study visits |
Study environment | Extent to which research environments meet participants’ preferences and expectations | Noise levels Ambience (calm/busy) Attitudes of others (non-research related) in the environment Availability of refreshments | Carefully consider the effects of the environment participants will be moving through |