Table 1 Five domains which play a significant role shaping participants’ research experiences, identified from participant feedback [17, 18], with similar themed strategies recommended by Given et al. [19] listed for comparison
From: Paediatric eye and vision research participation experiences: a systematic review
Domains | Dimensions of domains | Examples provided | Authors’ recommendations | Strategies recommended by Given et al. 1990 [19] |
|---|---|---|---|---|
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 | Staff ability to enhance the desire of subjects to participate Staff ability to reflect the knowledge and importance of the project Staff have consideration and concern for others Staff have excellent communication skills Staff have enthusiasm and commitment to the project Pre-trial staff training Continuity of staff to establish trust |
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 | Ongoing, open communication (including newsletters, publications and presentations) Communication expectations set from beginning Opportunities for questions and clarifications at every contact point |
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 | Access and availability of staff Contact number given Prompt response to contact from participants | ||
Engagement with diverse participant motivations | Extent to which study design/delivery satisfies a range of differing motivations for participation: ▪Altruistic ▪Health related | 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 | Actively appreciate participants motivations | Project logo and theme to establish project association Project logo and theme used on: letters, gifts (coffee mugs, desk calendar, clock, pens), certificates, questionnaires, newsletters, thank you notes, birthday cards, sympathy cards Statement of appreciation for participants time, contribution and awareness of time and energy they have given to the project |
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 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 | Practice and review simulated study situations Supervision of junior staff by senior staff member Frequent de-briefs for delivery staff to discuss issues and problems and help maintain consistency, enthusiasm and commitment to the project Respect for participants’ time Flexibility in scheduling research visits Follow up if visits missed |
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 |