Table 3 List of barriers of carrying out the PROBE study

Instructions

Some parents or caregivers did not understand they were being asked to also complete the survey for themselves to serve as part of the control population. Similarly, some participants were not clear if their parents or caregivers could help them to fill out the questionnaire. Further clarification in the instructions was suggested.

Dissemination method

When the study was conducted as part of a meeting, and participants were asked to return surveys to a booth after completion, most never returned them despite labels requesting them to do so. Likewise, it was noted that handing it out in a meeting and asking people to return by mail is not an effective strategy as the return rate is low. It was recommended to have a dedicated time allotted to completing the survey when being conducted within an NGO meeting rather than distributing and collecting later.

Electronic completion

PDF format of the survey not designed to complete on a computer. Respondents required to print to complete surveys disseminated electronically. An on-line version of the survey was suggested. Also, low response for surveys disseminated via social media or email possibly due to summer holiday.

Time required

Conference participants were reluctant to complete what they perceived to be a time-consuming survey, when they had already completed several evaluation forms at the same meeting. Recommendation to NGOs to manage the total number of surveys conducted in one meeting. Despite the overall time to completion of ~ 15 min, a couple of people still found it long and/or daunting.

Ethics approval

Human research ethics committee took a long time for the approval (one country only). Longer lead time to prepare for implementation of the survey is needed if ethics approval will be required.