by Annegret Dahlmann Door

Annegret and her team were recipients of RDS London’s Public Involvement Fund bursary.

In this blog, Annagret shares how the feedback from children and young people (CYPs) as well as parents has informed study design, costing and ethics applications for two RCT grant applications.

Our public involvement began with a 90-minute Zoom meeting with three researchers, one facilitator, and eight participants who were CYPs between the ages of 11 and 17 years. Four were from underserved groups and four were white. All had myopia and four had previously taken part in a myopia-control research study.

During our first meeting, we discussed two grant applications surrounding the topic of myopia control, one proposing an optical intervention, the other a behavioural intervention.

Optical intervention

Prior to the meeting, we sent out boxes with printouts of the agenda, zoom etiquette, consent forms, our presentations, our questions, dummy sensors (made especially for this meeting), and smarties (which are the same size as an alternative light sensor) – remember to be aware of allergies!

We also sent a link to an animation introducing the research study about the behavioural intervention.

When we asked the CYPs for their opinions, they told us that when choosing glasses, what matters most to them is that the frame needs to look good and that they fit well. Less important are colour and shape of the frame. This will help us ensure that the lenses can be cut to fit a variety of frames.

They told us that the best ways to let families know about myopia research projects are via high-street opticians and via schools. We had already considered optometrists, but schools was an additional opportunity we had not considered.

The children told us that it would be feasible to come to a research clinic twice a year, which is similar to the visits they have with their local optician. They also recommended a flexible schedule and informed us that children often have different activities after school and on the weekends, which might make it difficult to schedule appointments.

We also discussed ways to measure adherence with glasses wear.

Interestingly, two of the young people told us that they only wear the glasses to see clearly in the distance when they really need to, for example for the whiteboard at school. This was very helpful, as we thought that children who are short-sighted wear their glasses all the time.

In addition, teachers ask them to take their glasses off during PE, games and swimming.

As the glasses are thought to work better the more they are worn, it now seems very important to measure for how long the children wear the glasses every day.

We discussed keeping diaries, but with a study duration of three years, the CYPs felt that this would become boring, but that it would be possible to complete a diary from time-to-time for a few days.

We also discussed small temperature sensors that would be worn on the inside of the spectacle frame. The CYPs suggested that we try this out to see whether this would be comfortable and as invisible as possible, because otherwise children would take the sensors off. This was a very helpful comment, and we will pilot the sensor wear.

We also asked the CYPs if they would endorse prophylactic wearing of special glasses to delay the onset of myopia. They were sceptical and said that someone who is not short-sighted would see little point in wearing glasses, and that some might be difficult to convince, because they think that glasses don’t look cool. However, they felt that children whose older siblings and/or parents are short-sighted would understand the problem and would wear glasses so that their own final degree of myopia would be less.

A graph that shows the basic aim of the myopia control treatment – that is to reduce the final amount of myopia an individual reaches – was included in the presentation. The CYPs recommended we include this graph in our information material. This was a very perceptive comment, which made it clear to us that we need to communicate carefully what each child would gain by myopia prophylaxis.

Parents advised that a trial with glasses as an intervention would be preferable to a trial with contact lenses. They felt that glasses for myopia prophylaxis would be a ‘hard sell’ for children, but that they may agree to wearing them for specific tasks, for example, homework, and that they would be more acceptable if older siblings and/or parents are short-sighted. They pointed out that some children like to have ‘fake glasses’, just because everybody else in the family, or their friends, wear glasses.

Behavioural intervention

The CYPs also informed our behavioural intervention around compliance with light exposure.

We suggested dimming their environment during the three hours before sleep time. The CYPS felt that this was unachievable, but that an hour would be possible. Some felt that up to two hours would be feasible in younger children.

They also recommended considering offering a reward for children taking part in the research, to increase their motivation to switch off devices in the evening.

The CYPs also felt that the glasses-mounted sensors are too chunky, may tilt the glasses, may get caught in the hair, and might be embarrassing to wear. They asked whether they could be made smaller, worn on the inside of the frame, and whether children could customise their sensor (colour, pattern, matching the glasses frame).

They also advised that children might wear the sensors if this was only necessary on some days in a month, but not continuously.

Similarly, they felt that wearing the wrist-sensor would quickly become annoying.

They also re-iterated that during physical education, games, and swimming, their teachers ask them to take off all watches and glasses.

We then discussed the assessments we would like to do with the children every six months. The young people were dubious about spit samples, but after additional explanation that the sleep hormone could only be measured on a blood test or a spit sample, they said they would prefer the spit test, and that it would be ok to produce a sample once every six months.

Lastly, we asked what we could do to help families attend regular research appointments every six months, and the young people recommended a reward for the child at every visit.

Advice to researchers

  • Think carefully about the questions that you would like to get answers to: which part of the study can be changed, and which are essential (in which case your question would not be whether you can include them, but how you could motivate participants).
  • Find questions which allow you to tap into the lived experience of your participants.
  • Make your public involvement event as accessible as possible and think of appropriate rewards.
  • Thank participants during the meeting and ask for feedback on the how the meeting itself went so you can make the next one even better – our group were delighted to receive the boxes in advance!
  • If you depend on technology for your event, try it out beforehand! We set up a Zoom meeting with our facilitator, who walked us through the breakout room function, how to record a meeting, and how to use the virtual whiteboard. Also, be aware of the digital divide – offer to do a test session for those who have not used Zoom or an equivalent beforehand.
  • And always remember to keep your participants informed of your progress. We have a follow up meeting scheduled, and we will invite young people from our focus group to join a regular advisory group, have representation on the trial steering groups, help with aspects of qualitative data collection and data analysis, and advise on dissemination to stakeholders. We have also included budget in our grant applications for children and a parent to attend related conferences.

If you would like to know more about how RDS London can support you with public involvement, use our request support form, check out our resources and take a look at our bursary schemes.