A survey on the attitudes of parents with young children on in-home monitoring technologies and study designs for infant research

Remote in-home infant monitoring technologies hold great promise for increasing the scalability and safety of infant research (including in regard to the current Covid-19 pandemic), but remain rarely employed. These technologies hold a number of fundamental challenges and ethical concerns that need addressing to aid the success of this fast-growing field. In particular, the responsible development of such technologies requires caregiver input. We conducted a survey of the opinions of 410 caregivers on the viability, privacy and data access of remote in-home monitoring technologies and study designs. Infant-friendly wearable devices (such as sensing body suits) were viewed favourably. Caregivers were marginally more likely to accept video and audio recording in the home if data was anonymised (through automated processing) at point of collection, particularly when observations were lengthy. Caregivers were more open to international data sharing for anonymous data. Caregivers were interested in viewing all types of data, but were particularly keen to access video and audio recordings for censoring purposes (i.e., to delete data segments). Taken together, our results indicate generally positive attitudes to remote in-home monitoring technologies and studies for infant research but highlight specific considerations such as safety, privacy and family practicalities (e.g. multiple caregivers, visitors and varying schedules) that must be taken into account when developing future studies.

Before you decide to take part in this survey, it is important for you to understand why the research is being done and what it will involve. Please take the time to read the following information carefully and discuss it with others if you wish. A member of the research team can be contacted via email if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part.
We are currently in the process of designing a new study to investigate how infants behave at home. To help us do this, we want to know what parents would find acceptable and practical. This survey asks for your thoughts on some of our proposed measures. Please note that by completing this survey you are not obliged to participate in our new proposed study. All questions are hypothetical and are designed to help us understand what parents of young children think.
Result from this survey will be used to guide the design of our new study. We might write up the results for publication to help other researchers understand what measures parents might be comfortable with.
Answers will be analysed as a group, and all data will be totally anonymous, without any means of identifying the individuals involved. At the end of the study you have the option to not submit your answers and withdraw from participation. However, as submissions are anonymous you will be unable to withdraw your answers once they have been submitted.

The project has received ethical approval from the Department of Psychological Sciences Research Ethics Committee of Birkbeck University of London
If you wish to seek more information in regards to the survey please contact Laurel Fish via email (ublfis002@mail.bbk.ac.uk).

Information and consent
Smart Suits Study 1. I have read the details of the survey and willingly consent to take part. I understand that I may ask further questions at any time via email. I understand that my answers will remain anonymous and that all the information given will be used to help researchers design studies with parents and infants. If results are written up for publication, no individuals will be identified.
I understand that I may withdraw my consent for the survey at any time without giving any reason and to decline to answer particular questions. Furthermore I understand that I will be unable to withdraw my answers for the survey after I have submitted them as the answers are anonymised.
I understand that all information given will be kept confidential. All data will be identified by a code, with personal details kept in a secure computer with access only by the immediate researchers. I understand my answers will be used to help guide the design of a new study. * I agree I do not agree Due to the development of new technologies, we are able to investigate the behaviour of infants in the home. With such technologies we are able to discretely and precisely measure factors such as heart rate, movement, vocalisations and sleep cycles for extended periods of time. This could help us understand the development of babies who are developing typically, and those who might be more likely to develop difficulties. To help us plan our new study, we want to know your thoughts on studies with young children. Our proposed study will be designed to collect data on babies and toddlers aged 3-24 months. Therefore, if your youngest child is now older please consider the following questions for when your child was between 3-24 months. Please note that by answering the below questions in no way means that you are obliged to participate in the proposed study. The purpose of this survey is to find out the thoughts of parents with a young child to facilitate the designing process of our new study.

Smart Suits Study
First, we would like to know a little about your youngest child and the rest of your Prefer not to answer 5. One of the goals of our study would be to learn more about infants or children with developmental disorders. So, we want to know how families who have experience with developmental conditions might feel about our proposed study.
Our planned study wouldn't help us diagnose particular developmental conditions in children. However, we hope it might help us learn more about the difficulties experienced by children with developmental conditions. Therefore we would like to know if your youngest child has any of the following conditions. Prefer not to answer 7. Does your youngest child's immediate family have any of the following disorders. * Here, we would like to know a bit more about who cares for your child to figure out whether our study would be appropriate for families with a wide range of circumstances. Prefer not to answer 9. Who is the primary care giver for your youngest child on each day of the week? * 10. What is the highest level of education gained by your youngest child's mother? * Primary (e.g. Primary school education) Secondary (e.g. GCSE, A-levels or equivalent) Tertiary (e.g. Undergraduate/Postgraduate degree)

Don't know
Prefer not to answer 11. What is the highest level of education gained by your youngest child's father? * Primary (e.g. Primary school education) Secondary (e.g. GCSE, A-levels or equivalent) Tertiary (e.g. Undergraduate/Postgraduate degree)

Don't know
Prefer not to answer Some of the measures in our proposed study will require the infant to wear 'smart suits'. These are specially designed baby rompers that are comfortable for your child to wear. They are made from special fabric with the technology to measure arousal levels. During the proposed study we will provide all the vests that would be needed for the whole study. Smart suits are machine washable. If your youngest child is now older please consider the following questions for when your child was between 3-24 months.

Smart Suits Smart Suits Study
Here is an example of how the smart suit technology may look.
12. How likely would you be to allow your child to wear one of our smart vests? * Prefer not to answer 13. How long will you be willing to participate in the smart suits part of the proposed study? * Not at all A one off (e.g. for an afternoon or 1 day) Once every now and then (e.g. once a week or once a month)

Continuously for a weekend
Continuously for a week

Continuously for a month
Prefer not to answer 14. How practical would you find dressing your child in the above described 'smart suits' once (e.g for an afternoon or day)? Prefer not to answer 17. Do you have any comments about the proposed smart suits?
Alternatively to the smart suits, during the proposed study we could provide you with stickers that are to be placed on the infants back directly on their skin. These stickers are attached to wires connected to a small device to be carried in the infants pocket. The stickers would measure heart rate and sweat levels to assess arousal levels. If your youngest child is now older please consider the following questions for when your child was between 3-24 months.

Heart rate and sweat response stickers Smart Suits Study
Here is an image of the sticker technology.
18. How likely would you be to allow your child to wear the above described stickers? * Prefer not to answer 19. How long will you be willing to participate in the stickers part of the proposed study? * Not at all A one off (e.g. for an afternoon or 1 day) Once every now and then (e.g. once a week or once a month)

Continuously for a weekend
Continuously for a week

Continuously for a month
Prefer not to answer 20. How practical would you find using the above described stickers as a one off (e.g. for one day)? * Practical Somewhat practical

Somewhat impractical
Not at all practical Prefer not to answer Comments 21. How practical would you find using the above described stickers over a longer time (e.g. for a week/month)? Some of the measures of the proposed study will require the infant to wear a wireless wrist/ankle band. This band would be used to measure movement and sleep/wake cycles. If your youngest child is now older please consider the following questions for when your child was between 3-24 months.

Wrist/ankle bands Smart Suits Study
Here is an example of how the wrist/ankle band technology may look.
23. How likely would you be to allow your child to wear a wrist or ankle band during the day? * During the proposed study, some of our measures may involve video recording. This will allow us to investigate their behaviour and environment in the home. If your youngest child is now older please consider the following questions for when your child was between 3-24 months.

Body cams Smart Suits Study
Here is an example of the size of the proposed body camera technology 29. How likely would you be to allow your child to wear a body camera attached to the smart suit (to record your child's environment) during the proposed study? Alternatively, in our proposed study, we can use camera technology which automatically analyses the video, such as the number of faces the child sees and the luminance levels. Therefore, the only data our research team will see is an output of numbers, as opposed to actual video recordings.
33. If we were to automatically analyse video data (as described above) how likely would you be to allow your child to wear a body camera attached to the smart suit (to analyse your child's environment) during the proposed study? During the proposed study, some of our measures may require the infants to wear small wireless audio devices. This is so we can measure vocalisations in the home. If your youngest child is now older please consider the following questions for when your child was between 3-24 months. Alternatively, in our proposed study, we can use technology which automatically analyses the audio recordings, such pitch of voice and number of vocalisations. Therefore, the only data our research team will see is an output of numbers, as opposed to actual audio recordings. Thanks for completing the survey. We will share results through the Birkbeck Babylab newsletter.

End of Survey
Smart Suits Study