Is research done by a parent or guardian to study their child “self research”?
(And more concretely… would it fit in the Keating Memorial Self Research activity?)
Children sometimes have challenging issues (e.g. health conditions), and parents/guardians are sometimes faced with making choices on how to manage those things, monitor the outcomes, etc. At the other end of the spectrum, I can imagine parents curious about benign questions regarding a child’s experience of the world, etc.
This question has arisen implicitly and explicitly, and I had some thoughts I shared in the #self-research channel in our community Slack, but I’ll hold off on re-posting them. I’d really like to hear what thoughts others have about this.
Okay – I’m copying over my thoughts from Slack. This is my personal thoughts & I welcome others!
No to non-parents working with kids; that’s research about patients, just as with adults. Maybe to parents doing research with their own children.
I think some core questions are…
is this merely research on another person because you have the opportunity to study them?
is the motivation related to child’s wellbeing and/or caretaking decisions?
is the child given as much autonomy as possible?
I consider “self research” as a category to support the autonomy of individuals to engage in research about themselves. But there are people that don’t have autonomous capacity in full; to what extent they have it depends on age and disability. Parents and guardians are special stewards. (NOT therapists, etc.)
Ethical reasons to allow self-research comes from the individual’s capacity to understand the risks inherent in research they devise, and the inherent right for any individual to take a personal risk/cost to fulfill their own curiosity and seek answers. The latter justification isn’t present for parents: you don’t have an inherent right to place your child through risk/cost to satisfy your own curiosity.
BUT parents also have a responsibility to make the best decisions for their children, and we should support their capacity to seek answers for what is best. Some decisions are unavoidable – and which is best? Refusing empiricism is surely a worse choice, when a choice must be made regardless. (To make this less theoretical: many insulin loopers are parents operating the devices for their children. They want to the best possible treatment for their children’s T1D.)
Somewhere in between these is “harmless research for curiosity”. Is “people watching” self research? (It seems like it isn’t?) On the other hand, I think we could reframe many things as “self-research that tracks a parent’s experience of their own child”. (Do people smile at me when I smile at them? is that a self-research project? or am I studying them?)
I think we should trust parents to weight these ethical reasons themselves: that is their job. But hopefully the framing helps them think about it. To the extent that children are capable of autonomy, I think “self research” done by parents must incorporate the children – otherwise it is merely “research on another person because you have the opportunity to study them”.
I think Kirstie hasn’t registered for the forum, but I’ll share this thread with her! I’m sure in her work around the co-created project on autism they are encountering a very similar issue! And I agree, with your points above. I think the main question is what the self-research is being done for, especially whether it is done to support doing better ‘interventions’ in their own parenting practice. If that’s the case then it seems to me that the self-research is more about developing a better understanding of the own parenting to improve the outcome on the child?
I agree with you about therapists not being self-research and parents being a maybe. Part of the issue regarding self-sovereignty of data is minors and also mental capacity, almost like guardianship which also has different laws in each country.
There are many other things that I do for tracking myself that I monitor open humans for regarding direction besides the general fitness metrics (celiacs, blood sugar, apnea, etc.)
I thought I would ask because I invested in a hippotherapy business along with having a special needs child. I used to carry binders of data, videos, and pictures for the therapists and doctors. Part of the issue is the doctors/therapists are basically qualitative “sensors” for the data tracking of the children.
One of my personal passions is to create a system whereby parents can track from early childhood development because before age 5 for brain development is crucial. It has been proven that proper early detection and therapy can raise a child’s IQ with autism around 20 points. I work with one of the leading professors on disabilities for cities and ambassador of disabilities to the UN. I believe we are on the cusp of self-sovereignty and digital guardianship innovation.
Concerning your point about parent’s experience of their own child, this is a recommendation from Temple Grandin’s mother to parents of children with autism and CBT and stress therapy is often recommended to parents because tracking their own psychology can affect the child achieving an important psychological development stage of self-regulation.
I have worked with parents and children where the children are completely incapable of working with their own data alongside the parents and vice versa. That is one of the reasons I enjoy reading and learning from everybody in open forums. It is not a binary situation regarding data tracking and self-sovereignty.
