Ethics & integrity – How do we make it meaningful?

crying child

Judging from the nature of this post, you’ll probably gather that I’m reflecting on how to plan and carry out research that is ethical. The bigger challenge is being able to reflect this process in an application that is useful for purpose and relevant whilst steering clear of a tick box, paper-pushing exercise.

 

Actually, I’m noticing that the topic of ethics appears to be something of a life choice (no, seriously). A stroll down my local supermarket isle uncovers ‘ethically sourced food’ and ‘free range eggs’. In another context, healthcare, education and social care workers all sign up to practicing within the remits of their governing bodies, safeguarding children through our professional roles, whistle-blowing and engaging in regular training practices to ensure we are up to date with relevant policy. It appears that we are all working harder to protect our knowledge and experiences of protecting others.

 

Research ethics committees often seek to understand how projects overtly demonstrate informed consent but this is trickier when children cannot sign a form or understand the immense jargon-ridden language we splatter.

“I can see from your high tone and asymmetric tonic neck reflex that you are telling me to get lost!”

Do we then work with what we have and assume consent? Of course, not. But isn’t one person’s perception of a child’s non-verbal assent just as subjective as the next? If a neuro-typical child says ‘yes’ just to please an adult, who’s to say that a non-verbal child will respond any differently? Questions are raised in terms of gauging authentic views that use trustworthy practices for seeking them.

 

I’ve had some really valuable guidance from lecturers and course peers, especially on the process of working with children and young people, not to mention copious literature on the topic of sociological research. Most discussions on the topic are increasingly suggesting that working ethically is a highly dialogic process that spans the life cycle of all research and beyond. Asking questions, even when there is no clear answer.

 

crying_child

 

Researching with, not for.

child with thinking cap

In this post, I had intended to sum up my views on why AAC design research should start to involve children who are direct beneficiaries of AAC technologies.

It has long been established that children are expert at being children.  Try as we might, therapists, teachers, engineers and designers can only go so far as to have a view about what children might think about a specific idea or artifact.  We can’t actually assume we are any closer to creating appropriate and usable technologies unless we include the key stakeholders themselves.  Saying that, the heterogeneity between children who use AAC makes it incredibly difficult to represent the views of children themselves in research without adding tokenistic contributions.  So what do we do then? My initial thoughts; start small and be clear about who communicated specific opinions.  Some views might be generalised, others may not be.

In beginning to explore research with children and young people, I’m quickly establishing that there is a great deal already out there which describes children as active participants.

Much of what I’ve read describes this far more eloquently than anything I could compile and critique here.  For this reason, I’m directing the remainder of this post towards Prof. Priscilla Alderson’s blog post, entitled: “The missing third that skews sociology”. Here is the link to this post.  I hope you enjoy it as much as I did!

Levelling the playing field

image of Dave Grohl on drums & Stevie Wonder on piano

It would be fairly naïve to assume that I could easily master a new language, with a totally different linguistic system, at the ripe old age of thirty something without lots of trial and masses of error. If I was limited further by being exposed to my new language only once a day, with selected people and practicing only how to talk about the weather I’d probably decide it wasn’t worth the hassle.

Children who have motor difficulties that impact on their speech development are often limited in their opportunities to play and interact in different ways of their choosing. This has widely been discussed in previous research (see Bedrosian, 1997; Blockberger & Sutton, 2003). They are also likely to be introduced to other ways of talking much later than if they were to have developed natural speech, constantly playing ‘catch up’, with language systems that are challenging to learn.   Light and Lindsey demonstrated this, back in 1991, when exploring the mismatch between young children’s developmental levels and AAC technologies that were available at the time. Those endless opportunities for children to graze their knees (in a metaphorical and literal sense) were just not there then, and still not present today.

We know that some children understand, develop and learn differently and this isn’t always in a step-wise, developmental way. Language disorder implies a varied pattern of strengths that doesn’t correspond to developmental norms. This means that all children will not necessarily learn the same pattern at a delayed rate. Similarly, as a neurotypical adult, I am unable to empathise with the sensory and emotive occurrences that some children experience. This means, I am constantly missing opportunities to support children to frame and share these experiences with others.

 

What’s the goal?

We can’t expect that all children will play the piano, if they prefer the drums

If we’re going to begin to give a child a fighting chance of learning to use their AAC technology, perhaps we ought to start digging deeper. What does the child actually want to use it for? What are they currently expressing? Is this very different to what they have currently have available to them?

Often, as language specialists it’s no surprise that we choose to focus on training children to use their AAC to ‘transmit language’ (like telling a joke, answering dad’s question or expressing a dislike of broccoli). This might be completely acceptable and appropriate for them, just as long as their goal is not different to ours. But what happens if the goal for that child is to use their device to enhance their social image or self esteem? Interestingly, Light, Page, Curran & Pitkin (2007) showed that children who were involved in their study of designing devices for other children who used AAC said their friends would prefer devices that had varied functions, not just confined to verbal language.

In reflecting on my clinical work, I can’t help but ask why then am I bound by language development if I know that children follow different trajectories? Should I continue gradually working through the continuum of introducing real objects, before photos, symbols and written words? What happens if we happen to stick with symbols for extended periods? Are we hindering opportunities for supporting literacy development or other forms of expressive communication?

Lots of questions but food for thought, I guess.

 

 

 

References:

Bedrosian, J. (1997). Language acquisition in young AAC system users: Issues and directions for future research. Augmentative and Alternative Communication, 13, 179-185.

Blockberger, S., & Sutton, A. (2003). Toward linguistic competence: Language experience and knowledge of children with extremely limited speech. In J. Light, D. Beukelman, & J. Reichle (Eds.), Communicative competence for people who use AAC: From research to effective practice (pp. 63–106). Baltimore, MD: Brookes

Light, J., & Lindsay, P. (1991). Cognitive science and augmentative and alternative communication. Augmentative and Alternative Communication, Vol. 7, pp. 186-203

Light, J., Page, R., Curran, J., & Pitkin, L. (2007). Children’s ideas for the design of AAC assistive technologies for young children with complex communication needs. Augmentative and Alternative Communication, 23, 1-14.

 

 

 

Disclaimer: The author of this blog post has no particular preference for pianos or drums and does not assume that either is more appealing than the other.

The story so far

old library books

Encouraging children to take on any form of technology can be tricky for so many reasons.  A quick search for computers for kids brings up hundreds, thousands of choices which compete for our attention.  Each has a seemingly impressive list of specs and multiple capabilities, from an adult perspective.  Usually, we manage to decide on one (whether it be for gaming, learning, communication or all) but the excitement of tearing away the polythene wrapping and dislodging it from its polystyrene cocoon quickly turns into a reality that now, you’re on your own and it’s up to the child to use it or not.

If it’s engaging you’re onto a winner.  The device begins to mesh into everyday life, across home, school, grandma’s house and other and the excitement snowballs until everyone that needs to, can recognise its value. If it’s boring and too difficult to learn to use then it is destined for the cupboard; occasionally to be brought out to humour the well-intentioned speech therapist who is recognised to be working with what they have.

Within the field of technology design, participatory methods are increasingly being called upon to embed the values, needs and preferences of users at early stages of the design process, moving towards technologies that are closer aligned to what users want from their systems.  It’s great to see more and more design research involving children with neurodiversity.  Some key studies that have developed methods and frameworks for engaging children who have diverse needs can be found here, here and here. Whilst utilising therapeutic strategies and prompting us to consider total environmental factors, there is still a need to look at use cases, particularly for what is potentially the ‘hardest to reach’ who have severe speech and physical difficulties as well as additional needs.

Well-established augmentative and alternative communication (AAC) frameworks have provided both the foundations and pillars to my clinical work over the years (see Janice Light’s definitions of communicative competence) but it is only now that I’m starting to question where the child and their choices fit into this.  By choices, I mean authentic views and engagement that goes beyond the limitations that we, with adult eyes, impose on children.

Perhaps not all children want to use words and language to express themselves? Perhaps the learning and communication environments we provide are only pushing our adult agendas? Perhaps we need to stop and reflect on what children are telling us when they let out an audible sigh as we once again dust off their communication aids that lurk in cupboards?