Strategies for Effective Communication with Neurodiverse Children and their Guardians
Author: Jackson McFadden
For this week’s Inclusion in Neuroscience topic, our lab discussed how we as researchers can better communicate with participants and their families. Though there is a set standard of professionalism in neuroscience research, it is easy to overlook the most important aspect of conducting research: the participant!
Communication styles such as tone, word choice, body language, and expressions may seem like second nature, but throughout our discussion, we realized how important it was to remind ourselves of the messages we would like to put out. For instance, when greeting a participant, it might be relevant to consider the following questions:
We were also presented with another important question to consider: how can we best help to create a positive relationship between researcher and guardian? Naturally, it is important that our direct participant feels comfortable and confident. Especially when testing minors or participants accompanied by guardians, it is imperative that everyone present feels their best.
It is noted in literature that oftentimes parents or guardians may feel as if researchers do not take their expertise of their child seriously, which can create an uncomfortable environment. As we discussed in lab, it is important that we engage and incorporate the guardian’s reflection of their child’s behavior into the environment that we create during an experiment. It may be hard for a researcher to read cues of discomfort, stress, or other difficulty that a guardian may be familiar with. By working together with the participants, their guardians, and our fellow researchers, we can create the best possible testing conditions.
These few considerations are key in building strong, lasting relationships with those who participate in research. As one might imagine, these relationships can also serve to create better conditions for collecting data, which is always a plus!
Author: Mariana Orihuela
This week's Inclusion in Neuroscience topic was focused on learning to support historically excluded and marginalized research participants. To implement effective techniques that will help improve the B-RAD Lab’s work with these populations, the lab read an article about cultural and linguistic adaptations for families of people with disabilities (Sands et al., 2021) and watched a video on research distrust in historically marginalized groups due to previous violations of informed consent. While discussing these resources during our weekly lab meeting, the main themes that emerged were inclusion, language, and trust in research. Lab members mentioned how social media could be used to promote inclusion in research settings. They discussed how displaying participants’ reviews of research labs may increase transparency and verify the trustworthiness of a lab for future participants. Also, maintaining updated websites that clearly describe studies could provide potential participants an opportunity to investigate research labs before contacting a research lab to indicate their interest in study participation. To ensure that people from marginalized groups understand informed consent, cultural and language factors must be considered when recruiting participants from these populations and explaining informed consent; this is another way of establishing and maintaining trust in research. Before ending our discussion, the B-RAD lab agreed that to promote inclusion, they will be careful with their word choices, learn American Sign Language, prioritize reading and citing articles from diverse research teams, be transparent and clear about informed consent, and be considerate of their language tones.
Author: Danielle Raynor
For our weekly Inclusion in Neuroscience discussion, our lab members read the article “Do Different Kinds of Minds Need Different Kinds of Services? Qualitative Results from a Mixed-Method Survey of Service Preferences in Autistic Adults and Parents” written by Ariel M Cascio and Eric Racine. From this article, we learned that there are more inclusive and considerate ways to provide accommodations for the autistic community, such as advocating for services with multiple divisions that support each person’s specific needs. Additionally, we watched a video titled “Autism Service Dog Feature: Olivia's Story” that discussed a child's journey and how her service dog has helped her. This video describing Olivia’s story demonstrated that creating individualized services to accommodate an individual's needs can make a positive impact in their life.
In the lab’s group discussion, we emphasized that we should not generalize service preferences in participants, especially in autistic individuals. While some participants prefer “autism-specific services”, most participants in the study reported a preference for different services that cater to their own needs. As researchers, we cannot overgeneralize service preferences because autism is heterogeneous, and there is a wide spectrum of preferences. Neurodiverse individuals are vastly different, which is why our lab believes in understanding each person as an independent, unique individual and listening to their preferences and experiences. We also discussed how having services available in different environments is one of the most important aspects of service delivery, but this is currently an issue for many families. Availability of services for parents and their child varies based on geographic location and transportation. For example, the number of service options in many geographic locations do not match the density of autistic individuals in that same area needing services, which can lead to funding issues. Keeping possible roadblocks like this in mind, our lab has learned that we need to consider where the participants we work with are located and create plans for addressing these barriers. Lastly, we learned that although it is essential to consider and respect the needs of parents, we cannot gain true insight into the needs of autistic individuals just from parents' perspectives. It is crucial to also listen to autistic individuals. We want to support the autistic community by respecting their preferences and needs through individually focused services. We believe this is important in research and for working towards an inclusive society.
Authors: Maggie Johnson & Jackson McFadden
For our Inclusion in Neuroscience topic of the week, our lab watched part of a webinar (How We Talk About Adolescence Matters) hosted by the Society for Research on Adolescence, and we reviewed handouts created by the UCLA Center for the Developing Adolescent. We learned that little changes in the ways we speak about adolescence can make a big difference. Adolescents tend to be viewed by society as unstable and impulsive because of the extreme biological and cognitive changes that occur during this developmental period – but this isn’t necessarily the case. Slightly tweaking the way we describe adolescents and their experiences can lead them to have a better self-image and more positive relationships. For example, are their developing minds a gateway into poor decisions or an opportunity to learn more information? The UCLA Center for the Developing Adolescent argues the latter.
Another example of this can be seen within the context of prevention psychology and the labeling of adolescents as “at risk.” Naturally, this phrase is used to describe individuals who, through a collection of criteria, exhibit higher risk for negative personal and health outcomes. Though the term describes to researchers and laypeople alike what circumstances these individuals may find themselves in, there is debate as to whether the terms “at-promise” or “at-potential” should substitute the term “at-risk.” It is argued that the label “at-risk” sets negative expectations and increases stigma while other terms emphasize an adolescent's strengths and potential.
In research settings specifically, emphasizing the positive aspects of adolescent brain development can greatly improve the nature of a study and increase the likelihood that the outcomes will benefit the lives of adolescents. Due to the current societal outlook on adolescents, some adults view adolescents as less reliable sources of information, because they are seen as simply an “in-between” stage of life. Of course, this is not true and can cause adolescents to feel overlooked. This problem is reflected in school as well, such as when teachers dismiss some of the feelings of adolescents as unimportant and simply a “stage.” This leads to bonds not being formed between adults and adolescents and limits the emotional connections they can create with others.
It is important to constantly evaluate how we as researchers refer to the individuals whom we seek to help. Little phrases or descriptors that may be used reflexively have the potential to reinforce negative perceptions of the groups that they are describing. By talking about adolescents (in a positive light), listening to what they say, and understanding how they would like to be viewed, we can advocate for their proper image in society and in research.
Welcome from B-RAD @ USC!
Author: Dr. Caitlin Hudac
Director of the Brain Research Across Development Lab
(A belated) first post from the University of South Carolina!
In August 2022, we relocated our lab to USC from the University of Alabama. It's been quite a transition and we are excited to be "back in business" so to speak. Over the next few weeks, you will start to hear from our new batch of amazing undergraduate interns as they recount our weekly lab conversations targeting Inclusion in Neuroscience. (#NeuroInclusion). Check out our new team roster below!
I also hope to add some retrospective blogposts to describe the amazing journey we have taken to get here. I will be highlighting parts of our BioGENE study research "roadtrip" that have really cemented our objective to be inclusive of our families. Our new equipment arrived in early January 2023, and we are working on getting our central lab space operational in Columbia, SC so that we can extend our research to rural families as well as families across the globe!
Our goals for Spring 2023 are to restart our research projects! This will include the BBAD Study, which will be open to neurotypical and neurodiverse participants of all ages. We are in the last year of the Social Attention Study which will include data collection in both Columbia SC and Tuscaloosa AL. The BioGENE study will resume in the summer or ASAP. Check out the new research pages to send us your contact information -- we will stay in touch as we finish installing equipment and getting research approvals.
Lastly, we are dabbling with social media as a way to stay more connected with families. Do you have a question you'd like us to address? Maybe it's a research question, maybe it's a "How does the brain..." type question. We want to hear from you! Comment below and follow us (newly) on Twitter @ B_RADLAB!
Looking forward to all that is to come in 2023! cheers,
B-RAD Lab Members all contribute articles