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Driving Change: How Home Visits Can Shape the Future of Autism (and other) Research

Hoca

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In the evolving landscape of autism research, a shift towards more inclusive and accessible methodologies may be gaining momentum, as exemplified by the efforts of developmental psychologists like Caitlin Hudac. Traditionally confined to laboratory settings, Hudac ventured into the community, bringing her studies directly to the homes of participants.

Hudac’s initiative, driven by the challenges posed by the COVID-19 pandemic and the geographical isolation of her lab, involved a remarkable journey across 33 states to collect EEG data from participants in their own homes. This endeavor was not only a testament to her dedication but also highlighted the logistical complexities and resourcefulness required to conduct such research outside traditional settings. The strategy of home visits allowed Hudac to engage with families in their own spaces, making the research process more comfortable and accessible for participants, especially those with complex needs or who lived far from major research centers. This approach has shown promising results, with projects like Hudac’s seeing increased participation from diverse demographic groups, thereby enriching the data and potentially leading to more generalized findings about autism. In addition, it not only addresses the logistical barriers faced by marginalized communities but also reflects a broader commitment to diversifying research samples. By adapting their research protocols for home environments, scientists are able to gather data from a wider spectrum of the population, including those who have been historically underrepresented in autism research.

The sped up, ten second video below shows Hudac packing up all of her equipment in two large suitcases. This video has no audio.


However, conducting research in home settings is not without its challenges. Researchers must contend with unpredictable variables such as background noise and the need for flexibility in data collection methods. Despite these obstacles, the benefits of reaching a more representative sample of the autism community are clear.

Note: The source article below has a lot more detail about Hudac’s home visits

Taking Research To Communities When Budget Is Limited​


For researchers operating with limited or no budget, emulating Hudac’s comprehensive approach may seem daunting. (She did have $110,000 in funding after all) Yet, by leveraging local partnerships, employing affordable and accessible technology, and tapping into volunteer networks, it is possible to conduct meaningful research in community settings. Virtual assessments, for instance, can offer a cost-effective alternative to in-person visits, broadening participant access without incurring significant travel expenses. Moreover, seeking out small grants, crowdfunding opportunities, and support from academic institutions or community organizations can provide the necessary resources to undertake this important work with limited financial means. This innovative approach to autism research not only enhances the inclusivity and relevance of the findings but also paves the way for a more equitable and comprehensive understanding of the autism spectrum.

Implementing cost-effective strategies to conduct research in communities with limited resources has been a challenge researchers have navigated in various ways. One notable example is the use of mobile technology and apps in collecting data for health and psychological research. Studies such as the one conducted by Torous et al. (2017) in “The New Digital Divide For Digital BioMarkers” highlight the potential of mobile health (mHealth) technologies to bridge the gap in research participation across diverse populations. By utilizing smartphones and apps, researchers can collect real-time data from participants without the need for expensive equipment or travel, making it a viable option for those with budget constraints.

Community-based participatory research (CBPR) is another approach that has been effectively used in research with limited budgets. An example of this can be seen in the work by Wallerstein and Duran (2010) in “Community-Based Participatory Research Contributions to Intervention Research: The Intersection of Science and Practice to Improve Health Equity.” CBPR involves partnering with community organizations and members to conduct research, which not only helps in addressing the community’s needs but also leverages local resources and knowledge, reducing the overall cost of research.

Crowdfunding platforms like Experiment.com also provide avenues for researchers to raise funds for their projects. This method has been successfully used by scientists to finance small-scale research projects that might not qualify for traditional funding sources. An example includes studies in environmental science where researchers have raised funds for conservation projects or to test water quality in specific communities.

These examples demonstrate practical ways in which researchers have overcome budget constraints to conduct meaningful research. By leveraging technology, engaging with communities, and exploring alternative funding sources, researchers can continue to advance knowledge and inclusivity in their fields even with limited financial resources.

Source: The Transmitter

ChatGPT, a potential tool for increased accessibility, was used as a research and writing aid for this blog post. Do you think this is an appropriate use of chatGPT? Why or why not? Let me know!

The post Driving Change: How Home Visits Can Shape the Future of Autism (and other) Research appeared first on Assistive Technology Blog.
 
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