A formative research project aimed at supporting families of children with sensory processing needs.
22 weeks (ongoing)
4.7 million kids deal with sensory processing needs.
Sensory processing is the brain's way of organizing and interpreting information received from the senses, such as touch as touch, taste, smell, sight, sound, and balance. Sensory processing needs arise when the brain processing this information differently, creating difficulties interacting with the world. Sensory needs is often described as body bombardment - eliciting an overwhelming response to every day stimuli.
In order to thrive, children with sensory needs require early intervention on their behalf. Yet parents encounter numerous tangible and intangible barriers that impede their ability to care for their children. Our team's interest in accessibility and prior background in science and special education made this topic a passionate one.
We strive to support parents, enabling them to provide the utmost care for their child's sensory needs.
We began our research with the following questions:
What types of resources currently exist for families managing sensory processing needs?
What are the outcomes of using these resources for children and families?
What potential barriers exist for addressing needs?
In what ways can we support families managing these needs?
A literature review to ensure a solid understanding of the topic and identify what work has previously been done in the space.
A competitive analysis to identify what services and products are currently being offered to this community. Each item was analyzed based on 4 criteria we felt were reflective of considerations made by families when seeking resources:
affordability - is this cost prohibitive for average income families?
adaptability - can this be used by a variety of children with sensory needs?
usability - is this easy to access and use?
enjoyment - how enjoyable is this for children and/or parents?
These activities informed us that a wide variety of resources exist to support the needs of children and established some of the barriers to accessing them. Most interestingly, we found a lack of offerings that directly supported parents.
Taking what we learned from secondary research, we set out understand sensory processing needs form a variety of perspectives.
We recruited 5 professionals in a variety of relevant fields to identify techniques being used to address sensory needs, gather thoughts about translation of care into the home, and gain professional perspective on the role of technology in intervention.
Most importantly, we recruited 5 parents with children ages 3-18 to learn about the experience and impact of sensory needs. We inquired about the types of interventions sought for their child, how they manage needs, and the role technology plays in their daily lives. We also interacted directly with two individuals with sensory needs.
Interviews were flexible to accommodate our participants - some interactions were held remotely, others occurred in person. These conversations helped our team to:
Establish what resources are currently being used to effectively address sensory processing needs
Understand the challenges and barriers to dealing with this condition
Exposed the valuable role of community for these families
During the course of our interviews, we asked participants to show us items they use when dealing with sensory processing needs. Seeing these items allowed the team to:
Identify how people create and adapt tools and techniques to suit their needs
Envision the experiences of these families and their environments
In the midst of the interview we also asked participants to tell a story about a difficult time dealing with an episode of sensory needs. It allowed us to:
Understand the details of managing needs and the impact it has on the family
Expose the emotional experiences of parents
This method became critical to the outcome of the study, as it uncovered the underlying struggles parents were facing. This led us to modifying the research plan to further explore these emotional underpinnings.
After data was collected, I led the process of affinity diagraming to establish common knowledge across the team and identify emergent themes, which I used to generate insights.
Additionally, I created a journey map to help our team better understand the touchpoints and emotional trajectory of the parental experience.
1. Parents experience a sense of loss at identification that hinders acceptance and responsiveness.
Parents go through a grieving process when they have the realization that life will be completely different and they can no longer engage in their typical activities. Parents must radically alter their lives in order to help their children reach developmental milestones and reduce symptoms over the lifespan. Despite their best intentions, emotional hurdles hinder parental efforts.
It took me from the first I heard it at 2 until he was 5 years old and had a formal diagnosis. I never would have thought it would be a diagnosis. - May, mother and child psychologist
2. Emotional hurdles are exacerbated by isolation from a support network that helps buffer societal misconceptions.
In addition to the emotional challenged faced at identification, parents also cary the burden of feeling of isolation, as members outside of this community often don't understand. Without a network of parents who share similar experiences, the loss of "normalcy" keeps parents from seeing long term positive outcomes for their families.
We couldn't take them anywhere. There was nowhere that you opulent get looked at, or talked about, pointed at, or made of. - Monika, mother of 2 children with sensory needs
3. Parents lack support in navigating the massive amount of information to identify necessary interventions
Parents sift through a lot of information when looking for relevant resources to address their child's needs. Often this requires enormous amounts of time and effort to sort through seemingly irrelevant information.
Parents feel like "I need you because I'm not the expert." - Tina, Occupational Therapist
4. Parents struggle to identify a support network until one entry exposes a wealth of community and resources
Making connections with other individuals in this community is challenging, but once they find the right person, they're in. Often these connections are made in person through a mutual connection.
It's all about getting in on the network. Once we got connected to our OT, that got us connected to other people and really opened up our resources. - Amile, mother of a child with sensory needs
5. Advice from experienced parents is valued above professional recommendations.
Parental advice is often more valuable because it stems from contextual, real world experience. This passage of information between parents is one of the most important resources in dealing with sensory processing needs because it reduces the time to find solutions that work.
We get more from each other because everything is trial and error. You get a lot of 'did you try this' or 'this worked for me'. We get more out of that than from our therapist. - Monika, mother of 2 children with sensory needs
6. Internal and external factors around sensory needs are constantly evolving, requiring parents to continuously seek new and creative solutions.
Interventions for sensory processing have limited length of efficacy. Either the child outgrows the method or simply find it no longer meets their needs. In order to keep up with these constant changes, parents create their own techniques which requires a lengthy trial and error process.
I thought I had found something that would work well for this little girl - it was a toy my son had. For about 20 days she loved it, then she hated it. - Tina, Occupational Therapist