Supporting Participation for Children With Sensory Processing Needs and Their Families: Community-Based Action Research

Brief Survey.

A five-question written parent survey, administered after the consent form was signed, was intended to acquire factual descriptive data, such as the child’s school placement and contact information. However, only 3 parents of the first cohort of 17 parents were able to finish the survey onsite because of their child’s behaviors. Because encouraging these parents to complete the form onsite would clearly interfere with the quality of their museum visit, all remaining study participants were subsequently asked survey questions verbally during phone interviews.

Interviews.

All recruited participants were contacted for a semistructured, 30-min, in-depth phone interview about their museum experience within 2 wk of their museum visit. Questions were either open-ended, such as asking parents to describe their main reasons for attending, or had follow-up, open-ended probes. Of the 74 potential participants, 46 parents completed the phone interviews. Those who did not participate failed to respond to three contact attempts or did not qualify for the study. Interviews were conducted by pairs of faculty and graduate student researchers trained in research methods, with one member of each team conducting the interview and the other transcribing and contributing to member checks. Interview questions were created to best capture the rich narratives of the families and to minimize researcher bias. Construct validity of the survey and interview instruments used was enhanced by information gleaned from a careful review by content experts and an examination of archival data from other similar programs. Additionally, instrument questions were discussed with museum staff and adjusted to best meet their needs, aligning with an action framework lens.

Other Data Sources.

Stringer (2014) suggested that rigor in qualitative research can be enhanced through data triangulation (multiple sources) as well as peer and member checking to clarify meanings or misperceptions. To enhance this study’s rigor, interview and survey data were augmented with field notes and reflective memos—which served to capture voice intonation, pauses, and other nonlinguistic information during phone interviews and acknowledged potential researcher bias about parenting, disability, or related topics that could affect data collection or analysis.

Success of Visit.

Parents made multiple statements indicating the positive, successful feelings that they and their children had at the events along with their gratitude for the opportunity to attend and have a good day as a family. One mother commented, “We appreciated that the accommodations were there to make her first introduction to a museum a good one,” and another mother said, “We don’t have a lot of perfect days, but this definitely made it up there.” Another parent shared the following comment:

An additional mother summed it up by saying, “I can’t overstate [what] a good resource this is for parents with kids with disabilities. You want them to experience the world and have the same experiences as typical child[ren]. It’s hard to enjoy yourself. But here I did!”

Twelve parent participants said that they wished that other institutions or settings had similar events or sensory-friendly modifications in place. As one parent stated,

Among the 32 families for whom this was not a first museum visit, many parents (11) expressed that their child was able to stay longer than when they visit during regular museum hours. One parent stated, “We were there 4 1/2 hours; I didn’t even think we would stay there that long. He loved it. We came home and all said that it was just such an enjoyable day!” Another parent commented, “We stayed for 2 hours. We never stay anywhere more than 45 minutes. It was a shock when you looked at your watch!” Researchers’ field notes uniformly described a sense of surprise and pleased pride among parents in their child’s ability to sustain the visit. A longer visit was associated with an improved visit quality; parents said that they often leave early from community settings.

An Increased Sense of Personal Well-Being.

Although it was not directly asked, 26 out of 46 parents spontaneously described an increased sense of personal well-being resulting from their experience at SFS events. Positive terms and phrases used to indicate a greater sense of well-being included feeling “welcomed,” “understood,” “comfortable,” “at ease,” “safe,” and “able to let my guard down and relax.” Parents also used words and phrases indicating fewer negative emotions at the events: “less stressed,” “didn’t have to be embarrassed,” “less bothered,” “less overwhelmed,” “less pressured,” “less frustrated,” “less annoyed,” “less scared,” “didn’t have to worry,” and “less anxious.” In the Occupational Therapy Practice Framework: Domain and Process (3rd ed.; American Occupational Therapy Association, 2014) and the ICF, many of these terms are associated with psychosocial well-being and mental health. Research has indicated that parents with children with autism have higher rates of depression, anxiety, and isolation (Rizk, Pizur-Barnekow & Darragh, 2011); therefore, an increased sense of well-being is a key finding.

Awareness and Preparedness.

Data gathered suggested that a family’s awareness and preparedness for access helped set the tone for the visit, affecting the quality of the experience that followed. Families frequently spoke about using the website, social media, and advocacy organizations to learn about the SFS program. Twenty-two out of 46 families mentioned that they found information on the museum website before coming or took materials from the SFS tables in the atrium as they entered the museum to prepare for their visit.

Sample comments included, “We read the sensory stories ahead of time online to know how to use them and for him to know more about each exhibit,” and “The special activities near the entrance were great, it gave us a chance to get our bearings while the kids were occupied.” Another parent said, “The sensory map . . . let us know what to expect in each place and gave us the opportunity to warn our son if something might be loud, what it [would] sound like, and where the noise was coming from.” Families also mentioned easy parking and the ability to pack a special diet lunch as helpful in meeting their needs when preparing for a visit.

Financial Access.

Reduced cost was mentioned by 16 participants. As one parent pointed out, “The discount was so helpful . . . families with children with special needs usually have a lot of extra bills.” Enhanced financial access allowed the inclusion of more family members in the experience, as another parent explained, “The reduced cost was a big factor, usually when we do stuff like this it’s with just one parent because it’s so expensive . . . this was an opportunity for both of us to go with him, and be all together.”

The Value of Human Help.

Finally, 29 out of 46 parents described the value of human help as a pragmatic factor facilitating successful participation. Museum staff and occupational therapy students, all trained by occupational therapy faculty, were viewed as particularly helpful in the cool-down room as well as when orienting families as they entered, helping children engage with exhibits, and leading special activities.

For some families, the skilled volunteers enhanced the social environment for their child, as stated by a single father with a 21-yr-old daughter with a profound disability during her first museum visit: “The staff and [occupational therapy] students did a great job; my daughter loved interacting with them. She liked the people best over the exhibits!” For others, human help made the visit logistics more manageable: “Volunteers made it easier since I was trying to help my son through his fears and also make my daughter’s visit enjoyable.” Parents expressed the importance of being greeted and assisted by people who understood their needs, (e.g., “It was nice to be around people who get it [emphasis added].” “If my son had a meltdown, I wasn’t going to get ugly looks or [be] told I should parent differently.”). Parents also commented about how helpful it was that all the volunteers “understood” and were “on the same page,” creating “an environment with no judgment.”

Smaller Crowds.

Thirty-five of 46 families mentioned the diminished crowds as a critical sensory variable at the events. A majority of these parents linked inappropriate behaviors by their child to the presence of crowds in a community environment.

Sensory Modifications to Exhibits.

Twenty-seven out of 46 parents described their appreciation for features of exhibits that were altered to make the museum more comfortable for their child during SFS hours:

In general, parents said that their children benefited from the reduced auditory and visual input at the exhibits because it let them enjoy the interactive proprioceptive and vestibular components.

Cool-Down Room.

Half of the parents (23 of 46) said that the cool-down space was an important SFS feature. One parent said, “The cool-down room was the reason we were able to stay so long; it was amazing, it allowed us to reboot [and return to the exhibits after a difficult moment].” Other parents made comments such as, “He didn’t use it this time, but glad to know it’s there; he might use it next time,” indicating that by merely knowing it was available, their comfort level increased.