Caregivers’ Perspectives on the Sensory Environment and Participation in Daily Activities of Children With Autism Spectrum Disorder

Design

A phenomenological approach was used for this qualitative study to understand the lived experiences of the parents and caregivers of young children with ASD. A key component of this approach is to understand phenomenon from the perspective of the people involved. Parental and caregiver experiences were viewed as central because caregivers typically engage in shared participation with the child and provide the supports that facilitate participation, giving them unique insight into the influences of sensory environments. Semistructured interviews were the primary source of data to ensure that results represented the viewpoints and experiences of caregivers.

Participants

Researchers recruited parents and caregivers between ages 20 and 59 yr who had children ages 3–7 yr with symptoms or a diagnosis of ASD (autistic disorder, pervasive development disorder—not otherwise specified, and Asperger syndrome) based on Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM–IV; American Psychiatric Association, 1994) criteria. The children of participants were all previously diagnosed with DSM–IV criteria rather than the more recently revised Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013) criteria for ASD. All participants were either biological or adoptive parents or identified as full-time caregivers for the child. For inclusion in the study, caregivers had to have legal custody of the child. Confirmation of diagnosis and symptoms were obtained through school and medical reports.

In this qualitative study, the focus was to characterize the diverse experiences of parents and caregivers of children whose behaviors were indicative of autism. In such a study, generalization of specific findings is not the primary concern; therefore, researchers did not undertake further validation of the child’s diagnosis.

For inclusion in the study, participants needed to be able to complete a recorded individual interview over the phone, in their home, or in a local community setting. A purposeful maximum-variation sampling strategy was used to obtain variance within the level of functioning typical across the ASD spectrum in the participant pool. Using this sampling strategy, researchers aim to select participants who represent a wide range of ASD symptoms and levels of support. Sampling was primarily accomplished through a review of demographic data collected before inclusion in the study. Participants were recruited through support groups and agencies that provide services to children with ASD. Information on the study was also posted on social media groups targeting families with children with ASD. Contact information was provided, and interested participants initiated contact with the researchers. Additionally, the primary investigators and consultants for the project had access to participants through ongoing or previous research and clinical relationships.

There were 34 participants in the study. All participants were English speaking and lived in Canada or the United States. There were 33 female participants and 1 male participant, with ages ranging from 20 to 59 yr. There were 15 participants who identified family caregiving as their primary role, 11 participants who worked full time, 7 participants who worked part time, and 1 participant who attended school full time. Annual family income varied, with most participants (n = 29) falling into middle to upper socioeconomic ranges (≥$50,000), with only 5 participants falling below this level (<$50,000). Twenty-three participants completed some graduate school or had a graduate degree, and 9 participants completed some college or technical school. Two participants completed high school or part of high school. The mean age of the participants’ children was 4.5 yr (standard deviation = 1.42). All the children were diagnosed with ASD. Of the participants’ children, 6 were female, and 28 were male. Ten children were in regular education, 11 were in special education, and 3 were in a combination of both regular and special education. Seven children did not attend school, and school placement was not reported for 3 children.

Data Collection Procedures

When potential participants contacted the researchers, they were asked a series of questions to confirm inclusion in the study, including their children’s ages and diagnosis or presenting symptoms. If the participants met the inclusion criteria, informed consent and permission to digitally record were obtained either in person or through secure electronic documents. Data were collected for the study through semistructured interviews, member checks, and demographic information. Participants completed interviews lasting between 45 and 90 min that were digitally recorded. Interviews were scheduled either over the phone or in person, depending on the preferred interview method of the participant. Two researchers trained in qualitative interview methods conducted the interviews.

Guiding questions developed by the researchers and refined through an iterative process were used during the interviews to obtain data related to the targeted research questions (Table 1). Specifically, questions were framed to elicit the perceived experiences and observations of the participants regarding how their children responded to sensory stimuli in the environment and how their reactions affected participation. Interviews were not limited to these guiding questions, but questions were expanded as needed to obtain the full perspectives and experiences of participants. Interviewers used steering probes when needed to guide participants’ conversations back to the research process and depth probes to facilitate the expansion of descriptions of the experience.

Member checking was conducted with 5 randomly chosen participants to ensure trustworthiness of the data. The researchers met with these participants either in person or over the phone to share the interpretation of the data and determine its accuracy from the perspective of the participant. The participants were provided with a summary of the emerging themes for review before the scheduled interview. This follow-up interview allowed participants to discuss initial findings and to provide additional information or feedback. The interviews were recorded to review and integrate any new data provided as part of the analysis process.

Additionally, all participants completed a demographic form that was either mailed to them or available through an online link with Qualtrics Survey software (Qualtrics, Provo, UT). Demographic data collected for participants included age, gender, employment status, education, annual income, ethnicity, living environment, country, and state, as well as relationship to the child. Demographic data collected for children of the participants included age, gender, ethnicity, diagnosis, and classroom placement, if applicable.

Data Analysis

Research assistants transcribed all interviews, which were then cross-checked with the digital recording to ensure accuracy. Data analysis was initiated as soon as an interview was completed and transcribed. Two or more researchers analyzed each interview to enhance validity of the results. The researchers were different from those who conducted the qualitative interviews and member checks to better bracket contextual biases. All researchers who completed the analysis process were trained in qualitative methodology.

A relational content analysis process was used to analyze data. The creation of a codebook or use of descriptive labels guided data analysis. The primary researcher and a research assistant developed a codebook through exploration of the first three interviews. The coders independently read the transcripts and made brief notes (memos) related to research questions for the study. After the completion of these reviews, the coders met to discuss their perceptions and developed a codebook, including a coding scheme for each of the guiding questions. To ensure accuracy of the codebook and consistency of the coding process, these same coders independently coded three more transcripts using the codebook as a guide. The coders met to compare and discuss the results of coding efforts, and minor revisions were made to the codebook. All researchers involved in data analysis met two other times during the open coding process to discuss the coding and to revise the codebook. There was only one minor revision implemented in the codebook after the first of the two meetings.

After open coding was completed for all interviews, researchers met to discuss the results and to determine agreement in the coding. In the few instances in which there was not agreement, the rationale for applying data to a code was discussed until consensus was obtained. After the completion of open coding, three researchers reviewed the analyzed data to identify broader categories and the links among categories in relationship to the research questions. Each researcher reviewed the completed codebook—which included words, text, and quotes categorized under descriptive labels—and completed memos of broader categories and links. This step was first completed independently, followed by a group discussion resulting in consensus. These broader categories represented the overall experiences across participants in the study and resulted in four major themes. NVivo qualitative data analysis software (Version 9; QSR International, Burlington, MA) was used throughout the analysis process for data organization.

There were no new codes or general themes identified after the analysis of Interview 14, indicating data saturation. Researchers continued to collect and analyze data to obtain rich descriptions of participants’ experiences and for a different but related larger study. At least two different researchers analyzed each interview to obtain investigator triangulation. Each researcher used the same methodology to analyze data, and findings were compared to understand multiple perspectives. All researchers arrived at similar conclusions, enhancing validity of the results. IBM SPSS Statistics software (Version 20; IBM Corp., Armonk, NY) was used to complete a descriptive analysis of demographic data.

Sensory Responses to the Environment

Participants described two main types of responses of their children to environmental stimuli: (1) sensory seeking and (2) sensory hypersensitivity. These responses were perceived as affecting participation. As defined and described by the participants, sensory seeking included behaviors that demonstrated a craving for additional sensory stimuli above and beyond what would be typical in the current environment, such as excessive running, crashing into objects or people, and self-stimulatory movements. Sensory hypersensitivity was described as an overly sensitive or reactive response to stimuli in the environment. Descriptions of behaviors indicative of sensory hypersensitivity included holding his or her ears when there were loud noises, refusing to participate in certain grooming tasks because of the way they made him or her feel, and not wanting to be touched by another child during play interactions.

One of the concepts that emerged during the data analysis process was that it was the combination of the child’s responses to stimuli in the environment and the sensory features in the environment that affected participation. For example, Participant 5 reported that “he’s hyper anyway, but with the extra stimuli . . . he just completely shuts down” when she described the impact of the sensory environment on her child’s participation. Another (Participant 12) identified that her child’s auditory hypersensitivity results in being “set off by loud, unexpected noises [in the environment], such as a fire truck, ambulance, fireworks, and garbage truck,” resulting in a tantrum and cessation of the daily activity. Participant 23 reported that he could only take his child shopping in “certain stores because of the lights” because the child had hypersensitive responses to bright visual stimuli.

Impact of Sensory Responses on Participation

The degree to which the sensory factors affected participation in daily activities varied, but the experience was reported by all the participants interviewed. There were numerous activities for which participants could clearly identify that the sensory features in the environment or activity were the main factor affecting participation in an activity. There were other activities in which participants reported that a combination of factors—which often included the sensory features of the environment or activity but also included core and secondary features of ASD, such as social, language, motor, or cognitive skills—influenced participation in a daily activity. For example, Participant 29 reported that mealtime was not only affected by the limited types of foods that her child would eat because of sensory factors but also by the child’s communication and social challenges that decreased engagement necessary to participate in mealtime interactions. Participant 7 identified that unusual fears affected her child’s participation during toileting because he was afraid to sit on the seat, whereas Participant 13 identified “fixation with lining up toys” as a factor affecting play with other children.

Participants' Decision-Making Process

Participants described a decision-making process related to the amount of effort necessary to support participation and whether participation in a given activity was perceived as essential and meaningful or nonessential and nonmeaningful (Figure 1). Those activities that were deemed nonessential or lacked meaning were avoided if there was not a fit between the child’s sensory responses and the sensory environment. These decisions varied on the basis of the individual perception of the participants. Many of the participants identified daily activities involving self-care as essential, but the perceived meaningfulness of other daily activities varied. For example, activities such as tooth brushing, dressing, hair care, bathing, and toileting were identified as essential, and participants almost always expended effort to support participation. Participant 6 reported that 3–4 people were needed to help hold her child still to wash his hair. Participant 17 reported,

OPEN IN VIEWER

Figure 1.

Caregiver decision-making process for enablement of essential or meaningful daily activities.

For other daily activities, the importance varied on the basis of the perceptions of the participant. For example, Participant 30 reported that she dreaded getting party invitations for her son and stated, “When I see the invitation coming, we’ve got to think of an excuse why we can’t go. I don’t know if he becomes overwhelmed with everything that’s going on, he no longer hears us and that happens a lot.” In contrast, Participant 4 identified that even though it is extremely effortful and at times not a successful experience, she continues to take her child to birthday parties because she does not want him to “miss out and this is an important part of his social development.” Participant 1 reported that she keeps attempting to have play dates because she “wants him to have friends,” although this activity is often challenging. Other participants reported feeling that their child was “missing out” but that it was too “hard” or “effortful” to participate in certain nonessential activities.

The activities perceived as essential and meaningful were pursued but often required additional strategies and supports implemented to enable participation. This concept of enablement emerged frequently throughout the interviews. When a child did not need any additional supports or strategies, participation was described as successful and requiring less effort. When supports and strategies were needed, participants reported that the activity required a great deal more effort for participation on both the family and the child’s part. Overall, participants described a decision-making process regarding which daily activities to enable on the basis of the meaningfulness or essential nature of the activity and the amount of effort and strategies needed to support participation (see Figure 1).

Strategies to Enable Participation

In the final theme, strategies to enable participation, six consistent strategies were identified as supporting children’s participation in daily activity. These strategies enabled participation and reduced the effort required to support the child’s participation through an improved fit between the sensory environment and child characteristics. Some of the strategies directly related to the sensory factors of the activity or environment. Other strategies focused on reducing behavioral responses associated with the sensory factors through preparation, routine, and increasing the child’s perception of control. Participants reported that their child would demonstrate less intense and problematic behaviors when the daily activity was embedded into a routine or when the child was prepared for the sensory experience. Additionally, participants reported that when their child had control of the situation or was provided with choices to enhance the perception of control, the effects of sensory factors in the environment were reduced when compared with participation in those same activities without perceived control or choice. A description of each of the strategies is provided below:

Participants identified that some of the strategies were implemented with little effort and at times minimal awareness, whereas at other times they were perceived as effortful but necessary. The concept of effort permeated the interviews and reflected the dynamic interaction between the participant and the child’s participation. The effort required was that of the participants in enabling or supporting participation for their young child with ASD. Participants identified that participation occurs most extensively within the context of the family for a young child. In this shared participation, participants responded to the child’s participation limitations and used the various strategies to enable participation for their child.