Finding Common Ground: Exploring Undergraduate Student Volunteering as a Support for Parents of Children With Autism

Participants

Parents were invited to participate by email through various parent support group listservs specific to autism that serve families living in North Carolina. Twenty-four mothers participated in the study. The racial composition of parent participants was 54% Hispanic, 4% African American, and 42% White non-Hispanic. Two parent focus groups were conducted in Spanish with Hispanic mothers using a bilingual translator. Hispanic participants were recruited through a local autism organization. As revealed through focus group discussions, most of the parents were either affiliated with an autism organization, volunteered in the autism community, and/or regularly attended informational meetings for autism. So, overall, they were knowledgeable about autism services and resources. Parents gave a brief description of their child’s autism, usually when they introduced themselves at the beginning of a focus group. These introductions indicated that there was an approximately even distribution of parents whose child had mild support needs and parents whose child had moderate to high support needs. Those with mild support needs were characterized as able to attend school with little or no assistance, hold meaningful conversations with others, or were otherwise described as “high functioning.” Children characterized as having moderate to high support needs were described as needing support services to function in school, were nonverbal, could not meaningfully communicate with others, or were otherwise described as “low functioning” or “severe.”

Undergraduate participants were recruited through student organizations and department listservs at a local public university. Eleven students participated, 10 were female and 1 was male. Nine students were either freshman or sophomores, and the remaining two were upperclassmen. The racial composition of the student participants was 27% African American and 73% White non-Hispanic.

The researchers did not have an existing relationship with the majority of the participants. However, the principal investigator was acquainted with 3 of the 11 student participants and 4 of the 24 parent participants from prior involvements in the autism community and student programs. Students were recruited from two undergraduate organizations specific to autism and from those studying psychology and speech pathology. The student organizations focused on fundraising and advocacy, as well as some service in the autism community, with combined listservs numbering around 150 students. Undergraduate students interested in participating were asked to email the principal investigator. Participation was limited to students who reported at least one volunteer service experience involving direct interaction with a person with autism.

Focus Group Protocol and Data Collection

The issue context we wanted to explore with participants was clear from the outset; namely, we wanted to learn about the perceptions and attitudes of parents and students about volunteering with children with autism, identify areas of agreement and disagreement between groups, and then identify whether there was enough common ground so that student volunteering would be a viable activity for both parents and students. What we did not know were the specific attitudes, beliefs, opinions, and perceptions of participants in each group. Focus group questions were developed following accepted guidelines (Krueger, 2000) to elicit this missing information.

To gain a deeper understanding of the promise and challenges of student volunteering, theoretical sampling was used where volunteering was examined from the viewpoint of parents. Then, the issues raised by parents regarding expectations of volunteers were discussed with students, followed by further discussion with parents to consider the issues raised by the students as well as the parents of the first two focus groups (Corbin & Strauss, 2008). In this way, the motivations for, challenges, and promise of volunteering could be examined from different perspectives. A total of six focus groups were conducted, four with parents and two with students. There was an average of seven participants in the four parent groups (range = 6–9) and six in the two student groups (range = 4–7). Two parent groups were conducted first, followed by the two student groups and then two additional parent groups. Issues and comments mentioned in earlier groups were raised by the moderator for exploration in later groups. In this way, both students and parents had an opportunity to react to relevant comments from a prior session.

Questions for the first two focus groups explored parent needs for respite care, how these needs can be met in general, and then how parental needs might be met by undergraduate volunteers (see Appendix A). The two student focus groups explored motivations for volunteering to support individuals with autism and willingness to meet parental expectations that surfaced in the earlier groups such as undergoing adequate training, shadowing experienced volunteers, and making a significant commitment to the child (see Appendix A). Discussion also focused on ways of balancing student needs and parental expectations. The last two parent groups touched on issues brought up in earlier groups as well as whether and how disagreements or differences in expectations between parents and volunteers could be reconciled, common ground explored, and assessments made of rival conclusions (Patton, 2002; see Appendix B).

This design supports two types of replication: literal replication, in which multiple examples of outcomes are examined, in this case two to four focus groups per participant type, and theoretical replication, in which outcomes for different types of participant groups, parents or students, are examined (Yin, 2009). Question phrasing for use with each successive group was shaped by research team members who were experienced in autism research and practice from public health, psychological, and educational perspectives. An interview guide for the focus groups was developed with structured questions but also flexible, with probes to fully explore the nuances of the respondents’ feelings and perspectives (Yin, 2009). The goal was to understand the experiences of the participants in their own words and not constrain the expression of their perspectives by our expectations. Copies of the parent and student focus group interview guides are included as an appendix.

Focus group settings included classrooms, conference rooms, and homes where parent (usually mothers) support groups convened. The moderator began each focus group by introducing himself, greeting the participants, and inviting the participants to help themselves to snacks and drinks provided. The offer of food prior to consenting sought to avoid the perception among invitees that refreshments were a reward for those agreeing to participate. The purpose of the focus group was then stated, and a consent form was distributed and read aloud. The consent form included general information about the study, risks associated with participation, efforts to mitigate risks, and contact information of the principal investigator. Focus groups were audiotaped, and an assistant took notes. Subsequently, audiotapes were transcribed and integrated with the notes prior to data analysis. This study was deemed low risk and was exempted from human participants oversight by the Institutional Review Board at the University of North Carolina at Chapel Hill.

Data Analysis

A grounded theory approach (Glaser & Strauss, 1967) guided data analyses to identify the content of parent and student opinions and expectations. Broad categories were identified on reviewing the transcriptions and notes for units of text or “incidents” reflecting either parent or student needs, perceptions, or expectations about student volunteers for a child with autism. The constant comparative method was used to synthesize and compare text segments within and between parent and student focus groups (Krueger, 2000; Krueger & Casey, 2014; Padgett, 1998; Patton, 2002). Occasionally, more specific categories within a broad category were identified, and new codes were given to reflect these new categories. Units of text within each category were compared throughout the analysis and then synthesized into the four themes discussed in this report.

Perceived Benefits

Most of the parents were enthusiastic about undergraduate volunteers and cited several advantages. One parent thought “the kids would enjoy someone closer to their age.” They reported their children as being more responsive to those outside the family, especially “cool” older students. A few parents who did not meet eligibility requirements for local autism services expressed hope that undergraduate volunteers could fill this void.

Undergraduates felt strongly about volunteering in the autism community because it is “really rewarding,” and they feel they are “really making a difference in a family’s life.” In addition, other volunteer reported benefits included attaining “character” and “perspective,” “learning to think on your feet,” and especially “acquiring patience.” Volunteers also mentioned resume purposes of volunteering as well, stating it “looked better for grad school,” and referenced graduate schools that would prepare them for a career within or related to the autism field.

Structuring Volunteer Services

Participants explored multiple dimensions of the ways student volunteer services can be structured. These dimensions included the purpose of the service (teaching/coaching, social time, or family assistance), type of service (inclusion in activities with neurotypical children, one-to-one interaction, or autism group activities), setup or infrastructure (volunteer support or programs matching children by level of need), and length of commitment to an individual child.

Volunteer Qualifications

Issues raised over the topic of volunteer qualifications differed between parents and volunteers. Parents brought up the issue of background checks when the topic of volunteer skills was raised, and then proceeded to state both technical and non-technical qualifications they sought in volunteers. Technical qualifications included things that could be learned through training or experience, such as teaching methods conducive to a child with autism. In contrast, the non-technical qualifications mentioned by parents often related to character traits such as patience and persistence. Volunteers did not feel techniques were as important as self-confidence and discussed boundaries to volunteering, which are described below under “Issues considered only by volunteers.”

Strategies to Address Parent and Volunteer Concerns

Parents and volunteers in the third through sixth focus groups were given the opportunity to develop strategies to address the concerns that had been raised in earlier focus groups. Strategies included identifying useful volunteer characteristics and building on these characteristics with training and ongoing mentoring.

Suitable volunteer characteristics identified by both parents and students included adaptability, perseverance, humor, understanding, and compassion. Participants emphasized that “more than anything else it is being confident in the face of unpredictable circumstances.” Parents desired training for volunteers to address “using schedules and finding out what ways to best communicate with the child,” as well as “learning how to redirect behaviors positively.” The majority of students felt the training should not last longer than an afternoon, but a few favored a daylong training. Students also felt that they needed an academic advisor experienced enough with autism to approve a training regimen and supervise it. Another option identified was to have a partner organization in the community provide the training.

In addition to training, many volunteers and parents stated they “would want the students to have access to a coach or mentor of their own.” Volunteers agreed “having really informed coordinators who are willing to provide a lot of support and training is huge” because “it is a complex population” and “the supports that they need are unique.”

To overcome the specific concerns of newer volunteers, the following methods were proposed: small, consistent volunteer groups to create friendly group settings, shadowing opportunities for inexperienced volunteers, available supervisors for help (mentioned above), and simply encouragement from passionate leaders and other volunteers.

Finding Common Ground

Although there was a divergence in the parents’ expressed need for consistency and the volunteers’ schedules being inconsistent at times, parents accepted this as a necessary trade-off of accepting student help. The one provision they insisted on was that volunteers had to let them know in advance when they were going to be unavailable. Volunteers also viewed consistency as essential, stating that this helps create regularity in their volunteer schedule and that “it does take work to understand someone” with autism, so “keeping the relationship consistent . . . is a big thing.” Because both parties considered consistency crucial, this accommodation would likely be mutually respected in the volunteering process.

Parents and volunteers, however, disagreed about the appropriateness and value of inclusion activities, and neither group identified feasible strategies to resolve this matter. The majority of parents voiced negative comments regarding inclusion programs, stating they usually “have lots of parallel play and not much interaction.” However, all volunteers wanted more services revolving around this approach. Although parents of children with fewer support needs proposed an inclusion format where student volunteers set up activities at school, this conflicted with volunteer transportation difficulties. It was unclear from student focus group discussions whether inclusion was a strongly held belief of the volunteers or whether they were endorsing a socially acceptable idea.

Parents had mixed feelings about matching, some embracing it and others worried it would not work, while almost every student volunteer supported it. Some parents who have children with behavior problems embraced this approach because they “would be looking for someone who has been around that behavior . . . or would be willing to commit to behavior problems.” A variety of suggestions were made in the focus groups about matching children with autism for group activities on four criteria: (a) differences in support needs, (b) age differences, (c) parent preferences, and (d) student interests, capabilities, and experience.

There was a variety of opinions between parents and volunteers over preferences with one-to-one interaction and social group interactions. Most parents had reservations about group settings for volunteer activities because they felt that their children do not do well in groups. One parent stated, “I think parents may tend to say one-to-one time stressing that because it tends to be probably more successful but I think it would depend on the individual and the circumstances.” One suggestion that both groups discussed that may accommodate these differences is having the group settings in an area that can allow volunteers and children with autism to branch off from the group and interact one-to-one while the rest of the group or a supervisor is still in the same room or at least within eyesight. With this hybrid approach, parents felt that their children could still attempt a group setting, and if it did not work out, they could transition to a one-to-one activity with a student volunteer.

Recommendations

One important issue that was not explicitly considered in the focus groups is how best to organize and sustain student volunteers for families in the autism community. We believe the best mechanism for this is a campus-organized student group. Such a group has an intimate connection with the student body, and through this connection, it can more easily communicate with, recruit, and retain volunteers than any other entity. It also fulfills many of the reasons undergraduates embrace volunteering, such as feeling they are part of a group, something bigger than themselves, and providing a social opportunity. Being a member or officer of a student organization also builds undergraduates’ resumes.

A campus-organized sponsor would also address many common ground concerns. A student organization can meet the expectations of parents for consistency, background checks, training, and ability to handle their child’s behaviors. Parents were less demanding with regard to training expectations that due to their emphasis on non-technical qualifications both parents and volunteers felt training could not teach effectively, such as consistency and adaptability. Background checks, and, in many cases, a moderate level of training, can likely be provided by a local community service organization in collaboration with the student organization. For these reasons, as well as legal protection and reaching the target population, it is strongly recommended that campus sponsors partner with a local organization in the autism community. Although many local community organizations may not have the capacity to assist with all aspects named above, it is very likely that the student organization will benefit simply from the guidance and networking available through the autism organization.

Student organizations may find success by focusing on group settings and avoiding situations where the volunteer and child are alone, not only to minimize legal risk but also because it is likely group setting activities can still accommodate one-to-one interactions (e.g., volunteer and child doing activities with each other while the rest of the group does other activities in the same vicinity). It is important to have multiple activities, so that if participants do not get along, they can do individual activities.

Study Limitations

Several limitations of this study should be acknowledged. First, focus group participants were mainly urban Caucasian and Hispanic mothers in North Carolina and therefore do not accurately represent the full population of parents with children with autism in the United States. The close-knit Hispanic autism community gatherings provided a unique opportunity to hold fully attended focus groups in Spanish, raising this ethnic group’s representation in the study. Absent were fathers who might have different perspectives and parents from rural areas that likely have fewer autism resources than do urban areas. Also, because recruitment relied on local organizations and groups that focus on autism, parents who are not active in the autism community were not represented. In addition, several parent participants did not have significant experience with undergraduate volunteers, raising a question about whether and how their opinions and ideas might change after a few service encounters with college students.

Second, we relied on mothers’ reports rather than clinical assessments to characterize their child’s autism and level of need. Moreover, participants were self-selected and likely were parents who had strong opinions, had a greater need for new services, or were relatively more active parents who regularly evaluate all services in the area. In the same way, only undergraduate volunteers with strong interests toward the autism community may have attended.

Third, focus groups rely on the candor of participants. It is possible the parents held back their true opinions to avoid offending anyone, and the undergraduate volunteers may have masked some of their motives or perspectives that would seem dishonorable or not altruistic. In the same way, there may have been comments that parents left out due to fear they would be embarrassed in front of the group. In addition, although the facilitator checked for agreement with the summary notes at the end of each focus group, member checks were not performed following the completion of transcripts.

Implications

A strong interest was found in structuring a respite service through undergraduate volunteers for parents of children with autism on the condition that necessary infrastructure is in place. The infrastructure must ensure background checks, training, and legal protection. Although it may be possible for some student groups to obtain these components with the help of their university or academic advisors, others may need to partner with a community organization that shares the same mission. Further evaluation should be done to characterize legal risks related to undergraduate volunteering, including variability in university legal policy regarding student organizations and the optional ways these risks can be managed.

Although this study suggests that respite services provided by undergraduate students are desirable, further research is needed to investigate their efficacy. In particular, it will be important to identify the tangible benefits that accrue to parents, children, and students from participating in these activities.