Annals of International Occupational Therapy

Original Research Supplemental Data

Piloting a Family-Centered Intervention to Promote Participation Among Latino Children With Autism Spectrum Disorder: A Comparison of Two Delivery Modes

Mansha Mirza, PhD, OTR/L, MSHSOR; Sandra Magaña, PhD, MSW; Ashley Stoffel, OTD, OTR/L, FAOTA; Yue Xu, MSW; Yoonsang Kim, PhD, MPH

Abstract

Objective:

There is a need for family-centered and culturally sensitive interventions for the growing population of Latino children who have autism spectrum disorder (ASD). This study implemented and evaluated the feasibility of a family-centered, culturally relevant, participation-focused ASD intervention that incorporated community health workers, or promotoras. The study also compared two modes of delivering the intervention—independent delivery by an occupational therapist and collaborative delivery by an occupational therapist and a promotora.

Methods:

This pilot randomized controlled trial enrolled 10 Latino mother-child dyads in two intervention groups. Of the dyads, five received the 8-week intervention from an occupational therapist and the other five received services co-delivered by an occupational therapist and a promotora. We assessed the effectiveness of the recruitment and randomization procedures. Outcomes related to the child's participation, the child's social communication, and family empowerment were measured at baseline and at the end of the 8-week intervention. After the intervention, the participants and promotoras were invited to focus groups to provide feedback.

Results:

The recruitment procedures were successful, with 100% retention of participants. Randomization procedures were acceptable to participants and resulted in group equivalence at baseline. Both groups showed improvement in child participation outcomes. Family outcomes improved only in the group receiving services from the occupational therapist plus the promotora. Parents and promotoras found the intervention valuable, with the occupational therapist and the promotoras providing different yet complementary kinds of support.

Conclusion:

Participation-focused interventions that take into consideration family needs and the cultural context hold promise for Latino families who have children with ASD. Involving promotoras in these interventions is feasible and acceptable and can enhance family outcomes. [Annals of International Occupational Therapy. 2020; 3(2):57–67.]

Abstract

Objective:

There is a need for family-centered and culturally sensitive interventions for the growing population of Latino children who have autism spectrum disorder (ASD). This study implemented and evaluated the feasibility of a family-centered, culturally relevant, participation-focused ASD intervention that incorporated community health workers, or promotoras. The study also compared two modes of delivering the intervention—independent delivery by an occupational therapist and collaborative delivery by an occupational therapist and a promotora.

Methods:

This pilot randomized controlled trial enrolled 10 Latino mother-child dyads in two intervention groups. Of the dyads, five received the 8-week intervention from an occupational therapist and the other five received services co-delivered by an occupational therapist and a promotora. We assessed the effectiveness of the recruitment and randomization procedures. Outcomes related to the child's participation, the child's social communication, and family empowerment were measured at baseline and at the end of the 8-week intervention. After the intervention, the participants and promotoras were invited to focus groups to provide feedback.

Results:

The recruitment procedures were successful, with 100% retention of participants. Randomization procedures were acceptable to participants and resulted in group equivalence at baseline. Both groups showed improvement in child participation outcomes. Family outcomes improved only in the group receiving services from the occupational therapist plus the promotora. Parents and promotoras found the intervention valuable, with the occupational therapist and the promotoras providing different yet complementary kinds of support.

Conclusion:

Participation-focused interventions that take into consideration family needs and the cultural context hold promise for Latino families who have children with ASD. Involving promotoras in these interventions is feasible and acceptable and can enhance family outcomes. [Annals of International Occupational Therapy. 2020; 3(2):57–67.]

Latinos are the largest racial/ethnic minority group in the United States (Humes, Jones, & Ramirez, 2011), and Latino children represent a growing population with autism spectrum disorder (ASD) (Patten, Baranek, Watson, & Schultz, 2012). The prevalence of ASD among Latino children increased by 110% between 2002 and 2008, compared with a 70% increase among non-Latino White children (Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators, 2012).

Despite the growing numbers, Latino children are less likely to be identified with ASD than non-Latino White and non-Latino Black children (Baio et al., 2018), even when they meet surveillance criteria for the condition (Mandell et al., 2009). Compared with non-Latino White children, for Latino children, an ASD diagnosis may be delayed from the onset of initial parental concern (Ratto, Reznick, & Turner-Brown, 2016) and is more likely to be made in the presence of more severe developmental delays (Autism and Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators, 2014). Even after diagnosis, Latino children are less likely than non-Latino White children to receive evidence-based care and specialty ASD treatment (Broder-Fingert, Shui, Pulcini, Kurowski, & Perrin, 2013; Magaña, Lopez, Aguinaga, & Morton, 2013). The literature also shows disparities in access to school-based services (Angell, Empey, & Zuckerman, 2018). Specifically, with regard to rehabilitation services, research shows that Latino preschool children with ASD tend to receive less speech and occupational therapy compared with non-Latino White children of the same age (Irvin, McBee, Boyd, Hume, & Odom, 2012).

Several factors are implicated in the diagnostic and treatment disparities for Latino children with ASD. Latino parents report lack of knowledge about ASD and difficulty with navigating service systems and seeking help (Iland, Weiner, & Murawski, 2012; Zuckerman et al., 2014). Language barriers also play an important role. For example, unmet therapy needs are especially high among Latino children with ASD in families who have limited English proficiency (Zuckerman et al., 2017). English proficiency is also strongly associated with knowledge about ASD among Latino parents (Colbert, Webber, & Graham, 2017). Lack of linguistically accessible services exacerbates this problem (Magaña, Parish, & Son, 2015). Service providers may also lack cultural awareness or may misinterpret Latino cultural values (Chlebowski, Magaña, Wright, & Brookman-Frazee, 2018). For example, respeto is a Latino cultural value that manifests as deference to clinicians' authority. Clinicians might misinterpret parents' deferential attitude as lack of interest or unwillingness to engage in their child's treatment. Latino families also value personal and caring interactions with clinicians, based on trust and rapport. Therefore, parents might be reticent to engage with clinicians who do not make the effort to invest in a mutually respectful therapeutic alliance.

Finally, economic barriers may contribute to service disparities for Latino children with ASD. Research shows that children with ASD who come from economically disadvantaged households experience diagnostic delays (Durkin et al., 2010) and receive fewer hours of treatment services. More than 60% of Latino children live in households where one or both parents are immigrants (Murphey, Guzman, & Torres, 2014). Latino immigrant families tend to be economically disadvantaged and therefore may be at high risk for service disparities because of inadequate insurance coverage, inability to afford specialized services, and difficulty accessing services due to transportation costs and loss of parents' wages from missed work (Nguyen, Krakowiak, Hansen, Hertz-Picciotto, & Angkustsiri, 2016).

Taken together, the literature underscores a high level of unmet clinical need among Latino children with ASD, especially those from economically disadvantaged immigrant households with limited English proficiency. Consequently, there is a need for accessible and affordable interventions targeted at immigrant Latino families who have children with ASD. Developing and evaluating family-centered interventions has been identified as an important area in ASD-related occupational therapy practice and research (Polatajko & Cantin, 2010). Adapting occupational therapy practice to identify culturally sensitive, family-centered goals and strategies has the potential to increase participation of children with developmental disabilities and enhance the family's ability to manage their child's needs and modify their environment for success (Dempsey, Keen, Pennell, O'Reilly, & Neilands, 2009). A recent systematic review of family outcomes of occupational therapy interventions for children with ASD found limited evidence for improving outcomes such as parent self-efficacy and coping. Further, the study samples mostly included White families with higher socioeconomic status and educational levels (Kuhaneck, Madonna, Novak, & Pearson, 2015). Thus, there is a great need for research that examines parent and child outcomes of family-centered occupational therapy interventions that target low-income and minority parents and that are culturally appropriate and affordable.

This study sought to (a) develop a family-centered, culturally relevant, and participation-focused ASD intervention for preschool Latino children from immigrant families and (b) test the feasibility and acceptability of the intervention. The study objectives were to (a) successfully recruit, randomize, and retain 10 families; (b) explore the potential of the intervention to improve child and family outcomes; (c) assess the acceptability of the intervention; and (d) compare two modes of delivering the intervention—independent delivery by an occupational therapist and collaborative delivery by an occupational therapist and a community health worker, or promotora.

Methods

Design and Description of the Intervention and Comparison Conditions

We conducted a mixed methods study with a two-group parallel randomized controlled trial with five families in each group. All families received an 8-week program that included weekly 1-hour sessions that were conducted in the family's home. Session content included a comprehensive assessment of the child's participation, structured assessment of the child's home environment and sensory profile, identification of three participation goals for the child, and development and implementation of an individualized, family-centered intervention plan. The intervention plan included a variety of strategies, such as coaching parents on techniques to facilitate the child's ability to engage in an activity or attend to tasks; providing the “just-right” challenge; and providing low-cost environmental adaptations or sensory supports, such as visual schedules, beanbag chairs, and fidget toys.

For participants in the intervention group (OT Plus), the intervention was delivered collaboratively by an occupational therapist and a promotora. A promotora is a peer leader who is from the Latino community and receives training to provide health education (Elder et al., 2005). Promotora programs have been used successfully with Latino parents of children with developmental disabilities and ASD (Magaña, Li, Miranda, & Paradiso de Sayu, 2015; Magaña, Lopez, & Machalicek, 2017).

The promotoras delivered four sessions independently, with the occupational therapist available to consult via telephone (Figure 1). For participants in the comparison group (OT), the intervention was delivered by an occupational therapist only. The occupational therapist was bilingual and bicultural, had master's-level training in occupational therapy and more than 10 years of clinical experience in pediatric practice, and was enrolled in a clinical doctorate program at the time of the study.

Schedule for occupational therapist (OT) plus promotora intervention.

Figure 1.

Schedule for occupational therapist (OT) plus promotora intervention.

Separate intervention manuals were developed for the occupational therapist and the promotoras. Promotoras also received 5 hours of training led by two bilingual pediatric occupational therapists. The training, which included videos and facilitated group discussions, focused on the concept of occupational participation and strategies such as environmental modifications, activity adaptations, and family education that can be used to increase participation of children with ASD. The occupational therapist and the promotoras were also asked to maintain structured case notes. A fidelity checklist was developed, and two of the authors (A.S. and M.M.) independently reviewed case notes from the first five completed cases and found that the intervention was delivered as intended more than 80% of the time. The study occupational therapist was also given feedback based on findings of the fidelity assessment.

Participants

Participants were recruited from two sites, a university-affiliated family clinic for children and young adults with developmental disabilities and a local community organization that coordinates support groups for Latino families of children with ASD. Recruitment brochures and reply sheets were distributed to families in person and by mail. Potential participants could either call the number on the brochure or mail the reply sheet to learn more about the study and schedule a telephone appointment for eligibility screening. To be eligible, each participant had to be an adult who identified as a first- or second-generation immigrant of Latin American descent as well as a parent caregiver of a 3- to 6-year-old child with a parent-reported diagnosis of ASD or positive screen for being at risk for ASD (determined by the Modified Checklist for Autism in Toddlers) (Robins, Fein, Barton, & Green, 2001). The preschool age group was selected because these children are most at risk for missing needed services because they are too old for early intervention services and are not yet receiving school-based services. Eligible parent participants were asked to make an appointment to provide informed consent and complete baseline assessments. All procedures were approved by the institutional review board of the University of Illinois at Chicago. Because this was a feasibility study, power calculation was not conducted. A sample size of 10 was deemed appropriate for feasibility testing.

Parent participants included 10 mothers with an average age of 34 years (SD = 3.7). Six were married, two were in a cohabiting relationship, and two were separated. One mother had experienced long-term domestic violence, and two mothers had more than one child with special health care needs. The mothers had been in the United States for an average of 11 years (SD = 4.6). Eight mothers were originally from Mexico, one was from Honduras, and one was from Peru. All rated their English proficiency as poor to fair. Six mothers had received their education outside of the United States, and the remaining four were educated in both the United States and their country of birth. The highest level of education was high school (n = 2) for those educated in the United States and baccalaureate equivalent (n = 4) for those educated outside of the United States. Only one mother was employed. Of the 10 mothers, 8 reported an annual household income of less than $40,000.

The children included eight boys and two girls, with an average age of 4.4 years (SD = 1.3). All children had a primary diagnosis of ASD from a medical provider, and one child was also diagnosed with fragile X syndrome.

The promotoras were three mothers of children with ASD. All were immigrant Latinos from the same geographic area as the participants, were bilingual or spoke only Spanish, and had been identified as emerging community leaders in ASD.

Randomization

A random number generator was used to generate a single sequence of random assignments (Suresh, 2011). This sequence was known to the first author only and was maintained in a secure password-protected file. During the informed consent process, parents were informed of the randomization process. After informed consent was obtained and baseline data collection was completed with each family, the group assignment for the case was divulged to the family and the occupational therapist.

Measures and Data Collection

Background information included diagnostic information for the child, the child's age and gender, and the parent's age, gender, ethnicity, level of education, household income, marital status, employment status, years since immigration to the United States, and self-reported English proficiency. Each family was also asked about the child's history, frequency, and duration of rehabilitation and other support services.

Clinical assessments included the Spanish version of the Short Sensory Profile (SSP) and an assessment of the child's home environment. The SSP is a caregiver report measure that includes 38 items that demonstrated the highest discriminative power of atypical sensory processing among all of the items from the long version, the Sensory Profile (Dunn, 1999; Tomchek & Dunn, 2007). The SSP is a valid measure of sensory processing (McIntosh, Miller, & Shyu, 1999), and the response process of the Spanish version has been validated with a Puerto Rican sample (Román-Oyola & Reynolds, 2010). The home environment assessment was specifically developed for this study by adapting a home modification resource guide commissioned by the New York State Office for Developmental Disabilities (Braddock & Rowell, 2011). Data on these assessments were collected at the first intervention session and provided information for intervention planning because the short-term intervention was targeted at environmental adaptations and sensory supports.

Outcome measures were obtained at baseline and 1 to 2 weeks after completion of the eight-session intervention. These measures were administered by a trained research assistant who was blind to group assignments. Primary outcome measures included the Preschool Activity Card Sort (PACS) and the Family Outcomes Survey (FOS). The PACS is a measure of participation that includes seven domains: self-care, community mobility, leisure (high physical demand and low physical demand), social interaction, domestic chores, and education (Berg & LaVesser, 2006). It has been validated with a Spanish-speaking immigrant sample and was found to be sensitive to culturally influenced perceptions of participation (Stoffel & Berg, 2008). The FOS is a 24-item measure of family empowerment that has five subscales: understanding the child's strength and needs; knowing your rights and advocating for the child; helping the child develop and learn; having support systems; and accessing the community (Bailey, Hebbeler, Olmstead, Raspa, & Bruder, 2008). The measure is validated for use with early intervention programs and has been translated and validated for Spanish-speaking families (Olmstead et al., 2010).

The Social Communication Questionnaire (SCQ) was included as a secondary measure. The SCQ is a 40-item parent report measure that is often used to assess the level of ASD symptoms (Rutter, Baley, & Lord, 2003). An earlier version of the SCQ has been validated with a Spanish-speaking sample (Vrancic et al., 2002).

Focus Groups

After all of the families had completed the intervention, separate focus groups were conducted with the three promotoras, three parents in the OT group, and two parents in the OT Plus group. One parent from the OT Plus group was interviewed separately because she was unable to attend the scheduled focus group. The interview and the focus groups were facilitated in Spanish by one of the authors (S.M.) who is bilingual and bicultural. Focus groups lasted 45 minutes to 1 hour and addressed participants' experiences with each intervention, challenges encountered, and future recommendations. All data were audiorecorded and later translated and transcribed into English by a research assistant who is bilingual and bicultural.

Data Analysis

The two groups were compared on baseline characteristics with Fisher's exact tests for categorical data and independent samples t tests for continuous data. To examine changes in outcome measures, we first computed average change scores from baseline to postintervention along with 95% confidence intervals. We then compared the groups on change scores using independent samples t tests and Wilcoxon rank-sum tests. We conducted parametric and nonparametric tests because tests of normality are not always accurate for small samples (Öztuna, Elhan, & Tüccar, 2006). An alpha of 0.05 was used for all comparisons.

Qualitative analysis was guided by a directed content analysis approach (Hsieh & Shannon, 2005) and conducted with Atlas.ti software. Two of the authors (M.M. and Y.X.) independently reviewed English transcripts. Emerging observations were noted, compared, and compiled into a codebook that included thematic codes and their definitions. Examples of coding categories included “types of support provided by promotoras,” “types of support provided by the occupational therapist,” and “benefits and challenges of home-based intervention delivery.” The two coders worked independently to apply relevant codes to each transcript, and intercode agreement was 58%. The coders met to identify discrepancies and redefine codes when necessary. Inconsistent application of codes was resolved through discussion and consensus. Each coder independently recoded all transcripts. Interrater agreement was recomputed and was 85%. The final code list was organized into three thematic tables with representative quotations. Two of the bilingual authors (A.S. and S.M.) appraised the thematic tables in light of Spanish audiorecordings of focus groups and provided feedback to ensure the credibility of analytic themes.

Results

Success of the Recruitment and Randomization Procedures

Our recruitment strategy was successful in recruiting three promotoras and 10 Latino mothers of children with ASD. All 10 families completed the eight intervention sessions. Six of them completed sessions within the planned 8-week time frame, and four exceeded this time frame because of schedule conflicts for the families or the study occupational therapist. All 10 families completed the baseline and postintervention assessments, for a 100% retention rate.

None of the recruited mothers objected to being randomized to either of the two study conditions. Randomization procedures were successful in creating two groups with baseline equivalence. Baseline comparisons showed no statistically significant differences between children in the OT and OT Plus groups on SSP total scores or individual sensory performance areas (Table A, available in the online version of the article). At baseline, two children were receiving physical therapy services approximately four times a month, and four were receiving occupational therapy and speech-language services approximately four to six times a month. The groups were not statistically different in terms of the frequency and duration of services received. A total of 30 goals were addressed across all 10 participants (3 per participant). Self-care (sample goal: “child will participate in dressing with environmental supports and tactile cuing for motor planning”) was the most common goal category, followed by education and community mobility (sample goal: “child will remain calm and quiet while at the library to participate in reading time”). The types of goal categories identified at baseline did not differ significantly between the groups (p = 1.0; two-tailed Fisher's exact test).

Baseline Comparison of OT and OT Plus Groups on the Short Sensory Profile (SSP)

Table A:

Baseline Comparison of OT and OT Plus Groups on the Short Sensory Profile (SSP)

Changes in Outcomes

All families met at least one participation goal. Children in the OT group met an average of 2.6 goals, and children in the OT Plus group met an average of 1.75 goals (data on goal attainment were missing for one child in the OT Plus group).

Baseline scores for the PACS extent and satisfaction subscales were not significantly different between the groups (extent subscale, t = −1.034, df = 28, p = 0.31; satisfaction subscale, t = −0.636, df = 28, p = 0.53). Both groups showed significant improvement in PACS extent and satisfaction scores from baseline to postintervention (Table B, available in the online version of the article).

Comparison of Groups on Outcome Measures

Table B:

Comparison of Groups on Outcome Measures

Results for the FOS scores were somewhat different. The two groups did not have significantly different FOS total scores at baseline (t = −0.295, df = 8, p = 0.78). However, both groups showed a decline in FOS total scores from baseline to postintervention, with a greater decline in the OT group. Change scores for the FOS subscales showed that scores decreased for the OT group and increased for the OT Plus group on all subscales except for accessing the community, where both groups showed a decline (Table C, available in the online version of the article).

Comparison of Groups on Family Outcomes Survey Subscales

Table C:

Comparison of Groups on Family Outcomes Survey Subscales

At baseline, children in the OT Plus group showed a lower level of impairment on the SCQ (lower scores indicate better outcomes), although this difference was not statistically significant (t = −1.61, df = 8, p = 0.16). Although both groups showed a trend toward improvement over time, the change in SCQ scores was not statistically different between the groups (Table B).

Acceptability of the Intervention

Mothers in both groups expressed satisfaction with the 8-week program. Focus group data indicated that the occupational therapist and the promotoras offered distinct yet complementary forms of support. Table D, available in the online version of the article, contains representative quotes from participants. For example, families valued the “clinical support and advice” offered by the occupational therapist. This type of support typically included strategies to address challenging behaviors (e.g., modeling, hand-over-hand prompting), improve ADL independence (e.g., using visual schedules, improving sensory tolerance for brushing teeth), enhance academic participation (e.g., using modified writing tools), and support family routines (e.g., establishing and maintaining an activity sequence at home). Promotoras reinforced this clinical advice by offering relevant “material support,” which included tangible articles and resources. For example, when the occupational therapist recommended visual schedules, a promotora helped the family to make the schedules and shared materials that her son had outgrown.

Examples of Different Forms of Support offered by the Occupational Therapist and the PromotorasExamples of Different Forms of Support offered by the Occupational Therapist and the PromotorasExamples of Different Forms of Support offered by the Occupational Therapist and the Promotoras

Table D:

Examples of Different Forms of Support offered by the Occupational Therapist and the Promotoras

The occupational therapist also provided “referral support” to families by referring them to free or affordable community resources. Promotoras supplemented this referral support with informational support. For example, a common referral was to TAP (The Autism Program) centers, which provide a variety of free resources, including visual supports, books on ASD, social skills groups, and parent support groups. The promotoras shared their own experiences with the local TAP center and offered practical tips, such as how to travel there on public transit and how to navigate various community services.

The occupational therapist also provided “advocacy support,” such as advising parents on how to advocate for changes in their child's individualized education program and writing support letters when needed. In such situations, promotoras supported mothers by providing “motivational support,” which included encouraging mothers to ask questions, motivating them to fight on behalf of their children, and encouraging them to persevere when they felt discouraged.

Finally, the occupational therapist also supported mothers through “active listening” by listening nonjudgmentally when they expressed concerns or vented frustrations. The promotoras were able to offer “commiserative support,” which meant not only listening to mothers' concerns but also expressing solidarity through shared experiences.

Focus group data highlighted the perspectives of the mothers and promotoras on the benefits and drawbacks of the three core elements of the OT Plus intervention program: (a) home-based sessions, (b) co-delivery by a peer parent, and (c) therapist-promotora collaboration. Mothers appreciated the opportunity to have therapy sessions at home. Specifically, they appreciated the way that home-based services allowed scheduling flexibility and offered opportunities to involve typically developing siblings. For example, one mother shared that involving her very verbal typically developing daughter in OT sessions helped her son with ASD, who learned by observing his sibling. Home-based sessions also eliminated the inconvenience and expense related to travel and parking. This consideration was especially important when families did not own a car or when the mother did not have a U.S. driver's license. In the words of one mother:

At the house it's better, without having to take everyone out. . . . One's not struggling that it is cold, that my feet are hurting, I'm tired . . . and in the snow, they don't want to go out. . . . It's difficult to take them out and more if you don't know how to drive here.

One mother noted that her child was very distracted during therapy sessions at home. However, she also stated that this problem could be mitigated by helping parents to create a separate, distraction-free space in their home for therapy sessions.

The mothers had mixed reactions to the co-delivery of sessions by a peer parent. Of the three OT Plus mothers who participated in the focus group, two noted that promotoras, who were parents of children with ASD themselves, were better able to understand another parent's situation. Also, having navigated service systems for their own children, promotoras were seen as having more knowledge than the occupational therapist about community resources and practical strategies for navigating service systems. According to one mother:

[Moms] have more resources because they are the ones who move [about in the community] more. The therapist gave me some resources, but . . . moms, since they have special needs children, they are the ones that move more and search more and they have more information.

The third mother, although acknowledging the merits of peer support, also expressed concern that promotoras lacked the requisite clinical knowledge to effectively support the development and participation of other children with ASD. In her words:

It didn't seem to be a very productive program. . . . It didn't seem right to allow a mother of a family to do the therapy. That isn't anything like someone who has studied and knows the different types of behaviors. . . . As a mother, well, we know about autism in a general way, but it's based more on the necessities that your child has.

Regarding therapist-promotora collaboration, a benefit of the OT Plus program was the opportunity to combine clinical and expert knowledge with experiential and lay knowledge. As previously stated, the therapist and the promotora provided complementary rather than competitive support. For example, the occupational therapist worked on clinical assessment and treatment planning, and the promotora worked to build an emotional connection with the family. In the words of one promotora:

While [the occupational therapist] would ask the mother questions, I would try to make a connection with the child so that it could be easier. I would try to have that interaction because many of them don't get close to someone so easily.

However, promotoras reported that occasionally mothers did not take their advice seriously and sometimes sessions did not go as planned. Consequently, they considered ongoing consultation with the occupational therapist during the program essential. One promotora described the need for regular communication and team-work, noting:

When I had to go work alone, directly with the child, I would call [the occupational therapist] when leaving to report how it went. . . . I commented to her that I hadn't had success because the boy would go to the kitchen too much to look for food. . . . She suggested another strategy of placing a snack nearby, something nutritious and healthy, so that the child isn't leaving the work area. . . . So there was a change in the plan . . . that other one was implemented.

Mothers and promotoras also offered recommendations for improving the program. The most common recommendation was to offer the program for longer than 8 weeks. Mothers and promotoras considered the 8-week program too short to meet complex participation goals and insufficient to address all of the family's concerns. One mother recommended more frequent sessions, ideally every day of the week. A second mother recommended expanding the program to include fathers so that they could contribute to their child's participation goals. One mother in the OT Plus group (the same parent who expressed concern about promotoras' lack of clinical knowledge) recommended including the occupational therapist in all sessions to ensure continuity of access to clinical expertise. Finally, one promotora suggested that training for the program should include enhanced content on specific topics, such as fine and gross motor skills and sensory processing. However, the other promotoras reported that the generic training that they received was adequate because children with ASD experience a wide range of challenges. Therefore, they believed that generic knowledge of multiple topics was preferable to in-depth knowledge in one or two areas.

Discussion

To our knowledge, no previous study has implemented a family-centered intervention co-delivered by occupational therapists and promotoras to increase participation in everyday activities among preschool age Latino children with ASD. This innovative mechanism of service delivery can complement occupational therapy services for isolated and underserved communities. All families enrolled in the study completed the intervention and were retained from baseline to postintervention assessment. Our qualitative analysis showed that an important reason for successful participation and retention was that sessions were delivered in each family's home, according to the family's convenience.

Overall, effects on child outcomes were promising, regardless of whether the intervention was delivered by the occupational therapist alone or in conjunction with a promotora. Although preliminary, the overall pattern of positive effects on outcomes supports the idea of individualizing interventions in response to family-identified goals. This finding is in line with previous research, which suggests that attainment of goals for children with ASD is likely to be successful when interventions are individualized and when they use goals that are important to families (Schaaf et al., 2014).

Contrary to our consistent findings between the two groups on child outcomes, family outcomes were divergent for the groups. Although the OT group showed a decline in total and subscale scores for the FOS, the OT Plus group showed improvement on most subscales. The FOS measures parents' sense of empowerment in helping their child to develop and learn and in finding services and resources. Our data suggest that the promotora model holds promise for empowering mothers and making them feel capable of carrying out strategies. Our qualitative findings showed that promotoras provided much-needed motivational and commiserative support. Research shows that parents of children with disabilities derive a strong sense of support and empowerment from networking with other parents who have endured similar challenges and have mastered the process of navigating diagnostic screening, follow-up care, and social services (Mirza, 2016). This sense of shared identity and connection may be critical for immigrant parents, who tend to be isolated because of language barriers and lack of familiarity with U.S. service systems (King, Lindsay, Klassen, Esses, & Mesterman, 2011).

Future OT interventions for immigrant and minority children with ASD could be enhanced by incorporating promotoras or peer mentors into service delivery. Despite its rising popularity in health care delivery, the strategy of partnering with promotoras is new to the field of occupational therapy. Our findings show how promotoras can complement rather than substitute for occupational therapists. The categories of promotora support activities that we found in our study overlap to some extent with those reported earlier. For example, Ireys, Sills, Kolodner, and Walsh (1996) proposed a social support framework to define the role of parent mentors for families of children with disabilities and chronic illness. This widely used framework identified three types of support provided by parent mentors: (a) informational, (b) affirmational, and (c) emotional. Our study found a fourth unique category of material support where promotoras, of their own accord, shared material resources and hand-me-downs with the families they served. In addition, in our study, promotoras offered emotional support that was more nuanced than “listening to parents' concerns” and “being there” for parents (Ireys et al., 1996), including elements of motivational and commiserative support.

Support provided by promotoras may have contributed to the improvement in FOS subscale scores noted in the OT Plus group. A notable exception was the accessing the community subscale on which both the OT and OT Plus groups showed a decline. Therefore, another implication of our findings is the need to strengthen the component of our intervention that focuses on accessing community resources. Although parts of sessions 5 and 8 were dedicated to discussing community resources with parents, the intervention might benefit from a full session dedicated to educating parents about finding specific resources, preparing for appointments, and communicating assertively with providers, in addition to other advocacy skills. It would also be helpful to emphasize this content during the promotora training.

Future iterations of the intervention program might also be offered for a longer duration, as recommended by both parents and promotoras. Currently, there is no expert consensus or published guideline for the recommended amount of pediatric occupational therapy to optimize outcomes. A content analysis of 123 pediatric occupational therapy intervention studies found the average dosage parameters of interventions to be approximately 1-hour sessions over 12 weeks (Gee et al., 2016). Therefore, future research is needed to compare the effects of the original 8-week version of the program with a longer 12-week version and to test the effects when the amount of therapy is individualized based on each family's needs and response.

This study used a bilingual and bicultural occupational therapist. However, the OT Plus model may be even more promising when used with an occupational therapist who does not speak Spanish because it could provide a way to extend culturally competent services when bilingual clinicians are unavailable. Collaborating with promotoras will allow non-Spanish-speaking occupational therapists to serve Latino families more effectively.

Limitations

Our findings should be interpreted with caution, given a few limitations of the study. First, we relied on parent reports of the child's ASD diagnosis as well as the child's participation in daily activities. Future studies would benefit from verification of the diagnosis and severity of ASD by using validated screening measures administered by professionals. The rigor of the study would also be enhanced through objective assessments of child participation and direct observations of mother-child interactions in addition to parent-reported outcomes and focus groups. Member checking also would have enhanced the credibility of qualitative findings. Finally, this was a pilot study with a small sample size. Therefore, p values must be interpreted with caution. Given the small sample, analysis did not correct for multiple tests or include covariates. However, we have followed recommendations from the literature and included confidence intervals to help readers to infer the size and direction of the treatment effect (Lee, Whitehead, Jacques, & Julious, 2014). It is important to replicate this study with a larger sample and examine the long-term effects of the OT Plus intervention.

Conclusion

Our pilot findings suggest that the family-centered, culturally relevant, and participation-focused ASD intervention was both feasible and promising. Inclusion of promotoras to deliver the intervention was acceptable to Latino families, and the co-delivered intervention yielded better results for family outcomes on most subscales. This finding contributes to our understanding of different mechanisms of service delivery for underserved minority groups. It is important to test the efficacy of the co-delivered intervention with a larger sample.

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Baseline Comparison of OT and OT Plus Groups on the Short Sensory Profile (SSP)

SSP Performance Area (data reported as frequencies)OT (n=5)OT Plus (n=5)Test Statistic (Fisher Exact, 2-sided)
Tactile SensitivityTypical Performance01p=1.0
Probable Difference11
Definite Difference43
Taste/Smell SensitivityTypical Performance03p=0.17
Probable Difference20
Definite Difference32
Movement SensitivityTypical Performance23p=1.0
Probable Difference32
Definite Difference00
Underresponsive/Seeks attentionTypical Performance20p=0.68
Probable Difference11
Definite Difference24
Auditory FilteringTypical Performance10p=1.0
Probable Difference12
Definite Difference33
Low Energy/ WeakTypical Performance12p=1.0
Probable Difference00
Definite Difference43
Visual/Auditory SensitivityTypical Performance31p=0.46
Probable Difference02
Definite Difference22

Comparison of Groups on Outcome Measures

BaselinePost-InterventionChange (Baseline - Post)T: t-test, W: Wilcoxon Rank Sum test

M (SD)MedianM (SD)MedianM (SD)95% CIp-value
Preschool Activity Card Sort Extent of participation (n=15 per group)
OT Plus2.6 (1.9)2.06.3 (3.1)7.03.7 (3.6)1.70, 5.640.013T= −0.41 (p=0.69)
OT3.2 (1.2)4.06.4 (2.8)7.03.2 (2.6)1.75, 4.650.003W=232.5 (p=1.00)

Preschool Activity Card Sort Satisfaction with participation (n=15 per group)
OT Plus3.4 (2.7)2.06.3 (3.0)7.02.9 (3.4)1.18, 4.620.03T= −0.10 (p=0.92)
OT4.1 (3.3)2.06.9 (3.2)7.02.8 (3.9)0.83, 4.770.05W=236.5 (p=0.88)

Family Outcomes Survey Total Score (n=5 per group)
OT Plus62.6 (18.7)67.061.6 (9.5)64.01.0 (10.8)−8.47, 10.470.85T=0.70 (p=0.51)
OT66.0 (17.7)75.058.2 (22.0)62.07.8 (18.9)−8.77, 24.370.41W=27.5 (p=1.00)

Social Communication Questionnaire (n=5 per group)
OT Plus16.4 (3.5)18.014.0 (3.3)15.02.4 (3.4)−0.58, 5.380.19T= −0.41 (p=0.70)
OT21.4 (6.0)22.020.4 (7.0)22.01 (6.8)−4.96, 6.960.76W=27.0 (p=1.00)

Comparison of Groups on Family Outcomes Survey Subscales

BaselinePost-InterventionChange (Baseline - Post)T: t-test, W: Wilcoxon Rank Sum test

M (SD)MedianM (SD)MedianM (SD)95% CIp-value
Understanding child's strength and needs
OT Plus11.2 (1.3)11.011.8 (2.9)13.0−0.6 (2.7)−2.97, 1.770.65T=1.00 (p=0.35)
OT11.6 (4.0)13.010.6 (5.2)10.01.0 (2.3)−1.02, 3.020.39W=32.5 (p=0.36)

Knowing your rights
OT Plus8.8 (6.1)7.010.0 (5.8)11.0−1.2 (3.6)−4.36, 1.960.5T=1.05 (p=0.32)
OT11.8 (4.8)12.09.4 (5.4)13.02.4 (6.8)−3.56, 8.360.47W=32.0 (p=0.42)

Helping your child develop and learn
OT Plus9.6 (4.6)9.010.2 (3.1)11.0−0.6 (2.1)−2.44, 1.240.56T=1.55 (p=0.16)
OT11.2 (3.7)11.09.4 (3.8)10.01.8 (2.8)−0.65, 4.250.22W=34.0 (p=0.23)

Having support systems
OT Plus12.0 (4.5)10.013.0 (3.0)14.0−1.0 (6.0)−6.26, 4.260.73T=0.49 (p=0.64)
OT12.4 (3.0)12.011.8 (4.5)11.00.6 (4.2)−3.08, 4.280.77W=31.0 (p=0.54)

Accessing the community
OT Plus21.0 (15.8)21.016.6 (4.1)18.04.4 (11.9)−6.03, 14.830.45T= −0.40 (p=0.70)
OT19.0 (5.5)21.017.0 (4.7)17.02.0 (6.0)−3.26, 7.260.5W=27.5 (p=1.00)

Examples of Different Forms of Support offered by the Occupational Therapist and the Promotoras

Support provided by OTSupport provided by promotoras

Clinical Support in the form of:Material Support

Strategies to address challenging behaviors

“Taking turns for the patience, taking turns where he had to wait[OT] would put him with a table game, not to do it exactly but for example put a card and now it's mommy's turn, now it's [promotora's name] turn and like that and he would wait.” (OT plus promotora focus group)

Strategies to improve ADL independence

“They helped me a lot, [my girl] did not allow anyone to brush her teeth. [OT] gave me suggestions… she explained a lot of things that I did not know. So she did help me. I am satisfied… It helped me with my goals of brushing her teeth. She could not stand the toothbrush in her mouth and now I tell her to brush and... now I leave her with the toothbrush.” (OT only focus group)

Strategies to enhance academic participation

“…one goal that the [client] had was fine motor to hold the pencil right and the teacher from school was also participating because she was giving her resources as well. [OT] provided her with supports to put on the pencil and the teacher gave her other ones, and there they saw which ones were the ones that worked better.” (Promotora focus group)

Strategies to support family routines

“Well one thing that was hard for us is to follow a routine. And [OT] taught us how to follow a …[my son] was too hyperactive he could not be still. So at home he does that and does other and then he goes up the stairs and then he goes to do another thing…he could not be still. So [OT] would tell us it is because when he goes to school the child is used to following a daily routine and when he is at home he does not know what to do, he has no organization…So we just started to do that and the child keeps a little hyperactive but it is less than in the beginning.” (OT only focus group)

“I would take [child's mom] the resources, I would help her and I would tell her this worked for me, here are these other resources, there's this. Between [OT] and me we made what were the schedules um I made her PECS [Picture Exchange Communication Systems] depending of the need of the boy or girl. It depended on what the girl liked, she liked the compensation. And so from there, things that they had given me, that helped me for my son I passed them to her. They worked for me, they can work for you. Apart from what they had given us, I gave her a lot of materials that I had.” (Promotora focus group) “Another goal of [client] was to go to the bathroom. I gave [child's mom] the charts to sit, wash her, like lower her interior clothing, clean herself and wash her hands with soap, the towel and everything was there…the girl loved happy faces so I went to make her a reward chart with smiley faces because it was something that she liked.” (Promotora focus group)

Referral SupportInformational Support
“…they did help me a lot, information on a library that I take [child's name] to, a lady from [child's name] public school who didn't help me with anything…They gave me a lot of information and I would tell them about the problems that I had and [OT] would send me copies of people who could help me.” (OT + promotora focus group)“I didn't know of other places that could help me or help centers and well yes…the lady who was the promotora, well she would encourage me...because she would also say that she gets around on transportation because she didn't drive and I told her yes um well I am going to try to go to all the places that she gave me and yes I went to [Inaudible] to put the children for help on the wait list and um there they give resources, the center of resources of visual supports.” (OT + promotora focus group)

Advocacy SupportMotivational Support
“We struggled a lot because when [son's] first evaluation was to plan his schooling they put him in a classroom with 18 children … in the program that they call blended…from the first day the teacher would call to say the child was hitting the other kids and that he was not still and not paying attention. So it was frustrating for us and when [OT] arrived, she helped us find him other resources and to ask for another meeting...she also made the letter and sent it to where they did the first school meeting in downtown. And right away the lady told me that she received it and was going to visit the school to see the child and then [OT] told me for me to keep calling the school to ask for the school counselor “I want my meeting, I want my meeting” until they gave it to me…” (OT only focus group)“…[mothers] saw for example, the experience [of promotoras] and how we could help and listen. For example…the mother who has worked with her children all day and night and so they felt really, really good. They told me that it's nice to see a person who can push their children forward and… that they motivate” (Promotora focus group) “[Promotora] asked me about the IEP of the boy and I don't know anything about that. She asked me do you know what it means that they wrote here? The syndrome that they wrote down for your son? Well the truth is I don't know and she said you have to learn. She said because in the future you have to defend him and you have to know what every single letter there means.” (OT + promotora focus group)

Attentive ListeningCommiserative Support
“And [OT] was also of a lot of help because more than anything it happens to me even though I have a lot of family like I talk oh look my child this and “oh okay”. Like I feel they don't care or I tell my brothers and “oh”? It is not that they don't care but they are like me with very few words. It is like they can't find what to tell me but with [OT] I would let everything go- look I feel like this- more support- moral support of her listening. I felt like I would vent she cared and knew well she understood what I was going through.” (OT only focus group)“…the therapists they like work on the problem but they don't see like the human side or the side of the problems, of what us parents feel when our children are looked down upon on the streets, and that people get upset with us …many experiences of what we go through or they are going through and they help us learn about ourselves and we help them learn about them like I had this situation and I reacted like this, this helped me.” (Promotora focus group) “I liked it because I tell you that it worked…for example [promotora's name] since she has a special child, she knows everything that one goes through and she understands us more and so she has the experience.” (OT + promotora focus group)
Authors

Dr. Mirza is Associate Professor, Department of Occupational Therapy, University of Illinois at Chicago, Chicago, Illinois. Dr. Magaña is Professor, Steve Hicks School of Social Work, The University of Texas at Austin, Austin, Texas. Dr. Stoffel is Clinical Associate Professor, Department of Occupational Therapy, University of Illinois at Chicago, Chicago, Illinois. Ms. Xu is doctoral candidate, Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois. Dr. Kim is Senior Research Scientist, NORC at the University of Chicago, Chicago, Illinois.

The authors have no relevant financial relationships to disclose.

This research was funded by an Intervention Research Grant from the American Occupational Therapy Foundation (AOTF). Statistical analysis for this project was partly supported by the National Center for Advancing Translational Sciences, National Institutes of Health (NIH), through grant UL1TR002003. The contribution of coauthors Magaña and Xu was partly supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), a center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS), through grant 90RT50320-01-00. The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the AOTF, NIH, or NIDILRR.

The authors thank the staff at the UIC Developmental Disabilities Family Clinic and Grupo SALTO for their help with recruitment. This project also benefited from the contributions of research assistants Esmeralda Vasquez, Alejandra Villaneuva, Marlen Garcia, and Melina Marte.

Address correspondence to Mansha Mirza, PhD, OTR/L, MSHSOR, Associate Professor, Department of Occupational Therapy, University of Illinois at Chicago, 1919 W. Taylor St., MC811, Chicago, IL 60446; e-mail: Mmirza2@uic.edu.

Received: May 20, 2019
Accepted: August 23, 2019
Posted Online: October 25, 2019

10.3928/24761222-20191018-04

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