Abstract
The rising prevalence of autism spectrum disorder (ASD) is translating into more young children being referred for occupational therapy services (Boyd, Odom, Humphreys, & Sam, 2010). Additionally, there is a discrepancy between the demand for and the availability of occupational therapy services for children with ASD, particularly for underserved and rural families (Wise, Little, Holliman, Wise, & Wang, 2010). Families in rural and underserved areas are subject to a shortage of services (Liptak et al., 2008; Merwin, Hinton, Dembling, & Stern, 2003), which may negatively affect children’s developmental trajectories by limiting access to evidence-based interventions during the critical early years.
If occupational therapy interventions for young children with ASD use innovative methods of service delivery, we can increase the number of families who receive services and positively influence child and family outcomes. Telehealth is a mechanism that allows intervention services to be delivered at a distance, and the effectiveness of occupational therapy delivered via telehealth is emerging (Cason, Behl, & Ringwalt, 2012; Zylstra, 2013). The purpose of this study was to evaluate the efficacy of Occupation-Based Coaching delivered via telehealth for families of young children with ASD.
In early intervention, coaching has recently been highlighted as a best practice method, which targets caregiver and child function by building family capacity (Adams & Tapia, 2013). Occupation-Based Coaching is rooted in principles consistent with Occupational Performance Coaching (Graham, Rodger, & Ziviani, 2009, 2010), Early Childhood Coaching (Rush & Shelden, 2011), and contextual intervention (Dunn, Cox, Foster, Mische-Lawson, & Tanquary, 2012). This model directly involves caregivers in creating strategies to increase children’s participation in daily activities across natural contexts. Occupation-Based Coaching is an intervention that combines the principles of coaching with occupation-centered reasoning (Graham, Rodger, & Ziviani, 2013). The process of this model of coaching includes (1) setting goals, (2) exploring options, (3) planning action, (4) carrying out the plan, (5) checking performance, and (6) generalizing (Rush & Shelden, 2011). Although previous studies have supplemented in-person sessions with teleconferencing (e.g., Vismara, Young, & Rogers, 2012; Wainer & Ingersoll, 2015), research on the efficacy of providing Occupation-Based Coaching via telehealth for families of young children with ASD is needed.
Many interventions for families of young children with ASD are considered parent-mediated interventions; that is, interventions use caregivers to implement prescribed strategies to increase children’s developmental skills. Occupation-Based Coaching diverges from other parent-mediated interventions because it encourages parents to create their own strategies to match their unique circumstances rather than implementing a therapist’s recommendation. Parents identify goals that align with their family’s current needs and identify how child achievement of such goals looks in everyday routines. Studies have shown that through the Occupation-Based Coaching process, many parents identify children’s adaptive behavior as a target for intervention (Simpson, 2015). Other intervention methods for young children with ASD often target social communication (Baranek et al., 2015; Kasari, Gulsrud, Paparella, Hellemann, & Berry, 2015); however, parents often require occupational therapy services to increase children’s adaptive behaviors, such as toileting, eating, and sleeping. The combination of solely parent-identified strategies, parent-identified goals, and parent implementation and evaluation of effectiveness of strategies in everyday life makes Occupation-Based Coaching unique from other intervention practices.
Occupation-Based Coaching has been shown to be an effective method of increasing parent efficacy and child participation, and telehealth is an effective service delivery mechanism for families of children with ASD. Research is needed, then, to test the efficacy of Occupation-Based Coaching for families of very young children with ASD and the extent to which this practice may be efficacious via telehealth. Therefore, the aim of this study was to investigate the extent to which Occupation-Based Coaching via telehealth is efficacious in affecting caregiver competence and child participation over 12 wk.
Method
Recruitment
Participants were recruited through early intervention and early childhood programs; we targeted programs in rural and underserved areas. Families were included in the study if they had a child up to 6 yr old with a diagnosis of ASD and primarily spoke English in the home.
Procedure
When families contacted our research team, we completed a screening interview to ensure that they met the inclusion criteria. Families were then mailed consent forms and baseline questionnaires. Before completing the first intervention session, a study coordinator obtained consent and answered any of the family’s questions. An occupational therapist assigned to the family coordinated via email to complete the first intervention session. All intervention sessions were conducted via Zoom (https://www.zoom.us/), an online teleconferencing service. Zoom provides a secure online platform, offers end-to-end encryption, and meets compliance requirements of the Health Insurance Portability and Accountability Act of 1996 (Pub. L. 104-191). Before each intervention session, the provider sent families a link to join a Zoom meeting, and families simply had to click on a link to teleconference. Families could use computers, tablets, or smartphones to teleconference; no families expressed difficulty or needed directions to use Zoom.
Intervention
Occupation-Based Coaching focuses on increasing positive child–caregiver interactions and child-learning opportunities in everyday routines and contexts, which positions families for improved trajectories over time. It capitalizes on families’ strengths while supporting caregivers in using their own resources and ideas to advance child function. Caregivers identify goals; therapists ask reflective questions and make reflective comments, affording caregivers an opportunity to gain a deeper understanding of their own current knowledge and the impact of their strategies on their children’s adaptive behavior (Rush & Shelden, 2011). Thus, families generate their own solutions and are ultimately responsible for carrying out the intervention and evaluating its effectiveness (Dunn et al., 2012; Graham et al., 2013). Moreover, because children are increasingly involved in everyday family activities and routines (as opposed to traditional isolated skill-based interventions), caregivers have more opportunities to discover relevant child-learning activities. When families use their own routines, the children get the practice necessary to build function.
The Occupation-Based Coaching process includes the following five key principles (adapted from Rush & Shelden, 2011):
Authentic contexts. Authentic contexts are the places in which the child and family situate themselves in everyday life and are settings for intervention.
Family’s interests and routines. Providers support caregivers in creating strategies that can occur within naturally occurring family routines and interests. By doing so, providers do not disrupt the natural cohesiveness and structure of the family and provide authentic opportunities for practice.
Caregiver interaction and responsiveness. The provider supports the transactional relationship between the caregiver and child as the basis for caregiver insights about the child’s behavior. Using the family’s patterns creates a chance to foster the family’s strengths.
Reflection and feedback. The provider and caregiver talk through ways to increase the child’s participation and to evaluate the effectiveness of strategies that the family tries in between sessions as the problem-solving method. The reflection and feedback process builds the caregivers’ knowledge and insights.
Joint plans. The provider and caregiver identify what each will accomplish between sessions to address the family’s goals. The provider and caregiver evaluate the effectiveness of the strategies at each subsequent session.
Measures
We gathered data before and after intervention. Given the naturalistic setting and focus of the intervention, the following measures provided an ecologically valid assessment of children’s and families’ functioning across settings and activities. During the first intervention session, occupational therapists completed a routine-based questionnaire with families to understand families’ everyday activities; on the basis of this initial session, parents identified goals for the intervention.
Demographic Form—Family.
The Demographic Form–Family (unpublished) is a questionnaire about the families’ backgrounds, including ethnicity, parent education, socioeconomic status, and family composition.
Sensory Profile–Second Edition.
The Sensory Profile–Second Edition (SP–2; Dunn, 2014) is an 86-item parent-report measure of a child’s sensory processing characteristics, and it provides scores on sensory systems, behaviors related with sensory processing, and sensory processing patterns. We used the appropriate version of the SP–2 (i.e., Toddler or Child) to understand how children’s sensory processing patterns were affecting performance in everyday activities.
Social Responsiveness Scale–Second Edition.
The Social Responsiveness Scale–Second Edition (SRS–2; Constantino & Gruber, 2007) is a 64-item caregiver report quantitative measure of autism features. It has a single-factor structure (Frazier et al., 2014) and convergent validity with the Autism Diagnostic Observation Schedule–Second Edition (Lord et al., 2012).
Parenting Sense of Competence Scale.
The Parenting Sense of Competence Scale (PSOC; Johnston & Mash, 1989) is a 17-item instrument that comprises two subscales (Parent Efficacy and Parent Satisfaction) rated on a 6-point scale ranging from 1 (strongly agree) to 6 (strongly disagree).
Assessment of Preschool Children’s Participation.
The Assessment of Preschool Children’s Participation (APCP; Petrenchik et al., 2006) is a 45-item scale that characterizes children’s engagement in activities in four categories: play, skill development, active physical recreation, and social activities. It shows strong psychometric properties (Chen et al., 2013).
Canadian Occupational Performance Measure–Second Edition.
The Canadian Occupational Performance Measure–Second Edition (COPM–2; Law et al., 1998) is an outcome-based assessment in which people and caregivers identify goals in self-care, productivity, and leisure. Parents rate performance and satisfaction on a scale ranging from 1 (not satisfied) to 10 (extremely satisfied).
Goal Attainment Scaling.
Goal attainment scaling (GAS) is a method of documenting, quantifying, and charting progress on goals in everyday life. In this method, a parent identifies the child’s current behavior and then crafts behavior descriptions that illustrate progressive behavioral improvements. The 4-point scale (0 = What does the child behavior look like now?; −1 = What would the child behavior look like if it got worse?; 1 = What would the behavior look like if it got slightly better?; 2 = What would the behavior look like if it were perfect?) was used for the current study. Across pediatric studies, the GAS method has demonstrated sound psychometric properties (for a review, see Steenbeek, Ketelaar, Galama, & Gorter, 2007).
Data Analysis
We used descriptive analyses to examine the number of telehealth sessions that families completed and the commonalities among family-specified goals. We then used paired sample t tests to examine changes in parent efficacy (i.e., PSOC) and child participation (i.e., APCP, COPM–2, GAS) from pre- to postintervention. We used mean scores from all measures in analyses. As shown in the Results section, all families (n = 17) completed the PSOC and APCP; however, a subset (n = 2) did not complete GAS and the COPM–2 postintervention.
Results
Participants
We enrolled 19 families of children with ASD up to 6 yr old; 17 families completed the intervention (see Table 1). Two of the families did not complete intervention procedures (1 mother had a baby and could complete only three sessions; 1 mother completed the intake packet but did not begin sessions because of child illness). One family had 2 children with ASD who met inclusion criteria; thus, results reflect 17 families and 18 children.
Participant Characteristics
Note. CA = chronological age; M = mean; SD = standard deviation; SRS–2 = Social Responsiveness Scale–Second Edition.
The t scores were calculated as follows: 75–90 = severe; 66–74 = moderate; 59–65 = mild.
Family Goals
At the beginning of intervention, families identified 2–3 goals, resulting in a total of 42 formalized goals across families. Although 42 formalized goals were set, many families identified different goals or difficult situations that required intervention throughout the study, and families’ informal goals will be analyzed in future studies. Among formal caregiver-identified goals, commonalities arose. Results showed that parents identified the following goals: social interaction (10/43; 23.26%), self-regulation (9/43; 20.93%), toilet training (7/43; 16.28%), eating (5/43; 11.63%), transitions between activities (3/43; 6.98%), sleeping (2/43; 4.65%), play (2/43; 4.65%), safety in the home and community (4/43; 9.30%), and bathing (1/43; 2.32%).
Parent Efficacy
Results indicated that parents showed a significant postintervention increase in parenting efficacy, t(16) = 2.54, p = .022, Cohen’s d = 0.35. Parenting satisfaction did not differ post-intervention, t(16) = 0.41, p = .658, Cohen’s d = 0.09. Parenting competence is related to how a respondent expresses the manageability and expertise that he or she feels as a parent; parenting satisfaction is related to how rewarding and comfortable he or she is with the parenting role.
Child Participation
To measure child participation, we used the APCP, the COPM–2, and GAS (see Table 2). Results of the APCP showed that children’s frequency of activity participation significantly increased (p < .05), and the diversity of activities in which children engaged significantly increased (p < .01). Additionally, children showed a significant increase in play activity frequency (p < .01) and skill development diversity (p < .05). In other words, parents engaged in more play activities with their children and tried a greater variety of skill development activities. Although not statistically significant, effect sizes suggest that children showed considerable increase in the diversity of play activities (d = 0.59) and frequency of skill development activities (d = 0.30).
Child Participation Results
Note. APCP = Assessment of Preschool Children’s Participation; COPM–2 = Canadian Occupational Performance Measure–Second Edition; df = degrees of freedom; GAS = goal attainment scaling.
Fifteen participants reported GAS and COPM–2 scores.
p < .05.
p < .01.
Results of the COPM–2 showed that children had a significant increase in performance in activities (p < .001): mean increase = 2.71 (standard deviation [SD] = 1.36). Parents also showed an increase in their satisfaction with intervention goals (p < .001): mean increase = 2.67 (SD = 1.77; see Table 2). Related to GAS, children showed a significant increase in goal attainment (p < .001): mean increase = 1.65 (SD = 0.83).
Discussion
We found that a 12-wk Occupation-Based Coaching intervention for families of children with ASD delivered via telehealth increased parent efficacy and child participation. In previous studies, researchers have found that intervention methods delivered via telehealth can be effective for families of children with ASD (Lindgren et al., 2016; Vismara et al., 2012). In contrast to other parent-mediated telehealth interventions, the current findings suggest that Occupation-Based Coaching can increase children’s adaptive behavior and other parent-identified goals using telehealth. Specific to this study, parents of children with ASD had goals related to self-regulation, potty training, eating, and sleeping. Although children were enrolled in other school- and center-based services, parents needed support related to everyday behaviors that occur in the home. When children reach preschool age, they often receive only school-based services, and goals must be related to education. Parents enrolled in this telehealth intervention identified toilet training, eating, and sleeping as goals; therefore, it is likely that families of children with ASD would benefit from occupational therapy services via telehealth that address home-based goals.
One of our primary findings was the significant increase in parent efficacy after the intervention. Previous studies have shown that various coaching interventions are effective in increasing parent efficacy (Dunn et al., 2012; Graham et al., 2013), which aligns with the current study’s findings. Occupation-Based Coaching allows caregivers to create their own strategies and provides the opportunity to plan with therapists when to implement such strategies in everyday routines. When parents create their own strategies to unique self-identified child goals, they are well-positioned to gain self-efficacy. Research has suggested that high levels of parent stress may attenuate child gains in intervention (Osborne, McHugh, Saunders, & Reed, 2008). Limited research, however, has investigated the extent to which parent efficacy affects intervention effects. It may be that occupational therapy services are particularly effective when boosting parent efficacy, not necessarily solely focused on decreasing parent stress. Future studies are needed to unravel the complex relationship between stress and efficacy among parents of children with ASD to determine a best practice approach to support families.
Limitations and Future Directions
Although we used parent-report methods, future researchers may capture the variability of child and parent behavior by using behavioral observation and ecological momentary assessment. Additionally, future studies may benefit from the use of a control group. A limitation of the current study was our small sample size; future research with larger samples can be used to examine the extent to which child and family characteristics influence intervention outcomes.
Implications for Occupational Therapy Practice
The results of this study have the following implications for occupational therapy practice:
Occupation-Based Coaching was shown to positively affect parent efficacy and children’s activity participation.
Occupation-Based Coaching was successfully delivered via telehealth, suggesting that occupational therapists may consider how telehealth can be used to provide services to underserved families.
As a result of the intervention, parents formulated and reached goals that largely included child adaptive behavior in home and community contexts. Occupational therapists may consider how home- and community-based goals align with parent needs and generalize across contexts.
Conclusion
Our findings showed that Occupation-Based Coaching via telehealth significantly increased child participation. Specifically, results reflect an increase in play frequency and skill development diversity. In other words, parents were more frequently engaging in child play activities (e.g., imaginary play, playing with toys), and they were trying more skill-based activities (e.g., painting, doing a puzzle) during everyday routines. These findings are particularly promising because previous research has suggested that families of children with ASD struggle with activity participation (Little et al., 2014). Decreased activity participation by families of children with ASD may be due to unpredictability of child behavior, environmental factors, and the need for a back-up plan (Bagby, Dickie, & Baranek, 2012; Schaaf, Toth-Cohen, Johnson, Outten, & Benevides, 2011). It may be that the intervention process of parents formulating their own strategies and drawing on their own resources better equips them for the unpredictable challenges during activity participation.
To increase child participation in everyday play and skill-development activities, services may be more effective when aimed at working with parents to develop strategies to promote children’s strengths and to offer opportunities for children’s practice in activities. By focusing on specific child skills (as happens in traditional therapy programs) as opposed to overall family participation, occupational therapists may be limiting the extent to which children are able to attend birthday parties, go to holiday events, or participate in music classes. However, when occupational therapists work with parents to practice their own strategies in the everyday occupations that may pose challenges, children may be able to participate more fully.
