Abstract
Family- and client-centered care values are important in guiding occupational therapy intervention. When enacting family-centered care values, occupational therapy practitioners effectively and compassionately listen to the concerns, address the needs, and support the hopes of clients and their families. Client-centered practitioners demonstrate respect for clients’ experience and knowledge, involve clients in decision making, and advocate with and for clients in addressing their needs (Law et al., 1998). Collaborative goal setting represents the desired outcomes of therapy and is central to both family- and client-centered care. Parents’ beliefs about their child’s need for intervention may influence their satisfaction with the outcomes of intervention. Thus, to negotiate collaborative goals and family- and client-centered outcomes, practitioners must strive to understand parents’ concerns about their children’s challenges and desired outcomes of occupational therapy intervention.
Kleinman (1987), a medical anthropologist, devised a framework he called explanatory models (EMs)—the meanings and beliefs that clients ascribe to health conditions, symptoms, preferred treatments, and desired outcomes—to conceptualize patients’ explanations of their health problems. Kleinman developed a set of open-ended questions that are widely used by health professionals to explore patients’ EMs. In client-centered care involving children, understanding parents’ EMs provides practitioners with practical knowledge of parents’ beliefs and may be used to identify measures and design interventions that focus on family- and client-centered goals for outcomes. EMs reflect parents’ concerns about their children’s challenges and how parents make sense of the relationships between their children’s challenges and performance of activities of daily life.
Several studies have considered parents’ perspectives or EMs regarding their children’s behaviors associated with sensory processing difficulties (Dunn, 1997). Cohn and Cermak (1998) argued that previous research on sensory integration intervention focused primarily on motor, sensory, and cognitive outcomes and urged researchers to consider the family perspective when researching intervention effectiveness. May-Benson and Koomar (2010) reviewed 27 sensory integration intervention effectiveness studies and concluded that sensory integration interventions may result in positive outcomes in sensorimotor skills, motor planning, social skills, behavior, and play participation. Yet, they noted that outcomes valued by families, such as their children’s perceived competence or social participation, are missing from the intervention effectiveness literature. A more thorough understanding of parents’ expectations for occupational therapy intervention using a sensory integration approach may support practitioners and parents in the collaborative goal-setting process essential to family- and client-centered care and guide intervention effectiveness research.
Studies have proposed links between sensory processing and social participation. Koenig and Rudney (2010) reviewed literature related to performance challenges of children and adolescents with sensory processing disorder (SPD). They noted that difficulties with processing and integrating sensory information related to both social competence and socialization difficulties. Children with difficulty processing and integrating sensory information had decreased quality and quantity of social participation with their peers. Similarly, Cosbey, Johnston, and Dunn (2010) found that children ages 6–9 yr with SPD reported a less diverse social network for social activities than their peers. Compared with typically developing peers who had more involvement with friends, the children with SPD more often played alone or with immediate family. Differences were demonstrated in types of activities and level of competence in social and school activities among children with SPD.
Moreover, in previous exploratory studies of parents’ perspectives regarding hopes and outcomes for their children with SPD, social participation was a main concern of parents (Cohn, 2001; Cohn, Miller, & Tickle-Degnen, 2000). In addition, parents’ desired and valued outcomes for their children included self-regulation and perceived competence. Parents reported that a better understanding of their children’s sensory processing would help them develop realistic expectations as they supported and advocated for their children in school and social settings. These findings, however, were based on small sample sizes and require further validation. We build on previous research by examining the EMs of a larger group of parents and present three EMs that reflect how parents describe their hopes, concerns, and expectations for the occupational performance of their children with SPD.
Method
Research Design
We conducted a qualitative study using secondary analysis of data collected from developmental–sensory history intake forms completed by parents about their children. The institutional review boards at the Spiral Foundation and Boston University approved the study.
Participants
Two hundred and seventy-five parents, seeking intervention for their children ages 4–11 yr at a private occupational therapy practice in the northeast United States that specializes in sensory integration intervention, completed developmental–sensory histories before their children received an initial comprehensive sensory integrative–based occupational therapy evaluation. We analyzed parents’ responses to three open-ended questions on the intake forms to identify their concerns and hopes for outcomes of occupational therapy for their children.
We collected data for this study over 9 yr 3 mo (July 2001 to October 2010) for a research project on sensory processing in children conducted at the Spiral Foundation, Watertown, MA. Parents of children referred for an initial sensory integration evaluation were recruited for participation in the original study. We obtained informed consent that specifically permitted use of the deidentified study data for a second analysis. The developmental–sensory histories were collected as part of the original study. We placed all data from the original study in a deidentified database.
As part of an initial comprehensive evaluation process using the Sensory Integration and Praxis Tests (Ayres, 2004), all participating children demonstrated various SPD, including sensory modulation, praxis, and sensory discrimination challenges. Children with diagnoses such as autism spectrum disorder, pervasive developmental disorder, and Tourette syndrome were removed from the sample; children with these conditions may have different social–emotional and behavioral needs from those without these conditions. We used this exclusion criterion to obtain a relatively homogenous subgroup of children. The characteristics of the children are described in Table 1.
Characteristics of Children (N = 275)
Note. ADHD = attention deficit hyperactivity disorder.
Data Collection
Intake forms were mailed to parents, generally 2 wk before the child’s initial evaluation. On the forms, parents reported age, gender, and race of the child; adoption or foster status; and diagnoses. Parents responded to open-ended questions designed to elicit their perspectives about their hopes for their child’s therapy. The three questions used for analysis in this study were (1) What concerns you most about your child? (2) What do you hope to gain from this evaluation or treatment? and (3) What particular skills would you like your child to achieve in the next 6 months?
Data Analysis
Content and comparative analyses were used to analyze parents’ responses to three questions on developmental–sensory histories intake forms (Charmaz, 2006; Elo & Kyngäs, 2008). First, parents’ responses were entered word for word into a database. On the basis of a preliminary review of the entire data set, an occupational therapy student identified initial codes for each question to preserve the parents’ exact words for their primary concerns. Two occupational therapists with pediatric and qualitative research experience and familiarity with social participation and sensory integration research literature, along with the occupational therapy student, reviewed the initial codes and compared the codes across the data set for common themes of meaning.
The research team identified four condensed, encompassing categorical codes that described parents’ concerns and hopes and developed specific definitions for each code. Consolidating initial codes to develop categorical codes involved comparing categorical codes with exemplar quotes for each category and ensuring that all team members agreed on categorization of the data. For examples of initial codes representing parents’ exact words and corresponding categorical codes, see Table 2. The four categorical codes were defined as follows:
Self-regulation is the ability to interpret experiences and adapt one’s emotions and behaviors in a socially acceptable manner.
Social participation is the child’s ability to interact with peers and make and sustain friendships.
Skill development is the development of motor skills for fine and gross activities.
Confidence is a child’s positive feelings of overall worth and competence.
Categorical Coding Process
Parents often noted concerns in multiple categories. We assigned initial codes to one of the four categories to determine frequency of response for each categorical code once they were defined. We used frequencies to examine patterns in the data and reviewed data to analyze patterns and relationships among the categorical codes.
Three parental EMs, based on combinations of the four categorical codes, were developed to describe how parents conceptualized and linked concerns and hopes about their children’s occupational performance. These models were then reviewed and modified for conceptual congruence by the entire research team. Further, to check for theoretical relevancy, the first author (Cohn) conducted a member check with a mother whose child had sensory processing and learning challenges, participated in this study, and was receiving occupational therapy at the member check time. The EMs were presented to this mother, who was particularly insightful, provided the authors with additional data, and confirmed that in her experience as a parent and through her interactions with other parents of children with SPD, the EMs captured what parents care about.
Findings and Interpretations
Primary Concerns and Hopes for Children
Parent responses were conceptualized as representing four primary concerns or hopes (self-regulation, skill development, social participation, and confidence) for their child’s intervention outcome. Among 275 parents, 199 (72%) identified self-regulation concerns or hopes for their child. A common concern for parents was their perception that their child was often overwhelmed by situations or experiences and consequently became extremely and disproportionally upset. One parent described her child’s inability to regulate emotions and behaviors when she wrote, “She can easily get overtired and overwhelmed. She then becomes whiny and [has] tantrums.” Another parent expressed, “We cannot pinpoint why she gets into these terrible moods when situations or things that are uncomfortable for her suddenly make her beyond upset.” Both parents described their children’s reactivity and inability to regulate affect and behaviors.
Parents also identified concerns about their child’s difficulty in social situations and lack of a connection with peers. Among the 275 parents, 112 parents (41%) identified social participation as a concern or hope for their child. Parents worried about their child being included and belonging or “fitting in with other children.” For example, one parent wrote, “[She] seems to be on a different plane than other children and has trouble finding a common bond with them.” Another parent hoped her son could “have kids like him and call him a friend.” Parents hoped that the intervention would help their child to better engage with others in building and maintaining friendships.
One hundred eleven parents (40%) described their child’s challenges with fine and gross motor activities and related skill development. Parents were concerned about their child’s ability to complete motor tasks at home and in the community, such as throwing and catching a ball, riding a bicycle, running, or tying their shoes. One parent of a 6-yr-old boy related, “He has a hard time playing sports, climbing monkey bars, and riding a bike.” Parents were also concerned about their child’s ability to complete motor tasks in the classroom. For example, a parent explained, “He seems to have a lot of difficulty with handwriting activities, particularly when asked to use a specific pencil grip.”
One hundred six parents (39%) expressed concern about their child’s confidence. One parent expressed that her child had “feelings of not being good at anything.” Another parent worried about her 7-yr-old son’s confidence: “His self-esteem dropped a lot in school this year.” A parent of an 8-yr-old boy linked confidence with skill development, reporting that “he is not confident in his abilities physically.” When describing desired particular skills, parents identified the effect that skill had on their child’s self-esteem and confidence, illustrating the salience of this concern. Further frequency analyses revealed that self-regulation often co-occurred with other categorical codes, suggesting that self-regulation was an overarching concern for the majority of parents of children with SPD in this data set. Parents who identified self-regulation as a concern also identified social participation (80%), confidence (68%), and skill development (64%) as concerns.
Parents’ Explanatory Models for Children’s Occupational Performance Challenges
The primary concerns—self-regulation, social participation, skill development, and confidence—are consistent with Cohn et al.’s (2000) and Cohn’s (2001) studies of smaller samples of a similar population. This study provides an opportunity for a secondary level of analysis within and between the categories to examine parents’ EMs related to their concerns and hopes for their children.
Parents explained their concerns by linking their children’s self-regulation difficulties to social participation, skill development, and confidence. One parent of a 5-yr-old boy wrote,
[I would like to see] improved fine/gross motor skills and an ability to write clearly [and] handle self with other children better. He has become much less self-confident over time and is frustrated with self. We are concerned his issues will harm him socially and academically and personally.
Another parent wrote that her child
lacks self-confidence where her social interactions are concerned. She is also clumsy, tires easily, and is easily frustrated. I would like to see her be able to control herself by calming herself. I would like to see her confident and happy and in control of herself.
One parent related, “My son presents aggressive behavior when frustrated, his issues with self-esteem when he thinks he did something wrong or in learning new things, his impulsiveness and his confidence in his gross motor development.” Initially it appeared that these parents talked about their concerns in a stream-of-conscious manner. On closer examination, we identified parents’ beliefs that self-regulation affects other behaviors and occupational performance. Figure 1A presents a diagram of this General Self-Regulation EM.
Explanatory models representing how parents make sense of relationships among children’s behavior and occupational performance.
Some parents were specific in their description of the ways in which self-regulation difficulties affected occupational performance. The Frustration Tolerance EM describes parents’ explanations of how their child’s poor self-regulation (manifested as decreased frustration tolerance with fine and gross motor skill challenges) contributed to a lack of self-confidence. One parent described the frustration her child felt, stating,
I wish he would not be so frustrated when he doesn’t catch on right away with certain motor tasks (writing, drawing). He has difficulty carrying out some motor tasks, especially novel tasks, and resistance to letting anyone show him how to do new things, which makes it tough to learn new things.
Although parents did not use the term self-regulation, they described frustration and task persistence, terms used by Deater-Deckard, Petrill, and Thompson (2007) as equivalent to self-regulation. Although on the intake forms parents were specifically asked to identify skills they would like their children to achieve, they identified other behaviors they believed were related to their child’s skill development. One parent stated,
[I would like him] to feel good about himself, be able to get through the day with less stress and more enjoyment, specifically to learn to catch a ball and ride a bike. But he won’t try new things that he thinks he may fail at. He calls his body stupid and doesn’t do cool things like the other boys. He also has a temper.
The Frustration Tolerance EM is shown in Figure 1B.
The Impulse Control EM describes parents’ explanations regarding how their child’s poor self-regulation (manifested as difficulty controlling impulses) in social situations resulted in a lack of confidence. One parent of a 5-yr-old boy expressed how self-regulation affected his social participation: “He seems to easily get out of control and cannot stop himself until after a meltdown. We would like him to be able to control his behavior and be able to better play with and make friends.” For parents who explained their child’s behavior this way, lack of impulse control results in difficulty in making friends, which can lead to poor self-confidence. Another parent wrote, “His impulsive actions are seen as weird behaviors. Other kids seem to notice, and we don’t want this to impact his self-esteem.” The Impulse Control EM is shown in Figure 1C.
As seen throughout the data, parents’ descriptions of desired outcomes further demonstrate the links among their concerns. One parent eloquently described her hope by expressing, “I would like him to have peace of mind, confidence in himself, and an appreciation of his strengths and weaknesses. We would like him to like himself better.” Another parent wrote, “I would like him to be able to keep his hands to himself and to control his impulses so that he can have better communication with his peers.” These quotes illustrate parents’ hopes that occupational therapy intervention will help their children develop self-understanding and frustration tolerance or impulse control to self-regulate their behavior in socially acceptable ways.
Embedded in these EMs, parents described their concerns for their child’s future and potential. Even without questions that directly elicited responses about the future, parents anticipated the long-term consequences of their child’s self-regulatory challenges. Parents identified their child’s friendships as a future problem. One parent noted, “We are afraid that his behaviors will interfere with normal development of friendships.” Parents also described fears about a decline in their child’s confidence. They noted concerns with their child’s ultimate happiness and life satisfaction, wanting their child to reach his or her full potential. One parent expressed the following concern: “That he will not know how to interact with peers. That he’s so inconsistent that I am afraid he will get lost in school and in real life.” Another parent stated, “We want to give her the skills to be successful in life and give her abilities to cope appropriately with stressors in her environment.” Parents hoped intervention would address immediate and long-term outcomes for their children’s future.
Finally, the parent who provided member check feedback reminded us that “parents know their children best” and that “sensory processing is all encompassing; it is not discrete from other behaviors, and it’s all about regulation.” She explained that her daughter had low frustration tolerance and was having tantrums at least 3 times a day before receiving occupational therapy. She brought her child to occupational therapy to “be able to get through a day like other kids.” She hypothesized that parents “care more about their child’s self-regulation than sensory processing.”
Discussion
In this data set, self-regulation was a prominent and overarching concern of parents of children receiving occupational therapy. Our finding is consistent with the writings of A. Jean Ayres (1972), an occupational therapist and neuroscientist who linked self-regulation and sensory processing. Ayres alluded to self-regulation in the concept of adaptive responses, described as “one’s ability to adjust actions based on environmental demands” (p. 8).
Dunn (1997) explicitly linked self-regulation with sensory processing in describing how sensory processing abilities affect the daily lives of children. According to Dunn, sensory processing reflects how the brain regulates sensory input for response. Dunn identified four self-regulation strategies or patterns used to process sensory information: sensory seeking, sensory avoiding, sensory sensitive, and low registration. Miller, Anzalone, Lane, Cermak, and Osten (2007) included self-regulation in their proposed nosology for SPD subgroups, which “encompass immense individual difficulties in detecting, regulating, interpreting, and responding to sensory input” (p. 136). Most recently, Lane, Lynn, and Reynolds (2010) defined sensory modulation as an “individual’s ability to regulate reactionary responses in an adaptive way” (p. CE1). This occupational therapy perspective on self-regulation is consistent with self-regulation models described in the psychology and education literature.
Similar social, behavioral, and psychological characteristics are seen in children with challenges in processing and integrating sensory information and children with attention deficit hyperactivity disorder (ADHD; James, Miller, Schaaf, Nielsen, & Schoen, 2011). Barkley’s (2004) proposed theoretical model of ADHD, in which poor behavioral inhibition is viewed as the central deficit, suggests that four executive functions—working memory; self-regulation of affect, motivation, and arousal; internalization of speech and reconstitution; and problem solving—support behavioral inhibition necessary for effective performance. Barkley noted that evidence suggests motor control deficits in children with ADHD and argued that the four functions working together permit goal-directed action and task persistence. Barkley’s claims that behavioral inhibition is a core deficit related to self-regulation and motor control are congruent with the EMs in which parents describe their concerns about self-regulation and related occupational performance.
In the field of education, Zimmerman and Riesemberg (1997) argued that skilled writing, including motor coordination skills, is highly dependent on self-regulation. This relationship is congruent with the parents’ EM that links self-regulation with fine and gross motor skill development. These understandings of self-regulation from other fields can inform the practice of occupational therapy and vice versa. Self-regulated adaptive behaviors and their influence on skilled performance are behaviors parents in this study hoped their children would develop in occupational therapy.
As occupational therapy practitioners further explicate the relationship among sensory processing, self-regulation, and adaptive behavior, they can make a unique contribution to understanding why children have difficulty with self-regulation. Parents’ nuanced EMs of self-regulation and the effect on occupational performance may suggest different subtypes of regulatory challenges. Although the relationship between motor challenges and self-confidence is well established, the relationship between self-regulation and sensory processing has not been well described (Willoughby, Polatajko, & Wilson, 1995). Perhaps correlations exist among these regulatory subtypes and the various subtypes of SPD described in the occupational therapy literature; EM variations may be associated with child characteristics or type of SPD. A continued exploration of the relationship between self-regulation and sensory processing could contribute to understanding of SPD.
Implications for Occupational Therapy Practice
Occupational therapy is based on the philosophical principle that understanding clients’ concerns is essential to family- and client-centered practice. Findings from this study lead us to examine how well measures used in occupational therapy enable practitioners to understand parents’ and children’s hopes for intervention:
Guidance regarding assessments that might capture concerns of parents and children with regulatory challenges is found in numerous measures, such as the Sensory Processing Measure: Home Form or School Form (Parham, Ecker, Miller Kuhaneck, Henry, & Glennon, 2007) or the Sensory Profile (Dunn, 1999), which help parents and practitioners better understand how sensory processing affects children’s participation in daily life.
The Perceived Efficacy and Goal Setting Scale (Missiuna, Pollock, & Law, 2004) and Child Occupational Self-Assessment (Keller, Kafkes, Basu, Federico, & Kielhofner, 2005) can be used to better understand the effect of regulatory challenges on children’s perceived competence in desired activities and to create collaborative goals with children.
It is important to use assessments that document changes in sensory processing as well as social participation, motor skills, and confidence.
Findings highlight the importance of teaching children self-regulation strategies. Interventions emphasizing metacognitive strategies may be provided as a complement to sensory integration interventions that focus on underlying impairments. Several interventions to self-monitor and self-evaluate occupational performance have been developed by occupational therapists:
The Alert Program, “How Does Your Engine Run,” uses cognitive and sensory strategies to teach children to monitor and adapt their level of alertness to appropriately match the situation to regulate their behavior (Williams & Shellenberger, 1996).
The Cognitive Orientation to Occupation Performance (CO–OP) is a cognitive-based, performance-based intervention that teaches children to use strategies that support skill acquisition through a process of guided discovery (Polatajko & Mandrich, 2004).
Hahn-Markowitz, Manor, and Maeir (2011) developed the Cog-Fun intervention to teach children with ADHD cognitive strategies to enable occupational performance.
These interventions differ from traditional sensory integration intervention. They improve function by managing the sensory system needs rather than changing the sensory environment or children’s sensory processing. Several other self-regulation strategies, including self-monitoring, self-monitoring plus reinforcement, self-management, and self-reinforcement interventions have been effective for older elementary school and middle school children with ADHD (Reid, Trout, & Schartz, 2005).
The need to consider the focus of various interventions is indicated. In two systematic reviews of occupational therapy interventions for children and adolescents with SPD, May-Benson and Koomar (2010) and Polatajko and Cantin (2010) noted that both impairment- and performance-oriented interventions hold promise. The parents’ concerns reported in our study underscore the importance of the need for explicating the relationship between sensory and motor impairments and occupational performance in intervention.
Limitations and Future Research
This study has several limitations. The EMs described do not specify whether the parents viewed particular concerns as moderating or mediating factors in their explanations. For example, the role of confidence (perceived self-efficacy) may differ depending on a child’s particular challenges with self-regulation. Researchers who explicitly ask parents to describe the perceived relationships and statistically examine hypothesized links in causality among parents' concerns about their children’s performance are needed to further specify and validate the proposed EMs.
In addition, further research is needed to study the effectiveness of self-regulation strategies for children with SPD and the effect such interventions have on outcomes such as motor skills, confidence, and social participation. Responses reported in this article may not be representative of all parents of children with SPD, and our interpretation is only one possible conceptualization of these data.
Finally, the population in this study is relatively homogenous. Ninety-three percent of the participants were White and came from middle to upper class backgrounds, which may limit generalizability to clients from differing backgrounds. Eliciting parents’ concerns and hopes for their children with SPD should be researched across diverse populations for more generalizable understandings.
Conclusion
Parents’ perspectives are extremely important when understanding and developing family- and client-centered occupational therapy. Parents bring their children to occupational therapy hoping their children will improve their self-regulation, skills, confidence, and social participation. It is crucial for occupational therapy practitioners to use measures and provide interventions that address parents’ and children’s concerns.
Footnotes
Acknowledgments
We gratefully acknowledge the support of parents who agreed to record reviews and to Alison Teasdale, senior research assistant at the Spiral Foundation. This article was written in partial fulfillment of the thesis requirement for Jamie Schub’s master’s degree, Sargent College, Boston University. We have no conflicts of interest to report.