Scales, Lucy H. PT, MS, PCS; McEwen, Irene R. PT, PhD, FAPTA; Murray, Cynthia PhD
In 1986, the United States Congress passed Public Law (PL) 99–457, the Education of the Handicapped Act amendments. Part H of the law gave states the opportunity to receive federal support to develop a statewide system of early intervention services for eligible children from birth through two years.1 The law emphasized a family-centered approach to service delivery, with services and supports provided not only for eligible infants and toddlers but for their families if needed to help them to meet the developmental needs of their children. This emphasis has continued through reauthorizations of the law, which is now known as the Individuals with Disabilities Education Improvement Act.2
In a family-centered approach, services are driven by what the family sees as important. Professionals are not responsible for prescribing services for the family; rather, families identify outcomes for the child and family, and service providers are facilitators and providers of information for the family.3 Dunst4 described family-centered services as having two components: relational and participatory. Service providers with good relational skills have such attributes as being active listeners, empathic, nonjudgmental, and compassionate. Service providers can have these attributes, however, and not provide family-centered care. Family-centered service providers also actively involve parents in decisions and choices, promote family–professional collaboration, and provide opportunities for families to achieve the outcomes that they desire.4
The helping style of the interventionist can affect the degree of control that families feel they have over their early intervention services.5 In a family-centered approach, the way services are delivered should promote family strengths and resources, rather than looking only at intervention as a means to ‘fix‘ the child.6 Services that help families to help their children are believed to be key to children’s development because children spend most of their time with their families, and the more knowledgeable families are about child development and activities for promoting the child’s development, the greater the effect of early intervention is believed to be.3 For this reason, intervention that takes place periodically with service providers is thought to be less likely to be effective than activities that families incorporate into daily routines.7 Another proposed benefit of parental participation is that as a family is better able to promote their children’s development, their confidence in parenting their child with a disability increases, and stress decreases.7
Although the literature strongly supports the movement toward services that provide a family with the supports and resources that the family identifies as being important for helping them to promote their child’s development, research suggests that families also believe that frequent and direct physical therapy is beneficial for their children’s development.8,9 The research reports, however, did not describe the type of services the families received, such as watching a therapist working directly with the child or working with a “hands-off” therapist to learn to promote their own children’s development. We also found no research reports comparing the effectiveness of direct intervention by a physical therapist and teaching parents how to promote their children’s development. Research with children with rheumatoid arthritis has shown that if parents do not perceive a home-intervention program as beneficial, they will not follow through.10 If parents believe that “hands-on,” direct therapy is more beneficial, they also may not follow through with strategies designed to be incorporated into daily interactions and routines with their children, and they may request more physical therapy services if they believe direct intervention by a therapist is more effective than their own interactions with the child. Because researchers have not compared parents’ perceptions of the benefits of direct intervention by physical therapists with parent instruction, this study addressed the following research questions:
1. Do parents in early intervention programs perceive direct intervention by a physical therapist to be more beneficial than parent instruction?
2. If parents perceive one intervention method to be more beneficial than the other, do they recommend more or fewer home visits by a physical therapist?
Parents were recruited from among families receiving early intervention services in the state of Oklahoma. The first author (L.S.) explained the study during a meeting of the 18 physical therapists who were employed in the statewide early intervention program at the time. After the meeting, she sent a letter to the therapists, asking for their assistance in randomly selecting families to participate in the study. The only criterion for participation was that the child had a 25% or greater delay in gross motor skills and currently was participating in the early intervention program. The physical therapists were asked to list all the children on their caseloads alphabetically and to count down three names starting with the first name and to continue to do so until five names were identified. The therapists were then asked to contact each of the five families and ask them if they would participate in the study, which would involve watching four short videotapes and completing a questionnaire. Families were told that they would receive $10.00 for participating. If a family member declined to participate, therapists were asked to count down three more names and contact additional families, if necessary. Therapists then sent us the names, addresses, and telephone numbers of families who agreed to participate. Six physical therapists provided the names of the 23 participants in the study. Each participant was contacted by telephone, and a meeting time was scheduled. Twenty-two mothers and one father participated in the study. The demographic characteristics of the participants and their children are provided in Tables 1 and 2. The early intervention program generally used a transdisciplinary service delivery model, but the model and specific early intervention services of each child and family were not identified. The study was approved by the institutional review board of the University of Oklahoma Health Sciences Center and by the early intervention program.
Four videotapes were made of two mothers and their children who were receiving early intervention services. Both children were approximately two years old. The first set of videotapes, referred to as the “walking tapes,” showed a child working on the goals of pulling up on a sofa, cruising along the sofa, and walking with a push toy. The child was a girl with relatively mild motor delay. One videotape showed a therapist working with her hands on the child to try to accomplish the goals while the parent sat nearby and observed. In the second walking videotape, the parent was shown helping the child to accomplish the goals while the therapist sat close by and instructed her how to help the child.
The second set of videotapes, referred to as the “sitting tapes,” showed a child working on the goals of sitting, getting onto hands and knees, and standing. The child in these videotapes was a boy with severe motor delays. In one of the sitting tapes, the therapist was shown with her hands on the child working toward the goals while the parent sat close by. In the other sitting tape, the parent was shown with her hands on the child working on the goals while the therapist was close by showing her how to help the child. A younger sibling was playing nearby.
We selected walking and sitting as the goals because in our experience they are the most frequent outcomes that parents of children with motor delays identify for their individualized family service plans. Each set of videotapes was as similar as we could make them, except for the intervention approach. One female physical therapist, who had worked with both children for several months, for example, was shown in all four videotapes. The same children and their mothers were shown in each set of videotapes (one parent–child pair for the walking videotapes and another parent–child pair for the sitting videotapes); the home setting, the play activities, and the goals were identical for each set of tapes; and the children were cooperative in all of the tapes. The therapist and the mothers appeared to be the same ethnicity, and one mother appeared to be a few years older than the other.
Each of the four of the videotapes lasted approximately three minutes. Although the videotapes were shown without sound, the physical therapist clearly was directly intervening with the child in one instance (she interacted with the child while the mother sat beside them watching) and instructing the mother in the other instance (the mother interacted with the child with the therapist gesturing and sitting beside the mother-child duo).
A 12-item home-visit rating form was developed to obtain the parents’ perceptions of the interventions shown in each set of videotapes. Parents were asked to select one of a set of videotapes (direct intervention or parental instruction) in response to each question, such as “which home visit videotape was more fun for the child.” Other questions addressed other aspects of intervention, such as helpfulness to the parent, amount of information the parent learned, and benefits of the method for their child and themselves (Table 3). Questions were based on early intervention literature and the authors’ experiences.
A pilot study was conducted with three parents from a local early intervention unit to assess the clarity of the questions on the home-visit rating form and the demographic form. The parents who participated in the pilot study did not participate in the larger study. Some of the wording on the home-visit rating form was modified in response to their feedback.
The first author went to each participant’s home with a portable television and VCR, the videotapes, an early intervention program release form, an informed consent form, and the questionnaire with the home-visit rating form and the demographic information form. She did not know any of the families or their children. After explaining the study and obtaining the signed consent forms, she obtained demographic information.
Participants were then asked to read the questions on the home-visit rating form and the researcher read a script explaining the procedure. Participants were told that the purpose of the study was to learn about their opinions of different approaches to providing physical therapy for children in early intervention. Each of the four videotapes was color coded. To ensure that the participants saw the videotapes in random order, they were asked to pick one of two colors for the sitting or standing videotapes and then pick between two other colors to start with the direct or instructional videotapes. After participants had seen the two sitting or two standing videotapes, they completed the home-visit rating form. The process was repeated for the remaining two videotapes. Data collection took approximately 45 to 60 minutes, after which each participant received $10.00.
Data from the demographic information form and the home-visit rating form were analyzed. Parents’ responses to each set of videotapes were compared to see which of the two intervention approaches they perceived as being the most beneficial.
A chi-square test was used to analyze the data obtained from the home-visit rating form, which was used to compare the two intervention methods. The chi-square test allowed us to analyze all of the participants’ responses for each of the 12 questions on the rating form. The sitting videotapes and the walking videotapes were analyzed separately.
We used a two-tailed paired t test to see whether parents’ responses to the direct and instructional methods differed. Unlike the chi-square analysis, the paired t test analyzed the number of questions in which participants perceived the direct method as more beneficial compared to the number of questions in which they perceived the instruction as being more beneficial. Again, the sitting and walking videotapes were analyzed separately. We used a Fisher’s exact test to see if parent’s responses differed by education level (some college or not) and by location (urban/suburban or rural). The alpha level for all analyses was 0.05.
Table 4 shows the frequencies, percentages, and p-values for the parents’ responses to each question about the walking videotapes. For eight of the 12 questions, the parents selected the parent instruction approach as being more beneficial than the direct approach. These eight questions related to the helpfulness of the technique, the amount of information learned, the amount of fun the parent and child in the videotape appeared to have, the benefits to the parent in the videotape, the technique preferred to reach goals faster, and the benefit to the parent and child. For one of the 12 questions, they selected the direct intervention approach as being more beneficial. That question related to parental stress. Seventeen (74%) of the parents thought that the direct treatment approach was less stressful for the parent in the videotape than the instructional approach. The parents’ ratings did not differ for the questions related to the amount of stress for the child, benefits to the child, and frequency of visits needed to accomplish the goals.
The number of questions for which each participant rated the direct approach as more beneficial was compared with the number of questions for which each participant rated the instructional approach was rated as more beneficial. Overall, the participants rated the instructional approach as being more beneficial, and the majority of responses of 17 of 23 of the participants indicating a greater benefit from the instructional approach.
The results for the sitting videotapes were similar to the results for the standing videotapes. The data for each question are in Table 5. The parents perceived a difference in benefit between the direct and instructional approaches for eight of the 12 questions. For seven of the 12 questions, they rated the instructional approach as more beneficial; for one question they rated the direct approach as more beneficial. As with the walking videotapes, participants selected the instructional approach as being more helpful to the parent, the approach in which the parent learned more, the most beneficial to the parent in the video, the most beneficial to the participant’s own child, and most beneficial to the participant. Unlike the ratings for the walking video, the parents did not rate one approach as being more fun for the child or the parent in the video, but did rate the instructional approach as requiring less frequent physical therapist visits to accomplish the goal. As with the walking video, the parents rated the direct approach as being less stressful for the parent than the instructional approach.
Comparing the number of questions for which the participants rated each approach as beneficial, 16 of the 23 participants indicated that the instructional technique was more beneficial compared to the direct technique. Three of the participants’ responses were split, with the instructional approach rated as more beneficial for six questions and the direct approach rated as more beneficial for six questions. Overall, they rated the instructional approach as being more beneficial (t22 = 3.03, p = 0.006).
Consistency Between Walking and Sitting Videotapes
We compared the participants’ responses to the walking and sitting videotapes to see if their perception of the most beneficial approach was consistent. For each participant, the number of questions in which the instructional approach was perceived as more beneficial after watching the walking videotapes was compared with the number of questions in which the instructional approach was perceived as beneficial during the sitting videotapes. Their responses did not differ (t22 = 1.20, p = 0.243), indicating a consistent perceived benefit for the instructional approach in the sitting and walking videotapes.
Demographic Characteristics and Rating of Benefit
For the walking videotapes, participants with a high school diploma or less did not rate the benefit of the two approaches differently than participants with at least some college or technical school experience (p = 0.341). Participants living in rural and urban/suburban areas also did not rate the benefit of the two approaches differently (p = 1.00). For the sitting videotapes, three of the participants’ perceptions of the benefits were split between the two approaches, which resulted in a smaller sample size that did not allow comparison by place of residence or educational level. Because of the small sample size we also could not test for differences between ratings of parents whose children had different levels of impairment in motor skills (minimal, moderate, and severe) for either the walking or sitting videotapes, or compare perceptions of those who did and did not work outside the home.
The results of this study are inconsistent with 1990s research that found parents perceived direct intervention by a therapist to be more beneficial than other intervention approaches.9,11 On the basis of this research and our own experiences, we were surprised that the participants in this study rated the parent instruction approach as having greater overall benefit than direct intervention by a physical therapist. The results are consistent, however, with more recent literature that supports active involvement of families in interventions within everyday contexts to help them achieve the outcomes that they desire for their children.4
In contrast to earlier research that found that watching therapists treat their children was helpful to mothers,12 participants in this study identified the parental instruction approach as more helpful and beneficial and thought it provided parents in the videotapes with more opportunity to learn to help their children than the direct approach. They also identified parental instruction as the approach that would be most beneficial for themselves and their children. Upshur11 found that parents do not want services directed to them, such as using printed handouts, but rather to them and their child, which is the case in the parental instruction approach shown in the videotapes. This study takes these findings one step further by investigating if parents believed that watching a therapist provide direct intervention for their child would be more beneficial than having the therapist show them how to promote their child’s development, as in the parental instruction approach. Again, the majority of the participants preferred the therapist showing the parent how to assist the child during a play activity rather than the therapist doing “hands-on” intervention while the parent observed. Research to compare the amount of information parents learn by watching a therapist work with the child and the amount of information learned if the parent helps the child would be informative. Studies also are needed to see what effect having a parent promote a child’s development while the therapist assists has on motor goal attainment.
The videotapes used for this study showed one activity and setting: playing in the living room of the families’ homes. Chiarello and Palisano also used play activities in their study as the context for mothers to enhance their children’s motor development and, as with our study, the mothers viewed the intervention as positive.13 The research and experiences of Dunst and his colleagues14,15 support embedding strategies to promote children’s development into play and a variety of other activities in which families choose to participate and that engage children in learning. Helping parents to identify learning opportunities and support and guide their children’s learning, however, are not easy tasks.14 For this reason, early intervention programs probably would benefit from professional development efforts designed to help interventionists acquire the skills necessary to support families to effectively promote their children’s development as they participate in a variety of activity settings.16
Another consideration is that effectiveness of intervention can be lessened if families are overwhelmed by stress. Families of children with disabilities have many demands on their time, finances, and patience, which can compound stress levels.7 The literature suggests that parents who feel that an intervention program is a burden, too time demanding, not effective, and not meaningful to them will not follow through with home activities.17 A therapist with the best intentions will be ineffective if interventions cause too much family stress. In our study, the majority of participants perceived the parental instruction as the more beneficial treatment approach, but the direct treatment approach was identified as being less stressful for the families shown in the videotapes. The literature raises the question that in our attempt to teach and involve families, are we causing them more stress when they are already overburdened by other concerns?17 Although the participants in this study perceived the parental instruction approach as more beneficial than the direct treatment approach for the parents shown in the videotapes, we do not know if they see the stress involved as being too great to actually use this approach. The key will be to find ways to teach families to play and care for their children, while promoting their development and participation, with the least amount of stress.
It was important in this study to see whether parents’ choice of the most beneficial intervention approach in the first set of videotapes was consistent with their choice of the most beneficial approach in the second set of videotapes. Inconsistencies could have indicated that parents’ responses were influenced by differences in the situation portrayed in each videotape. Differences in the performance of the child, physical therapists, or parent in each set of videotapes, for example, could have influenced participants’ perceptions. Signs of stress or pleasure, such as crying, grimacing, smiling, or laughing, also could have altered perceptions if one videotape was different from the other. Responses, however, were consistent, except that the participants thought that the direct treatment approach was less stressful to the child and also could be more fun for the child in the sitting videotapes compared to the walking videotapes. This may have been influenced by the presence of a sibling in the sitting videotapes. Participants may have thought that when the therapist used a direct intervention approach, the mother could attend to both the child with a disability and the sibling. Again, this may relate to stress and the difficulties of trying to balance the demands of having a child with a disability and siblings, which raises an important point. It may be that the service delivery model that the family chooses depends on the demands in their lives at the time. The fact that more than half of the participants did not work outside the home also may have influenced their responses. A family with more than one child or a working parent may prefer to use a direct treatment approach, in which a therapist models the activity with the child and the parent observes. This would allow the parent to take care of other demands more freely. Again, an open discussion with the family to explore what they need and desire when services are implemented is important and may reduce stress and improve a family’s ability to provide a supportive environment for their child’s development.
Finding more services has been identified as a source of stress for some families in early intervention programs. Studies have found that parents spend much time and energy trying to find more and more services for their children with disabilities, and some families may equate more frequent services with better services.9 This study attempted to see whether families would recommend an increase in frequency of intervention with either the direct or parental instruction approach to service delivery. The majority of the participants believed that the parental instruction approach would require less frequent visits by the physical therapist to accomplish the goals for the child in the videotapes than the direct intervention approach. They also believed that the parental instruction approach would help the family and child in the videotapes to reach their goals faster.
We attempted to identify a relationship between demographic characteristics of the participants and their perceptions of the direct or instructional technique as more beneficial. This was difficult to do with the small sample size, but the comparisons we could make with the walking videotapes showed no differences in the intervention approach chosen as most beneficial by either educational level or place of residence. We also attempted to see if the parents’ rating of their children’s motor skills was related to the type of service delivery they perceived as most beneficial. One study18 found that parents of children with more severe disabilities had better follow-through with home programs than parents of children with minimal or moderate disabilities. We would have liked to see if a relationship existed between the children’s severity of disability and the parents’ service delivery preferences but, unfortunately, our sample size was too small.
This study has only touched on the topic of perceived effectiveness of service delivery. Much more research is needed to explore ways that can prepare physical therapists to collaboratively work with families to help them to promote their children’s development. Paramount to the concept of effective services for families and children in early intervention is exploring with the family how best to implement and teach intervention activities. Because families are not alike, service delivery may look different from family to family if physical therapists provide services that best help families to meet the outcomes on their individualized family service plans. One most effective service delivery model probably does not exist.
The authors thank the following physical therapists for their help with this study: Lenda Barker, Sandy Biley, Cari Curtis, Rachel Jones, Tina McDermid, and Angie Valdez.
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