Comparison of Parent Perceptions of Two Models of Intervention Service Delivery for Children with Neuromotor Delays and Disabilities.Beth McManus, PT, MPH, ScD, University of Madison-Wisconsin BM McManus thanks the Robert Wood Johnson Health and Society Scholars Program for its financial support. The data collection and analyses for this project were funded by a Eunice Shishmanian fellowship awarded to Dr. McManus while she was a graduate student at Boston University School of Public Health. The authors wish to express sincere thanks to the families and EI practitioners who dedicated their time to participate in this study. AbstractIntroduction Research Questions Methodology Results Discussion References
Abstract
The Individuals with Disabilities Education Act (IDEA), PL 99-457, mandates that states provide Early Intervention services for infants and toddlers with or at risk for developmental disabilities. Reauthorization of the legislation over the last two decades reflects a tremendous evolution of service delivery for children with developmental delays and disabilities. Current policy calls for EI service delivery to be family-centered, transdisciplinary, and occur within a child's natural environment. We describe these constructs below. Family-centered care acknowledges the pivotal and constant role of family in a child's life. It dictates that service delivery stem from an equitable partnership between families and EI staff, be cognizant of various coping and parenting strategies, and acknowledge the inseparable nature of family and child function (Rosenbaum, King, Law, King & Evans, 2000; Law, Hanna, King, Hurley, King, Kertoy, & Rosenbaum, 2003). Research supports the role of family-centered care in reducing parental stress and improving parent satisfaction and child outcomes. Critical factors to promotion of family-centered care include parental involvement, a supportive relationship with EI provider, parent perception and understanding of family-centered care, and its continuity across multiple locations (Rosenbaum, et al., 2000). Transdisciplinary care integrates evaluations and intervention strategies that are not discipline-specific. In this model, pediatric therapists could act as primary interventionists, service coordinators, or consultants to families and staff about atypical motor development, positioning, or exercise programs. This role release serves to encourage professional collaboration and shared problem solving and to streamline communication (Rosen, Miller, Pit-ten, Bicchieri, Gordon, & Daniele, 1998; Sandall, 1997). Natural environments include the various locations where children learn and grow; community places where children play; and sites where families conduct their daily routines. Incorporation of natural environments into service delivery promotes a sense of belonging for families within a community, recognizes children's strengths within daily routines, and fosters critical peer modeling and socialization (Chiarello, Shledon, Rapport, Barnett, Cicirello, & Kennedy, 2001). Compared to typically developing peers, children with disabilities participate in fewer leisure and social activities and more passive home based therapy. Community participation for children with disabilities is associated with improved cognitive, language, and motor skills (King, Law, King, Rosenbaum, Kertoy, & Young, 2003). Successful integration for children with disabilities necessitates recognition of children's and families' strengths and implementation of strategies at the community level to foster positive attitudes and collaborative relationships (King, Tucker, Baldwin, Lowry, Laporta, & Martens, 2002). While there is a growing literature (Duman & Francesconi, 2001; Hutzler, Bergman, & Szeinberg, 1998; Takken, van der net, Kuis, & Helders, 2003) suggesting that aquatic therapy is associated with improvements in motor function, there is a paucity of literature related to the benefits of aquatic therapy for parents of young children with disabilities. Perhaps attributes of an aquatic therapy group — community integration, engaging in an activity that typically developing children routinely participate, meeting other parents and children — might be particularly beneficial for parents of children with developmental difficulties.
The purpose of this study is to investigate the effect of aquatic therapy as an adjunct to traditional EI services to determine 1) parent satisfaction with EI services relative to the domains of family-centered care, transdisciplinary care, natural environments, and children's functional mobility. This study could contribute to knowledge and practice of EI therapists as well as the evidence supporting service delivery models for EI programs. We hypothesize that an aquatic therapy program, with its dual role of facilitating peer socialization and motor development within a community environment will be associated with increased parent satisfaction with domains of EI service delivery to a greater extent than EI home visits alone.
Recruitment and Study Population Study participants were recruited from families enrolled in an EI program that serves approximately 200 families from 11 communities in northeastern Massachusetts. Participants were recruited from January 1 through January 31, 2004. Criteria for eligibility included that 1) the child was receiving services through EI, 2) child was not in protective custody, and 3) child completed at least two EI team assessments prior to May 1, 2004. At the time of recruitment, fifteen families were enrolled in the aquatic therapy (AT). Of those, 100% agreed to participate and constituted the experimental group. Sixty families were randomly selected from the EI program's client database. These families received a letter, which briefly described the study and requested their participation. Forty-eight (80%) of the families returned the letter and 100% of these families provided informed consent to be in the study, agreeing to complete a written survey and allow a one-time chart review of information germane to the child's socio-demographic characteristics and developmental status. Of the forty-eight, three were missing data and six were not eligible to participate. The final analysis included a control group of thirty-nine families. All participants completed a written survey. The Boston University Institutional Review Board approved this study. Child and Family Characteristics Parent Perceptions Data Analysis
Demographics Descriptive statistics for study participants are presented in Table 1. The children who participated in this study were overwhelmingly White, Non-Hispanic (92.6%), a majority were from non-poor families (79.6%), and 53.7% were male. There were no statistically significant differences between the groups with regard to these variables and these data match demographic profiles of all children and families enrolled in this Early Intervention program. The demographic factors of the nine families excluded due to missing data / ineligibility did not vary significantly from the study population. Table 1: Demographic Characteristics of Study Participants
a control group denotes all controls with the exception of baseline and follow-up ages, which denote only control with motor delay; * p<0.05 Aquatic therapy group members (93.3 %) were significantly (p=0.03) more likely than controls (56.4%) to have a gross motor delay. Slightly more than two-thirds (67.5%) of controls participated in a group led or co-led by an Early Intervention practitioner. Parent Perceptions of EI Service Delivery Table 2: Mean and Prevalence Data for Parent Reported Perceptions of EI Service Delivery
Parent satisfaction was higher in the AT group for the four domains of Early Intervention service delivery with the exception of family-centered care, which did not differ between AT group and controls (97%). Mean satisfaction scores for family-centered and transdisciplinary care were similar across the AT group, all controls, and sub-groups. Mean satisfaction scores for natural environments were higher for the AT group (43.07) compared to all controls (40.31, p=0.007), controls with motor delay (37.86, p=0.003), and controls participating in an EI group (41.5, p=0.18). Mean satisfaction scores are presented (Table 2) for changes in children's gross motor skills for the AT group (27.13), all controls (23.85, p=0.007), controls with gross motor delay (24.5, p=0.028), and controls participating in a group (24.58, p=0.05).
This study examines the effect of aquatic therapy as an adjunct to traditional EI services on parent perceptions of service delivery. The results of this study suggest that parents whose children participate in aquatic therapy, in addition to home visits by an EI therapist, are more likely to report overall satisfaction than families who receive only home visits. This trend of high satisfaction is consistent with a program evaluation of pediatric aquatic therapy where Martin reported an attendance rate of 85% and high levels of parent involvement and motivation (Martin, 1983). However, this study lacks a control group, which precludes comparisons in service delivery models. Our data suggest that the majority of families involved in EI report satisfaction that services are family-centered and transdisciplinary. These results are consistent with the research of Iversen and colleagues (2003) and O'Neil and colleagues (2001) who examined parent satisfaction with EI service delivery and showed that the large majority of parents report agreement with statements regarding the family-centered nature of EI services. To our knowledge, this is the first study to address parent perceptions of EI beyond family-centered care to include transdisciplinary care, natural environments, and parents' perceptions of changes in children's functional mobility. An older study examining therapists' attitudes to transdisciplinary care and reveals that this model facilitates a holistic approach to goal development and treatment planning, but not team building, which the authors attribute to challenges to sharing professional resources and responsibilities (Rosen, et al., 1998). The high rates of parent satisfaction with the transdisciplinary nature of EI services in our study likely reflects recent legislative changes governing EI to adopt a more holistic approach to child development. These data emphasize the importance of integrating a transdisciplinary approach into student physical therapist pediatric curriculums in light of earlier research suggesting that this model may be challenging to incorporate. Parent satisfaction with the degree to which their EI services incorporates their child's natural environments and improves children's mobility is significantly higher in the aquatic therapy group compared families receiving only home visits. The results of this study show that collaboration between EI agencies and community programs has positive effects on promoting parents' perception that EI services maximize children's opportunities for learning in a variety of locations. The rates of satisfaction with transdisciplinary care did not vary significantly between the aquatic therapy group and controls who participated in an EI group. The similar rate of parent satisfaction is likely a reflection of the attributes of a community-based group: parent interaction, peer socialization, opportunity to exchange resources and support as well as an opportunity to be involved in the community. In our study, children who participate in a group represent a spectrum of developmental delays. However, of the 22 children with motor delay, only four participate in a group, and of those four, three had mild delays and one had more significant physical disability. Therefore, it is possible that the concepts of natural environments and community integration have different meanings for the parents of children in the EI groups compared to parents of children in the aquatic therapy, the majority of whom demonstrate functional mobility limitations. Aquatic therapy and group participation appear beneficial in promoting natural environments for children with physical disabilities and developmental delay, respectively. Further research is needed to determine if current EI groups address the unique needs of children with physical disabilities. Small numbers in this study prevented such analysis. Higher rates of satisfaction with children's mobility are likely a reflection that the children in aquatic therapy demonstrate greater gains in their mobility. It is possible that an association exists between the concept of service delivery in natural environments and parent's perception of their children's functional mobility. If parents perceive that their child has opportunities for successful independent play and function in a variety of settings (home, playground, pool, community center, etc), parents may perceive that their children are making progress. Parents of children with functional limitations who only receive therapy in a home setting may perceive that their children are making relatively less progress due to continued difficulty with community ambulation, negotiating a walker or wheelchair in community centers, playgrounds, and stairs. Higher rates of satisfaction with regard to natural environments and changes in functional mobility suggest that the two are integrated. Incorporating physical therapy intervention strategies in a variety of environments promotes parent satisfaction and increased perception of improvements in children's functional mobility. This could have important implications for parents' level of stress, perceived capacity for care giving, and children's perceptions of their own capabilities. In post-hoc analyses, we examined if parent satisfaction with EI is influenced by children's progress and found no evidence for this (data not shown). This finding is likely due to high rates of perceived family-centered and transdisciplinary care: parents feel that they are an important part of the EI team and therapists are utilizing a holistic approach to child development. This highlights the important role of EI therapists in developing appropriate, measurable goals that allow families to be encouraged despite potentially slow progress. There are several strengths to this study that underscore its significance for early childhood professionals and policymakers. First, to our knowledge, this is the first study to explore parent perceptions across multiple domains of EI service delivery. Secondly, this study utilized two-group post-hoc study design with cases and randomly selected EI recipients to serve as controls. The statistically significant differences in both parent satisfaction and children's functional mobility following aquatic therapy reduces the role of chance in explaining these results. Furthermore, the design of randomly selecting controls and the high rate of participation among selected controls reduces the chance of selection bias. The methodology of the survey design and implementation allowed subjective data to be quantified and analyzed objectively, which reduced potential measurement bias. Both of these study attributes reduce the role of measurement bias in this study. Finally, controls were randomly selected from all EI participants and that the groups varied very little demographically, which reduces the role of confounding by sociodemographic variables. We acknowledge several limitations to this study. First, the retrospective component of the study precludes baseline parent satisfaction data. Although we that our findings are a valid measure of parent satisfaction, further research should include baseline data and children's functional mobility to address trends. A second limitation of this study is the small sample size, which could limit the power of the study and prevented further sub-analyses of children with motor delays who also participate in an EI group. Large sample sizes are more ideal when examining multiple factors such as four domains of parent satisfaction as well as children's mobility skills. However, this study achieved its purpose of describing parent satisfaction with models of EI, and more research with larger sample sizes would further enhance the field. A last limitation to this study is a lack of generalizability. The demographic variables of study participants indicate that this cohort is predominantly White and non-poor, limiting the generalizability of these results to all EI programs, especially those in urban areas. Further research is needed to conduct a study that includes ethnically and economically diverse populations. Despite these limitations, we believe that this paper provides strong evidence that aquatic therapy can be a very useful adjunct to EI services to improve parent satisfaction and children's gross motor skills. We found parents of children enrolled in Early Intervention due to neuromotor delays and disabilities report satisfaction, overall with service delivery. However, participation in a weekly aquatic therapy program at a community pool, combined with home visits is associated with the highest rates of satisfaction for all domains. Moreover, parents of children with motor delays and disabilities who do not participate in any type of group report the lowest satisfaction, overall, and in the domains of natural environments and improvements in gross motor function, in particular. The findings of this study have important implications for EI practitioners, program directors, and policy makers regarding potentially best practice for EI.
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The Individuals with Disabilities Education Act (IDEA) is the federal policy governing Early Intervention (EI) service delivery for infants and toddlers at-risk for developmental delays and disabilities. EI services that integrate aquatic therapy at a community pool and home visits might best address these legislative mandates, but this has not been examined. This study examines parent satisfaction with the degree to which their child's EI was family-centered, transdisciplinary, occurring in natural environments, and associated with improvements in functional mobility. Mean satisfaction rates were calculated and compared across aquatic therapy + home visits and home visits only groups. Overall mean satisfaction rates were higher in the aquatic therapy + home visits group. Parents of children with neuromotor delays and disabilities report highest satisfaction with EI services when therapy occurs in home and community settings. These findings have important implications for parent modeling, education, and support as well as facilitating children's social participation.