Abstract
This research explores caregiver perspectives on constraint-induced movement therapy, used with children with cerebral palsy. The focus is on the lived experiences of the caregivers, specifically ftheir perspectives of the treatment and therapist interactions throughout treatment. This research advances practice by further defining caregiver needs and experiences and focusing on ways therapists can develop strong therapist-caregiver relationships throughout an intensive form of therapy.
Primary Author and Speaker: Erica Wentzel
Additional Authors and Speakers: Janelle Barna
Constraint-induced movement therapy (CIMT) is a treatment used to improve upper extremity functioning for populations experiencing hemiplegia (Taub et al., 2004). Constraint-induced movement therapy has been used and shown to be effective for children with cerebral palsy (CP) and involves the constraint of the individual’s unaffected extremity along with intensive and shaped repetitive therapeutic activities to enhance overall functional use of the affected extremity (Bonnier et al., 2006; DeLuca et al., 2017). This type of therapy is intensive, and often results in frustration and other negative reactions from the child, hesitation from therapists to utilize it, and increased time obligations and apprehension about the impacts on the child’s behavior from parents (McConnell et al., 2014; Sakzewski et al., 2014). Despite these associated struggles, many parents see the benefit of this type of therapy and report that it is worthwhile (Wallen et al., 2008). Despite the extensive literature on the effectiveness of CIMT for children with CP, few studies solely explore parental perspectives or ways that therapists can support caregivers throughout CIMT. The purpose of this study was to further explore caregiver perspectives of CIMT treatment and therapist-caregiver interactions throughout treatment. This research study followed a qualitative phenomenological approach using in-depth, semi-structured interviews with two parents of children with CP who received CIMT. Participants were recruited via convenience and criterion sampling through a recruitment flyer distributed to various CIMT Facebook pages. Inclusion criteria included caregivers/parents between the ages of 18-65, who have children diagnosed with CP who received CIMT within the past five years. Interviews were transcribed verbatim and inductive, manual open-coding thematic analysis was completed following the procedure outlined by Braun and Clarke (2006). Three main themes and nine sub-themes emerged from the data. One theme (structure and results of the camp) addressed the first research question: how do caregivers/parents feel throughout the implementation of CIMT? Another main theme (struggles/challenges) was used to answer the second research question: what specific challenges, burdens, and frustrations do parents experience when their child is receiving CIMT? The last main theme (therapist actions/relationships) was utilized to answer the last research question: how can occupational therapists provide support for parents throughout the time their child is receiving CIMT? Parents reported the significance of having one-on-one attention for their children and carryover activities as essential parts of the camp, and were enthusiastic about the potential opportunity to enroll their children in another program. They also reported challenges experienced with CIMT, including wishing they had found the therapy sooner and wishing there was increased accountability from the therapists after the camp and social connections with other parents and children during the camp. Lastly, parents emphasized the importance of the establishment of the therapist-caregiver relationship developed through clear explanations about CIMT to both the parent and child and the prioritization of daily communication with parents throughout the camp. The findings support the impact therapists have on caregivers whose children receive CIMT, and deepen therapist’s awareness and understanding of parental perspectives during this controversial treatment.
Bonnier, B., Eliasson, A., & Krumlinde-Sundholm, L. (2006). Effects of constraint-induced movement therapy in adolescents with hemiplegic cerebral palsy: A day camp model. Scandinavian Journal of Occupational Therapy, 13(1), 13–22. https://doi.org/10.1080/11038120510031833
DeLuca, S. C., Trucks, M. R., Wallace, D. A., & Ramey, S. L. (2017). Practice-based evidence from a clinical cohort that received pediatric constraint-induced movement therapy. Journal of Pediatric Rehabilitation Medicine, 10(1), 37–46. https://doi.org/10.3233/PRM-170409
McConnell, K., Johnston, L., & Kerr, C. (2014). Efficacy and acceptability of reduced intensity constraint-induced movement therapy for children aged 9–11 years with hemiplegic cerebral palsy: A pilot study. Physical & Occupational Therapy in Pediatrics, 34(3), 245-259. https://doi.org/10.3109/01942638.2013.866611
Sakzewski, L., Ziviani, J., & Boyd, R. N. (2014). Delivering evidence-based upper limb rehabilitation for children with cerebral palsy: Barriers and enablers identified by three pediatric teams. Physical & Occupational Therapy in Pediatrics, 34(4), 368-383. https://doi.org/10.3109/01942638.2013.861890