Date Presented 4/7/2016
Caregivers of children with hemiplegic cerebral palsy experience changing roles and relationships, positivity regarding their child’s future, and fear of the unknown while their child receives constraint-induced movement therapy treatment. This study explores how the treatment may affect a caregiver and the caregiver–child dynamic.
Primary Author and Speaker: Rose Golden
Additional Authors and Speakers: Yan-Hua Huang, Claudia Peyton
Contributing Author: Trevor Glenn
PURPOSE: The purpose of this study was to examine the experience of constraint-induced movement therapy (CIMT) treatment among caregivers of children with cerebral palsy (CP). Experience of CIMT refers to how caregivers feel about their child receiving CIMT treatment and any behavioral or role changes within the caregiver and child relationship.
BACKGROUND: Though research has demonstrated CIMT’s effectiveness in improving functional capacity for children with CP, no studies have specifically looked at how caregivers of children with CP feel about their child going through the treatment. The efficacy of CIMT programs often rely on a caregiver’s encouragement and persistent prompts to the child to use the affected limb during functional tasks. Arguably, CIMT treatment places even more burden on the caregiver, and this research sought to examine the experience of CIMT to gain additional insight into how caregivers may be affected by the treatment.
DESIGN: A narrative study (as described by Clandanin and Connelly) was chosen to construct a single detailed story of the lived experience and to identify common themes (regarding how the treatment and its protocol affected the caregivers, their child [from the caregiver’s perspective], and their relationship with their child).
PARTICIPANTS: Six caregiver participants were selected for the study. Inclusion criteria were as followed: caregiver of a child with hemiplegic CP; child received formal CIMT (through an occupational or physical therapist) for ≥2 wk; ≥18 yr old; and proficient in both oral and written communication in English or Spanish. Researchers accessed participants with the assistance of Los Angeles County’s California Children’s Services.
METHOD: Semistructured interviews were completed in English and Spanish.
ANALYSIS: A three-dimensional model was used to analyze the collective storyline in terms of its temporal, physical, and social contexts. Researchers then analyzed the prevalence and salience of thematic categories to determine that aspects of a caregiver’s experience of CIMT are relevant for implementing the treatment successfully.
RESULTS: Participants’ stories followed three major themes: changing roles and interpersonal relationships, positivity regarding the child’s future, and fears about the unknowns associated with CIMT treatment. Subthemes under the first theme include caregiver’s roles and time and scheduling, accountability to the protocol, insecurities regarding how to best facilitate the child’s success, and changes in interpersonal relationships. Subthemes under the second theme include motivators to continue with the protocol and adaptations made to the CIMT intervention. Subthemes of the third theme include hesitance of bracing the child, fears of behavioral changes, and fears of personality changes.
DISCUSSION: Results from this study are in line with past research regarding the additional burden caregivers of children with disabilities have and the rigorousness of the CIMT protocol and speak to the frustration experienced by caregivers.
IMPACT STATEMENT: Data gathered from this study will assist therapists who recommend and implement CIMT treatment with children with CP in understanding how the treatment may affect a caregiver and the caregiver–child dynamic to ascertain the treatment’s feasibility.
