Parents' experiences with services and treatment for their children diagnosed with cerebral palsy
Laurie Knis-Matthews1, Mary Falzarano, Deborah Baum
1Department of Occupational Therapy, Kean University, Union, New Jersey 07083, USA. lknis@kean.edu
Insights
Parents of children with cerebral palsy (CP) found group constraint-induced movement therapy (CIMT) beneficial, highlighting the need for better family support and accessible resources. The group format offered social advantages alongside therapeutic gains.
Area of Science:
- Pediatric Rehabilitation
- Occupational Therapy
- Family-Centered Care
Background:
- Constraint-Induced Movement Therapy (CIMT) is established for pediatric efficacy.
- Limited research explores parental experiences with CIMT for children with cerebral palsy (CP).
- Understanding family support needs is crucial for children with CP.
Purpose of the Study:
- To explore parents' experiences with CIMT for their children diagnosed with CP.
- To identify challenges in accessing information and support for families of children with CP.
- To assess the impact of a group format for CIMT.
Main Methods:
- Qualitative research design.
- In-depth interviews with four parents of children with CP undergoing group CIMT.
- Thematic analysis of interview responses.
Main Results:
- Parents reported significant life changes following a CP diagnosis.
- Family support was identified as critical for coping.
- Difficulties in obtaining necessary information and support were common.
- The group CIMT format was perceived positively, offering therapeutic and social benefits.
Conclusions:
- Group CIMT offers advantages for children with CP, including social benefits.
- Enhanced family support systems and resource accessibility are vital for families raising children with CP.
- Qualitative insights from parents provide valuable perspectives on pediatric rehabilitation services.
Abstract:
While there is a considerable body of knowledge investigating the efficacy of constraint-induced movement therapy (CIMT), there is a need for information focusing on parents' experiences when their children receive these services. This qualitative research study initially explored the experiences of four parents with children who are diagnosed with cerebral palsy (CP) and who participated in CIMT using a group format. Additionally, the richness of the information shared by parents provided insights on other important issues related to family supports when raising a child and the availability of resources for children diagnosed with CP. Response analysis from in-depth interviews with parents resulted in three themes: (a) Everything in my family changed when my child was diagnosed with CP and the support I feel from my family makes all the difference in how I cope. (b) It was so hard to get the information and support that I needed for my child. (c) The group format enhanced CIMT for my child and provided social benefits as well. Findings from this study suggest there are benefits of using CIMT in group formats.
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