Helping Kids with Hemiplegia Camp: Therapeutic Rationale, Handling Techniques, and Activity Recommendations
By Kaitlynn Durkin, SPT
Throughout my Doctor of Physical Therapy education at the University of North Carolina at Chapel Hill, my passion for working with children has been strengthened by my pediatric coursework and hands on experiences working with the pediatric patient population. I had the opportunity to volunteer with UNC Children’s Helping Kids with Hemiplegia camp for 5 consecutive days in the summer of 2019, where I was paired with an 8-year-old girl with a diagnosis of spastic hemiplegic cerebral palsy.
Cerebral palsy (CP) is group of non-progressive neurological disorders that occurs as a result of a disturbance in the fetal or infant brain resulting in impaired cognition, sensation, perception, and gross motor function.1,2 The most common form of CP is congenital hemiplegia, which has an incidence of 1-2 in every 1000 live births.1–3 Hemiplegia is characterized by impaired motor control and function on one side of the body.2 Structural limitations, including spasticity, contractures, and decreased force production, result in balance, movement, and postural impairments, restrict children’s functional use of affected extremities, and impact their participation in self-care, education, and recreational activities.1–3 Unsuccessful attempts to use the affected upper extremity for daily activities results in increased reliance on the unaffected extremity and decreased use of the affected extremity, which has been termed “learned non-use.”4
Constraint-induced movement therapy (CIMT) is an intensive intervention with the goal of preventing learned non-use and improving unimanual capacity of the hemiplegic upper extremity in children with CP.2,5 During CIMT, the unaffected upper extremity is immobilized in a cast, mitt, or sling in order to promote use of the affected upper extremity during unimanual, functional activities.2,5 Bimanual intensive training (BIT) is another common form of intensive therapy for children with hemiplegic CP that focuses on improving bimanual coordination and upper extremity function through fun, age-appropriate, activity-based interventions.2,5
Helping Kids with Hemiplegia, which was founded in 2005, is a therapeutic summer camp that implements CIMT, BIT, and therapeutic handling intervention strategies in order to enhance the upper extremity function of children with hemiplegic cerebral palsy.6 This 8-day camp provides patient-centered, age-appropriate, goal-directed, and activity-based interventions aimed at improving gross and fine motor skills.6 I witnessed how these evidence-based interventions not only helped participants improve their upper extremity function and achieve functional goals, but how it also helped them gain independence, develop self-confidence, and form connections with their peers. After volunteering with Helping Kids with Hemiplegia, I knew that I wanted to create a capstone project that would serve and support the camp, campers, and their families.
Statement of Need:
Helping Kids with Hemiplegia relies on student volunteers to help deliver interventions and assist campers with activities under the supervision of licensed physical and occupational therapists. Student volunteers consist of pre-occupational and pre-physical therapy students, as well as students currently enrolled in occupational and physical therapy programs. The volunteer to camper ratio is 2:1, with one graduate student and one undergraduate student paired with each camper. Since volunteers have varied backgrounds and levels of education, many have no previous hands-on experience working with children with a neurological condition. Training sessions are held each morning before the start of camp to educate volunteers on the activity goals and teach therapeutic handling techniques. Given the amount of information that needs to be covered in a limited amount of time each morning, there is a need for written educational materials to supplement in-person training.
For several years Holly Holland OT/L, ATP and Kerry Blazek, PT, DPT, PCS have wanted to create a camp manual that will not only assist with volunteer education but also enable them to share Helping Kids with Hemiplegia’s model with clinicians across the country who are looking to create similar programs. After expressing my desire create a capstone project for camp, we agreed that this would be an excellent project for me to collaborate with them on.
Purpose and Overview:
The purpose of this project was to provide materials that describe therapeutic rationale, handling techniques, and activity recommendations based on the Helping Kids with Hemiplegia camp model. The manual will serve as a supplement for student volunteers to reference prior to and during camp in order to help them feel well-equipped and confident in their abilities to assist their camper during age-appropriate, play-based CIMT and BIT interventions. These materials are also intended to serve as a reference for therapists across the country who are seeking guidance on how to design and implement a CIMT camp in their community.
In order to help educate volunteers and clinicians, I created a camp manual that defines gross and fine motor goals, describes proper form and body mechanics, explains handling techniques, and provides recommendations on how to incorporate therapeutic goals for various camp activities. I watched the Health Literacy Basic Concepts voice-thread created by Karen McCulloch, PT, PhD, MS, FAPTA, NCS(E) in order to ensure that the manual was written at an appropriate literacy level for volunteers of all backgrounds.
Volunteers and clinicians will also be provided with an evidence table that reviews best evidence on CIMT, BIT, neurodevelopmental therapy (NDT), and lower extremity interventions in children with hemiplegic CP. Finally, my critically appraised topic examines best evidence for CIMT using the clinical question: “For a child with hemiplegic cerebral palsy, is constraint induced movement therapy more effective in improving upper extremity strength and function when compared with bimanual therapy?”
Over the course of my capstone project, I received ongoing feedback from my committee members that guided the development of my products. Additionally, I sought feedback from classmates who took the PHYT 880 Child and Family Assessment elective, classmates who have previously volunteered at camp, and UNC’s Pediatric Resident, Katelyn McNamara, PT, DPT. Based on this feedback, which was received in the form of a survey, I have made several modifications, including adding a table of contents and providing a brief description of each activity, to further improve the quality of the manual before it is distributed to camp volunteers this summer. I also received feedback that having pictures to accompany each skill would be helpful. This a goal that I hope to be able to achieve this summer at camp. Finally, I have created a second survey to share with camp volunteers in the future to identify a need for further revisions.
Having the opportunity to volunteer with the Helping Kids with Hemiplegia Camp in 2019 was an incredibly rewarding experience. It was humbling to witness the profound effect this camp has on the lives of children with hemiplegia and their families. Watching the pride and joy campers felt as they were able to participate in a summer camp that fosters connections with their peers, celebrates their abilities, and helps them achieve their goals sparked a desire in me to further serve this community.
The experience of creating this resource for camp provided me with the opportunity to learn from experienced therapists, identify personal strengths and areas for improvement, and grow as a clinician. I plan to use this knowledge to better serve my patients and better empower parents and families of children with neurological conditions, such as cerebral palsy. I am pleased with the results of my capstone project and am looking forward to receiving feedback from volunteers this summer, so that I can continue to refine my products.
This project would not have been possible without the ongoing commitment and support of my committee members, advisors, mentors, and peers.
To Holly Holland and Kerry Blazek – Thank you dedicating your time and expertise to serving on my committee. Your passion for the Helping Kids with Hemiplegia camp is inspiring and your hard work does not go unnoticed. I hope that I can serve my future patients with same dedication and zeal. I appreciate the invaluable feedback that you have provided me throughout this process and am honored that you entrusted me with a project that is so near and dear to your hearts.
To Debbie Thorpe – I am so appreciative of your guidance, support, and mentorship as my capstone advisor. Thank you for being readily available throughout this project to assist with brainstorming, answer questions, and provide feedback. Your dedication and commitment to your patients and students throughout your career as a physical therapist and educator is inspiring. Thank you showing us the power of connecting with and advocating for our patients. I hope that you enjoy a well-deserved retirement!
To Dana McCarty and Katelyn McNamara – Thank you so much for supporting my aspirations for a career in pediatrics. I am inspired by your passion for serving the pediatric population and am so grateful for wisdom and insights you have shared with us.
To the UNC Faculty – Thank you so much for sharing your knowledge, wisdom, and love for the profession of physical therapy with us these past three years. I am so grateful for all the support and encouragement you have shown me.
To the Class of 2021 – Thank you for all your encouragement and support over the past three years! I’m thankful to have gotten to know you, learn with you, and learn from you. I’m proud to call you my classmates, excited to call you my colleagues, and know that each one of you will make a profound impact on the lives of your patients and the field of physical therapy.
- O’Shea TM. Diagnosis, treatment, and prevention of cerebral palsy. Clin Obstet Gynecol. 2008;51(4):816-828. doi:10.1097/GRF.0b013e3181870ba7
- Hoare BJ, Wallen MA, Thorley MN, Jackman ML, Carey LM, Imms C. Constraint-induced movement therapy in children with unilateral cerebral palsy. Cochrane Database Syst Rev. 2019;4:CD004149. doi:10.1002/14651858.CD004149.pub3
- Dewar R, Love S, Johnston LM. Exercise interventions improve postural control in children with cerebral palsy: a systematic review. Dev Med Child Neurol. 2015;57(6):504-520. doi:10.1111/dmcn.12660
- Coker P, Karakostas T, Dodds C, Hsiang S. Gait characteristics of children with hemiplegic cerebral palsy before and after modified constraint-induced movement therapy. Disabil Rehabil. 2010;32(5):402-408. doi:10.3109/09638280903171592
- Sakzewski L, Ziviani J, Abbott DF, Macdonell RAL, Jackson GD, Boyd RN. Randomized trial of constraint-induced movement therapy and bimanual training on activity outcomes for children with congenital hemiplegia. Dev Med Child Neurol. 2011;53(4):313-320. doi:10.1111/j.1469-8749.2010.03859.x
- Helping Kids with Hemiplegia Summer Camp. UNC Children’s. https://www.uncchildrens.org/uncmc/unc-childrens/care-treatment/therapy/hemiplegia-camp/. Accessed November 20, 2020.