It takes an island: Empowering children with upper limb differences

April is Limb Difference Awareness Month and a time to raise awareness, celebrate resilience, and advocate for those who live with limb loss or limb difference. This article highlights a specially designed camp for children with upper limb differences (ULDs) in Hawai’i. A first-of-its-kind camp for the Hawaiian islands, it included intentionally designed and culturally relevant experiences for children and their families. A description of both the unique camp activities and parent perceptions underscores the benefits of the camp for the children with ULDs and their families. 

Children With Congenital Upper Limb Differences  

Congenital ULDs are physical differences of the hand or upper extremity that are present at birth and have the potential to influence both the appearance and the function of the child’s hand (American Academy of Orthopedic Surgeons, n.d.). ULDs occur in 20 out of every 10,000 babies born and are more prevalent in boys than girls (Martens & Badger, 2024). Children with ULDs frequently encounter negative social stigmatism and exclusion from childhood experiences as a direct result of having a physical difference (Nelson et al., 2024). Celebrating the unique abilities of children with ULDs is a step toward equality, inclusion, respect, and a better quality of life for children with limb differences and their families (Martens & Badger, 2024). 

Experiences of Parents of Children With Limb Differences 

Congenital upper extremity limb differences exist on a spectrum ranging from mild to severe (Lake et al., 2021). The relationship between the limb differences of children and their psychosocial outcomes is influenced by how children engage in their environment as well as how they are perceived and included within the social constructs they occupy (Martens et al., 2023). It is important to consider that hands are one of the first things noticed by others, second only to the face (Lake et al., 2021).  

Parent perceptions are critical to understanding the challenges experienced by children with ULDs. Additionally, studies have suggested that both parental adjustment to their child’s physical differences and familial support are key contributors to positive psychosocial well-being in children with ULDs (Oliver et al., 2020). Occupational therapy practitioners (OTPs) are well qualified to assess client-centered practices and ensure that child and family engagement is included as a component of health equity when developing unique community-based programs (Scaffa & Reitz, 2020).  

Benefits of Therapeutic Camps 

For many in the United States, attending a camp is considered an important childhood occupation. With play being one of the most important occupations in childhood, specially designed hand camps normalize childhood experiences through accessible and socially constructed activities (Tufte et al., 2024). Children with ULDs are often excluded from typical camp experiences simply because of the lack of universal and equitable design. They often report negative peer reactions during these social situations as a result of their physical differences (Martens et al., 2023). Children with ULD who participate in specially designed hand camps have been found to increase their independence with ADLs; decrease their own and their parents’ anxiety; increase their self-esteem; and increase their social, emotional, and physical functioning (Lake et al., 2021).  

Camp Ho’omana: Endless Possibilities 

Camp Ho’omana, a unique hand camp designed for children with ULDs, was developed through a collaboration between the Hawai’i Pacific University (HPU) Doctor of Occupational Therapy program and the upper extremity team at the Shriners Children’s Hawai’i complex. The dream of creating this camp had been more than a decade in the making, but challenges with both family and health care staff time limitations made it difficult for this vision to become a reality. Historically, hospital-developed ULD camps have not been sustainable because they rely heavily on the emotional and physical labor of the parents of children with limb differences (Lake et al., 2021). These challenges were overcome with an opportunity to leverage a collaboration between HPU and Shriners Children’s Hawai’i to meet the unique needs of families in Hawai’i.  

Sarah Knox, a coauthor of this article and an occupational therapist at Shriners Children’s Hawai’i, is a leader of the Hawai’i-based complex upper extremity team that provides specialized care to children with congenital hand differences. As one of the camp’s main organizers, Sarah explained, “We wanted to establish a network of support where families and children could learn from one another and enjoy themselves.” Because Hawai’i has to bring specialty pediatric upper extremity surgeons from other locations across the country, it is crucial that occupational therapy is able to assist the surgeons in planning and evaluating these children’s unique needs, and then follow the children from birth until their transition to young adults to provide the highest quality of care. The camp is more than just an opportunity for recreation; it addresses critical issues, such as limited access to resources and a lack of information about ULDs. By bringing seven families and their children together for the one day camp, the aim was to strengthen their sense of community and improve the children’s overall well-being. 

A pivotal moment at the inaugural camp session came through the involvement of Mike Hoxie, an adult with a ULD and a graduate of Shriners. Mike served as a role model, interacting with the children and sharing his inspiring journey with the parents. His story had a lasting effect because children saw a glimpse of their own futures filled with endless possibilities. One child exclaimed, “Look, Mom! He has an arm just like me!” This moment of connection helped the children realize they were not alone in their experiences.

As a result of the relationships fostered at the camp, families became more proactive and gained clarity about their needs from the health care team. After the camp, one of the younger campers, inspired by the experiences of an older child, requested a prosthesis so they could ride their bike and play the ukulele. 

Camp Ho’omana: Olympic-Themed Activities  

When the camp was launched, students in the HPU Doctor of Occupational Therapy program served as counselors and created activities that focused on occupational balance to highlight each child’s unique strengths and abilities (see Table 1). While the children engaged in the Olympic events, the parents participated in a specially designed empowerment activity (see Figure 1) in which they shared lived experiences raising a child with a ULD.  

Table 1. Camp Ho’omana and Olympic Activities 

Figure 1. Parent Empowerment Activity 

Case Example 1: Enzo  

Enzo is an 11-year-old boy who traveled with his mom, Ka Dey, from Maui to attend Camp Ho’omana in Oahu. Enzo has been receiving services from Shriners Hospital since 2016 for right transverse below the elbow deficiency and loves to participate in sports, such as baseball, football, skateboarding, and basketball. He uses a specialized prosthetic to play the ukulele and another one for biking. Camp Ho’omana offers a variety of activities to ensure a client-centered approach with the ability to adapt the activities Enzo was interested in to increase independence and self-expression. Ka Dey, expressed, “Enzo can be reserved in new social situations, and I watched him open up and ask other children about their limb differences.” She continued, “He was especially drawn to Mike, an adult peer mentor and national pickleball champion who shared his experience of playing the game using a prosthetic arm. Enzo talked about Mike and the other kids for weeks after the camp experience.” During the many activities Enzo engaged in, the HPU students took the opportunity to listen to his adaptive sports experiences and the challenges he sometimes faced in social situations. It was evident that Enzo’s confidence grew throughout the camp day as he engaged with peers in the Olympic sporting events who shared similar physical differences and life experiences.  

Case Example: Patrick 

Patrick is a 4-year-old boy with a diagnosis of Poland syndrome and left hand symbrachydactyly. He is energetic, active, and fearless when it comes to participating in any activity he enjoys. His mother, Adeline, reported Patrick has “no trouble fitting in and feeling accepted by his peers.” He and his “mighty hand,” as she put it, were already successful in life before attending Camp Ho’omana, but Adeline reported that Patrick has had increased confidence after camp and was inspired by Enzo and the other older kids. Since the camp experience, Patrick has become interested in learning more about prosthetics and how to do more activities. Through a play date, he has even connected with others who had participated in the camp. Adeline reflected, “We’re so glad we did it!” 

Lessons Learned and Next Steps 

Our teamed learned important lessons which confirmed OTs unique role to support children with ULDs and their families through the development of contemporary and culturally relevant therapeutic hand camps and group social experiences. While we initially planned the camp with a focus on the children with ULDs, we realized how critical it was to provide specially designed activities to empower and support the whole family. Parents of children with ULDs can inspire culturally and contextually relevant programs by sharing their lived experiences and strong desire to help fellow families of children with ULDs (Oliver, Dixon, & Murray, 2020).  

Looking to the future of Camp Ho’omana, the collaboration between HPU and Shriners Children’s Hawai’i will continue to grow and we hope to add additional activities for parents as well as siblings. We also plan to expand the camp to reach more families, improving equity and access for those traveling from outer islands through fundraising efforts, create a teenage-specific program, and eventually offering an overnight experience at a dedicated camp location. Additionally, this partnership will provide valuable opportunities for research and help develop specialized skills for the clinical doctoral degree students at HPU. 

References 

American Academy of Orthopedic Surgeons. (n.d.). AAOS clinical practice guidelines. https://www.aaos.org/quality/quality-programs/clinical-practice-guidelines/  

Lake, A., Cerza, S. P., Butler, L., Oishi, S., & Brown, A. (2021). The impact of therapeutic camp on children with congenital hand differences. Cogent Psychology, 8, Article 1938439. https://doi.org/10.1080/23311908.2021.1938439  

Martens, S. A., & Badger, T. A. (2024). SELF-CONCEPT development of school-aged children with congenital upper limb differences: A mixed-methods study. International Journal of Orthopaedic and Trauma Nursing, 52, Article 101066. https://doi.org/10.1016/j.ijotn.2023.101066  

Martens, S. A., Tuberty, S., & James, M. A. (2023). Self-concept development in children with limb differences: A scoping review. International Journal of Orthopaedic and Trauma Nursing, 49, Article 100997. https://doi.org/10.1016/j.ijotn.2023.100997  

Nelson, D., Hauschild, M., Johns, A. L., & Lightdale-Miric, N. R. (2024). Development of a group curriculum for children with congenital upper limb difference (CULD) and their caregivers. Orthopaedic Nursing, 43(2), 93–102. https://doi.org/10.1097/NOR.0000000000001015  

Oliver, J., Dixon, C., & Murray, C. D. (2020). Being the parent of a child with limb difference who has been provided with an artificial limb: An interpretative phenomenological analysis. Disability and Rehabilitation, 42, 1979–1986. https://doi.org/10.1080/09638288.2018.1543462   

Scaffa, M. E., & Reitz, S. M. (2020). Occupational therapy in community and population health practice (3rd ed.). F.A. Davis. 

Tufte, J., Tuberty, S., Jenkins, A., Clubok, L. F., Grazian, N., Hubbs, M., & Levchak, O. (2024). Occupational therapy and congenital upper limb differences. OT Practice, 29(4), 8–9. https://www.aota.org/publications/ot-practice/ot-practice-issues/2024/dei-occupational-therapy-and-congenital-upper-limb-differences  

Jessi Williams, Chloe Kokenes, Colbie York, and Erin Rose Cruz are students in the Doctor of Occupational Therapy (OTD) program at Hawai'i Pacific University (HPU). They are passionate about advancing equity and empowerment through community collaborations. Emerson Hart, PhD, BCP, OTR/L, Assistant Professor; and Patty Coker-Bolt, PhD, OTR/L, FNAP, FAOTA, Professor, are faculty members in the OTD program at HPU who are advocates for innovative pediatric programs that build students’ clinical reasoning and cultural competency. Sarah Knox, OTR/L, is an Occupational Therapist at Shriners Children's Hawai’i who provides specialty care for children with upper limb differences. 

Acknowledgment 

Special thanks to Amy Lake, OTR, CHT, an Occupational Therapist/Certified Hand Therapist at Texas Scottish Rite Hospital for Children, who provided mentorship for the development of Camp Ho’omana.