Investigating How Parents Share Information About a Structural Condition with Their Children Through Conversations About Congenital Clubfoot

Background: Clubfoot is a common congenital musculoskeletal condition, and standard treatment involves manipulation and casting in the first few weeks of life followed by bracing that extends into early childhood. Children with congenital clubfoot typically do not recall treatment with Ponseti casting in infancy, however, childhood treatment and monitoring (daily bracing, possible repeat casting and surgery for relapse, physical therapy, appointments) may result in a heightened awareness. No studies exist investigating how families navigate conversations about congenital clubfoot and subsequent treatment with their children. This study explores how parents share information about clubfoot diagnosis and guide their children in understanding the importance of treatment.

Methods: Parents of clubfoot children between the ages 5 to 18 years were eligible to participate. Primary recruitment occurred through social media on Facebook clubfoot parent support groups. Interested participants were directed to an electronic screening survey and consent form from which the study survey could be completed after confirming eligibility and decision to participate. Parents were also invited to take part in a semi-structured interview to share significant experiences.

Results: Survey responses were received from 74 parents, and 23 participated in the semi-structured interview. 91% of parents indicated having discussions about clubfoot with their children, beginning at a median age of 3 years. 40% initiated these conversations as a result of their child asking questions, and how having clubfoot affected their child’s self-esteem was noted to be the predominant concern. The age at which parents first discussed clubfoot with their child was significantly lower for those who “strongly agree” that their child understands their condition versus those who “agree” (p=0.023) (Figure 1). Although 68% of parents agreed receiving guidance from their orthopaedic provider would be helpful for these discussions, only 13% actually noted receiving direct advice. Parents who received guidance from their provider had children who were receiving treatment at an older age than those who did not receive guidance (p=0.009) (Figure 2). Recurrent themes across parent interviews included the importance of being open from the beginning, sharing photos and showing casts to allow the child to learn about early treatment, explaining rationale behind therapies to understand their importance, and supporting children as they notice differences in physical appearance and activity between themselves and their peers.

Conclusion: This study provides insight into initiating conversations with children about structural diagnoses, such as congenital clubfoot. Recurrent themes from conversations with families provides helpful strategies for discussions between parents, children, and even providers who may be involved in their care. Orthopaedic providers may better support clubfoot families by encouraging early discussions about diagnosis and treatment to help children learn about and understand their diagnosis.