Article Text
Abstract
Aim Cerebral palsy (CP) is the predominant cause of childhood onset lifelong physical disability. Maximizing function through a multidisciplinary approach is the goal of clinical therapy, which can be challenging. Studies have shown that supporting a child with CP may expose caregivers to significant burden. This service evaluation aims to enhance care for children with cerebral palsy at the general pediatric department by identifying service gaps, providing solutions, and empowering caregivers, aligning with NICE clinical guidance.
Material and Method The project included three members from pediatric team. A survey was created using Microsoft Forms. Forty caregivers of patients with a diagnosis of CP were selected randomly from the pediatric department’s patient list over a 6-month period. The survey was conducted through semi-structured interviews over the phone or during clinic visits with caregivers’ consent. The collected data was recorded in an Excel sheet, and subsequent data analysis was performed.
Results Numerous patients experienced clinical symptoms, including pain, seizures, drooling, swallowing problems, vomiting, constipation, and disturbed sleep. Unfortunately, a multidisciplinary team, capable of addressing these issues, was not involved in their care. The majority expressed concerns about speech, vision, personal care, mobility, hand function, equipment availability, and learning issues. Additionally, 42.5% reported psychological concerns and 35% experienced sensory insensitivities. Hip surveillance was neglected in 58%. Regarding functional abilities, over 50% had concerns related to mobility, hand function and equipment availability. Rehabilitation, including physiotherapy, occupational therapy, and speech therapy raised concerns for the most. Psychiatric and dietary concerns were less common. Financial issues were reported by 50% of families, and 80% of patients weren’t attending a learning center due to financial reasons.
Conclusions CP patients have complex needs, emphasizing the necessity for prompt referrals for multidisciplinary assessments and a well-defined care pathway, including neurodisability services. Caregivers should also be actively involved in the care process to ensure holistic support.