Here are the key takeaways and actionable steps based on the study:
1. Integrated Support
Parents found that MDT clinics offered more comprehensive and coordinated care compared to traditional single-specialist appointments. This approach reduces the need for multiple visits, thus minimizing disruption to the child's routine and schooling. Practitioners should consider advocating for or participating in MDT clinics to provide a "one-stop-shop" for their patients.
2. Access to Health Professionals
Parents appreciated the diverse expertise available at MDT clinics, including endocrinologists, dietitians, psychologists, and social workers. Adding speech and language therapists, physiotherapists, and creative therapists could further enhance these services. Encouraging schools to host such clinics can also bridge the gap for families who lack access to specialized care.
3. Behavioral Support
Behavioral issues, often triggered by food-related challenges, are a significant concern for families. MDT clinics that include dietitians and psychologists can offer tailored strategies to manage these behaviors effectively. Additionally, providing support for developmental milestones, such as transitioning to independent living, can empower families to better navigate these changes.
4. Social and Financial Support
Incorporating social workers into the MDT clinic was seen as invaluable by parents. Social workers can help families access respite care, extracurricular activities, and financial support, which are often underutilized due to lack of awareness or resources.
5. Community Connections
Parents valued the opportunity to connect with other families facing similar challenges. MDT clinics can facilitate these connections, either through in-person meetings or virtual support groups. Collaboration with PWS-specific charities can also provide families with additional resources and support.
Implementing these findings can create a more supportive and effective care environment for children with PWS. Practitioners are encouraged to consider the MDT approach and collaborate with other specialists to offer integrated, holistic care.
To read the original research paper, please follow this link: Qualitative Parental Perceptions of a Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome
