On May 8th, ALYN Hospital's PARC: The Helmsley Pediatric and Adolescent Rehabilitation Research Center hosted a webinar titled "Children and Families as Partners in Clinical Care and Rehabilitation Research: Advocacy, Agency, Impediment" as part of PARC's monthly webinar series.
The webinar, moderated by Dr. Naomi Gefen, explored crucial themes about the role of families and patients in rehabilitation and healthcare decision-making, with discussions such as:
1. Transition from "Family-Centered" to "Family-Led" Rehabilitation:
Dr. Maurit Beeri, Director General of ALYN Hospital, introduced the idea of shifting from "family-centered" to "family-led" rehabilitation. This concept encourages giving families more control and a definitive leadership role in the rehabilitation process of their members, particularly children. This shift aims to empower families, recognizing their intimate knowledge of the patient’s needs and their unique perspective, which is often underutilized in traditional rehabilitation models.
2. Empowering Voices in Clinical Care:
Various speakers, including Tali Kaplan and Dr. Naomi Gefen, highlighted the importance of involving children and their families not just as participants but as active decision-makers in clinical care and research. They discussed the use of participatory design in developing tools and strategies that enhance the functionality of individuals with conditions like Duchenne muscular dystrophy. The emphasis was on creating partnerships with patients and families to ensure that the interventions are more tailored and effective.
3. Advocacy and Inclusive Studies:
The discussion also covered the significance of advocacy in clinical settings and research. Dr. Lori Rosenberg and James Haftel shared insights from an inclusive study aimed at transitioning adults with severe cerebral palsy from assisted to independent living. Such studies show the potential of inclusive research designs that not only address the needs but also harness the insights of those directly affected by these conditions.
4. Incorporating Pediatric and Caregiver Voices in Healthcare Decisions:
Dr. Leanne West spoke about the vital role of pediatric patients and caregivers in healthcare, clinical trials, and research. She emphasized that listening to these voices can lead to more effective healthcare solutions and innovations. This approach not only improves the relevance and acceptability of clinical interventions but also enhances ethical dimensions by respecting the views and experiences of those involved.
5. General Discussion and Future Directions:
In the concluding session moderated by Dr. Naomi Gefen, there was a consensus on the need for more systemic changes in how healthcare providers and researchers engage with families and pediatric patients. The discussion pointed towards a future where healthcare is more collaborative, and where patients and families are not just at the center, but in the lead of healthcare planning and decision-making.
Overall, the webinar underscored the importance of shifting towards more inclusive and participatory models in health care and rehabilitation, emphasizing that such changes are necessary for creating more personalized and effective healthcare systems.