Most pediatric hospitals subscribe to a family-centered care (FCC) approach where healthcare providers recognize the importance of family in a patient’s life and treatment plan. Yet research confirms what the Elizabeth A. MacDonald Charitable Foundation (eamf) already knows from being direct services providers in the field since 2009 - the needs of siblings are not addressed in medical centers or in current medical practice despite subscribing to family-centered care. Doctors have full caseloads of sick patients. Social workers advocate for the patient and focus resources toward parents. The primary focus of Child Life Specialists is also on the patient, leaving siblings at risk for short-term and long-term psychosocial difficulties.
eamf’s advocacy and policy work is ongoing and long-term. Institutional systems and practices need to be changed at the policy level. This includes reconsidering payment and reimbursement policies such as the additional time it will take the medical team to provide the appropriate family support and treatments. According to Dennis Kuo et al “the upfront costs of reimbursing FCC practices may lead to more efficient and streamlined health care use overall for individual practices, hospitals, and health care systems.” It is our duty and responsibility to have these discussions with hospital administrators and legislators to ensure that siblings are included in the family-centered care model in pediatric care settings.
Fanos, J.H., PhD, Fahrner, K. PhD, Jelveh, M., PhD, King, R., MA and Tejeda, D., MD, The Sibling Center: A Pilot Program for Siblings of Children and Adolescents with a Serious Medical Condition, Journal of Pediatrics, 2004.
Kuo, D., Houtrow, A.J., Arango, P., Kuhlthau, K.A., Simmons, J.M., Neff, J.M., Family-Centered Care: Current Applications and Future Directions in Pediatric Health Care, Maternal Child Health Journal, Volume 16, 297–305, 2011.