by Katelyn Malvese
One of the greatest flaws in the pediatric healthcare system is the absence of family-centered, integrated care, especially in the context of palliative and intensive care. Having a hospitalized child facing end-of-life and/or intensive care is a grueling, critical time during which caregivers need support. This population is at a greater risk for mental health concerns and crises, including but not limited to anxiety, depression, post-traumatic stress disorder, and post-traumatic symptoms (Ghavi et al., 2022; Salley et al., 2023). As a former child in this population, I can attest to the need for greater support of pediatric patients and their families in hospital settings.
At fourteen, I lay in an ICU bed, recovering from the physical and emotional trauma I endured through multiple resuscitation attempts. While I had every medical gadget, specialist, and medication on-call, no doctor asked me if I was okay in any capacity (beyond physical) which depersonalized our relationships. There was no market for support groups, mental health counselors, or basic coping techniques. For the longest time, I tried to convince myself I was the only one that had this experience, but after immersing myself into a network of youth and families with complex medical circumstances, I saw how the pediatric healthcare system has failed so many.
My parents watched me with terrified eyes as I seized and nearly lost my life, left to sign consent forms and never receive hospital-referred support. In this moment, the family-centered approach was abandoned, and my parents were left feeling helpless in their parental role and helpless in a medical setting. Meyer et al. (2002) interviewed caregivers of children in the pediatric ICU to gain perspective on the end-of-life care their child and family received. One mother warned, “Do not fall into that detached type of working. Parents need to feel that people really care, not that it’s just a job. The people at the hospital who allowed themselves to have genuine feelings helped me the most.” Clearly, the current model of care is not working, with interactions often feeling more robotic with each set of standard screening questions and timed visits which often are limited to fewer than five face-to-face minutes to maximize productivity.
It often feels like healthcare has become increasingly depersonalized and that healthcare providers are being denied opportunities to provide the quality, personalized care and treatment they are capable of. The current system of most American pediatric hospitals needs to transform into an integrated, family-centered healthcare model which values holistic treatment and compassion towards both families and employees. Pediatric medicine must work towards an integrated, family-centered model of care where, ideally, the hospital could provide on-site psychosocial care and support for caregivers to overcome common barriers to accessing mental health support during a child’s hospitalization (i.e., connecting with volunteers, Child Life, or other staff to supervise during interventions). Professionals need to bring back compassion, as compassion is at the root of quality care, the center of change, and the future integrated, family-centered pediatric hospital systems.
References
Ghavi, A., Hassankhani, H., Powers, K., Arshadi-Bostanabad, M., Namdar-Areshtanab, H., & Heidarzadeh, M. (2022). Parental support needs during pediatric resuscitation: A systematic review. International Emergency Nursing, 63, 101173.
Meyer, E. C., Burns, J. P., Griffith, J. L., & Truog, R. D. (2002). Parental perspectives on end-of-life care in the pediatric intensive care unit. Critical care medicine, 30(1), 226-231.
Salley, C. G., Axelrad, M., Fischer, E., & Steuer, K. B. (2023). But parents need help! Pathways to caregiver mental health care in pediatric hospital settings. Palliative & Supportive Care, 21(2), 347-353.
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