A new study published recently in Advances in Neonatal Resuscitation and Intensive Care shed light on the complex emotions parents of children with medical complexities face during and after hospitalization in a Family-Centered Care neonatal unit.
Researchers observed several emotional themes among parents, including anxiety, fear, fatigue, guilt and hope.
The qualitative study included 10 parents of CMCs admitted to the Neonatal Intensive Care Unit (NICU) of University Hospital of Modena, Italy, between October 2016 and January 2024. Researchers carried out semi-structured interviews, which focused on parents’ experiences and their communication with healthcare professionals.
The researchers acknowledged that parents of children with life-limiting illnesses experience intense stress and pain soon after their child’s birth, into childhood and beyond. They sought to explore the range of emotions parents experience and what strategies healthcare professionals can utilize to ease their burden.
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Parents reported common emotional themes, including anxiety and fear for survival, fatigue and guilt over the child’s suffering. However, alongside these difficult emotions, parents also said there is a need to leave room for hope that their child’s condition would improve. Researchers noted that this was an important point for physicians, who often focus on concrete information about the potential negative outcomes of the diagnosis, which can in turn undermine a family’s ability to maintain hope for the future.
Some providers may misinterpret parents’ need for hope as a lack of understanding regarding the severity of their child’s condition, the authors said. “However, families can simultaneously accept the devastating reality of the diagnosis while still holding on to hope for the future,” they wrote.
Parents also noted that clear, honest communication with healthcare professionals, as well as active listening, are paramount in establishing trusting relationships with providers. Parents said they value when doctors acknowledge their emotions, address their questions and concerns, and listen to and respect their perspectives.
Finally, the researchers observed differences in perceptions and reactions between mothers and fathers to their child’s medical situations. Mothers often carried the burden of daily caregiving. Fathers, at times, tended to be more optimistic that their child’s health issues would be resolved. Other times, they reported distancing themselves as a coping mechanism. These differing responses often created tension within the family.
The researchers concluded that healthcare providers should tailor communication to meet the specific needs of each family and emphasized the importance of balancing honesty about potential negative outcomes with hope.
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