Preoperative Stage

Whether the patient's diagnosis is made before birth, at birth, or after acute onset of symptoms, learning of the need for transplant is a stressful and often overwhelming experience for patients and families. A pilot study evaluating psychological distress in parents of pediatric transplant candidates indicated that mothers were significantly more likely than fathers to report greater distress compared with norms (Simons et al. 2007). Both the parents' and the child's initial reactions can be a combination of shock, denial, and anger, especially related to physical disability, loss of functioning, or restrictions in activity (e.g., dietary restrictions, reduced participation in sports or school). Family members often undergo significant alterations in their family roles to care for an ill child. Extended family and friends may be solicited to take a more active role in assisting in care for siblings, helping with patient care, and providing additional social or financial support. Siblings are directly affected and may exhibit a range of concerns regarding the health of their sibling, the separation from parents, and the increased attention that the ill sibling receives (Batte et al. 2006).

During this initial phase, the medical team often focuses on educating the family about medical issues. Team members, including physicians, surgeons, nurses, social workers, psychologists, and child life specialists, are introduced to the family, and each team member's role is explained. Parents should be encouraged to be open and honest with their child about his or her illness and may need guidance about how to do this in an age-appropriate manner. Age-appropriate developmental milestones and a child's overall psychological development are important considerations when exploring a child's understanding of the transplant process (Bagner et al. 2005).

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