Families facing cystic fibrosis and the need of percutaneous gastrostomy: what role for parental stress?
Families facing cystic fibrosis and the need of percutaneous gastrostomy: what role for parental stress?

Summary/Abstract: Malnutrition is still a relatively common complication of cystic fibrosis (CF) and has been recognized as a negative prognostic factor of the disease. Therefore malnutrition has to be promptly and adequately corrected and a step wise approach has been recommended including enteral feeding via percutaneously placed gastrostomy (PEG) tube.1 In our Center less than 6% of patients in regular follow-up, including small children, developed such a severe malnutrition to become candidate to PEG placement. The aim of this study was to investigate in depth the family atmosphere of CF patients undergoing PEG, with particular regard to the stress that is generated in the relationship between parents and children. PEG requires parents at least one night awakening for pancreatic enzyme administration and often involves disturbed sleep in the parent for the child’s awakenings or because the infusion pumps is ringing. For these reasons, we assessed whether the positioning and management of PEG in children with CF imposes an increased stress on parents compared to parents who manage a child with CF without the need for PEG. The sample consisted of 13 participants, 4 of them carrying a PEG still active at the moment. The Parenting Stress Index (PSI) was administered to parents. It was found that the Total Stress level is not higher in those families that every night manages nutrition through PEG in their children. On the other hand, it is important to evaluate the amount of stressful events that a family has to face both related and unrelated to enteral feeding. This gives us an important lesson: the level of stress in a family is not only tied to that universe that we share with these patients, that is the disease, but with a pile of existential events, some of which occurred before the discovery/communication and management of the disease.

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