Psychosocial outcomes in mothers and fathers of chronic critically ill children: a national prospective longitudinal study

Purpose Hospitalization of a child in PICU affects the psychological health and functioning of their family. In case of prolonged or repeated hospitalizations, sources of stress and family needs evolve, which leads to new challenges for families. To date, little is known about changes in the health of chronic critically ill (CCI) children’s family. We aimed to identify and compare psychosocial outcomes of mothers and fathers of CCI children overtime and the associated factors of better family functioning. Methods This national prospective longitudinal study was conducted in eight paediatric intensive care units in Switzerland. Outcome measures included perceived stress, PICU sources of stress, and family functioning using validated standard questionnaires. Family members with a CCI child completed self-reported questionnaires during PICU hospitalization, at discharge and 1 month later. Results A total of 199 mothers and fathers were included. Our results show high levels of stress experienced by parents throughout and after the hospitalization. Sources of stress are mainly related to child appearance and emotional responses and parental role alteration. Family functioning is low throughout the hospitalization and significantly decreased after 30 days of hospitalization ( p = 0.002). Mothers experience higher physical and emotional family dysfunction than fathers after PICU discharge ( p = 0.05). Family dysfunction is associated with pre-existing low child’s quality of life. Conclusion Our study highlights the importance of reducing the negative impact of PICU stay on parents’ psychosocial outcomes, through early emotional parental support, and appropriate response to their individual needs throughout and after PICU hospitalization.