Abstract and Introduction
Objective: Serious childhood illness is associated with significant parent psychological distress. This study aimed to (a) document acute and posttraumatic stress symptoms (PTSS) in parents of children with various life-threatening illnesses; (b) identify trajectory patterns of parental PTSS and recovery over 18 months; (c) determine psychosocial, demographic, and illness factors associated with trajectory group membership.
Methods: In total, 159 parents (115 mothers, 44 fathers) from 122 families participated in a prospective, longitudinal study that assessed parent psychological responses across four time points—at diagnosis, and 3, 6, and 18 months later. Children were admitted to the Cardiology, Oncology, and Pediatric Intensive Care Departments in a tertiary pediatric hospital. The primary outcome was parent PTSS.
Results: Three distinct parent recovery profiles were identified—"Resilient," "Recovery," and "Chronic." The "Resilient" class (33%) showed low distress responses across the trajectory period, whereas the "Recovery" class (52%) showed significantly higher levels of distress at the time of diagnosis that gradually declined over the first months following their child's illness. Both of these classes nevertheless remained within the normative range throughout. In contrast, the "Chronic" class (13%) was consistently high in severity, remaining within the clinical range across the entire period. Psychosocial factors such as mood, anxiety, and emotional responses predicted group membership, whereas demographic and illness factors did not.
Conclusions: Parents show considerable resilience in the face of children's life-threatening illnesses. Early assessment of parent psychosocial factors may aid identification of those who would benefit from early intervention.
Having a child hospitalized because of a life-threatening illness or injury can lead to significant psychological distress in parents (Bronner et al., 2010; Landolt, Ystrom, Sennhauser, Gnehm, & Vollrath, 2012; Le Brocque, Hendrikz, & Kenardy, 2010; Muscara, McCarthy, et al., 2015; Woolf, Muscara, Anderson, & McCarthy, 2016). While high levels of distress in the acute period are predictive of later difficulties (Bryant, Creamer, O'donnell, Silove, & McFarlane, 2012; McCarthy, Ashley, Lee, & Anderson, 2012), our understanding of which parents are at risk of long-term traumatic distress is limited. The Integrative Model of Pediatric Medical Traumatic Stress (Kazak et al., 2006; Price, Kassam-Adams, Alderfer, Christofferson, & Kazak, 2016) conceptualizes parent- and family-level adaptation to a child diagnosis or hospital admission as progressing through three phases: acute reaction to the medical event; evolving traumatic stress response; and longer-term traumatic stress response. In this model, psychosocial, demographic, and medical factors are proposed as potential factors contributing to the emergence and persistence of posttraumatic stress symptoms (PTSS).
A stress-coping model proposed by Bonanno (2004) posits four potential distress–recovery trajectories following the death of a loved one: a resilient trajectory characterized by low initial levels of distress, which stay low over time; a delayed trajectory where distress increases after starting low; a chronic trajectory where distress is initially high and remains high; and a recovery trajectory where initially high levels of distress decline over time. This model has been extrapolated to other potentially traumatic events, including adolescents and young adults diagnosed with cancer (Zebrack et al., 2014), parents of children diagnosed with cancer (Dolgin et al., 2007; Steele, Dreyer, & Phipps, 2004), and parents of injured children (Le Brocque et al., 2010). Distinct distress–recovery trajectories were identified for patient/parents in these studies, with the majority reporting improvement in levels of distress over the first months post diagnosis, and a smaller subset displaying more chronic distress patterns. Longitudinal studies of parents' distress–recovery trajectories are rare and mostly confined to single illness samples, precluding examination of whether the nature of the child's illness confers different risks on distress–recovery trajectories.
We address this significant gap in a prospective study of parents of children with various life-threatening illnesses. Specifically, the study aimed to (a) document acute and long-term PTSS in parents at four time points: acutely following diagnosis/hospitalization, and then 3, 6, and 18 months later; (b) identify specific trajectory patterns of parental PTSS and recovery across this 18 month period; and c) determine psychosocial, demographic, and illness factors associated with specific recovery trajectories. We hypothesized that (i) distinct differences in PTSS severity and recovery trajectories over time would be identified and (ii) psychosocial variables (such as parent mental health and subjective appraisals of the illness) would be more strongly associated with parent distress trajectories compared with demographic and objective illness factors.
J Pediatr Psychol. 2018;43(10):1072-1082. © 2018 Oxford University Press
Copyright 2007 Society of Pediatric Psychology. Published by Oxford University Press. All rights reserved.