Psychological Outcomes in Parents of Critically Ill Hospitalized Children
Introduction
Having a child admitted to the Pediatric Intensive Care Unit (PICU) is a challenging life experience for parents that can evoke a myriad of emotional responses marked by considerable stress and feelings of uncertainty. Much of the research conducted on parents' experiences of a child's admission to the PICU has focused on identifying potential causes of stress. Common parental stressors identified include the hospital environment, inconsistent communication, alterations in a child's appearance and parental role, and uncertainty relating to a child's illness and future prognosis (Board and Ryan-Wenger, 2003, Colville et al., 2009, Jee et al., 2012). A PICU admission warrants ongoing monitoring, along with numerous diagnostic and invasive procedures to help a child overcome an acute health change. As such, parents of children admitted to the PICU have higher levels of stress than parents of children admitted to general pediatric wards, both during their child's hospitalization (Board and Ryan-Wenger, 2002, Board, 2004), and following discharge (Rees, Gledhill, Garralda, & Nadel, 2004).
A number of studies have examined the long-term impact of a child's PICU admission on parents, reporting high levels of distress, anxiety, and depressive symptoms that persisted for months following hospital discharge (Board and Ryan-Wenger, 2002, Colville et al., 2009, Rees et al., 2004). Longitudinal studies examining parents at two (Balluffi et al., 2004) and eight months post PICU discharge (Colville et al., 2009) found that parents' level of distress during a PICU admission – and not a child's illness severity – was positively correlated with the extent of subsequent posttraumatic stress symptoms. These findings signify the importance of identifying predictors of adequate coping and addressing parents' psychological distress early during the PICU hospitalization.
Despite the clinical and social importance of assessing parents' psychological status during a child's PICU admission, research in this area remains limited. Fauman et al. (2011) measured depressive symptoms in 61 parents of chronically ill children in the first 48 h following PICU admission and found rates of mild to moderate depression of 28% and severe depression of 8%. Higher depression scores occurred in parents of children with planned PICU postoperative admissions, and an inverse correlation between time since a child's diagnosis and parents' depressive symptoms was observed. However, the study's examination of depression solely in parents of children with chronic illnesses (Fauman et al., 2011) provides little clarification of clinical implications for the wider PICU patient population.
Anxiety and depressive symptoms are thought to negatively affect comprehension of medical information and decision-making. Nonetheless, the last few decades have seen an increased focus on improving family members' participation in shared decision-making, given the widespread recommendations for enhanced patient and family-centered care practices (Davidson et al., 2007, Heyland et al., 2003). Research on family members' decision-making in both adult (Heyland et al., 2003) and pediatric intensive care settings (Madrigal et al., 2012) suggests that the majority of families do prefer some degree of shared decision-making with the medical team. However, family members also report difficulty with making decisions on behalf of loved ones and are often asked to make choices under considerable stress and uncertainty (Cohen, 2004, Hickman et al., 2012), which has the potential to contribute to further psychological distress (Davidson, Jones, & Bienvenu, 2012).
Several studies indicate parents of hospitalized children experience reduced sleep duration, increased nighttime awakening and difficulty falling asleep (Matthews et al., 2014, McCann, 2008, McLoone et al., 2013). In the general population, nighttime sleep deprivation has been shown to significantly impact cognitive and psychological function, with reports of an increase in mood disorders such as anxiety and depression (Dinges et al., 1997, Nilsson et al., 2005, Pilcher and Huffcutt, 1996). Even one night of sleep deprivation has been found to compromise advanced cognitive thinking and decision-making ability (Harrison & Horne, 1999). During their child's hospitalization, parents are required to understand complex medical information and participate in decision-making. The consequences of poor sleep quality on parents' psychological well-being and decision-making are not well-understood. However, reports of poor sleep quality in hospital suggest that parents may experience negative mood and difficulty in making decisions under such circumstances.
In summary, little is known about the prevalence of clinically important psychological difficulties such as anxiety and depression, the degree to which parents struggle with decision-making, or factors that may influence psychological distress and decision-making experiences of parents while their child is hospitalized in the PICU. Insight into which parent (e.g. gender, race, marital status, social support, sleep quantity), child (e.g. age, severity of illness, reason for admission) and environmental (e.g. distance from home, parental sleep location) factors are associated with psychological difficulty is essential for identification of parents in need of targeted intervention. Furthermore, the majority of available studies of parents with critically-ill children overlook fathers' experiences, focusing exclusively or disproportionately on mothers (Board and Ryan-Wenger, 2003, Noyes, 1999, Rees et al., 2004, Tomlinson et al., 1995).
Without an understanding of how psychological distress and decisional conflict differ across family demographics and characteristics of both expected and unexpected PICU admissions, it is difficult for health care providers to identify parents at risk for undesirable psychological consequences. Nurses' close contact with families is central to their ability to assess parents' psychological status and tailor specific interventions for effective family-centered care and support. Knowledge of various influential factors can be used when identifying supportive nursing practices aimed at promoting family health and parents' decision-making ability during a child's hospitalization.
The primary aims of this exploratory study were 1) to ascertain the prevalence of anxiety, depressive symptoms and decisional conflict in parents; and 2) to identify factors associated with parental anxiety, depressive symptoms and decisional conflict during their child's hospitalization in the PICU.
Section snippets
Methods
This paper reports on psychological outcomes which were measured as part of a larger study of sleep quantity and quality (Stremler et al., 2014) and a qualitative examination of parents' experiences while their child was hospitalized in the PICU (Stremler, Dhukai, Wong, & Parshuram, 2011).
Sample Characteristics
Of the 204 families approached, 118 (58%) parents of 91 children were enrolled and participated in the study. The majority of parents who did not want to participate cited lack of interest, or felt they were too busy or too worried about their child to participate. Two parents did not want to wear the sleep measurement equipment required and one parent's reason for refusal was unknown. Table 1, Table 2 show the demographic and clinical characteristics of participating children and parents. A
Discussion
Parents with a critically ill child are a vulnerable population with most parents experiencing moderate to severe anxiety, consistent with a study of mothers' anxiety in the first 16–30 h following admission to PICU and a study of 34 parents within 8 h of admission (Melnyk et al., 2004, Needle et al., 2009). More than half of parents demonstrated symptoms consistent with major depression, a finding that has not previously been observed, although others have reported negative mood in parents of
Conclusion
Parents with a critically ill child had poor psychological outcomes with almost a quarter of the sample experiencing severe anxiety, over half with symptoms indicative of major depression, and over a quarter with significant difficulty with decision-making. Social support, inconsistency in sleep schedule and duration, and sleep location affected psychological outcomes and are possible targets for future interventions.
Conflict of Interest
The authors state no conflict of interest regarding the publication of this article.
Funding
This work was supported by the Connaught Fund, University of Toronto and the Canadian Institutes of Health Research (CIHR) Randomized Controlled Trials Mentoring Program (MTP-70988).
Acknowledgments
We are grateful to the families who participated in this study, the staff of the critical care unit who facilitated our work, and Zahida Dhukai, Lily Wong and Julie Weston for assistance with conduct of the study.
References (60)
Father stress during a child's critical care hospitalization
Journal of Pediatric Health Care
(2004)- et al.
Long-term effects of pediatric intensive care unit hospitalization on families with young children
Heart & Lung: The Journal of Acute and Critical Care
(2002) - et al.
Stressors and stress symptoms of mothers with children in the PICU
Journal of Pediatric Nursing
(2003) - et al.
Mothers' recollections of the paediatric intensive care unit: Associations with psychopathology and views on follow up
Intensive & Critical Care Nursing
(2006) - et al.
The impact on parents of a child's admission to intensive care: Integration of qualitative findings from a cross-sectional study
Intensive & Critical Care Nursing
(2009) - et al.
Vigilance: The experience of parents staying at the bedside of hospitalized children
Journal of Pediatric Nursing
(2004) - et al.
Predictors of parent post-traumatic stress symptoms after child hospitalization on general pediatric wards: A prospective cohort study
International Journal of Nursing Studies
(2015) - et al.
Substitute decision-making: Measuring individually mediated sources of uncertainty
Patient Education and Counseling
(2001) - et al.
One night of sleep loss impairs innovative thinking and flexible decision making
Organizational Behavior and Human Decision Processes
(1999) - et al.
Decisional conflict and regret: Consequences of surrogate decision making for the chronically critically ill
Applied Nursing Research
(2012)