A growing population of children who survive admission to PICU develop psychological problems (as do their parents). Diagnoses include posttraumatic stress disorder (PTSD), depression, and anxiety, which can cause distress and functional impairment and impede physical recovery. The aim of this review is to summarize the available literature on intervention studies aimed at reducing psychopathology in children and their parents after discharge from PICU.
The majority of children now make a good physical recovery following PICU admission (1). As more children survive life-threatening acute illness, it has become evident that psychiatric morbidity is increased in this population of survivors. The only study directly comparing psychiatric outcome in children and parents following PICU admission with those discharged from a general pediatric ward showed that 21% (compared with 0%) of children and 27% (compared with 7%) of parents, respectively, were suffering with PTSD symptoms at 6–12 months after discharge (2). There has been growing interest in this area; the most commonly reported outcomes are those of PTSD, depression, and anxiety (3, 4). Other sequelae have also been reported, including externalizing disorders such as hyperactivity and conduct disorder (5), as well as adjustment disorder, tic disorder, and transient psychotic disorder (4). A British study found that a significant minority of parents and children had persistent posttraumatic stress symptoms 12 months after discharge (3).
Psychological morbidity is also associated with increased medical help-seeking. In the absence of increased objective measures of physical pathology, more children were readmitted to hospital with physical health concerns 6–12 months after PICU admission than following discharge from a general pediatric ward (2). This may be because children discharged from PICU more often become acutely ill again compared with a pediatric ward group, but alternatively parents of PICU admitted children may have a lower threshold for returning their children to hospital if new symptoms emerge, and hospital staff may have a lower threshold for readmission in view of the previous history.
Psychopathology has been identified in both children and parents (including fathers) after discharge from PICU and general pediatric wards. Prevalence of PTSD is higher in mothers (23%) than fathers (11%) at 12 months (5). A recent study revealed that high parental posttraumatic stress symptoms after discharge from a pediatric ward were associated with poorer subsequent recovery from posttraumatic stress symptoms in the child at 1 year (6). Furthermore, child psychopathology at 1 year after discharge was found to have stronger correlations with maternal (rather than paternal) PTSD symptoms (5). Changes in parenting style after discharge of a child from PICU have been demonstrated; some mothers became more protective and more strict, whereas others made more allowances for their child’s behavior (5). Changes in parental boundary-setting may contribute to the development and/or maintenance of behavioral difficulties in the child. Parenting changes may be mediated by the presence of parental psychopathology, making parents less emotionally available to their child in terms of containing and helping them to process their experience (6). These findings suggest that any intervention needs to target parents as well as children, and fathers as well as mothers.
Potentially modifiable risk factors in the development of psychopathology have been identified, such as the subjective perception of how life-threatening the illness was (7). The subjective level of distress experienced during PICU admission may also be important, as parents with higher levels of baseline stress may benefit more from interventions (8). Parenting changes after PICU admission (such as being less strict and becoming more protective about their child’s health) correlated strongly with higher scores on psychopathology screening questionnaires at 12 months (5). Interventions may benefit from targeting and aiming to reduce these risk factors while increasing protective factors—for example, mothers who talked about their feelings at the time of admission had significantly lower posttraumatic stress scores at 8 months (9).
Despite recognition of the prevalence of and risk factors for the development of psychopathology in children and parents after PICU admission, we are unaware of any systematic review to date focusing on intervention studies to address this. Given the current pressures in the health service (in particular mental health), an intervention to reduce psychopathology in this context could be particularly beneficial for both patients and services. In the next section of the article, the literature on intervention studies in this area will be summarized and discussed.
MATERIALS AND METHODS
The following electronic databases were searched one by one (to optimize yield) via Athens: EMBASE, CINAHL, MEDLINE, and PSYCHinfo. The search terms below were used:
1. intervent* OR prevent*
2. PICU OR intensive care OR ITU OR ICU OR critical care
3. (Psych* AND [morbidity OR problem*]) OR mental illness OR PTSD OR posttraumatic stress OR anxiety OR depression
4. 1 AND 2 AND 3 combined.
Limits were applied to the results:
1. English language and
2. Age between 0 and 18.
A total of 5,062 articles were identified in the initial search, and with limits applied, this number was reduced to 868. Duplicates (115) were identified and removed, leaving 753 articles. These were then hand searched via abstracts initially, and articles meeting criteria for inclusion (see below) were selected. Of these, three intervention studies were identified. In addition to searching electronic databases, there was also a hand search of articles from relevant article reference lists, and experts in the field were contacted to identify any unpublished studies. Three additional studies were found in this way (Fig. 1).
Studies were “included” if they aimed to evaluate an intervention in children admitted to PICU (and their families) to reduce psychiatric morbidity following discharge. Studies were “excluded” if the study population age was adult (above 18) or if the study population was drawn from a neonatal ICU (NICU). Studies and articles that did not evaluate a specific intervention were also excluded.
Of the intervention studies identified, there were three published randomized controlled trials (RCTs) (10–12) and three exploratory feasibility studies (13–15). A table summarizing the six studies identified and discussed in this article can be found in Supplemental Table 1 (Supplemental Digital Content 1, http://links.lww.com/PCC/A393).
Review of these six studies indicates some common and some unique features (components) incorporated in these interventions. These are summarized in Table 1 and could be considered as the likely “active ingredients” in effecting the therapeutic impact of interventions to reduce psychopathology in children and parents after discharge.
Based on what we already know about the risk factors for development of psychopathology after discharge from PICU, we can examine each of the studies to establish which of the above components the study intervention targeted.
Half of the studies timed the intervention as a follow-up clinic after PICU discharge (12–14) although the Creating Opportunities for Parent Empowerment (COPE) study began the intervention during the hospital admission (11).
Psychoeducation was a key component; in most cases, this was achieved through a single discussion with the family, supported by written information (10, 13, 15). The COPE study differed, using manualized audiotapes, written material and a workbook over three time points (to enhance retention of information) (11). Information was given on the anticipated range of behaviors and emotions that children typically display during and after hospitalization, and also therapeutic play techniques to help the child to process what was happening.
The COPE study intervention explicitly provided emotional support and actively empowered mothers by equipping them with the necessary skills to reduce the risk of psychopathology developing in both themselves and their children. Practical parenting support and advice was given with this aim (11), whereas other studies explicitly provided both parenting and emotional support for parents (13, 15).
Most studies delivered the intervention to all families discharged from PICU. One of these (12) found that despite all families being offered the intervention, it was those parents with higher baseline stress scores who chose to take it up. Their intervention was associated with reduced future psychopathology in this particular group of parents, suggesting that screening for those at greatest risk could be beneficial, a finding replicated in a more recent study (15). Samuel et al (14) have recently repeated a similar follow-up study but this time targeting the intervention only at those parents at high risk of PTSD. Significantly, lower scores were found for depression at 7 months follow-up (although there was no significant difference for PTSD or anxiety).
Targeting the Mechanism of PTSD Development
Three studies demonstrate this (10, 11, 15) by reducing the perception of life-threatening danger in the processing of the “traumatic” experience. For example, the COPE study provides a practical framework for parents to help their child to process the traumatic experience in a developmentally appropriate way including use of puppet play, therapeutic medical play, and a social story (11). One common theme in most interventions is that they address a key maintaining factor in anxiety, that of avoidance. For example, one study encouraged explicitly discussing the experience of the admission in order to facilitate normal processing of memories and prevent avoidance (13). The same study also advised parents about graded exposure work with children who may be avoiding anxiety associated with the admission. Follow-up appointments themselves may be considered as exposure to the anxiety of being in the hospital.
The studies indicate that it is feasible to deliver interventions while on the ward (resulting in better uptake than follow-up clinics). However, for example, in the COPE study, due to over 50% attrition by 12 months, the reported benefits may have been overestimated (11).
Two studies reported effect sizes for their outcomes; the COPE study reported a medium effect size of 0.49 for reduction of parental PTSD symptoms and 0.62 for reduction of externalizing behaviors in children (11). The recent follow-up study by Samuel et al (14) reported only small effect sizes for reduction of parental anxiety (0.21) and depression (0.25).
The few studies in this area suggest a possible small positive effect of interventions to reduce psychopathology after PICU discharge. While some interventions evaluated were feasibility or pilot studies, half were RCTs, which showed demonstrable (albeit small) benefits on outcomes including improved functioning and emotional well-being in parents, and fewer child adjustment problems. This is promising although large effects have not been demonstrated and the studies have had small sample sizes and high attrition. There were many common ingredients to the interventions used, such as psychoeducation, support during and after admission, and specific interventions to target the development of PTSD symptoms.
While there is no evidence for universal debriefing (16, 17), the interventions in these studies differ from debriefing in the following key ways: psychoeducation in these studies consisted of generic information and advice about the possible psychological impact of PICU admission, rather than tailored discussion specific to the individual traumatic experience of the family members. The psychoeducation also does not focus on processing memories or emotions, but rather equips the families with what they might expect in the future and suggestions about how to manage this.
Despite widespread acknowledgment in the literature that there is an increased risk of psychopathology following PICU admission, there are a paucity of intervention studies in the field. One explanation for this may be that very few centers are configured to enable this sort of study, which requires the hospital to be a major center in order to have a PICU; there also need to be good links between pediatrics and child mental health specialists and parents need to agree to participate in a study when their child has a life-threatening illness. It is also possible that further intervention studies have been undertaken but that they have not been published. This may be because they did not demonstrate any significant effect, leading to publication bias. There may also have been other studies not written in the English language, which did not meet inclusion criteria.
What Have We Learnt From the Studies So Far?
The question arises: what have we learnt so far from the completed studies that can inform planning for future research? Can we focus on specific active ingredients of the interventions described in this review to develop improved interventions? In terms of developing effective interventions, there are a few key difficulties emerging from the studies published so far. One problem is the low take-up of interventions (in particular when delivered after discharge). Another is the decision about whether to use a universal intervention or target parents at risk. Likewise, it is unclear whether interventions are most helpfully targeted specifically at PTSD symptoms or toward overall psychopathology.
In terms of practical design, each of the two principal intervention strategies proposed (follow-up study and preventative educational program) has practical advantages and disadvantages. Follow-up studies are more staff intensive, requiring clinical and administrative time. However, this may be offset by the possibility of specifically targeting an intervention at high-risk groups. By contrast, preventative educational programs by definition cannot be targeted as they are aimed at the entire PICU population. In such preventative programs, the primary cost would be that of the materials (audiotapes, written material, workbooks) rather than of clinical time.
One way to tackle the problem of low take-up of the intervention is to start the intervention during the admission rather than at a follow-up appointment (15). Information leaflets/audio files and videos are easier to translate into different languages and are more cost effective than using individual interpreters for follow-up clinics. The clinician can access more families by this method although families may engage better if psychoeducation is personally delivered by clinicians rather than via generic written/audio information (15).
Follow-up interview interventions offered universally to all parents resulted in too small a take-up to be viable in the studies undertaken but may help a small proportion of mothers with problems. However, since the results are somewhat contradictory, it may be better for general practitioners or local pediatricians to screen for those at greatest risk of developing psychopathology and refer on for treatment if indicated. A universally feasible intervention could be a psychoeducation booklet supported by telephone follow-up. This seems to be helpful for mothers at risk (15), but it is unclear whether it would benefit those mothers not at risk.
The case for targeted intervention toward the population at greatest risk of developing psychopathology is demonstrated in three studies (12, 14, 15), in which those parents with highest baseline stress benefitted from the intervention. High baseline stress might be considered as an indicator of greater risk of psychopathology; interventions could be targeted at this group.
In order to translate the interventions from research to clinical practice, it is possible (e.g.,) that telephone follow-up rather than face to face clinics might yield better take-up (14, 15). Engagement may be improved by capturing families who are unable or unwilling to travel and it may feel easier to have a telephone intervention, read leaflets, or watch a video than to go to the hospital which is associated with the trauma of admission. It would also be cheaper as it would require less organization and potentially fewer clinicians. From the limited literature available, ward-based universal psychoeducation and targeted phone follow-up interventions may be the most promising.
This review itself had limitations—the search was limited to only those articles in the English language and those that were accessible. It was not registered as a systematic review and did not go into detail in assessing risk of bias in individual studies.
Of the studies included in this review, there were many limitations common to all of them. One such limitation was that of small sample size, which may reduce the power of the study to detect a difference between the intervention and control group, even if one exists. In addition to this, each study had significant attrition—for example, 58.2% attrition in the COPE study (11). Attrition in a study can lead to selection bias; one possibility is that those who dropped out had greater psychopathology, so the reported benefit of the intervention may be an underestimate. A notable limitation of follow-up studies is that of low uptake (25%  and 33% ). Families already exhibiting PTSD symptoms may not attend the clinic due to avoidance of a place reminding them of the traumatic experience. Many studies covered different age ranges and excluded those who did not speak sufficient English to complete the outcome measures, which limits the generalizability of the results (3). All of the studies used self-report outcome measures which assess symptom frequency and severity but do not yield an objective clinical psychiatric diagnosis (limiting the utility of the results). A limitation in those studies with short follow-up periods (or none) was that they may have missed delayed onset psychopathology. The COPE study (11) explicitly excluded fathers from their target population, and very few fathers participated even when eligible for other studies (12). However, we know that there is a close link between parental psychopathology and that in their children (5). Therefore, the value of including fathers in intervention studies is important to investigate.
There is growing interest in the concept of a postintensive care syndrome, a single term used to describe new or worsening impairments in physical, cognitive, or mental health after critical illness which persists after discharge, affecting the patient and/or family members (18); although interest in this has largely focused on the adult ICU literature, it seems equally relevant to the pediatric population.
Increased psychological morbidity in families of children discharged from PICU, together with the potential to reduce this psychopathology, as shown in these few available studies, support the need for further research. In addition to the promising interventions described, which could be further developed and evaluated in larger RCTs, different interventions have been evaluated in adult ICU and NICUs, which could also be extrapolated to the pediatric population. Prospective diaries completed by healthcare staff and/or family members on ICUs with the aim of helping patients and their families develop a coherent narrative of their experience were found to be useful in reducing PTSD (19), but the value of diaries in promoting psychological recovery was not supported by a subsequent Cochrane review (20). Other psychological interventions have been evaluated in adult ICU survivors including telephone delivered mindfulness training (21), counseling, and stress management (22) which suggest improvement in anxiety, depression, and posttraumatic stress symptom scores (21, 22).
In the NICU population, a similar intervention to the COPE study described earlier has been evaluated, showing improvement in parental mental health outcomes, enhanced parent-infant interactions, and reduced length of hospital stay (23). Other intervention studies have described structured psychological interventions with ongoing psychological support (24), an intervention aimed at helping mothers to reduce anxiety through recognizing it and using anxiety reduction strategies together with enhancing their ability to interact sensitively with their baby (25), a psychological support group intervention (26) and interventions based on trauma focused cognitive behavioral therapy (27), which all led to improvements in parental mental health outcomes.
No intervention studies to date in the pediatric population have focused on siblings, but they may also be affected (28, 29). It may therefore be helpful to include siblings in future studies (as well as fathers to a greater extent). This may be of additional benefit in reducing psychopathology within the family.
This review has some implications for clinicians and policymakers. Families with children in PICU may benefit from psychoeducation, emotional, and parenting support. Interventions demonstrating a small positive effect on outcome for families may reduce overall costs in terms of savings from future potential mental health/physical health presentations.
More well-planned and focused intervention studies would further our understanding in this field and increase the chances of finding helpful interventions for the minority of families who suffer substantial psychiatric morbidity following PICU discharge.
We would like to thank Professor Elena Garralda for helpful comments on earlier drafts.
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child; critical care; intervention study; mental health; parents