State of the art
Post-Traumatic Stress Disorder (PTSD) in parents of children with severe physical illnesses represents a public mental health concern that has received increasing attention over the past decade [
1‐
6]. Indeed, PTSD is associated with substantial morbidity, diminished quality of life, high levels of medical utilization, and high economic costs, besides an important burden on the child’s care [
7‐
12].
The most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychological Association, [APA], 2013) [
13] first recognized PTSD as a possible mental health sequelae to severe acute and chronic illness experiences both in patients and family members [
14].
Since its first appearance in the IIIrd edition of the DSM [
15], the PTSD classification, in fact, did not include the illness of a child as a traumatic event for the development of the disorder, but increasing attention has subsequently been paid to the topic in the literature, allowing its inclusion nowadays among traumatic events [
13,
16].
In particular, the scientific literature addressed this phenomenon in two meta-analyses, one in 2009
17 and one published in February 2019 [
17]. The 2009 meta-analysis included sixteen studies, showing pooled PTSD prevalence rates of 19.6% in mothers, 11.6% in fathers, and 22.8% in parents. Furthermore, the pooled prevalence ratio for the four studies reporting comparison healthy groups was 4.2. Notably, in families of children with cancer, the proportion of PTSD was about 4 times higher than it was in families with healthy children [
18].
These results were what stimulated the great increase of observational studies on this topic and, together with the numerous studies also carried out on other populations of traumatized subjects [
19‐
23], contributed to determining the changes observed in the DSM-5 regarding the traumatic event characteristics. In the DSM-5 criterion A (Trauma), more attention was given to the relevance of indirect exposure to stressor events experienced by a loved one, stating that exposure to an illness that involves the actual or threatened death of a child could be a traumatic event that can lead to PTSD [
13].
The DSM-5 specifies the need for the event to be violent or accidental (sudden medical catastrophe), focalizing more on the urgency and abruptness of the perceived threat rather than on its severity. This concept modifies and narrows the possibilities with respect to the previous DSM-IV-TR [
16] that only required learning that one’s child had a life-threatening disease. In line with the previous DSM-IV indications, studies on this issue were mainly on cancer diseases and, to a lesser extent, on traumatic accidents. It has only been in the last few years that other diseases have emerged [
24‐
29].
In order to advance the scientific literature on parental PTSD of the last few years, the 2019 meta-analysis could rely on around ten papers providing epidemiologically more sound results [
17].
The authors first screened and highlighted 290 studies on this topic in which the most represented disease was still cancer with 159 papers, then 36 studies were on burns, 17 on diabetes, 12 heart disease, 5 epilepsy, 4 asthma, cleft lip and/or palate and phenylketonuria, 2 on HIV infection, sickle-cell disease, spina bifida, and food allergy; finally, 41 studies focussed on other infectious diseases, but at least a quarter of them were of poor quality.
Surprisingly, the results evidenced parents’ PTSD rates of 18.9%, which is perfectly in line with the results of Cabizuca et al.. Nevertheless, 14,891 subjects out of the total sample of 30,068 in Pinquart’s study was represented by parents of children with cancer, generalizing this epidemiological data at risk of bias, and contributing to the difficulty in addressing real epidemiological PTSD rates of parents of sick children in general [
17].
However, it can be assumed that the prevalence rates of PTSD reported in this sub-population of traumatized individuals are higher than those reported by epidemiological studies in the general population, with prevalence rates as high as 6.8% in the United States [
30] and similar rates reported in European cohorts [
31,
32].
Notably, percentages of traumatic stress symptoms, while not meeting the diagnostic criteria for PTSD, were particularly evidenced in parents of children with epilepsy, diabetes, sickle cell disease, heart disease, and cancer. Contrary to expectations, parents of children with a fatal disease, such as incurable cancer or HIV infection/AIDS, did not report the highest levels of post-traumatic stress symptoms, indicating that the objective features of the traumatic event may be less important for the development of traumatic stress symptoms than the individual’s subjective experience of the event. Pinquart’s results also confirmed that the common literature recognized pre-traumatic risk factors for PTSD such as female gender and low social resources, as well the general decline of the disease over time [
17].
Considering that the recent outbreak of the COVID-19 pandemic will dramatically lead to a surge of post-traumatic stress symptoms in different groups of people in the future and some evidence for this has already emerged [
33], it is important to ensure the most up-to-date evidence on PTSD in all fields of research. In addition to this, even if symptoms of COVID-19 disease are usually mild in children, the high risk of infectiousness for other family members may worsen the emotional impact and the traumatic burden for parents who have to deal with with the COVID-19 infection of their children [
34].
Objectives
The present update will summarize last year’s literature published since the 2019 meta-analysis [
17] on PTSD and post-traumatic stress symptoms related to having a child with severe illness. A particular focus on possible gender differences between mothers and fathers will be also addressed.
Considering the fact that over a 10-year period, the articles published on this subject showed a tenfold increase, we assumed that a significant number of articles may have been published in the last year.
The main aim in exploring these further studies is to aspire to compiling real epidemiological data on parent’s PTSD with regard to ill children. A further aim is to observe if they address the literature gaps highlighted in previous findings: the majority of the studies were on cancer, included predominantly maternal samples and a very small number had a control group.
With this aim in mind, we have selected 4 main areas of interests, in particular: parents’ PTSD rates, disease type, number of fathers compared to mothers and control groups.
Our goal is to try to understand if research in this field has been refined over time with the long-term intent to help parents better deal with the psychological challenges of having a child infected with SARS-CoV-2 (COVID-19).