Parents under siege: the psychological impact of COVID-19 outbreak on children’s caregivers

DOI: https://doi.org/10.4414/SMW.2021.w30012

Introduction

Historically, infectious disease outbreaks have a significant psychosocial impact on society [1]. Any readily and rapidly transmitted agent, especially when associated with increased mortality, may precipitate negative psychological responses ranging from fear, denial and frustration to helplessness and acceptance [2]. Although these reactions are shaped at the individual subconscious level, they eventually diffuse in the community and trigger “cyclical fear” phenomena [1, 2], which may even facilitate the spread of the disease [1, 2].

Health authorities have already warned about the psychological implications of corona virus disease 2019 (COVID-19) [3]. The high mortality rate, the unprecedented measures taken to control the outbreak and the pervasive uncertainty around its outcome may cause significant psychological distress and increase the risk of relevant mental disorders [1, 2]. In this context, older adults, people with underlying health conditions, healthcare workers, and children and adolescents have been identified as the most vulnerable and special recommendations have been issued [3, 4].

Parenting stress represents an important psychosocial variable that is often unrecognised and underestimated [5]. Although it primarily affects the parents, it may easily diffuse to their social and work environment with significant consequences [5]; this is particularly true for caregivers of children with underlying diseases [6]. Arguably, healthy children are less likely to be severely affected by COVID-19 [7]; however, data on paediatric populations with chronic or serious underlying disorders remain scant and controversial [7], thus potentially increasing the psychological distress of their caregivers during the pandemic.

The aim of this study was to investigate the psychological burden of parents during the COVID-19 epidemic in Greece. We hypothesised that the parents, especially those caring for children with underlying disorders, may experience increased stress levels and thus be prone to stress-related mental disorders.

Materials and methods

This was a cross-sectional study (e-survey) of a convenience sample of Greek parents (either mother or father) conducted in mid-March 2020, shortly after the outbreak of COVID-19 in Greece. These were parents of children with chronic diseases or children without chronic diseases. Chronic diseases included cardiovascular diseases (congenital heart disease, heart failure), respiratory diseases (asthma, chronic lung disease of prematurity), diabetes mellitus, immunodeficiencies (including chemotherapy-induced), renal disorders (chronic renal failure, grades IV or V vesicoureteral reflux) and neuromuscular disorders. Medical conditions such as allergy, gastrointestinal disorders, anaemia, and obesity were characterised as “other”. An English version of the survey is available at https://forms.gle/xdtK3vqaPqFxEXhb6.

The study was conducted according to CHERRIES guidelines for e-surveys; a detailed checklist is presented in table S1 in the appendix. Briefly, potential participants were identified from the patient lists of 19 collaborating paediatricians across Greece (at least one from each of the 13 Administrative Regions) and contacted via email or personal social media messages. The questionnaire was developed in Google Forms and consisted of four sections: (1) introduction page; (2) (general information section, with details on parental demographics, place of residence and number of children; (3) children’s medical history; 4) psychometric testing section, consisting of the validated Greek versions of the Perceived Stress Scale (PSS) (10 items) [8] and the Revised Impact of Event Scale (IES-R) (22 items) [9]. PSS is the most widely used psychological instrument for measuring the perception of stress. PSS items are designed to capture feelings and thoughts of the respondents and to tap how unpredictable, uncontrollable and overloaded they find their lives. The scale also includes a number of direct queries about current levels of experienced stress. The participants could select any of 10 possible psychological responses. IES is a self-report tool consisting of 22 questions developed to measure the subjective response caused by an acute and stressful life event (post-traumatic stress). It is an easily answered and scored questionnaire. An IES-R score higher than 38 is considered suggestive for post-traumatic stress disorder [10]. Both questionnaires were brief and anonymous to guarantee confidentiality. The total number of the displayed questions varied depending on the number of children in the family; the minimum number of questions was 44 (one child) and the maximum 56 (five children).

Potential participants were initially directed to the introduction page, where information regarding study aims and a consent form were available. Parents who did not consent to participate were redirected to the end-of-study page. Responding to all questions was mandatory; participants were able to review their answers or leave the survey at any stage. The survey was released from 16 March (12:00) to 22 March 2020 (23:59) and the responses were automatically stored in a secure database. The study was approved by the Research Ethics Committee of the University of Patras, Greece (Approval ID: 129/10.3.2012), and was conducted in accordance with the Helsinki Declaration as revised in 2013.

Categorical variables (number of cases, %) were compared with the chi-square test, and continuous variables (mean ± standard deviation [SD]) with the Student’s t- or Mann-Whitney U-tests. Comparisons of parental scores among children with underlying disorders were performed using the Kruskal-Wallis test with Dunn’s post-hoc test for multiple comparisons. In the case of parents reporting more than one child with a chronic disease, their questionnaire score was included more than once. The effect of sex, age, education level, place of residence, presence of an adult >65 years old in the family and presence of a child with an underlying disorder on the PSS and IES-R scores was assessed with univariable and multivariable linear regression. Statistical analyses were performed with the IBM SPSS version 25 (IBM Corp., Armonk, NY). The level of statistical significance was set at 5%.

Results

Of the 1476 parents invited, 1206 accessed the survey (view rate 81.7%); 72 visitors declined to participate and 29 were excluded for technical issues, resulting in a response rate of 79.4%. The completion rate was 100%. The geographical distribution of responders and that of COVID-19 cases in Greece during the survey period are presented in supplementary figure S1 in the appendix.

Participants’ characteristics are presented in table 1. Most of the responders (86.7%) in the group of healthy children and 87.6% in the group of children with a chronic disease were mothers, with a mean age ± SD of 40.4 ± 6.8 years and 41.9 ± 7.3 years, respectively. In the group of healthy children, 72.1% of the parents were of higher educational level, as compared with 65.7% in the group of children with a chronic disease (p = 0.013). Most participants were of urban residence in both groups (61.7% vs 57.9%, respectively). The mean age of children without a chronic disease was 9.2 ± 5.6 years and that of children with underlying disorders was 10.5 ± 5.5 years (p <0.001) (table 1).

Overall, 178 parents (16.1%) had 198 children with underlying disorders (fig.1). Of these, 17 (9.5%) had a cardiovascular disease, 97 (54.5%) a respiratory disease, 38 (21.3%) diabetes mellitus, 8 (4.5%) immunodeficiency, 7 (3.9%) a renal disorder, 12 (6.7%) a neuromuscular disease and 10.6% other chronic disorders. In 12 children, a second chronic disease was reported (7 obesity, 5 anaemia); these secondary diagnoses were not included in the analysis.

Figure 1 PSS and IES-R scores (box-and-whisker plots with median, 75th percentile and range). Left panels: score comparisons between parents of healthy children and those of children with underlying disorders (Mann-Whitney U-test). Right panels: comparisons of parental scores among children with underlying disorders (n = 198) (Kruskal-Wallis test with Dunn’s post-hoc test for multiple comparisons). Red dotted line: cut-off for diagnosis of post-traumatic stress disorder. Number of cases are given in parentheses. a: significantly higher (p <0.01) compared with DM, REN and “other” disorders.

CV =cardiovascular disorders (congenital heart disease, heart failure); RES = respiratory disorders (asthma, chronic lung disease of prematurity); DM = diabetes mellitus; IMD = immunodeficiency (including chemotherapy) REN = renal disorders (chronic renal failure, grades IV or V vesicoureteral reflux); NMS = neuro-muscular disorders; Other = allergy, gastrointestinal disorders, anaemia, obesity.

PSS and IES-R scores (19.37 ± 6.64 and 36.64 ± 12.64, respectively) were significantly correlated (Pearson’s r = 0.666, p <0.001). Parents of children with underlying disorders reported higher stress levels than those of healthy children (Student’s t-test; PSS 21.22 ± 5.06 vs 19.02 ± 6.85, p <0.001; IES-R 40.71 ± 11.58 vs 35.86 ± 12.69, p <0.001) (fig.1). An IES-R score higher than 38 [10] was noted in 51.7% (n = 92) of parents of children with underlying disorders and 40.3% (n = 374) of those with healthy children (p = 0.007) (fig.1). Higher stress scores were noted in parents caring for children with cardiovascular and respiratory disorders or immunodeficiencies (fig.1). Multivariable linear regression analysis revealed that the presence of children with underlying disorders was a strong predictor of PSS and IES-R scores, independently of parental sex, age, education and place of residence (table 2).

Discussion

In this study we assessed the psychological impact of the COVID-19 pandemic on a large sample of Greek parents. We found that the levels of perceived stress were extremely high, particularly among caregivers of children with chronic or severe underlying disease. Increased stress levels were consistent in both psychometric tools, and almost half of the parents were classified as at high risk for post-traumatic stress disorder (fig.1).

Females, younger parents and those carrying for children with underlying disorders had higher stress levels (table 2). However, in the multivariable regression analysis only the presence of a child with a chronic disorder and female sex emerged as significant predictors of PSS and IES-R scores, independently of the education level and the place of residence. Higher PSS and IES-R scores in females have been consistently reported previously [8–11].

The impact of environmental stressors may be more profound in parents of children with chronic or severe underlying disorders [6]. During infectious disease outbreaks, for example, compliance with chronic medication and regular health care utilisation may be difficult for such children, thus causing additional psychological distress to their caregivers [5]. Interestingly, the parents of children with cardiovascular, respiratory and immune system disorders appeared to be more stressed (fig.1). The predilection of COVID-19 for the respiratory system, the frequency of cardiovascular complications and the pivotal role of the immune system in coping with the disease may explain these differences.

To the best of our knowledge, this is the first study reporting on the psychological burden of parents during the COVID-19 pandemic. Other strengths include the large sample size, the wide population coverage and the high participation rate. Parenting anxiety is a well-recognised distress factor for the family [5, 6]. However, since parents represent a substantial part of the economically active population in westernised societies, parenting stress may also have significant socioeconomic implications [5]. This important aspect has been generally unrecognised and underestimated in the current literature.

Inevitably, our study has weaknesses. First, the participants were recruited from the patient lists of collaborating paediatricians, which may have resulted in an overrepresentation of children with chronic disorders. However, all children in Greece visit a paediatrician who follows them closely, performs the vaccinations, monitors their growth, keeps detailed medical records and treats acute illnesses that do not require in-hospital care. Therefore, most children on paediatricians’ patient lists are, in principal, healthy. Second, the IES-R was developed to measure the subjective response to a traumatic incident and, thus, might not be suitable for exploring the psychological impact of long-lasting events such is the pandemic. However, our survey was released shortly after the outbreak of COVID-19 in Greece and in parallel with the escalation of the restriction measures; therefore, the use of this tool should be considered valid. The strong correlation between IES-R and PSS lends further support to the above hypothesis. Of note, the IES-R has been applied to explore the psychological burden at the peak of COVID-19 epidemic in China [11]. Finally, our study lacks a proper control group. For example, the inclusion of adults who were not parents would permit us to estimate more precisely the psychological burden of COVID-19 on the parents. Also, data on the PSS or IES-R scores of parents of children with chronic disorders before the pandemic would enable us to describe the net impact of COVID-19 on this group. It should be mentioned, however, that the PSS score of our participants was higher than the value reported for the Greek general population (i.e. 17.73 ± 6.64) [8]. Future studies, with a longitudinal design and repeated psychometric measurements, will allow for a better understanding of the psychological burden of COVID-19 in specific population groups and the factors that may influence it.

In conclusion, the impact of COVID-19 on parental psychology is substantial and unprecedented, and those caring for children with underlying disorders are more profoundly affected. Pending the global socioeconomic rebooting after the pandemic [12], the possible short- and long-term consequences of parental stress should not be ignored. Like other vulnerable groups, accurate health information and resources for psychological support should be provided to parents, especially those caring for children with underlying disorders.

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Appendix: Supporting data

Figure S1 A: Distribution of responders (n = 1105; 16–22 March 2020) per Greek Administrative Region. Β: Distribution of COVID-19 cases per 100,000 population in Greece on 22 March 2020 (Available at: https://lab.imedd.org/covid19).