Alarming rates of psychological problems among caregivers of pediatric kidney patients admitted during the COVID-19 pandemic lockdown.

INTRODUCTION: Caregivers of children with comorbidities suffer from various psychological problems. We envisage more such complications during this COVID-19 pandemic.
METHODOLOGY: A cross-sectional study to assess psychological issues in caregivers of children with kidney diseases, admitted during lockdown period in India was done. Psychological tools including Peritraumatic Distress Inventory (PDI), Insomnia Severity Index, Depression Anxiety Stress Scale (DASS II), Positive and Negative Affect Schedule (PANAS) and a new "COVID Stress Survey Questionnaire" were used. Standard statistical analysis using SPSS Statistic 23 (IBM SPSS Statistics, New York, United States) was done.
RESULTS: Forty-seven caregivers (33 mothers; 14 fathers) were included. Of these, 33 (70.2%) experienced psychological distress. On PANAS, 45 (95.7%) scored below cut off on a positive affect and 42 (89.4%) scored above cut off on a negative effect. The DASS II score revealed that 38 (80.9%) reported mild stress, 23 (48.9%) severe anxiety, and 37 (78.7%) had moderate depression. Upper middle socioeconomic status caregivers reported more insomnia. Further, parents of children with acute kidney injury (AKI) or prolonged hospital stay scored higher on subjective distress and aversive feelings.
CONCLUSION: We observed an alarming level of distress, insomnia, and anxiety among caregivers, more so in upper middle socioeconomic status, children with AKI and prolonged hospital stay. We suggest due counseling should be done. Copyright:

Caregivers of individuals with comorbidities including kidney diseases have poorer quality of life and suffer from more stress, depression, and anxiety than the general population.[1] A high incidence of anxiety and depression among caregivers of admitted children during COVID-19 pandemic has been reported.[2] Children with kidney diseases had a higher mortality during previous severe acute respiratory syndrome coronavirus 2 and the same maybe true for COVID-19.[3] The impact of COVID-19 pandemic on health and care systems goes beyond the disease and caregivers undergo several difficulties in getting medical care. The aim of this study was to identify psychological problems among caregivers of children with pediatric kidney diseases admitted during the strict lockdown period and associated risk factors.

METHODOLOGY

This was a cross-sectional observational study to assess level of psychological impact of COVID-19 and the lockdown thereof on parents of children with kidney diseases, both acute and chronic, admitted to Pediatric Nephrology Unit, Department of Pediatrics at a tertiary care center and the associated risk factors. We approached all parents whose children were admitted between March 24, 2020 and May 31, 2020, the period of lockdown in India. Those who could not be contacted during their stay in hospital were contacted telephonically. Written and electronic inform consent was sought prior to their enrolment in the study.

Psychological measures/tools

Along with obtaining sociodemographic information, parents were assessed on Peritraumatic Distress Inventory (PDI), Insomnia Severity Index (ISI), Depression Anxiety and Stress Scale (DASS 21), and Positive And Negative Affect Schedule (PANAS).[4567] Further, a COVID Stress Survey Questionnaire with 17 items specially designed for this study to explore COVID-19 and lockdown impact on targeted population was included. This questionnaire touched on different psychological components related to the pandemic and lockdown. Items were divided into three domains (COVID-related stress; lockdown-related stress; emotional- and family-related stress). Psychometric properties of this questionnaire (content and face validity) was assessed and verified by two pediatric nephrologists, two senior fellows in nephrology, one clinical psychologist and a child psychologist. Parents subjective experiences were recorded on 5-point Likert scale (not at all; mild; moderate; severe; and extremely severe).

Statistical analysis

Data were analyzed using SPSS Statistic 23 (IBM SPSS Statistics, New York, United States). Descriptive statistics were used to compute frequency percentages, mean, standard deviation for different variables. Bivariate correlation was computed and used for analyses of association between clinical and socio-demographic variables. Regression analysis was performed for the identification of independent variables.

RESULTS

Demographic profile of caregivers and clinical profile of patients

Sixty-five patients were admitted during the lockdown period. Most caregivers were assessed during their stay in hospital, out of which 2 did not consent to be a part of study. Others had to be contacted telephonically after discharge. Out of 16 parents contacted telephonically, 4 of their children were deceased and did not want to participate, 2 did not respond and 10 could not be contacted due to unavailability of network/social media facility or change of phone number. Finally, 47 caregivers were enrolled in the study. Among them, 70.2% (33) were females who were mothers of admitted children. Majority were living in joint families (87.2%). The demographic details of the participants as well as of the admitted children are summarized in Table 1.

Table 1

Clinical profile of patients admitted to the pediatric nephrology ward and demographic profile of caregivers

	Mean±SD	Patients (%)
Age (patients in months)	48.52±36.85	3 months- 148 months
Diagnosis	AKI	12 (25.5)
	Nephrotic syndrome	25 (51.2)
	CKD	10 (21.3)
Duration of hospitalization (days)	<7	10 (21.3)
	>7	37 (78.7)
	Mean±SD	Caregivers (%)
Age (parents in years)	33.21±6.08	23 years-50 years
Gender	Male	14 (29.8)
	Female	33 (70.2)
Education	Illiterate	4 (8.5)
	Primary	17 (36.2)
	Middle	9 (19.1)
	High	1 (2.1)
	Intermediate	8 (17.0)
	Graduation/postgraduation	8 (17.0)
Occupation	Professional	7 (14.9)
	Semi-professional	7 (14.9)
	Clerical/shop/farming	8 (17.0)
	Skilled	23 (48.9)
	Semi-skilled	1 (2.1)
	Unskilled	1 (2.1)
Income (rupees)	Up to 2640	1 (2.1)
	2641-7886	4 (8.5)
	7887-13,160	21 (44.7)
	13,161-19,758	2 (4.2)
	19,759-26,354	2 (4.3)
	Above 52,734	17 (36.2)
SES	Upper middle	20 (42.6)
	Lower middle	7 (14.9)
	Upper lower	20 (42.6)
Family type	Nuclear	5 (10.6)
	Joint	41 (87.2)
	Extended	1 (2.1)
Locality	Urban	20 (41.7)
	Rural	27 (56.2)

SES – Socioeconomic status; SD – Standard deviation

Clinical profile of caregivers

Caregivers descriptive scores on different domains of PDI, PANAS, ISI, and DASS 21 are given in Table 2.

Table 2

Scores of caregivers of children hospitalized with kidney disease on clinical measures (Peritraumatic Distress Inventory, Positive and Negative Affect Schedule, Insomnia Severity Index and Depression Anxiety Stress Scale)

	Minimum	Maximum	Mean±SD	Skewness	Kurtosis
PDI
Life threat	0	16.00	8.40±4.01	−0.375	−0.394
Loss of control	0	10.00	3.48±2.68	0.652	−0.207
Helplessness/anger	0	8.00	3.46±1.95	−0.151	−0.521
Guilt/shame	0	8.00	3.23±1.77	0.167	−0.037
TPDI scores	0	36.00	18.59±8.89	−0.373	−0.536
PANAS
Positive aspect	9.00	35.00	24.04±6.34	−0.150	−0.487
Negative aspect	12.00	42.00	28.68±6.84	−1.013	0.589
ISI
Insomnia severity scores	4.00	20.00	11.78±4.06	−0.277	−0.489
DASS
Stress	7.00	22.00	15.27±3.12	−0.277	0.247
Anxiety	7.00	20.00	14.19±3.50	−0.375	−0.410
Depression	7.00	22.00	15.42±3.22	−0.342	−0.167

PDI – Peritraumatic Distress Inventory; PANAS – Positive and Negative Affect Schedule; ISI – Insomnia Severity Index; DASS – Depression Anxiety Stress Scale; SD – Standard deviation; TPDI – Total PDI

Thirty-three (70.2%) caregivers experienced significant distress. On ISI, 41 (87.20%) scored above cut off, on PANAS, 45 (95.7%) caregivers scored below cut off on positive affect and 42 (89.4%) scored above cut off on negative effect [Figure 1].

Figure 1

Parents scores above cut off on Peritraumatic Stress Inventory (PDI), insomnia severity index and positive and negative aspect scale

We also examined severity of insomnia and distress among participants. While 25 (53.20%) caregivers experienced subthreshold insomnia-related problems, 14 (29.8%) reported moderate insomnia [Figure 2]. Scores of caregivers on stress, anxiety and depression assessed by DASS II revealed that 38 (80.9%) exhibited mild stress, 23 (48.9%) severe anxiety, and 37 (78.7%) of them experienced moderate level of depression [Figure 3].

Figure 2

Severity of insomnia among parents

Figure 3

Description of psychopathology among caregivers

Association between demographic and clinical variables

Mental health problems of mothers were more severe than fathers, though not statistically significant. However, despite reporting more mental health problems, mothers of hospitalized children were more enthusiastic, active, and alert than fathers. Gender-wise comparison revealed that mothers scored significantly high on positive affect domain than fathers (male: 22.75 ± 6.49; female: 27.07 ± 4.95; t value 2.222; P: 0.031). Post hoc analysis revealed that caregivers of children with acute kidney injury (AKI) scored significantly higher on subjective distress and aversive feelings than those of other two groups (AKI: 31.66 ± 3.98a; Nephrotic Syndrome: 29.12 ± 6.26; chronic kidney disease [CKD]: 24.00 ± 8.88; F value 3.988; P: 0.026). Caregivers whose children were hospitalized >7 days, also exhibited significantly higher subjective distress and aversive feelings than those hospitalized for <7 days (Group I >7 days of hospitalization: 27.37 ± 7.08; Group II <7 days of hospitalization: 33.50 ± 2.50: T: 2.671; P: 0.010). Significant positive correlation was observed between various measures of distress and stress, anxiety and depression [Table 3]. Similarly, insomnia was associated with measures of distress and stress, anxiety and depression. Parents, who perceived pandemic as life threat, had guilt feelings and were feeling helpless to deal with current situation, also reported high on stress, anxiety and depression.

Table 3

Association among various clinical measures

	LT	LOC	HA	GS	TPDI	Stress	Anxiety	Depression
LT	-	-	-	-	-	0.516**	0.665**	0.644**
LOC	-	-	-	-	-	0.582**	0.609**	0.463**
HA	-	-	-	-	-	0.512**	0.650**	0.637**
GS	-	-	-	-	-	0.345*	0.525**	0.546**
Total PDI scores	-	-	-	-	-	0.590**	0.731**	0.679**
Insomnia	0.576**	-	0.533**	0.372**	0.529**	0.340*	0.423**	0.530**

*Significant at 0.05; **Significant at 0.01. LT – Life threat; LOC – Loss of control; HA – Helplessness and anger; GS – Guilt and shame; PDI – Peritraumatic Distress Inventory; TPDI – Total PDI

Regression analysis

Regression analysis for depression as the criterion variable and stress, insomnia, and negative affect as predictors (independent variables) revealed that these have jointly contributed 65% in accounting the variance in materialism among participants (R2 = 0.65, F = 26.590, P < 0.01) and rest of 35% remained unaccounted. Stress alone caused depression in 51% caretakers; insomnia increased depression to 59.8%, an additional 8.4%; stress, insomnia and negative affect together caused depression in 62.5%. The adjusted R2 (0.625) is fairly close to the value of R2 (0.65) that represent the population parameters to satisfactory level [Table 4].

Table 4

Regression analysis

	R 2	Adjusted R2	F	P
Stress	0.524	0.514	49.627**	0.000
Stress, insomnia	0.615	0.598	35.211**	0.000
Stress, insomnia, negative affect	0.650	0.625	26.590**	0.001

**Significant at 0.01. Dependant variable: Depression, Predictors: Stress; Anxiety; Distress (PDI); Insomnia; Positive and Negative affect

COVID-19 survey questionnaire [Table 5]

Results of the specially designed survey questionnaire “COVID-19 Survey Questionnaire” revealed that 10 (21.3%) parents were extremely stressed about probability of their children getting infected during their stay in hospital. Probably this was because parents were scared that children with kidney disease admitted in the hospital during pandemic were more vulnerable to get infected by COVID.. Fifteen (31.9%) parents were extremely worried that kidney disease has made their children more vulnerable to COVID-19 infection, 13 (27.7%) were following social distancing measures and 19 (40.4%) were washing hands all the time. Nine (19.1%) caregivers were completely satisfied with preventive and protective measures taken by the Government of India.

Caregivers did not exhibit extreme worry regarding procuring medication and getting medical assistance 1 (2.1%) and food 2 (4.3%) during their stay in hospital. However, parents staying in hospital with their sick child had moderate (36.2%) to extreme (19.1%) concern about their hampered routine and probable difficulties faced by their family members procuring daily essentials (31.9% moderate; 17.0% extreme) in the absence of male member at home during lock down.

Twenty-one (44.7%) parents were moderately strained emotionally and had reported low mood, while 15 (31.9%) were extremely missing their family members, especially sick child's siblings at home. Six (12.8%) expressed their extreme worries about family members getting infected from community spread and nine (19.1%) were extremely worried whether they will be able to see their family members again. Six (12.8%) were worried whether they will be able to go back home and 17 (36.2%) parents were moderately concerned that their family member can die due to COVID-19. Fathers scored significantly higher on family-related stress than mothers.

DISCUSSION

The COVID-19 pandemic has affected treatment of all other patients with comorbidity, either because of lockdown or fear of acquiring the infection to attend hospitals. Children with chronic disease like CKD or emergency situations such as AKI, Nephrotic Syndrome with complications need hospital visits. Caregivers play an important role in well-being of patients especially children with any disease, and this is enhanced if the caregivers are healthy. Distress associated with caregivers arises because of emotional and physical response of to meet the demands of new challenges during caring of their sick child. Care giving is a multifaceted concept that compasses the psychological, emotional, social, and financial concept of delivering care giving duties.[89]

The results of our study revealed that COVID-19 outbreak had a great impact of mental health of caregivers of children with kidney disease. Among caregivers, 70.2% were mothers, which are lower than that of the study done by Lima et al., where 89.8% were mothers.[10] This can be explained by the fact that we have bigger families and mothers may have to stay with other children at home. However, even in our study, most of them were mothers as children admitted were young and needed them.

Findings of our study revealed that 70.2% caregivers experienced significant distress. On PANAS 95.7% scored below cut off on positive affect and 79.4% scored above cut off on negative effect. Insomnia was present in 87.2% caregivers. DASS II revealed that 80.9% reported mild stress, 78.7% had moderate level of depression, and 48.9% severe anxiety. Yuan et al. used different scales, but they too had seen high levels of anxiety and stress in caregivers of children hospitalized during the epidemic phase of COVID 19 in their hospital.[2] Likewise, similar findings have been reported by few other studies that caregivers of children with kidney disease experience more anxiety and depression than caregivers of other population of caregivers studied during COVID-19 outbreak.[1112] There are various other studies in the pre-COVID era that shows that distress, anxiety and stress is rampant in caregivers of admitted patients.[8910111314] However, it has significant risen after the pandemic, which is a concern.

Parents from upper middle socioeconomic status reported significantly more insomnia-related problems. However, Fielding et al. found that parents belonged to low socioeconomic status, extended families, young children and those who have limited family support are more vulnerable to develop psychosocial problems.[15] The addition of knowledge of COVID-19 may have changed this in our study. Besides, caregivers of children with AKI and those with prolonged hospital stay of >7 days scored significantly higher on subjective distress and aversive feelings.

The results of the specially designed “COVID-19 Survey Questionnaire” are self-explanatory with parents worried about discrimination of their children (moderate concern: 40.4%), getting infected, COVID-19 breakdown impact on their child's treatment. These findings are in line with recent survey by Zhao et al.[11] They found that 75.5%–80% of caregivers thought that pandemic COVID-19 had a negative impact on treatment of their children with one-third participants reported these effects to be severe or extremely severe. Besides, stress of maintaining social distancing and hand washing had affected them.

Zhang et al.[12] observed that majority of parents (80.8%) exhibited their worries about their sick children during COVID-19 outbreak and 72.4% among them expressed that their child were more vulnerable to get infected. In our study, however, only 21.3% parents were extremely stressed about probability of their children getting infected during their stay in hospital. Fifteen (31.9%) parents were extremely worried that kidney disease has made their children more vulnerable to COVID-19 infection. Interestingly, few were completely satisfied with preventive and protective measures taken by the Government of India. Although not significant parents of children with CKD exhibited more COVID-19-related stress than parents of Nephrotic Syndrome and AKI children, as they know that frequent hospital visits would be essential. Contrary to the findings of study by Zhao et al., we found that caregivers in our study were not so worried about food and medicines, partly because our hospital provided most of it free as a policy. However, they were worried about food supplies at home in the absence of bread winner member at home during lock down. Parents of children with AKI reported higher lockdown-related stress than parents of CKD and Nephrotic Syndrome, though not statistically significant. Half of the parents were moderately strained emotionally and had reported low mood.

CONCLUSION

We observed that there was a high level of distress, insomnia, and anxiety among caregivers of pediatric kidney disease patients during lockdown in this pandemic. This is more so in upper middle socioeconomic status, those with AKI and prolonged hospital stay. Parents of hospitalized children are under tremendous stress and are more vulnerable to develop mental health problems. Thus, we suggest that psychosocial support to caregivers can help them enhance their psychological well-being and improve their quality of life.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

Table 5

Frequency distribution on items of the “COVID-19 Survey Questionnaire”

	Not at all (%)	Little bit (%)	Sometimes/moderate (%)	Severe (%)	Extremely severe (%)
COVID-related worries/stress
1. To what extent do you think everything will be fine soon?	-	29.8	29.8	27.7	12.8
2. To what extent do you have feeling of being avoided by others?	4.3	31.9	40.4	19.1	4.3
3. To what extent are you worried that you/your child can get affected with COVID-19?	14.9	14.9	34.0	14.9	21.3
4. To what extent are you worried about effect of COVID-19 in your sick child	6.3	4.3	40.4	17.0	31.9
5. To what extent are you maintaining social distancing?	12.8	-	25.5	34.0	27.7
6. To what extent washing hand is important to avoid getting infected with COVID-19?	2.1	6.4	23.4	27.7	40.4
7. To what extent are you satisfied that our government is taking protective measures?	4.3	8.5	34.0	34.0	19.1
Lockdown-related worries/stress
8. To what extent are you having problems in getting medicine?	36.2	25.5	21.3	14.9	2.1
9. To what extent are you worried about availability of eatables?	25.5	34.0	25.5	10.6	4.3
10. To what extent do you are about how your family would be managing food/other essentials?	8.5	14.9	31.9	27.7	17.0
11. To what extent lockdown has affected your life/routine activities?	23.4	-	36.2	21.3	19.1
Emotional- and family-related worries/stress
12. To what extent do you feel like not talking to anyone?	8.5	23.4	44.7	19.1	4.3
13. To what extent are you missing your family members?	6.4	8.5	38.3	14.9	31.9
14. To what extent are you worried that you won’t be able to go back your home?	17.0	10.6	44.7	14.9	12.8
15. To what extent do you feel that you will not be able to see your family members again?	12.8	27.7	31.9	8.5	19.1
16. To what extent are you worried about family members may get infected from community spread?	4.3	17.0	40.4	25.5	12.8
17. To what extent do you are worried that any of your family members can die due to COVID-19?	21.3	21.3	36.2	14.9	6.4