Psychological Distress and Quality of Life in CKD Caregivers: Exploring Neurobehavioral Correlates Across Disease Stages

Abstract

Background

Caregivers of children with chronic kidney disease (CKD) often face significant psychological and social challenges. This study aimed to assess the extent of psychological distress, quality of life (QOL), coping strategies and associated risk factors among caregivers and to evaluate whether these issues intensify with advanced stages of CKD.

Methods

A cross-sectional observational study was conducted at a tertiary care centre in North India, enrolling 50 consecutive caregivers of children with CKD between July 2020 and June 2021. Participants were categorised into two groups: Early-stage CKD (Stages 1–2) and advanced-stage CKD (Stages 3–5). Caregivers were assessed using the Paediatric Renal Caregiver Burden Scale (PRCBS), Depression Anxiety Stress Scale (DASS-21), World Health Organisation Quality of Life Scale-Brief (WHOQOL-BREF) and Ways of Coping Checklist. Relevant statistical analyses were performed.

Results

Caregivers of children with advanced CKD reported higher levels of psychological distress, with 88.5% experiencing moderate to severe depression, 38% anxiety and 35% stress. In contrast, caregivers of early-stage CKD children reported depression in 21%, with no cases of moderate to severe anxiety or stress. QOL scores were significantly lower and burden scores significantly higher, in the advanced CKD group. Lower socioeconomic status, reduced maternal education and low household income were linked to higher distress and poorer QOL. Problem-focused coping strategies were commonly used across both groups.

Conclusion

Psychosocial difficulties and caregiver burden increase with CKD severity and adversely affect QOL. Early identification and psychological support for caregivers may enhance overall outcomes for both the child and family.

Keywords

Chronic kidney disease (CKD)quality of life (QOL)coping burden depression anxiety stress

Introduction

Chronic kidney disease (CKD) is a global health issue with an overall estimated frequency of 1%–13% in different regions of India. It is associated with substantial morbidity and mortality. Besides, because of challenges in access to care, more than half of the patients with CKD in India are first seen when they reach end-stage renal disease with various complications.¹

Caregivers are individuals who actively assist patients in coping and managing their chronic illness.² They have to fulfil the role of parents and take on additional tasks with health care workers.³ During the COVID-19 pandemic, it has been shown that caregivers of children with kidney disease experience high rates of psychological distress.^{4, 5} The chronic nature of renal failure and many treatment-related consequences cause patients’ lifestyle to change. The term ‘burden of care’ is used by caregivers to describe the type of distress they experience as a result of providing care. This distress can be physical, psychological, social or economic in nature.^{6, 7}

The unique challenges that caregivers face while taking care of a child with CKD are being more widely acknowledged.^{8, 9} They need to support patients at home with daily tasks, commuting to and from dialysis or health care facilities, amongst other tasks. When compared to non-caregivers of the same age, caregivers may neglect their own care. Parents of CKD patients must deal with monetary issues as well as biological, psychological and social issues.¹⁰ Such families bear substantial hardships that affect almost every aspect of family life.¹¹ It has been reported that caregivers of children receiving peritoneal dialysis report higher rates of sadness and lower quality of life (QOL).¹²

We envisage that this study would help us know the magnitude of psychological problems in caregivers of CKD children, the effect on QOL, coping strategies, associated risk factors and if they increase with advanced stages of CKD.

Material and Methods

A cross-sectional comparative study was performed in the Paediatric Nephrology Unit of a tertiary care centre in North India, following ethical approval from the Institute Ethics Committee (NK/6155/MD/789). Fifty consecutive caregivers of children with different stages of CKD (Figure 1), aged 8–15 years of age, who consented were enrolled between July 2020 and June 2021. Caregivers were divided into two groups: Group 1 included caregivers of children with early CKD stages 1 or 2 and Group 2 consisted of caregivers of children with advanced CKD stages 3–5, as shown in Figure 1.

Figure 1.

Distribution of Children with Different Stages of CKD.

Parents or caregivers having a history of psychiatric or other chronic illnesses were excluded. Case record proformas were filled which included demographic information, such as parents’ educational background, employment history, income, socioeconomic status, family type and size, treatment modalities and clinical data.¹³

Tools used were:

World Health Organisation Quality of Life Scale-Brief (WHOQOL-BREF): This is a short version derived from WHOQOL-100. There are 26 items, one from each of the 24 facets plus two general health questions. It assesses QOL in four specific domains: Physical health, psychological, social relationships and environment together with an overall QOL score. Higher scores signify a higher QOL. Domain scores produced by the WHOQOL-BREF correlate highly (0.89 or above) with WHOQOL-100 domain scores.¹⁴

Paediatric Renal Caregiver Burden Scale (PRCBS): This was developed to provide a quantitative assessment of the level of burden in caregivers or parents of a child with CKD. The 51 items on the measure were generated from themes which emerged following thematic analysis of in-depth interviews with parents of children with CKD and healthcare professionals working with these children. Caregivers rate their responses to statements on a 5-point Likert scale ranging from 1 (‘never’) to 5 (‘always’) reflecting on how they had been feeling over the previous month. These questionnaire items were grouped into nine main themes.¹⁵

Depression, Anxiety and Stress Scale 21(DASS): This 21-item questionnaire contains three subscales, including depression (seven items), anxiety (seven items) and stress (seven items). The caregivers respond to the items on a 4-point Likert scale (0 = never a problem, 1 = sometimes a problem, 2 = often a problem and 3 = almost always a problem). Higher scores indicate higher depression, anxiety and stress. The total score is calculated by summing the scores of each subscale. Moreover, DASS scoring manual has provided cut-off scores for defining normal (0–4 for depression, 0–3 for anxiety and 0–7 for stress), mild (5–6 for depression, 4–5 for anxiety and 8–9 for stress), moderate (7–10 for depression, 6–7 for anxiety and 10–12 for stress), severe (11–13 for depression, 8–9 for anxiety and 13–14 for stress) and extremely severe (>14 for {Citation}depression, >10 for anxiety and >17 for stress) scores.¹⁶

Ways of Coping Checklist: This was developed by Folkman and Lazarus. In the revised version, items are to be rated on a 4-point Likert scale. The alpha coefficients for all eight coping strategies were 0.70 each for Confrontive Coping and Self-Controlling; 0.61 for Distancing; 0.76 for Seeking Social Support; 0.66 for Accepting Responsibility; 0.72 for Escape Avoidance; 0.68 for Planful Problem Solving and 0.79 for Positive reappraisal. The scale has good face validity.¹⁷

Statistical Analysis

The statistical analysis was carried out using IBM SPSS Statistics version 23 (New York, United States).¹⁸ Normalcy of data was examined to see if the variables met the normal distribution measures and, since data was not normally distributed, non-parametric tests were used to analyse the data. The descriptive statistics included frequency distribution, percentage, bar chart and pie chart. All quantitative variables were estimated using measures of central location (median) and measures of dispersion (IQR). Mann-Whitney U test and Kruskal-Wallis tests were used to compute significant differences between clinical and demographic variables, with post hoc analysis to identify the significant difference between both groups. Association between various clinical and demographic variables was also explored using Spearman’s correlation coefficient. For prediction, the linear regression model using the stepwise method was applied. All statistical tests were seen at a two-tailed level of significance (p ≤ .01 and p ≤ .05).

Results

Baseline Characteristics

A total of 50 parents or caregivers were included in the study. The median age of female and male participants was 36 ± 5.88 and 39.91 ± 6.21 years, respectively. More than 50% of caregivers had a middle level of education and one-fourth completed their graduation or postgraduation level of education in both groups. Elementary-level occupation was reported by 50% (n = 14) in Group 1 and 69.2% (n = 18) in Group 2. Participants from upper or lower socioeconomic status (SES) comprised 54.2% (n = 13) in Group 1 and 46.2% (n = 12) in Group 2. In both groups, two-thirds of caregivers had a monthly family income of less than Rs. 26,354 as shown in Table 1.

Among clinical variables affecting children of these caregivers, structural kidney abnormality was the most frequent cause of CKD in both groups: 54% in Group 1 and 42% in Group 2. Cystic kidney disease was the least frequent cause and affected 4% of children in both groups. In contrast to Group 1, where only 25% of children had anaemia, 80.8% of children in Group 2 had anaemia. Children in Group 2 required renal replacement therapy in 53.8% of cases—haemodialysis in 30.8%, peritoneal dialysis in 19.2%, kidney transplant in 3.8% and 34% of cases were handled conservatively.

Description of Various Study Measures

(a)

Quality of life of caregivers

The WHOQOL-BREF scale was used to evaluate caregivers’ QOL. Participants of Group 2 reported significantly poorer overall QOL across all sub-domains compared to participants in Group 1. Parents and caregivers in both groups reported the lowest scores in the social sub-domain of the WHOQOL scale. However, altered social life could not impact their psychological or mental health significantly, as physical and psychological subdomains were observed to have maximum scores as shown in Table 2. (b)

Burden perceived by caregivers

The PRCBS was used to measure the burden on caregivers. Group 2 had more burden than Group 1 in the majority of the areas. The CKD treatment responsibility was the area with the highest load in both groups. Parents and caregivers of Group 2 experienced significantly higher treatment-related burdens than their counterparts, followed by emotional and psychological burden. Parents and caregivers of both groups perceived physical and financial load as their least priority. Long-term caregiving and financial stress had not hampered their quality while taking care of their sick child, as described in Table 2. (c)

Distress among caregivers

Using the DASS scale, depression, anxiety and stress-related distress were measured. A significant difference in both groups was seen in all three domains of the DASS scale of distress. Moderate to severe stress and anxiety were observed in 35% and 38%, respectively, in caregivers of Group 2, as compared to none in Group 1. In Group 2, 88.5% of caregivers experienced moderate to severe depression as compared with 21 % in Group 1, as shown in Figure 2. (d)

Coping styles

Figure 2.

Comparison of Two Groups According to the Severity of Distress.

Participants in Group 1 used problem-focused coping strategies more frequently, although this difference was not statistically significant. Participants in Group 2 tended to adopt emotion-focused coping methods more frequently than those in Group 1. Participants in Group 2 used distancing more than participants in Group 1, which was the only statistically significant difference (p value .01). In Group 1, self control with a median = 10.5 (3.75) was the most popular coping mechanism while accepting responsibility was the least popular having median = 2 (2). In Group 2, accepting responsibility had the lowest score with a median of 2 (2) while escape avoidance had the highest score with a median of 12 (4.25). Most of the coping mechanisms showed no significant difference between the two groups. (Table 2)

Table 1.

Demographic Description of the Sample Population.

Parameters		Group 1 (N = 24) Frequency (%)	Group II (N = 26) Frequency (%)
Mother’s age (in years)		36 (5.88)	37.76 (7.15)
Father’s age (in years)		39.91 (6.21)	41.46 (7.2)
Mother’s education	Up to middle schoolUp to intermediategraduate/postgraduate	12 (50%)6 (25%)6 (25%)	16 (61.6%)3 (11.5%)7 (26.9%)
Father’s education	Up to middle schoolUp to intermediategraduate/postgraduate	14 (58.3%)4 (16.7%)6 (25%)	14 (53.8%)6 (23.1%)6 (23.1%)
Occupation(head of family)	Elementary occupationSkilled/semiskilledTechnical and associate profession	14 (50%)9 (37.5%)1 (4.2%)	18 (69.2%)5 (19.2%)3 (11.5%)
Family income	<Rs. 13,161Rs. 13,161–Rs. 26,354>Rs. 26,354	6 (25.0%)9 (37.5%)9 (37.5%)	6 (23.1%)11 (42.3%)9 (34.6%)
Family type	Nuclearjoint	11 (45.8%)13 (54.2%)	12 (46.2%)14 (53.8%)
Socioeconomic status	Upper middleLower middleUpper lowerlower	5 (20.8%)5 (20.8%)13 (54.2%)1 (4.2%)	6 (23.1%)4 (15.4%)12 (46.2%)5 (19.2%)
Gap in schooling of children	>6 months<6 months	6 (25%)18 (75%)	17 (65.4%)9 (34.6%)

Table 2.

Comparative Presentation of Group 1 and Group 2 Scores on Various Study Parameters (DASS-21, WCC, PRCBS and WHOQOL).

Variables	Group 1 (N = 24)		Group 2 (N = 26)		p Value
Variables	Median	IQR	Median	IQR	p Value
World Health Organisation Quality of Life (WHOQOL)
Physical	56.00	19.00	38.00	13.00	.001
Psychological	56.00	6.00	38.00	13.00	.001
Social relationship	53.00	19.00	31.00	19.00	.001
Environmental	56.00	19.00	38.11	25.00	.001
Overall QOL	55.75	16.88	35.87	10.81	.001
Paediatric Renal Caregiver Burden Scale (PRCBS)
Physical	4.00	1.00	6.00	2.00	.001
Financial	4.00	1.75	4.00	2.00	.673
Social	6.00	2.75	7.00	2.00	.003
Emotional/psychological	20.00	3.75	28.50	7.50	.001
Caregiver role	7.00	1.75	11.00	3.25	.001
Impact on family	17.00	6.75	25.50	6.00	.001
Impact on child	12.00	2.00	16.00	3.75	.001
CKD treatment responsibility	25.75	5.74	36.77	6.86	.001
Overall burden	70.00	8.75	98.00	17.00	.001
Depression Anxiety and Stress Scale (DASS)
Stress	8.00	7.00	16.00	8.00	.001
Anxiety	2.00	7.75	8.00	6.00	.001
Depression	8.00	6.00	20.00	4.00	.001
Ways of Coping Checklist (WCC)
Confrontive coping	6.00	2.00	6.00	4.00	.629
Distancing	4.00	2.00	6.00	2.25	.012
Self-controlling	10.50	3.75	10.50	3.00	.716
Seeking social support	10.00	4.00	7.50	4.00	.221
Accepting responsibility	2.00	2.00	2.00	2.00	.703
Escape avoidance	10.00	6.00	12.00	4.25	.147
Planful problem solving	10.00	4.00	8.00	3.50	.208
Positive reappraisal	7.00	3.00	7.00	3.50	.930

Association Between Demographic and Various Study Measures

Parents’ education showed a significant positive association with all parameters of QOL. Mother’s education was found to have a significant negative association with overall burden; emotional, psychological, CKD treatment responsibility, impact on child and also with stress and depression. Family SES and gap in schooling had a negative association with QOL, with parents who belonged to upper middle SES and those whose children were not able to attend their school more than six months reporting poorer QOL. SES and gaps in schooling showed a significant positive association with all parameters of burden, stress and depression. Parents of upper middle SES and of children with a greater gap in schooling experienced a higher burden, were more stressed and showed higher symptoms of depression than lower SES parents of children who were regularly attending school (Tables 3 and 4).

Table 3.

Significant Association Between Demographic and Different Study Measures.

Domains	Variable		Median IQR	Mean Rank	KW/MWU(p Value)	r(p Value)
DASS
Overall QOL	Mother’s education	Middle school	35.87 (12.75)	16.96	17.064(.000)	0.573(.000)
		Intermediate	51.50 (18.50)	34.39
		graduate/postgraduate	50.25 (18.13)	35.58
	Father’s education	Middle school	36.00 (22.28)	20.48	11.532(.013)	0.475(.000)
		Intermediate	43.87 (12.19)	25.10
		Graduate/postgraduate	57.87 (17.63)	37.54
	SES	Lower	57.87 (16.00)	37.25	20.272(.000)	0.637(.000)
		Lower middle	48.50 (20.50)	34.71
		Upper lower	36.25 (20.13)	21.18
		Upper middle	31.37 (12.56)	9.25
	Gap in schooling	>6 months	50.25 (20.25)	30.07	187.000(.016)	0.344(.015)
	Gap in schooling	<6 months	36.25 (13.50)	20.13	187.000(.016)	0.344(.015)
Overallburden	Mother’s education	Middle school	92.50 (37.25)	29.77	6.748(.049)	−0.284(.046)
		Intermediate	77.00 (19.00)	22.06
		Graduate/postgraduate	71.00 (28.00)	18.69
	SES	Lower	76.00 (23.50)	19.79	7.151(.049)	0.374(.007)
		Lower middle	71.00 (12.00)	18.00
		Upper lower	87.00 (35.00)	27.72
		Upper middle	93.00 (21.00)	36.42
	Gap in schooling	>6 months	73.00 (23.00)	21.00	189.000(.018)	0.338(.016)
		<6 months	94.00 (32.00)	30.78
		Middle school	92.50 (37.25)	29.77
Stress	Mother’s education	Middle school	16.00 (9.50)	29.73	6.487(.039)	−0.357^*.011
		Intermediate	14.00 (7.50)	23.89
		Graduate/postgraduate	8.00 (6.00)	17.50
	SES	Lower	10.50 (6.00)	17.42	8.529(.036)	0.411(.003)
		Lower middle	10.00 (6.00)	19.36
		Upper lower	16.00 (14.00)	29.12
		Upper middle	15.00 (6.00)	33.75
	Gap in schooling	>6 months	10.00 (8.00)	21.17	193.500(.022)	0.760(.000)
	Gap in schooling	<6 months	16.00 (6.00)	30.59	193.500(.022)	0.760(.000)
Depression	Mother’s education	Middle school	18.00 (13.50)	32.25	6.642(.046)	−0.299(.035)
		Intermediate	14.00 (12.00)	20.56
		Graduate/postgraduate	10.00 (13.00)	20.85
	SES	Upper lower	12.00 (13.15)	20.33	8.622(.049)	0.360(.010)
		Lower middle	8.00 (12.00)	17.86
		Upper middle	18.00 (14.00)	27.52
		Upper	19.00 (4.00)	36.33
	Gap in schooling	>6 months	10.00 (24.00)	20.78	183.00(.012)	0.484(.000)
	Gap in schooling	<6 months	18.00 (24.00)	31.04	183.00(.012)	0.484(.000)

Table 4.

Association Among Different Study Measures.

	PHY	FIN	SOC	Emo	CR Role	Imp Fam	Imp Child	CKD Res	Total Burden
Phy	−0.654^**	−0.388^**	−0.523^**	−0.657^**	−0.528^**	−0.680^**	−0.469^**	−0.652^**	−0.762^**
Psy	−0.626^**	−0.469^**	−0.543^**	−0.698^**	−0.446^**	−0.657^**	−0.622^**	−0.708^**	−0.793^**
SR	−0.626^**	−0.469^**	−0.543^**	−0.698^**	−0.446^**	−0.657^**	−0.622^**	−0.708^**	−0.793^**
Env	−0.538^**	−0.334^*	−0.414^**	−0.502^**	−0.316^*	−0.509^**	−0.510^**	−0.536^**	−0.603^**
Overall QOL	−0.662^**	−0.353^*	−0.509^**	−0.647^**	−0.515^**	−0.656^**	−0.562^**	−0.659^**	−0.767^**
Stress	0.553^**	0.456^**	0.624^**	0.710^**	0.403^**	0.771^**	0.602^**	0.761^**	0.820^**
Anxiety	0.428^**	0.401^**	0.396^**	0.547^**	0.377^**	0.726^**	0.633^**	0.544^**	0.718^**
Depression	0.575^**	0.358^*	0.547^**	0.649^**	0.505^**	0.854^**	0.611^**	0.726^**	0.834^**
ConfC	0.175	−0.011	0.228	0.075	0.094	−0.026	0.057	0.129	0.080
DistC	0.072	0.007	0.172	0.088	−0.017	0.133	0.053	0.187	0.101
SCC	−0.210	−0.175	−0.117	−0.208	0.075	−0.095	0.102	−0.071	−0.104
SSSC	−0.167	−0.102	−0.076	−0.103	−0.292^*	−0.328^*	−0.347^*	−0.230	−0.292^*
ARC	−0.005	−0.150	−0.030	−0.073	0.256	0.036	0.047	−0.026	0.031
EAC	0.322^*	0.351^*	0.406^**	0.371^**	0.205	0.505^**	0.244	0.285^*	0.457^**
PPSC	−0.194	−0.305^*	−0.112	−0.103	−0.289^*	−0.379^**	−0.246	−0.255	−0.300^*
PRC	−0.216	−0.253	−0.208	−0.159	0.034	−0.136	0.046	−0.180	−0.129

Note: Column: Parameters of burden- Phy: Physical, Fin: Financial, Soc: Social, Emo: Emotional, CR Role: Caregiving role, Imp Fam: Impact on family, Imp Child: Impact on child, CKD Res: CKD treatment responsibility.

Rows: Parameters of QOL- Phy: Physical QOL, Psy: Psychological QOL, Soc: Social relationship QOL, Env: Environmental QOL; Parameters of Coping- Conf: Confrontive, Dist: Distancing, SC: Self control, SSS: Seeking social support, AR: Accepting responsibility, EA: Escape avoidance, PPS: Planful problem solving, PR: Positive reappraisal.

Association Between Various Study Measures

A significant positive association was observed between parameters of distress and burden, correlation ranging from 0.358 to 0.854. Similarly, overall burden and stress (r = 0.820; p = .001), anxiety (r = 0.718; p = .001) and depression (r = 0.834; p = .001). QOL had a negative association with all the subdomains of burden; correlations ranged from −0.316 to −0.793. Those who experienced higher burden reported poorer QOL and exhibited more symptoms of stress, anxiety and depression. Participants using emotion-focused coping strategies experienced more burden, seeking social support (r = −0.292; p = .039), escape avoidance (r = −0.457; p = .001) and planful problem solving (r = −0.300; p = .034) as described in Table 4.

Predictors of Quality of Life

A multiple linear regression was calculated to predict QOL based on stress, depression, burden perceived by participants, mother’s education, SES, duration of illness and gap in schooling. A significant regression equation was found (F = 21.255; p value .001), with a high degree of correlation (0.861) and 74.1% total variation in the dependent variable (R² of 0.741). The predicted QOL of participants was equal to 92.217 ± 0.563 (overall burden), ± 4.929 (socioeconomic status) ± 0.667 (depression) (Figure 3).

Figure 3.

Scatterplot and P-P Plot Showing Correlation Factor of WHOQOL.

Discussion

Long-term caregiving for children with CKD is often stressful and disrupts family routines. While existing literature addresses some of these concerns, a comprehensive exploration of multiple psychosocial dimensions in caregivers across different CKD stages appears to be lacking. Therefore, this study was undertaken to examine a broad range of psychosocial factors and their subdomains among caregivers of children at various stages of CKD.

In our study, a significantly higher proportion of caregivers of children with advanced CKD (stages 3–5) reported moderate to severe depression (88.5%) compared to 21% in those caring for children with early-stage CKD (stages 1–2). Additionally, 35% of caregivers in the advanced CKD group experienced moderate to severe stress and 38% reported anxiety, whereas these symptoms were absent in the early-stage group. These findings align with the results of Mahmoud et al. who observed moderate to severe depression in 70% of caregivers¹⁸ and with the systematic review by Aldridge which confirmed elevated levels of depression, anxiety and stress among parents of children with CKD.¹⁹ Similarly, Tsai et al. found increased depressive symptoms in parents of children undergoing peritoneal dialysis (28%) compared to a control group (5%), highlighting the emotional burden associated with advanced disease stages.²⁰ In contrast, Lima et al. reported a lower prevalence of moderate to severe depression (18.4%) but a higher rate of anxiety (47%) than observed in our cohort.²¹ This discrepancy may reflect differences in caregiver awareness, health system factors or sociocultural contexts. Notably, our study adds to the existing literature by highlighting stress levels in this population, an area less frequently explored and underscores the substantial psychological toll caregiving can have, particularly in more advanced stages of CKD.

Further, our study showed families with lower SES, poor maternal education and lower family income had more stress. Similarly, Feilding et al. showed that lower SES and larger family size correlate with increased depression and anxiety in parents.²² Zengin et al. support a similar finding to our study that parents with lower SES have poorer QOL and reported more difficulty in adjusting.²³

In addition, caregivers of children with increased social impairment were found to have more depression and anxiety. Our study showed mothers were found to have more depression, anxiety and stress compared to fathers. Similar results were shown by Mahmoud et al. who reported more depression in female caregivers compared to males.¹⁸ This is primarily attributed to the sociocultural role provided to females as the leading provider of family care. Caregivers of older children (>10 years) had more depression, most likely because of the attachment the caregiver has as the child grows.

We found that caregivers of children with advanced stages of CKD reported significant reductions in their QOL, with the greatest impact observed in the domain of social relationships, followed by physical health and psychological well-being. The demands of caregiving, coupled with limited time for self-care, financial difficulties and emotional strain, contributed to these impairments. These findings are in line with a previous study by Tsai et al. where they showed lower dimensions of QOL in caregivers of CKD.²⁰ Participants of Group 2 (caregivers of children with advanced CKD stages 3–5) reported significantly poorer overall QOL in all sub-domains as compared to participants of Group 1(caregivers of children with initial CKD stages 1–2).

Similar patterns have been reported in earlier studies. For example, Parham and colleagues (2016) noted that caregiving for children with CKD often affects various aspects of a caregiver’s life, including emotional and social functioning, highlighting the multidimensional burden faced by these individuals.¹⁵ A systematic review by Aldridge (2008) also found that caregivers of children with chronic kidney failure experienced reduced QOL in emotional, social and physical domains, consistent with our findings.¹⁹

In a study by Kiliś-Pstrusińska et al. (2013), families of children on automated peritoneal dialysis described emotional stress, disrupted social lives and challenges to everyday functioning, underscoring the strain that long-term caregiving places on caregivers’ QOL.²⁴ Similarly, Zengin et al. (2018) reported that caregivers often experienced lower levels of social support and increased anxiety, both of which were linked to poorer QOL outcomes.²³

In our study, participants of both Group 1 and Group 2 opted for problem-focused coping strategies such as planful problem solving, positive reappraisal, accepting responsibility and self-controlling. A study by Zengin et al. showed that positive reframing, acceptance, humour, emotional support and similar problem-focused coping strategies were opted for by caregivers of CKD.²³ This could be explained by social and emotional support provided by family and friends, which led them to face the problem with a positive approach.

We also found that the caregiving burden was significantly higher among parents of children with advanced CKD and associated complications. Caregivers reported concerns about their role, uncertainty regarding the child’s prognosis, delayed development and disruption of schooling. Notably, higher burden was associated with lower maternal education and missed school days by the child, aligning with earlier findings that reported moderate levels of caregiver burden in similar populations.^{21, 24}

Additionally, caregivers who experienced higher burden also reported increased levels of stress, anxiety and depression, along with poorer QOL. Those using emotion-focused coping strategies, such as seeking social support or escape avoidance demonstrated higher burden compared to those who relied on problem-focused approaches. This is consistent with the stress-coping model described by Folkman and with findings from Zengin et al. emphasising the link between coping styles and caregiver outcomes in chronic paediatric illness.^{2, 23}

Association with Demographic and Clinical Variables

In our study, caregivers who reported stronger social and emotional support appeared to cope more positively, which may explain why variables such as number of siblings, type of family, disease duration and CKD-related complications did not significantly influence coping mechanisms. However, as the severity of the disease increased, caregivers were more likely to adopt emotion-focused coping strategies, such as distancing. This trend was particularly evident among those from lower socioeconomic backgrounds, possibly due to limited education, larger family sizes and a lack of knowledge regarding the disease and available support resources. These findings are consistent with Zengin et al. who reported that caregivers with limited education and inadequate social support were less able to cope effectively with paediatric CKD.²³

Caregivers from lower socioeconomic backgrounds, particularly those with lower maternal education, were more likely to use emotion-focused coping mechanisms, including distancing. This may be attributed to limited access to health information and support systems. Similar associations have been observed by Zengin et al. who reported less effective coping among caregivers with lower education and social support.²³

Advanced CKD stages and the presence of complications were significantly associated with higher caregiver burden. These families reported greater emotional and practical challenges related to ongoing care needs, which is consistent with the burden reported in earlier studies involving caregivers of children with advanced CKD.^{21, 24} Caregivers whose children experienced interruptions in schooling expressed heightened concern about their academic future, which was associated with increased psychological distress. Lower maternal education further compounded this concern, contributing to a higher perceived burden.

The type of renal replacement therapy did not significantly affect caregiver psychological outcomes. Likewise, a previous study found that the caregiver’s stress is shaped more by the emotional and logistical demands of care rather than by specific treatment modalities.²¹

Psychological challenges among caregivers of children with CKD are substantial and tend to worsen with disease severity. Without adequate mental health support, these issues may overshadow the medical condition itself and impact the child’s treatment adherence. The study was limited by its small sample size and single-centre design, which may affect the generalisability of the findings. Additionally, its cross-sectional nature restricts the ability to assess changes in caregiver burden and psychosocial outcomes over time.

Conclusion

CKD in children places a considerable psychological and social burden on caregivers, particularly in advanced stages. Strengthening social support systems and addressing caregiver mental health should be integral to paediatric CKD management. Future research with larger, multi-centre and longitudinal studies is needed to better understand evolving caregiver needs and to develop targeted interventions that support both children and their families.

Footnotes

Acknowledgement

We extend our heartfelt gratitude to all the participants, especially the parents and caregivers of children with CKD, for their invaluable time, trust and willingness to share their experiences.

Authors Contribution

BI: Inception of idea, evaluation, psychological assessment, writing initial draft, editing and revision of manuscript and final approval; RS: Inception of idea, evaluation, psychological assessment, editing and revision of the manuscript and critical revision of the manuscript at all stages of production and final approval; SK: Editing and revision of the manuscript and critical revision of the manuscript at all stages of production and final approval; LD: Editing and revision of the manuscript and critical revision of the manuscript at all stages of production and final approval; HSK: Editing and revision of the manuscript and critical revision of the manuscript at all stages of production and final approval; R: Data collection, transfer and processing; KS: Editing and revision of the manuscript and critical revision of the manuscript at all stages of production and final approval; KT: Inception of idea, evaluation, writing initial draft, editing and revision of the manuscript and critical revision of the manuscript at all stages of production and final approval; Kindly Note that Bhoomika Ishran and Rajni Sharma has contributed equally in this manuscript so they both may be considered first authors.

Consent for Publication

Yes.

Data Availability

The data supporting the findings of this study are available upon request and can be obtained from the corresponding author.

Any other identifying information related to the authors and/or their institutions, funders, approval committees and many more that might compromise anonymity.

Statement of Ethics

NK/6155?MD/789.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The authors received no financial support for the research, authorship and/or publication of this article.

Patient Consent

Written informed consent was taken.

ORCID iD

Rajni Sharma

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