Introduction
Cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and cause permanent impairments in body movement and muscle coordination [1]. The condition is associated with neuromuscular spasticity, cognitive dysfunction, behavioral abnormalities, speech and visual difficulties, and challenges in feeding and gastrointestinal function [2].
Globally, the prevalence of cerebral palsy is reported to range from 1.4 to 4 per 1,000 live births [3]. In the United States, over 760,000 people live with cerebral palsy, with approximately 65% being under 18 years of age [4]. In India, 3.8% of the population suffers from some form of disability. Among physically disabled children, nearly 15%-20% are affected by cerebral palsy, with an estimated incidence of approximately 3 per 1,000 live births [5].
Although caregiving is a normal aspect of parenting, caring for a child with cerebral palsy can be an exhausting and challenging process for caregivers [6]. Children with cerebral palsy often experience limitations in basic activities such as feeding, bathing, dressing, and mobility, which require long-term care and greater parental attention compared to typically developing children [7]. The constant need for assistance, coupled with high expectations for treatment outcomes and concerns about the future, can lead to increased stress, anxiety, and depression among caregivers, ultimately impacting their quality of life (QOL) [8]. Moreover, cerebral palsy imposes an economic burden and affects the physical, psychological, and social health of caregivers, as well as the time they devote to caregiving [9].
In India, there is a paucity of data comparing the anxiety, depression, and QOL of caregivers of children with cerebral palsy to those of caregivers of typically developing children. To the best of our knowledge, no previous studies have examined these differences. Therefore, our study aimed to compare anxiety, depression, and QOL between the two groups.
Materials and Methods
1. Study design
This cross-sectional, comparative study was conducted among caregivers of children with cerebral palsy and caregivers of typically developing children at the Pediatric Medicine Outpatient Department of the All India Institute of Medical Sciences, New Delhi. Ethical approval was obtained from the Institutional Ethical Committee, and confidentiality of participant information was maintained (Ref. no. IECPG-58/27.02.2020, RT-11/23.04.2020 & Institute Ethics Committee for Post Graduate Research AIIMS, New Delhi). Informed verbal consent was obtained from each participant telephonically.
2. Case selection
Caregivers of children aged 3 to 18 years diagnosed with cerebral palsy, as well as caregivers of typically developing children in the same age range, were recruited using a convenience sampling technique. Caregivers of critically ill children with two or more comorbidities and caregivers of typically developing children with life-threatening or chronic systemic illnesses were excluded. Demographic details for both caregivers and children were recorded, and data were collected telephonically due to the coronavirus disease 2019 (COVID-19) pandemic. A pilot study involving six participants was conducted in August 2020 to assess feasibility and determine the sample size, which was calculated to be 30 in each group. A P value of <0.05 was considered significant. Data collection occurred from August 2020 to February 2021.
Data were collected using several instruments, including a socio-demographic profile sheet, the Generalized Anxiety Disorder-7 (GAD-7) tool, the Patient Health Questionnaire-9 (PHQ-9), and the World Health Organization Quality of Life-BREF (WHOQOL-BREF) tool. The GAD-7 tool, comprising seven questions, measured the level of anxiety. Each item offered four response options: not at all (0 points), several days (1 point), more than half the days (2 points), and nearly every day (3 points). Total scores ranged from 0 to 21, with scores of 0-4 indicating minimal anxiety, 5-9 mild anxiety, 10-14 moderate anxiety, and 15-21 severe anxiety.
The PHQ-9, consisting of nine questions, was employed to assess the presence and severity of depression. Each item offered four response options: not at all (0 points), several days (1 point), more than half the days (2 points), and nearly every day (3 points). Total scores range from 0 to 27, with 0-4 indicating no depression, 5-9 mild depression, 10-14 moderate depression, 15-19 moderately severe depression, and 20-27 severe depression.
QOL was assessed using the WHOQOL-BREF tool, a 26-item questionnaire employing a 5-point Likert scale. It evaluates overall QOL, health satisfaction, and four specific domains: physical health, psychological health, social relationships, and environment. Each domain is scored from 0 (worst QOL) to 100 (best QOL).
3. Statistical analysis
Data were analyzed using STATA version 15 (StataCorp., College Station, TX, USA). Descriptive statistics—including frequency, percentage, mean, and standard deviation—were calculated for demographic variables. Fisher’s exact test, the chi-square test, and independent t-tests were employed to determine statistical significance and assess associations. A P value of <0.05 was considered statistically significant.
Results
The mean age of caregivers for children with cerebral palsy was 33.63±6.94 years, compared to 32.00±5.00 years for caregivers of typically developing children. The majority of caregivers in both groups were mothers (46.67% in the cerebral palsy group and 76.67% in the typically developing group). Most caregivers had attained a higher secondary education (43.33% for the cerebral palsy group and 53.33% for the typically developing group), and the majority were housewives (46.67% and 50%, respectively).
Most caregivers in both groups were Hindu (93.33% each) and resided in urban areas (80% in the cerebral palsy group and 93.33% in the typically developing group). Additionally, 63.33% of caregivers in the cerebral palsy group lived in nuclear families, whereas 53.33% of caregivers in the typically developing group lived in joint families. Within the cerebral palsy group, 40% of caregivers reported a family monthly income of 10,000 to 20,000 rupees, 70% had a male child, and 60% had two children. In the typically developing group, 36.67% reported a family monthly income of 20,000 to 30,000 rupees, 53.33% had a male child, and 80% had two children. The mean age of children with cerebral palsy was 5.86±2.48 years, compared to 4.80±1.32 years for typically developing children (Table 1).
Fig. 1 displays the levels of anxiety as assessed by the GAD-7 tool. In the cerebral palsy group, 53.33% of caregivers experienced mild anxiety, 36.67% experienced moderate anxiety, and 6.67% experienced severe anxiety. In contrast, in the typically developing group, only 6.67% of caregivers experienced mild anxiety, while 93.33% exhibited no or minimal anxiety.
Fig. 2 illustrates the levels of depression as measured by the PHQ-9 tool. In the cerebral palsy group, 40% of caregivers experienced mild depression, 36.67% experienced moderate depression, and 6.67% experienced moderately severe depression. In the typically developing group, only 16.67% experienced mild depression, with 83.33% exhibiting no or minimal depression. The frequency distribution based on overall QOL and health satisfaction showed that 83.33% of caregivers in the cerebral palsy group had poor QOL, compared to 96.67% of caregivers in the typically developing group who had good QOL. Additionally, 60% of caregivers in the cerebral palsy group were satisfied with their health, whereas all caregivers in the typically developing group reported health satisfaction (Table 2).
A comparison of anxiety levels revealed that the mean anxiety score for caregivers in the cerebral palsy group was 9.40±3.21, while that for caregivers in the typically developing group was 1.40±1.30. This difference was statistically significant (P<0.001), indicating that caregivers of children with cerebral palsy experience higher anxiety levels (Table 3).
Similarly, the mean depression score for caregivers in the cerebral palsy group was 8.56±3.68, compared to 1.70±1.68 in the typically developing group. This difference was statistically significant (P<0.001), suggesting that caregivers of children with cerebral palsy experience higher levels of depression (Table 4).
The mean scores for QOL domains among caregivers of children with cerebral palsy were 63.53±9.36 for physical health, 62.40±7.04 for psychological health, 71.56±8.43 for social relationships, and 51.73±9.03 for the environmental domain. In contrast, caregivers of typically developing children scored 90.60±6.97, 90.33±7.19, 94.00±8.64, and 85.16±7.93, respectively. The differences in all domains were statistically significant (P<0.001) (Table 5).
Discussion
Caregivers play a crucial role in child care, and primary caregiving is typically provided by mothers—a finding that aligns with the present study [10-12]. The study found that mothers experience higher levels of anxiety and depression compared to fathers, a result consistent with previous research [13].
Using the GAD-7 scale, the present study found that among caregivers of children with cerebral palsy, 53.33% had mild anxiety, 36.67% had moderate anxiety, and 6.67% had severe anxiety. Notably, the proportion of caregivers with mild anxiety was higher compared to a previous study [14], possibly due to the use of a different measurement tool (i.e., the Beck Anxiety Inventory) in that study.
The prevalence of depression among caregivers of children with cerebral palsy in the present study was 40% for mild depression, 36.67% for moderate depression, and 6.67% for moderately severe depression, which supports findings from previous studies [15].
QOL was assessed across various domains among caregivers of children with cerebral palsy. The results indicated poor QOL in all domains, with mean scores of 63.53±9.36 for physical health, 62.40±7.04 for psychological health, 71.56±8.43 for social relationships, and 51.73±9.03 for the environmental domain. These findings are consistent with a previous study [16], which reported mean scores of 66.81±12.98, 60.52±15.91, 62.99±18.29, and 58.31±13.30 for the corresponding domains, respectively.
The present study demonstrated that caregivers of children with cerebral palsy exhibit significantly higher levels of anxiety and depression compared to caregivers of typically developing children, consistent with other studies [17-19]. In addition, the QOL in the cerebral palsy group was significantly lower than that of the typically developing group, which aligns with findings from other research [20,21].
In conclusion, caregivers of children with cerebral palsy experience considerable anxiety, depression, and poor QOL. These factors may further compromise the caregivers’ own health and the quality of care provided to the children. Although stress is inevitable, identifying caregivers at risk of negative outcomes allows for early intervention to mitigate adverse effects on their health and well-being.
Future research could involve a large-scale, multicenter study with a larger sample size, as well as qualitative studies to gain deeper insights into the experiences, perceived health effects, and coping mechanisms of caregivers of children with cerebral palsy. The present study also underscores the need for interventional studies aimed at enhancing coping skills and improving the mental health of these caregivers. The single-center design of this study limits its generalizability, and the use of convenience sampling introduces a potential risk of bias.
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