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Caregiver burden and quality of life in parents of children with intellectual disability and autism spectrum disorder: A cross-sectional comparative study
* Corresponding author: Dr. Charvi Kalra, Department of Psychiatry, Institute of Human Behavior and Allied Sciences, Dilshad Garden, New Delhi, 110095, India. kalracharvi11@gmail.com
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Received: ,
Accepted: ,
How to cite this article: Kalra C, Kumar D, Gehlawat P, Malhotra S. Caregiver burden and quality of life in parents of children with intellectual disability and autism spectrum disorder: A cross sectional comparative study. Future Health. 2025;3:64-8. doi: 10.25259/FH_71_2025
Abstract
Objectives
Parents of children with intellectual disability (ID) and autism spectrum disorder (ASD) frequently report high caregiver burden, stress, and a diminished quality of life (QoL), yet comparative data are scarce in low-resource settings. This study evaluated and compared caregiver stress, burden, and QoL among parents of children with ID and ASD.
Material and Methods
A cross-sectional study was conducted at a tertiary psychiatric center in India. Ninety parents of children aged 5–18 years with DSM-5-diagnosed ID (n = 60) or ASD (n = 30) were recruited from outpatient services through non-probability purposive sampling. Exclusion criteria included parental psychiatric illness, severe medical illness, or unwillingness to participate, and children with significant neurological comorbidities. Sociodemographic and clinical information were obtained using a semi-structured proforma. Parenting stress was measured with the Parenting Stress Scale; caregiver burden was assessed using both the Kingston Caregiver Stress Scale (KCSS) and the Family Burden Interview Schedule (FBIS). Parental quality of life was evaluated using the WHOQoL-BREF (physical, psychological, social, and environmental domains). Statistical analyses were performed using SPSS, with t tests or Mann–Whitney U tests for group comparisons and effect sizes calculated.
Results
Both groups were comparable in age, marital status, family structure, and parental occupation; however, parents of children with ID were more often from lower socioeconomic strata (p = 0.027). Mean Parenting Stress Scale scores did not differ significantly between ID (52.57 ± 14.65) and ASD (53.13 ± 10.38) groups (p = 0.832), indicating similar perceived parenting stress. Caregiver burden measured by KCSS and FBIS was also comparable between groups (KCSS medians 35 vs 36; FBIS means 35.47 vs 37.27; p > 0.07). In contrast, parental QoL differed markedly. Across all WHOQoL-BREF domains, parents of children with ASD reported significantly lower scores than those of children with ID: physical domain means 19.80 vs 34.60 (p < 0.001); psychological 19.84 vs 33.05 (p < 0.001); social 21.00 vs 31.84 (p < 0.001); and environmental 25.68 vs 32.01 (p < 0.001). Effect sizes ranged from medium to large (0.38–0.63), demonstrating substantial QoL disparities.
Conclusion
While parenting stress and caregiver burden were similar among parents of children with ID and ASD, quality-of-life deficits were markedly greater in parents of children with ASD. These findings highlight the need for targeted psychosocial interventions to improve the well-being of caregivers, particularly in families of children with ASD. Screening for socioeconomic disadvantage and providing support services may mitigate the adverse impact on caregivers’ physical, psychological, social, and environmental well-being.
Keywords
Autism spectrum disorder
Caregiver burden
Intellectual disability
Parenting stress
Quality of life
INTRODUCTION
Intellectual disability (ID) and autism spectrum disorder (ASD) are lifelong neurodevelopmental disorders that significantly impair social, cognitive, and adaptive functioning. Children with ID display deficits in intellectual functioning (IQ < 70) and adaptive behavior, whereas those with ASD exhibit persistent deficits in social communication and restricted, repetitive patterns of behavior. According to global estimates, the prevalence of ASD is approximately 7.5 per 1000 population, while ID affects about 1–3% of individuals worldwide. Caring for children with these disorders poses substantial challenges that extend beyond the clinical symptoms and have profound implications for the well-being of the family. Parents often experience high levels of stress due to the child’s behavioral problems, demands for constant supervision, and therapeutic interventions. Prolonged caregiving is associated with emotional exhaustion, financial strain, and social isolation, collectively termed caregiver burden.
Research suggests that parents of children with neurodevelopmental disorders face greater psychological distress and lower quality of life (QoL) compared with parents of typically developing children. In one Indian cohort, parents of children with ASD reported greater stress and depressive symptoms than those of children with ID. However, findings from international studies remain inconsistent, partly because of variations in methodology, measures, and sociocultural contexts. Most studies have focused on single diagnoses, limiting cross-diagnostic comparisons. Moreover, few investigations have examined the multidimensional aspects of QoL, which include physical, psychological, social, and environmental domains, as defined by the World Health Organization. Understanding the differential impact of various neurodevelopmental disorders on caregivers is essential for designing tailored interventions.
The present study sought to fill this gap by comparing caregiver stress, burden, and QoL in parents of children with ID and those with ASD in a tertiary care setting in India. The study also explored sociodemographic correlates of caregiver burden. We hypothesized that (i) parents of children with ASD would report higher parenting stress and caregiver burden than parents of children with ID, and (ii) parental QoL would be poorer in the ASD group. A cross-sectional design was chosen to allow a comprehensive assessment of these domains using validated instruments. By elucidating similarities and differences between these caregiver groups, we aimed to inform clinical services and policy initiatives that address the needs of families affected by neurodevelopmental disorders.
MATERIAL AND METHODS
Study design and setting
This cross-sectional comparative study was conducted between January and September 2024 at the outpatient department of the Institute of Human Behavior & Allied Sciences (IHBAS), a tertiary psychiatric hospital in Delhi, India. The institutional ethics committee approved the study protocol in accordance with the Declaration of Helsinki (2000 revision). All participants provided written informed consent prior to enrolment.
Participants
Parents (preferably mothers) of children aged 5–18 years diagnosed with ID or ASD according to DSM-5 criteria1 were approached during routine outpatient visits. Inclusion criteria were: (1) parent aged ≥ 18 years who is the primary caregiver and has lived with the child for at least one year, and (2) ability to understand Hindi or English. Exclusion criteria were: (1) parent with a prior psychiatric diagnosis or critical medical illness, (2) refusal to participate, and (3) child with severe physical disability or neurological comorbidity (e.g., seizure disorder). Diagnoses were confirmed by consultant psychiatrists using DSM-5 and, for ID, intelligence testing (IQ < 70) according to standardized instruments.
Purposive sampling was used. Over nine months, 90 parents met eligibility criteria and consented to participate: 60 parents of children with ID and 30 parents of children with ASD. Sample size was based on a prevalence-based calculation using the Krejcie–Morgan formula,2 ensuring adequate power to detect moderate effect sizes between groups.
Measures
Sociodemographic and clinical details were recorded using a semi-structured questionnaire. Four validated instruments were administered by trained interviewers:
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1.
Parenting Stress Scale (PSS; Berry & Jones, 1995)3 – A 12-item self-report scale measuring positive and negative aspects of parenthood. Each item is rated on a 5-point Likert scale (strongly disagree = 1 to strongly agree = 5); higher total scores indicate greater parenting stress.
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2.
Kingston Caregiver Stress Scale (KCSS) – A 10-item scale assessing caregiver stress in three domains (care demands, role conflict and personal strain). Items are rated 1–5; total scores range from 10 to 50, with higher scores reflecting greater stress.
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3.
Family Burden Interview Schedule (FBIS; Pai & Kapur, 1981)4 – A structured interview containing items across objective and subjective burden domains, rated 0–5. Higher scores represent greater family burden.
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4.
WHO Quality of Life-BREF (WHOQoL-BREF)5 – A 26-item instrument assessing four domains: physical health, psychological health, social relationships and environment. Each domain score is transformed to a 0–100 scale; higher scores denote better QoL.
The instruments were administered individually in the participants’ preferred language (Hindi or English), with an assessment time of approximately 1–2 hours. Cronbach’s alpha values for the Hindi versions used in this study were 0.79 (PSS), 0.83 (KCSS), 0.86 (FBIS) and 0.88 (WHOQoL-BREF), indicating good internal consistency.
Statistical analysis
Data were entered into SPSS (version 22; IBM Corp., Armonk, NY, USA). Continuous variables were examined for normality using the Kolmogorov–Smirnov test. Means and standard deviations (SD) or medians and interquartile ranges (IQR) were computed as appropriate. Categorical variables were summarized using frequencies and percentages. Group comparisons employed independent-samples t tests or Mann–Whitney U tests for continuous variables and chi-square or Fisher’s exact tests for categorical variables. Point-biserial correlations were calculated to estimate effect sizes; a value of 0.10 was considered small, 0.30 medium and 0.50 large. Statistical significance was set at p < 0.05 (two-sided).
RESULTS
Sociodemographic characteristics
Participants’ characteristics are presented in Table 1. Parents in both groups were predominantly mothers (ID: 83.3%; ASD: 86.7%) with a mean age of 34.5 ± 6.8 years. No significant differences were observed in parental age, marital status, education level, occupation, type of family or residence (p > 0.05). However, socioeconomic status differed: 65% of parents of children with ID belonged to lower-middle or lower socioeconomic classes, whereas 60% of ASD parents were from upper-middle or upper classes; this difference was significant (p = 0.027). The distribution of children’s age, gender and birth order did not differ significantly between groups.
| Characteristic | ID group (n = 60) | ASD group (n = 30) | p value |
|---|---|---|---|
| Mean age of parent (years) | 34.2 ±6.7 | 35.1 ±7.0 | 0.53 |
| Gender, n (%) mothers | 50 (83.3 %) | 26 (86.7 %) | 0.74 |
| Education ≥ secondary, n (%) | 34 (56.7 %) | 21 (70.0 %) | 0.21 |
| Married, n (%) | 58 (96.7 %) | 28 (93.3 %) | 0.57 |
| Lower-middle or lower socioeconomic status, n (%) | 39 (65.0 %) | 12 (40.0 %) | 0.027 |
| Nuclear family, n (%) | 38 (63.3 %) | 17 (56.7 %) | 0.54 |
| Urban residence, n (%) | 42 (70.0 %) | 19 (63.3 %) | 0.52 |
Statistical significance was set at p < 0.05
Parenting stress and caregiver burden
Table 2 shows descriptive statistics for parenting stress and caregiver burden. Mean Parenting Stress Scale scores were nearly identical between groups (ID: 52.57 ± 14.65; ASD: 53.13 ± 10.38; p = 0.832), indicating similar levels of parenting stress. KCSS scores exhibited a trend toward higher stress in ASD parents (median 36, IQR 34–38) compared with ID parents (median 35, IQR 30–39), but the difference did not reach statistical significance (p = 0.079). FBIS scores showed a comparable pattern (ID: 35.47 ± 6.00; ASD: 37.27 ± 3.44; p = 0.075), suggesting that subjective and objective burden were similar across groups. Effect sizes for the differences in stress and burden were small (point-biserial correlations 0.02–0.22), underscoring minimal clinically meaningful differences.
| Measure | ID group (n = 60), mean ± SD (median) | ASD group (n = 30), mean ± SD (median) | Test statistic (p value) |
|---|---|---|---|
| Parenting stress scale total score | 52.57 ±14.65 (51) | 53.13 ± 10.38 (52) | t = -0.21 (0.832) |
| Kingston caregiver stress scale (total) | 34.00 ±6.39 (35) | 36.70 ±3.85 (36) | W = 695 (0.079) |
| Family burden interview schedule (total) | 35.47 ±6.00 (36) | 37.27 ±3.44 (37) | t = -1.80 (0.075) |
Statistical significance was set at p < 0.05
Quality of life
Parents’ quality of life scores is summarized in Table 3. Across all WHOQoL-BREF domains, parents of children with ASD reported significantly lower QoL than parents of children with ID. Physical health scores averaged 19.80 ± 3.87 in the ASD group compared with 34.60 ± 10.34 in the ID group (p < 0.001). Psychological health scores were 19.84 ± 3.00 in ASD versus 33.05 ± 12.81 in ID parents (p < 0.001). Social relationships averaged 21.00 ± 3.80 for ASD versus 31.84 ± 13.17 for ID parents (p < 0.001), and environmental QoL was 25.68 ± 3.45 versus 32.01 ± 8.77, respectively (p < 0.001). Effect sizes were large for physical (0.63) and psychological domains (0.51) and medium for social (0.43) and environmental domains (0.38), indicating clinically meaningful differences.
| Domain | ID group (n = 60), mean ± SD | ASD group (n = 30), mean ± SD | Test statistic (p value) | Effect size |
|---|---|---|---|---|
| Physical health | 34.60 ±10.34 | 19.80 ±3.87 |
t = 8.95 (p< 0.001) |
0.63 |
| Psychological health | 33.05 ±12.81 | 19.84 ±3.00 | t = 7.58 (p< 0.001) | 0.51 |
| Social relationships | 31.84 ± 13.17 | 21.00 ±3.80 | t = 5.90 (p< 0.001) | 0.43 |
| Environment | 32.01 ±8.77 | 25.68 ±3.45 | t = 4.89(p< 0.001) | 0.38 |
DISCUSSION
This study examined caregiver stress, burden and quality of life among parents of children with intellectual disability and those with autism spectrum disorder in a tertiary care setting in India. Contrary to our first hypothesis, parenting stress and caregiver burden did not differ significantly between the two groups. Both groups reported high levels of stress on the Parenting Stress Scale, with mean scores comparable to those observed in international samples of parents of children with neurodevelopmental disorders.6,7 The absence of group differences suggests that regardless of diagnostic category, the daily responsibilities of caring for a child with developmental challenges are equally taxing. This aligns with earlier findings that the severity of behavioral problems and functional impairments, rather than diagnostic label, predicts caregiver stress and burden.8 The small effect sizes observed for KCSS and FBIS underscore the negligible clinical difference in caregiver burden.
In contrast, significant group differences emerged in quality of life across physical, psychological, social and environmental domains. Parents of children with ASD had markedly poorer QoL than those of children with ID, with large effect sizes in physical and psychological domains. These findings partially support our second hypothesis and corroborate reports that caregivers of children with ASD experience greater disruption in daily activities, more health problems and greater emotional distress compared with caregivers of children with other disabilities. The greater QoL impairment in ASD parents may stem from the core features of ASD, such as social communication deficits, repetitive behaviors and sensory sensitivities, which demand constant vigilance and limit participation in social and leisure activities. Additionally, the lack of societal understanding and stigma associated with ASD may heighten social isolation and environmental stress.
Socioeconomic differences likely contributed to the observed QoL disparities. A significantly larger proportion of parents of children with ID belonged to lower-middle or lower socioeconomic classes, while parents of children with ASD were more often from higher socioeconomic strata. Lower socioeconomic status is generally associated with greater caregiver burden and poorer QoL, yet in our sample, QoL was worse in the relatively affluent ASD group. This suggests that the specific challenges of ASD may outweigh the protective effect of socioeconomic advantage. Conversely, parents of children with ID may have adapted better to caregiving demands due to more widespread awareness, support networks and acceptance of ID compared with ASD. Cultural factors may also play a role; extended family support in India may buffer the impact of ID on caregivers.
The overall high levels of stress and burden across groups highlight the urgent need for supportive services. Interventions such as psychoeducation, skills training, respite care and peer support groups may alleviate caregiver strain. For parents of children with ASD, targeted programs addressing behavioral management, social skills and community integration could improve QoL. Given the significant deficits in physical and psychological health, caregivers would benefit from routine screening for depression, anxiety and health problems and appropriate referrals. Policymakers should consider financial assistance, respite services and inclusive education policies to reduce the burden on families.
Strengths and limitations
The study’s strengths include its focus on a largely neglected population, the use of validated multidimensional measures of stress, burden and QoL, and the comparative approach within a single cultural context. However, several limitations warrant caution. First, the cross-sectional design precludes causal inferences and does not capture changes over time. Second, the sample size, particularly of the ASD group, was modest and derived through non-probability sampling, limiting generalizability. Third, reliance on self-report measures introduces the possibility of reporting bias, and clinical assessment of parental psychiatric morbidity was not undertaken. Fourth, the study did not assess children’s adaptive functioning or behavioral problems, which may mediate caregiver outcomes. Finally, sociocultural norms specific to India may limit extrapolation to other settings.
Comparison with previous studies and implications
Our finding of comparable caregiver burden across diagnoses diverges from some Western studies reporting higher burden in ASD caregivers8 but aligns with others that found no diagnostic differences when controlling for problem behaviors.9 The marked QoL deficits in ASD caregivers echo findings from global research10 but emphasize the magnitude of impairment in Indian families. The results underscore that interventions should address not only parenting stress but also broader domains of QoL, particularly physical and psychological health. Future longitudinal studies should examine trajectories of caregiver burden and QoL and explore the mediating roles of child behavior, social support and coping strategies. Qualitative research could provide nuanced insights into cultural factors shaping caregiver experiences.
CONCLUSION
In this cross-sectional comparative study of parents of children with intellectual disability and autism spectrum disorder, parenting stress and caregiver burden were similarly high across groups, but quality of life deficits was significantly greater in caregivers of children with ASD. These findings suggest that while the caregiving experience is universally stressful, the unique challenges associated with ASD have a disproportionate impact on caregivers’ physical, psychological, social and environmental well-being. Health professionals should routinely assess caregiver burden and QoL and provide tailored interventions, with particular attention to parents of children with ASD. Further research is required to elucidate causal pathways and to develop culturally appropriate support programs.
Acknowledgement
We thank all the parents who participated in this study and the staff of the Institute of Human Behavior & Allied Sciences for their assistance in data collection. We also acknowledge the guidance provided by faculty members in the Department of Psychiatry.
Author contributions
DK: Study conception, design, and methodology; CK: Data acquisition, data analysis, interpretation, and initial manuscript drafting; DK, PG, and SM: Critical analysis of the study and mentorship.
Ethical approval
The research/study approved by the Institutional Review Board at Institute of Human Behavior and Allied Sciences, number IEC-IHBAS 2023/4/22/V-1, dated 28th April 2023.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form, the patients have given their consent for their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
Use of artificial intelligence (AI)-assisted technology for manuscript preparation
The authors confirm that they have used artificial intelligence (AI)-assisted technology solely for language refinement and to improve the clarity of writing. No AI assistance was employed in the generation of scientific content, data analysis or interpretation.
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