A Cross-Sectional Study on the Quality of Life of Caregivers of Children With Disability in Chennai, India

TL;DR

This study in Chennai, India, finds that caregivers of children with disabilities have lower quality of life and higher depression rates, emphasizing the need for support.

Contribution

The study provides new insights into the quality of life, coping strategies, and depression prevalence among caregivers of children with disabilities in a specific Indian context.

Findings

Caregivers reported moderate quality of life, with significant differences based on disability type and socioeconomic status.

Emotion-focused coping strategies were most commonly used, and 33.2% of caregivers showed signs of depression.

Quality of life was notably lower in environmental and physical health dimensions.

Abstract

Background

Disability influences a person's quality of life (QoL) in social, psychological, physical, and environmental dimensions. The caregivers of the disabled person equally share the burden, and their QoL is also greatly affected, as caregivers face substantial challenges in multiple dimensions. This limits their ability to focus their attention or time elsewhere, negatively impacting their social life and overall QoL. Consequently, understanding the QoL of caregivers, the variety of strategies they used to cope, and their mental health status, particularly depression, is crucial for providing support and intervention. Thus, this community-based study is carried out in Chennai, India, to assess the QoL, coping mechanisms, and depression among caregivers of children with disabilities.

Objectives

This study was done to assess the QoL of primary caregivers of children with disabilities, the coping strategies they use, and the prevalence of depression in them.

Methodology

This study was conducted as a community-based cross-sectional study in Chennai, India, among caregivers of children with disability. Participants were primary caregivers of children with disabilities for more than two years and provided informed consent. The paid caretaker was excluded from the study. A sample of 205 was recruited after multistage random sampling. Data was collected by in-person interview using a semi-structured pretested questionnaire and also included the World Health Organization Quality of Life-BREF (WHOQOL-BREF) (total score range: 0-400), the Brief Coping Orientation to Problems Experienced (Brief-COPE) (score: 2-8), and the Center for Epidemiologic Studies Depression Scale-Revised 10-item (CESD-R10) (range: 0-30). The data obtained were entered in Microsoft Excel (Microsoft Corporation, Redmond, Washington, United States) and analyzed using IBM SPSS Statistics for Windows, Version 16.0 (SPSS Inc., Chicago, Illinois, United States). The chi-squared test was used for categorical associations, while analysis of variance (ANOVA) was used to compare group means.

Results

Among 205 caregivers, 85.9% were female, with mothers comprising 80%. Children's mean age was 8.64±4.16 years. Motor delay (26.3%) was the most common disability. The mean WHOQOL-BREF score was 170.96±59.07, and 39% of caregivers reported average QoL, both reflecting moderate subjective well-being. QoL differed significantly across disability types (F=6.57; p<0.001) and was associated with type of disability (p=0.001), number of siblings (p=0.038), and socioeconomic status (p=0.004). Emotion-focused coping (4.56±0.83) was most common, followed by problem-focused (4.05±1.16) and avoidant strategies (3.42±0.74). Depression prevalence was 33.2%, significantly associated with caregiver-child relationship (p=0.016), caregiver age (p=0.012), child's age (p=0.042), mother's occupation (p=0.042), and family size (p=0.017).

Conclusion

Caregivers of children with disabilities in Chennai have a markedly lower QoL, especially concerning environmental and physical health aspects. Caregivers mostly used the emotion-focused religious and acceptance strategies. One-third of them had a risk for depression. These findings underscore the dual burden faced by family caregivers and highlight the urgent need for comprehensive measures to support affected families. Empowering caregivers by providing psychosocial support, community integration, and financial assistance is vital.