Quality of life of caregivers of differently abled children: Mixed-method study done in Kerala.

Abstract

Context: According to the 2011 Census, 2.21% of India's population and 2.28% of Kerala's population are differently abled, with 3% of Indian children aged 1-14 experiencing developmental delays. Differently abled children require intensive, long-term care, often impacting caregivers' quality of life (QoL). Assessing and improving caregiver QoL is essential for enhancing outcomes for both caregivers and children.

Aims: (1) To study the QoL of caregivers of differently abled children of Kozhikode, Kerala and (2) to assess caregiver burden by focus group discussion of caregivers.

Settings and design: A mixed-method study was conducted among 115 caregivers of differently abled children in Kozhikode's special schools from July 2021 to May 2022, using cluster sampling.

Subjects and methods: Quantitative data were collected via a pretested questionnaire, with QoL assessed by the WHOQOL-BREF scale. Caregiver burden was qualitatively explored through focus group discussions, followed by manual content analysis of transcripts.

Statistical analysis used: Quantitative data was analysed using SPSS'26.

Results: Caregivers of differently abled children reported lower QoL compared to caregivers of normal children, with the psychological domain scoring lowest (59.86 ± 19.45), followed by physical (66.52 ± 19.30), social (69.29 ± 25.39), and environmental (71.75 ± 17.87) domains. FGDs revealed issues in psychological, physical, child-related, social, financial, and policy areas.

Conclusion: Caregivers of differently abled children, especially parents, experience reduced QoL, with psychological well-being most affected due to stress, worry about the child's future, and social stigma. Policies must prioritise support for both caregivers and children while advocating for inclusive education to foster an inclusive, stigma-free society.