Prevalence and predictive factors of strain among caregivers of people with disability: results from R-Care community survey, Kerala, India

Abstract

Purpose

Caregivers of people with disability experience difficulties in a variety of care domains. Understanding the predictive factors of caregiver strain is important in developing and implementing evidence-based intervention to reduce the difficulties experienced by the carers.

Methods

The current study is a cross sectional comprehensive one-phase survey conducted in randomly selected sub-districts (taluks) of the Ernakulam district in Kerala. Primary caregivers (n = 851) for persons with different kinds of disability were identified with the help of ASHAs (Accredited Social Health Activities) from the selected geographical locations and were interviewed in a house-to-house survey after obtaining written informed consent. Validated tools measuring caregiver strain, financial burden, access to services and wellbeing were used to study the population.

Results

Majority of the caregivers were females (77.3%) and spouses (35.2%). Of the caregivers 27% reported high levels of caregiver strain. The major factors associated with caregiver strain were female gender (B = 1.379, p = 0.000), financial issues (B = 0.105, p = 0.000), the general health of caregivers (B = 0.467, p = 0.000) and issues relating to employment (B = 0.956, p = 0.000) and the availability of government welfare services (B = 1.138, p = 0.000).

Conclusion

High caregiver burden and strain is experienced by almost a third of people caring for a person with a disability. Comprehensive interventions to reduce caregiver strain should be developed.

Implications for rehabilitation

1. The rehabilitation sector needs to be made aware of the high levels of caregiver strain (especially in carers who were female, unemployed, have health issues and lack formal support).

2. To improve wellbeing for people with disability we firstly need to promote social inclusion and support schemes for caregiver.

3. Co-designed systems are needed to assist carers to access formal and informal support resources, and increase social connectedness.

Keywords:

• Caregivers
• person with disability
• caregiver strain
• expressed needs
• barriers to services
• Kerala

Acknowledgments

The authors wish to thank all the volunteers and the ASHA workers who had helped in the process of data collection.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Derived data supporting the findings of this study are available from the corresponding author upon request.

Additional information

Funding

The study was supported by Rajagiri College of Social Sciences (Autonomous) and Nossal Institute for Global Health, University of Melbourne, Australia. Authors thank CHAI- The Catholic Health Association of India for their support through the sister Mary Glowrey Scholars Programme for the study.