Impact of a family-centred early intervention programme in South India on caregivers of children with developmental delays

Abstract

Background

This study evaluated the impact on caregiver strain and family empowerment among caregivers of children with disabilities who received training and education as part of a family-centred community-based early intervention programme in South India.

Methods

This prospective open cohort longitudinal study compared change from baseline to two years post-intervention among caregivers of the first cohort of children who were enrolled in the programme. Paired t-tests determined effect on the Modified Caregiver Strain Index (MCSI) and Family Empowerment Scale (FES), and p-values were adjusted for multiple comparisons using the False Discovery Rate approach.

Results

Of the 308 caregivers (91% women), 44% provided care to children with cerebral palsy and 56% to children with other developmental delays. The mean age of the children at baseline was 3.3 (±1.5 years). The overall mean change from baseline in the FES was 4.1 (95% CI: 3.3, 4.9; p < 0.001) representing improved empowerment. The mean change for the MCSI score was −3.7 (95% CI: −4.5, −2.9; p < 0.001) representing reduced caregiver strain.

Conclusions

A family-centred early intervention programme that provides training and education to caregivers of children with developmental delays demonstrated positive change in caregiver strain and family empowerment.

Implications for Rehabilitation

• The well-being of a child is influenced by the well-being of their caregiver.

• Improving caregiver well-being can help improve care and support for children with developmental delays.

• A family-centred early intervention therapy programme that includes training and education to caregivers can reduce strain and improve family empowerment.

Keywords:

• Disability
• community-based rehabilitation
• family empowerment
• strain
• early intervention

Acknowledgements

We acknowledge the boys and girls with developmental delays and their caregivers who shared their experiences and participated in the evaluation of Amar Seva Sangam's village based early intervention programme. We also acknowledge Handi-care International as collaborators for this study. We appreciated the input and guidance received by Anuraj Shankar and Ronald Bosch and the other peer mentors during the Grand Challenges Canada Savings Brain Workshop on Data Presentation, Analysis and Writing, March 2019.

Disclosure statement

In accordance with Taylor & Francis policy and our ethical obligation as researchers, we disclose that the following authors are employed by Amar Seva Sangam, the organization that may be affected by the research reported in this paper. These authors are Muthukaruppan, Bharathwaj, Poomariappan, Mariappan, Ponnusamy, Raman and Srinivasan. We have disclosed those interests fully to Taylor & Francis, and have in place strategies for managing any potential conflicts arising from their involvement.

Notes

1 p-values are adjusted for multiple comparisons using the False Discovery Rate approach

Additional information

Funding

This study was funded by Saving Brains, Handi-Care International, Vodafone Foundation, City Union Bank, Amar Foundation, Azim Premji Philanthropic Initiative and private donors. Saving Brains is a partnership of Grand Challenges Canada, Aga Khan Foundation Canada, the Bernard van Leer Foundation, the Bill & Melinda Gates Foundation, The ELMA Foundation, Grand Challenges Ethiopia, the Maria Cecilia Souto Vidigal Foundation, the Palix Foundation, the UBS Optimus Foundation, World Vision Canada and Nasscom Foundation.