Caregiver Experiences of Providing Care to a Child With Cerebral Palsy in Zambia: A Photovoice Project.

BACKGROUND

Caregivers of children living with cerebral palsy often experience challenges when living in low-resource communities, such as those found in low-and-middle-income countries. Kusamala is a home-visiting programme that supports families of children with disabilities in Makululu in Kabwe, Zambia.

METHODS

Following the nine steps of photovoice, this project aimed to consider the experiences of ten caregivers of children living with cerebral palsy who participated in a 12-month home-visiting programme. Potential recruits for this study completed an informational meeting, where they received information about photovoice and this study. During an all-day training session, participants considered the programme evaluation question, which sought to understand how Kusamala contributed to their ability to care for their child with a disability. During this time, they also provided consent to participate and received cameras and instructions on how to use them. Participants then took photos and reconvened for a focus group session, where they shared their experiences associated with each photo, identified themes and selected images for a community exhibition. The final step involved a community exhibition to share their stories and photographs with the community.

RESULTS

Participants identified three themes: Equality, Business/Having a Source of Income, and Special Care, capturing 39 images that reflected these themes. The first theme described how these caregivers understand and support the full inclusion of their children in their communities. The second theme highlights the need for a sustainable source of income, which is necessary to purchase basic needs for families. The final theme relates to how caregivers learn new skills and activities to support their child's growth and development.

CONCLUSIONS

The current study adds to the limited body of knowledge on the impact of community-based programming to help children living with cerebral palsy in a low-and-middle-income country context.