“Knocking on Doors that Don’t Open”: Experiences of Caregivers of Children Living with Disabilities in Iquitos and Lima, Peru

Abstract

Background

More than one billion people worldwide live with a disability. Despite advances in recognizing inequalities experienced by people with disabilities, barriers to services and stigmatization still exist. The aims of this study were to explore: 1) perceptions and experiences of services specifically available to people with disabilities and their caregivers, and 2) the perception of disability.

Methods

In-depth interviews were conducted with 20 caregivers of persons with a disability and 14 key informants in two cities in Peru; Lima and Iquitos. The social-ecological model was used as a framework to analyze and present data, stratifying the key barriers and opportunities at each level.

Results

At the individual level, interviewees reported a lack of support at the time of diagnosis, poor coping strategies, and communicated their desire for, and willingness to, participate in support groups if they were established. On the community level, education and awareness were reportedly lacking and acts of discrimination and stigmatization were common. Participants described opportunities for community level campaigns to increase exposure and awareness of disability rights and inclusion. A dissatisfaction with government programs was reported, as services were not available to everyone, in part due to geographical and socioeconomic barriers.

Conclusion

The main findings were the lack of emotional, informational, and tangible support available to caregivers of people with disabilities, often exacerbated by lower socio-economic status; a lack of transparency of care pathways available to people with disabilities; and a lack of visibility of people with disability in both Lima and Iquitos.