“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 recognising inequalities experienced by people with disabilities, barriers to services and stigmatisation 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 analyse 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 stigmatisation were common. Participants described opportunities for community-level campaigns to increase exposure and awareness of disability rights and inclusion. A dissatisfaction with government programmes was reported, as services were not available to everyone, in part due to geographical and socio-economic barriers.

Conclusions: 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.

Implications for Rehabilitation

• Support groups could offer additional support to caregivers of people with disabilities in Lima, mitigating existing gaps in services for people with disabilities, and their families.

• Education campaigns implemented on a community level could start to curb discrimination and stigmatisation of people with disabilities in Lima and Iquitos.

• A national census with inclusive language and methodology specifically designed to capture the percentage of the population currently living with a disability would give a real indication of what services are needed in Peru.

• The provision of clear, publically available routes of attention would assist caregivers and families to access services for people with disabilities.

Keywords:

• Disability
• access
• Healthcare
• discrimination
• International Health
• Peru

Acknowledgements

We want to take this opportunity to extend our deepest thanks to all the participants in this study for sharing their experiences with us and taking the time to participate. We would like to express our gratitude to the team at PRISMA for sharing their experience with us, and the team at Kallpa for opening their doors to us and teaching us so much. Thank you to Dr. Hugo Razuri, Milagros Castillo, and the entire UNICEF Peru team for their support with recruitment and developing our understanding about disability in the Peruvian context.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was funded by the Minority Health International Research Training Program award based in the National Institute on Minority Health and Health Disparities (“Tulane-Xavier Minority Training in International Health”; T37 MD001424).