OTQualitativeDisability and rehabilitation2019

"Knocking on Doors that Don't Open": experiences of caregivers of children living with disabilities in Iquitos and Lima, Peru.

Ines M Aguerre, Amy R Riley-Powell, Caroline T Weldon and 6 others

PMID 29909702

WHAT IT FOUND

Caregivers and key informants in Peru described little emotional or tangible support at diagnosis, confusing access to services, and stigma.

They wanted caregiver support groups, clearer routes to help, and community education. No treatment outcomes were measured.

Key findings

01Caregivers and key informants described a lack of emotional, informational, and tangible support for families at diagnosis.

02The most recurrent theme among interviews was the lack of services available to people with disabilities.

03Participants wanted caregiver support groups and clearer routes to services and support.

STILL TO COME

How it was doneWhat they foundWhat it means for OTs

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What it does not show

The study interviewed participants only in capital cities, not rural or remote areas, so experiences elsewhere may differ. No formal sociodemographic data were collected, so the analysis could not stratify access by income, family structure, disability type, or age. Most observed caregivers were supporting a person with an intellectual disability, so findings may not apply to other disabilities. Recruitment in Iquitos relied on schools for children with disabilities and snowball sampling, limiting the sample to families connected to those settings. Some recordings were lost and field notes were used instead, which may reduce detail. The interview guides were not developed using the social ecological model used to organize results, so some themes may have been missed. The research team members were native Spanish speakers but not Peruvian, so cultural and language barriers needed local support.

Declared interests

All authors declared no conflict of interest.

The easy way to misread this

Do not read the participants' desire for support groups or education campaigns as evidence that these services improve outcomes. The study reported experiences and suggestions, not measured effects.

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