[Survey for Caregivers of People with Autism Spectrum in Chile: Access to Health and Education Services, Satisfaction, Quality of Life And Stigma].
García Ricardo, Irarrázaval Matías, López Isabel, Riesle Sofía, Cabezas Marcia, Moyano Andrea, Garrido Gabriela, Valdez Daniel, S de Paula Cristiane, Rosoli Analía, Cukier Sebastián, Montiel-Nava Cecilia, Rattazzi Alexia
What this study means for families
This study surveyed 291 families in Chile about their experiences accessing services for their autistic children. Families faced significant challenges: they paid for most therapy and educational support themselves, many parents had to quit or reduce work, and 1 in 4 families struggled to access needed services. Parents reported feeling stigma and discrimination. The top priorities families wanted were better inclusive schooling, support at home, and help with their child's social skills.
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Research summary
This Chilean survey of 291 caregivers (86% mothers) of autistic individuals examined access to health and education services, family impact, and quality of life. Key findings revealed limited access to health services, with families paying over 60% of therapy costs and 40% of educational support. Significant family income impact was reported, with 35% of caregivers resigning and 46% reducing work hours. Stigma was associated with discrimination and feelings of helplessness.
While 77% attended standard or special schools, 25% reported difficulties accessing services. Priorities for improved quality of life included inclusive schooling support, better home adjustment, and enhanced socialization opportunities.
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Key findings
- 1
Families pay for over 60% of therapies/medical care and over 40% of specific educational support
Confidence: moderateRelevance: Highlights significant financial burden on families accessing autism services in Chile - 2
Family income affected by resignation (35%) or reduced working hours (46%) among caregivers
Confidence: moderateRelevance: Demonstrates substantial economic impact of autism on family employment and financial stability - 3
25% of families report difficulties accessing services despite 77% attending standard or special schools
Confidence: moderateRelevance: Indicates persistent barriers to service access even when educational placement is achieved - 4
Stigma associated with discrimination and feelings of helplessness among caregivers
Confidence: limitedRelevance: Points to psychosocial burden beyond practical service access challenges
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Clinical implications
Findings suggest need for improved healthcare access, financial support systems, and anti-stigma initiatives in Chile. Results may inform policy development for autism services but require validation in other contexts and populations.
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Limitations
Single-country survey with potential selection bias. Study type not specified and sample representativeness unclear. No comparison groups provided. Specific measurement tools and validation status not described in abstract.
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Original abstract
People on the Autism Spectrum (AS) face multiple health, education, social, and economic pro blems. There is limited available information in Chile. To describe the access and satisfac tion with health and education services, family and economic impact, stigma, and quality of life of people with AS and their families in Chile. Parents/caregivers of AS persons completed the Caregiver Needs Survey, developed by Autism Speaks, which includes demographic information, characteristics of AS persons (previously published), use of health and education servi ces, parents/caregivers' perceptions of satisfaction, impact, stigma, and quality of life. 291 caregivers (86% mothers) of 291 AS persons participated, 89% were male, aged 1-40 years (X:10.4 SD:6.1).
Limited and unspecific access to health services is reported. 77% are regularly attending a standard or special school system. Families pay for over 60% of therapies/medical care and over 40% of specific educational support, and 25% report difficulties in accessing services. The family income is affected by resignation (35%) or reduced working hours (46%). Stigma is associated with possi ble discrimination and feelings of helplessness.
The main priorities mentioned for a better quality of life are support for inclusive schooling, better adjustment at home, and improved socialization. This survey provides relevant information about the needs, barriers, and challenges of AS people in Chile and highlights the difficulties in accessing health services and the severe impact on family income. Feelings of stigma, discrimination, and helplessness are reported. Collaborative strategies are needed to improve the quality and access to services and to reduce the economic and mental health burden on the family.
Evidence Grade
limited
Grade assigned by AutismInsights based on study type and published abstract.
Study Details
- Journal
- Andes pediatrica : revista Chilena de pediatria
- Year
- 2022
- PMID
- 35857006
- DOI
- 10.32641/andespediatr.v93i3.3994
MeSH Terms