Abstract #20939, IMFAR 2016
Implementation of the Latin American Autism Spectrum Network Caregiver Needs Survey 1 Rattazzi ,
2,3 Paula ,
4 Sepúlveda ,
5 Garrido ,
6 Montiel-Nava ,
7,8 Valdez ,
A. C.S. R.A. García G. C. D. 9 1 2,3 4,10 11 5 A. Rosoli , S.H. Cukier , G. Rodrigues da Cunha , M. Irrazaval , M. Rodriguez , V. Besio 1PANAACEA,
Buenos Aires, Argentina 2Federal University of Sao Paulo, Sao Paulo, Brazil 3Mackenzie Presbyterian University, Sao Paulo, Brazil 4Universidad de Chile, Santiago, Chile 5Universidad de la República, Montevideo, Uruguay 6La Universidad del Zulia, Maracaibo, Venezuela 7FLACSO, Buenos Aires, Argentina 8UBA, Buenos Aires, Argentina 9OEI, Santo Domingo, Dominican Republic 10Millenium Institute for Research in Depression and Personality, Santiago, Chile 11Hospital Británico, Montevideo, Uruguay
Background
Results
ASD knowledge, services and research infrastructure in Latin America are limited and unevenly distributed. In 2015, researchers from Argentina, Brazil, Chile, Uruguay, Venezuela and Dominican Republic constituted the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica – REAL) in order to conduct international research collaborations related to ASD. The first project undertaken by REAL was the translation, adaptation and implementation of the AS Caregiver Needs Survey. The AS Caregiver Needs Survey was developed by Autism Speaks to assess the needs of families affected by autism in partner countries of its Global Autism Public Health Initiative. It is intended for parents or primary caregivers of individuals with a professional diagnosis of autism spectrum disorder. After translation, adaptation, back translation and pilot testing of the survey, REAL researchers reached a final version by consensus, taking into account caregiver suggestions collected during the pilot phase.
General information
Demographics of individuals with ASD N=786
N=147
N=1243
N=382
N=292
N=115
N: 147 (5%)
N: 115 (4%)
N: 1243 (42%)
Number of surveys by country (%) 4%
ArgenCna
13% N: 292 (10%)
Objectives
26% N: 786 (26%)
N: 382 (13%)
Important
Venezuela 42%
Informant's educa9onal level
Type of informant
Very Important
UnsaCsfied
Neutral
6% 11%
Higher than college/university degree
College/university degree
8%
7% 3%
83%
Mother Secondary school
Father Other
25.2%
Primary school
Grandparents
82%
3.8%
Ninguno
0.2%
Don't know
0.1%
Unmet needs, Caregiver impact, and Stigma
100% 80% 60% 40% 20% 0%
Child's au-sm has caused financial problems for family
Level of frustra-on in efforts to get services Brasil
100% 80% 60% 40% 20% 0%
9.95%
41.55%
29.18%
16.81%
ArgenCna
16.52%
48.71%
21.12%
Uruguay
18.13%
46.18%
23.51%
Venezuela
20.00%
República Dominicana
20.90%
Chile
21.37%
República Dominicana
11.78%
65.45%
9.09% 4.55%
41.79%
20.90%
47.33%
Never
Importance of child having support to make friends
someCmes
usually
always
53.77%
Uruguay
46.46%
52.76%
Brasil
8.02%
62.59%
45.55%
13.43%
21.37%
35.37%
Chile
11.05%
0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00% 100.00%
7%
47.4%
22%
27%
Important
23.3%
SaCsfied
51%
Something Important
República Dominicana Uruguay
The Caregiver Needs Survey was broadly disseminated via social networks in REAL countries during a period of 4 months (December 2015-April 2016) so that caregivers could complete it online, either assisted by a clinician or not. The survey solicited information about family demographics, affected individual characteristics, service encounters and parent/caregiver perceptions, including stigma. A total of 2965 surveys were completed. After data cleaning and data analysis, REAL researchers will draft a country and regional report.
Something Important
Chile
10%
Methods
SaCsfacCon that child has support to make progress in school
Brasil
5%
To provide a comprehensive picture of the major needs and challenges faced by families affected by ASD in REAL countries with the purpose of successfully enhancing awareness, improving services, and developing long-term policy solutions related to ASD.
Importance of child having support to make progress in school
50.65%
48.47%
Venezuela
53.04%
46.96%
ArgenCna
54.64%
UnsaCsfied
Neutral
42.78%
0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00% 100.00%
don´t
No don't know
SaCsfacCon that child has support to make friends
Very Important
Yes
SaCsfied
24%
18% 43%
75%
Family members have stopped working because of chid's au-sm
33%
100%
100%
80%
80%
60%
60%
Chile
40%
40%
República Dominicana
20%
20%
0%
0%
58.26% 62.60% 64.40% 64.73% 64.99% 70.07%
Brasil
Family members have cut down on works hours because of child's au-sm
40.87% 36.83% 35.34% 35.27% 34.62% 27.89%
0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00% 100.00%
Venezuela Uruguay ArgenCna República Dominicana Chile Brasil
44.35% 47.37% 49.61% 51.70% 53.77% 55.57%
54.78% 52.37% 50.00% 46.26% 45.89% 43.94%
0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00% 100.00% No
don't know
Yes No
Importance of family having a good relaConship with service providers Something Important
Important
SaCsfacCon with family´s relaConship with service providers
Very Important
UnsaCsfied
6% 14%
Neutral
SaCsfied
9% 25%
80%
66%
Other people would discriminate against me because I have a child with au-sm Brasil Uruguay República Dominicana
100% 80% 60% 40% 20% 0%
Chile 100%
ArgenCna
80%
Venezuela
60%
30.27%
5.86%
33.05%
9.60%
38.35%
4.51%
40.23%
6.90%
42.17%
6.67%
56.36%
1.82%
0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00% 100.00%
40% 20% 0%
N=2965
Quality of life
Service encounters and school enrollment
strongly disagree
disagree
agree
strongly agree
don't know
Yes
Challenges and priorities
Conclusions Ø Males were more prevalent than females in all countries. Ø ASD was the most common diagnosis for all the countries but Argentina. Ø Worrisome the fact that among the least mentioned professionals involved in diagnosis were pediatricians. Ø An average of 16 to 37 months difference was found between the age of parents first concerns and the age of diagnosis. Ø Language therapy is the most common treatment for individuals with ASD in all countries and it is also the treatment with most health insurance coverage. Ø Heterogeneity was highlighted in other treatments among countries with the highest representation of behavioral therapies in Venezuela and the Dominican Republic and psychoanalysis in Argentina. Ø More than 25% of interviewed families participated in parent organizations, with Argentina and Uruguay having the highest proportion, and Brazil and Venezuela the lowest. Ø Across countries, communication and social interaction difficulties were rated as the greatest challenges for caregivers, showing that the core symptoms of ASD were of primary concern to families in the study, as opposed to associated challenges such as eating and sleep difficulties. Ø While there is some variability in priorities across countries, each country considers improving educational services and health care services to be the most important priorities. Ø About half of the caregivers had sometimes experienced frustration to get services and reported that the condition of autism had impacted them financially and that they had to cut down work hours because of the child´s condition. Ø Although quality of life variables showed a high level of importance to caregivers in all countries, the level of satisfaction with these was low, especially regarding school support. The assessment of needs and challenges faced by families affected by ASD in different Latin American countries is essential for the identification of knowledge gaps, service needs, and stigma. Demographic variables showed a similar picture among countries. This study is important in the development of culturally relevant strategies for raising autism awareness, guiding the implementation of successful and improved ASD clinical and educational services and setting priorities for future national and regional research collaborative efforts. In this era of globalization, REAL is an attempt to generate a collaborative workforce in order to readily identify the best ways to approach issues related to ASD in Latin America.
