Profile of Service Use and Barriers to Access to Care among Brazilian Children and Adolescents with Autism Spectrum Disorders
Abstract
:1. Introduction
2. Material and Methods
2.1. Sample
2.2. Instrument
2.3. Ethical Procedures and Considerations
2.4. Statistical Analysis
3. Results
3.1. Use of Health Services
3.2. Health Professionals
3.3. School Profile
3.4. Insurance Type
3.5. Barriers to Accessing Services
3.6. Economic Impact on Families
3.7. Sociodemographic Factors, Use of Treatments, and Barriers to Accessing Services
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Family Features/ Region of Country | Brazil | North | Northeast | Midwest | Southeast | South | Difference between Regions of the Country |
---|---|---|---|---|---|---|---|
CHILD PROFILE | |||||||
Residential Region [N (%)] | 927 (100.0) | 42 (4.5) | 180 (19.4) | 60 (6.5) | 493 (53.2) | 152 (16.4) | - |
Age (years) mean (SD) * | 7.51 (4.13) | 7.60 (3.95) | 6.56 (3.63) | 7.60 (3.87) | 7.80 (4.32) | 7.55 (4.09) | p < 0.01 ** |
Gender [N (%)] | |||||||
Male | 770 (83.1) | 27 (64.3) | 151 (83.9) | 43 (71.7) | 407 (82.6) | 142 (93.4) | p < 0.01 |
Female | 157 (16.9) | 15 (35.7) | 29 (16.1) | 17 (28.3) | 86 (17.4) | 10 (6.6) | |
Levels of development [N (%)] | |||||||
Mild symptoms | 433 (47.0) | 13 (31.0) | 80 (44.7) | 28 (46.7) | 244 (49.9) | 68 (44.7) | p = 0.02 |
Moderate symptoms | 380 (41.2) | 16 (38.1) | 79 (44.1) | 27 (45.0) | 189 (38.7) | 69 (45.4) | |
Severe symptoms | 70 (7.6) | 8 (19.0) | 9 (5.0) | 4 (6.7) | 38 (7.8) | 11 (7.2) | |
Not known | 39 (4.2) | 5 (11.9) | 11 (6.1) | 1 (1.7) | 18 (3.7) | 4 (2.6) | |
Verbal level [N (%)] | |||||||
Does not speak | 184 (19.9) | 12 (28.6) | 41 (22.8) | 10 (16.7) | 92 (18.7) | 29 (19.2) | p = 0.75 |
Uses only single words | 128 (13.8) | 9 (21.4) | 26 (14.4) | 7 (11.7) | 66 (13.4) | 20 (13.2) | |
Uses 2- or 3-word phrases | 130 (14.1) | 7 (16.7) | 24 (13.3) | 8 (13.3) | 71 (14.4) | 20 (13.2) | |
Uses 4- or 5-word sentences | 186 (20.1) | 7 (16.7) | 39 (21.7) | 12 (20.0) | 95 (19.3) | 33 (21.9) | |
Uses complex sentences | 297 (32.1) | 7 (16.7) | 50 (27.8) | 23 (38.3) | 168 (34.1) | 49 (32.5) | |
Intelligence Levels [N (%)] | |||||||
Severe delay | 92 (10.0) | 11 (26.2) | 16 (8.9) | 7 (11.7) | 46 (9.4) | 12 (8.0) | p = 0.05 |
Mild delay | 310 (33.7) | 10 (23.8) | 67 (37.4) | 20 (33.3) | 155 (31.7) | 58 (38.7) | |
Average | 217 (23.6) | 14 (33.3) | 39 (21.8) | 15 (25.0) | 122 (24.9) | 27 (18.0) | |
Above average | 169 (18.4) | 3 (7.1) | 28 (15.6) | 12 (20.0) | 94 (19.2) | 32 (21.3) | |
Not known | 132 (14.3) | 4 (9.5) | 29 (16.2) | 6 (10.0) | 72 (14.7) | 21 (14.0) | |
Behavioral Problems [N (%)] | |||||||
Yes | 423 (45.6) | 19 (45.2) | 71 (39.4) | 29 (48.3) | 238 (48.3) | 66 (43.4) | p = 0.33 |
No | 504 (54.4) | 23 (54.8) | 109 (60.6) | 31 (51.7) | 255 (51.7) | 86 (56.6) | |
Distance traveled for diagnosis | |||||||
<25 km | 395 (43.6) | 16 (38.1) | 74 (42.5) | 27 (45.8) | 218 (45.1) | 60 (40.5) | p = 0.32 |
Between 25 and 50 km | 178 (19.6) | 6 (14.3) | 28 (16.1) | 8 (13.6) | 108 (22.4) | 28 (18.9) | |
Between 50 and 100 km | 109 (12.0) | 4 (9.5) | 21 (12.1) | 6 (10.2) | 60 (12.4) | 18 (12.2) | |
>100 km | 224 (24.8) | 16 (38.1) | 51 (29.3) | 18 (30.5) | 97 (20.1) | 42 (28.4) | |
INFORMANT PROFILE | |||||||
Relationship with the child # | |||||||
Mother/Stepmother | 762 (83.4) | 34 (82.9) | 147 (82.6) | 50 (84.7) | 409 (83.8) | 122 (83.0) | p = 0.60 |
Father | 68 (7.4) | 3 (7.3) | 15 (8.4) | 4 (6.8) | 34 (7.0) | 12 (8.2) | |
Grandparents | 31 (3.4) | - | 9 (5.1) | 1 (1.7) | 15 (3.1) | 6 (4.1) | |
Others | 52 (5.7) | 4 (9.7) | 7 (3.9) | 4 (6.8) | 30 (6.1) | 7 (4.8) | |
Level of education | |||||||
Completed primary education | 18 (1.9) | - | 2 (1,2) | 1 (1.7) | 9 (1.8) | 6 (4.0) | p = 0.78 |
High school | 244 (26.3) | 12 (28.6) | 48 (26.7) | 11 (18.3) | 141 (2.6) | 32 (21.2) | |
University Degree | 310 (33.5) | 14 (33.3) | 57 (31.7) | 20 (33.3) | 172 (34.5) | 47 (31.1) | |
Postgraduate/Specialization | 353 (38.1) | 16 (38.1) | 73 (40.6) | 28 (46.7) | 170 (34.5) | 66 (43.7) | |
Not known | 1 (0.1) | - | - | - | - | - |
Use of Services/Region of Country | Brazil N (%) | North N (%) | Northeast N (%) | Midwest N (%) | Southeast N (%) | South N (%) | Difference between Regions of the Country |
---|---|---|---|---|---|---|---|
Current Health Service | |||||||
Behavioral | 300 (32.4) | 6 (15.4) | 54 (30.3) | 25 (42.4) | 164 (34.2) | 51 (34.7) | p = 0.07 |
Pharmacotherapy | 258 (28.1) | 9 (22.0) | 38 (21.1) | 17 (28.3) | 145 (29.8) | 49 (32.5) | p = 0.13 |
Sensory Integration Therapy | 159 (17.3) | 5 (11.9) | 38 (21.1) | 12 (20.3) | 77 (15.8) | 27 (18.0) | p = 0.50 |
Social Skills Training | 154 (16.8) | 6 (14.6) | 23 (12.8) | 8 (13.6) | 91 (18.7) | 26 (17.2) | p = 0.39 |
Psychoanalysis | 103 (11.2) | 1 (2.4) | 19 (10.6) | 5 (8.5) | 65 (13.3) | 13 (8.6) | p = 0.13 |
Biomedical Treatment * | 5 (8.2) | 2 (4.9) | 13 (7.2) | 3 (5.1) | 40 (8.2) | 17 (11.3) | p = 0.48 |
Relational approach ** | 4 (3.7) | 2 (4.9) | 1 (0.6) | 1 (1.7) | 22 (4.5) | 8 (5.3) | p = 0.10 |
None | 192 (20.7) | 9 (21.4) | 49 (27.2) | 16 (26.7) | 91 (18.5) | 27 (17.8) | p = 0.05 |
Lifetime Health Service | |||||||
Behavioral | 394 (42.5) | 14 (35.0) | 71 (40.6) | 33 (57.9) | 214 (44.4) | 62 (43.1) | p = 0.15 |
Pharmacotherapy | 346 (37.6) | 8 (20.0) | 55 (30.6) | 24 (40.0) | 198 (40.3) | 61 (40.9) | p = 0.02 |
Social Skills Training | 231 (25.1) | 8 (19.5) | 36 (20.1) | 21 (35.6) | 129 (26.3) | 37 (24.7) | p = 0.27 |
Sensory Integration Therapy | 226 (24.5) | 9 (22.0) | 53 (29.4) | 17 (28.8) | 113 (23.0) | 34 (22.7) | p = 0.63 |
Psychoanalysis | 151 (16.5) | 2 (5.0) | 23 (12.8) | 13 (22.0) | 91 (18.6) | 22 (14.8) | p = 0.19 |
Biomedical Treatment * | 112 (12.2) | 2 (4.9) | 21 (11.7) | 8 (13.6) | 59 (12.0) | 22 (36.7) | p = 0.11 |
Relational approach ** | 61 (6.7) | 5 (12.5) | 9 (5.0) | 1 (1.7) | 33 (6.8) | 13 (8.7) | p = 0.02 |
None | 201 (21.8) | 7 (17.1) | 41 (22.8) | 15 (25.4) | 103 (20.9) | 35 (23.0) | p = 0.084 |
Current Health Professionals | |||||||
Neurologists/Neuropediatrician | 527 (56.7) | 17 (40.5) | 93 (52.0) | 35 (58.3) | 294 (59.9) | 87 (57.6) | p = 0.08 |
Nutritionist | 427 (46.4) | 17 (41.5) | 85 (47.2) | 30 (50.0) | 239 (49.0) | 56 (37.1) | p = 0.12 |
Speech therapist | 384 (41.8) | 17 (41.5) | 75 (41.9) | 24 (40.0) | 213 (43.6) | 55 (36.7) | p = 0.66 |
Psychiatrist | 282 (30.9) | 8 (19.5) | 62 (35.0) | 16 (27.1) | 154 (31.8) | 42 (28.0) | p = 0.28 |
Behavioral therapist | 256 (27.8) | 7 (17.1) | 31 (17.4) | 20 (33.3) | 142 (29.0) | 56 (37.1) | p < 0.01 |
Psychologist | - | - | - | - | - | - | - |
Occupational therapist | - | - | - | - | - | - | - |
Paediatrician | - | - | - | - | - | - | - |
Lifetime Health Professionals | |||||||
Speech therapist | 631 (69.1) | 24 (57.1) | 110 (61.5) | 46 (76.7) | 354 (71.8) | 97 (63.8) | p = 0.14 |
Neurologists/Neuropediatrician | 598 (64.6) | 28 (66.7) | 106 (58.9) | 45 (75.0) | 324 (65.9) | 95 (62.5) | p = 0.19 |
Psychologist | 584 (63.1) | 21 (51.2) | 112 (62.2) | 42 (70.0) | 326 (66.1) | 83 (55.0) | p = 0.04 |
Pediatrician | 545 (59.1) | 24 (58.5) | 94 (52.5) | 42 (70.0) | 302 (61.5) | 83 (55.0) | p = 0.08 |
Occupational therapist | 415 (45.2) | 13 (31.0) | 87 (48.6) | 29 (48.3) | 229 (47.0) | 57 (37.7) | p = 0.07 |
Psychiatrist | 327 (35.5) | 9 (22.0) | 39 (21.8) | 27 (45.0) | 222 (45.3) | 30 (19.9) | p < 0.01 |
Behavioral therapist | 277 (30.0) | 10 (23.8) | 40 (22.3) | 28 (46.7) | 158 (32.2) | 41 (27.2) | p < 0.01 |
Nutritionist | 161 (17.7) | 10 (25.6) | 34 (19.1) | 9 (15.0) | 76 (15.7) | 32 (21.2) | p = 0.31 |
Current/Educational Service | |||||||
School Type | |||||||
Mainstream | 715 (85.6) | 26 (72.2) | 149 (93.7) | 51 (92.7) | 376 (83.4) | 113 (84.3) | p < 0.01 |
Special | 79 (9.5) | 3 (8.3) | 4 (2.5) | 4 (7.3) | 53 (11.8) | 15 (11.2) | |
Does not attend | 38 (4.6) | 7 (19.4) | 6 (3.8) | - | 20 (4.4) | 5 (3.7) | |
School Category | |||||||
Private school | 458 (54.7) | 15 (41.7) | 114 (71.7) | 24 (43.6) | 246 (54.3) | 59 (44.0) | p < 0.01 |
Public school | 331 (39.5) | 15 (41.7) | 38 (23.9) | 31 (56.4) | 179 (39.5) | 68 (50.7) | |
Other type of school | 13 (1.6) | - | 2 (1.3) | - | 10 (2.2) | 1 (0.7) | |
Does not attend school | 35 (4.2) | 6 (16.7) | 5 (3.1) | - | 18 (4.0) | 6 (4.5) | |
Additional Educational Support | |||||||
Yes | 428 (61.1) | 13 (50.0) | 73 (56.6) | 38 (79.2) | 218 (57.1) | 86 (74.1) | p < 0.01 |
No/Not known | 273 (38.9) | 13 (50.0) | 56 (31.1) | 10 (20.8) | 164 (42.9) | 30 (25.9) | |
Special Needs Teacher | |||||||
Yes | 70 (7.7) | 4 (10.0) | 20 (11.2) | 3 (5.1) | 31 (6.4) | 12 (8.0) | p = 0.27 |
Not | 841 (92.3) | 36 (90.0) | 158 (88.8) | 56 (94.9) | 453 (93.6) | 138 (92.0) | |
Lifetime/educational service | |||||||
Special Needs Teacher | |||||||
Yes | 310 (33.7) | 12 (30.0) | 41 (23.0) | 25 (41.1) | 171 (34.9) | 61 (40.1) | p < 0.01 |
No | 610 (66.3) | 28 (70.0) | 137 (77.0) | 35 (58.3) | 319 (65.1) | 91 (59.9) |
Health System Type | Brazil | North | Northeast | Midwest | Southeast | South | Difference Test between Regions of the Country |
---|---|---|---|---|---|---|---|
Exclusively health insurance | 514 (55.9) | 20 (47.6) | 95 (53.4) | 39 (66.1) | 274 (55.8) | 86 (57.7) | p = 0.63 |
Exclusively public | 240 (26.1) | 15 (35.7) | 49 (27.5) | 10 (16.9) | 132 (26.9) | 34 (22.8) | |
Public/health insurance or private | 106 (11.5) | 4 (9.5) | 21 (11.8) | 4 (6.8) | 57 (11.6) | 20 (13.4) | |
Exclusively private | 59 (6.4) | 3 (7.1) | 13 (7.3) | 6 (10.2) | 28 (5.7) | 9 (6.0) | |
Barriers/Region of the country | |||||||
There was a waiting list | |||||||
Yes | 384 (59.6) | 23 (85.2) | 80 (66.7) | 23 (53.5) | 216 (59.8) | 42 (45.2) | p < 0.01 |
Not | 204 (31.7) | 2 (7.4) | 33 (27.5) | 18 (41.9) | 106 (29.4) | 45 (48.4) | |
Not known | 56 (2.8) | 2 (7.4) | 7 (5.8) | 2 (4.7) | 39 (10.8) | 6 (6.5) | |
The price/cost of service/treatment | |||||||
Yes | 357 (38.7) | 17 (42.5) | 68 (38.0) | 30 (50.8) | 188 (38.1) | 54 (35.5) | p = 0.23 |
Not | 552 (59.8) | 23 (57.5) | 110 (61.5) | 29 (49.2) | 293 (59.4) | 97 (63.8) | |
Not known | 14 (1.5) | - | 1 (0.6) | - | 12 (2.4) | 1 (0.7) | |
There was no service or treatment | |||||||
Yes | 282 (30.7) | 14 (34.1) | 56 (31.3) | 20 (33.9) | 148 (30.3) | 44 (28.9) | p = 0.30 |
Not | 612 (66.5) | 26 (63.4) | 121 (67.6) | 39 (66.1) | 320 (65.4) | 106 (69.7) | |
Not known | 26 (2.8) | 1 (2.4) | 2 (1.1) | - | 21 (4.3) | 2 (1.3) | |
Not entitled to these services | |||||||
Yes | 197 (21.4) | 10 (25.0) | 36 (20.1) | 13 (22.0) | 114 (23.2) | 24 (15.8) | p = 0.74 |
Not | 689 (75.7) | 29 (72.5) | 139 (77.7) | 45 (76.3) | 362 (73.6) | 123 (80.9) | |
Not known | 27 (2.9) | 1 (2.5) | 4 (2.2) | 1 (1.7) | 16 (3.3) | 5 (3.3) | |
Could not get the information | |||||||
Yes | 192 (20.9) | 8 (20.5) | 40 (22.3) | 16 (27.1) | 108 (22.0) | 20 (13.2) | p = 0.06 |
Not | 714 (77.7) | 31 (79.5) | 139 (77.7) | 41 (69.5) | 372 (75.9) | 131 (86.2) | |
Not known | 13 (1.4) | - | - | 2 (3.4) | 10 (2.0) | 1 (0.7) | |
Other reason | |||||||
Yes | 86 (9.5) | 5 (12.8) | 17 (9.5) | 7 (12.1) | 44 (9.1) | 13 (8.6) | p = 0.54 |
Not | 795 (87.5) | 34 (87.2) | 155 (86.6) | 48 (82.8) | 421 (87.3) | 137 (90.7) | |
Not known | 28 (3.1) | - | 7 (3.9) | 3 (5.2) | 17 (3.5) | 1 (0.7) | |
Frustration in seeking treatment | |||||||
How often did you feel frustrated when seeking services/treatments? | |||||||
Never | 68 (8.7) | - | 12 (8.6) | 4 (7.7) | 36 (8.4) | 16 (12.8) | p = 0.22 |
Sometimes | 336 (43.1) | 13 (39.4) | 65 (46.8) | 20 (38.5) | 182 (42.3) | 56 (44.8) | |
Often | 239 (30.7) | 10 (30.3) | 38 (27.3) | 21 (40.4) | 141 (32.8) | 29 (23.2) | |
Always | 122 (15.7) | 10 (30.3) | 23 (16.5) | 7 (13.5) | 61 (14.2) | 21 (16.8) | |
Do not know | 1 4 (1.8) | - | - | - | 10 (2.3) | 3 (2.4) | |
Impact on the family | |||||||
Your child caused a financial problem for the family. | |||||||
Yes | 451 (48.7) | 21 (50.0) | 80 (44.7) | 33 (55.0) | 247 (50.1) | 70 (46.1) | p = 0.57 |
Not | 466 (50.3) | 20 (47.6) | 98 (54.7) | 26 (43.3) | 243 (49.3) | 79 (52.0) | |
Not known | 9 (1.0) | 1 (2.4) | 1 (0.6) | 1 (1.7) | 3 (0.6) | 3 (2.0) | |
A family member reduced working hours | |||||||
Yes | 404(43.6) | 20 (47.6) | 71 (39.7) | 26 (43.3) | 214 (43.4) | 73 (48.0) | p = 0.58 |
Not | 516 (55.7) | 21 (50.0) | 107 (59.8) | 33 (55.0) | 276 (56.0) | 79 (52.0) | |
Not known | 6 (0.6) | 1 (2.4) | 1 (0.6) | 1 (1.7) | 3 (0.6) | - | |
A family member stopped working | |||||||
Yes | 339 (36.6) | 16(38.1) | 57 (31.8) | 15 (25.0) | 198 (40.2) | 53(34.9) | p = 0.01 |
Not | 580 (62.6) | 24 (57.1) | 120 (67.0) | 45 (75.0) | 292 (59.2) | 99 (65.1) | |
Not known | 6 (0.6) | 2 (4.8) | 2 (1.1) | - | 3 (0.6) | - |
Initial Logistic Multivariable Regression | Final Multivariable Logistic Regression | |||||
---|---|---|---|---|---|---|
(Independent Variables) | OR * | (95% CI) ** | p | Adjusted OR | (95% CI) | p |
Type of Health Services at present | ||||||
Intervention/behavioral modification | ||||||
Age range (<6 years as reference) | 0.96 | (0.71–1.27) | 0.76 | - | - | - |
Location (countryside as reference) | 0.81 | (0.61–1.10) | 1.66 | - | - | - |
Health system (exclusively public as reference) | 0.52 | (0.36–0.75) | <0.01 | 0.52 | (0.36–0.75) | <0.01 |
Informant Education (< education as reference) | 0.57 | (0.40–0.81) | <0.01 | 0.55 | (0.38–0.78) | <0.01 |
Pharmacotherapy | ||||||
Age range (<6 years as reference) | 0.57 | (0.42–0.76) | <0.01 | 0.58 | (0.43–0.77) | <0.01 |
Location (urban as reference) | 1.18 | (0.87–1.60) | 0.39 | - | - | - |
Health system (exclusively public as reference) | 0.76 | (0.53–1.09) | 0.14 | - | - | - |
Informant Education (<education as reference) | 1.04 | (0.74–1.47) | 0.81 | - | - | - |
Barriers to treatment | ||||||
Waiting list | ||||||
Age range (<6 years as reference) | 1.72 | (1.21–2.46) | <0.01 | 1.72 | (1.21–2.46) | <0.01 |
Location (countryside as reference) | 0.68 | (0.47–0.99) | 0.04 | 0.68 | (0.47–0.99) | 0.04 |
Health system (exclusively public as reference) | 1.75 | (1.11–2.74) | <0.02 | 1.75 | (1.11–2.74) | <0.02 |
Informant Education (< education as reference) | 2.23 | (1.40–3.56) | <0.01 | 2.23 | (1.40–3.56) | <0.01 |
Costs | ||||||
Age range (<6 years as reference) | 0.98 | (0.75–1.29) | 0.89 | - | - | - |
Location (countryside as reference) | 0.86 | (0.65–1.13) | 0.27 | - | - | - |
Health system (Exclusively public as reference) | 0.80 | (0.58–1.11) | 0.19 | 0.76 | (0.56–1.04) | 0.08 |
Informant Education (<education as reference) | 0.90 | 0.65–1.24) | 0.51 | - | - | - |
Lack of specialist service | ||||||
Age range (<6 years as reference) | 0.88 | (0.66–1.17) | 0.38 | - | - | - |
Location (countryside as reference) | 1.72 | (1.27–2.33) | <0.01 | 1.71 | (1.26–2.32) | <0.01 |
Health system (exclusively public as reference) | 1.07 | (0.76–1.50) | 0.72 | - | - | - |
Informant Education (<education as reference) | 0.69 | (0.49–0.98) | 0.04 | 0.71 | (0.51–0.98) | 0.04 |
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Araripe, B.; Montiel-Nava, C.; Bordini, D.; Cunha, G.R.; Garrido, G.; Cukier, S.; Garcia, R.; Rosoli, A.; Valdez, D.; Caetano, S.C.; et al. Profile of Service Use and Barriers to Access to Care among Brazilian Children and Adolescents with Autism Spectrum Disorders. Brain Sci. 2022, 12, 1421. https://doi.org/10.3390/brainsci12101421
Araripe B, Montiel-Nava C, Bordini D, Cunha GR, Garrido G, Cukier S, Garcia R, Rosoli A, Valdez D, Caetano SC, et al. Profile of Service Use and Barriers to Access to Care among Brazilian Children and Adolescents with Autism Spectrum Disorders. Brain Sciences. 2022; 12(10):1421. https://doi.org/10.3390/brainsci12101421
Chicago/Turabian StyleAraripe, Beatriz, Cecilia Montiel-Nava, Daniela Bordini, Graccielle R. Cunha, Gabriela Garrido, Sebastián Cukier, Ricardo Garcia, Analia Rosoli, Daniel Valdez, Sheila C. Caetano, and et al. 2022. "Profile of Service Use and Barriers to Access to Care among Brazilian Children and Adolescents with Autism Spectrum Disorders" Brain Sciences 12, no. 10: 1421. https://doi.org/10.3390/brainsci12101421
APA StyleAraripe, B., Montiel-Nava, C., Bordini, D., Cunha, G. R., Garrido, G., Cukier, S., Garcia, R., Rosoli, A., Valdez, D., Caetano, S. C., Rattazzi, A., & Paula, C. S. (2022). Profile of Service Use and Barriers to Access to Care among Brazilian Children and Adolescents with Autism Spectrum Disorders. Brain Sciences, 12(10), 1421. https://doi.org/10.3390/brainsci12101421