Background
Methods
Study design
Ethics
Reporting
Participants
Survey
Development and testing of the survey
Data analysis
Data availability
Results
Participants’ characteristics
Variable | Croatia | North Macedonia | Serbia | Total | p |
---|---|---|---|---|---|
Highest level of education, N (%) | |||||
- Primary school - Secondary school - University degree - MSc/PhD | 45 (8.29) 372 (68.69) 114 (20.99) 11 (2.03) | 10 (4.88) 74 (36.10) 93 (45.37) 28 (13.66) | 8 (3.88) 89 (43.20) 92 (44.66) 17 (8.25) | 63 (6.60) 535 (56.18) 299 (31.34) 56 (5.88) | 0.499 < 0.001 < 0.001 < 0.001 |
Age, median (IQR) | 38 (10) | 41 (9) | 38 (8) | 38 (9) | < 0.001*1 |
Spouse’s/partner’s highest level of education, N (%) | |||||
- Primary school - Secondary school - University degree - MSc/PhD | 45 (9.05) 376 (75.65) 62 (12.68) 13 (2.62) | 10 (5.15) 99 (51.03) 72 (37.11) 13 (6.70) | 9 (4.71) 97 (50.79) 71 (37.17) 14 (7.33) | 64 (7.26) 572 (64.85) 205 (23.36) 40 (4.53) | 0.78 < 0.001 < 0.001 < 0.001 |
Age of spouse/partner, median (IQR) | 40 (9.5) | 43 (10) | 40 (10) | 41 (10) | < 0.001*2 |
Number of children, median (IQR) | 2 (1) | 2 (0) | 2 (1) | 2 (1) | NS |
Number of children with developmental disabilities, median (IQR) | 1 (0) | 1 (0) | 1 (0) | 1 (0) | NS |
Child characteristics
Variable | N (%) | p | |||
---|---|---|---|---|---|
Croatia | North Macedonia | Serbia | Total | ||
Child’s gender, N (%) | |||||
Male Female | 262 (67.26) 128 (32.74) | 121 (70.76) 50 (29.24) | 124 (72.94) 46 (27.06) | 507 (69.40) 224 (30.60) | 0.97 0.88 |
Child’s current age, median (IQR) | 8 (7) | 9 (8) | 5 (4) | 7 (8) | < 0.001*1 |
How old was your child when you first had a concern about the child’s development, median (IQR) | 1 (2) | 2 (2) | 1.5 (1) | 2 (2) | NS |
First concerns that the participants had about their children (multiple answer were allowed): | |||||
Had medical problems such as seizures, lack of physical growth, or stomach problems Didn’t make eye contact when talking or playing with others Didn’t respond when called or didn’t respond to sounds Didn’t seem to understand nonverbal communication, such as understanding what you meant by the tone of voice you used or your facial expressions or other body language cues Had behavioral difficulties such as sleeping or eating problems, high activity level, wandering, tantrums, aggressive or destructive behavior Had problems with coordination or gross motor skills, such as walking Talked later than usual for most children Was not talking at all Did not talk as well as other children that were the same age Some speech skills that he/she had already developed were lost Didn’t seem to understand what you or other adults said to him/her Had problems with fine motor skills, such as using scissors or drawing with crayons Had difficulty playing or interacting with others Had difficulty learning new skills such as toilet training or getting dressed Had difficulty learning new things, such as the alphabet or numbers Other | 78 (19.95) 130 (33.25) 106 (27.11) 104 (26.60) 132 (33.76) 127 (32.48) 127 (32.48) 105 (26.85) 99 (25.32) 84 (21.48) 118 (30.18) 176 (45.01) 161 (41.18) 123 (31.46) 102 (26.09) 81 (20.72) | 29 (16.96) 56 (32.75) 75 (43.86) 60 (35.09) 51 (29.82) 59 (34.50) 34 (19.88) 71 (41.52) 46 (26.90) 45 (26.32) 56 (32.75) 73 (42.69) 70 (40.94) 53 (30.99) 41 (23.98) 42 (24.56) | 22 (12.94) 90 (52.94) 79 (46.47) 62 (36.47) 45 (26.47) 37 (21.76) 36 (21.18) 60 (35.29) 54 (31.76) 48 (28.24) 82 (48.24) 61 (35.88) 69 (40.59) 57 (33.53) 23 (13.53) 37 (21.76) | 129 (17.62) 276 (37.70) 260 (35.52) 226 (30.47) 228 (31.14) 223 (30.47) 197 (26.91) 236 (32.24) 199 (27.19) 177 (24.18) 256 (34.97) 310 (42.35) 300 (40.99) 233 (31.83) 166 (22.68) 160 (21.86) | < 0.001 < 0.001 < 0.001 < 0.001 0.723 < 0.001 < 0.001 < 0.001 0.475 0.018 < 0.001 < 0.001 0.701 0.319 0.026 0.171 |
The age of the child when they were first diagnosed with a developmental disability, median (IQR) | 3 (3) | 3 (2) | 2 (2) | 2 (3) | NS |
Who determined the child’s initial diagnosis | |||||
- Primary care physician/Family physician - Pediatrician - Pediatric specialist (i.e. developmental pediatrician) - Psychologist - Psychiatrist - Neurologist - Nurse - Team of professionals - Other | 2 (0.51) 29 (7.42) 115 (29.41) 28 (7.16) 20 (5.12) 19 (4.86) 0 (0.00) 124 (31.71) 54 (13.81) | 6 (3.51) 7 (4.09) 17 (9.94) 3 (1.75) 10 (5.85) 56 (32.75) 0 (0.00) 54 (31.58) 18 (10.53) | 2 (1.18) 3 (1.76) 9 (5.29) 17 (10.00) 62 (36.47) 19 (11.18) 0 (0.00) 39 (22.94) 19 (11.18) | 10 (1.37) 39 (3.98) 141 (19.27) 48 (6.56) 92 (12.57) 94 (12.90) 0 (0.00) 217 (29.64) 91 (12.43) | 0.009 0.048 < 0.001 0.006 < 0.001 < 0.001 - < 0.001 0.872 |
Service encounters
Questions | N (%) | p* | |||
---|---|---|---|---|---|
Croatia | North Macedonia | Serbia | Total | ||
What kind of school is your child currently enrolled in? | |||||
- Preschool - Public school - Private school - Special school for children with disabilities - Not enrolled in preschool/school | 97 (27.64) 120 (34.19) 1 (0.28) 63 (17.95) 70 (19.94) | 34 (20.48) 62 (37.35) 3 (1.81) 33 (19.88) 34 (20.48) | 70 (42.17) 16 (9.64) 1 (0.60) 34 (20.48) 45 (27.11) | 201 (29.43) 198 (28.99) 5 (0.73) 130 (19.03) 149 (21.82) | < 0.001 < 0.001 < 0.001 < 0.001 0.010 |
Does your child receive any additional academic support because of his/her developmental needs? | |||||
- Yes - No | 205 (58.40) 146 (41.60) | 96 (57.83) 70 (42.17) | 90 (54.22) 76 (45.78) | 391 (57.25) 292 (42.75) | 0.056 0.060 |
Does your child currently receive any special assistance from the government/city/municipality etc., because of his/her developmental disability? | |||||
- Yes - No | 225 (64.10) 126 (35.90) | 109 (65.66) 57 (34.34) | 115 (69.28) 51 (30.72) | 449 (65.74) 234 (34.26) | 0.061 0.055 |
Please indicate what special assistance you receive (multiple answers were allowed): | |||||
- Help from the state - Help from the city - Help from the county - Help from a religious organization - Some other help | 170 (76.23) 57 (25.56) 12 (5.38) 0 (0.00) 29 (13.00) | 95 (88.79) 3 (2.80) 9 (8.41) 1 (0.93) 16 (14.95) | 90 (78.26) 8 (6.96) 8 (6.96) 0 (0.00) 23 (20.00) | 355 (79.78) 68 (15.28) 146 (32.80) 1 (0.22) 68 (15.28) | < 0.001 < 0.001 0.068 - 0.020 |
Do you or any family member currently participate in any family support, advocacy group or organization because of the child’s developmental disability? | |||||
- Yes - No | 109 (31.41) 238 (68.59) | 30 (18.40) 133 (81.60) | 45 (27.11) 121 (72.89) | 184 (27.22) 492 (72.78) | 0.138 < 0.001 |
To what source(s) do you typically turn to get information about your child’s condition (multiple answer were allowed)? | |||||
- The Internet - My child’s primary care physician/pediatrician - My child’s teacher - Other parents of children with developmental disabilities - Experts (i.e. health specialists, therapists) who work with my child) - Other | 190 (54.76) 169 (48.70) 121 (34.87) 178 (51.30) 245 (70.61) 9 (2.59) | 87 (53.37) 78 (47.85) 36 (22.09) 78 (47.85) 95 (58.28) 13 (7.98) | 80 (48.19) 72 (43.37) 38 (22.89) 77 (46.39) 133 (80.12) 14 (8.43) | 357 (52.81) 319 (47.19) 195 (28.85) 333 (49.26) 473 (67.97) 36 (5.32) | 0.562 0.181 < 0.001 0.205 < 0.001 < 0.001 |
Parent/caregiver perceptions
Questions | N (%) | p* | |||
---|---|---|---|---|---|
Croatia | North Macedonia | Serbia | Total | ||
During the past 12 months, did you have any difficulties or delays in getting services for your child because the child was not eligible for the services? | |||||
- Yes - No | 148 (44.05) 188 (55.95) | 75 (46.58) 86 (53.42) | 61 (36.97) 104 (63.03) | 284 (42.90) 378 (57.10) | 0.467 0.562 |
During the past 12 months, did you have any difficulties or delays because services the child needed were not available in your area? | |||||
- Yes - No | 167 (49.70) 169 (50.30) | 80 (49.69) 81 (50.31) | 95 (57.58) 70 (42.42) | 342 (51.66) 320 (48.34) | 0.187 0.462 |
During the past 12 months, did you have any difficulties or delays because there were waiting lists, backlogs, or other problems getting appointments? | |||||
- Yes - No | 209 (62.20) 127 (37.80) | 93 (57.76) 68 (42.24) | 95 (57.58) 70 (42.42) | 397 (59.97) 265 (40.03) | 0.677 0.267 |
During the past 12 months, did you have any difficulties or delays because you couldn’t pay for it? | |||||
- Yes - No | 126 (37.50) 210 (62.50) | 56 (34.78) 105 (65.22) | 69 (41.82) 96 (58.18) | 251 (37.92) 411 (62.08) | 0.827 0.004 |
During the past 12 months, did you have any difficulties or delays because you had trouble getting the information you needed? | |||||
- Yes - No | 152 (45.24) 184 (54.76) | 75 (46.58) 86 (53.42) | 80 (48.48) 85 (51.52) | 307 (46.37) 355 (53.63) | 0.029 0.117 |
During the past 12 months, did you have any difficulties or delays for any other reason? | |||||
- Yes - No | 78 (23.21) 258 (76.79) | 54 (33.54) 107 (66.46) | 57 (34.55) 108 (65.45) | 189 (28.55) 473 (71.45) | < 0.001 < 0.001 |
Please, could you describe those other reasons? | |||||
During the past 12 months, how often have you been frustrated in your efforts to get services for your child? | |||||
- Never - Sometimes - Usually - Always | 39 (12.00) 164 (50.46) 58 (17.85) 64 (19.69) | 78 (49.06) 46 (28.93) 0 (0) 35 (22.01) | 24 (15.00) 70 (43.75) 33 (20.63) 33 (20.63) | 141 (21.89) 280(43.48) 91 (14.13) 132 (20.50) | < 0.001 < 0.001 0.105 |
Has your child’s condition caused financial problems for your family? | |||||
- Yes - No | 126 (50.81) 122 (49.19) | 95 (76.00) 30 (24.00) | 91 (66.42) 46 (35.58) | 312 (61.18) 198 (38.82) | < 0.001 < 0.001 |
Have you or other family members stopped working because of your child’s condition? | |||||
- Yes - No | 148 (59.58) 100 (40.32) | 58 (46.40) 67 (53.60) | 76 (55.47) 61 (44.53) | 282 (55.30) 228 (44.70) | < 0.001 < 0.001 |
Have you or other family members cut down on the hours your work because of your child’s condition? | |||||
- Yes - No | 117 (47.18) 131 (52.82) | 68 (54.40) 57 (45.60) | 69 (50.36) 68 (49.64) | 254 (49.80) 256 (50.20) | < 0.001 < 0.001 |
What you consider to be the greatest challenges in caring for a child with developmental disability (three answer were allowed): | |||||
- Challenging behaviors (i.e. self-injury, aggression, tantrums) - Daily living skills (i.e. toileting, self-feeding, self-care) - Health problems (i.e. co-occurring physical and/or mental health conditions) - Sleep problems (i.e. trouble falling asleep, trouble staying asleep) - Diet/eating/feeding difficulties - Social interaction difficulties - Repetitive behaviors/restrictive interests - Communication difficulties - Safety concerns (i.e. wandering, climbing) - Sensory issues (sensitivity on sounds, food textures, touch etc.) - Other | 69 (27.82) 117 (47.18) 90 (36.29) 41 (16.53) 74 (29.84) 135 (54.44) 66 (26.61) 143 (57.66) 49 (19.76) 80 (32.26) 16 (6.45) | 40 (32.00) 79 (63.20) 49 (39.20) 23 (18.40) 26 (20.80) 74 (59.20) 29 (23.20) 77 (61.60) 21 (16.80) 30 (24.00) 21 (16.80) | 41 (29.93) 68 (49.64) 44 (32.12) 31 (22.63) 31 (22.63) 76 (55.47) 22 (16.06) 88 (64.23) 18 (13.14) 27 (19.71) 26 (18.98) | 150 (29.41) 264 (51.76) 183 (35.88) 95 (18.62) 131 (25.68) 285 (55.88) 117 (22.94) 308 (60.39) 88 (17.25) 137 (26.86) 63 (12.35) | 0.013 < 0.001 0.525 < 0.001 0.781 0.681 0.560 0.577 0.671 < 0.001 < 0.001 |
The greatest challenges you face in getting support for your child (three answer were allowed)? | |||||
- Making sure my child receives adequate health care - Making sure my child receives adequate education - Making sure my child receives adequate welfare / social supports - Making sure my child’s basic rights are protected - Making sure my family and I receive adequate respite - Other | 173 (69.76) 165 (66.53) 152 (61.29) 198 (79.84) 104 (41.94) 11 (4.44) | 98 (78.40) 89 (71.20) 83 (66.40) 89 (71.20) 40 (32.00) 20 (16.00) | 92 (67.15) 92 (67.15) 90 (65.69) 91 (66.42) 67 (48.91) 14 (10.22) | 363 (71.18) 346 (67.84) 325 (63.72) 378 (74.11) 211 (41.37 45 (8.82) | < 0.001 < 0.001 < 0.001 < 0.001 < 0.001 < 0.001 |
What you consider to be the greatest priorities for affected families in your country (three answer were allowed)? | |||||
- Improved health care services - Improved education services - Improved welfare / social services - Greater rights for individuals with developmental disabilities - Greater protection of existing rights for individuals with developmental disabilities - More information about people with developmental disabilities - Greater in-home support - Greater community awareness - Greater opportunities for parent interactions / networking - Providing assistance to healthy children in the family to better cope with problems related to the children with developmental disabilities - Provision of psychological help for parents - A greater number of Institutions/Centers for working with children with developmental disabilities - More professional staff in existing institutions in the place where the child lives - Availability of associations for parents of children with developmental disabilities in the place where the child lives - Better education of existing experts to notice symptoms of developmental delays - Better education for parents of newly diagnosed children with developmental disabilities in order to teach them how to work with their children - Other | 142 (57.26) 114 (45.97) 101 (40.73) 180 (72.58) 95 (38.31) 78 (31.45) 47 (18.95) 98 (39.52) 40 (16.13) 66 (26.61) 76 (30.65) 100 (40.32) 92 (37.10) 48 (19.35) 78 (31.45) 84 (33.87) 8 (3.23) | 70 (56.00) 59 (47.20) 54 (43.20) 63 (50.40) 43 (34.40) 37 (29.60) 28 (22.40) 53 (42.40) 17 (13.60) 23 (18.40) 37 (29.60) 71 (56.80) 57 (45.60) 31 (24.80) 39 (31.20) 43 (34.40) 13 (10.40) | 68 (49.64) 49 (35.77) 46 (33.58) 62 (45.26) 33 (24.09) 38 (27.74) 31 (22.63) 51 (37.23) 17 (12.41) 25 (18.25) 45 (32.85) 71 (51.82) 63 (45.99) 19 (13.87) 38 (27.74) 38 (27.74) 15 (10.95) | 280 (54.90) 222 (43.53) 201 (39.41) 305 (59.80) 171 (33.53) 153 (30.00) 106 (20.78) 202 (39.60) 74 (14.50) 114 (22.35) 158 (30.98) 242 (47.45) 212 (41.57) 98 (19.215) 120 (23.52) 165 (32.35) 36 (7.06) | 0.451 0.571 0.011 0.650 0.363 0.568 0.671 0.560 0.456 0.933 0.456 < 0.001 < 0.001 < 0.001 0.657 0.195 < 0.001 |
Statement | N (%) | ||||
---|---|---|---|---|---|
Strongly disagree | Disagree | Neither agree nor disagree | Agree | Strongly agree | |
I feel helpless for having a child with a developmental disability | |||||
Croatia North Macedonia Serbia Total | 44 (17.74) 20 (16.00) 21 (15.33) 85 (16.66) | 49 (19.76) 19 (15.20) 34 (24.82) 102 (20.00) | 77 (31.05) 42 (33.60) 48 (35.04) 167 (32.75) | 58 (23.39) 40 (32.00) 25 (18.25) 123 (24.11) | 20 (8.06) 4 (3.20) 9 (6.57) 33 (6.47) |
I worry if other people would know I have a child with a developmental disability | |||||
Croatia North Macedonia Serbia Total | 115 (46.37) 55 (44.00) 64 (46.72) 234 (45.88) | 86 (34.68) 27 (21.60) 44 (32.12) 157 (30.78) | 24 (9.68) 19 (15.20) 19 (13.87) 62 (12.15) | 19 (7.66) 11 (8.80) 9 (6.57) 39 (7.64) | 4 (1.61) 13 (10.40) 1 (0.73) 18 (3.52) |
Other people would discriminate against me because I have a child with a developmental disability | |||||
Croatia North Macedonia Serbia Total | 74 (29.84) 35 (28.00) 36 (26.28) 146 (28.62) | 69 (27.82) 20 (16.00) 39 (28.47) 128 (25.10) | 68 (27.42) 35 (28.00) 45(32.85) 148 (29.01) | 32 (12.90) 29 (23.20) 16 (11.68) 77 (15.10) | 5 (2.02) 6 (4.80) 1 (0.73) 12 (2.35) |
Having a child with a developmental disability imposes a negative impact on me | |||||
Croatia North Macedonia Serbia Total | 84 (33.87) 24 (19.20) 36 (26.28) 144 (28.23) | 92 (37.10) 35 (28.00) 39 (28.47) 166 (32.54) | 49 (19.76) 33 (26.40) 34 (24.82) 116 (22.74) | 21 (8.47) 27 (21.60) 23 (16.79) 71 (13.92) | 2 (0.81) 6 (4.80) 5 (3.65) 13 (2.54) |
Statements | N (%) | ||||
---|---|---|---|---|---|
Very dissatisfied | Dissatisfied | Neither dissatisfied nor satisfied | Satisfied | Very satisfied | |
Support for my child by the teachers and school team of experts other than teachers (i.e. psychologist, occupational therapist, speech therapist to make progress in kindergarten/school | |||||
Croatia North Macedonia Serbia Total | 26 (10.48) 6 (4.80) 9 (6.57) 41 (8.03) | 30 (12.10) 25 (20.00) 12 (8.76) 67 (13.13) | 56 (22.58) 46 (36.80) 38 (27.74) 140 (27.45) | 89 (35.89) 29 (23.20) 52 (37.96) 170 (33.33) | 47 (18.95) 19 (15.20) 26 (18.98) 92 (18.03) |
Support for my child to make progress at home | |||||
Croatia North Macedonia Serbia Total | 15 (6.05) 5 (4.00) 11 (8.03) 31 (6.08) | 25 (10.08) 25 (20.00) 17 (12.41) 67 (13.13) | 69 (27.82) 33 (26.40) 34 (24.82) 136 (26.66) | 98 (39.52) 41 (32.80) 50 (36.50) 189 (37.06) | 41 (16.53) 21 (16.80) 25 (18.25) 87 (17.06) |
Support for my child to make friends | |||||
Croatia North Macedonia Serbia Total | 31 (12.50) 17 (13.60) 7 (5.11) 55 (10.78) | 39 (15.73) 36 (28.80) 28 (20.44) 103 (20.20) | 78 (31.45) 37 (29.60) 59 (43.07) 174 (34.11) | 86 (34.68) 29 (23.20) 35 (25.55) 150 (29.41) | 14 (5.65) 6 (4.80) 8 (5.84) 28 (5.50) |
Relationship with the service providers (speech therapist, psychologists, special rehabilitator and educator) who work with my child | |||||
Croatia North Macedonia Serbia Total | 10 (4.03) 3 (2.40) 3 (4.38) 16 (3.13) | 20 (8.06) 9 (7.20) 7 (5.11) 36 (7.06) | 45 (18.15) 29 (23.20) 28 (20.44) 102 (20.00) | 117 (47.18) 57 (45.60) 61 (44.53) 235 (46.08) | 56 (22.58) 27 (21.60) 38 (27.74) 121 (23.72) |
Support from your friend | |||||
Croatia North Macedonia Serbia Total | 12 (4.84) 4 (3.20) 6 (4.38) 22 (4.31) | 28 (11.29) 16 (12.80) 17 (12.41) 61 (11.96) | 62 (25.00) 42 (33.60) 34 (24.82) 138 (27.06) | 100 (40.32) 47 (37.60) 60 (43.80) 207 (40.59) | 46 (18.55) 16 (12.80) 20 (14.60) 82 (16.08) |
Support from your family | |||||
Croatia North Macedonia Serbia Total | 12 (4.84) 4 (3.20) 5 (3.65) 21 (4.12) | 25 (10.08) 8 (6.40) 10 (7.30) 43 (8.43) | 59 (23.79) 25 (20.00) 23 (16.79) 107 (20.98) | 96 (38.71) 53 (42.40) 52 (37.96) 201 (39.41) | 56 (22.58) 35 (28.00) 47 (34.31) 138 (27.06) |