Predictors of Caregivers’ Satisfaction with the Management of Children with Autism Spectrum Disorder: A Study at Multiple Levels of Health Care
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Setting and Participants
2.2. Parent Satisfaction Scale, Malay Version (PSS-M)
2.3. Statistical Analysis
2.4. Ethical Consideration
3. Results
3.1. Socio-Demographic Characteristics of the Caregivers
3.2. Socio-Demographic Characteristics of the ASD Children
3.3. Management of Children with ASD and Level of Caregivers’ Satisfaction (n = 227)
3.4. Level of Satisfaction with the Relationship with Professionals at Different Health Care Facilities
3.5. The Predictors of Caregivers’ Satisfaction
4. Discussion
4.1. Management of Children with ASD and Caregivers’ Satisfaction at Different Levels of Health Care
4.1.1. Prior to Diagnosis
4.1.2. Process of Diagnosis
4.1.3. Support Post-diagnosis
4.2. Level of Satisfaction with the Relationship with Professionals at Different Health Care Facilities
4.3. Predictors of Caregivers’ Satisfaction with the Health Care Management of Children with ASD
5. Study Limitations
6. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Variables | Frequency (%) | Mean (SD) |
---|---|---|
Age | 38.91 (8.26) | |
Occupation | ||
Professional | 89(39.2) | |
Non-Professional | 59(26.0) | |
Housewife/Unemployed | 79(34.8) | |
Main Caregiver | ||
Mother | 127(55.9) | |
Father | 19(8.4) | |
Both | 73(32.2) | |
Others | 8(3.5) | |
Ethnicity | ||
Malay | 210 (92.5) | |
Non-Malay (Chinese, Siamese) | 17 (7.5) | |
Caregiver Education | ||
Secondary school and below | 82(36.1) | |
Diploma above | 145(63.9) | |
Household income (Ringgit Malaysia (RM)) | ||
≤RM 2000 | 63(27.8) | |
RM 2000 till less than RM 5000 | 88(38.8) | |
RM 5000 till less than RM 8000 | 41(18.1) | |
≥RM 8000 | 35(15.4) | |
Problem with transportation | ||
Yes | 26(11.5) | |
No | 201(88.5) | |
Has medical problem | ||
Yes | 11(4.8) | |
No | 216(95.2) |
Variables | Frequency (%) | Mean (SD) |
---|---|---|
Age | 7.45(3.54) | |
Gender | ||
Boy | 188(82.8) | |
Girl | 39(17.20) | |
ASD with comorbidity | ||
Yes | 114(50.2) | |
No | 113(49.8) | |
Age of child when caregiver start to show concern (year) | 2.66(1.66) | |
Caregiver concern and worries when the child has: | ||
Speech delay | ||
Yes | 212(93.4) | |
No | 15(6.6) | |
Delay walking | ||
Yes | 46(20.3) | |
No | 181(79.7) | |
Social problem | ||
Yes | 137 (60.4) | |
No | 90(39.6) | |
Dislike changes | ||
Yes | 84(37.0) | |
No | 143(63.0) | |
Hyperactive child | ||
Yes | 112(49.3) | |
No | 115(56.8) | |
Learning disability | ||
Yes | 98(43.2) | |
No | 129(56.8) | |
Medical problem | ||
Yes | 19(8.4) | |
No | 208(91.6) | |
Hearing Problem | ||
Yes | 34(15.0) | |
No | 195(85.0) | |
Sensory Hypersensitivity | ||
Yes | 84(37.0) | |
No | 143(63.0) | |
Sleeping problem | ||
Yes | 77(33.9) | |
No | 150(66.1) | |
Does the child attend school? | ||
Not schooling | 43 (18.9) | |
Government school | 67(29.5) | |
Private school | 117(51.6) | |
Age of diagnosis with ASD (year) | 4.98(1.85) | |
Age of child when caregiver seek help for first time (year) | 3.72(2.08) |
Item Describing Interpersonal Relationship with Professionals (Availability, Attitudes, Helpfulness, Supportiveness, Inclusion, and Decision Making) | Mean (SD) | ||||||||
---|---|---|---|---|---|---|---|---|---|
Primary Care (n = 146) | Secondary Care (n = 46) | Tertiary Care (n = 227) | |||||||
Each Item | Min, Max | Total Score | Each Item | Min, Max | Total Score | Each Item | Min, Max | Total Score | |
1. Overall, I was satisfied with the staff | 2.46 (0.96) | 1, 4 | 26.55 (7.16) | 2.87 (0.65) | 1, 4 | 30.06 (6.47) | 3.04 (0.65) | 0, 4 | 31.79 (6.25) |
2. I was satisfied with the availability of the staff | 2.35 (1.04) | 0, 4 | 2.80 (0.86) | 1, 4 | 3.04 (0.65) | 0, 4 | |||
3. I was satisfied with the way the staff helped me understand my child’s problems | 2.13 (1.11) | 0, 4 | 2.65 (0.90) | 1, 4 | 2.89 (0.86) | 0, 4 | |||
4. I was satisfied with the convenience of appointments with the staff | 2.60 (0.96) | 0, 4 | 2.76 (0.97) | 1, 4 | 2.56 (1.12) | 0, 4 | |||
5. I was satisfied with the caring and concern the staff showed for my child | 2.40 (1.07) | 1, 4 | 2.65 (0.88) | 1, 4 | 2.94 (0.83) | 0, 4 | |||
6. I was satisfied with how the staff treated me with respect | 2.71 (0.88) | 1, 4 | 2.76 (0.82) | 1, 4 | 3.00 (0.73) | 0, 4 | |||
7. I was satisfied with how the staff listened to what I had to say | 2.10 (1.11) | 1, 4 | 2.61 (0.98) | 1, 4 | 2.88 (0.87) | 0, 4 | |||
8. I was satisfied with how the staff kept me informed about changes in the care of my child | 1.96 (1.06) | 0, 4 | 2.57 (0.98) | 1, 4 | 2.81 (0.89) | 0, 4 | |||
9. I was satisfied with how the staff helped me find the services my child needed | 2.66 (0.82) | 1, 4 | 2.89 (0.64) | 1, 4 | 2.96 (0.76) | 0, 4 | |||
10. I was satisfied with how the staff included me in decision making about my child’s treatment | 2.67 (0.83) | 1, 4 | 2.80 (0.75) | 1, 4 | 2.85 (0.82) | 0, 4 | |||
11. I was satisfied with the support I received from the staff | 2.51 (0.98) | 1, 4 | 2.70 (0.84) | 1, 4 | 2.07 (1.14) | 0, 4 |
Variables | Mean Satisfaction Score (SD) | Simple Linear Regression | Multiple Linear Regression | ||
---|---|---|---|---|---|
ba (95% CI) | p-value | ba (95% CI) | p-value | ||
Household income (RM) | |||||
<2000 | 26.58 (1.20) | 0 | 0 | ||
2000–5000 | 26.49 (0.94) | −0.12 (−2.98, 2.74) | 0.942 | 1.64 (−0.71,3.98) | 0.174 |
5001–8000 | 28.47 (1.42) | 1.89 (1.78, 5.56) | 0.321 | 3.34 (0.32, 6.37) | 0.028 |
>8000 | 22.70 (1.69) | −3.89 (−8.75, 0.98) | 0.123 | 0.32 (−3.86,4.49) | 0.882 |
Presence of sensory hypersensitivity | |||||
No | 27.76 (0.69) | 0 | |||
Yes | 24.63 (1.18) | −3.13 (−5.64, −0.62) | 0.016 | −2.33 (−4.47, −0.19) | 0.035 |
Consulted doctors (for diagnosis confirmation) | |||||
3 times or less | 27.90 (0.84) | 0 | |||
More than 3 times | 24.74 (0.94) | −2.56 (−5.05, −0.08) | 0.046 | −2.25 (−4.39, −0.12) | 0.041 |
Waiting time | |||||
Less than 30 min | 31.82 (1.25) | 0 | 0 | ||
30 min to 1 h | 26.62 (0.81) | −5.19 (−8.32, −2.08) | 0.001 | −2.51 (−5.42,0.39) | 0.091 |
1 h to 2 h | 26.26 (1.23) | −5.56 (−9.16, −1.96) | 0.003 | −2.11 (−5.55,1.33) | 0.232 |
More than 2 h | 19.50 (1.82) | −12.318 (−16.44, −8.19) | <0.001 | −6.78 (−10.88, 2.40) | 0.001 |
Satisfied with waiting time | |||||
No | 23.52 (0.79) | 0 | |||
Yes | 30.21 (0.81) | 6.69 (4.46, 8.92) | <0.001 | 3.88 (1.60, 6.22) | <0.001 |
Satisfied with consultation time with doctors | |||||
No | 23.83 (0.78) | 0 | |||
Yes | 29.53 (0.88) | 5.70 (3.39, 8.00) | <0.001 | 2.71 (0.36, 5.06) | 0.025 |
Variables | Mean Satisfaction Score (SD) | Simple Linear Regression | Multiple Linear Regression | ||
---|---|---|---|---|---|
ba (95% CI) | p-value | ba (95% CI) | p-value | ||
Caregiver education | |||||
Secondary school or below | 32.72 (1.19) | 0 | |||
Diploma or above | 26.80 (1.26) | −5.93(-9.35, −2.51) | <0.001 | −5.99(−8.76, −3.22) | <0.001 |
Satisfied with occupational therapy appointment | |||||
No | 24.87 (1.70) | 0 | |||
Yes | 31.78 (0.96) | 6.92 (3.34, 10.49) | <0.001 | 4.05 (0.99, 7.12) | 0.012 |
Satisfied with consultation time with doctors | |||||
No | 25.50 1.68) | 0 | |||
Yes | 31.68 (1.00) | 6.18 (2.56, 9.79) | <0.001 | 5.93 (2.94, 8.91) | <0.001 |
Variables | Mean Satisfaction Score (SD) | Simple Linear Regression | Multiple Linear Regression | ||
---|---|---|---|---|---|
ba (95% CI) | p-value | ba (95% CI) | p-value | ||
Caregiver with medical problems | |||||
No | 31.25 (0.34) | 0 | 0.013 | ||
Yes | 26.45 (3.37) | −4.80 (−8.55, −1.05) | −6.09 (−9.32, −2.85) | <0.001 | |
Presence of sleeping problems | |||||
No | 30.71 (0.54) | 0 | |||
Yes | 31.64 (0.64) | 0.92 (−0.79, 2.65) | 0.291 | 1.65 (0.09, 3.11) | 0.035 |
Offered support group post-diagnosis | |||||
No | 30.79 (0.40) | 0 | |||
Yes | 33.94 (2.47) | 3.15 (0.08, 6.23) | 0.046 | 3.11 (0.48, 5.73) | 0.021 |
Frequency of occupational therapy | |||||
Once monthly or less | 30.87 (0.41) | 0 | |||
Twice monthly or more | 36.67 (4.04) | 5.79 (0.76, 10.83) | 0.025 | −5.23 (1.00, 9.46) | 0.016 |
Satisfied with frequency of appointments with speech therapist | |||||
No | 29.70 (0.61) | 0 | |||
Yes | 32.62 (0.53) | 2.92 (−9.25, 7.84) | <0.001 | 1.66 (0.20, 3.11) | 0.026 |
Satisfied with frequency of occupational therapy appointments | |||||
No | 26.14 (1.89) | 0 | |||
Yes | 31.52 (0.40) | 5.38 (2.65, 8.11) | <0.001 | 3.82 (1.35, 6.31) | 0.003 |
Satisfied with waiting time | |||||
No | 29.14 (0.54) | 0 | |||
Yes | 32.42 (0.57) | 3.28 (1.68, 4.87) | <0.001 | 2.55 (1.12, 3.98) | <0.001 |
Satisfied with doctor’s knowledge and experience | |||||
No | 26.53 (0.80) | 0 | |||
Yes | 31.98 (0.45) | 5.46 (3.43, 7.47) | <0.001 | 4.39 (2.51, 6.29) | <0.001 |
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Nik Adib, N.A.; Ibrahim, M.I.; Ab Rahman, A.; Bakar, R.S.; Yahaya, N.A.; Hussin, S.; Wan Mansor, W.N.A. Predictors of Caregivers’ Satisfaction with the Management of Children with Autism Spectrum Disorder: A Study at Multiple Levels of Health Care. Int. J. Environ. Res. Public Health 2019, 16, 1684. https://doi.org/10.3390/ijerph16101684
Nik Adib NA, Ibrahim MI, Ab Rahman A, Bakar RS, Yahaya NA, Hussin S, Wan Mansor WNA. Predictors of Caregivers’ Satisfaction with the Management of Children with Autism Spectrum Disorder: A Study at Multiple Levels of Health Care. International Journal of Environmental Research and Public Health. 2019; 16(10):1684. https://doi.org/10.3390/ijerph16101684
Chicago/Turabian StyleNik Adib, Nik Aida, Mohd Ismail Ibrahim, Azriani Ab Rahman, Raishan Shafini Bakar, Nor Azni Yahaya, Suria Hussin, and Wan Nor Arifin Wan Mansor. 2019. "Predictors of Caregivers’ Satisfaction with the Management of Children with Autism Spectrum Disorder: A Study at Multiple Levels of Health Care" International Journal of Environmental Research and Public Health 16, no. 10: 1684. https://doi.org/10.3390/ijerph16101684