The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa
Abstract
:1. Introduction
2. Aims
3. Materials and Methods
3.1. Study Design, Sampling and Participant Selection
3.2. Ethics
3.3. Participants
3.4. Materials
3.5. Data Collection
3.6. Data Analysis
4. Results
4.1. Internal Consistency of the FSS [72]
4.2. Social Support Reported by Caregivers of Children with Intellectual Disabilities in India and South Africa
Associations between Demographic Factors and Social Support
4.3. Participation and Social Support for Children with Intellectual Disabilities in India and South Africa
4.3.1. Self-Reported Participation of Children with Intellectual Disabilities
4.3.2. Proxy-Reported Participation of Children with Intellectual Disabilities
4.4. Association between Social Support and Participation
4.4.1. Association between Social Support and Caregiver-Reported Participation of Children with Intellectual Disabilities in India and South Africa
4.4.2. Associations between Social Support and Child-Reported Participation of Children with Intellectual Disabilities in India and South Africa
5. Discussion
5.1. Recommendations
5.2. Limitations
6. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Demographic Factor | India (n = 100) | South Africa (n = 123) | Combined Data (n = 223) | Equivalence p-Value |
---|---|---|---|---|
Caregiver respondent (%) 1 | ||||
Mother | 33.8 | 39.8 | 73.6 | 0.129 3 |
Father | 6.1 | 9.5 | 15.6 | |
Other | 3.5 | 7.4 | 10.8 | |
Caregiver education (%) 1 | ||||
Grade 11 or less | 23.1 | 17.8 | 40.9 | 0.000 *,2 |
Grade 12 | 7.1 | 17.8 | 24.9 | |
Degree | 12.0 | 8.9 | 20.9 | |
Other | 2.2 | 11.1 | 13.3 | |
Household income per month (%) 1 | ||||
<ZAR 4500 (≈EUR 220) | 1.8 | 26.2 | 28.0 | 0.000 *,2 |
ZAR 4501–ZAR 12,500 (≈EUR 600) | 4.4 | 12.4 | 16.9 | |
ZAR 12,501–ZAR 30,000 (≈EUR 1500) | 11.6 | 7.6 | 19.1 | |
ZAR 30,001–ZAR 52,000 (≈EUR 2500) | 5.8 | 3.6 | 9.3 | |
ZAR 52,001–ZAR 70,000 (≈EUR 3370) | 6.2 | 3.1 | 9.3 | |
>ZAR 70,001 (≈EUR 3370) | 14.7 | 2.7 | 17.3 | |
Number of children in the household (Median) | 2.0 | 3.0 | 2.0 | 0.000 *,2 |
Grandparents in household (%) 1 | 67.4 | 32.6 | 46.6 | 0.000 *,2 |
Additional family members in household (%) 1 | 47.7 | 52.3 | 50.6 | 0.000 *,2 |
Employment (%) 1 | ||||
Home executive/housewife | 5.1% | 20.8 | 14 | 0.000 *,2 |
Not working currently | 1.0 | 15.4 | 9.2 | |
Working part time | 11.1 | 12.3 | 11.8 | |
Working full time | 82.8 | 43.1 | 60.3 | |
Other | 0.0 | 8.5 | 4.8 | |
Child younger than 13 years (%) 1 | 51.0 | 43.1 | 46.5 | 0.232 2 |
Child 13 years or older (%) 1 | 49.0 | 56.9 | 53.5 | |
Sex (%) 1 | ||||
Male | 66.0 | 57.8 | 61.3 | 0.440 3 |
Female | 34.0 | 42.2 | 38.7 |
Family Support Scale 1 | India (n = 100) | South Africa (n = 123) | p-Value 2/ Mann-Whitney U 2 | ||
---|---|---|---|---|---|
Mode | % Not Available | Mode | % Not Available | ||
Family (Mean) | 2.69 | 1.00 | 2.74 | 4.80 | 0.931 3 |
My parents | 4.00 | 18.0 | 5.00 | 12.40 | 0.000 * |
My relatives | 4.00 | 5.00 | 0.00 | 33.90 | 0.000 * |
My older children | 0.00 | 70.00 | 0.00 | 19.30 | 0.000 * |
Spousal (Mean) | 3.23 | 3.00 | 2.23 | 6.50 | 0.000 *,3 |
My spouse’s parents | 4.00 | 25.00 | 0.00 | 30.60 | 0.000 * |
My spouse’s relatives | 4.00 | 7.00 | 5.00 | 23.60 | 0.000 * |
My spouse | 5.00 | 7.00 | 0.00 | 24.50 | 0.000 * |
My spouse’s friends | 4.00 | 13.00 | 0.00 | 42.50 | 0.000 * |
Social (Mean) | 1.54 | 2.00 | 1.78 | 14.60 | 0.230 3 |
My friends | 4.00 | 13.00 | 0.00 | 35.10 | 0.000 * |
My neighbours | 4.00 | 8.00 | 0.00 | 36.00 | 0.000 * |
Other parents | 4.00 | 10.00 | 0.00 | 43.20 | 0.000 * |
Co-workers | 0.00 | 66.00 | 0.00 | 48.10 | 0.000 * |
Parent group members | 0.00 | 78.00 | 0.00 | 68.60 | 0.118 |
Social groups | 0.00 | 89.00 | 0.00 | 59.40 | 0.000 * |
Church/spiritual | 0.00 | 96.00 | 0.00 | 40.40 | 0.000 * |
Professional (Mean) | 2.12 | 6.00 | 2.33 | 4.00 | 0.431 3 |
Family doctor | 4.00 | 9.00 | 0.00 | 31.90 | 0.000 * |
Early childhood intervention | 0.00 | 91.00 | 0.00 | 52.30 | 0.000 * |
School/day care | 4.00 | 19.00 | 0.00 | 36.30 | 0.000 * |
Professionals | 4.00 | 16.00 | 5.00 | 27.50 | 0.000 * |
Organisations Non-/Governmental | 0.00 | 92.00 | 0.00 | 67.30 | 0.000 * |
Demographic Factors | Family | Spousal | Social | Professional | ||||
---|---|---|---|---|---|---|---|---|
India | South Africa | India | South Africa | India | South Africa | India | South Africa | |
Relationship to child 1 | 0.023 * | 0.030 * | 0.957 | 0.067 | 0.221 | 0.807 | 0.150 | 0.215 |
Education 1 | 0.466 | 0.566 | 0.112 | 0.816 | 0.773 | 0.761 | 0.511 | 0.364 |
Employment 1 | 0.940 | 0.112 | 00.577 | 0.205 | 0.016 * | 0.139 | 0.547 | 0.249 |
Income 1 | 0.716 | 0.315 | 0.041 * | 0.946 | 0.858 | 0.013 | 0.540 | 0.262 |
Home language 2 | 0.806 | 0.420 | 0.906 | 0.234 | 0.560 | 0.059 | 0.166 | 0.031 * |
Number of children in the home 1 | 0.218 | 0.246 | 0.711 | 0.311 | 0.290 | 0.814 | 0.290 | 0.287 |
Number of grandparents in the home 1 | 0.693 | 0.214 | 0.136 | 0.350 | 0.335 | 0.824 | 0.587 | 0.419 |
Other relatives in the home 1 | 0.637 | 0.545 | 0.712 | 0.649 | 0.913 | 0.602 | 0.090 | 0.309 |
Child’s sex 1 | 0.038 * | 0.820 | 0.933 | 0.905 | 0.835 | 0.628 | 0.979 | 0.727 |
Child’s age (<13/>13 years) 1 | 0.443 | 0.507 | 0.224 | 0.169 | 0.042 * | 0.070 | 0.859 | 0.826 |
Additional impairments 1 | 0.724 | 0.296 | 0.723 | 0.597 | 0.396 | 0.175 | 0.091 | 0.129 |
Participation Domains or Activities | Family | Spousal | Social | Professional | ||||
---|---|---|---|---|---|---|---|---|
India | South Africa | India | South Africa | India | South Africa | India | South Africa | |
Participation, as Reported by Caregivers | ||||||||
Overall | 0.248 | 0.850 | 0.923 | 0.343 | 0.05 *1 | 0.735 | 0.504 | 0.625 |
Informal domain | 0.165 | 0.846 | 0.902 | 0.549 | 0.123 *,3 | 0.462 | 0.681 | 0.960 |
Formal domain | 0.244 | 0.365 | 0.776 | 0.181 | 0.017 *,1 | 0.882 | 0.852 | 0.301 |
Recreational activities | 0.097 | 0.995 | 0.300 | 0.675 | 0.611 | 0.261 | 0.606 | 0.474 |
Active-physical activities | 0.937 | 0.696 | 0.880 | 0.990 | 0.453 | 0.682 | 0.255 | 0.998 |
Social activities | 0.335 | 0.221 | 0.542 | 0.044 *1 | 0.062 | 0.863 | 0.378 | 0.496 |
Skills-based activities | 0.322 | 0.214 | 0.369 | 0.107 | 0.207 | 0.963 | 0.252 | 0.265 |
Self-improvement activities | 0.357 | 0.651 | 0.251 | 0.431 | 0.377 | 0.484 | 0.908 | 0.677 |
Participation Intensity, as Reported by Caregivers | ||||||||
Overall | 0.521 | 0.020 *,2 | 0.344 | 0.450 | 0.560 | 0.007 **,1 | 0.268 | 0.076 |
Informal domain | 0.803 | 0.042 *,1 | 0.874 | 0.450 | 0.860 | 0.040 *,1 | 0.056 | 0.172 |
Formal domain | 0.700 | 0.136 | 0.109 | 0.781 | 0.009 **,1 | 0.066 | 0.004 **,2 | 0.477 |
Recreational activities | 0.793 | 0.744 | 0.430 | 0.831 | 0.790 | 0.187 | 0.821 | 0.421 |
Active-physical activities | 0.913 | 0.174 | 0.849 | 0.690 | 0.238 | 0.545 | 0.723 | 0.083 |
Social activities | 0.903 | 0.428 | 0.762 | 0.711 | 0.832 | 0.034 *,1 | 0.016 *,1 | 0.302 |
Skills-based activities | 0.946 | 0.270 | 0.095 | 0.397 | 0.363 | 0.087 | 0.942 | 0.803 |
Self-improvement activities | 0.458 | 0.029 *,1 | 0.754 | 0.366 | 0.842 | 0.075 | 0.098 | 0.705 |
Participation with Whom, as Reported by Caregivers | ||||||||
Overall | 0.688 | 0.300 | 0.250 | 0.048 *,1 | 0.379 | 0.055 | 0.878 | 0.046 *,1 |
Informal domain | 0.766 | 0.261 | 0.256 | 0.042 *,1 | 0.544 | 0.035 *,1 | 0.513 | 0.018 *,1 |
Formal domain | 0.665 | 0.407 | 0.429 | 0.278 | 0.131 | 0.654 | 0.311 | 0.887 |
Recreational activities | 0.908 | 0.535 | 0.033 *,1 | 0.302 | 0.637 | 0.008 **,1 | 0.765 | 0.058 |
Active-physical activities | 0.423 | 0.298 | 0.453 | 0.066 | 0.530 | 0.543 | 0.511 | 0.983 |
Social activities | 0.700 | 0.212 | 0.193 | 0.081 | 0.465 | 0.134 | 0.053 | 0.348 |
Skills-based activities | 0.276 | 0.114 | 0.451 | 0.250 | 0.784 | 0.232 | 0.134 | 0.716 |
Self-improvement activities | 0.452 | 0.622 | 0.601 | 0.112 | 0.247 | 0.123 | 0.189 | 0.070 |
Participation Where, as Reported by Caregivers | ||||||||
Overall | 0.275 | 0.119 | 0.080 | 0.044 *,1 | 0.315 | 0.284 | 0.938 | 0.896 |
Informal domain | 0.262 | 0.107 | 0.036 *,1 | 0.034 *,1 | 0.832 | 0.448 | 0.733 | 0.854 |
Formal domain | 0.422 | 0.025 *,1 | 0.889 | 0.093 | 0.001 **,2 | 0.206 | 0.258 | 0.994 |
Recreational activities | 0.797 | 0.651 | 0.739 | 0.751 | 0.243 | 0.056 | 0.439 | 0.338 |
Active-physical activities | 0.275 | 0.044 * | 0.233 | 0.045 * | 0.130 | 0.781 | 0.589 | 0.539 |
Social activities | 0.155 | 0.891 | 0.029 *,1 | 0.287 | 0.455 | 0.615 | 0.109 | 0.542 |
Skills-based activities | 0.690 | 0.015 *,1 | 0.699 | 0.083 | 0.197 | 0.111 | 1.000 | 0.909 |
Self-improvement activities | 0.241 | 0.251 | 0.992 | 0.122 | 0.671 | 0.123 | 0.135 | 0.459 |
Participation Enjoyment, as Reported by Caregivers | ||||||||
Overall | 0.121 | 00.761 | 0.305 | 0.424 | 0.145 | 0.694 | 0.036 *,2 | 0.283 |
Informal domain | 0.079 | 0.801 | 0.273 | 0.800 | 0.993 | 0.817 | 0.046 *,1 | 0.205 |
Formal domain | 0.444 | 0.603 | 0.425 | 0.036 *,1 | 0.045 *,1 | 0.968 | 0.647 | 0.848 |
Recreational activities | 0.121 | 0.641 | 0.331 | 0.900 | 0.157 | 0.615 | 0.121 | 0.825 |
Active-physical activities | 0.024 *,2 | 0.368 | 0.373 | 0.516 | 0.165 | 0.481 | 0.033 *,2 | 0.915 |
Social activities | 0.089 | 0.533 | 0.100 | 0.795 | 0.256 | 0.230 | 0.590 | 0.199 |
Skills-based activities | 0.137 | 0.123 | 0.763 | 0.685 | 0.575 | 0.518 | 0.267 | 0.546 |
Self-improvement activities | 0.877 | 0.870 | 0.198 | 0.104 | 0.725 | 0.212 | 0.070 | 0.116 |
Participation Domains and Activities | Family | Spousal | Social | Professional | ||||
---|---|---|---|---|---|---|---|---|
India | South Africa | India | South Africa | India | South Africa | India | South Africa | |
Participation, as Reported by Children | ||||||||
Overall | 0.009 **,1 | 0.243 | 0.048 *,1 | 0.525 | ||||
Informal domain | 0.010 *,1 | 0.228 | 0.040 *,1 | 0.363 | ||||
Active-physical activities | 0.048 *1 | 0.019 *,1 | 0.142 | 0.397 | 0.475 | 0.291 | 0.631 | 0.938 |
Social activities | 0.010 *,1 | 0.062 | 0.007 *,1 | 0.191 | ||||
Skills-based activities | 0.022 *,1 | 0.098 | 0.053 | 0.756 | ||||
Participation Intensity, as Reported by Children | ||||||||
Social activities | 0.701 | 0.438 | 0.041 *,1 | 0.571 | ||||
Recreational activities | 0.068 | 0.336 | 0.012*,1 | 0.053 | ||||
Participation with Whom, as Reported by Children | ||||||||
Recreational activities | 0.033 *,1 | 0.539 | 0.758 | 0.066 | ||||
Participation Where, as Reported by Children | ||||||||
Formal domain | 0.565 | 0.280 | 0.006 **,1 | 0.054 | ||||
Self-improvement activities | 0.025 *,1 | 0.145 | 0.100 | 0.330 | ||||
Informal domain | 0.014 *,1 | 0.416 | 0.202 | 0.928 | ||||
Social activities | 0.013 *,1 | 0.103 | 0.082 | 0.468 | ||||
Participation Enjoyment, as Reported by Children | ||||||||
Formal domain | 0.049 *,1 | 0.216 | 0.301 | 0.072 | ||||
Active-physical activities | 0.552 | 0.380 | 0.539 | 0.015 *,1 | ||||
Self-improvement activities | 0.013 *,1 | 0.112 | 0.629 | 0.527 |
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Dada, S.; Bastable, K.; Halder, S. The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa. Int. J. Environ. Res. Public Health 2020, 17, 6644. https://doi.org/10.3390/ijerph17186644
Dada S, Bastable K, Halder S. The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa. International Journal of Environmental Research and Public Health. 2020; 17(18):6644. https://doi.org/10.3390/ijerph17186644
Chicago/Turabian StyleDada, Shakila, Kirsty Bastable, and Santoshi Halder. 2020. "The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa" International Journal of Environmental Research and Public Health 17, no. 18: 6644. https://doi.org/10.3390/ijerph17186644