Demographic and other related characteristics
Out of the 200 caregivers that was approached and invited, 188 consented to participate and their data were included in our final analysis. Table 1 shows that 74.5% of caregivers were aged 30 years or older, 76.6% of caregivers were female, 43.6 % were HIV positive and 33% caregivers do not know their HIV status, while 60.6% of caregivers are members of the nuclear family. 62.8% of the caregivers had problem with keeping to timing of medication with 35.1% of this occurring in the morning and 15.4 % of problems occurring in the evening. 56.9% of caregivers also agreed that they had difficulty in getting child to take their medication. 61.7% of children in the study were less than five years, 54.3% of the children were male, and 76.1 % of the children were involved in an institutional nutritional program. Only 5.9% paediatric age group were adherent to Highly Active Antiretroviral Therapy (HAART) while 94.1% were non-adherent.
Table 1 Demographic and other Related Characteristics
|
Caregiver Age
|
Frequency
|
Percentage
|
< 30years
|
48
|
25.5
|
≥ 30years
|
140
|
74.5
|
Care giver Sex
|
Male
|
44
|
23.4
|
Female
|
144
|
76.6
|
Caregiver HIV Status
|
Positive
|
82
|
43.6
|
Negative
|
44
|
23.4
|
Don’t Know
|
62
|
33.0
|
Caregiver Relationship to Child
|
|
Mother/Father/Siblings
|
114
|
60.6
|
Close relatives(GrandParents/Aunties/Uncles)
|
70
|
37.2
|
Neighbour/Relative outside home
|
4
|
2.1
|
Child's Sex
|
Male
|
102
|
54.3
|
Female
|
86
|
45.7
|
Child's Age
|
< 5years
|
116
|
61.7
|
≥ 5 years
|
72
|
38.3
|
Involved in Nutritional Program
|
Yes
|
143
|
76.1
|
No
|
45
|
23.9
|
Problem with keeping to time of medication
|
Yes
|
118
|
62.8
|
No
|
70
|
37.2
|
When does medicine administration problem occur?
|
|
Mornings
|
66
|
35.1
|
Evenings
|
29
|
15.4
|
Weekends
|
9
|
4.8
|
Weekdays
|
14
|
7.5
|
Not Applicable
|
70
|
37.2
|
Problems in getting child to take medication
|
Yes
|
107
|
56.9
|
No
|
81
|
43.1
|
Child's HAART Adherence Level
|
Adherent
|
11
|
5.9
|
Non-Adherent
|
177
|
94.1
|
Factors affecting non-adherence
The study showed that three factors that influence Paediatric HIV patient adherence to HAART includes child related factors, caregiver related factors and Institutional factors. Formulation problem (72.3%) and bitter medication (52.7%) were top on the list for child related factors. Top on the list for caregiver related factors are “did not want others to see” (61.7%), “was away from home” (60.6%) and “don’t know how to use the medication” (11.2%). For related institutional factors, 56.9% of the caregivers stated that they did not have money to take child to the hospital while 2.7% stated that “medicine was not available in the clinic”. (Table 2).
Table 2: Factors affecting adherence to highly active antiretroviral therapy
Factors Yes No
N (%) N (%)
Child Related factors
Problem with formulation 52(72.3) 138(27.7)
Bitter medication 99(52.7) 89(47.3)
Caregiver Related factors
I was away from Home 114(60.6) 74(39.4)
Always around child 7(3.7) 181(96.3)
Did not want others to see 116(61.7) 72(38.3)
Don’t Know how to use medicine 21(11.2) 167(88.8)
Too busy and forget 73(38.8) 115(61.2)
Institutional related Factors
No money to take child to clinic 107(56.9) NA
Medicine was not available in the clinic 5(2.7) NA
None of the above 76(40.4) NA
NA: Not Applicable
Factors affecting adherence
No Statistical significant association was seen between independent variables and adherence to HAART (Table 3).
Table 3: Association between independent variables and adherence to HAART
Characteristic Chi-Square value P-Value
Caregiver Grouped Age 1.661 0.197
Caregiver Sex 1.335 0.248
Caregiver HIV/AIDS status 4.347 0.093
Caregiver Relationship 0.25 1
Childs nutritional status 0.071 0.789
Childs Age 3.174 0.075
<: Less than
Assessment of quality of life in paediatric HIV/AIDs patient on HAART
The average transformed scores of the four different domains with the highest average score of 63.1(SD 17.7) in the Psychological domain, while the lowest mean score was 44.1(SD 18.2) in the social relationship domain. (Table 4).
Table 4: Transformed Quality of Life(QOL) Domain Scores (N=188)
QOL Domains Minimum Maximum Mean (SD)
Physical Health 21.4 82.1 56.6(11.6)
Psychological domain 4.2 91.7 63.1(17.7)
Social Relationship 12.5 87.5 44.1(18.2)
Environment 21.9 87.5 57.0(13.6)
Association of independent variables and quality of life domains
The mean scores of the study demography and characteristics among the four domains of quality of life showed significant difference for physical health, psychological Health and social health. There was significant difference in caregiver HIV status for physical health and psychological health domain and significant difference for caregiver relation for physical health, psychological health and environmental health. The study also showed significant difference for adherence in the physical health domain. The response from caregivers for children less than five years showed significant difference in social health. Female children also recorded mean scores higher than average for physical health and psychological health and Environmental health (Table 5).
Table 5: Bivariate associations between independent variables and quality of life
Characteristics Quality of Life Scores
Dom 1 Dom 2 Dom 3 Dom 4
Mean (SD) Mean (SD) Mean (SD) Mean (SD)
Caregiver Age
˂ 30 years 56.3(11.0) 63.9(15.4) 43.5(21.9) 58.98(12.2)
≥ 30years 56.7(11.9) 62.8(18.4) 44.4(16.9) 56.3(14.1)
P-value 0.834 0.713 0.772 0.243
Caregiver Sex
Male 56.1(10.5) 64.9(14.4) 40.3(11.7) 58.1(13.4)
Female 56.8(12.0) 62.5(18.6) 45.3(19.6) 56.7(13.7)
P-value 0.765 0.444 0.112 0.543
Caregiver HIV status
Positive 58.3(11.7) 68.2(14.7) 42.5(20.2) 59.3(13.7)
Negative 58.2(9.5) 61.5(11.3) 47.2(16.1) 53.8(9.7)
Don’t Know 53.3(12.4) 57.5(22.6) 44.2((16.6) 56.2(15.4)
P-value 0.024* < 0.001*** 0.397 0.081
Involvement in Nutritional program
Yes 57.0(11.5) 63.1(16.9) 44.3(17.3) 56.2(12.5)
No 55.3(12.2) 62.9(20.2) 43.6(20.9) 59.5(16.7)
P-value 0.387 0.929 0.821 0.156
Caregiver takes child to clinic
Parents (Mother/Father/Siblings) 58.0(10.6) 68.2(14.81) 43.0(18.22) 59.7(13.47)
Close relatives (Grandparents
/Aunties/Uncles) 55.7(11.6) 56.9(17.1) 45.4(18.2) 53.8(12.3)
Neighbour/Relative outside home 34.8(19.6) 26.0(27.1) 56.3(12.5) 36.7(13.1)
P-value < 0.001*** < 0.001*** 0.28 <0.001***
Child’s Age
< 5 years 56.7(10.8) 63.1(16.5) 47.0(18.7) 57.8(13.9)
≥ 5 years 56.5(12.9) 63.0(19.5) 39.6(16.4) 55.7(13.1)
P-value 0.903 0.973 0.006* 0.312
Child’s Sex
Male 55.2(12.5) 62.0(19.2) 44.7(19.9) 57.0(15.1)
Female 58.3(10.3) 64.3(15.8) 43.5(16.0) 57.0(11.7)
P-value 0.63 0.369 0.634 0.989
Adherence Level
Adherent 64.61(8.1) 70.83(13.0) 47.73(24.3) 55.68(12.0)
Non-Adherent 56.13(11.7) 62.59(17.9) 43.93(17.8) 57.08(13.6)
P-value 0.019* 0.134 0.502 0.742
*Significant; ***Very significant; Domain 1(Dom1): Physical Health; Domain 2(Dom2): Psychological Health; Domain 3(Dom3): Social Health Domain 4(Dom4): Environmental Health
Multivariate backward linear regression model after adjusting for other covariates revealed significant association between HIV status of caregiver. Our study also revealed a significant association between caregiver type to psychological health. A significant association is also seen for caregiver type to the environmental health domain (Table 6).
Table 6: Backward multiple linear regression analyses of factors significantly associated with quality of life of paediatric HIV/AIDs patient on HAART
Characteristics Quality of Life Scores
Physical Health Psychological Health Social Relationship Environment Health
Coef/P-value Coef/P-value Coef/P-Value Coef/P-value
(95%CI) (95%CI) (95%CI) (95%CI)
Caregiver HIV status
Positive Vs non-positive -4.299/0.014
(-7.714, -0.883)
Caregiver takes
Child to clinic
Nuclear vs Extended Family -11.458/<0.001 -6.875/0.001
(-16.653,-6.263) (-10.775,-2.974)
Adherence Level
Adherent vs -10.218/0.005
Non-adherence (-17.295,-3.141)
Coef: Unstandardized Beta value
Validity and reliability of questionnaire
Pearson’s Correlation was found to be significant for the four domains (Table 7) and Cronbach’s alpha was found to be 0.769.
Table 7: Correlation coefficients in two quality of life questions and four domains of the WHOQOL-BREF
Q1 Q2 Dom1 Dom2 Dom3 Dom4
Q1 CC 1 0.75 0.626 0.719 0.221 0.407
P-value < 0.001 < 0.001 < 0.001 0.002 < 0.001
Q2 CC 1 0.727 0.794 0.29 0.455
P-value < 0.001 < 0.001 < 0.001 < 0.001
Dom1 CC 1 0.806 0.323 0.551
P-value < 0.001 < 0.001 < 0.001
Dom2 CC 1 0.335 0.628
P-value < 0.001 < 0.001
Dom3 CC 1 0.238
P-value 0.001
Dom4 CC 1
CC: Correlation Coefficient; significant P-value at less than 0.05;
Q1: How can you rate your child’s quality of Life
Q2: How satisfied are you with your child’s health
Domain 1(Dom1): Physical Health; Domain 2(Dom2): Psychological Health;
Domain 3(Dom3): Social Health Domain 4(Dom4): Environmental Health