Demographic and other related characteristics
Out of the 200 caregivers that were 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% of caregivers do not know their HIV status. Also, 60.6% of caregivers are members of the nuclear family. 62.8% of the caregivers had a problem with keeping to the timing of medication with 35.1% of this occurring in the morning, and 15.4 % of problems occurring in the evening. More than half (56.9%) of the caregivers had difficulty in getting their child to take their medication. Close to two-thirds (61.7%) of children in this 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 status
|
Adherent
|
11
|
5.9
|
Non-Adherent
|
177
|
94.1
|
Factors affecting non-adherence
The study showed that three factors influenced paediatric HIV patient adherence to HAART, and they include child-related factors, caregiver related factors and institutional factors. Formulation problem (72.3%) and bitter medication (52.7%) were the most common child-related factors affecting paediatric HIV patient adherence to HAART. The commonest caregiver related factors were "didn't want others to see" (61.7%), "was away from home" (60.6%), "didn’t have money to take child to the hospital” (56.9%), “forgetful” (38.8%) and “don’t know how to use the medication” (11.2%). In the case of institutional factor, 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)
No money to take child to clinic 107(56.9) NA
Institutional related Factors
Medicine was not available in the clinic 5(2.7) NA
NA: Not Applicable; means answer was not provided by respondent
Factors affecting adherence
No Statistical significant association was seen between independent variables and adherence to HAART (dependent variable) (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 0.250 1.000
Childs nutritional status 0.071 0.789
Childs Age 3.174 0.075
Assessment of quality of life in paediatric HIV/AIDs patient on HAART
Table 4 shows the average transformed scores of the four different domains with the psychological domain [63.1(SD 17.7] and the social relationship domain [44.1(SD 18.2)] being the highest and lowest mean scores respectively.
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
Table 5 shows that there is a statistically significant difference between caregiver HIV/AIDS status and physical health (p=0.024) and psychological health (p<0,001) domains. Also, a significant difference was observed between caregiver type and all the quality of life domains except social health. In addition, there was a statistically significant difference between adherence to HAART and the physical health domain. Participants who were adherent to HAART were more likely to have improved physical health and Significant difference in social health was also seen for caregivers accompanying children aged less than five years.
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 type (taking child to clinic)
Parents (Mother/Father/Siblings) 58.0(10.6) 68.2(14.8) 43.0(18.2) 59.7(13.5)
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*** 0.280 <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 status
Adherent 64.6(8.1) 70.8(13.0) 47.7(24.3) 55.7(12.0)
Non-Adherent 56.1(11.7) 62.6(17.9) 43.9(17.8) 57.1(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 in physical health domain with HIV status of caregiver and adherence status. Our study also revealed a significant association between caregiver type to psychological health and 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
Dom1 Dom2 Dom3 Dom4
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 type (taking Child to clinic) Nuclear vs Extended Family -11.458/<0.001 -6.875/0.001
(-16.653,-6.263) (-10.775,-2.974)
Adherence status
Adherent vs -10.218/0.005
Non-adherence (-17.295,-3.141)
Coef: Unstandardized Beta value; Domain 1(Dom1): Physical Health; Domain 2(Dom2): Psychological Health; Domain 3(Dom3): Social Health Domain 4(Dom4): Environmental Health
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 0.750 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