3.1 Socio-demographic characteristics of children and adolescents on ART
The cohort was observed for 1,030 children/adolescent, with 138 (13.4%) of them LTFU. Out of the 138 participants LTFU, fifty (50) were recovered and reengaged in care. At the end of follow up, 848 (82.3%) of HIV-infected children and adolescents were in care (Figure1). More than half (55.5%) of the participants were females. The median age of the children and adolescents was 12 ± 4.82years. More adolescents (10-19 years) were present in the cohort compared to children 0-9years (Figure 2), with most of the participants 342(33.0%) being older adolescents of age group 15-19 years. Close to half of the study participants had a primary level of education 559 (49%). More than half 604 (59%) of the children and adolescents live with their parents as their main caregivers with 377 (37%) of these caregivers having a secondary level of education. About a third of the caregivers 365 (35%) were farmers (Table 1).
Table 1: Socio-demographic characteristics of HIV-positive children and adolescents on ART at the treatment centers who were enrolled from January 1, 2018, to December 31, 2021.
Characteristic
|
Frequency
|
Percentage
|
Gender
|
|
|
Male
|
464
|
45.0
|
Female
|
566
|
55.0
|
Age category
|
|
|
0-4
|
96
|
9.3
|
5-9
|
259
|
25.1
|
10-14
|
333
|
32.3
|
15-19
|
342
|
33.2
|
Level of Education
|
|
|
Primary
|
559
|
54.3
|
Secondary
|
272
|
26.4
|
Tertiary
|
32
|
3.1
|
No formal education
|
74
|
37.2
|
Not of school age
|
47
|
4.6
|
Missing values
|
46
|
4.5
|
Health facility
|
|
|
HF 1
|
275
|
26.7
|
HF 2
|
270
|
26.2
|
HF 3
|
49
|
4.8
|
HF 4
|
103
|
10.0
|
HF 5
|
333
|
32.3
|
Residence
|
|
|
Urban
|
407
|
39.5
|
Rural
|
396
|
38.4
|
Semi-urban
|
227
|
22.0
|
Main daily caregiver
|
|
|
Parents
|
604
|
58.6
|
Relatives
|
209
|
20.3
|
Grandparents
|
70
|
6.8
|
Siblings
|
38
|
3.7
|
Missing values
|
109
|
10.6
|
Caregiver’s level of Education
|
|
|
No formal education
|
39
|
3.8
|
Primary
|
351
|
34.1
|
Secondary
|
377
|
36.6
|
Tertiary
|
81
|
7.9
|
Missing values
|
182
|
17.7
|
Caregiver’s occupation
|
|
|
Farmer
|
365
|
35.4
|
Business
|
206
|
20.0
|
Hairdresser
|
65
|
6.3
|
Tailor
|
61
|
5.9
|
Unemployed
|
34
|
3.3
|
Others
|
30
|
2.9
|
Driver
|
25
|
2.4
|
Teaching
|
25
|
2.4
|
HCW
|
21
|
2.0
|
Builder
|
24
|
2.3
|
Missing values
|
174
|
16.9
|
Distance to HF
|
|
|
<20km
|
740
|
71.8
|
20-50km
|
197
|
19.1
|
>50km
|
81
|
7.9
|
Missing values
|
12
|
1.2
|
HCW = Healthcare worker HF= Health facility
3.2 Baseline clinical characteristics of HIV-positive children and adolescents on ART
About a third (34.7%) of the children and adolescents in the cohort had WHO clinical stage I, 357(34.7%). A total of 304(29.5%) had a baseline CD4count greater than or equal to500cells/ml. Close to half of the adolescents (497 [48.3%]) were on Dolutegravir-based regimen. Many of the study participants 686 (66.6%) recorded a good history of adherence to ART as seen in records and as reported by healthcare workers More than half of the caregivers 586 (56.9%) were aware of their own HIV status as positive.
Table 2: Baseline clinical characteristics of HIV-positive children and adolescents on ART at the treatment centers who were enrolled from January 1, 2018 to December 31, 2021.
Characteristic
|
Frequency
|
Percentage
|
WHO stage
|
|
|
Stage I
|
357
|
34.7
|
Stage II
|
221
|
21.5
|
Stage III
|
237
|
23.0
|
Stage IV
|
92
|
8.9
|
Missing values
|
123
|
11.9
|
CD4 count(cells/ml)
|
|
|
<200
|
62
|
6.0
|
200-499
|
114
|
11.1
|
≥500
|
304
|
29.5
|
Unknown
|
550
|
53.4
|
ART regimen
|
|
|
ABC+3TC+DTG
|
146
|
14.2
|
AZT+3TC+NVP
|
62
|
6.0
|
ABC+3TC+LPV/r
|
135
|
13.1
|
ABC+3TC+EFV
|
33
|
3.2
|
TDF+3TC+DTG
|
497
|
48.3
|
TDF+3TC+EFV
|
48
|
4.7
|
Others
|
109
|
10.6
|
History of ART adherence
|
|
|
Good
|
686
|
66.6
|
Fair
|
194
|
18.8
|
Poor
|
120
|
11.7
|
Missing values
|
30
|
2.9
|
HIV status of caregiver
|
|
|
Positive
|
586
|
56.9
|
Negative
|
128
|
12.4
|
Unknown
|
316
|
30.7
|
|
|
|
Others=ABC+3TC+ATV/r, TDF+3TC+LPV/r, TDF+3TC+ATV/r, AZT+3TC+LPV/r,
HCW = Healthcare worker
3.3. Proportion of children and adolescents LTFU
A total of 138 HIV positive children and adolescents were LTFU. Of the 138, 79(57.2%) were children 0-9years while 59 (42.8%) were adolescents 10-19 (Figure 3). Older adolescents (15-19years) constituted 33 (24%) of those LTFU. A total of 50 (36.2%) children and adolescents were recovered and reengaged in care,
3.4 Incidence of Loss to Follow-Up of children and adolescents aggregated by gender, Age group and treatment Centers from January 1, 2018, to December 31, 2021.
The overall incidence of LTFU in children and adolescents was 33 LTFU per 1000 children/adolescent years while the incidence of death was 3 deaths per 1000 children/adolescents years and those transferred out (TO) was 7 per 1000 children/adolescent years. Over this period, 138(13.4) were LTFU, 14(1.4%) patients died, and overall attrition was 152(14.8%). LTFU occurred more in females 76(7.4%) than in males, while the proportion was more in children 5–9years old 44(4.3%) than in any other age group. Based on the health facility the proportion was more at health facility 1, 53(5.1%) in a rural setting than in any other health facility (Table 3).
Table 3: Incidence of Loss to Follow-Up of children and adolescents aggregated by gender, Age group and treatment Center from January 1, 2018, to December 31, 2021.
Variable
|
n (%)
|
LTFU (%)
|
Died (%)
|
TO (%)
|
Total
|
1030(100)
|
138(13.4)
|
14(1.4)
|
30(2.9)
|
Gender
|
|
|
|
|
Female
|
566(55)
|
76(7.4)
|
7(0.7)
|
16(1.6)
|
Male
|
464(45)
|
62(6.0)
|
7(0.7)
|
14(1.4)
|
Age group
|
|
|
|
|
0 - 4
|
96(9)
|
35(3.4)
|
4(0.4)
|
0
|
5 - 9
|
259(25)
|
44(4.3)
|
2(0.2)
|
7(0.7)
|
10 - 14
|
333(32)
|
26(2.5)
|
3(0.3)
|
7(0.7)
|
15 - 19
|
342(33)
|
33(3.2)
|
5(0.5)
|
16(1.6)
|
Health facility
|
|
|
|
|
HF1
|
275(27)
|
53(5.1)
|
4(0.4)
|
17(1.7)
|
HF2
|
270(26)
|
27(2.6)
|
1(0.1)
|
5(0.5)
|
HF3
|
49(5)
|
16(1.6)
|
0
|
2(0.2)
|
HF4
|
103(10)
|
15(1.5)
|
0
|
1(0.1)
|
HF5
|
333(32)
|
27(2.6)
|
9(0.9)
|
5(0.5)
|
HF=Health facility
3.5 Time until Loss to Follow-Up Among ART Attending children and adolescents on ART from January 1, 2018, to December 31, 2021.
In this study, all children, and adolescents on treatment between Jan 2018 and Sept 2021 were enrolled and followed until December 2021 for the occurrence of the event of interest (LTFU). Children and adolescents who exited or completed the study without the occurrence of the event of interest were censored. The minimum and the maximum follow-up period was three months and forty-eight months, respectively (Figure 4).The overall cumulative survival probability at the end of the 10th month was 0.96 (95% CI: 0.95- 0.97) while it was 0.89 (95% CI: 0.88-0.92) and 0.87 (95% CI: 0.85- 0.89) at the 20th and 30th follow-up month, respectively. In addition, the cumulative survival probability at the 40th and 48th follow-up month was 0.86 (95% CI: 0.84-0.88) and 0.86 (95% CI: 0.83, 0.88) respectively (Figure 1 of 4). The survival probability significantly decreased for children 0-4years, followed by children in the 5-9years category and older adolescents 15-19years. There was no statistically significant difference in survival probability for females and males. The survival probability significantly decreased for HF1 and HF3 treatment centers (Figure 4 of 4).
3.6 Predictors of loss to follow-up among children and adolescents
In our study, the following variables which were significant in univariate analysis were included in the cox proportional hazard multivariable model.: residence, type of caregiver, having a registered phone number for follow up calls, type of ART regimen, experience of regimen change, history of ART adherence, duration on ART and approximate distance between home and health facility. P-value less than 0.05 as a cutoff point was considered to be statistically significant. Children and adolescents in care at the HF1 treatment center had two times higher risk of loss to follow-up (AHR: 2.14; 95% CI:1.23-3.76) as compared with their counterparts at HF5. Similarly, children and adolescents receiving care at the HF2 in a rural setting had two times higher risk of loss to follow-up (AHR: 2.51; 95% CI: 1.40-4.53) as compared with their counterparts at the HF5. Children and adolescents in care at HF4 had two times higher risk of loss to follow-up (AHR: 2.02; 95% CI: 0.98-4.17) as compared with their counterparts at HF5 The risk of LTFU in children 5-9years (AHR: 0.55; 95% CI: 0.31-0.98) and adolescents 10-14 (AHR: 0.25; 95% CI: 0.13-0.49), 15-19(AHR: 0.34; 95% CI: 0.18-0.64) was lower compared with children 0-4 years. The risk of LTFU among ART attending children and adolescents who had non-biological caregiver was two times higher as compared with the counterparts who had a primary biological caregiver (AHR: 2.44; 95% CI: 1.59-3.74). The risk of LTFU in children and adolescents who were on sub-optimal regimens (AHR: 17.83; 95% CI: 11.00-29.00) and other (AHR: 6.83; 95% CI: 3.85-12.14) regimens was very high compared with those on the optimal regimen. Children and adolescents with a history of good adherence had a lower risk of LTFU (AHR: 0.52; 95% CI: 0.35-0.77) compared with their counterparts with poor or fair adherence. The risk of LTFU in children and adolescents with prolonged duration on ART i.e 13-24 months (AHR: 0.38; 95% CI: 0.19-0.74) and 25+ months (AHR: 0.20; 95% CI: 0.11-0.33) was lower compared with those with ≤12 months duration on ART. ART attending children and adolescents who had more than fifty kilometers distance between their homes and the health facility had two times higher risk of loss to follow-up as compared with their counterparts who had less than twenty kilometers distance from home to the health facility (AHR: 2.05 ; 95% CI: 1.10-3.20) (Table 4).
Table 4: Univariate and Multivariate Cox regression analysis for predictors of Attrition in HIV-positive children and adolescents on ART from January 1, 2018 to December 31, 2021.
Variable
|
Event
|
Censored
|
CHR(95%CI)
|
AHR(95%CI)
|
P-value
|
|
Gender
|
|
|
|
|
|
|
Male
|
62
|
402
|
1.00
|
1.00
|
|
|
Female
|
76
|
490
|
1.02 (0.70-1.38)
|
1.03 (0.70-1.51)
|
0.8751
|
|
Health facility
|
|
|
|
|
|
|
HF 5
|
27
|
306
|
1.00
|
1.00
|
|
|
HF 1
|
53
|
222
|
2.74 (1.73-4.36)
|
2.14 (1.23-3.76)
|
0.0081*
|
|
HF 2
|
27
|
243
|
1.58 (0.92-2.69)
|
2.51 (1.40-4.53)
|
0.0022*
|
|
HF 3
|
16
|
33
|
7.57 (4.10-14.13)
|
1.38 (0.71-2.69)
|
0.3466
|
|
HF 4
|
15
|
88
|
1.71 (0.91-3.21)
|
2.02 (0.98-4.17)
|
0.0567*
|
|
Age category
|
|
|
|
|
|
|
0-4
|
35
|
61
|
1.00
|
1.00
|
|
|
5-9
|
44
|
215
|
0.40 (0.25-0.62)
|
0.55 (0.31-0.98)
|
0.0412*
|
|
10-14
|
26
|
307
|
0.17 (0.10-0.29)
|
0.25 (0.13-0.49)
|
<0.0001*
|
|
15-19
|
33
|
309
|
0.22 (0.14-0.36)
|
0.34 (0.18-0.64)
|
0.0008*
|
|
Residence
|
|
|
|
|
|
|
Urban
|
37
|
370
|
1.00
|
1.00
|
|
|
Rural
|
77
|
319
|
2.24 (1.52-3.32)
|
1.37 (0.87-2.17)
|
0.1793
|
|
Semi-urban
|
24
|
203
|
1.15 (0.69-1.93)
|
1.46 (0.84-2.55)
|
0.1886
|
|
Main daily caregiver
|
|
|
|
|
|
|
Biological
|
76
|
560
|
1.00
|
1.00
|
|
|
Non-biological
|
33
|
186
|
1.55 (1.10-2.17)
|
2.44 (1.59-3.74)
|
<0.0001*
|
|
Cell Phone
|
|
|
|
|
|
|
Yes
|
122
|
868
|
1.00
|
1.00
|
|
|
No
|
16
|
24
|
3.84 (2.28-6.48)
|
1.40 (0.78-2.49)
|
0.2598
|
|
Type of ART regimen
|
|
|
|
|
|
|
Optimal
|
29
|
749
|
1.00
|
1.00
|
|
|
Sub optimal
|
83
|
59
|
26.35 (17.18-40.39)
|
17.83 (11.00-29.00)
|
<0.0001*
|
|
Others
|
26
|
84
|
7.32 (4.31-12.44)
|
6.83 (3.85-12.14)
|
<0.0001*
|
|
Experience of regimen change
|
|
|
|
No
|
106
|
794
|
1.00
|
1.00
|
|
|
Yes
|
28
|
98
|
1.80 (1.19-2.73)
|
1.01 (0.61-1.63)
|
0.8846
|
|
History of ART adherence
|
|
|
|
|
|
Poor/Fair
|
73
|
241
|
1.00
|
1.00
|
|
|
Good
|
62
|
624
|
0.35 (0.25-0.48)
|
0.52 (0.35-0.77)
|
0.0008*
|
|
Duration on ART in months
|
|
|
|
|
|
≤12 months
|
28
|
48
|
1.00
|
1.00
|
|
|
13 - 24 months
|
25
|
67
|
0.52 (0.30-0.89)
|
0.38 (0.19-0.74)
|
0.0042*
|
|
25+ months
|
85
|
777
|
0.17 (0.12-0.26)
|
0.20 (0.11-0.33)
|
<0.0001*
|
|
Approximate distance to health facility
|
|
|
|
<20km
|
74
|
666
|
1.00
|
1.00
|
|
|
20-50km
|
32
|
165
|
1.64 (1.10-2.48)
|
1.20 (0.74-1.99)
|
0.4798
|
|
>50km
|
32
|
49
|
4.99 (3.30-7.57)
|
2.05 (1.10-3.20)
|
0.0285*
|
|
Non-biological caregivers =grandparents, siblings and relatives
3.7 Reasons for poor retention in children and adolescents
Multiple Caregivers
Findings from the integrated content analysis show that nearly all (94.1%) of the key informants at the pediatric treatment centers reported poor retention in children and adolescents associated with multiple caregivers. According to the key informant’s children constantly switch from one caregiver to another and sometimes the transition is done without prior notification at the ART clinic, which makes it difficult for them to trace even when they visit the communities. Below are extracts from some key informants:
“……..the main pressing cause of loss to follow up among children here is the rampant change of caregivers. He/she is no longer with the grandmother, is now with the aunt, the aunt is no longer taking good care of the child and is now with one uncle who may not even be aware of the child’s condition and this shifting from one place to another subsequently leads to LTFU….” (Health facility 1 Male-KI3).
“Many of the children in care do not live with their biological parents as most of them are orphans, they are so unstable and they keep changing from one care giver to another which causes poor retention in so many of them…”. (Health facility 3 Female-KI2).
Long distances/cost of transportation
From this study, finding also showed that some clients have to travel a long distance from home to the health facility with their children or adolescents for clinical appointments or ARV refills. This was evident by many of the responses from the KIs (88.2%) from frequency of the integrated content analysis. According to the responses most parents and guardians complained of living in very far off places and sometimes they don’t have money at all or sufficient amounts to and from the HF and as such they get to miss clinic appointments as reported by some KIs:
“…. most of our clients come from very far off communities and these children need to come to the facility very often, they are not like adults, they need to be followed up but distance is a serious issue affecting retention in this age category. For example, a child or adolescent lives in Baiye-Pania, Mbonge, Baikoke and sometimes transport is about 15000frs - 20000frs and their caregivers cannot afford that often and this has affected retention in them a lot….” (Health facility 2 Female-KI1).
“Many of the children and adolescents here their caregivers are peasant farmers who live in nearby villages, sometimes even to pay say just 3000frs to come to the health facility they are unable and what the clinic re-imburse is not really sufficient to cover very high transport costs or half of that amount and this has affected them coming to the clinic here……..(Health facility 3 Male-KI1).
Sociopolitical crises/displacement
Integrated content analysis shows that 75.5% of the responses as to the reasons for loss to follow up in children and adolescents was linked with sociopolitical crises in the Northwest and South west regions of Cameroon and displacements for educational purposes as a result of school lock-down. According to the key informants there has been frequent confrontations between the military and the separatists and most of the time there is constant blockage of roads. This has made it difficult for these care givers as sometimes they cannot access the health facility with their children to continue their care. Still in the context of this crises KIs say several schools have been shut down and many of these children and adolescents displaced for schooling purposes without any notification at the clinic. In some localities KIs say these children and adolescents have been displaced for safety into bushes and cannot be traced again. With the insecurity some adolescents do not have identification cards and cannot come to the health facilities. Below are examples of quotes from some KIs:
…sometimes when there is serious gun shots, many of them start running into the bushes, you will follow the location plan they gave and when you get there they are in the bushes, you cannot trace them again and with time they are LTFU. Last time our community team went for outreach with files, ARVs to serve them but they came back because they could not trace these children nor the adolescents because they were in the bushes…. (Health facility 2 Female-KI3).
“…. many of the children and adolescents whom we cannot trace back to care have been displaced due to the crises for schooling purposes since schools have been shut down in this area, you even visit the community they will tell you they no longer live here they are schooling at so and so place. Some adolescents do not have ID cards and for fear of the military they don’t come to the health facility……………… (Health facility 4 Male-KI3).
Peer pressure, Refusal, dating and marriage among adolescents
Nearly 3/4 (70.5%) of the KIs from the in-depth interviews said peer pressure, desire to start dating or entering into marriage or co-habiting without letting the other partner know their sero-statuses were reasons for missed appointments among adolescents. KIs also indicated that peer pressure among the adolescents has led to smoking, promiscuity, drinking, gambling, reckless living and stubbornness to parents and guardians which has caused some of them to drop out of care. Below are examples of such quotes from KIs:
“…. many of the adolescents here out of peer pressure have started dating, others drink and smoke and when we reach out to them to remind them of their rendezvous they will tell us that they will not come because they are dating and do not want to be seen in the hospital. Some go into co-habiting and marriage without their parent’s concern. Sometimes you even visit their homes and their parents will tell you they have not seen this one in two weeks, they have not seen this other one for 1 week and subsequently they cannot be traced any more. This peer pressure and promiscuous life style among adolescents is the highest problem that has caused poor retention for us here…” (Health facility 5 Female-KI2).
………. we have a 16 years adolescent who came back here with a whole bag of medications telling us she will not take her medications again, that why is she taking medications when she is not sick…..meanwhile she was already disclosed but she keeps refusing to take, as she said if her mother did not die that means she too will not die and will not take again……(Health facility 4 Female-KI5).
Stigma
Findings from in-depth interviews showed that 64.7% of the respondents cited stigma among adolescents and some caregivers as the reason for poor retention in children and adolescents, especially among adolescents. According to the respondents most adolescents become aware of their status and with age transition they start feeling shy to come to the treatment center as they do not want to be seen. For some children, their parents still feel stigmatized and do not want their child to be seen at the treatment center so frequently so they tend to shy away from treatment as seen below:
“…. stigma is also a serious issue here that has affected retention especially in our adolescents. For example, we have two of our adolescents who will always come into the clinic through this path (nurse pointing to the opposite direction of the main entrance into the treatment center), they don’t come like this (still pointing) they use this downer section, this shows that it is a problem they are still feeling stigmatized. I tried talking with them, even when they come they feel uncomfortable sitting on the cue here in front of the center, and most often they miss several appointments” (Health facility 2 female-KI2).
“.. some children and adolescents live in homes with relatives or relative’s homes with multiple children who are not on ART being stigmatized, they feel shy taking the medication and this has led to poor retention. Also, some caregivers do not want their children to been seen in the hospital or known in the community for taking ARVs which has affected retention as well…. (Health facility 1 female-KI4).
Competitive life activities
Results from the integrated content analysis shows that 58.8% of the respondents indicated loss to follow up among children and adolescents associated with caregivers and adolescents themselves being involved in other activities such as job, business, learning a trade or schooling linked with poor retention in children, as most often they say they do not have time to bring the child to the ART clinic for some time because they were engaged in one activity or another as seen below:
“…with the advent of the crises, Saturday has officially become a school day and most adolescents attend schools and do not come to the clinic especially during examination periods. For some caregivers, they value their businesses more than the health of the child, they are the only bread winners and bend to put food on the table for their children so they prefer to go about their business and not bring the child even for months…..”……(Health facility 4 female-KI4)
“…..many of the adolescents are engaged in other activities that they are doing like schooling, apprenticeship, businesses and most of the time they find it difficult to come to the health facility. so you find them missing their rendez-vous and subsequently they are LTFU. For example some of them are apprentices, and you will hear them say ‘I have gone to work in Bamenda’, they have gone to work in Bafoussam and if its time for medication its not possible for them to come. They will say they are coming and they don’t end up coming for long periods even without salvage…….(Health facility 3 Male-KI1).
Lack of timely disclosure
According to healthcare providers (53%) some caregivers do not disclose their status to their children and adolescents at the appropriate timing and because they do not know why they are taking these ARVs they default because according to them why should they be taking medications when they are feeling well. Below are examples of such quotes:
“…. we still have some adolescent who are 15, 16 years and they do not know why they are on medications, and their care givers are not willing to disclose to them on time, they are like I am very healthy but why am I taking medications some come here to collect medications because they are afraid of their parents and when they go back home they don’t take it. When you ask them to bring their drugs so that you can do a pill count you will see some of them bring back a whole pack back to you and when their parents are not around they don’t come to the health facility at all…….” (Health facility 4 male-KI4).
“……disclosure is not done at appropriate time and some children and adolescents keep asking why they are taking the medication. They only take when their parents are around if the parents are not around especially the adolescents, they do not continue treatment and will become loss since they do not know why they are taking it….” (Health facility 2 female-KI2).
Poverty/Lack of partner/family support
Integrated content analysis from KIs (41.2%) indicated that poverty and lack of family support especially for relatives as care givers and single parents were linked with poor retention in children and adolescents on ART. According to their responses, caregivers and adolescents come to the health facility and complain of no money to buy appropriate diet or food supplements needed for the child. Sometimes the caregivers or adolescents are the ones taking care of the entire family and with poverty and shortages of food, it is difficult to continue in care. Lack of family support, both psychological and financial, was associated with drop out in care. Below are examples of such quotes:
“…. some caregivers say that their families and spouses do not give them the right support to keep bringing these children to the health facility. For example, the mother of a child came here and was complaining that the child’s father doesn’t care about them and most often he is not around and sometimes when she is sick, she pleads with the husband to bring the child to the hospital which he doesn’t…………”(Health facility 1 femaile-K1
“……some caregivers come here complaining of not having enough money to take care of the children especially in cases where the relative has her own biological child and the orphaned child to take care of, we have many cases like that who are just peasant farmers who depend on their farms to take care of these children which is not sufficient to extend for the nutritional needs or maintain this other child in care which has negatively affected retention in them...”(Health facility 5 femaile-K3).
Lack of understanding on the disease process and treatment Close to half of the healthcare workers (47.0%) reported on the poor understanding of the HIV disease process/treatment as the reason for poor retention in care for some children and adolescents. Some KIs said many caregivers especially those living with children who are orphans do not really understand the concept of HIV, disease progression nor the importance of adherence to treatment as some believe treatment has a short duration. This poor understanding causes poor retention in these children as seen in the in-depth interview below:
“……some caregivers feel that since this HIV virus is in children with time it will get better or finish completely. For example, I was talking with a child’s aunti this morning and she was asking me when will this sickness get finish in her niece? So many of them are not informed or are ignorant about the disease and the importance of adherence in children. We do our best to educate them on this but you will educate one caregiver now and in the next couple of months that child has another caregiver who will not know about the disease process nor take the child’s adherence seriously and this affects the child’s retention in care. So when they don’t understand the care and treatment that much, it also affects their retention and good adherence…...” (Health facility 3 female-KI2).
“………some of them started bringing their children for treatment and after a while especially when their children or adolescents themselves feel better they stop taking the treatment. This is ignorant as they will tell you their children are fine now and do not need to continue with their medications….” Health facility 2 Female-KI1)
Alternative forms of health care
Some KIs (29.4%) reported loss to follow up among children and adolescents associated with seeking alternative forms of healthcare such as religious and traditional healers and as such they stop coming to the health facility. Some care givers believe that since their children have been prayed for, they are healed and need no ARVs. According to key informants some caregivers and adolescents visit traditional healers who are told that HIV has a spiritual origin and as such must be treated spirituallyand as such they default from treatment as seen from the in-depth interviews below:
“…….we have parents who do not bring their children to the hospital again because they belief that they have been healed through prayers. For example, there this father we tried reaching him because he was no longer bringing his daughter to the treatment center for 2years now but he told us that his daughter was no longer taking the treatment because she has been healed. We have also had cases in which some parents take herbs and also take their children to these herbal practitioners who claim they can treat the disease………….”(Health facility 1 femaile-K1).
“…some come here after they have gone to one traditionalist for healing as they are told that the disease is caused by spirits and need to be targeted spiritually and some of them don’t bring their children and only come back later when their condition is worsen…………..”(Health facility 5 femaile-K1).
Shortage of ARVs
Four respondents (13.8%) reported shortage of ARVs and inefficacy of the ARVs their children were taking as the main reason why they stopped coming to the health facility with their children and had to go elsewhere where their children could be helped.
This point was further buttressed by some pediatric healthcare staff in the treatment centers:
“……. stock availability is an issue here from July till now, there is stock out of lopirito (lopinavir/ritonavir) which is one of the main drugs for children. we had to start rationing and at one moment it was just TLD and we were giving for two, two weeks for children and adolescents who live closer and sometimes for a maximum of one month for those who live far, which is not easy on them taking into consideration the crises situation here, constant road blocks and their distance. We have to ration so that children don’t stay without medications until we outsource or get regional supply…. (Health facility 4 female-KI5).”