We successfully interviewed 19 of the 30 LTFU clients and all the targeted 30 health care workers. For the 11 missing clients 5 did not grant consent and 6 could not be traced. Reasons for the missing clients included: relocation, misidentification and failure to grant consent.
Table 1 summarizes the characteristics of the LFTU women and the health care workers who were interviewed. The women had median age of 36 years and age range of 21-42 years. The majority were married (73%), had attained primary school education (68%) and survived on subsistence farming (63%). The health care workers had a median age of 37 years and an age range of 25-57 years. The average duration of working at a health facility was 7.4 years. The majority of the health care workers were male (53%), married (80%), and were nurses by profession (33%).
Reasons for LTFU
Several factors were identified as potential reasons for loss-to-follow up, based on the perspectives of the women and health care workers. They were categorized into personal, family, community and health system factors.
Poor understanding of the indication and purpose of ART
Three clients reported after taking the drugs they felt well enough hence they decided to stop taking the drugs, as narrated by one client, below:
“…I started taking treatment. After I had taken enough of it, I felt that my body became well. So now I stopped taking the treatment; I am just staying. (Lungwena_client_1).
Consistent with this finding, health care workers reported that most of the women come for antenatal care as healthy and fit women. As such, many women may be initiated on treatment but they end up as LTFU since they do not feel to be sick. In addition, health care workers reported that some women felt the ART was only to protect the child. Therefore, once their child test negative for HIV at 9-12 months, they stopped taking medications despite counselling about the risk of infection during breast feeding, as explained below by one HCW:
“.……but most drop out after one year when you tell them that their child seems to be negative then they say ‘What’s the point of going to the hospital?’, even if you insist on counselling them to continue coming to the hospital.” (Malukula_HCW2)
Three LTFU women reported that they stopped ART and disengaged from HIV care due to various side-effects which they attributed to ART such as heart burns and vomiting, as narrated below by one woman:
“At that time, I received, but as soon as I took it, I awfully vomited. I would also fall sick so seriously. At some point, I stopped; I was not coming due to the same problem. (Katema_client_1)
One client was influenced to stop treatment and health facility attendances because of the belief that ART caused insanity, as reported below:
“……..when I was taking the treatment at other times, I was having nightmares that were telling me that I should stop taking the treatment. Because they said that if I continue with the treatment I will go mad. ‘Stop it’, that’s what they told me” (Malukula_client_3).
Four women reported interrupted or completely stopped taking of drugs due to lack of food as consequences of poverty as illustrated in the quote below:
“……the problem (that led to stoppage) is that I lack food due to lack of money, because for a person to eat anything it’s money…. (Mchoka Client 2)
Health care workers corroborated this notion by affirming that ART needs to be complimented with good nutrition, as narrated below.
“…we tell the women that when they are receiving these drugs they are supposed to eat adequately and you find that other women do not come they say ‘I don’t see the reason for coming to the hospital because even if I take the drugs I cannot use them since I am not eating adequately’…” (Mafco HCW1)
Lack of marriage partner support
Most respondents (eleven) reported that their husbands stopped them from taking ART and this was corroborated by health care workers. The lack of support in this case ranged from merely refusing to support them financially to physical violence and divorce as evidenced by the quotes below:
“When I went home and told my husband, my husband did not accept.... I just came [to the hospital] and said just give me the drugs I should take them and when I saw that things are becoming difficult [at home] I just stopped [taking ART]. There were quarrels …… and I was being troubled and lacked peace... my husband was shouting at me as to why I went to the hospital and got tested…. all I faced was ill-treatment……” (Nankumba_client_3).
In one instance, the husband stopped the wife from continuing medication because of the belief that ART causes insanity as show below:
“……’These things are the ones that are making people be insane here in Malawi. And our heads are not functioning properly. They are made from Indian Hemp so worthy throwing into the pit latrine’. Then he picked all of them and threw into pit latrine. So, I also just stayed”. (Maganga_client_3)
In another instance, a woman reported that she stopped taking treatment and continuing health facility attendance due to her husband’s lack of adherence to pieces of advice provided at the health facility.
“……..I felt like I was wasting the drugs. Because I took drugs and he slept [has sex] with me every day without using a condom. I felt like I was wasting the drugs since the instructions from the doctors were not being followed,……….” (Mchoka_client_5)
Stigma from family members
Both health care workers and LTFU women (four) reported stigma from relatives as one of the factors that led to LTFU. Some relatives failed to provide physical, moral, and psychological support; others were on the forefront spreading the HIV status to third parties. Fearing stigmatization some women opted not to tell their family members about their HIV status, as stated by one of the women, below:
“Yes, because my relatives do not keep secrets that’s why I just told my one sister who I registered here as my next of kin…….it’s only two of us; my sister and I who know... But other relatives like my parents, my brothers… don’t know it” (Katema_client_1)
Stigma from community
The problem of stigma extended from the family to the community level. HIV-positive mothers and their children are spoken ill of and are seen as laughing stocks by other members of the community. To avoid stigmatization, other women opted to attend distant ART clinics, some lied about their destination as shown below:
“When they ask me ‘Where are you going?’ I just say ‘aaa I am going just up there, I have a relative at Nankumba and I am going to chat there’. I lie to others that I am going for some other things,…” (Nankumba_client_1).
Health care workers corroborated these findings, as shown in the quote below:
“The community lacks proper counselling, once they hear that the woman is on drugs they start gossiping, speaking ill, laughing at her and making jokes about her and her child. So, this affects them and makes them to stop going to the hospital to get drugs” (Malukula_HCW2)
Apart from stigmatization from the general communities, two LTFU women reported to be discriminated by community leaders as reported by one woman below:
“.. some of the problems are that when things come (relief items), they don’t include us so that we benefit. We are discriminated people….” (Mchoka Client 2)
Health care workers corroborated these findings, as narrated below:
“Yes, some activities like piece works, public works programmes, they say: ‘Don’t employ the infected, leave them, they can’t work’. The villagers are a big setback. They contribute towards stigma against them” (Katema_HCW1)
Alternative treatment options
Two LTFU reported to have sought alternative care from religious and traditional healers and stopped receiving treatment at the HIV clinic, as narrated below.
“…I stopped for several months because I have spirits which make me do work of prayers. So, when I take treatment, I don’t find peace but only Bactrim brings me peace.” (Maganga Client 2)
In addition, health care workers reported instances where women opted to go for traditional healers and stop treatment as shown by the instance below:
“….. Two if not three months ago there was a guy who told people to stop taking ARV drugs. Instead, they should be taking his drugs he brought from south Africa. Each patient was advised to drink up to five litres of his drug”.. (Life_line_HCW2)
Health System Factors
Distance to health facilities
Seven women reported long distance to health facilities as a contributing factor to LTFU. Most of the women had to walk on foot with babies on their back for many hours to reach health facilities. Other women needed to hire bicycle taxis that charge fare ranging from MK500 to MK2000 (approximately US$0.66 to US$2.65) one way. As narrated below, a woman stopped attending HIV clinics because she could not afford transport to attend clinics.
“I stopped because of transport….as I explained where I am staying is not my real home, so here they receive treatment on Friday…… so it’s hard for me to leave every month to come here to receive treatment….” Malukula Client 2
Health care workers echoed same problem highlighting how most of the health centres serve large catchment areas. Hence, long distance combined with lack of support from husbands and transport expenses lead to women dropping out of care.
“…….and others stop because of long distance some have to travel 27 kilometres just to come and collect medicine”……… (Katema_hcw2)
Poor attitude of the health care workers
Two women reported that they were shouted at by health care workers after missing appointments due to other reasons. Hence, they decided to stop attending clinics, as shown below:
“…., he [health worker] started shouting at me that I have stopped coming here up to the extent of saying he will send me home because of this issue ……” (Phirilongwe_client 1)
Some health care workers admitted to having shown poor attitude to clients, manifested by shouting and providing poor instructions to clients. The health care workers attributed this poor attitude to high workload:
“Sometimes even our attitude can affect our clients as well. If you ask some of our clients, they might tell you that ‘I can’t go there because the health workers have a bad attitude’ but all in all we let them know that we are here to help them…….” (Monkey bay HCW2)
Other infrequently reported reasons by the LTFU women were forgetting clinic appointments and long waiting times at facilities; by the health care workers were frequent relocation of the women and their families and intermittent shortage of staff at the health facilities.
The following factors were not reported as causes of LTFU: shortage of drugs as well as infant testing supplies and inadvertent disclosure of HIV status by health workers.