Characteristics of included participants
Seventeen women, (nine engaged and eight disengaged) participated in the study. More than a half of them (59%) were 25 years and above, while about a half (53%) were engaged in care at the time of the interviews. Among the engaged women, only two received their ART from the original health facility of initiation while the rest had transferred to other facilities. Detailed socio demographic data of participants are indicated in Table 1.
Table 1
Socio demographic characteristics of participants (n = 17)
Participants ID
|
Status of care
|
Current treatment facility
|
Age range
|
P1
|
In care
|
Same as enrolment
|
25 and above
|
P2
|
In care
|
Different from enrolment
|
25 and above
|
P3
|
Not in care
|
NA
|
25 and above
|
P4
|
Not in care
|
NA
|
25 and above
|
P5
|
In Care
|
Different from enrolment
|
25 and above
|
P6
|
Not in Care
|
NA
|
18–24
|
P7
|
In care
|
Different from enrolment
|
25 and above
|
P8
|
Not in Care
|
NA
|
25 and above
|
P9
|
In care
|
Different from enrolment
|
18–24
|
P10
|
Not in Care
|
NA
|
18–24
|
P11
|
Not in Care
|
NA
|
18–24
|
P12
|
In care
|
Different from enrolment
|
25 and above
|
P13
|
In care
|
Different from enrolment
|
18–24
|
P14
|
In care
|
Same as enrolment
|
25 and above
|
P15
|
Not in Care
|
NA
|
25 and above
|
P16
|
Not in Care
|
NA
|
18–24
|
P17
|
In Care
|
Different from enrolment
|
18–24
|
Main study findings
The study aimed to establish the barriers and facilitators for reengagement in care among previously traced women on option B+, and how these factors could have been impacted by the COVID-19 pandemic. The findings are presented under two main themes and several sub-themes, and in consideration of how the COVID-19 situation has contributed to the various themes.
Barriers to reengagement and retention in care
Women reported various barriers that affected their reengagement and retention in care, including adherence to HIV medications. These barriers were found to fall under three categories, including; structural, clinical and psychosocial barriers.
Structural barriers
Structural barriers generally refer to the physical, organisational and operational factors that had a negative influence on the ability of women to seek and access healthcare facilities for their treatments [7]. Factors such as transport difficulties (either because facilities are not available or are expensive), and leaving far from care facilities were key barriers for accessing care:
The major problem now is the distance. The health facility is in Kawanda and yet I no longer stay that side. The other time I was staying in Kawempe which was near and I would some time walk but now it’s hard for me. (P8- not in care)
The COVID-19 pandemic was generally reported to affect women’s access to care by relocations to far settings and reduced income through loss of their jobs or that of their care providers such as partners. Additionally, movements were generally affected by the COVID-19 response measures such as restriction of public and private transport which further affected women’s access to care:
It (COVID-19) affected me so much most especially at the beginning when public transport had just been stopped because I was left with few drugs. It became worse even when the Boda-bodas (motorcycle riders) were stopped from moving. (P13-in care)
Transport has really disturbed me so much, even someone who would have given me some money cannot because all they say ‘’ I’m no longer working.’’ (P9-in care)
Clinical barriers
Clinical barriers generally refer to how the clinical care environment affected access to HIV care and treatment. Clinical barriers were key in women’s choices of a particular healthcare facility and sometimes resulted in drop out from care or relocation from one facility to another. Women in particular reported the negative reactions/treatments from healthcare staff as a major demotivation for their access to care in specific care facilities:
Unfriendliness of the health care staff as from my previous facility where I was getting treatment from, the medical personnel were backstabbing and really unfriendly to me. This affected me because I could no longer go for my treatment. (P1-in care)
Other important clinical barriers included being delayed at facilities, facilities with less privacy which appeared to undermine the women’s confidentiality, and facilities which did not offer comprehensive care, but only provided ART or provided medication for shorter periods of time. A specific challenge reported to affect adherence to medication was the fear or actual experience of medication side effects. A woman who reported never initiating her treatment blamed it on the fear of side effects disclosed to her during a healthcare talk of ART initiation:
The side effects of the drugs that the medical personnel told me were so scaring like dreaming about the snakes, feeling dizzy and fatigued and she said they would persist for over one month. Since I had issues disturbing, I imagined what would have happened after combining the two things. (P6-not in care)
The COVID-19 pandemic was reported to further contribute to the clinical barriers. For example, some women reported that the fear of contracting the Corona virus demotivated them from going to collect their medications, especially as government directives had strictly recommended social distancing as a mitigation measure:
Some of us feared to go to the health facilities because we thought there were COVID-19 patients who would infect us. Also when they are health educating at the facilities, over the radios and TVs, they tell us it’s easy for people living with HIV to contract the covid-19 and they are much affected thus discouraging people to go for care. (P12-in care)
Some women also reported perceived fear of effects of medications taken on an empty stomach due to lack of food. One woman who was previously adhering to medication reported how loss of work due to COVID-19 failed her to buy food which affected her adherence to the medications:
I was working in a Jewellery shop but it was closed ever since COVID-19 started and they haven’t called me back so I’m now planning to get another job. The situation has not been the same because I even tried to take my medication on an empty stomach but I almost died. (P13-in care)
Psychosocial barriers
Psychosocial barriers are those associated with how psychological and social factors affected women’s motivation and ability to access HIV care and/or adhere to HIV medications. These factors were largely associated with the fear of HIV stigma which affected disclosure of women’s HIV status:
At the facility, there are other medical personnel coming from villages, one from every village local council (LC) and they are the ones responsible for giving out drugs to the patients and yet they are our family friends so I dare can’t go there. As long as I decide to go there, they will tell everyone. (P4-not in care)
A number of women reported experiencing negative reactions such as mistreatment and marginalisation from those to whom they disclosed their HIV positive status. Such women regretted taking the decision to disclose while others, for fear of such negative effects refused to disclose. Lack of disclosure was reported to affect seeking care or adherence to medications:
Let me tell you the truth, to go for medication I just escape from home because I don’t want to tear my family into pieces. (P4-not in care)
I used to take my drugs in hiding and I never used to keep it at home but when I disclosed to him, I started taking it freely. (P13-in care)
The COVID-19 response measures such as lockdown made couples to stay in the same environment longer (e.g. they could no longer go to work) which affected women’s adherence to medication for fear of revealing their HIV status. This was a major problem for women who had not disclosed to their partners:
At first I was affected by those measures because my husband was not working but later he went back to work. […] I was not free at home because my husband was always around. […] I used to take it (the medications) from my friend’s place. (P16-not in Care)
Perceptions of being healthy was also a significant barrier for some women to remain in HIV care. Some felt that HIV treatment was necessary when one had significant health challenges and therefore would be willing to take the medications if/when their health conditions deteriorated. “I cannot even take the medication while I’m still healthy […] Yes, I’m very fine and healthy so there is no need of taking the medication.” (P15-not in care)
Facilitators of re-engagement and retention in care
Our study established various factors that facilitated women to reengage and be retained in care and also adhere to their HIV medications. The main facilitators included receiving support from people, having accessible services, a favourable healthcare facility, health benefits and having disclosed one’s HIV status.
Supportive structures
The support received from various entities such as family members, peers and healthcare workers was essential in enabling women to reengage and remain in care. Participants reported receiving various types of support, including psychosocial and financial/material support. Psychosocial support motivated women to overcome the fear of HIV stigma, while financial support was mainly helpful for facilitating access to care facilities and purchase of food staffs which was an important factor in adherence to medication.
People who have supported me so much are part of my family. My appointment dates are sometimes due when I don’t have transport however my sister has always given me a hand. My mother has been there for me so much. (P7-in care)
HIV status disclosure emerged as a key factor in receiving support from various people including spouses. Psychosocial support was highly recommended as a measure to encourage women to initiate and remain in care. A community-based approach involving peers was considered appropriate.
They should do more health education through drama, health education talks through media like over the radios and TVs and they should also give counsellors enough transport to reach more patients because they know them better and patients feel free with them. (P12-in care)
Accessible services
It was reported that having services that are accessible, for example through receiving treatments from nearby facilities or having services brought to their communities would facilitate women to remain receiving their HIV treatments. The need for easy access to services was influenced by other factors such as fear of HIV stigma, financial/transport difficulties and domestic responsibilities.
I now want to get a facility which is near home and I can go there for a few minutes while I have left the baby at home but this business of boarding three taxis from the village to Masanafu, then Bwaise to Kawanda, no, it’s disturbing. (P8-not in care)
The COVID-19 pandemic which affected the movement and income of women further raised a need for community-based services.
According to this situation of Corona disease and which I believe will not end soon, the organisations should establish the number of patients on a certain village and support with delivery of drugs to individuals. They can also take the medication to the village women representatives and they let us know and we pick it from her and we stop moving for long distances because the majority of us do not have transport. (P7-in care)
Conducive healthcare facility
Factors associated with healthcare facilities were important in enabling women to remain in care. These included timely services, being attended to privately to avoid disclosure of their HIV status and availability of treatments for various health problems. In addition, caring facility staff who provided psychosocial support and made women feel accepted emerged as an important reason for women to prefer a particular care facility to another.
The medical workers care for the patients and do not mistreat them but in my former facility while I was still pregnant, I was abused by a medical worker who made me annoyed and I decided to join this current facility. (P17-in care)
During the COVID-19 pandemic, some women reported receiving special support from healthcare workers where their treatments were delivered to their homes, a measure they applauded for facilitating their continuity in care despite the numerous challenges imposed by the pandemic.
First of all, when I fail to make it to the health facility for my medication, I can ask my counsellor and she brings it for me. Some people don’t have transport during this period (of COVID-19) but for us we were told in case we don’t have transport, we can give1000 shillings to the counsellor and she brings it to us which transport is cheaper compared to the 3000 we always use. (P9-in care)
Health benefits
Women reported that the desire to be healthy and to have HIV uninfected children highly motivated them to keep in care and adhere to medications. For some, seeing very ill HIV patients was a wakeup call to be serious with their treatments despite other challenges faced.
The state of my health is very important, I already know I’m HIV positive, I need to encourage myself to go to the health facility and pick my drugs because once I do not pick them, my life can be affected, therefore I need to support my life. (P7-in care)
The most important thing (for remaining in care) is my child and also keeping myself healthy. (P9-in care)
HIV status disclosure
Disclosure of HIV status contributed to women’s continued access to care and adherence to medications. Women reported that disclosure of their HIV status to various people removed fear of being stigmatised, hence they were able to seek care and take their medications openly. In addition, disclosure of their HIV status resulted into being supported by those who became aware of their condition, which further motivated their engagement in care.
I haven’t faced any challenge (since I disclosed) but instead she always calls me to remind me about my appointment dates and I’m very happy for having told her about it. (P17-in care)
Women reported disclosing to people they considered trusted and likely to be supportive such as their family and friends, and preferred personal to supported disclosure. However, those who found personal disclosure difficult advocated for assisted disclosure.
…unless if I’m to bring him to you and you help me to disclose to him but personally I can’t because I fear him. (P11-not in care)