Understanding factors influencing linkage to HIV care in a rural setting, Mbeya, Tanzania: qualitative findings of a mixed methods study – BMC Public Health

Study sites and characteristics of respondents

A total of 38 males and 60 females above 18 years participated in qualitative interviews, with two respondents participating in both IDI and FGD.

Factors identified as influencing linkage to care

Themes related to factors influencing linkage to care were categorized into four levels based on the conceptual framework used in the study: individual, health care provider, health system and contextual levels. Table 2 below illustrates the various categories into which the emerging themes and factors were classified. We present the identified factors affecting implementation at various levels first, reporting facilitators and then barriers, and then we report the most frequently mentioned factors from focus group discussions, individual patient interviews and individual health care provider interviews.

Table 2 Facilitators and barriers to linkage in care by levels

Full size table

Results overview

While we identified both barriers and facilitators at all levels and reported by all respondents, we found that individual-level and health system-level factors reported by both People living with HIV (PLHIV) and healthcare providers were particularly prominent. With regard to the individual-level factors, most of the HIV positive individuals mentioned stigma as an important barrier. During the FGDs and IDIs with the PLHIV, the participants kept steering the discussions toward stigma related issues. With regard to the health system factors, both the PLHIV and the healthcare providers emphasized over-crowding and long waiting times at the centers.

We also noticed that in discussing the health system level in one of the sites, while the PLHIV mentioned that there were occasional medication stock-outs, the healthcare providers did not agree that this happens.

Individual level

The individual level includes issues related to the individual’s knowledge, attitudes, feelings, experiences and behaviors towards linkage to care or accessing health care services.

Facilitators to linkage to care

Three themes were identified as facilitators to linkage to care at the individual level: being sick or having symptoms at the time of diagnosis, disclosing one’s status to someone and social and moral support from relatives and from other PLHIV:

Individuals being sick at the time of diagnosis

The individual’s perception of their health status, and specifically being sick at or around the time of diagnosis, was reported (by PLHIV) to influence linkage to care positively. This is illustrated in the following excerpts:

“Initially, I didn’t think it was necessary to go [to the hospital] but one day I had a fever. I felt my hands and legs not working at all. I thought I am going to die. I asked my sister to take me to the hospital for medication” [IDI-Client3].

“They stay at home until they are seriously sick is when they go to the hospital for registration” [FGD7].

Individuals disclosing their status to someone

Respondents cited disclosure of seropositive status as an important factor in facilitating linkage to HIV care in HIV-positive individuals. For example, one participant reported:

“Most of my relatives know my status after since I told them. They support me. Sometimes they escort me to the clinic” [IDI-Client3].

Social and moral support from family members/relatives and from other PLHIV

Social and moral support from family and relatives were reported to enhance linkage behaviors of HIV-positive individuals in a number of the focus groups and individual interviews:

“I started suffering so I decided to ask my elder brother to escort me to do the test [HIV] and I was found HIV positive” [FGD3].

“My sister encouraged me, she said it not the end of the world, I will be okay when I start medication, and there are so many people who are in this [HIV] situation” [IDI-Client8].

“At our place Lusungo, we have formed the HIV support group which we meet every 15 of the month to discuss issues and encourage each other… we contribute little money for emergency …like if someone does not have transport fare we give” [FGD2].

Individual level barriers to linkage to care

Six themes were salient as barriers to linkage to care from this sub-theme: fear of stigma, denial and being asymptomatic at the time of diagnosis, lack of understanding of the importance of being in care, lack of disclosure, belief in witchcraft and traditional treatment and spiritual beliefs.

Fear of stigma

Stigma related to attending HIV care clinics or CTCs was the most frequent factor described by the PLHIV and health care providers as a barrier to being registered (linked) into HIV care and treatment. This was captured in statements such as the following:

“They do not like going to the hospital; some fear that other people will see them at the clinic and know that they are infected” [FGD1].

“Most of them is because they fear that people will see them at CTC and start pointing fingers” [IDI-HCP2].

Denial and being asymptomatic

Denial of test results was reported as a prominent barrier to linkage to care among individuals who had tested positive for HIV:

“I was pregnant and I went to the clinic for antenatal care. They [clinicians] tested my blood and told that I am infected with HIV. I did not believe it because I was not sick and had no other health problem apart from being pregnant” [IDI-Client9].

“Some clients do not believe they are infected because they are healthy” [IDI-HCP7].

Poor health literacy (lack of understanding of the importance of being in care)

Poor health literacy in the form of lack of understanding of the importance of being in care was a hindrance to linkage to care. The issue of poor health literacy was mostly reported by the health care providers. The patients did not particularly allude to issues related to poor health literacy. Two examples are shown by the following quotes:

“Maybe education is still low, they do not understand that is importance to start ART care while you are still strong than when you are very weak” [IDI-HCP9]

“Also some people are just ignorant especially those who do not have any symptoms, they do not see the importance of being in care if they are not sick.” [IDI-HCP5].

Lack or fear of disclosure

Both PLHIV and the health care providers identified the lack or fear of disclosure as an important barrier to linkage to care. Participants revealed that HIV positive individuals sometimes fail to disclose their HIV status to their significant others for fear of consequences such as intimate partner violence and divorce. This is captured in the following statements:

“Many women are facing problems when disclosing HIV status to the men and some lead to divorce” [FGD3].

“They do not tell their partners, so it becomes difficult for them to come to the clinic and they come secretively” [IDI-HCP13].

Belief in witchcraft and traditional treatment

The reports of some of the HIV-positive individuals suggest that belief in witchcraft is a challenge to linkage to care among some HIV-positive individuals in rural areas. These individuals believed that they are sick due to witch craft (someone has bewitched them) so treatment at the hospital was not an option for them to get better. These experiences were mostly shared by the PLHIV

“When I started getting sick, my in-law took me to a traditional healer, he said I am bewitched. He [traditional healer] started treating me with different herbs, some for drinking and others for bathing. I wasn’t getting any better so I told him; I want to go to the hospital” [FGD 2].

“He [traditional healer] said it was one of my neighbors in the market who is jealous of me. He [the neighbor] had put something in my store that is causing us to suffer from unknown diseases” [IDI-Client 2].

Spiritual belief

It was also reported by some PLHIV as well as by some health care providers that certain spiritual beliefs sometimes had a negative impact on linkage to care Respondents reported that some people believed that prayers and usage of holy water can heal HIV, thus influencing their decision to link to HIV care. This was captured in most focus group discussions with the patients, and some of the key informant interviews with the health care providers support this point of view:

“You know when there is a problem you become worried so you can come here [clinic] or try other places. They say they pray for you and you will be healed” [FGD 4].

“Some patients go to the new churches. The pastors in those churches they pray for them and give them holy water to take and they tell them you will be healed” [IDI-HCP 3].

Health care provider level

These are factors related to the relationship between the care providers and the PLHIV as well as to the behaviors of the health care providers. The facilitators and barriers under this level were reported by the PLHIV in the focus group discussion and individual interviews. Health care providers placed less emphasis on this level, particularly in relation to barriers.

Health care provider facilitators to linkage to care

Two themes were identified as facilitators for linkage to care under this theme: Support or encouragement from health care providers and good patient/staff relationship.

Support or encouragement from health care providers

There were similar testimonies from both PLHIV and health care providers espousing that support and encouragement from care providers facilitated the registration (linkage) of HIV-positive individuals in the CTC. The role of support and encouragement is captured in these excerpts:

“Frankly speaking, the health providers here treat us nicely. They explained to me step-by-step on how to use drugs. I thank them. It is two weeks now since I started the drugs. They are providing good services” [FGD3].

“They [the nurses] even gave me the drugs for preventing chest infection and another disease.” [IDI-Client6].

Good patient-health care provider relationship

A patient who took part in the focus group discussions indicates that a good relationship and service delivery from the health care providers could encourage patients to link to care. A good relationship between the health care provider and the patient was reported to enhance linkage and continuity in HIV care as reported in some focus group discussions:

“The nurses are very polite and helping us a lot” [FGD1].

“Generally the service providers are treating us well; we do not have any complaint” [FGD4].

Health care provider barriers to linkage to care

Negative healthcare provider attitude and use of abusive language were reported by the HIV positive individuals, particularly in one FGD and one IDI. On a follow up visit, a healthcare provider in the site in question claimed that this is related to a shortage of staff at the site: sometimes staff are overwhelmed by responsibilities and work overload, so the patients feel neglected.

Poor health care provider attitude and use of abusive language

Some participants reported that negative healthcare provider attitudes and the use of disrespectful language and shouting by some of the health care providers was an important barrier to linkage to care. It was also reported that patients dropped out of care when mistreated at the clinic. Participants in two of the focus group discussions expressed this in the following statements:

“When we reach here [clinic], they look at us like we are not normal human beings, they discriminate against us. They tell us to come very early but you see they start attending to us at 01:00 in the afternoon and sometimes you end up not getting the drugs” [FGD2].

“Truly, shouting can contribute so much, it hurts. You think I am sick then doctor barks or shouts at me, so they decide to stop coming” [FGD6].

Health system level

Factors related to the health systems and to HIV care program implementation in the facility may include the organization of the health care services, leadership, resource availability (including human resources) and access to health promoting services like home based care or HIV support groups at clinics.

Health system facilitators for linkage to care

Two themes were identified as facilitators to linkage to care under this theme: availability of referral procedures i.e. provision of a referral letter/referral form, and the existence of a well-organized clinic system with HIV testing service and HIV care services (a “one stop shop”), as well as possibilities of same day registration.

Availability of referral procedures

Most of the reports attesting to the availability of referral process were provided by the healthcare providers. Some of the PLHIV narratives support the reports of the healthcare providers. Providing a referral letter/form to enable the registration process of individuals at the CTCs was reported to facilitate linkage to HIV care and treatment. The referral letter is an important document given to the HIV positive individuals to confirm their seropositive status and facilitate registration into a CTC. The role of the referral letter in the care linkage process is captured in these statements below:

“If the client is positive, I refer him/her to CTC with this form (referral form) we have to make sure they are registered in the book” [IDI-HCP1].

“We refer the client we give him/her a referral letter with CD4 results print out and we also do HIV staging so that the CTC clinician can decide on how to continue” [IDI-HCP7].

It was also revealed that in some of the sites the peer health educator escorted the newly diagnosed individual to the clinic.

“I sometimes take the letter from here (Testing site) and I accompany the person to the clinic at the [District] hospital, I take them through all steps” [FGD 1].

Service design or clinic services organization

Both the healthcare providers and the PLHIV agreed that the availability of HIV testing, CD4 counts and HIV care and treatment services within the same facility, organized to provide a complementary service, enabled linkage to care. This provides the possibility for individuals who test positive to be registered, thus linked to care at the CTC on the same day.

“Normally when I find a positive client, I go to the next room where we keep the documents for registration and the CTC cards, so I register him/her in the CTC register and give them a CTC clinic number with the treatment card” [IDI-HCP1].

“He [the care provider] gave me the letter and asked me to go to room number 10, show this [registration card] to the nurse. They gave me a card then I went into another room to give blood for CD4” [FGD 2].

Health system barriers to linkage to care

Five themes were identified as barriers to linkage to care within the health system umbrella. These include poorly organized clinic procedures and visits schedules, clinic overcrowding, long waiting times at the clinic, inadequate resources including CTCs, and shortage of staff.

Disorganized clinic procedures and visit schedules

While it was reported by the PLHIV that healthcare facilities that can provide integrated services of testing and treatment/care facilitated linkage to care, narratives from both PLHIV and healthcare providers indicate that the services might not be available on the same day. Some of the healthcare facilities had a schedule of when testing takes place and when registration for treatment and care occurred. This required patients to make multiple visits to the facility. For example, an individual testing on Friday morning will be given a referral letter to come the next Tuesday for registration, and then they will be told to come on Wednesday or Friday for CD4 testing and then given another appointment to get their CD4 results.

“We do CD4 testing on Wednesdays and Fridays, the other days is for in-patients’ tests. So if it is Wednesday and the client comes early, they go directly to the CD4 testing section and they are given a date to come for results normally. This could be in about three or four days’ time” [IDI-HCP10].

“He gave me some papers (referral form) to go with and show the nurse at the CTC. I went and the nurse said I should come on Tuesday for registration” [IDI-Client2].

Clinic overcrowding

Reports from both patients and healthcare providers indicated that clinic overcrowding could constitute a barrier to linkage to care. When patients found a huge crowd of people when they arrived at the clinic, they were tempted to return home as explained by a healthcare provider. This could lead to the patient failing to link to care timeously. The discussions among the PLHIV in a focus group supported this perspective.

“So even when you tell a client to go and join the queue for registration, he says ‘there are too many people, I will come tomorrow’ and that is it. They disappear. We don’t know whether they go to other clinics or what happens to them” [IDI-HCP9].

“For the matter of staying a long time it is because we are so many, therefore, we take a lot of time” [FGD1].

Long waiting times at the clinic

This was among the frequently mentioned barriers by both PLHIV and healthcare providers. Overcrowding in the CTCs and low numbers of healthcare providers were seen as leading to long waiting times for patients and hence a potential barrier to linkage to care.

“Patients wait for services for a very long time because the same staff has to go in the wards to assist, and then come here again for HIV client. For example, on Wednesday when they come for adherence treatment classes we can only start with them after 12 noon, and they always complain” [IDI-HCP6].

“We wait for services for a very long time and the waiting place is open when it is raining, we suffer a lot” [IDI-Client1].

Inadequate resources and equipment

Shortage of resources such as HIV care centres, staff and CD4 testing machines were identified as possible barriers to linkage in care. Statements from both healthcare providers and HIV-positive individuals suggest how this resource shortage could interfere with linkage of HIV-positive individuals into HIV care.

“There is a severe shortage of staff here; clients wait for CTC services for hours before they are attended to. We are only two nurses and one doctor per shift if one of them is sick or on leave, patients wait up to 4 o’clock in the evening” [IDI-HCP6].

“The problem is, we depend on only this hospital for all people in Chunya, people from Lupa tingatinga and all other villages…and Chunya is big” [FGD4].

In one district, the recurrent breakdown of the CD4 machine was mention as a serious concern:

“Also, the recurrent problem is with the CD4 machine [breakdown]. Maybe the government can help us by buying a new machine, even two we are so many here who need the service” [IDI-Client1].

“Most of the patients there are delayed due to CD4. This is the only site with a working CD4 machine. We receive patients from Sumbawanga even Nakonde from Zambia because this service is not available in their areas” [IDI-HCP14].

Contextual level

Contextual factors refer to matters associated with access to, and affordability of, ART treatment and care services, and may also include social and cultural factors beyond individual beliefs concerning HIV infection. Depending on how far the individual lives from the clinic, the themes identified under this category could be either a facilitating factor or a barrier. Those who live close to the clinic did not identify access to the clinic facility as a possible barrier to linkage to care. Conversely, those who live further from care facility saw distance and transport cost to the facility as a potential challenge to linkage to care.

Contextual facilitators of linkage to care

Proximity and low travel cost to the clinic

Proximity and hence lower transport costs to the clinic was reported by the PLHIV to facilitate linkage to care.

“I do not live very far from here, I just get a boda-boda [hired motorbike] and I pay only one thousand [less than half a dollar] and I can even walk if I want to” [IDI-Client6].

“For me, distance is not a problem, I walk for about ten minutes and am here, sometimes I send my daughter to bring the card for me and put it in the box while am still at home, when I come here I just wait for my turn to take medication” [FGD7].

Contextual barriers to linkage to care

Long distance and high transport cost to CTCs (transport challenges)

Long distance to the clinic and the high cost of transport was reported by the participants (especially in two districts, Chunya and Mbozi), thus is identified as a deterring factor to linkage to HIV care and treatment. This is what some of the PLHIV and the care providers said:

“We refer our clients to either … hospital [about 10-15 Km] to… the health center also about same distance. They say ‘I do not have bus fare for now” [IDI-HCP11].

“Transport is very costly. Sometimes, I borrow money from friends and sometimes I come with my bicycle but I do not have the energy to ride for a long distance” [IDI-Client2].

“Binti-manyanga is far, it is about 100 kilometers from here and the cost of transport is very high about 28000 to 30000 [about $14] per trip” [FGD4].