Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study

Participants and samples characteristics

The qualitative study has been conducted from 7th to 14th July 2010. Table 1 shows the characteristics of the 96 participants recruited to the qualitative design
study.

Table 1. Characteristics of study participants in the qualitative study

About the quantitative study conducted from 1st August to 8th October 2010, a total
of 862 patients, including 309 (35.8 %) TB patients and 553 (64.2 %) PLWHA participated
in this study. 52.0 % were from Hauts–Bassins region and 48.0 % from Centre region. There was no difference statistics between both Centre and Hauts–Bassins settings; even the Hauts–Bassins region is more rural than the Centre region. In brief, the mean age of the PLWHAs was 36.5 ± 10.6 years old, and 57.1 %
were female gender (see Table 2 for more details).

Table 2. Socio-demographic variables, association member status and cost of diagnosis and treatment
by patient profile

Triangulation of results from both quantitative and qualitative study

For reactions facing to disease diagnosis, perception of the disease and experiences
lived with the relatives of the patient and his community about the disease, patients
from both quantitative and qualitative study perceived as grave diseases and faced
stigma, perceived bad attitude towards TB/HIV and were discriminated against or isolated.
Related to gender, women were exposed to social and financial problems. HIV groups
participated in education and sensitization sessions related to activities from associations-NGOs
than TB patients. For both TB and HIV patients, treatment emerged as key challenge
for patients. Related to their needs and perspectives, PLWHA were more expressed than
TB patients and support can be encouragement, advice, psychosocial support, food,
health education, and home visits, was really helpful. All patients still hoped to
receive support primarily in the form of medicines and supplemental nutrition.

Reactions to disease diagnosis, perception of the disease

All patients were shocked hearing about having TB or HIV. TB and HIV, locally called
“white cough” and “spider”, are still perceived as grave diseases. At the announcement of their status, all
patients felt bad and associated the diagnosis to a death sentence. Moreover, they
expressed fear because they thought about the interpretation of the disease in the
community: “having TB means you may have HIV, and vice versa”. Indeed, 30.6 % of TB and PLWHA patients from the total sample size feared
that other persons would know their disease status, especially about TB patients (37.5 %)
as shown in Table 4. TB and PLWHA patients faced stigma, perceived bad attitude towards TB/HIV and were
discriminated or isolated (Table 4). For TB and PLWHA patients in focus group, some symptoms such as losing weight,
fatigue and fever were perceived to indicate the existence of one of both TB and HIV
infections. Some people with TB and HIV infections had misconceptions of the way in
which they can transmitted the disease, for example, by simple contact, or from eating
from the same plate or utensils. The gravity of the HIV infection is greater expressed
by PLWHA patients who seek care with healers, as confirmed by 21.3 % of PLWHA patients
(Table 2); because they think that medical facilities do not have solution for them.

Experiences lived with the relatives of the patient and his community about the disease

Across all focus groups, TB patients and PLWHA felt that their friends and relatives
distanced themselves after learning their status. They still perceived stigmatization
and some (more related to PLWHA) lost their home and job because of their status.
Indeed, about 93 (10.8 %) patients had to change their housing after contracting their
illness. Indeed, up to 12.7 % of PLWHA patients pointed out this fact (Table 3). There was a proportional difference between patient groups (p = 0.018). Unfortunately,
131(14.7 %) patients revealed that they had lost their job following their disease
diagnosis (Table 3); there was no proportion difference between patient groups (p = 0.484). Up to 683
(79.2 %) of TB and PLWHA hid their disease status from others (Table 3); among the 683 TB patients and PLWHA who revealed their status, 19.5 % informed
their partners, 32.5 % informed family members, 15.4 % informed health workers, and
23.7 % informed a staff of the association. Furthermore, 668 (77.5 %) patients felt
that the relatives and friends talked about them when they were not present (Table 3). At least 124 (14.4 %) patients said that they stayed away from people in order
to avoid rejection (Table 3); There was proportion difference between patient groups (p  0.001). Some patients
recognized that not all people behaved this way, as revealed by focus groups. To avoid
being discovered as TB patients, some of the TB patients, mainly from rural setting,
preferred to go outside their community for treatment because under DOTS, they will
be identified as TB patients by the daily appointments at the health centers. Indeed
737 (85.5 %) patients agreed that they were bothered by others because they are TB
patients or PLWHA; and 58.2 % of PLWHA patients (were more concerned by this issue
(Table 4). There was proportion difference between patient groups (p  0.001).

Table 3. Description of the variables related to psycho-social and behavioral variables by
patient profile

Table 4. Comparison of psycho-social and behavioral aspects between TB and HIV patients

Although all patients reported that they received information on how to avoid transmitting
the disease to others; only 703 (81.6 %) patients were afraid of spreading the disease
to others (Table 4). Indeed, up to 483 (56.0 %) patients never used condoms (Table 4). In addition, 480 (55.7 %) patients never asked their partners to use condoms during
sexual intercourse (Table 3). And, all patients had on average, more than one sexual partner.

Aspects related to gender

Participants reported stereotypical gender roles and still perceived stigmatization
but less discrimination. Related to gender aspects, women remained financially dependent
on their husbands and were subsequently exposed to social and financial problems when
having TB or HIV infection. Women said they were abandoned by their husbands. Worse,
they were more marginalized when their husbands were suspected of having died of HIV.
Widowed women with HIV, even those abandoned by their husbands, faced emotional and
economic burdens of the entire family. They had to take care of children and household,
and some times of the husband when he was sick (from TB or HIV infection). Men generally
hid their status from their wives. Moreover, women complained that when they were
infected by TB or HIV, their husbands did not take care of them. Rather, husbands
could be remarried when they were not sick.

From the quantitative data, TB patients and PLWHA perceived isolation by their community
(45.5 %) and from their family (53.2 %), as showed in Table 4; in addition, patient isolation was identified as an important issue for women (38.1 %),
but less so for men. The issue of isolation was more emphasized by PLWHA in community,
in family and related to female gender.

Sharing of the disease status and behavior patient-others-patient

TB patients rarely shared their status or talked to other TB patients. Indeed as TB
patients said, there were less associations-NGOS for them, and less education and
sensitization sessions to give them opportunity to share their disease status and
to learn from other TB patients. It was more common to hear from HIV groups that they
participated in education and sensitization sessions related to activities from associations-NGOs.

In the perspective of sharing TB or HIV disease experience with others patients, about
440 (52.1 %) patients said they would do it (Table 3).

Observance of the treatment and costs of diagnosis and treatment

Across the discussions, treatment emerged as key challenge for TB patient. Even if
the treatment is free of charge, there is other problems: the long length of the treatment,
the daily geographical access to health center, the quantity and the size of the medicines,
the injections for those under retreatment, the need to not take breakfast before
taking medicines, side effects of medicines, and the need to eat well 1 h after treatment.
For PLWHA, they got aid from associations-NGOs for the treatment and some medical
and biological examinations.

Patients were interviewed about the reasons why patients would stop receiving the
treatment. Reasons were: considering that patient was cured even if the treatment
was not finished (48.7 %); stigmatization by entourage (46.3 %); having a problem
of transportation (38.5 %); difficulty of going daily to the treatment center (44.7 %);
financial problems (24.6 %). Other reasons (29.1 %) were: physical weakness of the
patient and needing help to go to health center, raining period/season, long distance
and remote health area, beliefs, insufficient information and ignorance, travel, forgetting,
too much pills to swallow, unwillingness to go to the health center.

About the costs of diagnosis and treatment, the data from quantitative study showed
that 56.6 % of TB patients think it is free of charge whilst that is not at all free
for PLWHA (Table 2). Indeed 95.1 % of PLWHA said that the costs were expensive (Table 2).

Patient needs and perspectives

All patients indicated that at the announcement of their results, they were very concerned
about the future but, they were strongly encouraged by health workers (especially
for TB patients) and counselors from associations-NGOs (for PLWHA); they improved
their mood or outlook.

Related to social support and perspectives, only 2.7 % of the patients were health
insurance members (Table 2). 36.3 % of the patients were association’ members since they know their disease
status (Table 2); that was more the case for PLWHA (52.4 %) and fewer for TB patients (7.4 %).

About the question “Do you think you need to receive support from others?”, 350 (40.6 %) of TB patients and PLWHA needed it (Table 3). About the question “From whom do you receive support?”, TB patients pointed out the support from relatives and family members (51.9 %)
and government through health facilities (67.6 %). PLWHA received support from association
or NGOs (51.3 %) and relatives and family members (51.9 %). The support from the patient’s
workplace was very low (4.9 %).

During the focus group discussions, PLWHA expressed that support from associations-NGOs,
such as encouragement, advice, psychosocial support, food, health education, and home
visits, was really helpful.

PLWHA and TB patients stated that they feel hope for the future and have some ongoing
projects. This positive outlook was based on the hope in research and the present
medical therapy, particularly because the situation in the past was worse for PLWHA.
All patients still hoped to receive support primarily in the form of medicines and
supplemental nutrition.