Qualitative results
Qualitative results were organized into barriers, motivators and recommendations in the main levels of influence. Regional differences are included in the results, but no contrasting findings were found by child HIV infection status. Table
3 summarizes the various barriers, motivators, and recommendations identified by study participants.
Table 3
Summary of barriers, motivators and recommendations about accessing HIV prevention and care for children
Individual*
| • Seeking alternative care for illness | • Health facility is the appropriate place to receive care | • Provide more information and awareness in the community about HIV |
• Disbelief in HIV test results (mom and/or infant) | • Hope for future of the child |
• Lack of motivation to attend facility care | • Having symptoms (visible illness) |
• Fatalistic beliefs about HIV/AIDS |
Interpersonal
| • Lack of social support from partners and family | • Family being supportive regarding HIV care | • No specific recommendations were given by the participants on this level
|
• Fear of disclosure to partners | • Family decision-maker in favor of care at the health facility |
• Generation conflict (Southern region) |
Institutional
| • Long waiting times for services (patient flow) | • No specific motivators were mentioned by the participants on this level
| • Improvements to patient flow |
• Distance to health facility | • Organizing outreach clinics and home-based care for HIV counseling, testing, and follow-up |
• Including messages of hope in education to the community |
• Money for transport to health facility |
Community
| • Lack of social support from community | • Social support from community members | • Support by community members (for example home visits, awareness session given by members) |
• Fear of disclosure to those in the community | • Support by community in referring to health facilities (for example active referral by leaders) |
• Community support groups with refreshments provided |
• Financial incentives for counselors of the support groups |
Policy
| Non-integrated services | • Services free of charge | • Integrate nutritional support services with HIV services |
1.Individual-level factors
In all groups and provinces, participants frequently reported seeking alternative care before attending services at health facilities. Alternative care was explained by respondents as delaying, interfering, or replacing HIV testing, care and treatment from a health facility. Respondents explained that some diseases have spiritual causes that cannot be treated in health facilities and should be dealt with using traditional rituals before medical personnel can address the physical ailment.
…“So, in relation to AIDS; what they do is to push away the bad spirits so that the person becomes clean, and then send him to the doctor so he can see him because if my organism (body) is not pure (from bad spirits), and I go to the doctor first, he will simply say that I am seronegative, because he cannot see because the bad spirits from our grandparents are locked up…” [Focus Group Discussion, Community leader, South]
Some caregivers recruited from health facilities in the northern and southern provinces who acknowledged that they seek alternative care for them or their children, said that they do so if their health does not improve through facility-based care.
“I have gone to traditional healers as well, but I start coming here at the hospital and if there is no improvement I take him (the child) to the traditional healer, but if their things are also not good, I end up staying hopeless at home.” [Focus Group Discussion, Caregiver at facility, North]
Caregivers’ disbelief in their own, their partners’ or child’s positive HIV test result, or being asymptomatic was associated with non-acceptance of an HIV diagnosis, resulting in not seeking HIV care, particularly in Maputo Province and City. All groups mentioned their distrust of HIV testing technologies as an impediment to seeking services for themselves and their children.
“I believe in the test result of my child but not mine. If I am HIV positive, why haven’t I started treatment yet?” [Individual Interview, Caregiver in Community, South]
Participants from the southern study sites report the lack of courage to face reality about their positive test result as a barrier to care. Other barriers included lack of caregiver motivation and interest to seek chronic care for the child. Some respondents believe that HIV is a fatal disease and thus do not feel the need to seek care for the children, as they believe the child will die anyway.
All groups from all provinces mention that having a visible illness or wanting to know about the health status of their children was one of the most important motivators to accessing care at health facilities.
“..I am coming back because the child is not well, the body is warming up a lot and he is not eating well” [Individual interview, Caregiver in community, South]
Mainly caregivers, both recruited at health facilities and in communities, reported that seeing people living with HIV who receive facility-based care with improved health and longevity gave caregivers hope for their infected or exposed children.
“..what I want for my child is that he is healthy; just as they took care of me until I am as I am now, I also want that my child has a future.” [Focus Group Discussion, Caregiver at facility, South]
Some participants, particularly caregivers recruited from health facilities and community leaders, felt that facilities were the most appropriate place for HIV care. In some cases, traditional healers act as motivators by referring their patients to health facilities.
2.Interpersonal-level factors
The presence of family support, for example helping to remind the main caregiver about follow-up visits, was discussed as facilitating access to HIV testing, care and treatment. Not having any emotional or social support hindered access. Fear of disclosure within the family as a barrier to engaging in HIV services was mentioned most frequently in the three southern study sites. Caregivers who took their children to health facilities risk inadvertent disclosure of their children’s status or their own, which may result in abandonment by women’s partners or other negative implications.
“…now she hides maybe because if the husband finds out he can send her away, because if he is diagnosed from you as woman, this is heavy. The disease is easier to handle with her when it starts hitting the husband as nobody will talk. But if by coincidence the disease comes to you as woman, these are big problems and you will have to take your stuff and go back to your parents’ home, so this is what scares women…” [Focus Group Discussion, Community Leader, South]
Caregivers reported that when they do not have sufficient social support, they tend to abandon care at health facilities. Decisions makers in the family are highly influential providers of social support. In Mozambique these are predominantly the male head of the household who tends to be the father of the child, or the grandmother (in the north this is the mother of the mother and in the south this is the mother of the father) in the absence of the man. Grandmothers, HCW and caregivers from communities said that caregivers are often obliged to follow instructions given by traditional healers for fear of being abandoned by their partners who oppose and mistrust conventional medicine. In the southern study sites, grandmothers described relationship conflict with their daughters-in-law as a barrier to seek care for children at the health facility. They explained that their in-laws did not discuss their HIV status and their need for care and preferred to avoid health facilities, which hinders grandmothers’ ability to provide support.
Respondents from all groups and all provinces said that when the caregivers felt supported by their family, they were more willing to seek HIV care at health facilities. All groups except caregivers recruited at facilities reported that in cases where the decision-maker in the family was in favor of getting care at the health facility, caregivers were more open to and likely to visit the health facility for care.
3.Institutional-level factors
Participants discussed service delivery at health facilities as playing a vital role in caregivers’ health-seeking behavior. Factors that were associated with reduced retention in care and treatment at facilities included long waiting times, often due to an insufficient number of providers, a separate process for drug pick-ups at the pharmacy that identifies patients as HIV-positive, and the need for multiple clinic visits often over a long duration of time to receive test results and care. These barriers were mentioned by all groups in all provinces.
“… They did blood tests of the child and said the blood will be taken to Pemba… three months passed, we always asked and they said the result has not returned yet… the fourth time they told me that my child does not have the disease, only that I have to go to the doctor; I went but I was told that the doctor does not work today and I should come back on Monday… I came back, but they did not work and they told me to come the next Monday. I came on Monday. They said to come back the next Monday…and I gave up to going to the hospital …” [Individual Interview, Caregiver at facility, North]
Transportation was also mentioned as a barrier with long distances to the facility as a problem in the north and lack of money to pay for transport in the south. Caregivers recruited from the community from all provinces, but especially from the southern province, reported to not have time to go to health facilities. In general, very few motivators were mentioned.
4.Community-level factors
Lack of social support from community members (external to children’s families) such as neighbors, influential people in the community, and fear of disclosure beyond the family were the main barriers to accessing care. Psychosocial support mainly through community-based support groups was mentioned frequently in all provinces to be a motivator to seek HIV care. The important role of the community in making referrals to health facilities was highlighted. HCW pointed out that treatment services could be more effective if carried out through support group meetings, but additional incentives, such as refreshments during the group meeting and financial incentives for the counselors, are needed for groups to remain active.
“What happens in the community when we know that child x is sick, we usually support the parents and go and counsel them to get the child to the hospital and try to cure the disease; and we, women, go to visit them, specifically women from the “OMM” (Mozambique Women’s Organization) to see how the person is doing, if he/she goes to the hospital and takes the medication.. but mainly we incentivize them to go to the hospital. The thing of making fun of people doesn’t happen anymore. This is what we do in our community.” [Focus Group Discussion, Grandmothers, South]
5.Policy-level factors
The principal barrier at this level was related to the decentralization of pediatric HIV services in Maputo City, as part of the national policy. In this 2009 policy change, patients who previously attended the specialized pediatric clinic at Maputo Central Hospital were transferred to lower-level health units. The fact that services were no longer in a specialized clinic was seen as a barrier to seek care in the decentralized facilities. The provision of free services in the national health services was reported as an important motivator.
“our patients for example were used to be attended very quickly, now that they go to the others (meaning peripheral health facilities), there, they do not feel very good… and it takes a long time to be attended; others end up giving up because of those delays.. do you see?” [Individual Interview, Health Care Worker, Maputo City]
6.Participant recommendations
At the institutional level, participants offered different suggestions for improving health service delivery, with regional variations. In the southern province, participants recommended increasing the number of staff at health facilities to avoid the long waiting times that discouraged people from going for consultation. Other recommendations included facility-level improvements to patient flow in order to reduce long queues and the integration of HIV services in maternal and child health care. To improve access, recommendations included organizing outreach clinics and home-based care for HIV counseling, testing, and follow-up for HIV-exposed or infected children. Respondents appealed for better coordination between health facilities and communities. According to participants, information and communication materials concerning HIV should include more messages of hope for those infected.
“What could be improved mainly in the messages is that in principle it should be said that this disease has no cure, no cure, no cure, but it turns out that many people who take treatment are healthy and happy. Then they should disclose enough information that says let us go and do the treatment so that we can be healthy, and organize our lives. The message should be unique and not messages like, if you have this disease you will not live, you will not live, while there are people that are living with this disease.” [Individual interview, Community leader, South]
At the policy level, from respondents in Maputo City, recommendations were related to the 2009 policy change for the decentralization of ART services. Caregivers felt that adherence would be improved by reinstituting specialized clinics. Nutritional support, especially for those with infants beginning complementary feeding, is seen as a method to improve adherence to HIV services, and was mentioned frequently in all regions.
“…we all appeal that they (the ministry) let the children be taken care of here (in the reference center), well, we – who are adults can be transferred, but it is not worth to do with children; in the health facilities there is no good service and the children will die…” [Focus Group Discussion, Caregivers at Health Facility, Maputo City]