Social demographic characteristics of study participants
Most of the health workers interviewed were female (17/24) and nurses/midwives (15/24). Only four of the health workers were counsellors only (Table ) while the rest of the health workers, mainly nurses and midwives, provided counselling as an additional responsibility.
Characteristics of health workers providing PMTCT services in Mbale District Eastern Uganda
Emerging themes for strengthening the PMTCT programme
The lessons for strengthening the PMTCT programme were grouped under: 1) ensure constant supplies for PMTCT, 2) ensure availability of skilled and up-to-date health workers, 3) provide support for mothers beyond HIV testing, 4) ensure adequate integration and universal rollout of PMTCT services, 5) deal with the challenge of continuing HIV stigma and 6) address heavy work load of health workers (Table ).
Emerging themes and sub-themes in the study
Ensure constant availability of supplies for PMTCT
Health workers stressed the need to ensure constant availability of "critical" supplies for PMTCT. These included HIV testing kits, antiretroviral drugs for mothers and their babies, maama kits (supplies used during birth like gloves, cotton wool, and polythene sheets). Study participants reported that the very supplies that define the PMTCT programme were often out of stock. Health workers spoke passionately about how they and their clients (the mothers) had been let down by the shortages, especially kits for HIV testing and ARVs for prophylaxis for mothers and babies.
I can't say we are doing well. We sometimes lack test kits, Nevirapine for mothers and that for babies. These are the things that make PMTCT. We are even worried that things may get worse because PREFA which has been giving us most of these supplies is closing this month (March 2010). For me, government needs to do everything possible to avail us with at least HIV testing kits and ARVs for mothers and their babies (Health Worker, Mbale Hospital).
The need for increased and sustained provision of HIV test kits and antiretroviral drugs for PMTCT was more prominent among health workers at lower level health facilities, as noted.
Like now we do not have nevirapine. If we get a mother who needs it we can only refer her to Budaka HC IV. If they also do not have it they will refer her to Mbale Hospital and this makes the process very costly for women and their families. Transport by boda boda (motorcycle) to Budaka costs 2 500 Uganda shillings (about 1.4 USD) if the mother has the money she goes. The truth is that most women cannot afford that money. ....these are the things government should address if they want the PMTCT programme to work (Health worker, Health Centre A).
Most of the health workers felt frustrated for being criticized by their supervisors, community leaders, pregnant women and their families for the shortfalls in service delivery most of which were beyond their control.
We need government and donors to listen and understand us. We have practical health care needs which frustrate us. Like when we are few health workers, or we do not have nevirapine to give the mothers and their babies what do you do in such cases? The bad thing is that community leaders and every one else expect good services without giving us the needed tools to work (Health worker, Mbale Hospital)
Shortages, especially of HIV testing kits, also constitute missed opportunities to increase male partner HIV testing and involvement in the PMTCT programme.
We encourage women to come with their partners to test, but there are times when some men come and by bad luck we have no HIV test kits. It frustrates me, because it is really very hard to convince men to come with their wives for antenatal and when we miss them because of shortages it takes us a step behind....( Health worker, Health Centre C).
Whereas health workers at TASO were not directly affected by shortages of nevirapine and HIV test kits, they were also concerned that the shortages of supplies at health facilities was a major shortcoming in the PMTCT programme, as a health worker observed.
At TASO, we counsel and encourage pregnant women in our programme to give birth at the nearby health facilities. But many women, even those who go to health centres for delivery, call us or come here for ARVs for their babies when those drugs are not in hospital. The lack of PMTCT drugs puts an extra burden on these mothers (Health worker, TASO).
Interviews with key informants also confirmed the need to strengthen the supply of HIV test kits and ARVs for the PMTCT programme, as one district official observed.
As a district we have extended PMTCT services, especially HIV testing, to all health centre IIIs. What we need to work on now is to ensure that the supplies for PMTCT are sustained at those health facilities. Shortage of testing kits and nevirapine are common complaints whenever we have PMTCT review meetings. We need a special fund designated for HIV activities rather than relying on donors all the time. Donor projects usually leave gaps when they end which the district cannot fill (District official).
Health workers expressed a need to provide maama kits, which is a package of basic necessities for use during delivery. These include gloves, polythene sheets, cotton wool, baby sheets, razor blade, threads for tying the umbilical cord etc. The Ministry of Health decided to supply maama kits free of charge through the National Medical Stores. At the time of the study, these kits were out of stock and pregnant women at study health facilities were being told to buy maama kits which costs about 8 000-10 000 Uganda shillings (about 4-5 USD) on the open market. Most health workers believed this was a barrier for HIV positive women to deliver at health facilities and access ARVs for their babies since many cannot afford this price.
We do not have enough gloves, cotton wool and other supplies, so we tell mothers to buy them. We do not like it because we know some of the women cannot afford, but we have to do it .... These supplies should be part of the PMTCT programme (Health worker Mbale Hospital).
I think the things we tell mothers to buy discourage them from delivering in hospital yet for the PMTCT programme we need every HIV positive mother to have supervised delivery to reduce chances of HIV transmission. It would be a good addition to the PMTCT package for Government and donors to supply at least some elements of the maama kit like gloves, polythene sheets and cotton wool ..... (Health Worker, Health Centre D)
Health workers from TASO concurred with the need to add maama kits to the PMTCT package as an aspect that would increase the effectiveness of the programme as one health worker noted:
At TASO we know that most of the HIV positive women are poor and cannot afford to pay for transport to a health facility for delivery, buy drugs and even maama kits. Some mothers in our programme whom we assess and find they cannot afford we give them some of the requirements, like gloves; Government should provide maama kits to all pregnant women including those who are HIV positive (Health worker, TASO Mbale).
Indeed, attempts by health workers to build partnerships with their clients to provide the missing supplies were evident during health education talks and the day-to-day running of antenatal clinics as indicated in the explanation by Maria (not real name) a midwife at Mbale Regional Referral Hospital during one of the health education talks,
Thank you for coming........... One of the things you need to know when you are pregnant is to be prepared for the baby. So you should buy Maama kit which has gloves, at least 2 pairs, two pieces of plastic sheets about 2 metres each, razor blade, cotton wool and remember sheets for the baby etc. If you cannot buy every thing at once buy one item at a time so that by the time you come to give birth you have these requirements. Things have changed, how do you expect us (health workers) to assist you to give birth without gloves? Would you be willing to give birth on a bed which another woman has used without covering it? That is why we want you to buy polythene sheets. I know it is hard for you but it is hard for us health workers as well (Health worker, Mbale Hospital).
Some health workers narrated their experiences indicating that despite continuous reminders for women to buy maama kits, some still came for delivery without such kits, largely because they could not afford them.
Ensure availability of skilled and up-to-date health workers
The need for continuous skills development and up-dating of health workers' knowledge on PMTCT emerged as one of the key areas for strengthening the programme. Most health workers interviewed (21/24) had ever attended training on PMTCT and had been involved in PMTCT activities for 2-5 years (15/24) (Table ).
However, all health workers in this study expressed the need for more training on PMTCT to update their knowledge and skills given the rapid changes on issues of HIV at global and national levels. The common areas identified for further training were: use of ARVs for babies, ARVs for mothers during and after pregnancy, infant feeding, HIV testing for infants, options to help HIV positive couples to deliver HIV negative children and issues related to discordant couples. The use of CD4 results to decide whether to start a mother on ARVs, disclosure of HIV and other developments like new guidelines and discoveries in areas of HIV prevention, care and support were other training needs expressed by health workers. In view of training needs, health workers noted;
Most health workers have been trained on PMTCT but things are changing very fast. We need regular updates otherwise we shall be challenged by mothers and communities. Some of the issues in PMTCT can be addressed in brief seminars at health units but for major changes, like introduction of new drugs for PMTCT, formal training of health workers is required... (Health worker, Mbale Hospital)
A few health workers had never attended any formal training on PMTCT but had learnt about PMTCT through personal reading and sharing with colleagues at work. These expressed strong need for training, especially covering the use of ARVs for PMTCT which many health workers, especially those from health centres, were not sure of, or were confused about, as indicated in the following quote.
The issue of drugs still puzzles me. I am sure, I am not alone. We received Combivir last week to give pregnant mothers but I am not sure when I should give it to the mother. We have not been trained on use of these drugs (Health worker, Health Centre C)
Another major concern was the need for clarity on infant feeding options for HIV positive mothers.
Issues of infant feeding should also be addressed in health worker training. Some documents indicate that HIV positive women should continue breast feeding for 6 months while others indicate that breastfeeding for a long time increases the risk of HIV transmission for the baby. What should we tell the HIV positive mothers?. We need more training and reference materials (Health worker, Health Centre C).
Findings from key informants also confirmed the need for continuous training of health workers on issues of PMTCT as one district official observed.
There is more emphasis these days on couple counselling, family planning for HIV positive mothers, use of ARVs during pregnancy and breastfeeding, and the training sessions most health workers attended did not cover these topics. Health workers, often in support supervision visits and PMTCT meetings, have raised this need. We need to conduct district wide refresher training for health workers. The problem we have is that PMTCT guidelines keep changing and we need to re-train health workers time and again but resources are not always readily available to reach all health workers (District official).
Provide support for mothers beyond HIV testing
There was a common feeling among health workers on the need for more support and active follow-up for mothers in the PMTCT programme, especially at government health facilities. Study participants observed that HIV positive mothers require follow-up with supportive counselling to address fears about HIV positive diagnosis, disclosure of HIV status and guidance on infant feeding. Unfortunately, most of the public health facilities in the study area lacked funds for transport and lunch allowance for staff to conduct these follow-up activities. Some health facilities, like the Mbale Hospital in the past, had psychosocial support groups for HIV positive mothers. These groups, however, stopped with the end of a project that was providing funding. In view of this, health workers explained:
The actual areas for support among women become vivid after women have tested HIV positive but most of the education and counselling in practice focuses on the period before testing. This needs to change so that we (health workers) are provided an opportunity to meet regularly with these women, guide them on disclosure of HIV status, infant feeding... When we had support groups, mothers would meet and share their concerns and advise each other. This was very helpful. Improving the PMTCT programme should have more programmes reaching out to women than what it is now, where we wait for the women to come to us (Health worker, Mbale Hospital).
Interviews with health workers at TASO revealed that the PMTCT programme should have a strong link between health facilities and communities so as to meet the needs of HIV positive women and those of their families.
If health facilities can have, for example, support groups we can link them to our community volunteers and expert clients who can support and encourage women who have just tested HIV positive through use of testimonies (Key informant, TASO Mbale).
District officials also observed that whereas the community support interventions for people living with HIV are required, very few donors are willing to fund them.
The challenge we get these days, very few programmes are willing to support community interventions. Every new programe that comes wants to finance health facility based activities yet we need to reach the people where they live and that is where most of the things that hinder PMTCT are located. (District Official)
Another area for support that was emphasized by study participants relates to reaching communities for male partners to take an active role in the PMTCT programme. In view of this, a district official noted:
One of the major challenges that we need to address in strengthening the PMTCT programme is to reach men, educate them, encourage them to test and be part of the programme. This may not be easy but we need to reach them...Men hold the key to success or failure of the programme (District Official).
Health workers emphasized that the PMTCT programme should facilitate them to conduct face to face meetings with communities to educate men and women on the need for men to attend antenatal care with their wives. Interviews with TASO staff revealed that, indeed, men should be, and can be, part of the PMTCT programme.
TASO has tried to use HIV positive men to reach out to men. Each of the 11 TASO centres has a Positive mens' union (POMU). These are HIV positive men who have come to terms with their diagnosis; they educate communities through radio programmes and music, dance and drama, with messages targeting men (Key informant, TASO).
District officials linked some of the gaps with short term projects that support PMTCT programmes.
The challenge we have as a district in the PMTCT programme is the short nature of projects of our partners. Central and local governments need to come up with long term plans and budgets for HIV programmes so that the partners can contribute towards those plans (District Official)
Government is not doing enough. There should be a conditional grant by Government for HIV. Donor driven programmes leave out some programmes, for example PREFA left out psycho-social support programmes yet they were very helpful (District official).
Ensure adequate integration and universal rollout of PMTCT services
The major sub-themes that emerged under this were: the need to support lower level health centres to provide maternity services and provide ARVs for women in the PMTCT programme. A common concern mentioned by health workers was the need to support the health centre IIIs around Mbale Hospital, to provide maternity services. Health workers revealed that PMTCT services at most health units were limited to HIV counselling, testing, antenatal care and referring women to Mbale Hospital for delivery. As a result, some women preferred to go directly to Mbale Hospital for antenatal care which increased the work load for health workers. At the time of the study, the hospital management had decided that women should attend antenatal care from health centres near them and only go to Mbale Hospital for delivery. Women who came to Mbale Hospital for ANC were being referred back to nearby health centres. The lack of maternity services at health centres was a source of frustration for both mothers and the attending health workers.
Our mothers get tossed around. They go to Mbale Hospital and they are sent back this way. Yet here we do not conduct deliveries. Some mothers get lost along the way. We should be able to provide all services. (Health Worker, Health Centre B).
Dealing with the challenge of continuing HIV stigma
Another area for improvement mentioned by health workers was the need to address the challenge of continuing HIV stigma. Health workers at lower health centres mentioned that they referred HIV positive women for ARVs to TASO, Mbale Hospital and the Joint Clinical Research Centre (JCRC). Referral of mothers to other HIV care centres made follow-up of mothers and their babies difficult. In addition, most women, especially those who had newly tested HIV positive, were reluctant to go to HIV care centres for fear of stigma.
We need to provide all the care for preventing HIV transmission to babies and treatment of mothers under the same roof. So that those who fear to go to TASO they are treated by the same health facility, where they are tested and counselled (District Official).
When we refer HIV positive women to TASO for ARVs most do not like it. One woman told us she will not go to TASO, even if it means her dying, she will die. Her main fear was that once she goes to TASO the news about her HIV status will reach her husband whom she feared will mistreat her. (Health worker Health Centre B).
Address heavy work load of health workers
The need for adequate number and right mix of health workers as well as adequate working space emerged as other areas for strengthening the PMTCT programme.
It is good you have been here with us; you have seen the numbers of women we see and the number of health workers. On average we see 40 new mothers who need HIV counselling and testing and about 20-30 antenatal re-attendees per day. Even the space and time are not enough for us to attend to each mother and give them the best. (Health worker, Mbale Hospital).
...The same health worker is expected to counsel, test, examine the mothers, and fill many registers. It is too much, even a very good health worker cannot offer his/her best in this environment (Health Worker, Health Centre B).
Heavy work load was identified as a barrier to utilization of PMTCT guidelines by health workers, as they explained:
We are always too busy. You cannot get time to read the guidelines. By the time the day ends you are very exhausted (Health worker, Mbale Hospital).
We need simplified and summarized messages like posters for quick reference. (Health worker Health Centre D).
Discussions with key informants also revealed that indeed the work load of health workers involved in the PMTCT programme at some health facilities was high and more health workers were required for quality provision of health services.