Misconceptions and lack of knowledge about the PMTCT guidelines
The findings section emphasizes the prime study findings; namely the many challenges experienced in receiving sufficient information about the continuously changing HIV and infant feeding guidelines. The regional informants were aware of the entire period of HIV and infant feeding guidelines, including the relatively recent 2010 guidelines, so the interviews with this category covered the entire period the PMTCT programme had operated in Tanzania. With the district and health facility informants, the period from 2005 was discussed as this was when the PMTCT programme was introduced in Mbarali. Before presenting the challenges of communication experienced, we will briefly discuss the understanding of the infant feeding policies that we encountered among the study participants.
Despite there being an understanding of the major policy changes in the PMTCT infant feeding recommendations during the past decade, we found serious gaps of knowledge at every administrative level included in the study. Knowledge gaps, for example, included the serious misunderstanding that the 2000 WHO guidelines promoted replacement feeding only, i.e., the informants were not aware that the policy at this time presented an option of breastfeeding if replacement feeding was not considered to be feasible. This misunderstanding was found as high as at the regional level. The changes that were introduced in the 2003–2007 policy were thus perceived as a move from an ‘authoritative’ (providing no choice) to a more ‘friendly’ approach providing HIV-infected mothers with alternatives – alternatives that had, in reality, been in the PMTCT guidelines all along.
A fundamental lack of awareness of the scientific explanations behind the many policies was a theme that ran throughout the material. For example, the scientific basis behind abrupt vs. gradual weaning, or behind the recommendations of first allowing for and later removing the possibility of using animal milk as replacement product. Serious misunderstandings were moreover encountered: “Research evidence has revealed that abrupt cessation or early cessation increases the risks of HIV transmission to the babies” (IDI-regional informant).
Vital policy changes were not widely known among the informants. For example, few informants knew that the 2007 Tanzania guidelines opened up for HIV-infected mothers to continue breastfeeding after six months, and to introduce complementary foods until they could wean their infants safely. When asked about the most recent recommendations, most of the informants answered six months of exclusive breastfeeding with abrupt cessation, a policy that had long since been replaced in Tanzania. Importantly however, all the study participants expressed a strong belief in exclusive breastfeeding being linked to the observation of HIV free babies born by HIV infected mothers.
Top down communication challenges
Informants were asked about the ways in which changes on infant feeding guidelines had been or were presently communicated. At the regional level, stakeholders were informed by national managers through workshops and meetings, whereas at the district and health facility levels healthcare providers were informed by regional managers through training. Training sessions had, for example, been provided on testing and counselling, on how to administer ARVs as well as on how to advise mothers on best feeding practices, how to prepare replacement milk and on how to ensure early infant diagnosis. In both IDIs and FGDs at health facility level, this training was said to be characterized with a top-down approach, and care providers did not feel they were given sufficient opportunity to question or comment upon the recommendations.
The challenges encountered in communicating the continual modifications were increased by confusion over how to deliver messages that in themselves were difficult to grasp.
Communicating a complex public health message: “. . . there is a likelihood that they will forget”
The enormous challenge of trying to communicate a public health message that was perceived to be not feasible in the local context ran through the discussion. The district and health facility informants particularly emphasised the difficulties in delivering the message about formula feeding to the HIV-infected mothers. Most of the mothers were from rural areas with limited education and very low incomes. Thus, the care providers in both FGDs and IDIs explained that it was difficult for these mothers to meet the standards required for replacement feeding:
“The information about the preparation of replacement feeding is difficult for mothers to understand… This might be taken by policy-makers as a challenge, and alternative ways should be sought rather than (merely promoting) issues of heating mother’s milk” (IDI-district informant).
After the substantial difficulties faced in delivering the messages on replacement feeding, regional informants found the 2011 recommendations that allowed for an extended breastfeeding period reassuring;
“We cannot teach care providers to tell mothers to rely on replacement milk. It is difficult because the criteria required for replacement feeding are difficult for rural women to understand; there is a likelihood that they will forget when they are required to adhere to all of them” (IDI-regional informant).
Communicating a constantly changing message: “. . . that is where the confusion started”
The frequent changes in the infant feeding guidelines were said to confuse the PMTCT managers. It was perceived to be challenging to deliver new messages in a comprehensible and trustworthy manner to lower level care providers, who in turn would have to present the information to the HIV-infected mothers. All managers at regional level complained about this issue.
“In 2000, we were entrusted with advising HIV-infected mothers not to breastfeed as the risks of transmitting infection were high. Later on we received training, and that is where the confusion started, because we were asked to advise HIV-infected mothers to breastfeed rather than rely on supplementary milk” (IDI- regional informant).
A regional informant was also frustrated about the changes, fearing for his reputation:
“At one time you tell them ‘don’t allow mothers to breastfeed’, another time you come and insist strongly ’you should advise mothers to breastfeed’. Care providers might consider you confused” (IDI- regional informant).
Another regional informant revealed similar frustration regarding the changing messages, this time relating to the acceptance of vs the banning of animal milk:
“These changes have brought about confusion, because in previous training we taught health workers that animal milk is recommended as it is affordable by the majority of the women, in contrast to formula milk. Now the new guidelines have banned the use of animal milk, and we are supposed to train healthcare providers. . . We don’t know how we are going to make it clear” (IDI-regional informant).
Lacking reasons behind the health message: “. . . I haven’t heard of any reasons behind that”
The tendency of not providing reasons or sufficient explanation for policy changes within the PMTCT programme was reported to be common in the communication surrounding the guidelines. The study informants expressed that being provided with the reasons behind the various policy shifts would have facilitated important clarifications during the training, and would have eased the education of the mothers:
“Different guidelines are produced based on the research evidence. But we managers have never seen a person from the Ministry of Health telling us that the guidelines have changed because of 1, 2, 3, etc”. (IDI-regional informant).
Another explained:
“We have been told that animal milk is no longer recommended. I haven’t heard of any reasons behind that. . . We were just told that ‘from now on children below six months of age should not feed on animal milk. It was just a single sentence on the slide in the power point presentation” (IDI-regional informant).
Lack of explanation of the reasons for changes was found to contribute to superficial and confusing health messages:
“For example there are messages like. . . ‘You (speaking to a mother) just squeeze your breast milk, put it in a pan, and then heat it and all viruses will die’. Messages like this one will definitely confuse the mothers” (IDI-district informant).
Such statements were seen to be far too shallow to allow for a proper comprehension of the particular behavioural change called for (although such message was not recommended in the Tanzanian guidelines).
A limited number of health workers in each health facility, usually only one of higher rank, was trained on the many and constantly changing guidelines. As a result, the lower cadres found it difficult to understand the rationale behind the changes as they were only briefly oriented onsite, causing mistakes of various kinds:
“You know very few staff received training. . . For example there was an HIV infected woman who was to give birth when I was out of the office; I instructed the nurse assistant on duty to provide the medicines to the mother and the child. She didn’t do so because she didn’t understand why the mother should also get medicines” (IDI, health facility informant).
Guidelines clouded by English academic jargon: “. . . they are more for academia”
Informants who had been exposed to one or more of the versions of the PMTCT guidelines found the language difficult to comprehend.
“If you open the PMTCT guidelines [researcher saw it on the table], their page numbers and the way they are written… there is no way our care providers will understand them. These guidelines need a person who has gone to school up to an advanced level.” (IDI-district informant).
District managers found it difficult to translate or simplify the guidelines as the English language is not used in daily communication in Tanzania:
“It is extremely difficult to translate the guidelines from English into Kiswahili to meet healthcare providers’ needs at the health facility level” (IDI district informant).
Another district officer explained:
“Most of our facility staff has a lower level of education, so if you give them guidelines in an English version they just put them on the table without reading them. Unless we managers provide thorough supportive supervision to clarify some of the issues outlined in the guidelines facility, staff will not understand them” (IDI-district informant).
Whereas the regional informants interviewed did not have a problem with the language used in the guidelines, informants at the district and health facility levels found the use of English language in the development of the PMTCT guidelines prohibitive for their understanding. Indeed, the majority of the health personnel at the health facilities, the first line implementers of the guidelines, expressed that they simply did not understand the content. District informants thus found it difficult to provide refresher training to health workers employing the guides:
“Training facility staff requires that the trainers understand the guidelines thoroughly so that care providers can receive the messages correctly and consistently, (and that is not the case)” (IDI-district informant).
The care providers complained about the lack of abridged guideline versions. Posters with easy steps to take when HIV infected mothers turn up for delivery were said to be available at the hospital’s maternity section only. With no summaries to help them understand the core issues, many care providers felt that they were not in a position to pass on knowledge properly about the content of the changing PMTCT guidelines. In fact, informants at the district and facility levels had difficulty understanding how many of the changes presented in the guidelines reflected the realities in Tanzanian communities; “The guidelines are more theoretically based; they are more for academia, and don’t reflect the realities in our communities” (IDI-facility informant). Moreover, some informants suggested that the PMTCT guidelines might reflect the interests of the donors supporting their ARV provision.
A missing ‘reading culture’: “. . . but have they opened the manuals and read them?”
Aggravating the challenge of manuals that were not readily accessible was a reported lack of a culture of reading, even among district and health facility staff. This was a point identified by regional informants as another major limitation in a communication context:
“Some care providers think that to implement anything there must be training. For example the manual has explained the use of combination ARVs since 2007, but the health facility providers are still prescribing a single dose. If you ask them they respond… oh … I haven’t received training … but have they opened the manuals and read them?” (IDI-regional informant).
The implication of this lack of using the manuals was a lack of understanding and the spread of rumours or hearsay like: “mothers’ milk should be warmed for some minutes to kill the virus instead of feeding the baby directly from the breasts’” (IDI, district informant). This kind of statement was commonly heard, despite the fact that the Tanzanian guidelines do not recommend the pre-heating of mothers’ milk.
Lacking administrative procedures: “Here are your books”
The lack of sufficient knowledge was partly linked to a perceived lack of supportive supervision from the district level. Most of the informants at district and health facility levels also reported the lack of a clear administrative structure that would facilitate a smooth flow of communication of information. This led to poor distribution of PMTCT related information to the lower levels:
“You can receive a phone call from the region; if you go there they tell you ‘here are your books’, and if you open them you find that they are guidelines. In the district, I also circulate them to the health facilities without any discussion, because even those who bring them simply just dump them” (IDI-district informant).
At the district level, the informants reported poor links between the departments that play direct and indirect roles in the PMTCT programme, making it difficult to enforce the implementation.
Missing clinical PMTCT guidelines: “We implementers have never seen it”
Some versions of the PMTCT guidelines were found to be available at the district offices and at a few health facilities, but many informants complained of not having received a copy of the updated recommendations;
“The national staff may change the guidelines but we implementers never get them. You see? Recently we were told that there is a preventive package outlined in the national strategic plan of 2009. We implementers have never seen it. But there [at national and regional level]. . . they have it” (IDI-district informant).
This problem was also reported by the health facility staff: “There is a problem in the distribution of the guidelines. Some of them are not available at our health facilities” (IDI-health facility informant). The same complaints emerged in the group discussion with health workers at faith-based health facility who described receiving little attention from the district in terms of getting copies of the continuously changing guidelines, giving them no chance of retrieving updated information.