A qualitative design involving 20 healthcare providers from ten HIV care and treatment centers (CTC) was conducted from September, 2014 to October, 2014.
The catchment area of the study was the Dar es Salaam Region of Tanzania. Tanzania is a country in East Africa. From the last census (2012), the country was estimated to have a population of about 45 million . Dar es Salaam region has a population of about 4.3million people . The study was conducted at ten Management and Development for Health (MDH) supported sites, which are HIV care and treatment clinics in Dar es Salaam, Tanzania. The MDH care and treatment program was established in 2004. The program provides infrastructure, laboratory, and technical support to the three municipalities (Temeke, Ilala and Kinondoni) in Dar es Salaam.
Sampling and recruitment of study participants
Purposive sampling was used to select the ten CTC by considering the number of children living with HIV who attended the clinics. Healthcare providers experienced with paediatric HIV disclosure were selected deliberately so that they could contribute to the information needs of the study. The in-charge of these selected clinics were contacted by the researchers and were asked to identify health care providers who attend HIV infected children. Participants were included in the study if they met specific criteria : >18 years of age, had been practicing disclosure among HIV children for more than 6 months, and consented to participate in the study. Exclusion criteria included those <18 years of age, < 6 months experience in paediatric HIV disclosure and refusal to participate.
Data collection procedures
A trained research assistant and one of the researchers conducted in-depth interviews using an interview guide translated into Kiswahili language. Eligible participants were given full explanation of the study and its importance. They were also informed of the data collection procedures which involved audio recording of in-depth interviews (IDIs). The interviews covered items in the interview guide (Table 1) plus additional information that was spontaneously suggested by participants. All participants responded to the questions asked during the interview.
Field notes were taken throughout the interviews as a backup in case recording failed and to capture non-verbal information and key themes.
Interviews were conducted until no new information was obtained (data saturation) from participants and redundancy was achieved. The duration of each interview ranged from approximately 30 min to one hour.
Ethical review and approval for human subject research was sought from Muhimbili University of Health and Allied Sciences (MUHAS). Participants who agreed to participate in the study were requested to complete the written informed consent form; only those who provided written consent were interviewed. Confidentiality and freedom to withdraw at any time during the study was ensured.
Data was analyzed by a team of three researchers. An iterative approach of data analysis was used by looking at the data right from the time data was collected. Each day after data collection, the three researchers reviewed the recorded interviews and provided feedback to the interviewers. Audio-recorded interviews were transcribed, and translated into English. The researchers read the transcripts, discussed and agreed on the interpretations. Information from the field notes was expanded into rich descriptions and it was incorporated into the primary data. The interview transcripts were thoroughly evaluated to obtain an overall sense of the content of participants’ responses to various issues.
Data analysis followed content analysis (Graneheim & Lundman, 2004). Meaning units were identified from the transcripts and were condensed. Codes were developed from the condensed meaning units. They were sorted into categories which were later formulated into themes (Table 2).
To ensure credibility of the study, healthcare providers with various experiences in paediatric HIV disclosure were purposively selected to participate in the study. In addition, data was collected using IDIs until no new information was obtained (saturation) from participants. Member checking was done throughout data collection to make sure that researchers correctly interpreted what participants reported. Selection of the most suitable codes and proper coverage of data by creating nodes, categories, and themes was also ensured.
To ensure dependability, researchers used the same interview guide to all participants to ensure consistency during data collection. Questions were re-phrased and modified as the researcher continued to collect data, to ensure that participants understood the information they were asked to give. Proper selection of participants, data collection and process of analysis plus appropriate quotations will allow readers to judge transferability of these findings.
Twenty (19 females and 1 male) healthcare providers from 10 care and treatment clinics were involved in in-depth interviews. There were 14 nurses, 4 nurse counselors and 2 medical doctors. All nurses had diploma in nursing. Nurse counselors had a degree in social work. One medical doctor had a degree in medicine while the other had an advanced diploma in clinical medicine. Participants’ ages ranged from 35 to 57 years, and working experience ranged from 1 to 6 years.
Health care providers’ experiences on paediatric HIV disclosure revealed four major themes (Table 3).
In this study a guardian is defined as a person who looks after and is legally responsible for a HIV infected child whose parents have died or are not able to care for the child. Code numbers are used in the verbatim quotations to represent views from individual participants. A summary of quotes is provided on Table 4.
Health care provider related factors
All healthcare providers reported to have engaged in the disclosure process. They declared that it was a good process, however they still face a lot of challenges. They claimed that children who are disclosed to early tend to understand better their disease condition and have improved drug adherence and health outcomes. In addition, healthcare providers reported that they initiate disclosure when a child persistently begins to ask questions, has poor drug adherence, and poor clinic attendance. Major challenges expressed by healthcare providers during the disclosure process included: negative emotional reactions from children, and parental refusal to disclose to the child.
One healthcare provider reported that:
“Majority of parents/guardians are not ready to disclose when their children have reached the required age. Whenever they come to the clinic, we counsel them on how to disclose to their children but they do not want to do so.”T01
The age of a child at which the process of disclosure was initiated varied among health care providers. Majority expressed that disclosure should begin gradually at an early age. Responses on the appropriate age to begin disclosure ranged from 3-8 years. Full disclosure was reported to occur between 9 and 14 years of age. In addition to a child’s age, they consider the child’s level of understanding about HIV and its treatment before fully embarking in the process. Some of the healthcare providers reported that during the initial stages of disclosure, they begin talking to the child before talking to the parent/guardian. They ask the child questions and establish rapport slowly until the child is ready for disclosure. A health care provider from one of the CTC clinics reported:
“It is important to consider child’s age and level of understanding; we usually disclose to children aging 7 to 14 years.” G02
Furthermore, the findings also show that healthcare providers are not sure about whose role it is to disclose to the child. Some expressed that, they are confused as to whether it is their responsibility or parents’ to disclose to the child the HIV-positive status.
Health system related factors
Some of the healthcare providers reported using books with pictures, models, and drawings to aid in the process of disclosure. For example, one of the books used is about a policeman. The healthcare providers talk to the child about the policeman in the book and his role in protecting citizens. They then link the story with the child’s condition explaining the role of medication in protecting the child’s body. They keep telling the same story to the child until they feel that the child is ready to be disclosed to. Health care providers from clinics that did not have books reported drawing pictures or using other examples during the process of disclosure.
Healthcare providers from different sites reported using different mechanisms of follow-up. They conducted clubs, and used stickers or letters on the files of those disclosed and non-disclosed. This enabled them to follow up HIV infected children for further disclosure, management and care:
One healthcare provider reported:
“We usually mark with a letter “D” on top files of children who have been fully disclosedThe rest with no Ds are reminders that we need to follow up the children making sure that they are disclosed to.”L01
Training and guideline related factors
Findings show that, healthcare providers differed in the way they disclosed the HIV-positive status to the infected child. Others were aware of the national guidelines for paediatric HIV disclosure which requires the parent/guardian to disclose to the child. However, some reported to have conducted the disclosure themselves because of parental refusal to do so. Others were completely unaware of the guidelines and they disclosed to the child directly. A health care provider expressed that:
“I make sure I disclose to all the children if they have reached the required age.”T01
Another one from a different clinic reported that:
“We have been taught from the national guidelines for paediatric disclosure that parents should start disclosing to the child gradually.”G02
Lack of paediatric HIV disclosure training and different sources of training for some of the healthcare providers were seen as reason for this uncertainty. Findings revealed that healthcare providers have received training about disclosure from a variety of sources; however, these trainings were not standardized. In addition, the training content stipulates different ages to begin the disclosure process; ranging from 3–8 years of age. One health care provider expressed:
“I have acquired the ability to disclose from different HIV trainings Last time I attended a two weeks pediatric HIV training and I learned that disclosure can begin when the child is six years of age.”T01
Other healthcare providers expressed that they are more skilled in adult HIV disclosure than paediatric HIV disclosure, making it more difficult to support parents/guardian in disclosing to the HIV infected children. This fact adds more difficulties in their ability
Healthcare providers who had been trained declared that their responsibility was to support parents so that they can disclose HIV-positive status to the infected child. However, others complained that they were confused and did not know if it was them or the parent/guardian who should make the disclosure to the child. This shows a discrepancy in the types of training that healthcare providers have received regarding disclosure of HIV positive status to the infected child.
They thus suggested that further training on how to conduct paediatric HIV disclosure is required.
In addition, health care providers suggested that the duration of training should be longer and the training curriculum should include child psychology topics and different techniques on how to support parents/guardians in the disclosure process.
The duration of training is too short and only a few of us have been trained. Other healthcare providers learn from those who have already been trained. D01. D01
The healthcare providers recommended that paediatric HIV disclosure training should focus more on practical skills rather than theory so that they can acquire the ability to conduct disclosure more effectively. In addition, they suggested that more efforts should be put on empowering parents/guardians in paediatric disclosure techniques with emphasis on early disclosure.
We need to be trained for at least two weeks; one week for theory and another one for practical skills. K01
Parent/guardian related factors
In order to improve the ability of parents/guardians to disclose HIV-positive status to the HIV infected child, some of the healthcare providers reported providing education and counseling sessions to parents/guardians on the importance of early disclosure. In addition, they provided assistance to parents/guardians during the disclosure process. They emphasized the benefits of parents/guardians disclosing to children early to foster adherence to treatment, support the child, help the child cope, increase child’s understanding about their disease, and protect others from HIV infection. Parents/guardians were empowered to begin disclosing to the child slowly at a younger age to help prepare the child psychologically for full disclosure.
Parents should start talking to their child when he/she is 6 years old. We often counsel parents so that they can begin to disclose to their children gradually. A child should be aware of his/her problem when he reaches 8 years of age. Z02
Healthcare providers reported facing a lot of problems when they supported parents in the disclosure process. Most parents/guardians are not ready to disclose to the child because of fear of stigma. Parents have always been hesitant to disclose to children because of fear that the child will spread news in the streets about their HIV infection. They also fear that the child might not react well and perhaps not do well in the studies. Other parents do not want their child to be told because they believe they are too young to understand and handle such information:
Example there was one parent who wanted us to wait until her child completed examinations because she thought the child would be confused.” C02
Another healthcare provider from a different clinic commented:
“Majority of parents fear telling the child because they believe he/she will not be happy. We therefore counsel the mother on how she can disclose to her child.” K01
In addition, parents reported more guilt in comparison to guardians when it came to disclosure. Parents felt that they were the source of infection which made it more difficult for them to share the diagnosis and receive support from healthcare providers.to support them on early disclosure. Healthcare providers reported that compared to guardians, most parents do not want to disclose the HIV status to the infected child. They prefer the process to be carried out by healthcare providers to save them the trouble of being blamed and hated. Delay in paediatric HIV disclosure made it more difficult for parents to disclose to older children because of the anticipated negative emotional reaction once disclosed to.
It is very difficult for a parent telling her own standard one child that: “You are HIV-positive and I am the cause for the problem.” C01
Healthcare providers expressed their concern about the fact that parents/guardians hide the truth about child’s HIV positive status. Instead, parents/guardians were reported to tell the child that he/she has other medical conditions to justify daily use of medication.