Healthcare workers’ perspective about barriers and facilitators to pediatric HIV status disclosure in eastern Uganda using Capability Opportunity and Motivation of Behavior change model

doi:10.21203/rs.3.rs-4810539/v1

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Research Article

Healthcare workers’ perspective about barriers and facilitators to pediatric HIV status disclosure in eastern Uganda using Capability Opportunity and Motivation of Behavior change model

https://doi.org/10.21203/rs.3.rs-4810539/v1

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Background

HIV status disclosure by caregivers to children and adolescents living with HIV (CALH) remains a public health concern in countries with a high burden of HIV despite guidelines for healthcare workers to facilitate the process.

Objective

This study aimed at exploring barriers and facilitators to HIV status disclosure experienced by healthcare workers (HCWs) at two large regional referral hospitals in eastern Uganda with special focus on utilization of guidelines by World Health Organization and Uganda Ministry of Health.

Methods

Qualitative in-depth interviews were conducted among all healthcare workers involved in management of CALH at three hospital-based pediatric HIV clinics. Trained research assistants collected data using a pilot tested semi-structured interview guide designed basing on the capability, opportunity and motivation of behavior change model. The audio recorded interviews were transcribed verbatim and analyzed thematically based on the social ecological model using inductive content approach with Atlas ti software.

Results

A total of 16 in-depth interviews were conducted among healthcare workers including both male and female in equal numbers. The barriers to disclosure were categorized into five levels; 1) individual level: internalized/anticipated stigma of HIV, 2) interpersonal level: anticipated stigma of HIV among caregivers, 3) institutional level: lack of preparatory procedures and training for HIV status disclosure, 4) community level: enacted HIV stigma and unstable home environment for CALH and 5) policy level: limited health funding and access to disclosure guidelines by HCWs. On the other hand, facilitators were mainly at three level; 1) individual level: orphanhood status of the child, emotional reward to HCWs, and HCWs’ awareness of responsibilities, 2) interpersonal level: peer support for CALH, their caregivers and HCWs and teamwork among HCWs and 3) institutional level: disclosure related checklist, monitoring and supervision of HCWs.

Conclusion

The findings highlighted several potentially modifiable factors which when addressed, or reinforced HIV status disclosure among CALH and utilization of existing guidelines can be improved. There is need to conduct more research regarding the implementation of the existing pediatric HIV status disclosure guidelines in Uganda.

HIV

disclosure

children

adolescents

guidelines

Uganda.

About 150,000 children aged below 15 years are living with HIV and the majority are in low-income countries ¹. In sub-Saharan Africa, 88,000 children aged between 0–14 years were living with HIV in 2021 with a weighted prevalence 0.7–1.1% ², ³. Most of the children acquire HIV vertically either in utero, during child birth or through breastfeeding ^4–6. During early years of life, many children receive HIV care without knowing their HIV status due to stigmatization, fear of disclosing the mother’s status, lack of knowledge about the disclosure process, fear of children’s reaction or considering that the child is still too young to understand ^{7,8 9–11}. The World Health Organization (WHO) recommends that caregivers of children and adolescents living with HIV (CALH) should be supported to disclose the HIV status of their children by trained healthcare workers during the pre-disclosure, disclosure and post-disclosure stages ¹². Elizabeth Glaser Pediatric AIDS Foundation also emphasizes that children and their parents should undergo an intensive stepwise pre-and post-disclosure counselling and mental health assessment by healthcare workers (HCWs) ¹³. Similarly, Uganda Ministry of Health also recommends that caregivers and CALH should undergo counselling and other forms of mental health assessment and support before disclosure ¹⁴. Regardless of the above recommendations, pediatric HIV status disclosure remains a challenge in most low- and middle-income countries (LMICs), pointing to possible challenges at the level of healthcare workers. Unfortunately, most existing literature has focused on exploring barriers to HIV status disclosure from the perspectives of caregivers rather than healthcare workers. Additionally, most of the existing studies have not applied standard implementation research methods in exploring these existing barriers and facilitators to pediatric HIV status disclosure. Therefore, this study aimed at exploring the HCWs perspectives regarding barriers and facilitators to pediatric HIV status disclosure at three regional referral HIV Clinics in Eastern Uganda using the Capability, Opportunity, and Motivation model of Behavioral Change ¹⁵. The study considered utilization of existing Uganda Ministry of Health or WHO disclosure guidelines by healthcare workers to facilitate the disclosure process.

Design and study setting.

A qualitative study was conducted among healthcare workers that were involved in the management of children and adolescents living with HIV (CALH) attending three clinics located at two regional referral hospitals in Eastern Uganda. The three clinics were: Infectious Disease Clinic (IDC) and The AIDS Support Organization (TASO) clinic in Mbale Regional Referral Hospital (MRRH), as well as the Jinja Regional Referral Hospital (JRRH) pediatric HIV clinic. MRRH and JRRH are the largest hospitals in the region and provides specialized and general medical services to people from more than 10 districts with a catchment population of about 4.15 million people ¹⁶. The pediatric HIV clinics are part of the respective pediatric departments and mainly provide HIV/AIDS care on an outpatient basis while any admissions are referred to the general pediatric ward. IDC and JRRH pediatric HIV clinics are run by public health service system financed mainly by government while TASO clinic is privately run by the non-government organization. Both hospitals act as teaching sites for various training institutions whereby MRRH is a teaching site for Busitema University Faculty of Health Sciences while JRRH for Kampala International University. Pediatric HIV care services are usually offered by a team of clinicians ranging from pediatricians, postgraduate students from respective training institutions, general medical doctors, clinical officers, nurses, counsellors, and social workers among others.

Study population.

The study targeted all healthcare workers involved in the day-to-day management of CALH at any of the above three clinics. We included all healthcare workers formally employed by the clinics for assessment and management of HIV/AIDS related problems among children and adolescents on either outpatient or community outreach basis since the clinics do not run inpatient services. These included medical officers, clinical officers, nurses, counsellors, medical social workers, and peer supporter leaders. All healthcare workers from other clinics in the hospital who only review CALH upon special consultations were excluded from the study.

Participant recruitment, sampling, and data collection

Potential participants were identified during routine working days and hours as they attended the clinic for review by trained research assistants (ANE – a female psychologist, and RK – a male pre-intern doctor). Both research assistants had prior experience with collecting such data and received additional training prior to conducting interviews during this study. They were initially involved in working with some of the participants during collection of quantitative data from CALH attending the same clinics. The RAs approached potential participants face-to-face, explained the purpose of the study, and requested their consent to participate in the study. Those willing to participate would choose their most convenient time to have the interview to minimize the disruption to their clinical work but also to provide ample time for the interview. Participants were selected purposively to involve only those HCWs involve in the management of CALH, and they were recruited consecutively. All eligible staffs in all clinics were approached by trained research assistants with only two declining to participate and no repeat interviews were conducted. Sample size was limited to all available eligible participants rather than data saturation. Data were collected by the research assistants through conducting face to face in-depth interviews using a piloted interview guide. The guide was adapted from a study by Wakida et al which was developed using the Capability, Opportunity, and Motivation of Behavior (COM-B) model in southwestern Uganda to explore barriers and facilitators to the integration of mental health services into primary health care¹⁷. This model developed by Michie eta al in 2011 has three main domains/ constructs which include Capability, Opportunity, and Motivation.¹⁵ It was based on the understanding that a person requires to have the capability, opportunity and motivation to engage in a certain behavior which in this case is supporting HIV status disclosure¹⁸. Capability either be psychological or physical, opportunity is physical or social while motivation is reflective or automatic. Therefore, barriers and facilitators to pediatric HIV status disclosure were explored using this model in the perspective of HCWs. The COM-B model can be used to design appropriate interventions based on the identified barriers and facilitators as guided by the Behavior Change Wheel.¹⁵ The interview guide included questions that assess barriers to disclosure in general as well as those that mainly focused on the use of MoH or WHO disclosure guidelines. All interviews were audio recorded and additional field notes were taken by the research assistants. Each interview lasted between 30–40 minutes and participants received refreshments during interviews and modest compensation for their time at the end of the interview.

Privacy was guaranteed by ensuring that all interviews or assessments were conducted within a safe, secure, and private place with only one participant at a time.

Data analysis

Each participant was assigned a unique identification code and data was analysed qualitatively. The audio recordings were transcribed verbatim which were initially read for familiarization. Later, the transcripts were coded using Atlas.ti version 23.4 software to form themes using the inductive content analysis under three phases: open coding, creating categories and abstraction. Coding was initially done independently by two researchers experienced in the topic area. Themes were harmonized and categorized using the social ecological model by considering both manifest and latent content. Any discrepancies were resolved by involving a third researcher with more experience (mentor/supervisor) to reach consensus. Results were reported following the COnsolidated criteria for REporting Qualitative research (COREQ) checklist (see appendix 1)¹⁹.

Sixteen (16) participants (8 males and 8 females) were recruited in the study with majority (n=8) from the IDC (see table 1) and only two eligible participants decline to participate in the study. One nurse was uncomfortable with being recorded while one social worker cited that her contract barred her from participating in such studies.

Table 1. Characteristics of HCWs that were interviewed (N=16)

Participant characteristic	Frequency (n)	Percentage (%)
Job description
Counsellors	3	18.8
Nurse	2	12.5
Clinical officer	3	18.8
Medical officer	1	6.2
Medical social worker	3	18.8
Young children and adolescent peer supporter	4	25.0
Sex
Males	8	50.0
Females	8	50.0
Study site
TASO Mbale	5	31.2
IDC - Mbale	8	50.0
Jinja Pediatric HIV clinic	3	18.8

Barriers and facilitators to pediatric HIV status disclosure and utilization of existing disclosure guidelines

Using the social ecological model, the themes for barriers and facilitators were organized under five levels which included individual, interpersonal/relationships, institutional, community and policy levels as indicated in Figure 1 below.

Individual level

Internalized and anticipated stigma.

HCWs reported that many caregivers especially biological parents have internalized stigma whereby they present with feelings of unworthiness, guilt, shame, and self-blame for having infected their children with HIV. This makes it very difficult for them to inform their children about their status as they think that they will blame them for illness. Because of this stigma some caregivers reportedly fail to disclose to their children because they fear that these children will feel angry and probably become violent, sad, or suicidal after knowing their status.

HCW3A/SOCIAL WORKER: “There’s a home I went, there’s a mother who came here and invited me, her husband was coming, and they were going to disclose to the children. I went and reached; the woman started crying. I asked what’s wrong, she said “yesterday, the child wanted to kill me. She is blaming me for infecting her with HIV, I did not intend to infect the child. I’m just a woman who was abandoned by the husband and me breastfeeding the child, although they told me, I had nothing to eat. The husband had already gone so I thought by breastfeeding her up to one and a half I was doing something. Even giving birth, I had no health worker who was by my side. I was alone with my mother, and I think something somewhere went wrong so I’m praying that you somehow forgive me”. So, you know she was down and in a bad situation.It’s not that all these children who get infected by their mothers it was intended or they didn’t follow the guidelines, sometimes the situation is different.”

On the other hand, orphanhood status was reported to be a facilitator to HIV status disclosure since the death of biological parents eliminates the mark of stigmatization and the risk of disclosing the parents’ HIV status. Hence rest of the relatives can easily inform the child about the illness sometimes in relation to their parents’ death since the community presumably already knows.

HCW11/ SOCIAL WORKER. “Mainly most of the fears are around, how am I going to tell my child that I’m responsible for their HIV infection? So, the majority would prefer not to disclose especially if it’s a mother taking care of their biological children. But if it is a mother who passed on, and this adolescent has grown up in the hands of another caretaker, it is a little easier for that caretaker to disclose. They don’t usually reject having disclosure done but for the biological parents, the majority would prefer the health worker to do it. …that’s why it is only easy for children whose parents have already passed on to have it disclosed. They can do it’s as early as 5, 6 where the whole community knows, they are positive.

HCW3B/SOCIAL WORKER: “…there’s a child headed family of course where there’s nobody else. No adult or caregiver. So, you are forced to disclose to such a child.”

Delayed disclosure

HCWs reported that when children grow up to late childhood, it becomes difficult but more urgent to disclose as such children tend to create pressure to the caregivers especially parents and HCWs to inform them of their illness. Unfortunately, under such circumstances, the HCWs find it difficult to follow the standard guidelines during disclosure process.

HCW6/COUNSELOR: Two years back, I got a scenario of 16-year-old not yet disclosed to. When we disclosed to this boy, he stopped art for three months. Got disappointed with the father and developed TB, so we continued to engage him. Not until he resumed art and started TB treatment. So it is always important to start the disclosure process early so that by the age of 12 someone knows his / status”

HCW7/NURSE: “The child was putting his mother on tension. It took us time, but we finally settled it and we talked to the mother and son and we left when they were very okay but otherwise it was an issue. Why? It was because of non-disclosure. Because the child had gone 18 years without being disclosed to and he disclosed to himself.”

HCW4/NURSE: “In areas where disclosure is not done. The outcome remains a challenge, the children will remain non suppressed. Or they’ll remain having socio-economic challenges, they’ll even have some kind of psychiatric disorder like depression, anxiety, and any kind of mental disorder. Some of them end up having advanced HIV. And the worst of it, they spread the disease because there’s no disclosure. It leads to segregation, separation, and isolation.

Whereas guidelines recommend disclosing according to child’s developmental abilities, HCWs noted that it is not easy or very clear how to assess and decide about child’s maturity or readiness for disclosure. This is because some “young” children may be very inquisitive and seem to understand the HIV concepts while “older” ones may not hence delayed disclosure in some children.

HCW8/CLINICIAN: “There are standard guidelines though sometimes we may not be able to follow them to dot. Because disclosure being a process and having that we start at a certain age but also bearing in mind that children’s development and growth also differs. There are those ones you look at and feel like they are of this age, and the disclosure process can be able to start because they can comprehend things, they can understand things and are able to reason. Yet we have a certain age but here are those ones whereby you are like this one should be disclosed to even if they are young at least they can understand what and why they are doing this.”

HCW2/CLINICIAN: “I’ve seen a child in p.2 who chooses to know the reason why. So, the parent comes to you saying the child wants to know why. Guidelines are good but there are some exceptions where you see that there are some things that must be a blended truth to a child who is inquisitive and maybe the earlier the child knows, the better.”

Other times it is the anticipation of negative emotional reactions by HCWs and caregivers from children that delays disclosure.

YAPS2: “So, if you tell the child that you know why you are taking medicine every day or disclose out the child can end up even abusing you. Misbehaving. They want to act in a weird way. Others can bring out their anger and cry for a long time. They can make you scared that they are going to do something bad to themselves. And you feel bad and wish you didn’t disclose.”

Emotional reward to HCWs

Some HCWs reported that positive emotional reactions expressed by children or their caregivers like happiness encourage them to facilitate the disclosure process as they elicit feelings of being appreciated for accomplishing such a difficult task. Additionally, appreciation from their employers or witness the success of some children who they supported through disclosure were also reported to elicit similar feelings hence motivating them to continue facilitating disclosure process.

HCW5/NURSE: “… there is also that one where the child can be happy and thank you for telling them. Those are children who understand. So that is the benefit you get from doing this. the other benefit you get is appreciation by parent.”

HCW3B/SOCIAL WORKER: “My personal motivation is appreciation. Sometimes I do the work and my bosses say thank you and yet the payment and the resources are not big. You leave the facility and go to the community. So sometimes I go as far as digging into my own pockets, even extra hours. There’s a time I went to the community on a weekend and reached home at 8pm.”

HCW5/NURSE: “…if you have followed up in the community to go and disclose you are going to bring this person back to ART clinic, so you counsel them about the drugs and those ones who we counselled when their children had dropped off drugs some are now lawyers. Some are big people, and they give the credit to you.

HCW’s awareness of responsibilities

HCWs who viewed disclosure as being part of their job description and responsibility were more likely to support disclosure and try to follow the guidelines as opposed to those who thought that it is not part of their work or responsibility.

HCW10/CLINICIAN: “Disclosureis a part of my role because as one of the frontline health workers, one of the persons that interfaces with the clients and one of the persons to whom these caregivers or clients will disclose what they are going through, I’m expected to know how to go about the disclosure in this state. So, I have a big role to play in the disclosure process.”

HCW1: “First of all, I love my job. When you love something, it becomes easier for you but when you don’t love it becomes hard, so I love what I’m doing. That triggers me so much to take responsibility on whatever I do for my clients including facilitating HIV disclosure.”

HCW8/CLINICIAN: “No disclosure is not part of my job description, though you will realize that when we are in the clinic, we have kind of role description. what we are supposed to do. Now issues around disclosure are more like psychosocial issues. Now sometimes if you are not this kind of service provider who can say no, let me also try to understand the psychosocial part of this child, there you will be fixated on your medical bit of it, trying to do investigations, trying to discover whether this child is swallowing his medicine well. Trying to diagnose what the problem at stake is but you can even be able to explore the psychosocial bit of it, because if you just prescribe medicine without trying to engage issues of disclosure… disclosure may also affect adherence in a way.”

Interpersonal level

Anticipated stigma.

This was a very important barrier to disclosing HIV status to children by caregivers who have kept their status undisclosed to their partners. This is because such partners think that disclosing to children may cause accidental disclosure to the partner or other people closely related with the caregiver.

HCW3B/SOCIAL WORKER: Yes. Sometimes there are those clients where mother and child are positive, and the mother has not disclosed to the family. They’ve not told the siblings and other people and so they cannot tell the child. They take the medicine secretly.

HCW1: So for instance, when we are having a family where the couple is discordant and its only mother and child who is infected, and they have not disclosed to the father, do you think disclosure is a bit easy to the child, or sometimes the one parent hopes to conceal it from the child in order to conceal it from the other parent.

The anticipated stigma is worsened by the anticipated reactions or maltreatment from such significant people around them which may disrupt such strong relationships hence preferring not to disclose to the child to avoid such consequences. Such fears lead to caregivers being in denial or having negative attitudes towards HCWs who try to disclose to their children.

HCW4/NURSE: These caregivers who have been in denial will not disclose. Some people who live in denial and their children get advanced HIV. They come when they have TB, advanced meningitis, STIs, discharges allover, boils, skin disorders. They end up having challenges to disclose.

YAPS4: It is sometimes difficult because you can even be arrested for it because we have some people who don’t want totally to hear about it being told to their children because they may get where they are discordant. So, when I speak, the father may not know that the mother is positive. So, the child can go and ask daddy why this and this. Which will bring conflict now it is very hard for us.

Peer support

HCWs reported that peer support is a very strong facilitator for HIV status disclosure among CALH and this was reported at three different levels which are child to child, caregiver to caregiver and HCW to HCW. At all levels, there is sharing of experiences and ideas related to disclosure between peers and sometimes follow-up, hence making it easier for each other. Child to child peer support is mainly provided by Young children and Adolescent Peer Supporters (YAPS) who exist as part of support staffs in the current healthcare system.

HCW6/COUNSELOR: “The follow up I can say, most of these clients are attached to the expert clients, what I call the YAPS, so they are always in touch at least once every month that is if the adolescent has been taking well treatment. If there are cases of concern, they can forward it to me and as the counselors we engage them. But these children are being monitored by the YAPS who see their adherence and overall attendance in the facility.”

Caregiver to caregiver support is mainly provided by those caregivers who have successfully disclosed to their children or existing caregiver peer supporters like linkage facilitators or expert clients.

HCW6/COUNSELOR: “Yes, they normally interact when they have come for their clinic day so I believe during their interaction they normally share experiences, for instance a caregiver might be there fearing to tell their 13-year-old child, they’ll be like this child wants to know why they take medicine. Then another caregiver will be like tell him this, me this is how I handled mine and we are now okay. So, through sharing of experiences, I believe the caregivers can influence their colleagues to disclose.”

HCW11/ SOCIAL WORKER: “In our caregivers’ meetings we call out those who have done it well, to share the experiences, then the challenges, how they handled the challenges. So even those who are scared pick up slowly, that’s why we have 2 years and during the preparation we tell them what to talk about before they tell them that they are infected with HIV.We need to move away from health care workers and the supporters, and we start engaging people who have done it well in the community level. We bring out those successful caregivers to share but we do it at a facility level. However, we feel if it scaled up at community levels especially if they are residing within the same catchment area, you can attach a struggling person to a supporter. They can really support the person. The issue is after knowing, now what? That is the most challenging issue. Some adolescents tend to be withdrawn, have suicidal tendencies. So, if we have someone attached to them within their catchment area, I feel it would be good though it has a cost attached because she would expect some transport. but it would be something good out of it.”

HCWs reported that those who routinely talk about or conduct disclosure act as good influence on others hence motivating them to also get involved in facilitating caregivers to disclose. Also, the availability of technical people and supervisors encourages others to participate knowing that they will be supported in case of any challenges during disclosure process.

HCW6/COUNSELOR: “Then on side of healthcare workers. The influence of disclosure may be sometimes we give health education groups and sometimes you find the health worker is talking more of HIV disclosure during the health education talks, so others can learn from him/her.”

HCW6/COUNSELOR: “The hospital environment facilitates the process because we have technical people, counsellors who are trained counsellors.”

Additionally, some HCWs reported that sometimes, “supported disclosure” is conducted whereby several relatives, friends, community health workers and HCWs meet and disclose to a child with consent from the primary caregiver. This process is mainly driven by community health workers like expert clients, linkage facilitators, mentor mothers and village health team members by identifying children who have not been disclosed to and hence working with the HCWs to ensure that disclosure is conducted.

HCW3B/SOCIAL WORKER: “So, the parent can say I’ve given you that child, you go in a room and talk. Sometimes they come as a family, father, mother, and other siblings, with peers and I, we disclose to the child.” “Yes, it’s a group disclosure. Yes. A group of about 7 and we disclosed to the child.”

HCW11/ SOCIAL WORKER: “All the PLHIV have community health workers attached to them. Categories of community health workers are the YAPS, mentor mothers, linkage facilitators. So, all active clients in care have someone attached to them. So, when we notice its child A having a problem with support or disclosure, we encourage their attached supporter to follow up on them. So, they will be like middlemen between families and facility. They will give us the information and we can give the support. We cannot do it on the clinic day because it may be overwhelming.”

Teamwork

Some HCWs highlighted that working as a team whereby everyone gets involved in disclosure to do their part well can motivate them and facilitate disclosure.

HCW5/NURSE: “Teamwork can improve disclosure. When you work in a team you love your job. Where there is no teamwork. you start finger pointing that so and so is supposed to do this. So, I don’t see anything apart from teamwork.”

HCW9/CLINICIAN: “And the people you are working with; they are a very good motivator. If they like and they embrace whatever you introduce to them, that would be good for disclosing to our children.”

Institutional level.

Lack of disclosure training for HCWs

Most HCWs at the HIV clinics reported no having received any disclosure training while those who were trained also reported need for refresher training to cope with the changing standards of practice. This was evidently reflected by the inadequate knowledge about pediatric HIV status disclosure process or guidelines.

HCW11/ SOCIAL WORKER: “It is a hard thing, and we realize that some healthcare workers have not been trained. Majority of our healthcare workers are not trained, even when you sit in their disclosure sessions, it is trouble so I’d give a recommendation that if we could have like trainings, especially for those who work with adolescents to have more information on how to go about the disclosure process because whatever happens in the disclosure process will either negatively or positively affect this young person for the rest of their lives.”

HCW6/COUNSELOR: “Of course, there’s need for refresher trainings basically we even get new people. You realize maybe some people we trained at that time are no longer here. The new people who come to work with us, are not trained. So surely if we can get another training it would be of great advantage. ….as a regional hospital we have a mandate of the entire region so there are some facilities that we even never trained. We trained a few. So, there are so many that are even managing HIV care but the staffs there are not trained in psychosocial support.”

HCW2/CLINICIAN: “If you don’t know what to say, at what time and how to say it, it becomes a challenge. Children ask a lot of questions, so if I don’t know how and what to answer them, it becomes a problem to disclose. But if I’m empowered, if I know what to say at that time, and how to say it to a child, that one really facilitates, makes it a bit easy for me to do it. We need knowledge.

Lack of preparatory procedure

Some HCW reported lack of proper procedures and steps to follow in preparation for disclosure at their clinics such as accessing child’s medical records documenting his/her disclosure status is a barrier to disclosure. Hence HCWs believe that the HIV clinics need to put in place pre-disclosure preparatory procedures to improve the disclosure process.

HCW3B/SOCIAL WORKER: “Purposely for disclosure? No, there are no steps that can prepare the facilitation of disclosure because normally they say we integrate. When we are going for refill, follow-up of missed appointment, when you have a disclosure, you integrate.”

YAPS2: “I always had that in mind that especially when we are going to do disclosure, it’s good for the organization to create a list of children we know don’t know why they are taking medicine. Like we can make for them a clinic of 15-20 so we can plan and facilitate them with some money, in it we are looking for a point of them knowing why they’re taking their medication. In 2017, we had a group of members who were not suppressing, and the issue was disclosure.so when we came in and planned and saw how we are going to fight it, we sat them down, had the issue of nondisclosure. We sat with them, they all suppressed and are all mature men.”

Checklists, monitoring, and supervision

HCWs reported number of routine findings, clinical considerations or activities that regularly remind them of the need to facilitate caregivers to disclose to their children which included.

Clinical status of children such as those who are viral non-suppressing, having comorbid medical illnesses, and poor adherence to treatment. Also, children at transitional stages such as childhood to adolescence or adolescence to adulthood were always considered critical for disclosure as these would undergo care related changes like change of clinics.

HCW3A/SOCIAL WORKER: “It depends. On the situation. Like if somebody is having really bad adherence and you really need somebody to support your break. We will disclose. … when the child is sick. And the condition that the child is in necessitates disclosure. For example, if a child is sick and they add on the pills, like HIV is there yes but there’s another chronic illness that needs the child to take some drugs like daily maybe, like the ART. You will explain to the child. This you are taking for a,b,c, this for d,e,f. So, there you be forced to disclose.”

HCW11/ SOCIAL WORKER: “As I said it’s a process so when the children clock 10 years, they are now adolescents, we ask the caregivers because as a clinic, we are supposed to schedule 10-18 years for the adolescent clinic. But before we schedule them, we need to make sure that they have been disclosed to so when they clock10 years, we usually ask the parents or caretakers, has your child been disclosed to? If they say no, then we start discussing with him or her on how they can go about it.”

Additionally, HCWs were motivated to facilitate disclosure by knowing that their work is being monitored or supervised by their employers through reviewing some specific clinic records and audit tools.

HCW8/CLINICIAN: “So the Psychosocial services as we are all supervising, but we have what we call sitting sessions, somebody can choose maybe once in a month to look at it and try to monitor that person by sitting in that session. But sometimes we also do what we call file reviews then we can date back that person and see.”

HCW3A/SOCIAL WORKER: “We have the audit tool which we use. It is because we collect the primary data, it is entered in the system. So, our M&E can generate the data. Has the person been disclosed to? Yes, or no so we know which children have been disclosed to and this ensures that disclosure is done.”

Community level

Enacted Stigma of HIV

HIV related stigma in the community and hospital setting was cited as a major barrier to pediatric HIV status disclosure. This is because of the people’s negative perceptions and misconceptions towards HIV/AIDS which make caregivers to feel stigmatized hence fearing that when they tell the children, other people will know which will worsen the stigma towards both child and caregiver.

HCW9/CLINICIAN: “When it comes to hindering, its stigma. When someone is growing up even in schools, and our community if anyone talks about HIV no good thing is about HIV. So, in such instances when they talk about bad things about HIV can you imagine when you tell someone you’ve HIV and you are going to take these medicines. So, the community itself has not done good to us. And because of the diversity, people have different beliefs, different ways of thinking and when you combine these, it takes a lot for you to go along with the process, so it becomes a burden on our side sometimes. Because you may explain to someone and think they have understood the next minute it’s like you’ve done a lot of nothing.”

HCW3A/SOCIAL WORKER: “One, there’s rejection on the side of the child. Some children are rejected by caretakers. So, when you disclose with the aim of helping the child, you are causing rejection. Sometimes people in the community can also reject the caretaker. That for you only give birth to only positive children. So, disclosure is good, but we also see the negative side. As much as we want them to know, we want to put into mind the negative effects.”

Unstable child’s home environment

Children from homes characterized by changing caregivers, separated or stepparents and those that cannot easily be accessed (such as grandparents or those with severe mental illness or disabilities) were reportedly having challenges with disclosure. This was because some caregivers such as sex workers never have enough time for the children to disclose to them while other children having multiple caregivers who change from time to time affecting the education/training aspects of the disclosure process.

HCW4/NURSE: And now to children, when a child is born to mother who is a sex worker, has no time to tell the time that with you, you’ve abcd. Then children who are cared for by many people. When the mother delivered and died. The aunt took over, the aunt who took over does not provide care thus the next person takes over, when you come to the hospital, some may have a lot of challenges.

HCW6/COUNSELOR: The challenges are that some adolescents have multiple caregivers, for instance today he comes with the mother, you start disclosure, talk about it, encourage the mother to start the process, counselling of disclosure. And this mother accepts that I will take to him but on the next visit we shall be ready but now the next visit he comes with a grandparent and the grandparent says first wait so it delays. Now another time maybe the uncle brings this child. So you find maybe the child is having so many caregivers who normally bring him/her to the clinic, it lengthens the process.

HCW7/NURSE: Depends. There are others who stay with only their grandmothers. Whereby they come for the refills themselves, they come to the unit alone for the drugs. In such scenarios you cannot say go and call your grandmother. They will tell you my grandmother is disabled. Some of them are drug addicts. they don’t have time to come to the facility.so in such scenarios you will never see them in the facility to disclose.”

Policy level

Limited access to guidelines

Most of the HCWs report having no or limited access to pediatric HIV status disclosure guidelines issued by local authorities or World Health Organization which negatively impacts on their ability to facilitate disclosure. Due to this unavailability, some resorted to using other guidelines (such as adherence counseling guidelines) or job aids that are not primarily design for pediatric HIV status disclosure while others disclose or facilitate disclosure process without following any guideline which predisposes children to unsafe disclosure.

HCW3B/SOCIAL WORKER: “Sometimes these guidelines are not in the vicinity. Especially us who are on the ground. Though they might be in those offices, they’re not there for us. So, we need to access them.”

HCW10/CLINICIAN: “I would ideally remember to follow the guidelines during disclosure process, to follow the steps. And as well be flexible according to the situation. Unfortunately, these are guidelines that are not displayed, they are not readily available to everyone like you know because the disclosure process is one that you will not predict, that it’s going to happen at this time, or you will need to do it this time. And I feel these guidelines should be either pinned in form of SOPs or having a desk top job aid for a health worker to refer to at the time when this need arises”.

HCW9/CLINICIAN: You see these people who are trainers of trainees, it is a bit broad and non-specific, so usually you can’t use the same tool to assess every individual because you know they are different.

Additionally, those who could access the guidelines reported tha they are lengthy and time consuming hence being difficult to apply given time constraints in their clinics. Consequently, they advocated for provision of summarized versions of the guidelines which can be easily applied in real clinical settings.

HCW10/CLINICIAN: “Using the guidelines should be easy. One that does not take a lot of time because we have health workers with quite a lot to do during the day. I look at the ideal guideline as one that is as short as possible but elaborate enough to guide the health worker in that process”.

HCW9/CLINICIAN: “you see disclosure usually you need talk to any, either the guardian or child. And because of the big numbers, I’d say usually it is done on clinic days, you can’t have a day specifically for this, so I’d say it is overwhelming. You may not have that much time to follow through the protocol and provide what is expected of you.”

Inadequate health funding

HCWs reported many challenges for HIV status disclosure which were directly related to the inadequate health financing which makes the environment in health facilities unfavorable for facilitating disclosure. these challenges included inadequate staffing level which leads to work overload by the few available staffs and posing time constraints due to conflicting schedules.

HCW3B/SOCIAL WORKER: “As I said, another challenge is staffing. Sometimes we are overwhelmed, and we don’t have enough time to take the disclosure process so it’s also another challenge. For instance, I can have three children who come into the clinics and are overdue for disclosure. And they can come with the parents who approach you, and they’ve brought them and are ready. So, to do that you do it fast to cover it up.

HCW10/CLINICIAN: “Also, time is a factor, is something that some of us may not have given the number of patients to attend to. For example, the clients you have before you are one that have to have the disclosure process started. But then you have a long line of clients to attend to. And this there are two outcomes, you may not ably or not satisfactorily support the disclosure process or not doing it at all because the priorities here are competing.”

However, to navigate the above, some HCWs reported that pre-disclosure planning helps them to prepare well and give enough time to the clients as per their convenience. Additionally, this allows them to organize all the necessary documents including guidelines to be followed during the process.

HCW4/NURSE: “You arrange and give the person enough time both for allowing anxiety, for questions for guidance and for allowing the client to decide. And if it’s a child you have sessions, one session for the parents, one parent or both, later on you find out the understanding of each other”

YAPS2: “As health workers, we plan on how we are going to start doing disclosure issues. After planning when the parent is ready, we call them, sit down as a family and disclose. …In 2017, we had a group of members who were not suppressing, and the issue was disclosure.so when we came in and planned and saw how we are going to fight it, we sat them down, had the issue of nondisclosure. We sat with them, disclosed, they all suppressed and are all mature men.”

Also, HCWs reported that clinics which lacked private spaces where HCWs could discuss disclosure related issues with caregivers and/or children were not conducive for facilitating disclosure process as this affects the ability to share sensitive health information in fear that other people will get to know.

HCW6/COUNSELOR: “As adolescent clinic we lack privacy, the space, sometimes you find there are other people, and the adolescents are not always comfortable with adults. So, at times you don’t find that favorable space or place to offer the disclosure. Because someone discloses to you, you don’t anticipate how this person might react. This person might cry, and everyone is looking at this person so sometimes it really hinders.

HCW10/CLINICIAN: “There’s congestion, not enough space to allow confidentiality. Someone must first move around and check if there is a readily accessible room that is not occupied, which is a challenge. That’s one of the challenges because almost everywhere is occupied by other health workers so at times you must postpone, and this one is not helpful.”

Finally, HCWs reported that limited facilitation in terms of children welfare, stationery, and other aids to carry out disclosure related activities in clinic setting is a barrier to disclosure. Also limited facilitation in terms of transport, airtime for communication, among others, to follow up and conduct disclosure activities in the community was cited as a barrier to HIV status disclosure.

HCW4/NURSE: “There are some facilitations which are not done, like here for example where you have children who need disclosure, and you need like porridge for them, it remains problem. Having objective charts, stationary materials, dolls etc. also contribute to communication. There’s need to have some small things like objective charts, to help with teaching and sharing. There’s a small TV but even for it to be effective, it needs effective programs so that children can learn when they watch.”

HCW2/CLINICIAN: “No measures to encourage disclosure at the clinic. It’s you yourself to do it. It’s your own means. There’s no facilitation.”

HCW1/COUNSELOR: “Sometimes we need facilitation of follow up because we need to follow up these clients because if we don’t get feedback and receive them at the clinic, we must follow them in the community so that we continue with the process so that transport refund is not there. We also need airtime to remind them so at times we have that challenge.”

This study aimed at exploring the HCWs perspectives regarding barriers and facilitators to pediatric HIV status disclosure with focus on guideline utilization in eastern Uganda. The findings indicated that barriers to disclosure and utilization of guidelines were at five different levels which included internalized, anticipated and enacted stigma at individual, interpersonal and community level, delayed disclosure, lack of preparatory procedure and disclosure training and unstable home environment at individual, interpersonal and community levels as well as limited health funding and access to guidelines at policy level. Facilitators were mainly at three levels including orphanhood status, emotional reward to HCWs, awareness of responsibilities at individual level; peer support and teamwork at interpersonal level; and checklists, monitoring, and supervision at institutional level.

Several of the highlighted barriers to HIV status disclosure among children align with existing literature hence need to be addressed. For example, HIV related stigma has been documented severally, as a major hinderance to disclosure among all groups of people living with HIV^20–23. The most common and debilitating types are self/internalized and anticipated stigma experienced both by caregiver of CALH which make people with HIV feel unworthy or think that they will be discriminated by others in their societies^22,24. Whereas, internalized stigma is characterized by feelings of shame, guilt, unworthiness, anticipated stigma is marked by caregivers’ fear of negative emotional reactions such as anger, excessive sadness and suicidal behavior from the child or rejection and maltreatment by the partner especially for those couples who have never disclosed their own status to one another. This is in line with several studies which have highlighted caregivers’ fear of negative emotional reactions from partners, family and close relatives as major hinderance to HIV status disclosure to children^25–27. This study further highlights that these reactions can equally affect HCW’s willingness to facilitate disclosure if directed to them. Enacted stigma can also limit disclosure of HIV status because when people become discriminated against, they lose motivation to disclose to their children tin fear that they will face the same^21,24. In communities where HIV has been linked to immorality or promiscuity, it becomes difficult for parents to disclose since they fear that if the community gets to know their status, they will be judged and discriminated against^28,29. On the contrary, orphanhood status was found to make disclosure of HIV status to the child easier because it eliminates the stigmatized individual leaving the child with no one to blame. Among couples that have never disclosed to each other, orphanhood also eliminates the risk and psychosocial complications of unintended disclosure such as interpersonal conflicts hence making disclosure easier by other relatives²⁷. Therefore, this study further emphasizes the need to address all forms of HIV-stigma to promote HIV status disclosure among CALH.

Also, the study highlighted that delayed disclosure was an important barrier to utilization of guidelines during as it creates a sense of urgency which increases the risks of unsafe disclosure and makes following disclosure guidelines difficult. This could also be worsened by fear of negative emotional reactions from such older children hence continuously barring disclosure. That notwithstanding, it is important for HCWs to prepare caregiver to initiate disclosure process early enough as per the recommended (pre-school stage) guideline to mitigate such shortfalls³⁰. However, several studies have also reported that some caregiver fear to disclose to children because of age where they fear that young children may not comprehend the concepts related to HIV or cannot keep a secret^25,31,32. Hence, whereas guidelines recommend that disclosure should be done according to child’s maturity, age, and cognitive abilities, this seems to pose a practical challenge of assessing the acceptable level of maturity and readiness by HCWs or caregivers to initiate disclosure leading to delays.

Among HCWs, emotional reward was a strong motivator to facilitate disclosure, and this was mainly achieved by being appreciated by caregivers, CALH, or their employers/superiors for accomplishing such difficult task. The appreciation gives a sense of satisfaction at work hence providing both intrinsic and extrinsic motivation for sustained behavioral change^33–36. Also being aware of that HIV status disclosure is their responsibility and part of job description could motivate HCWs to engage in it as an extrinsic motivation since it gets them paid.

At an interpersonal level, teamwork was found to be a strong facilitator to disclosure as this improves group dynamics providing a favorable work environment among healthcare workers where each member plays their role in the disclosure process. Also peer support systems among HCWs, CALH and caregivers play a very vital role in pediatric HIV status disclosure. For HCWs, utilization of guidelines during disclosure is enhanced when they support each other regarding their application which enhances peer learning. Additionally, existing peer supporters for CALH (YAPS) were reported as a strong block to disclosure as these can share their experiences and provide additional information about HIV/AIDS to others which helps them to cope better. The HCWs also highlighted that strategies geared towards enhancing caregiver-caregiver support through disclosure can improve disclosure as those who have successfully disclosed can share their experiences with those struggling to undergo the process. In some cases, supported disclosure can be used as a form of assisted disclosure if the caregiver feels not confident enough to do it alone^37,38. These forms of peer or social support align with WHO recommendation of assisted disclosure strategies such as “caregiver buddy” and others which can be utilized to improve disclosure³⁸. In countries like Uganda where professional staffs are limited, existing peer and social support systems such as YAPS, linkage facilitators, expert clients and other community health workers can be explored as alternatives that can cover the existing gap as these have been found to work for other populations living with HIV [24], [25], [26].

Unstable home environment characterized by unavailable, or unreliable caregivers and those who have not disclosed their own status to other people are less likely to disclose to their children. This means that children with such caregivers may be at higher risk for non-disclosure hence those caregivers may need more support and psychoeducation about disclosure to disclose to their children. This comes as a strong consideration for settings where there is an extended family system that raises the orphaned children with frequent change of caregivers or leaving the children with old disabled relatives who cannot easily sustain the disclosure process^42,43.

At institutional level, this study highlights the need for more disclosure preparedness at health facility level by putting in place preparatory procedures for HIV status disclosure to be followed by staffs as well as training healthcare workers regarding disclosure process and use of existing guidelines. This will help to bridge the knowledge gap about pediatric HIV status disclosure among healthcare workers. WHO noted that one of the commonest barriers to HIV status disclosure among CALH was las of knowledge about disclosure process among healthcare workers⁴³. In this study, the lack of knowledge was mainly in relation to disclosure guidelines and processes as well as benefits of disclosure. Training HCWs does not only improve knowledge but also skills for disclosure which can motivate and build confidence among healthcare providers⁴⁴. Additionally, HCWs should be encouraged to incorporate disclosure into their routine activities and planning for it ahead of time as it not only facilitates disclosure but also use of disclosure guidelines during disclosure process.

Additionally, there is need to reinforce the observation of the various checklists among HCWs which have been found to encourage HCWs to initiate disclosure process and continue supporting caregivers to disclose. These include clinical status of child especially those with poor adherence to treatment on viral non-suppression, age of the child especially those who have exceeded the recommended age for disclosure as well as routine monitoring and supervision of HCWs’ disclosure activities. Some of the checklists create a state of urgency for disclosure to avoid poor clinical outcomes that have been linked to non-disclosure among children^45,46. However, it is important to note that some of the checklist considerations like children poor clinical status that create a state of urgency may make prompt following of disclosure guideline by HCWs difficult.

Lastly inadequate health funding remains a major challenge to HIV status disclosure among children as it leads to inadequate staffing which creates work overload among HCWs and time constraints due to competing interests. Specifically, the resultant time constraints limit the use of existing guidelines because it would make the process lengthier. This is in line with the existing literature and guidelines which highlights that disclosure is a process rather than an event^13,30,37. Whereas limited health funding has often been highlighted as a challenge in the health sectors of most developing countries, there is dire need for health policy makers need to revise their funding priorities to ensure good health service provision especially to such vulnerable populations^44,47–49. In addition to improved staffing, there is a need to avail disclosure guidelines in clinics, improve facilitation and monitoring/supervision of all disclosure-related activities including prompt following of guidelines during disclosure process and encouraging teamwork among staff. The limited health funding also affects the disclosure environment by not providing adequate spaces to ensure privacy and confidentiality during disclosure process. Hence in circumstances where privacy cannot be achieved at health facility, community-based disclosure approaches can be utilized to enable caregivers and CALH share their information comfortably during disclosure⁵⁰

However, this was a facility-based study that assessed barriers and facilitators to pediatric HIV status disclosure considering only HCWs’ perspective, hence there is need to consider other stakeholders in the disclosure process such as caregivers and policy makers.

As HIV status disclosure remains a significant public health challenge in resource limited settings, there are several modifiable factors that can be addressed to minimize the magnitude and effects of non-disclosure and improve utilization of guideline in the disclosure process. Therefore, interventions are needed to address these factors which involve multiple stakeholders from individual to national/policy level using multi-pronged and multidisciplinary approach with rigorous stakeholder engagement. These may focus mainly on addressing the different forms of HIV stigma, optimizing peer support systems, addressing institutional challenges, and improving health funding. Whereas there are guidelines for pediatric HIV status disclosure at national and international level, their availability and utilization by HCWs is limited. Hence there is need to develop implementation strategies that will improve the uptake of these guidelines and hence improve disclosure among children. Also, further research is needed to compare effectiveness of health facility- and community- based approaches to HIV pediatric status disclosure.

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Healthcare workers’ perspective about barriers and facilitators to pediatric HIV status disclosure in eastern Uganda using Capability Opportunity and Motivation of Behavior change model

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