The overall sample consisted of an equal number of adolescents, caregivers, and health care providers (n = 15 for adolescents, n=15 for caregivers, and n = 15 for providers).
Adolescents
There were eight female and seven male adolescent participants. Their age ranged from 12 to 19 years, with a mean of 15.2 years. Their period in HIV care and treatment ranged from three years to twelve years, with a mean of 6.8 years. Eight were in primary school and 7 in secondary school.
Health care providers
There were 15 health care providers. Eight were clinicians with a tertiary level of education, and seven were nurse counselors. Five had a diploma in nursing, and two had secondary education with additional training in community health and HIV counseling. The majority (n=13) of the health care providers were females. Clinicians’ ages ranged from 25 to 53 years, with a mean of 33 years. The age of Nurse Counselors ranged from 27-64 years, with a mean of 47.8 years. Experience working in HIV care and treatment centers ranged from 3 to 15 years for nurses and 2 to 7 years for the clinician.
Parents/caregivers
We included twelve women and three men who had a mean age of 45.6 years (range 27–61) and lived with adolescents living with HIV as a parent (n=6) or primary caregiver (n=9) for a mean period of 9.3 years (range 3–15 years). In addition, nine possessed a primary level of education, five secondary level of education, and one had never been to school.
The analysis of the responses revealed five main themes related to the experience and mental health needs of ALWHIV in Kinondoni. These include Experience of symptoms, Unmet need services, Impact of the unmet needs, Ways utilized in managing symptoms, and Preferred Intervention. Table 1 below summarizes these key findings.
Table 1: Summary of findings
Participants descriptions
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Sub-themes
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Themes
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Feelings of not being worthy
Suicidal thoughts
Suicidal plan
Suicide attempt
Inability to stop thinking
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Cognitive symptoms
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Experience of symptoms
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Looking down
Getting upset easily
Feeling like carrying a heavy load in the head and shoulders
Feeling like living alone in a dark room
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Emotional symptoms
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Not interested in going out
Locking themselves inside
Crying for no reason
Not mixing up with others
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Behavioral symptoms
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Constant tiredness/ worn-out feeling
Looks like someone in deep thought
A feeling of body aches and pains
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Physical/ Somatic symptoms
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There is not much is done
Never seen the provision of psychological services
No formal assessment is done
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Inadequate management of psychological/mental health problems symptoms
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Unmet needs for services
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No one understands the feeling, so no one helps
The counselling given is not adequate
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Insufficient support from the providers
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Not wanting to take medicine [ART]
Having difficulties with taking ART
Better not to take ART
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Poor medication adherence
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Impact of the unmet needs
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Difficulties with understanding at school
Forgetting easily, it’s hard to study
Dropping of grades every day
School absenteeism
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Poor academic performance
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Feeling like it is okay to infect others
Not liking to use protection
Getting involved in substance use
Join substance using groups
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HIV and substance use risk behavior
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Prolonged sickness
Self-injury
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Physical related effects
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Spanking with a stick (caning) when misbehaves
Scolding those who get angry for no reason
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Scolding and punishment
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Ways utilized in managing symptoms
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Went to traditional healers but were not helpful
Gives her a garlic every time
Took him to a traditional healer for rituals
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Use of traditional natural remedies
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Efforts to go to church and pray
goes to obtain Holy Communion
Stepping on anointed oil or water
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Spiritual beliefs and prayers
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Moving her to a different environment
Giving chance for visiting relatives
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Change of environment
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Education to adolescents to realize symptoms of mental health problems
Talk to parents about psychological problems in clinics
Training for health care providers
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Education related to psychological/mental health
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Preferred Intervention
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Having a monthly club for mental health education
Need for individualized psychological support
Having continuous psychological support
Counselling may be helpful than drugs
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Sustainable psychological support
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Getting psychological support on top of ART
Making sure counselling is given during visit
Having combined clinic for psychological service and CTC
Medication alone doesn’t meet our mental health need
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Integration of mental health services and HIV care and treatment
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Experience of symptoms
Participants in this study reported several psychological/mental health symptoms as cognitive, emotional, behavioral, or somatic. Adolescents reported not fully understanding how best to express these symptoms to others. Still, they believe the problems make them easily irritated, look different from others, constantly tired, unable to perform tasks the way they wish, and have suicidal thoughts, as described by this 17years old female adolescent.
“…. Most of the time, you remain silent. You fight the situation alone. You can't explain because you do not know-how. The only thing they see is that you look different, or maybe you are easily irritable and not doing your activities as required, but most of the time, you are fighting the constant need to die and not being able to stop them[thoughts]”.
They further described how it feels to experience mental health or psychological problems. The description included constantly carrying a heavy load, thinking too much, having many thoughts, and living alone in a dark room as described by this 19 years old boy.
"It feels like carrying a heavy load on your head ….and pressing your shoulder constantly…it is very hard. Like living in a dark room, you have so many thoughts, and you can't stop thinking because you are different from them; no one will understand. You just stay alone”.
Caregivers perceived psychological problems, specifically "overthinking" and anger in adolescents due to being different from others due to their HIV status, mainly because other family members were HIV negative. They also described symptoms that they associated with psychological/mental health problems in the adolescents they live with, including looking sad/in many thoughts, difficulties with anger, sleep, appetite, isolation, and low energy and motivation, which they referred to it as laziness, as described by this parent with primary education.
"…He tends to be very lazy…angry and so harsh even for a minor thing or situation…he just gets angry…food; He will not eat he will leave it there. He has so much need to sleep. He sleeps a lot”.
Similarly, healthcare providers reported adolescents having many thoughts, looking sad, selectively mute, not mixing with others, having suicidal ideation, and crying as the psychological/mental health symptoms they see in those living with HIV. They believed the positive HIV status subjects adolescents to psychosocial challenges that lead to these symptoms. With 4-year experience working with adolescents living with HIV, this clinician described some symptoms, including physical complaints, and associated them with depression. She said,
“...Some of them may be mute and not talk to you, some cry a lot. When you are lucky that they talk, they say they have no reasons to live, or life has no meaning. For the younger ones, if they feel like you are disturbing them with questions, they tell you they have a headache, chest pain, or any other body part, but everything comes out normal when you order an investigation. In short, these kids reach a point when they lose hope to continue living. I can say they are very depressed.”
Unmet needs for services
None of the clinics reported conducting a formal screening for mental health problems. However, they reported offering counseling and advice to address psychological or mental health symptoms that adolescents present with. However, there were no formal sessions, and the content was said to be what the provider felt appropriate to the presented problem of the adolescents. They reported informally asking about mental well-being like probing about what might be bothering them if they see them crying, not taking their medication or when parents complain of behavior change.
“There are no guidelines on identifying or managing psychological or mental health problems…it's up to you as a provider to think outside the box when a parent complains. We mostly do adherence counseling and tell them not to overthink if you notice them crying, …but honestly, there is not much we can do" (Clinician, 5-year experience)
On the other hand, adolescents also reported a lack of mental health care and not feeling understood by health care providers. While some participants reported having never asked for help [because they did not know where or how to ask for it], some reported help-seeking. Those who did ask for help said not to have felt understood by the healthcare provider and that counseling services that they get contain advice that was not helpful, as narrated by this 19-year-old adolescent who shared her experience in help-seeking and the help she received.
“I explained my problem to him (having many thoughts, feeling different, anger, and a constant death image), and he told me, okay, take your medication on time, and avoid overthinking…aah, how do you prevent them [thoughts]? It's difficult…you can't; it didn't help”.
Consistently Adolescents reported that the advice or counseling offered had nothing helpful with psychological or mental health problems. Adolescents commented on how caregivers and health care providers use threats of their death to intervene in what they may see as a problem. This 18-year-old boy narrated his experience of having nowhere to seek help for psychological problems that interfered with his taking his ART medication and how it impacted care-seeking. In a quote,
“At home, you get shouted at and threatened…you come here [at CTC] it’s just being scolded and threatened about death. Today you talk to the doctor, tomorrow with a nurse, the other day to someone else, but no one understands you; you better keep quiet and not share your problems”.
Impact of the unmet needs
For adolescents living with HIV, psychological/mental health symptoms were reported to impact their engagement in HIV care, academic performance, social interaction, and overall quality of life. Adolescents said that psychological problems were one reason they would not take their medication. Adolescents' persistent symptoms (feeling sad, alone, worthlessness, loss of interest, and being different (due to living with HIV) have caused them to lose their will to live and hence no need to take ART medication. They described having intentionally stopped using their antiretroviral treatment as a suicide means.
“…I thought the easier way to die was to stop taking medicine…. it was better to die. I overthink, and I don't sleep at night just think and cry myself to sleep …you know if you do not take medicine, you will die soon”. (Adolescent, 19 years old).
Poor academic performance and impaired social interaction were noted by participants to be among the impacts of poor mental health. Adolescents reported experiencing difficulties with memory and concentration, which interferes with their academic performance and exacerbates other feelings like worthlessness and suicidal thoughts, as this 18-year-old narrates.
“… I feel alone...even when I learn, I don't understand. I fail! After all, why should I study…I am not worth anything…I get upset so much.…no one understands that it is so hard to concentrate on the book when you constantly think of how worthless you are. …not only do you despair, but you also want to die. That’s why you don't even take medicine. What are they for when the only thing they do is keep you suffering a miserable life?”
On the other hand, caregivers also reported that symptoms like sadness, isolation, losing hope, anger, and loss of interest in seeing their friends negatively affect academic performance and make it difficult for adolescents to take ART medication.
“Taking her medicine becomes a problem; she looks like someone in deep thought and becomes weak…. she misses school, and her performance is poor because she is not interested in studying…. She no longer visits her friend (Caregiver, secondary education).”
Furthermore, mental health problems and the associated symptoms like anger and despair were perceived by participants to increase sexual risky behavior and lead to the intentional transmission of HIV as this caregiver with a secondary level of education and lived with ALWHIV for five years explains.
"It is the despair, and they seem to be constantly angry. She knows her HIV status, and she gets a partner and does not use protection... it is like, let me do it, so he also gets HIV. If it is true that I have HIV; many people must be infected, too; she is determined to infect others; I think it is due to the emotional problems that she feels it’s okay to infect others too.” (Caregiver, primary education)
Providers from all clinics perceived suicidality and non-adherence to be one of the significant impacts of mental health problems in ALWHIV. Non-adherence was defined as not using ART medication as prescribed and failure to comply with clinic schedules as planned. This was reported as a challenge, mainly due to medication resistance that led to the need for second-line ART treatment. This nurse counselor with 15 years of working experience in HIV care narrates,
“…. Adolescents stop taking medication, and for that reason, most of them are on second-line treatment.”
Like caregivers, HCPs perceived psychological and mental health problems to predispose adolescents to the use of substances and engagement in sexual risk behaviors. Caregivers were more likely to report adolescents engaging in groups that predispose them to substance-related risk behaviors [the use of alcohol, cigarette, and cannabis], while health care providers perceived both substance and HIV and sexual risk behavior.
“… Some decide to drink alcohol, smoke cannabis, join bad groups, and engage in prostitution.” (Nurse Counselor, 7-year experience)
Ways utilized in managing symptoms.
Caregivers thought the symptoms were stereotyped behavioral problems and failure to accept their HIV status. Despair for HCP and caregivers struggling with managing mental health-related symptoms in adolescents is evidenced by using punishment to help the adolescents. Caregivers, for example, reported that healthcare providers help them discipline their children when they show behavioral symptoms (e.g., lack of motivation to study) or do not adhere to medication by warning them about the effects. Punishment (caning) and scolding ("Kumsema") were one of the ways used by caregivers to manage symptoms like poor appetite and crying for no reason, as stated by this caregiver with secondary education who described how she worked behavioral symptoms in a 14-year-old adolescent LWHIV.
“Oh (yes), the nurses used to warn her whenever we came here. They say… why don't you want to eat or take your pills? I also bought appetite-boosting medication, but it has not helped; the stick has helped; she is now eating when threatened or spanked with a stick. Her father helps with this…. spanking with a stick (caning) also helps when she misbehaves or shows anger tantrums for no apparent reason”.
Contrary to that, Adolescents perceive caregivers' punishment and providers' harsh verbal warnings as one of the maintaining factors for their problems. This 15-year-old boy describes his experience with corporal punishment.
“They make the problem bigger when they do not understand and beat you. You get tired, and no one understands… and if you don't work, you get hit… there was a day my uncle beat me so much because I could not eat… I was in so many thoughts and not feeling hungry. … that was the night I poisoned myself, but sadly, I ended up at [hospital]”.
Caregivers reported using remedies, utilizing social support, and offering gifts to the adolescents. They also use prayers even though they were unsure if church rituals, like "stepping on Holly oil,” could remove adolescents’ psychological /mental health symptoms.
"… It is just making efforts in going to church and d pray. She goes on the Holy Communion Day and treads anointing oil even though we are not sure if people are getting healed as we are made to believe”. (Caregiver, Primary education).
Caregivers further perceived the need to be educated/informed about ways to help adolescents with psychological/mental health problems. The need for a mental health care provider was also cited as this caregiver with primary education described her experience living with adolescents with mental health problems and HIV.
''It is very stressful for a parent who is raising these adolescents…. We need to know how to help…when she is sad, and I also have many things that confuse me. I find myself getting more confused... it is not enough. We need an expert for our children”.
Preferred Intervention
Participants recommended psychological services and preferred them over medication for mental health problems. Consistently participants suggested psychological services delivered within the HIV care and treatment centers and offered in individual sessions as the issues were perceived as “too private to be discussed in a group.” Adolescent participants recommended that existing youth clubs be improved and expanded to offer mental health knowledge and information. This 16-year-old adolescent describes his preference for psychological and mental health problems.
“We should not be taking medication every day [during appointments]. If possible, we should also be given appointments for psychological services. …you know these problems are too private. You cannot share them in those clubs or groups. The clubs may be general things like dealing with psychological problems; they would be more helpful than repeating the same things we already know”.
Similarly, caregivers thought psychological intervention to address common psychological and mental health problems would be an excellent opportunity for the adolescents. It was consistently reported that health care providers should include psychological intervention within the care package within CTC, and education and awareness programs should be provided in peer-led clubs. Participants also recommended a clear schedule so adolescents may understand when, where and who provides that service and how they can request or access it within HIV care and treatment facility.
There should be a special HCP who provides psychological counseling and should set dates like how they are given appointments for taking pills. It will be easy if our kids know who and which room to go for that service when they come” (caregiver, secondary education)
On the other hand, health care providers recommended training on assessing and managing common mental health problems in ALWHIV. Their experience indicates that not knowing how to help adolescents with depressive symptoms has left them helpless and feeling of having nothing more to give. They believed the training would increase their confidence and give them skills and competency to address common mental health problems and associated challenges. With six years of working experience as a nurse counselor for adolescents living with HIV, this nurse had this to share.
"The problem here is not seeing the symptoms ... we see them, we try to help them where we can, but the truth is, we often don't know what to tell the young person… we do not have the expertise. You feel helpless and tired since you have nothing to offer. You find a young person sick every day because he doesn't even take his medication as directed…. he has psychological issues, and some contemplate suicide; if you look at yourself [as provider], you don't know where to start…. We wish we could get training on what can be done apart from our routine…we need to do that to save our children”.