Participants (n = 11) were limited to black women aged 18–25years, including the interviewee in the pilot study. They had lost a close relative to HIV. Their mothers (n = 2), grandparents (5), aunts (n = 2), sisters (n = 1), and a brother (n = 1) were the relationships with people they lost. Five participants had to take care of their children left behind by the deceased., whereas six participants had their own children who had been cared for by the deceased. Five of the participants were uneducated and from the working class, while six were enrolled in school or a college.
Four themes emerged (Table 1). Overall this article will focus on the outcomes and will centre on one of them “Time-related circumstances define youth behaviour on how to manage themselves after the unexpected loss of a family member”.
Table 1: Overall themes of the study
Themes
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Time-related circumstances define youth behaviour on how to manage themselves after the unexpected loss of a family member
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Youths go through different grieving stages after the unexpected loss of a family member
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Managing difficult changes in daily lives of the next of kin following the unexpected loss of a family member
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Support measures for the next of kin following the unexpected loss of a family member
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The sub-themes of the theme in use are as listed below:
- Consequences of death while siblings are still at school (consequences of death where siblings are of school-going age)
- Suddenness of death triggers feelings of anxiousness due to the rapid shift in their role
- Unexpected reality that the deceased family member withheld information
- Developing unusual behaviour due to detachment from reality
When a terrible, unexpected death occurs, individuals who encounter it face significant disruption, and many may fail to adjust positively 29. The untimely loss of a family member is shocking and upsetting. Today's youth are subjected to a significant number of traumatic occurrences, including the occurrence of unexpected death 29.
Consequences of death while siblings are still at school
In this study few of the participants had to take care of school-going siblings following the death of a parent or relative. Children's interests and attitudes toward their education might alter as a result of the death of a family member. Siblings who have lost a family member may grieve constantly and refuse to attend school; in other circumstances, they may go to school but find it difficult to concentrate because of the grief period 3. As an outcome, these children will almost certainly do worse in school. Participants mentioned teachers saying that children were not handling their sadness well and were not interested in doing their homework 2. According to research by Ngesa, Tuikong, and Ongaro 27, children who experience sadness may find it difficult to concentrate in class or continue attending. These writers draw attention to the very real potential of diminished academic performance.
One of the participants related how his family's oldest brother lost all access to schooling and was forced to drop out at a young age in order to help his younger siblings. This participant clearly felt a sense of pity for her brother:
“My brother had to leave school, drop out, so that he can look for work so that he can then take care of us.” (P7, female, 22 years old, matric learner)
The psychological effects on siblings may cause some of them to leave school before they graduate 27.
A participant spoke of her own struggles to continue with schooling after the death of her mother, as her home environment and guardian that previously looked after her, changed to new circumstances:
“And I end up drop off the school then my cousin sister takes me, and I stay with her. She did everything for me. Like, she always talks to me that I can go to school so I can be like other children. But it was so hard.” (Sad face reaction.) (P8, female, 22 years old, municipality work).
The abrupt death of a family member and breadwinner forced siblings to leave home and school:
“Since we were living with her, she was the only old person we are living with. We were living with her in Eastern Cape, my mom was here in Cape Town. And, my siblings, my cousin and so on we were just children living with her. She was the old one. We were schooling”. (P5, female, 19 years old, matric learner)
Death affected school activities personally.
A participant lost concentration and felt inadequate, perceiving the loss as a personal failure:
“At school I couldn’t focus. I couldn’t go out with other children. I had a low self-esteem. And, (mmm) I look myself down on others. Ja”. (Body shaking, avoiding eye contact.) (P5, female, 19 years old, matric learner)
The psychological and emotional well-being of children is significantly impacted by the death of a parent 24. When orphans enter school, they may frequently feel inferior to their classmates and perhaps endure unfair treatment there 24.
After the loss of a loved one, poor academic performance is linked to mental health conditions like PTSD and signs of despair 25. Malizia 25 discovered that people experiencing bereavement have numerous modifications. Substance misuse, guilt and shame, harmful behavior, interpersonal issues, stress, and sadness are examples of these changes.
It was evident from the foregoing that positive attitudes were required to manage the issue.
A participant exhibited bad behaviour changes at school and lacked concern about repercussions.:
“I didn’t cope at school (takes a deep breath). And one of my teachers noticed that I’m not the same. I am not concentrating at school. I’m careless. And, I ended up to be a disturber, by disturbing other children in the class. I am not listening. I am not doing my homework. I don’t care anymore”. (Sad face with tears in the eyes.) (P10, female, 25 years old, college student)
Skovdal 35 asserts that a child or young person who has experienced HIV/AIDS-related issues is likely to have low educational achievements. These children struggle to focus in class, which lowers their grades, causes them to miss class frequently, or even quit school altogether. Losing a family member or relative can bring about unpleasant obstacles in life, especially for those who are left behind in terms of connections and education.
According to Akard et al. (2019: 81), children who lose a parent have quick changes in attitude toward school and a lack of respect for others, which causes conflicts and disturbance in the family.
Suddenness of death triggers feeling anxious due to the rapid shift in their role
All family members are impacted by a loved one's death, and many of them experience worry and panic due to the unknown 20. To control the issue, constructive thoughts that were behaviour-focused were required. It is unusual to suddenly go from being a dependent family member to needing to support oneself and raise children who are not one's own.
One participant took up increased obligations alone:
“Yes, so my worry was that what are we going to do with these two children. Because we are all staying in one house. So, ja. I was very worried about her children mostly”. (Sad face.) (P6, female, 23 years old, health promoter)
Family routines and rituals terminated abruptly and evoked emotional reactions, as the departed individual had numerous background roles:
“It was tough. It was tough. Because we benefit to her. She was the one who buys food for us. She was the one who always play a role of being a parent because we don’t have mom and we stay with our father. So, she was having four kids. She was the one who always grocer, pay for TV licence, always do everything when things are going down and up. She always did it well but now we can’t do anything”. (Praises the sister and looks sad). (P4, female, 24 years old, grade 11 learner)
Family members frequently lose hope and worry that they will not survive after a traumatic occurrence like the death of an important family member. They feel as though their sense of identity has been "shattered," and they doubt their capacity to take care of themselves in a world without the bereaved 19.
The feeling of fear was quite overwhelming for some.
“Okay … aaaah … to be honest, mostly I had fear”. (P1, female, 24 years old, pharmacist assistance)
One youngster was unsure of her abilities to financially and emotionally support her siblings:
“I feared that … uh … because my mom is no longer around I may not be able to give the kind of support that she would have given to my siblings. That is supporting them financially, emotionally”. (P1, female, 24 years old, pharmacist assistance)
According to research by van der Mark, Conradie, Dedding, and Broerse 40 women who are the primary breadwinners and reside in underdeveloped areas struggle to maintain their siblings' needs while still paying for school and groceries.
Another participant spoke of feeling shocked about sudden loss:
“So, we were very shocked”. (Facial expression of disbelief.) (P6, female, 23 years old, health promoter)
People who are in school have a harder time dealing with loss. Students frequently experience shock at their sudden freedom as well as dread, perplexity, and pressure 44. Depressive disorders are also present. According to Haravuori, Suomalainen, and Marttunen 18, depression brought on by traumatic experiences has an even greater impact on a person's quality of life in children than post-traumatic stress disorder.
Unexpected reality that family member withheld information
The realization by family members that the deceased kept their condition hidden, so their death came as a complete shock, is one element of the sudden death of a family member. Many people choose not to reveal details about their health situation. Choosing who to reveal to, where to disclose it, and when to do so is difficult 34. A participant was disillusioned and sorrowful about the unexpected death of her brother, especially after the medical staff informed her about his health status:
“So, by the time he was sick I didn’t realise that he was HIV positive. He didn’t tell any family member that he is HIV positive. Not unless my sister went to the clinic by the day he passed away to search how was he sick, to search about his health history. So, they tell my sister that my brother had HIV/AIDS. So, he defaults to the treatment”. (Sad face). (P10, female, 25 years old, college student)
Another participant was shocked by the deceased's careless behaviour in hiding her illness and not taking her medication:
“She hides it from us because she didn’t tell us that she was HIV positive. She was not doing anything. She was just coming when she feels like to come to the clinic. So, she wasn’t taking her medication correct”. (Shakes head). (P6, female, 23 years old, health promoter)
One of the most effective ways for someone with a disease, such as HIV/AIDS or TB, to make sure they follow their treatment plan is to disclose it to others 28. The deceased family members' secrecy may prevent them from being held accountable for properly taking their medication, which led to their deaths when they did not take it as prescribed.
A participant was shocked and angry that the deceased hid her illness and neglected treatment:
“The reason why we were shocked is that she hide it from us that she was HIV positive. We only found out when saw the pills and asked the doctors, and they told us, “No, this person was HIV positive. And she was defaulting, that’s why she passed away”. (Angry face). (P6, female, 23 years old, health promoter)
“She could have told us that she was HIV positive”. (Calm voice). (P6, female, 23 years old, health promoter)
HIV status secrecy is still a major issue in many areas. HIV-positive individuals frequently struggle with the conflict between their need for privacy and worries about stigmatization. According to research, it is crucial for people to let their loved ones know if they have HIV 4. Regardless of their right to privacy, people are more likely to follow treatment guidelines if they share their health status 4.
The sharing of an individual's HIV/AIDS status to family and friends offers several advantages, according to the Centre for Disease Control for HIV Basics 46. Increased adherence to HIV/AIDS therapy is one of the main advantages.
Developing unusual behaviour due to detachment from reality
A detachment from reality and numerous mental health issues, including post-traumatic stress disorder (PTSD), which includes sadness and anxiety, can be brought on by exposure to terrible life experiences 18.
The results showed that individuals' behaviour had changed in ways that were connected to stress and anxiety, panic attacks, and negative thinking.
A participant described her unreasonable ideas and anxieties over upcoming obstacles:
“When you stress, you think stupid things because of, you know that the person that died is a breadwinner at home. You think now where are you going to get the things she used to buy for me. It’s about that. You are going to suffer more, because she was a breadwinner”. (Strokes the chin). (P7, female, 22 years old, matric learner)
Many participants could not stop thinking about the incident and its aftermath:
“Eish, I was panicking then, I was panicking, and I was depressed. I was thinking all the time that … oohh … I was thinking all the time”. (Bites nails). (P8, female, 22 years old, municipality work)