Stakeholders' perspectives and requirements on pain self-management for adolescents living with HIV/AIDS in Malawi: a cross-sectional qualitative study

Figures & data

Figure 1. Cross-cutting themes: Self-management of pain among adolescents with HIV.

Table 1. Characteristics of study participants.

Adolescent participants (n = 21)	n (%)
Sex
Male	11 (52.4%)
Female	10 (47.6%)
Mean (SD) age years	14.7 (1.8)
Range (in years)	17-Oct
Mean (SD) years on ART	6.2 (2.7)
Education
Junior primary school	7(33.3%)
Senior primary school	7(33.3%)
Secondary school	7 (33.3%)
Religious denomination
Presbyterian	8 (38.1%)
Roman Catholic	7 (33.3%)
Pentecostal	4 (19.1%)
Church of Christ	2 (9.5%)
Recruiting facility
Light house	16 (76%)
Nathenje health centre	5 (24%)
Caregiver participants (n = 20)
Mean (SD) age years	41.2 (12.8)
Sex
Female	16 (80%)
Male	4 (20%)
Do you have a partner?
Yes	12 (60%)
No	8 (40%)
Other children other than the participant
Yes	19 (95%)
No	1 (5%)
Mean (SD) number of children	3.95 (1.7)
Relationship with the adolescent
Mother	11 (55%)
Aunt	5 (25%)
Father	4 (20%)
Education
Primary school	10 (50%)
Secondary school	6 (30%)
Tertiary	2 (10%)
No education	2 (10%)
Religious denomination
Presbyterian	8 (40%)
Pentecostal	5 (25%)
Roman Catholic	5 (25%)
Church of Christ	2 (10%)
Source of income/occupation
Farming	11 (55%)
Business	4 (20%)
Housewife	3 (15%)
Employed/teacher	2 (10%)
Health Care Professionals (n = 22)
Male	14 (63.6%)
Female	8 (36.4%)
Mean (SD) age years	34.3 (5.1)
Recruiting facility
Light House	16 (73%)
Nathenje health centre	6 (27%)
Professional cadre
Nurses	8 (36.4%)
Counsellors	8 (36.4%)
Clinical Officers	5 (22.7%)
Social workers	1 (4.5%)
Mean (SD) years of health professional experience	9.6 (5.8)
Mean (SD) years working at the facility	4.7(3.4)

Table 2: Summary of main themes and quotes from study participants

Main Themes	Sub-themes and Description	Quote
1 Experiencing physical, psychological and spiritual pain	Participants reported experiencing “total pain” that is physical, psychological, emotional, social, and existential (spiritual) suffering.	Quote 1: “It feels like the intestines are tearing apart and it also feels like the belly button is being burnt” (adolescent 019). Quote 2: “My hands and legs feel weak and I also experience numbness, I do experience numbness in the legs ……s ometimes it is pricking in nature” (adolescent 020). Quote 3: “He started getting weak from end last year to beginning of this year ……s He also developed sores in the legs. Those were the ones that were giving him pain. He also started coughing, experiencing chest pains, fever, and when he came here (the clinic), he was asked to submit sputum” (caregiver 007). Quote 4 “Sometime back my parents were accusing me that I have a boyfriend so they said how can you do that with your HIV status. So that made me to have psychological pain” (adolescent 012) Quote 5 “Some of them who want to get married and have psychological and emotional problems when they think about this” (health professional 010). Quote 6 “Some of them think of committing suicide” (health professional 005). Quote 7 “Yes most of the times I get concerned about my future life that am I really going to be independent, why is it that I am the only child at home who is HIV positive as young as I am. And when I grow up will I be able to get married” (adolescent, 014) Quote 8: “Sometimes he thinks that he will die anytime soon but I encourage him that is not the end of your life” (caregiver 005).
	Effects of pain experience: All participants reported that pain had several negative effects among adolescents.	Quote 9: “Some of these adolescents do not stay with their parents, they stay with other relatives because maybe their biological parents died. We have had situations where such adolescents stop adhering to treatment” (health professional 007). Quote 10: “I am really concerned because when I am sick my friends are in class learning and what they learn that particular time, I don’t know that stuff, so I am very much concerned” (adolescent 004). Quote 11: “On his education life, he has always wanted to go to a boarding school but he fears that if he goes there his friends will be asking him why he takes medication on daily basis so that brings him back to go for a boarding school” (caregiver, 001) Quote 12: “Yes, he experiences difficulties with sleep, sometimes you just hear him groaning with pain from his room, when you go there and ask what is the problem, he will say am having headache or stomach pains” (caregiver, 002). Quote 13 “The impact is great … some of them may think of committing suicide and some of them even starting bad behaviours like prostitution just because they have unresolved psychological and physical pain and that comes back to us because if they engage themselves they also end up having a lot of problems” (health professional 005). Quote 14 “ … depending on the type of problems that these adolescents experience, some of them may affect parents for example some adolescents who may end up being addicted to the drugs may end up developing psychotic problems which also affected parents” (health professional 005) Quote 15 “It’s very painful to have a child in the family being sick constantly because even the other members of the family get affected with the child’s illness ……s on several occasion I have had to take him to the hospital which means being absent from work” (caregiver, 004) Quote 16 “I am very much affected by their pain because all the care we are providing is not yielding the outcomes that are intended. Because, if a person is in pain, if you are talking to them, even if you try distracting them, it doesn’t help. Even when you want to give other medical interventions, people tend to lose hope, they feel like they cannot get the help they need. This even affects us, because it makes us feel we are not able to help them fully, it makes us feel that we are failing” (health professional 008).
	Experiencing multiple losses: Adolescents reported of experiencing multiple losses due to diverse and long-lasting pain.	Quote 17 “ I am concerned … I wish if I could help him so that he can be hearing like any other children so that his friends should not be calling him such demeaning names. And even for his education, things which he would have understood become difficult for him because of the hearing problem” (caregiver, 008). Quote 18 “ … at times when she is sick as a parent (parent is HIV positive) you get concerned that you contributed to the suffering your child. On the social aspect I have also been affected especially with case of (name of the child) who was born with brain defects and as a result she does not act normally and even at school she’s not making much progress” (caregiver, 010)
2. Self-management approaches for pain and symptoms	Understanding of self-management: Very few adolescents understood the concept self-management	Quote 19 “Self-management involves use of drugs or any other form of treatment to manage symptoms of diseases” (adolescents 016). Quote 20 “These are interventions directed towards addressing symptoms and signs a patient is experiencing” (adolescents 017). Quote 21 “These are interventions aimed at minimising signs and symptoms a patient is experiencing” (adolescents 018).
	Discussing self-management at the health facilities	Quote 22 “Yes, it is discussed in the teen clubs, but not with the doctors and nurses” (adolescents 001) Quote 23 “Yes, we discuss self-management with our patients, we discuss causes of pain and how to manage it” (health professional, 021).
	Benefits of self-management	Quote 24 “Yes, it is a good approach, because there may be times when they may need help, but their parents or guardians are far. So, this may give them knowledge and skills on how to look after themselves” (health professional 008)
		Quote 25 “It would reduce our workload since it would help to ensure that we have fewer patients to attend to here at the hospital if they can manage to treat themselves at home especially if they have mild symptoms” (health professional 006).
	Preferred mode of delivery for self-management	Quote 26: “I like to be taught in adolescent groups because one of the participants may ask an important question which you wouldn’t if you were alone” (adolescent 018).
	Preferred topics/Topics of interest.	Quote 27 “How to handle psychological pain management so that I do not spend time worrying”. (adolescent 001). Quote 28 “Dealing with different types of pain. Describing all the types of pain, explain what does each one mean and how to deal with them” (health professional 008). Quote 29 “Abstinence, persisting peer pressure, six food groups, general body hygiene” (adolescence 019). Quote 30 “Topics should cover nutrition, disclosure and personal hygiene, reproductive health and safe sex practices should be included” (health professional 016). Quote 31 “The problems that they face like discrimination, stigma, denial because sometimes it becomes difficult for them to accept that they have the virus so there is a need for that information” (health professional 005). Quote 32 “You should teach us how to care and support these children because honestly we struggle to understand their feelings, the pain they face and how to make them happy despite being HIV positive” (caregiver 019).
	Preferred site where self-management should be provided	Quote 33 “In the home area it would be very tricky because, they might not have disclosed about their status to everybody while here (the clinic) they will all have something in common and a group is the best place for one to learn because of the interactions” (caregiver 010). Quote 34 “Here at the clinic because for me at home I am the only one who is HIV positive so if the Health care workers come at my home my brothers and sisters will be surprised of what is wrong with me because my relatives do not know that I am HIV positive; it is only my father and mother who know this” (adolescent 015). Quote 35 “For those that come from far location, it would be better for them to be taught in their community. But there is a concern. These adolescents would have to meet in their groups of HIV positive youth, which would compromise their privacy. So the best place for these adolescents is the clinic. But the challenge of long distance is still there for others” (health professional 007). Quote 36 “ I prefer at home: because it also provides an opportunity for both parents to be present and learn more ways” (caregiver 007).
	Preferred outcomes	Quotes 37 “Reduced psychological pain incidences and a reduction in the number of school dropouts due to AIDS” (health professional 022). Quote 38 “I would love if these can help me to stop thinking about things that bring worries in me. And also, to prevent becoming sick and also being able to deal with the pain that I experience” (adolescent 011). Quote 39 “Doing well in class because sometimes I don’t concentrate because I keep on thinking about my problems as a result I don’t do well during exams” (adolescent 010).
3: Current pain strategies among adolescents	Discussing pain management at the clinic facility	Quotes 40 “Each and every time we come here for teen clubs, nurses and doctors teach us causes of pain and how to manage it. Every time we come here at the clinic on teen club days we discuss pain relief management”. (adolescent 014). Quote 41 “I was having a lot of worries in the past but not now. In the past I was getting worried whether I will be able to finish my studies but when I started coming to teen clubs all my concerns have been addressed” (adolescent 018). Quote 42 “We discuss on causes of pain and its medical and non-medical interventions” (adolescent 015). Quote 43 “Yes, so these days I don’t talk about it with them anymore because she comes (meaning the HIV clinic) on her own. But when she complains about pain at home, I do encourage her to visit the clinic and inform health professionals about it and sometimes I see her coming home with pain medication such as Brufen” (caregiver 010). Quote 44 “All the time, when they come, in the clinician’s room or in the nurse’s room, they are asked whether they have any problem or if the experienced any problem. Any side effects, you know some of the medicines that they take which may cause pains. So, they are asked if there is any problem” (health professional 008).
	Using western and traditional medicines to relieve pain	Quotes 45 “When I go to sleep, I feel leg pains and when I tell my mother she gives me liniment to apply” (adolescent 010). Quote 46 “I take traditional medicine told by my grandmother and it works. Eating soot (by product of burning fossil fuels)” (adolescent 019).
	Using non-medical interventions to manage pain	Quote 47 “I feel better when I wash the eyes with cold water or rubbing the eyes” (adolescents: 003). Quote 48 “For headache my mother advised me that I should be washing my face with cold water from the fridge whenever am having headache and it works” (adolescent 015). Quote 49 “If I want to reduce my pain, I just try to think about positive things. Normally I just try to talk to someone. Talking to my mum and dad” (adolescent 009). Quote 50 “I do exercises. I carry something heavy or go jogging with my friends” (adolescent 019).