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

ABSTRACT

Malawi has one of the highest HIV prevalence rates (8.9%), and data suggest 27% pain prevalence among adolescents living with HIV (ALHIV) in Malawi. Pain among ALHIV is often under-reported and pain management is suboptimal. We aimed to explore stakeholders’ perspectives and experiences on pain self-management for ALHIV and chronic pain in Malawi. We conducted cross-sectional in-depth qualitative interviews with adolescents/caregiver dyads and healthcare professionals working in HIV clinics. Data were audio-recorded, transcribed verbatim and translated (where applicable) then imported into NVivo version 12 software for framework analysis. We identified three main themes: (1) Experiencing “total pain”: adolescents experienced physical, psychosocial, and spiritual pain which impacted their daily life activities. (2) Current self-management approaches: participants prefer group-based self-management approaches facilitated by healthcare professionals or peers at the clinic focussing on self-management of physical, psychosocial, and spiritual pain. (3) Current pain strategies: participants used prescribed drugs, traditional medicine, and non-pharmacological interventions, such as exercises to manage pain. A person-centred care approach to self-management of chronic pain among ALHIV is needed to mitigate the impact of pain on their daily activities. There is a need to integrate self-management approaches within the existing structures such as teen clubs in primary care.

Introduction

Global estimates show that young people aged 15–24-year-olds account for 27% of all new HIV infections (460,000/1,700,000) (UNICEF Data Dashboard, 2020). Malawi has one of the highest HIV prevalence rates in sub-Saharan Africa, with 9.2% of the adult population (aged 15–49) living with HIV (UNAIDS, 2020). In 2019, new HIV infections, among young people aged 15–24, accounted for 36% of all new HIV infections (12000/33000) in Malawi.

Evidence suggests that young people have poorer HIV treatment outcomes than adults, as they are more likely to be lost to follow up and less likely to be virally suppressed (Evans et al., 2013). Adolescence is an important time to lay foundations of good health and to self-manage chronic, in particular those with HIV. WHO argues that adolescents must participate in planning, monitoring and evaluating programmes relevant to them, not simply to be passive beneficiaries (WHO, 2014).

The Malawi HIV Impact Assessment shows a prevalence of 1.5% (2% females and 0.9% males) among 15–19-year-olds (Malawi Population-Based HIV Impact Assessment, 2016). A cross-sectional study of young people with HIV (aged four months to 16 years) referred to a palliative care clinic in Malawi reported that 27% experienced pain in the previous week (Lavy, 2007). Pain among adolescents is often undertreated, underreported, and unlikely to be routinely assessed (Robbins et al., 2013).

Pain and symptoms are associated with HIV infection due to the opportunistic infections and effects of treatment (Kourrouski & Lima, 2009), and are experienced throughout the disease trajectory (Peltzer & Phaswana-Mafuya, 2008). Pain and symptoms, among people living with HIV, have negative associations of both clinical and public health importance. Pain is associated with poor antiretroviral drug adherence (Harding et al., 2010; Hughes et al., 2004b; Sherr et al., 2008), and quality of life (Brechtl et al., 2001; Harding et al., 2012a; Holzemer et al., 2001; Hughes et al., 2004a), viral load rebound (Lampe et al., 2010), psychological distress (Marcus et al., 2000; Rosenfeld et al., 1996; Vogl et al., 1999), alcohol use, and intravenous drug use (Parker et al., 2014), psychiatric illness (Vranda & Mothi, 2013), sexual risk taking (Harding et al., 2012b), and suicidal ideation (Simms et al., 2011).

Patients spend only a few hours with medical personnel; most of their daily life is spent alone self-monitoring their condition, or with their family members (caregivers) who monitor the condition of the patient. Self-management interventions are thus a better strategy for improving patients’ outcomes (Mcgowan, 2012). Self-management intervention “includes the actions individuals take for themselves, their children and families to stay fit and maintain good physical and mental health, meet social and psychological needs and prevent illness and accidents, care for minor ailments and long-term conditions, and maintain health and well-being after an acute illness or discharge from hospital” (Department of Health, 2013).

HIV/AIDS is now managed using a chronic care model (Mitchell & Linsk, 2004; Schmitt & Stuckey, 2004), with the majority of care is offered outside formal health facilities (Swendeman et al., 2009). For adolescents, self-management support aims to assist and sustain the adolescent and their caregivers within their own life patterns and goals (Bodenheimer et al., 2002). Self-management interventions increase self-efficacy for self-care skills, enhance knowledge of management of chronic conditions, and improve communication between patients/carer and providers across various disease conditions (Lorig et al., 2006).

Our previous work among adults with HIV in Malawi showed that a brief pain self-management intervention reduced-intensity pain (Nkhoma et al., 2013; Nkhoma et al., 2015). The biopsychosocial model (Engel, 1977) guided the development of the intervention in targeting adequate and effective use of analgesia (biological), providing support and information to minimise distress associated with pain (psychological), and targeting the intervention at the level of the patient/carer dyad (social)(Nkhoma et al., 2013). HIV-specific pain intervention is needed as evidence suggests barriers to pain presentation and management for adults living with HIV (Baker et al., 2021).

It is unclear how they currently self-manage the effects of pain, and how it may be best improved. We, therefore, conducted a qualitative study to explore stakeholders’ pain self-management experiences for adolescents living with HIV (ALHIV) in Malawi and explore key components of a comprehensive and appropriate pain self-management approach that subsequently inform the design of an intervention on pain self-management. To our knowledge, this is the first study on pain self-management among ALHIV in Malawi, and the findings offer the potential to improve quality of life for ALHIV within limited health resources.

Aims and objectives

We aimed to explore stakeholders’ experiences on pain self-management practices and approaches for ALHIV in Malawi to inform future design of an intervention on pain self-management. The objectives were to identify appropriate elements of the self-management approaches from the perspective of ALHIV, their families/caregivers, and health professionals and to describe the acceptable model of self-management of pain suitable for ALHIV and their families.

Methods

Study design

We conducted cross-sectional qualitative in-depth interviews with adolescents, family caregivers, and health professionals.

Study participants

Participants were “patient-caregiver dyads” (i.e., ALHIV and their family primary caregivers) and health professionals working with ALHIV in primary care.

Inclusion and exclusion criteria for adolescents

Inclusion criteria were adolescents were aged between 10 and 17 years, aware of their diagnosis and attending an HIV primary care clinic. This was based on WHO definition of “adolescents” as individuals in the 10–19 years age group (World Health Organisation, 2014). We did not include those who were at least 18 years of age because our previous research already established models of self-management of pain among adults living with HIV in Malawi (Nkhoma et al., 2015). Adolescents were able to provide informed assent, including the ability to communicate in English or Chichewa (the local language in Malawi). Furthermore, we recruited adolescents, who were experiencing chronic pain for at least three months, in line with Merlin’s definition of chronic pain defined as a constantly and persistently occurring phenomenon despite treatment or medication (Merlin et al., 2013; Merlin et al., 2014), beyond the period of normal tissue healing (three months) and may be more related to nervous system changes than to actual tissue injury (Chou et al., 2009; International Association for the Study of Pain, 1986).

We excluded adolescents who were housebound and unable to attend primary care, those less than 10 years and above 17 years of age, those who were not aware of their HIV status, and those with acute pain.

Inclusion and exclusion criteria for caregivers

Primary caregivers were identified by the patient, and were involved in daily provision of care to ALHIV in line with the definition of caregiver “unpaid, informal providers of one or more physical, social, practical and emotional tasks. In terms of their relationship to the patient, they may be a sibling, parent, aunt, uncle or other blood or non-blood relative”(Harding, 2013). Caregivers were at least 18 years of age, able to give informed consent and parental consent for the adolescent participant must have disclosed HIV status to the adolescent participant and were able to communicate in English or Chichewa.

We excluded young caregivers less than 18 years of age and those who were not involved in caring for the adolescents on a daily basis.

Inclusion and exclusion criteria for health professionals

Health professionals (i.e., Nurses, clinical officers, social workers, and counsellors) with at least 6-month working experience at the HIV clinic/facility, and willing to give informed consent were included.

Setting

Participants were recruited at Lighthouse and Nathenje health centres in Lilongwe city, the central region of Malawi. Lighthouse is a specialised hospital with a primary care clinic, while Nathenje health centre is a primary health care facility.

Recruitment and ethical considerations

Potential adolescent and caregiver participants were identified and approached by clinic staff. We used the following sampling frame: experience of pain for at least three months, age, knowledge of HIV status, and being a primary caregiver. Clinic staff checked adolescents’ clinical records to identify potential eligible participants guided by the eligibility criteria. They then explained the study and provided information sheets to adolescents and caregivers, requesting them to contact research assistants if they would be willing to get more details and/or participate in the study. Research assistants also confirmed with the adolescents if they experienced chronic pain before proceeding with recruitment procedures. Information sheets were read aloud to the adolescent and caregiver participants.

Health care professionals were identified by the facility manager who introduced the study to them using the following sampling frame: professional cadre and period working at the facility. Potential participants were given an information sheet containing details about the study.

Potential participants thereafter communicated with research assistants who arranged a meeting to provide further details about the study and agreed on date and time to conduct the interview for willing participants.

Informed assent and consent were obtained from adolescents and caregivers, respectively.

For adolescents, primary consent was obtained from caregivers although the consent of the adolescent himself/herself was ultimately what informed continued participation in the study. All participants signed (or gave an ink thumb print) on the consent form. All participants were given a copy of the consent form to keep. Participants were given a drink and snack during the interview and transport reimbursements (approximately 10 USD). Ethics approval was obtained from King’s College London (HR-17/18-7122) and Malawi National Health Sciences Research Committee (18/07/2097).

Data collection

Semi-structured topic/interview guides were developed and iteratively refined. For adolescents and their families, interviews examined the perceptions of pain, tolerability, and attribution, past or current treatment for pain (pharmacological and non-pharmacological), preferred self-management interventions and outcomes in line with the biopsychosocial model (Engel, 1977), components, content, timing, delivery, duration, and implementation of self-management of pain. Health professional topic guides addressed usual practice, perceived patient and family needs, and optimal model of pain self-management in terms of goals, content, frequency and preferred outcomes.

Adolescents were interviewed separately from their caregivers to enable them to share information freely. All interviews were conducted within the clinic facility and audio-recorded, then uploaded into a password-protected computer kept at Kamuzu College of Nursing. Transcripts were pseudonymised.

Data analysis

Participants’ interviews were transcribed verbatim and translated into English (where necessary) before being imported into NVivo version 12 for thematic framework analysis (Gale et al., 2013b). This is the appropriate method to analyse qualitative data to compare within and across different groups within a study which seeks to examine prior health or policy concerns (Gale et al., 2013a). We developed a coding frame inductively on a subset of transcripts. KN developed an initial coding frame from patient transcripts (n = 2), caregiver transcripts (n = 2), health and professional transcripts (n = 2). This coding frame was shared with GM who also coded a similar number of transcripts. The study team reviewed the coding frame and differences were resolved through discussion. The final frame was agreed and KN coded all the remaining transcripts. A model of the coding frame was developed, with each theme and sub-themes clearly defined to ensure the internal consistency of each code. We have reported illustrative quotes for each theme, alongside study participant ID number to demonstrate reporting from across the sample breadth.

Following the framework analysis, we adopted a thematic analysis approach (Attride-Stirling, 2001) to generate a schematic depicting how main themes and patterns that emerged in the analysis aligned with the original questions. KN and GM developed an initial thematic network which was then adapted through iterations of feedback with the whole team. The final thematic network is presented in Figure 1.

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

Results

Characteristics of study participants

Table 1 presents the characteristics of all the study participants. We recruited n = 21 adolescents, n = 20 caregivers, and n = 22 health professionals. We recruited the same number of adolescents in terms of gender and education. Participants had an age range of 10–17 years, 52% percent were male. Participants had a mean age of 6.2 years on HIV treatment.

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)

The majority of caregivers were female (n = 16; 80%), mostly mothers of the adolescent participants (n = 11; 55%). Most caregivers relied on farming as a source of income to support their households.

The majority of health professionals were male (n = 14; 63.6%). We recruited the number of nurses and counsellors (n = 8; 36.4% per group). Health professionals had almost 10 years of work experience and almost five years working at the facility where they were recruited.

Main findings

We identified the three main themes: (1) Experiencing physical, psychosocial, and spiritual pain: under this theme, we identified two sub-themes: pain impacting social and daily life and experiencing multiple losses. (2) Self-management approaches for pain and symptoms: under this theme, we identified seven sub-themes: understanding self-management, discussing self-management, benefits of self-management, preferred model of self-management, preferred topics and content, preferred site of delivery and preferred outcomes. (3) Current pain strategies among adolescents, we identified three sub-themes here: Discussing pain management, using drugs and traditional medicines to manage pain, and using non-pharmacological interventions to manage pain. These themes and sub-themes are further explored next. Figure 1 summarises these themes and highlights the overall findings of this study in line with the biopsychosocial model of pain. Table 2 presents quotes supporting the themes and sub-themes.

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).

Experiencing physical, psychological, social, and spiritual pain

Adolescents reported experiencing elements of “total pain” that is physical, psychological, emotional, social, and existential (spiritual) suffering. They reported experiencing pain and physical symptoms such as chest pain, abdominal pains, coughing, headache, numbness, body weakness, diarrhoea, hunger, discharge from the ears, and sores in the mouth. Adolescents described pain as burning, pricking and clumping. Caregivers also echoed similar experiences (Quotes, 1,2, and3).

Some adolescents experienced psychological pain because of their HIV status, and thought that they would not enter into an intimate relationship or marry. Adolescents reported becoming depressed, worried, anxious, stressed, angry and always fearing for their lives (Quotes 4).

Health professionals attested that some adolescents were keen to understand if they will have their own family due to their HIV (Quote 5). Some had suicidal thoughts due to this distress (Quote 6).

Some adolescents reported feeling spiritual pain and did not see the purpose of living. This led some adolescents to lose hope in life. Their caregivers and health professionals also confirmed the terrible spiritual pain these young people were experiencing as they believed death was imminent (Quotes 7 and 8).

Effects of pain experience

All participants reported that experience of pain led to poor drug adherence. This was mainly due to the side effects of ART such as abdominal pain, vomiting, and peripheral neuropathy. Some adolescents, therefore, stopped taking treatment. This is common among adolescents who did not have a guardian to supervise them (such as those who lost their parents) or due to poor or lack of supervision from available guardians to monitor if they are taking drugs as prescribed (Quote 9).

Pain had effects on education following poor school attendance, absenteeism, lack of concentration, and poor performance. Some were even unable to attend boarding school because they needed supervision and monitoring by parents or close relations in taking medications, also because of fear of stigma as they did not want their friends to know that they are taking medication (Quotes 10 and 11).

Adolescents also reported feeling hunger, experiencing sleeping difficulties, and felt that life was worthless. These problems and concerns also affected their caregivers in their daily activities such as work (Quote 12).

Some health professionals reported that pain had severe negative effects among adolescents, for instance, some of them had suicidal ideation, and engagement in sex work due to unresolved psychological and physical pain. Others were engaged in drugs and alcohol abuse. These problems eventually had effects on the entire family (Quotes 13 and 14).

Caregivers were affected by adolescents’ pain. They either reported late for work or missed work shifts because they had to look after the sick child. Pain also affected siblings of the sick adolescents who were concerned because of constant illness. (Quote 15).

Pain experience among adolescents also caused negative effects among health professionals who were providing care to the adolescents (Quote 16).

Experiencing multiple losses

Adolescents reported experiencing multiple losses due to long-lasting pain. This included loss of friends and the associated playing because of limited socialisation opportunities, intellectual loss leading to lack of concentration in class, and loss of hope in life and life being worthlessness. Caregivers reported that some adolescents were called by names by their friends because they have hearing problems which eventually affected both the patient and the caregiver psychologically. Another caregiver was concerned about the hearing problem of his son in terms of his social life and education (Quotes 17 and 18).

Self-management approaches for pain and symptoms

Understanding of self-management

While most health professionals could ably define the term self-management, most adolescents and family caregivers could not describe or explain the concept. Adolescents explained it as taking care of self, managing signs and symptoms, and taking medication when in pain (Quotes 19, 20, 21).

Discussing self-management at the health facilities

It was evident from the adolescents’ accounts that self-management was rarely discussed at their care, with a few exceptions of it being discussed during teen clubs (Quote 22). Some health professionals stated that they discuss self-management with adolescents at the facility (Quote 23).

Benefits of self-management

Health professionals stated that self-management would be beneficial for them and their patients. In particular, staff felt it would assist the heavy workload that included with minor issues which could easily be managed at home with the support of family members. It could also be helpful to save transport and other costs since most of the patients live far away from the clinic. Moreover, adolescents will be able to take care of themselves at school where they are always alone without parents (Quotes 24 and 25).

Preferred mode of delivery for self-management

Some adolescents and caregivers preferred information leaflets, seminars, and group sessions to learn about self-management, with health care professionals or peers as facilitators. This was endorsed by health professionals who would prefer to facilitate group-based sessions. The majority felt they could learn better at the health facility in groups as a morale booster and to benefit from views expressed by others, particularly if the existing structures or approaches of teen club meetings could be adopted.

However, a minority of adolescents and family caregivers reported that they preferred individual face-to-face or one-to-one session delivered by health professionals (Quote 26).

Preferred topics/topics of interest

All participants mentioned that topics should focus on drug adherence, physical, psychosocial, and spiritual management of pain (Quotes 27 and 28). However, adolescents mentioned diverse topics that they preferred to be included in self-management training that were not directly linked to pain management for example nutrition/diet, social interaction, hygiene, communication skills, self-esteem, and life skills training (Quote 29). This was echoed by health professionals who want adolescents to learn about anger management, sexual relationships, reproductive health and teenage pregnancies (Quote 30).

For psychosocial pain, health professionals thought that young people should also learn about positive living, accepting their status, dealing with stigma because often they experience psychological problems (Quote 31).

Caregivers reported that they need information about how to support their children at home when they are experiencing pain (Quote 32).

Preferred site of self-management provision

Participants stated that self-management should be delivered either at the facility or at the community centre or at home. Most participants did not prefer home model because they will be seen by neighbours or other family members who don't know about the status of the adolescent being visited (Quotes 33, 34, and 35). Some caregivers preferred to receive the services at home so that they can receive the service together with the sick adolescent (Quote 36).

Preferred outcomes

For physical pain, participants wanted to experience reduced prevalence and burden of pain, pain interference with activities such as sleep, work, schooling, play, and improved drug adherence.

On psychological outcomes participants reported that they want to be free from stress, worry, anxiety and depression (Quotes 37 and 38). On social pain, adolescents reported that they want to concentrate in class and perform well during exams (Quote 39).

Current pain strategies among adolescents

Discussing pain management

While all participants experienced pain, a minority reported having discussed pain management during teen clubs with doctors and nurses. However, they were quick to indicate that whenever they get to clinics, the clinicians ask them if they have any problem and were being given medications depending on the problem presented. Some adolescents also alluded to the fact that teen clubs helped to relieve their psychological problems (Quotes 40, 41, and 42).

A caregiver reported that her daughter usually attends the clinic alone most of the time and she encourages her to discuss pain issues with health professionals (Quote 43).

Health professionals reported that in most cases they do ask about pain experience although their questions focused on the general health of the adolescents as a trigger to pain questions (Quote 44).

Using western and traditional medicines to relieve pain

The majority of adolescents reported the use of medicines obtained from health facilities or purchased from shops to relieve pain depending on the affected body part. These medicines included panadol, hedax, brufen, and aspirin for headaches, liniment for leg pains and Tumbocid for abdominal pain, piriton and topical lotions for the itching rash and pyridoxine for numbness of the legs. It was interesting that the use of traditional medicines in the form of soot (a by-product of burning fossil fuels) given by the grandmother was also reported to work in the management of pain. The minority felt that medical interventions were more effective than non-medical interventions (Quotes 45 and 46).

Using non-medical interventions

The adolescents reported several non-medical interventions for pain. These included walking, doing exercises/jogging, reading magazine, using cold water either drinking or washing the painful body part, playing or charting/talking/sharing experienced problem with friends, parents or health personnel, and watching TV (Quotes 47, 48, 49, and 50).

Discussion

ALHIV and pain report a high burden of physical, psychological, social, and spiritual pain challenges. This was reported by health professionals, caregivers, and adolescents. Pain was reported to have negative effects on their lives, interfering with their daily activities such as playing with friends, schooling, performance in class, and concentration in class. Participants also reported feelings of anger, depression, stress, and worry about the future. Some adolescents felt life is not worth living and had suicidal thoughts.

Pain also affected their family members (parents and guardians) who missed their work schedule or were unable to carry out other activities at home. This also affected other children in the family who were always anxious to see their siblings in constant pain.

In a cross-sectional study among young people who acquired HIV perinatally and HIV- children conducted in the USA and Puerto Rico, the prevalence of pain and psychiatric symptoms were evaluated. The study reported a higher prevalence of pain among HIV+ adolescents compared with their HIV− counterparts in the last two months (41% vs. 32%, p = .04), last two weeks (28% vs. 19%, p = .02), and lasting more than one week (20% vs. 11%, p = .03). Pain was also associated with worse psychological outcomes among the HIV+ cohort (Serchuck et al., 2010)..

In our study, adolescents missed some class sessions and were unable to concentrate during class sessions due to pain. This affected their performance in class and during examinations. This is consistent with other findings as a recent systematic review reported that HIV+ status had effects on educational attainments among adolescents. They missed classes because of medical appointments (Zinyemba et al., 2020). Thus, there is a need to formulate policies that adequately improve schooling outcomes.

Young people also experienced psychosocial pain related to stigma. They were unable to attend boarding school because they feared their friends will become suspicious when they see those taking ARVs and this would affect treatment adherence and ultimately the quality of life. The assertions by ALHIV in this study are consistent with evidence elsewhere including from studies in Rwanda and Nigeria that found that stigma and lack of privacy in settings like boarding schools were among key factors that negatively affected treatment adherence (Madiba & Josiah, 2019; Mutwa et al., 2013). Apart from pain, hunger was also reported to affect adolescents. This can be related to lack of food availability and due to the effects of ARVs. Food insecurity has also been reported to lead to poor drug adherence (Young et al., 2014). We, therefore, need interventions to address food insecurity which may improve drug adherence for ALHIV. Integrating nutrition and HIV treatment programmes, through interventions like providing nutritional support to people living with HIV, has been implemented albeit at a small scale in Malawi and not specifically targeted to ALHIV. There is, therefore, a need to integrate much broader food security interventions into HIV/AIDS treatment programmes to promote drug adherence among ALHIV.

Self-management was rarely discussed with adolescents during clinic visits. Many of them were not able to explain what the concept meant and how exactly to take care of themselves.

Inability of adolescents to define or describe or understand the term “self-management” signified that adolescents were not prepared to be independent which could be attributed to dependence syndrome and “handholding” culture and behaviours rendered even at adolescent clinics.

Self-management education among adolescents, during their clinic visits, is needed to empower young people. This will enable them to learn how to look after themselves to prevent experiencing pain or properly responding to it as it occurs. In our study adolescents and health workers cited teen clubs as an important platform to deliver a range of psychosocial support interventions for ALHIV. In Malawi, the Ministry of Health and partners have been scaling up teen clubs. Introducing education on self-management of pain as part of the package of care for teen clubs, therefore, presents an opportunity to improve the quality of life for ALHIV.

Data from this study show that ALHIV experienced “total pain”, reflecting the biopsychosocial model (Engel, 1977) that informed topics used to interview study participants. Although the biopsychosocial model is criticised for the weighting of contributing variables (Ghaemi, 2009) it is useful in a complex construct such as pain in HIV to explore appropriate and effective interventions (Nkhoma et al., 2015). Future design, testing and evaluation of self-management interventions should consider using person-centred care model which includes all the components of the biopsychosocial model including the spiritual aspect of care (International Alliance of Patients Organisations, 2007).

With respect to potential intervention design and delivery, participants reported that they are happy to have pain and self-management discussions during clinic visits and that non-pharmacological approaches are often appropriate. Participants reported that they would like to learn holistic management of pain that focuses on the management of physical, psychological, social, and spiritual pain. Effective self-management interventions for pain management among adults living with HIV may be delivered either online, face-to-face, or group-based consisting of booklet, leaflet, or manuals (Nkhoma et al., 2018). Our findings suggest that these approaches may also be appropriate if developed in adolescent-friendly formats. Adaptation of existing interventions offers great potential. Workshop-based psychoeducational interventions among adolescents and their families with chronic pain showed the potential to improve psychosocial outcomes (Coakley et al., 2018). One aspect to be noted in intervention design is that adolescents in our study wanted to avoid home activities to avoid stigma. It should also be noted that adolescents reported a desire to form intimate relationships but feared that this would not happen. They also noted that families would be highly critical of relationships. Person-centred care should ensure it supports this aspect of psychological and sexual development.

Strengths and limitations

This is the first study to explore views from ALHIV and chronic pain, their caregivers, and health care providers in sub-Saharan Africa. The collection of these stakeholders’ views gives important data for feasible and acceptable intervention studies. We designed the study, developed topic guides and analysed data using a well-established model of pain management in patients with chronic illness.

This work has some limitations. We relied on staff being aware of clients’ pain to enable recruitment, and the evidence suggests that awareness may be low. We also cannot generalise from Malawi to other African countries or regions. There may have been selection bias in those children with severe pain who drop out of care may not have been approached for recruitment.

Conclusion

This work presents the initial data needed to understand and better manage the dimensions of pain among adolescents with chronic pain and HIV. Through adolescents, caregivers, and health professional engagement, we identified suitable self-management interventions in terms of design, practical and contextual challenges and opportunities to optimise the potential for success.

We identified needs and preferences for self-management approaches from our participants to be taken into consideration when planning and designing feasible and appropriate self-management interventions for ALHIV. There is a need to test the effectiveness of self-management interventions for ALHIV using robust study designs. This will also inform subsequent integration, implementation, and rollout of self-management approaches in Malawi within the existing structures such as teen clubs in primary care.

Acknowledgements

The authors thank Joe Gumulira, Richard Bwanali, Happy Chipeta, and Owen Gangata for collecting data, conducting transcription and translation of the interviews, and for ensuring proper management of the data. The authors thank adolescents living with HIV, their caregivers, and health professionals for their enthusiasm to participate in this study. The authors also thank the management and staff at Light House and Nathenje health centre for allowing us to recruit at these facilities and for providing private space for data collection.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was supported by King’s College London Faculty Challenge Fund.