Exploring Professional and Carer Stakeholder Conceptualizations of Child and Adolescent Mental Health in Malawi Using a Contextual Co-Design Methodology: The Interplay of Pathology,the Supernatural,and a Pathway to Healing

Abstract

In Malawi, there is a high prevalence of mental disorders in children and adolescents. However, access to specialized care is scarce due to a lack of public policies, resources, and cultural factors. In this context, the aim of this research is to understand how child and adolescent mental health is conceptualized by key stakeholders in Malawi. The participants were 117 stakeholders (59 female and 58 male) involved with children’s mental health from different roles. They participated in workshops, focus groups, and open interviews. The data were processed following the steps of thematic analysis. The results show agreement between the different stakeholders in conceptualizations of child and adolescent mental health in Malawi, where symptoms and signs are not necessarily related to the Western vision, as well as the interaction between natural and supernatural sources in the genesis of mental disorders. Likewise, a pattern of help-seeking is described in which traditional healers stand out over hospitals. Finally, the results allow us to highlight the suggestions made by practitioners, policymakers, community leaders, and academics to improve access to and provision of mental health for children and adolescents in Malawi.

Keywords

mental health children and adolescents Malawi cultural differences

Mental disorders are the fourth most common cause of disability in Malawi after HIV, cataracts, and malaria (Bowie, 2006). The available evidence suggests a prevalence of mental health problems of between 14.4% and 28.8%, although variations in conceptualization and measurement mean these are likely an under-estimation (Kauye et al., 2011; Mwale et al., 2007; Udedi et al., 2014). Interacting factors include extreme poverty, infant mortality, a high prevalence of HIV/AIDS, and lack of available treatment. Notably, more than 50% of the population of Malawi is under the age of 20 years (United States Agency for International Development [USAID], 2016), yet specialist servicing for the mental health needs of children and adolescents is limited and particularly precarious.

Epidemiological data for mental health presentations in children and young people in Malawi is scarce. Among the 65,000 children under 15 years living with HIV/AIDS in Malawi (United Nations Programme on HIV/AIDS [UNAIDS], 2008), mental health problems are estimated to affect 31% often exacerbated by parental bereavement (Kalembo et al., 2019). Children struggling with the mental health burden of parental bereavement due to HIV in Malawi also often directly experience stigma (Macedo et al., 2018) which can both impede access to services and have secondary, cumulative, effects on mental health (Macedo et al., 2018). Recently, COVID-19 has exacerbated the mental health needs of young people in Malawi with long school closures and less visibility of mental health presentations (Makiyi, 2021).

Notably, there is no mental health policy or specialist inpatient service for young people in Malawi (Kutcher et al., 2019; Teivaanmäki et al., 2018)—this stands against the long-held global understanding that early intervention is key to the prevention of adult mental health burden, and the awareness that adult mental health models do not address the developmental needs of children and young people (Fusar-Poli, 2019; Kieling et al., 2022; McGorry & Mei, 2018).

There is a significant and escalating risk, in the comparative paucity of trained mental health practitioners to serve the needs of children and young people in Malawi and to address the stigma about mental illness that further perpetuates and compounds distress and obstructs access to services. In Crabb et al.’s (2012) Malawi study, beliefs about the causes of mental disorders were diverse: alcohol or drug abuse (95%), brain disease (92.8%), spiritual possession (82.8%), psychological trauma (76.1%), genetic or familial causes (47.6%), poverty (43.3%), or God’s punishment (21.9%) with many participants holding multiple beliefs spanning biomedical and spiritual explanations.

Udedi (2016) highlights that the scenario in Malawi continues to be complex and that the current public policy is not adequately addressing the needs of the population. The most relevant structural problems are lack of finance for mental health care (1.01% of the general health care budget for the full age range), lack of mental health professionals, and lack of training (with 0.01 psychiatrists and 0.22 psychiatric nurses per 100,000 people), and the centralization of mental health services in urban areas, despite the majority of people living in rural areas (Udedi, 2016).

The lack of access to mental health services, in the context of an escalating post-COVID need for services, highlights the need for an urgent modernization of current public policies, and the current research aims to inform the development of public mental health policy that is consistent with Malawian culture. A contextually responsive methodology, led by Malawian team members and co-designed with Malawian participants is prioritized to ensure local relevance, acceptability, and translation to practice (Marovah & Mutanga, 2023; Ndambo et al., 2023; Ramugondo & Emery-Whittington, 2022; Samuels et al., 2017).

In this context, the aim of this research is to understand how child and adolescent mental health and associated needs are conceptualized by key stakeholders working with children and adolescents and by community members who use health services in Malawi. We believe that this could be useful in the design of culturally sensitive public policies in Malawi.

Methods

Design

To meet our objectives of prioritizing contextualized methodology, a range of qualitative methodologies were used to gather information, for triangulation, from key stakeholders, including mental health professionals, academics, policymakers, youth and community leaders, and the parents or guardians of children and adolescents who are currently engaging with mental health services in Malawi. Our study adopted an approach that was emergent and responsive to the needs of different stakeholder groups as the study progressed, though in all cases, more relational and collaborative (than positivistic) methodologies were preferred (Shay, 2021). With parents/guardians and community stakeholders, more informal methodologies were adopted in the research tradition of story-telling (Archibald et al., 2019; Sharmil et al., 2021). With professionals, a more co-design and co-participant model was utilized—staged workshops provided opportunities for participants to discuss their responses to key issues in small groups and then distill key themes which were then presented back to the groups for iterative discussion and distillation. This process could be equally well described as a quasi-Delphi design or as collaborative story-telling and mapping (Atkinson et al., 2021). As per Delphi design, responses were reported and recurrently considered by participants within the context of the workshop session, until consensus was reached. These were robust and productive conversations supporting novel knowledge production. The themes distilled from these sessions provided the basis for community-based conversations with individual community members to verify or challenge these themes for sense-making from the point of view of lived experience.

Participants

To obtain a broad vision of the conceptualization of children’s mental health in Malawi, 117 adults (59 female and 58 male) involved with children’s mental health from different roles, were recruited. This includes 10 university academics in the field of mental health, 9 policymakers from the Ministry of Health, 10 nongovernmental organization (NGO) workers who supported children experiencing mental health issues, 44 health practitioners (health workers, traditional healers, and social workers) with expertise in local child and adolescent mental health services. In addition, it was important to complement and contrast the opinions of professionals with those of parents/guardians of children who have received health care in Malawi. Forty-four parents/guardians of children and adolescents who were currently engaged with mental health services were recruited. Participants came from both urban and rural settings across different districts of Malawi; Lilongwe, Blantyre, and the more rural area of Zomba. Figure 1 shows the number of people involved in each phase.

Figure 1.

Participant Flowchart.

Participants were not paid for participation; however, travel costs were reimbursed and a subsistence allowance for accommodation and meals was provided where required.

Data Collection

Data were collected in three ways to ensure a rich dataset and to support trustworthy inferences through triangulation: quasi-Delphi-informed workshops, focus group discussions, and key informant interviews with individuals or pairs. Before the focus group discussion and key informant interview, four workshops were carried out—one each for academics, policymakers, practitioners, and civil society organization (CSO) members—using a quasi-Delphi technique. Following the workshops, group discussions were held to allow families to add a service user perspective. Finally, key informant interviews were completed to add a greater depth of investigation from the themes generated from the workshop and group sessions.

Workshops

For each session, participants were divided into small groups of four to five people to discuss the same set of questions. The groups self-initiated PowerPoint slides to report back a summary of themes in short 5-minute presentations to the wider group. It emerged that it was important to participants that they then come to a broader consensus and so a quasi-Delphi design was co-designed with participants in which iterative cycles of discussion were undertaken within each workshop session, to generate themes. These discussions occurred in the spirit of co-researching; ergo final consensus was built up from smaller groups into the larger group. Of course, the standard Delphi method is a process used to arrive at a group opinion or decision by surveying a panel of experts, usually in iterative time-separated cycles (Okoli & Pawlowski, 2004). The “quasi” aspect reflects the within workshop cycles, in which people were developing, reviewing, and refining ideas as a participant collective. There was a dynamic and interactive discussion of the data as it emerged, and the reporting back occurred once all the viewpoints had been reconciled at each table. The tables shared their perspectives with “the room” which led to further review, reflection, and refining in vivo. This quasi-Delphi method then allowed the outcomes of the workshops to be shared with the interviewees and the other focus groups for further reflection, as discussed next. The research team felt this quasi-Delphi method fit the cultural context for engaging expertise as a participant collective.

Focus Groups

There were five focus groups with an average of 12 members per group (three groups for parents/carers, one group for health workers, and one for a combination of parents/carers, and two health workers). Each group lasted between 1 and 1.5 hours and was designed to explore more deeply the main themes highlighted during the workshops including feedback on the themes emerging from the workshops. The focus group had a wide structure with some questions focused on participants’ understanding of mental health and mental illnesses, perceived risk factors, and how people from the community access care for mentally ill children and adolescents. Discussions were recorded in the native vernacular (Chichewa) and were thereafter transcribed in English by fluent speakers of both languages.

Interviews

A total of 15 people participated in interviews lasting 30 to 60 minutes. These were open interviews, incorporating themes emerging from the workshops and focus groups, and focused on gathering information about barriers to adequate mental health care for children and adolescents, as well as examples of good practices that enable a good quality of life for children and adolescents with mental illnesses in either the community or at mental health facilities. Interviews were conducted in English or Chichewa depending on participant preference. All interviews were audio recorded and transcribed into English.

Ethical Concerns

Ethical approval was received from The University of Edinburgh and The National Commission for Research, Science, and Technology in Malawi (Ref No: NCST/RTT/2/6). Potential participants were briefed on the nature and purpose of the study and then asked if they were willing to participate. Informed consent was obtained either through signatures or finger-stamping on a printed form which was read out to participants. Confidentiality and the right to withdraw from the study were assured.

Reflexivity Statement

Fifty percent of our research team were born, live, and work in Malawi. Fifty percent are from continents in the global north and global south (Chile, United Kingdom, Australia). Team members acknowledge and reflected on biases inherent in their disciplinary training and cultural backgrounds as well as from their contrasting academic and clinical expertise in fields as diverse as clinical psychology, public health, nursing, global health, early childhood development, and disabilities. This multidisciplinary and practitioner span provided a depth of knowledge and clinical and research skills to guide methodological design and conduct interviews on this challenging topic, and particularly to facilitate the inclusion and empowerment of marginalized voices such as parents and guardians of children with mental health issues. In accordance with our commitment to acceptability and ethicality, our Malawian team members led all face-to-face data collection and have been given a final review on data analysis and the written form of this paper.

Procedure

Workshops were completed in advance of focus groups and interviews to allow familiarization with the context and emerging data before further data collection. Four workshops were carried out in Lilongwe from 7 to 10 May, 2019—one each for academics, policymakers, practitioners, and CSO members. Participants were recruited from contacts of research team members and expanded using snowballing sampling. To ensure the neutrality of the space, workshops were held in a conference room in a city hotel. Focus groups were held in communities in and around Lilongwe and Zomba from 15 to 31 May 2019 in health centers and schools. In addition to health practitioners, this sample included parents/guardians (please see Figure 1) recruited with the help of participants from the workshops. The final step included key informant interviews (KIIs) (see Figure 1)—13 were individual while the remaining interview consisted of a conversation between two participants and the interviewer.

Following data analysis, new workshop sessions were carried out with 42 participants from initial workshops in the Salima district on 17 June 2019. The main objective of this session was to gather feedback from participants regarding the combined results obtained. After the validation of the results, three dissemination sessions (n = 68) were carried out in the communities in Lilongwe and Zomba and included 36 men and 32 women from the local community who had not been a part of the data collection process.

Data Analysis

Generated data included spontaneous text-based presentations developed by workshop participants; field notes gathered during the workshops; and focus group and interview transcripts. All data were thematically analyzed using N Vivo software in an iterative, cyclical process following the guidelines for thematic analysis outlined by Braun and Clarke (2006). To avoid bias, different team members independently coded the same data and then compared the results to ensure the similarity of coding. In addition, a triangulation of the findings from the different sources of data was undertaken looking for points of thematic convergence and divergence. Given the main themes from the analysis were congruent and thematic saturation was reached, and to minimize repetition and redundancy, results were generally presented without differentiation of the method of data collection (workshop, focus group, or interview) neither differentiating the association between the participant and child mental health (policymaker, academic, health worker, NGO worker, parent/career). Where themes differed between groups, this was highlighted.

Results

Participants contributed ideas around illness, wellness, causal pathology, and symptoms, while also speaking of the need for healing. While most themes remained consistent and complementary across the different groups which added inferential strength to the results, the results also highlighted some important points of difference.

The Clinical Definition of Developmental Mental Health Disorders

Practitioners in this study described mental health as the way a person thinks, perceives things, how you cope with stress, and how he or she relates with others.

Within the practitioner workshop discussions, and the discussion with CSOs, there were several disorders discussed that are consistent with the so-called Western perspective of mental illness. These included anxiety disorders, mood disorders, attention-deficit hyperactive disorder, and posttraumatic stress disorder (PTSD). Perhaps equally important when considering cultural differences, a disorder considered to be significant was epilepsy:

Interviewer: Which one of the common mental health problems you are faced with both at home and the hospital among children? Participant: The ones common among children and adolescents are epilepsy, kukomoka komoka and misala [fainting and madness]. (Female Health worker, Focus group 3).

From a Western framework epilepsy is not considered to be in the same category as mental illness but was commonly discussed in this context by participants.

Public Conceptualizations of Child and Adolescent Mental Health: Points of Agreement Emerging From Triangulation

Three superordinate themes emerged around how the public conceptualizes child and adolescent mental health in Malawi; pathology of mental illness versus “perfect thoughts”; the root of the problem, and the pathway to healing and barriers. Within these superordinate themes fall several subordinate themes as seen in Figure 2.

Figure 2.

The Thematic Structure of Child and Adolescent Mental Health Conceptualization in Malawi.

Superordinate Theme 1: Pathology Versus “Perfect Thoughts”

Within the workshops, participants described people with positive well-being as possessing a well-functioning mind-set. In the local Chichewa vernacular, this wellness of the mind is referred to as “maganizo angwiro,” which translates in English as “perfect thoughts.”

Descriptions of mental ill-health were far more complex in terms of pathology, causality, and pathways to healing. In particular, participants reported that the public holds a less clearly defined understanding of mental illness, mental health, and mental well-being of children and adolescents. Representatives of CSOs and community leaders indicated that the general term “stress,” while not a formal mental health disorder, is a commonly used term when referring to children in distress, similarly the use of the description “amangoti mwana uyu ndi ovuta” (problematic child).

It was also felt that many people do not consider mental illness to be a “real” illness or disease as contrasted with medical diseases. Participants shared that there is a stigma around mental illness and that children and young people with mental illness may be considered dangerous by the general public, making it more complex to seek treatment. While talking about an experience with her child, one participant said:

We are beaten and stigmatized, calling us all sorts of names in a derogatory manner (kutukwanidwa kuti iwe wamisala, wobwerera kumanda iwe.) This hurts. I just feel like going somewhere. (Female guardian, Focus group 5)

This superordinate theme of “pathology” could be further categorized into a subordinate theme; signs & symptoms.

Subordinate Theme 1a; Signs and Symptoms

Adult participants mentioned outward behavior as a key indicator of mental illness in children and adolescents. With the onset of mental illness in a child, parents and guardians specified that they noticed significant behavioral changes:

When they are playing with friends, they just start throwing stones, but you don’t see what they are throwing at, they only see it themselves. That’s when we know, this is a mental illness. (Male guardian, Focus group 1)

Community participants in focus groups discussed physical symptoms, such as headaches, dizziness, and stomachaches, as indicative symptoms of a child’s mental illness. For example, in focus group 4, a parent/carer mentioned:

We believed cerebral malaria also leads to mental disorder; also—Epilepsy / Seizures; Treatment given to pregnant women with mental illness also affects the unborn and they are high chance that the child will be mentally ill; Delivery complications which affected the child’s spinal cord hence the child’s head becoming stiff.

Other participants described neck stiffness as one of the signs of the onset of mental illness. Of note, however, many of these symptoms are associated with the onset of epilepsy, which in Malawi is discussed as a form of mental illness.

Some participants indicated that people with mental illness might see things or objects that no one else can see. This can include distressing hallucinations, such as people running toward them in a threatening manner. For example:

The beginning of the illness was that when he sleeps, he could see wild animals, the wild animals would hit him and he could faint just like that. (Male guardian, Focus group 2)

Subordinate Theme 1b; Identified Disorders

Clinicians in our study shared that they often find it difficult to accurately diagnose children and adolescents. Within the workshop discussions, there were several disorders discussed that are consistent with the so-called Western perspective of pathology. These included anxiety disorders, mood disorders, attention-deficit hyperactive disorder, and PTSD. However, and perhaps important when considering a cultural difference, a disorder considered to be significant was epilepsy. From a Western framework, this is not considered a psychological disorder. Questions were raised as to whether this may accelerate misdiagnosis which has its repercussions.

The one common among children and adolescents is epilepsy. (Female Health worker, Focus group 3)

Superordinate Theme 2: The Root of the Problem

In the discussion around the causes of mental illness, several risk factors were identified by participants, including trauma, birth complications, and disease. However, the conversations mainly focused on two subordinate themes: supernatural versus natural causes (2a) and substance misuse (2b).

Subordinate Theme 2a; Supernatural vs Natural

A frequently cited public perception about the cause of the mental illness was witchcraft. When asked about the distinction between mental illness attributed to witchcraft and mental illness attributed to natural causes, participants indicated that if a patient is treated at the hospital and they do not get well, then they conclude that it must be caused by witchcraft powers or spells. Even when asked about what happens to children and adolescents, most participants give examples of adults—themselves or others they know—limiting themselves to pointing out that the same happens in the case of younger people. However, this can also be interpreted as a lack of visibility of mental health problems in childhood. For example, one participant stated:

. . .the difference is that the other one comes from magic the other one exists in the blood. [The signifier is that] when they are taking medication, the problem doesn’t stop. (Male guardian, Focus group 2).

One participant pointed out the following:

I was bewitched from my dad’s side to prevent me from getting married to a good man. They made me suffer from epilepsy ”Chifufu.” (Female guardian, Focus group 5)

Other participants held the view that although witchcraft was alleged to be the cause of their illness, it turned out that their illness was due to a medical condition. One participant stated the following:

When I got sick, when I went to a traditional healer and we were told it was my father who bewitched me, he wanted to kill me, they took me to different traditional healers but nothing changed then I started coming here to get medication and things have improved. (Female guardian, Focus group 2)

Subordinate Theme 2b; Substance Abuse/Misuse

A prominent cause identified by participants was drug abuse or misuse during adolescence. In particular, the use of marijuana, known locally as “chamba,” was considered a leading cause of mental illness; in this case, the mental illness identified is epilepsy.

When you are at school you copy the bad behavior of other friends like smoking marijuana [chamba]. So, epileptic disease comes because of not listening to parents’ advice, parents try their best to tell us how chamba is bad. Chamba gets mixed with your blood and you just see darkness in your eyes then you develop epilepsy. (Male guardian, Focus group 2)

Superordinate Theme 3: Pathways for Healing

Understanding the pathways parents and guardians take to seeking formal health care is vital to reduce delays in accessing treatment. This study explored the pathways taken in rural Malawi. Results across the entire study indicate that many parents and guardians construe mental ill-health as bewitchment, which appears to create a significant delay in seeking psychiatric treatment. Parents and guardians shared their experience of using traditional healers as the first port of call, with a shift later in life to acknowledging the first port of call should be the hospital. The church was mentioned as an alternative path for healing. This third superordinate theme of “pathways to healing” could be divided into two subordinate themes; traditional and religious faith healers (3a) and hospitals (3b).

Subordinate Theme 3a; Traditional and Religious Faith Healers

Some community members viewed mental illness as an issue that is not prioritized by families and communities.

. . .most people do not prioritize mental health illness and care is sorted out late. . . (Female health worker, Interview 11)

In fact, for some health workers, one of the obstacles to the provision of mental health services to children and adolescents in Malawi is the lack of knowledge about what mental health is. For example, an interviewee said:

From the demand side, sometimes women from the community, they don’t know that they are supposed to seek help because of culture or maybe or the delays or it’s very difficult to them to identify [mental health issues] maybe the child has a problem so they label the child a difficult child because they don’t know . . . (Female, Health worker, Interview 3)

The influence of the community also impacted how parents or guardians engaged in help-seeking behavior. The dominant view of mental illness as a result of bewitchment pushes the affected family toward seeking treatment from traditional healers.

When I was not helped by hospital treatment with my child someone advised me to take my child to a traditional healer but things did not change also my child was born in 1998 when I saw that things were still not improving then someone told me to come here at the hospital, so I started coming here seeking help in 2015, from that time till now my child hasn’t had a mental illness. it was here at the hospital where I got help, I was just delaying seeking help from Traditional healers. I got helped here at the hospital, my child is no longer ill. (Female guardian, Focus Group 1)

Most medical practitioners had the view that attribution of causes depended upon the beliefs of the individuals and the communities where they reside. When witchcraft was seen to be the cause, the first port of call was either the traditional healer or religious faith healers(church), as these two service providers are assumed to be able to deal with spiritual, demonic, or magical powers. A mental health worker stated:

I think it depends on people’s beliefs. Those who are so deep into tradition, when these things happen, they just feel somebody had a hand in it, they have been bewitched, especially if there were some quarrels over land. The first thing they will do is seek help from traditional healers. If they are believers in God, they will go to pastors, so, it’s just about people’s beliefs. (Female, Mental Health Worker, Focus group 3)

Seeking help from a traditional healer was acknowledged by many participants as delaying children and adolescents’ paths to appropriate intervention. Several participants explained that it was only after traditional healing methods had not been successful that these families would bring their children to the hospital. One participant explained the situation:

Most people I have provided mental health services in the community first sought help from the traditional healer until they failed. That is when they came to the hospital. (Female, Mental Health Worker, Interview 7)

Indeed, given the fact that in Malawi, there are different approaches to addressing child and adolescent mental health, one of the challenges was to establish greater coordination between the traditional healers, religious and medical personnel:

In terms of collaboration with traditional healers it’s not there, as well as religious and faith healers, but I would say, there is that kind of relationship among the hospitals and clinics but not necessarily with traditional and faith healers but within the public and private faith-based hospitals, there is a collaboration. . . I think a big challenge that is there is the issue regarding. . .. Traditional healers . . .. not wanting to refer to professionals. . . I think the challenge which has been there, is because we never had a chance to sit down and have like a coordination meeting or something like that in a collaboration meeting where we could understand each other and when we think the traditional healers can handle our cases; Because they are crucial because they are first carers. (Male, Health worker, Interview 2)

This challenge is also highlighted in the interview with two traditional healers

Our country that is lagging in collaborating the traditional doctors and normal doctors compared to South Africa, the Philippines and Asia in terms of providing access to mental health services. And I believe that if our pharmacies could adopt what other countries are doing like having traditional and modern medicine as well as doctors in one place. (Male health worker [traditional healer], interview 6)

Subordinate Theme 3b; Hospitals

In the focus groups and key informant interviews, it emerged that participants believed the first port of call should be a hospital, even though the opposite is observed. Ideal care is when participants have familiarity with successful medical treatment for mental health issues. It was not always the case, however reflecting on their experiences of help-seeking, they felt it was the better choice. For example, in one focus group, participants discussed paying money to many traditional healers yet seeing no improvement. It was only once they attended the hospital that they felt they received effective help and now acknowledged a clear difference between the two approaches. One guardian highlighted her experience:

My parents anaponda ponda mwambiri [visited several traditional healers] but it did not work until we went to Zomba Mental Hospital. My parents had believed that my sister was bewitched. (Female guardian, Focus group 4)

Interviewees also highlighted that hospitals must make more progress in promoting child and adolescent mental health.

Points of Difference: Priorities for Service Improvement Emerging From Different Specializations

Below we describe priorities for service improvement emerging from practitioners, policymakers, civil society, and academics.

Practitioner Perspectives on Improving Services for Child and Adolescent Mental Health

Practitioners in the study highlighted the need for specialist training in child and adolescent mental health and the criticality of early intervention:

We would like to highlight that this is the most important age group to help in the case of mental health treatment, prevention, and promotion. This is because should they grow, having suffered less of the impact of Mental illness, having known a lot about it and what to do and where to seek help and feel protected, then the next generation will have less stigma and associated problems. (Practitioner group 2, summary statement)

Practitioners highlighted that their colleagues often find it difficult to accurately diagnose children and adolescents.

Probably the problem is, as I said it’s the nature of the disease itself and even amongst the providers of other conditions and mental health. People are not aware of what mental health issues are, you find that sometimes, even when a patient comes to the facility and they believe this is a mental health issue, they will say no I don’t handle it, yet they are clinicians. They will push the case to somebody who has done mental health. So, I believe we can even advocate these issues to all clinicians, and let them understand what mental health is. We are likely to provide good services to our clients. (Male, mental health worker, Interview 1)

Practitioners also noted the challenges experienced by families—specifically, that families are resource-poor, hence, very busy, often with both parents or guardians working, meaning that children with challenges may not have as much care and support as they may need. They noted that parents and guardians often feel overwhelmed, and children often feel neglected. Moreover, parents and guardians are concerned about the stigma attached to seeking mental health services and the potential impact on the child and family. Practitioners highlighted the need for mental health training and awareness for staff in education, the criminal system, and churches, so that there is a wrap-around system of support for children and young people.

Practitioners also highlighted the need for more training, infrastructure, resources for medications, and offering a child-centered service. For example, interviewee 4 says:

We need to set up clinics that are friendly to children and adolescents. We need to set up the clinics and they have to be manned by people that know how to handle children and adolescents. (Male Health Worker, Interview 4)

As a complement, interviewee 5 add

. . .we have a very small number of professionals who are trained into primary health care when it comes to mental health; so, in most cases when they are such cases then children have less access to be assisted accordingly. Because . . . our focus is mostly on people who are from age 18 and above. So, for this age group that is 18, 17 to around maybe 12 it’s mostly sidelined because we do not have adequate experts in this field . . . (Male Health Worker, Interview 5)

Practitioners called for separate wards to work with children and specialist resources for child and adolescent mental health rather than relying on adult materials and resources. They also noted the lack of medication available for young people. Moreover, services outside the hospital system may be able to provide a more cost-effective, accessible, and developmentally responsive treatment. Potential examples included neurocognitive disorder-based programs to provide assessment and rehabilitative services, psychoeducation in community clinics, school health programs, outreach clinics, and youth clubs with a mental health focus.

At a policy level, practitioners highlighted the need for national guidelines and coordinated services driven by a task force. Reviewing laws was identified as critical—specifically, it was felt that defining what constitutes a “child” and decriminalizing suicide would assist in getting the right services to the right people. There was also an acknowledgment of the importance of working with traditional and religious communities to align perceptions of mental health with mental health services. Sharing success stories was considered key to making progress on developing openness to mental health issues and accessing services.

Policymaker Perspectives on Mental Health Reform

Policymakers indicated that missing out on early screening, diagnosis, psychosocial therapy, and treatment denies children and young people their right to health, which in turn denies them their right to learn, grow, develop, and live a respectable life. They report an urgent need for early intervention and prevention to avoid later costs of care in supporting advanced mental health conditions in the health system and the workplace. Policymakers indicate that while Malawi has made significant advances in mental health care provision, child and adolescent mental health remains a stigmatized and under-resourced area despite increasing demand. They note that mental health has an ill-defined and limited budget. Furthermore, that treatment continues to be primarily informed by adult psychiatric knowledge and practice. Policymakers contribute to the Ministry of Health’s policy brief (Udedi, 2016) and recommend that to improve the quality of services, mental health professionals must be de-stigmatized by increasing mental health awareness among health workers and advancing the career progression of those specializing in child and adolescent mental health. Furthermore, improving diagnosis and service access requires building on the availability of medication to integrate pediatric formulation of psychotropic drugs and psychosocial therapy into other multisectoral child and youth health services. They also noted that mobile clinics are not currently targeted toward child and adolescent mental health, though they seem effective in providing both clinical assessments and some forms of treatment to children and adolescents. Finally, intersectoral collaboration is imperative for maximum impact.

CSOs and Community Leaders’ Perspectives on Policy Development and Service Development

CSOs and community leaders shared the view of practitioners and policymakers that policy development and service design must be a collaborative project between key stakeholders to ensure local relevance and feasibility of implementation. CSOs and community leaders felt they have a lot to offer in policy and program design and a willingness to champion mental health for their communities. They also emphasized that client stakeholders needed to be represented, particularly members of marginalized groups (who may be harder to engage but are at greater risk of mental health issues); and that family members are important stakeholders in service design to ensure engagement in service utilization.

Overcoming the perceived disconnect between CSOs, policymakers, and academics was seen to be an urgent challenge to developing strong practices—CSOs and community leaders felt that their expertise had not been fully utilized. CSOs and community leaders also felt that training community leaders in mental health literacy would help to communicate key messages to communities; and that developing community-based programs would strengthen the fit between need and accessible local service provision.

Finally, it was strongly felt that contextual factors need addressing in service design. Specifically, economic challenges (resulting in long working hours for parents) and the collapse of traditional cultural practices were thought to contribute to mental health issues in children and young people. Fear and a culture of silence (relating to stigma) were identified as contributing to a lack of access to services. It was emphasized that successful service provision must be respectful of culture and context.

Academic Perspectives on Improving Services for Child and Adolescent Mental Health

Academics also took an ecological approach to mental health issues facing children and young people, discussing the importance of social and economic determinants of mental health such as family conflict, parenting issues, substance abuse, child abuse, bullying/peer pressure, stigmatization (e.g., albinism, mental health), lack of access to services, poverty/socioeconomic issues, nutritional problems, social media, and cultural and political issues.

The academic group addressed the importance of preventive approaches through education around early childhood development.

The academic groups identified challenges in developing a local evidence base to guide specialist practice. Specifically, conducting child and adolescent mental health research in Malawi suffers from a lack of funding for research; and a need for mentorship and capacity building. They recognized that strong research is needed to persuade and support policymakers to develop a stronger commitment to child and adolescent mental health—they felt this would enhance motivation for structural changes such as including child and adolescent mental health services in all health facilities.

The academic groups also saw research as key to informing the development of a specialist curriculum to train future generations of child and adolescent mental health practitioners.

Professionals should be knowledgeable of mental health issues- they should be able to identify, diagnose and manage mental health problems. (Academic group 1, summary point)

The academic groups highlighted that such a curriculum should extend beyond diagnosis and traditional therapies to include mental health prevention skills such as competencies in parenting training and awareness about child development needs, especially about adolescence; crisis management and general counseling (around issues such as death, puberty trauma); and also competencies in the training of life skills to address self-esteem and self-awareness as well as assertiveness training. They also highlighted the importance of building awareness of child rights, protection issues and services; and awareness of early childhood development interventions; as well as improved public and professional mental health literacy.

Finally, the academic groups highlighted the importance of collaboration between researchers, practitioners, policymakers, and the government to ensure a strong, connected, and integrated system.

Discussion

The objective of this research was to understand how mental health is conceptualized in Malawi, seen through the eyes of key stakeholders working with children and adolescents in Malawi and by community members who use these health services. Results indicated that from the participants’ view, the general public holds a less clearly defined understanding of mental illness, mental health, and mental well-being in the context of children and young people. Not unlike other cultures, the phrase “mental health” itself seems to be considered an alternative term for “mental illness” (Murphy & Leighton, 2019), though mental illness is also contrasted with the notion of “perfect thoughts” as an indicator of wellness. These findings are consistent with previous research and commentary which has acknowledged that understanding the notion of mental illness has been a contextual and complicated process in cross-cultural psychology—however, a consistent feature is an association with stigma, marginalization, and a significant care burden in low-resource settings (Patel & Winston, 1994; Wolff et al., 1990).

It is also evident that although traditional Western mental disorders are recognized in Malawi, there is also the inclusion of neurological disorders such as Epilepsy in this category which may influence perceptions of the nature of the mental illness. Notably, conditions related to neurodevelopmental disorders seem to have added a significant service burden on mental health professionals in Malawi. This is consistent with other studies that have found that in other countries in Sub-Saharan Africa, epilepsy is seen by both the medical community and the general public to be a mental illness, and one that has significant psycho-social implications and differential treatment needs particularly in childhood and adolescence (Baskind & Birbeck, 2005; Jilek-Aall et al., 1997). This has significant implications for service design and delivery.

It was also noteworthy that although questions were asked of the participants about child and adolescent mental health services, often answers given were more general in nature—there was no discussion of the developmental or evolving nature of mental health issues, and no consideration of a prevention or early intervention approach to mental health care. This may reflect the lack of visibility of children in mental health services and a lack of differentiation between child/adolescent and adult mental health services in Malawi. Mental health practitioners reported that often young adolescents may be placed in psychiatric care with adults. Kidman et al. (2020) found that adolescents in Malawi reported high levels of adverse experiences; however, the prevalence of adolescent mental health service research in Malawi is quite low.

Studies that have been conducted across a variety of health and well-being issues show that access to health services by adolescents can be diminished by a variety of factors such as a service delivery environment characterized by judgmental attitudes, a lack of privacy, and access challenges (Rosenberg et al., 2018). As a result of these barriers service utilization remains low; these dynamics are congruent with the previously mentioned studies on stigma and the findings captured in the superordinate theme of pathology. Results from this study highlight the lack of attention given to specialist child and adolescent mental health services (CAMHS) and the need for further investigation of the national public health sector. It should also be acknowledged that the developmental shortcomings of the biomedical model in the mental health care system makes it fairly reasonable that young people are not drawing on those services as preferred care. A conversation about prevention and early intervention models, or psychosocial care models may prove productive in reducing the long-term economic and personal burden of pediatric mental health care.

In the discussion around the causes of mental illness, several risk factors were identified that are in line with the more predominant psychiatric perspective (Stowkowy et al., 2020; Zarse et al., 2019). These included traumas, birth complications, and disease. However, drug abuse/misuse was the most frequently referenced cause of mental illness in this group despite the evidence for this being unclear (and recently challenged) in the broader literature (Botsford et al., 2020; Jones & McCance-Katz, 2019). In the context of epilepsy, the use of cannabis is even less clear and countered by emerging evidence of the utility of medicinal cannabis to treat epilepsy (O’Connell et al., 2017).

One of the topics most frequently discussed linked the causation of mental health problems with supernatural factors (demonic possession, spiritual influence, cursed by a witch). In fact, in this study, there was perceived to be a fairly consistent pattern of seeking help from people with a religious affiliation or traditional healing context. Only if this search for healing by alternative means or by faith was not effective, would they request help from psychiatric professionals. These hospital-based settings were viewed as the last port of call. Currently, it appears that in Malawi, there is a gap between people’s traditional beliefs and the supply of mental health services. This is consistent with previous research which highlights the challenges of psychiatric treatment in cultures that place significant emphasis on supernatural explanation (Atilola, 2015; Read et al., 2009).

A clear limitation of this research is that the voices of children and young people were not directly “heard”—this decision was based on advice from local stakeholders with respect of cultural traditions and parental authority. We hope that this study will pave the way for future studies to speak directly with children and young people to further understand the lived experience of mental illness and health in Malawi. Including the perspectives of children in research has proven powerful concerning issues of risk and disadvantage (Abma & Schrijver, 2020; Fouché et al., 2020).

Now that key thematic considerations have been identified it would also be fruitful to go deeper into the differentiation of opinions of different stakeholders, considering the type of mental illness and other important demographic characteristics (such as gender) to assist in refining perspectives on causal factors and relevant issues in treatment. Future studies would also be enriched by exploring the perspective of members of the general public who do not have experience in seeking help for mental illness.

The contextual approach to interviewing was a strength of our methodology—this approach supported flexibility and adaptation to individual characteristics of the groups, but necessarily meant that there was also variability in the type of data derived from the interviews, focus groups, and workshops. On balance, we prioritized the growing international call for more flexible and culturally relevant means of privileging local expertise in knowledge production, which supports more informal, conversational styles to overcome demand characteristics that limit reporting when there is a power differential between researcher and participant (Flicker & MacEntee, 2020; Gainsford & Robertson, 2019; Shay, 2021; van Stam, 2019). Furthermore, triangulation of several sources of data from different groups (professionals/parents/guardians, rural/urban) and using different methodologies (workshop, focus group, interview) helped strengthen inference through identifying points of congruence and discontinuity (Teddlie & Tashakkori, 2011). The limitations of each method were balanced by counterpointing findings with data gathered from complementary methodologies. The variety of formats in data collection allowed for different voices to emerge from different contexts along the same line of questioning preventing over-saturation. While most themes remained consistent and complementary across the different groups which added inferential strength to the results, the results also highlighted different priorities and perspectives from different groups that participated in the study.

Conclusion

Drawing together rich threads from conversations with mental health professionals, community members, and caregivers has highlighted a complexus of structural, political, economic, and cultural factors influencing responses to child and adolescent mental health in Malawi.

In shaping the path forward, it is important to recognize both overlaps and differences in conceptualisations of mental health in Malawi compared to western psychiatric traditions. Perhaps most notably, there is no clear demarcation between epilepsy and mental illness for community members or mental health professionals, and the prevalence of epilepsy is high. This is likely to be an influencing factor in perceptions of relevant causes and treatment of mental illness and should therefore be carefully considered in shaping policy development and strategic planning.

In some respects, not much has changed since Crabb et al.’s (2012) Malawi study. A decade on, this study has demonstrated that perceptions of mental well-being, mental health, and mental illness in Malawi tend to focus on pathology as it does in Western traditions, but the attribution of cause privileges both supernatural and substance-related factors. Community members consider witchcraft as a primary cause of mental illness leading to traditional healers being the first port of call for treatment. Witchcraft and supernatural forces are generally not considered within services based on Western traditions but understanding community perception in this regard is critical to developing successful public health strategies and to treatment planning. While there was ambivalence, at least a small number of mental health professionals felt that developing working relationships between traditional healers and mainstream mental health professionals is a potential avenue for progressing stronger wrap-around care for patients. In addition to supernatural causes, drug abuse/misuse is considered one of the major causes of mental illness among adolescents and young people. Education about substance use and mental illness may be a particularly important aspect of prevention planning.

Mental health professionals, CSOs, community leaders, and academics agree that there is much work to do in providing information to the public about the nature of mental illness, prevention, and treatment options—and that collaboration is key in policy development as well as service co-design and implementation. Caregivers of young people with mental health issues were also a potentially powerful voice emerging from this study and an untapped force for change in their communities. Their positive lived experience of the benefits of hospital-based and community-based mental health services makes them potentially powerful voices in the changing of community attitudes and addressing the stigma that prevents access to services. Caregivers are also potentially powerful advocates in the development of the Malawi mental health strategy for children and young people. A pragmatic view is critical to strategic thinking, policy making, and service planning.

Perhaps the clearest message to emerge from this study from professionals, community members, and caregivers, was the need for more detailed information about mental illness in Malawi and for the better sharing of that information. Research into local needs, effective local treatment, and prevention would assist caregivers and community health service providers to provide services and support that better meet the complex needs of clients, families, and communities. Such research will require a contextualized approach to methodology and local leadership in the research team to ensure that the studies are accessible to key informants from both formal and informal mental health systems and that locally relevant forms of knowledge production are accommodated. While it is clear that treatments based on a Western model are proving effective to some extent, it is also clear that most families do not access them and that models that have greater outreach as well as “face validity” will be key to community acceptance and service uptake. More facilitated conversations are needed—like those curated in this study. Inviting more voices to join this conversation will help—mental health professionals, CSO’s community leaders, and caregivers may benefit from talking to policymakers and to patients; drawing together a tapestry of what mental health means in Malawi and in doing so, creating a stronger community.

Footnotes

Authors’ Note

Charles Marley is also affiliated with School of Allied Health Science and Practice, The University of Adelaide, Adelaide, Australia. Action Amos is also affiliated with Pan African Network of Persons with Psychosocial Disabilities, Blantyre, Malaysia. Paul Mekani is also affiliated with Quality Management Directorate, Ministry of Health, Lilongwe, Malawi.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The project was supported by a grant from the University of Edinburgh College of Arts, Humanities and Social Sciences SFC Official Development Assistance Global Challenges Internal Fund.

ORCID iDs

Mark Hoelterhoff

Cristóbal Guerra

Emily P. Taylor

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