Access to relevant health information on mental illness is crucial for informal caregivers responsible for clients with mental illness to ensure their relative’s health improves (Chadda 2014). In the field of mental healthcare, the importance of caregivers in providing support to individuals with mental illness is crucial and cannot be overstated (Mithesh & Sheelam 2023). However, a critical gap exists in our understanding of the information-seeking behaviour exhibited by caregivers as they navigate the complexities of providing care for their loved ones with mental health challenges (Hargreaves, Sbaffi & Ford 2023). Although formal caregivers are starting to realise how important it is for informal caregivers to have information, there is not enough research that has been conducted that investigates what caregivers need, want and find difficult when they try to find information about mental illnesses (Peterson et al. 2016).

The study conducted in Germany found that 26% of German adults in the sample had searched for information on mental health, with the majority of 73% of all seekers in the sample having searched for information for others (Freytag et al. 2023). The study also found that there is a significant gap in the availability of information about mental health and illness in Germany, which leads to a high demand for information among the public (Freytag et al. 2023). The study also found that there is a lack of awareness among the public about the availability of mental health services and resources (Freytag et al. 2023). The study conducted in America by Lagoe and Atkin (2015) aimed to identify factors that may influence health information-seeking behaviours among adults. The study found that health anxiety mediates the relationship between neuroticism and information-seeking. In addition, internet efficacy was identified as a mediator between internet experience and information-seeking. Furthermore, the study also found an association between health anxiety and the use of online support groups. The authors suggest that these findings have implications for public health campaigns and interventions aimed at improving mental health literacy and reducing stigma associated with mental illness (Lagoe & Atkin 2015). Understanding the information-seeking behaviour of caregivers is crucial for developing targeted interventions and support systems that can enhance their ability to provide effective care and improve the overall well-being of both caregivers and the individuals under their care.

There is limited information and studies carried out in Malawi on information-seeking behaviour of informal caregivers of clients with mental health illnesses; hence, a study was performed by Thindwa, Chawinga and Dude (2019) investigated the information needs and behaviours of security studies students in Malawi at Mzuzu University. This study is different from the other studies discussed above as it was not targeting the caregivers of mental health illnesses, but it has shown how seeking information behaviour is important and has shown the barriers that may affect the process of seeking information. Therefore, the aim of this study was to explore the information needs and information-seeking behaviour of caregivers of clients with mental illness at Neno District Hospital. Specifically, the study focused on the information needed by caregivers of clients with mental illness, the sources of information of caregivers of clients with mental illness and barriers to the access of information by caregivers of clients with mental illness in the Neno district in Malawi.

This study was guided by Wilson’s Model of Information Behaviour, originally proposed in 1981 and later improved in 1996 and 1999, as the underlying theoretical basis. Wilson’s model offers a good approach to understanding how individuals recognise a need for information, initiate information-seeking activities and interact with various sources within a given context. It is particularly useful in analysing the dynamic processes involved in information-seeking among non-professional caregivers operating in a rural setting (Figure 1).

Wilson (1999) conceptualised information behaviour because of a perceived information need, which activates a search for information influenced by contextual factors such as the individual’s psychological state, role in society, environmental conditions and access to resources. The model further contains intervening variables, such as education, culture, literacy and access to infrastructure and activating mechanisms, such as stress, motivation or anxiety, which influence both the initiation and effectiveness of information-seeking behaviour.

In the context of this study, caregivers of clients with mental health illnesses in Neno district in Malawi face multiple stressors that serve as activating mechanisms, prompting them to seek information about the nature of the illness, medication management and support services. Their reliance on both formal information sources, such as psychiatric nurses and informal sources, such as the clergy and traditional leaders. The barriers to accessing information are addressed through Wilson’s concept of intervening variables, such as low literacy, stigma and limited access to mental health services. Wilson’s Model of Information Behaviour informed the development of the interview guide by shaping questions around the model’s core components: perceived information needs, sources and strategies for seeking information, barriers (intervening variables) and coping mechanisms (activating mechanisms).

The theoretical framework derived from Wilson’s model was adapted to reflect the rural Malawian context, where health literacy, cultural beliefs and structural inequalities intersect to shape information-seeking behaviour. As such, the model provides a useful lens through which the interplay between individual motivation, social context and barriers can be critically analysed (Case & Given 2016; Wilson 1999).

The researchers extend the model by incorporating context-specific mechanisms, such as the role of traditional and religious leaders as trusted intermediaries who trigger and legitimise information-seeking. The culturally embedded structures operate alongside formal healthcare channels. This calls for a refinement of the model to include community authority figures as catalysts, particularly in low-resource African settings, such as rural Malawi.

According to a study conducted by Bangerter et al. (2019), informal caregivers require a significant amount of knowledge and awareness about various mental health-related information to provide adequate care to their loved ones. Specifically, caregivers need to be aware of the medications their loved ones are taking, their costs and insurance coverage and the different health conditions they may be facing. In addition, informal caregivers need to have a good understanding of how the healthcare system works, including navigating healthcare providers, medical appointments and insurance claims.

Hart et al. (2020) highlighted that the healthcare industry experiences fluctuating information needs for various reasons, such as the caregivers’ desire to make informed decisions, demographic considerations, like age and gender, and the need to obtain relevant information. Hence, it is common for caregivers to initiate an information-seeking process to fill any gaps in their knowledge. According to a study conducted by Lilleheie et al. (2020) on mental health nurses from two large mental healthcare organisations in the Netherlands who provided care to older community-dwelling or hospitalised clients with a severe mental illness and their informal caregivers, it was found that the top priority for caregivers is information regarding diagnosis, hospital visits, as well as treatment and services. This indicates that there is a pressing need for healthcare providers to provide careful attention to the information needs of caregivers to assist them in making informed decisions for their loved ones.

A study conducted in Hamburg, Germany, by Liebherz et al. (2015) on information and decision-making needs among people with anxiety disorders found that relatively few caregivers and clients dealing with mental illness seek out mental health services. Additionally, even for those who do initiate treatment, many fail to receive follow-up care. One possible explanation for this trend may be the lack of information available regarding symptoms, diagnoses, severity of conditions and available healthcare services and treatment options. Having access to sufficient health information is crucial in promoting patients’ self-management, preventing symptom exacerbation, informing treatment decisions and ultimately improving treatment effectiveness.

A study carried out by Aass et al. (2022) on patients suffering from mental illness and family members in community mental healthcare services in Norway found that many clients with mental illnesses depend on caregivers and friends in their daily activities. Therefore, caregivers must possess comprehensive information and understanding of the outcomes of the disorder and the challenges that may arise during the treatment and care of their clients. A qualitative study conducted by Sharif et al. (2020) in Saudi Arabia on family caregiver experiences of burden and coping while caring for relatives with mental illness has shown that involving caregivers in the planning and care of individuals with mental illness has a significant impact on their mental health. Even brief involvement of caregivers has been reported to enhance health and recovery, reduce the risk of relapse and increase family well-being (Sharif et al. 2020). In a related context, a study in Zambia by Mwape, Sikwese and Kapungwe (2010) explored health providers’ views about mental health integration into primary healthcare. The study found that mental health caregivers sought similar information on diagnosis and treatment but faced additional challenges, such as long travel distances and limited access to trained health professionals. It suffices to mention that such problems are also encountered in the rural Malawian setting. The above studies have also revealed that the more information family caregivers have, the better they can comprehend the illness and provide effective care.

Studies on the information-seeking behaviours related to mental health of parents and caregivers have explored various channels used to obtain information, including consulting with physicians, searching the internet and asking friends for advice (Singh et al. 2022). Despite the abundance of information available, informal caregivers tend to rely primarily on personal communication with professionals as their main source of information. A study conducted in the UK revealed that health professionals were the primary source of information for parents of children with disabilities with physical and learning difficulties, followed by other parents and voluntary organisations (Forcheron et al. 2023). Similar findings have been reported in other studies (Aass et al. 2022; Sharif et al. 2020; Singh et al. 2022). Caregivers also use mass media, such as television, radio and newspapers, as supplementary sources of information, although these are generally considered less reliable compared to direct communication with healthcare professionals. Comparable patterns have been observed in Zimbabwe, where Chibanda et al. (2016) reported that caregivers of people with mental illness primarily sought information from properly trained and supervised lay health workers (LHWs) in primary care. They also relied on lay health counsellors trained through the ‘Friendship Bench’ programme. This means that community-based interventions can complement formal health systems in delivering reliable information.

Access to mental health information remains a major challenge for informal caregivers, especially in low-resource settings. Several studies highlight that caregivers often encounter logistical, psychological and social barriers that hinder effective information-seeking. For instance, Baker and Naidu (2021) found that ineffective communication from clinic staff limited caregivers’ ability to access timely and relevant information. Nxumalo and Mchunu (2017) further found that caregivers may experience stigma by association. This can lead to social withdrawal and reluctance to seek information openly. Such stigma may reflect the negative emotional experiences of the people they care for, including shame and self-blame. Peterson et al. (2016) also emphasised the lack of targeted information support for caregivers, especially in going through mental health systems and understanding clinical terminologies. The barriers are particularly critical in rural contexts, where low literacy levels, limited access to digital resources and a shortage of mental health professionals exacerbate the information gap (Javed et al. 2021; Osborn et al. 2022). However, a study in Zimbabwe by Chibanda et al. (2016) reported that community-based interventions, such as the Friendship Bench programme, reduced informational barriers. This was achieved by providing accessible, lay counsellor-delivered mental health education. This implies that locally adapted services can overcome some of the common challenges reported in other settings. After synthesising the studies, there is a need for more inclusive, culturally sensitive and accessible mental health information strategies tailored to the unique challenges faced by informal caregivers.

The study employed a qualitative exploratory design, which is suitable for gaining an in-depth understanding of complex social phenomena, particularly when there is limited existing research on the topic. The approach was chosen to allow rich, detailed exploration of informal caregivers’ experiences, perceptions and behaviours in seeking mental health information in a rural Malawian context.

The population under study was the informal caregivers of clients accessing psychiatric care at Neno District Hospital in Malawi. The study was specifically conducted at the Mental Health Outpatients’ Department (OPD) of the hospital.

Neno District Hospital is a district hospital that provides medical care for various conditions in the Southern Region of Malawi, including mental health conditions. Neno District Hospital was chosen for this study because of its capacity to handle a variety of non-communicable diseases, including mental health illnesses, at its OPD clients and its provision of non-paying services.

To ensure an unbiased sample, it is recommended that the subjects possess similar characteristics to those in the population. For this study, purposive sampling was employed, with a sample size of 7–10 respondents until data saturation. Utilising purposive sampling, as described by Bryman (2016), enables researchers to rely on their own judgement when choosing participants for their surveys. Purposive sampling is a non-probability sampling approach that selects participants based on specific characteristics that align with the research objectives, making it particularly advantageous in qualitative research (Akkaş & Meydan 2024).

This study used a semi-structured interview guide. This semi-structured interview guide was interpreted in the Chichewa language, which is a local language that is used in all parts of Neno District. This was relevant for this study because it allowed open-ended responses from participants for more in-depth information and flexibility. Face-to-face in-depth interviews lasted between 30 and 50 min and were conducted in private consultation rooms at the hospital’s mental health outpatient unit to ensure privacy, maintain participant comfort and confidentiality.

A total of 11 informal caregivers were interviewed. Following the approach described by Guest, Bunce and Johnson (2006), the emergence of new codes and themes after each interview was monitored. Saturation was considered to be reached when consecutive interviews yielded no new substantive information relevant to the study objectives. In this study, saturation was observed from the tenth interview and confirmed with the eleventh, as no additional codes or themes emerged. This point of saturation was further validated by revisiting earlier transcripts to ensure that the identified themes adequately captured the breadth and depth of participants’ experiences. Data collection took 2 weeks. Interviews were conducted after they had finished attending the clinic with their clients.

This study followed Saunders and Townsend’s (2016) recommendation, where the trustworthiness and validity of the qualitative research were assessed by applying four criteria: credibility, dependability, confirmability and transferability.

To ensure credibility, which is the confidence in the truth of the data, the study interviewed participants who were living with mental illness. The interviews were conducted and recorded using an audio recorder. The recorder was replayed for the participants to confirm their responses before data were analysed, and to ensure credibility.

Raw data collected as well as recordings were shared with the supervisor to inspect the data throughout the study, so that the data were verified to be unbiased and impartial.

Firstly, dependability is the stability of data over time and across conditions. This was achieved through an audit inquiry, whereby the collected data were scrutinised by the external reviewer. Secondly, participant narratives have also been included in the research findings.

Transferability is the criterion that measures how the data findings can be applied to other contexts, and this was achieved by the provision of a thick, detailed description of the participants’ demographics.

Thematic analysis was employed to analyse the research data. This qualitative analytical approach involves identifying, analysing and reporting patterns and themes in data (Braun, Clarke & Weate 2016). An inductive approach was adopted, allowing themes to emerge directly from participants’ narratives without the imposition of a predefined theoretical framework. This approach was well-suited to the exploratory nature of the study, which aimed to uncover the lived experiences and information-seeking behaviours of informal caregivers. While coding and theme development were grounded in the data, the interpretation and discussion of findings were later aligned with Wilson’s Model of Information Behaviour, which provided a conceptual lens to understand the dynamic interplay between caregivers’ motivations, contextual barriers and information-seeking actions.

Ethical clearance to conduct this study was obtained from the Mzuzu University Faculty of Health Sciences, Research Committee (FOHS/STJOG/24/014) and the Saint John of God College of Health Sciences (STJOG) Research and Ethics Committees. The researcher also obtained permission from the Neno District Hospital to conduct the study within their facility. Participants who agreed to participate in the study gave informed consent. Before signing the form, the researcher provided them with detailed information about the study, including its purpose, the procedures involved and the potential risks and benefits. Participants were also informed of their right to withdraw from the study at any time without any negative consequences. Throughout the study, the researcher strictly adhered to all ethical principles of beneficence, justice and others. To ensure privacy and anonymity, all interviews were conducted in private settings, and participants’ names or any identifying details were not recorded; rather, unique identification codes were used. Pseudonyms were used during transcription and reporting to protect participants’ identities.

The demographic characteristics of the participants. The majority were women, 9 (81.8%) and most of them, 4 (36.4%), were in the age range of 20–29 years. Most had primary education, 9 (81.8%). All participants, 11 (100%), were farmers. In terms of tribe, the majority, 7 (63.6%), were Ngoni. Regarding marital status, 7 (63.6%) were married and all participants, 11 (100%), were Christians (Table 1).

To develop codes and emerging themes, a content analysis model was used and it involved: (1) recording audio notes and short notes, (2) asking open-ended questions, (3) translating audio files to English transcripts, (4) reading back short notes taken to participants and playing back recordings to participants for member checking, (5) creating open inductive codes manually and (6) finding emerging themes (Table 2).

A significant number of participants expressed a lack of knowledge on the type of information they need, for example, proper care of their clients with mental health illness, on giving medications and essential care, while some participants lacked encouragement and information on the progress of the client’s illness:

Most participants mentioned healthcare workers as their source of information whenever they want to get advice on how to take care of their clients or when they have some questions pertaining to their clients’ illnesses. Some participants mentioned community groups and other guardians as their source of information in addition to healthcare workers. None mentioned social media or other sources of information. The following are some of the direct quotations from some of the participants:

Many participants evaluate the reliability of the information by verifying with qualified healthcare workers. Some verify by discussing with other guardians and other groups in the community, while others verify with their parents:

A majority of participants seek information on a monthly basis, some on a weekly basis, some twice a week, while others depend on the condition of their client’s mental illness. The following are verbatim quotes from some participants:

Many of the participants share information with other caregivers, who look after clients with similar illnesses. But few of them contact a healthcare worker through a direct phone call. Some interviewees shared the following:

Several participants have difficulties to access information because of logistical challenges, for instance, a lack of money to use for transport to visit the hospital and some participants experience difficulties because of stigma and discrimination from the community, as well as health facilities, while other participants do not have any difficulties to access information about how to care for relatives with mental illness. Overall, most participants attributed poverty as a contributing factor to their problems:

A number of participants reported a significant impact of the challenges they face on the provision of care to their clients, as well as reported that this leads to the provision of insufficient care to clients, as well as poor adherence and compliance to treatment and scheduled hospital follow-up visits. Some participants do not have challenges at all:

The predominant theme emerging from participants suggested seeking information only from qualified health workers and the provision of other basic necessities to clients with mental health illnesses as a solution to overcome challenges in accessing information on their clients’ care. Some participants had no suggestions at all:

It is evident from the literature that the information needed by caregivers of clients with mental illness varies. According to a study conducted by Bangerter et al. (2019), informal caregivers require a significant amount of knowledge and awareness about various mental health-related information to provide adequate care to their loved ones. According to a study conducted by Lilleheie et al. (2020) on mental health nurses from two large mental healthcare organisations in the Netherlands who provided care to older community-dwelling or hospitalised clients with a severe mental illness and their informal caregivers, it was found that the top priority for caregivers is information regarding diagnosis, hospital visits, as well as treatment and services. A study conducted in Hamburg, Germany, by Liebherz et al. (2015) on information and decision-making needs among people with anxiety disorders found that relatively few caregivers and clients dealing with mental illness seek out mental health services. In addition, even for those who do initiate treatment, many fail to receive follow-up care. One possible explanation for this trend may be the lack of information available regarding symptoms, diagnoses, severity of conditions, and available healthcare services and treatment options. Findings from this study indicate that caregivers need information such as: how to take care of their clients, the progress of their clients, as well as assurance and encouraging messages, which is similar to previous studies. The implication of these findings suggests that healthcare systems in Neno District should prioritise educational programmes tailored for caregivers of clients with mental health illnesses to enhance their knowledge and emotional resilience while ultimately improving the quality of care provided to individuals with mental health challenges.

Studies on the information-seeking behaviours of parents and caregivers with mental health illnesses have explored various channels used to obtain information. These include consulting with physicians, searching the internet and asking friends for advice (Singh et al. 2022). A study conducted in Greece, which involved 203 clients who were attending a diabetic clinic, found that healthcare providers were their primary source of information, followed by traditional print and broadcast media and the internet (Kalantzi et al. 2015). It has emerged from these study findings that there is a consistency with previous studies conducted elsewhere, for instance majority of the participants get information from health workers or hospital staff and fellow caregivers with similar illnesses. This implies that healthcare professionals remain the main sources of information for caregivers of clients with mental illness in Neno, other than the traditional print and broadcast media and the internet.

Literature reveals various challenges to the access of information by caregivers of clients with mental illnesses. Baker and Naidu (2021) further found that caregivers often experienced poor communication of information from clinic staff. A study conducted by Nxumalo and Mchunu (2017) found that caregivers who care for those living with mental illness face the risk of being stigmatised by association. As a result, they may experience negative emotions akin to those experienced by individuals with mental illness, such as low self-esteem, shame and anger. Consequently, they may not feel comfortable openly seeking additional information about mental illness. In this study, many participants face significant barriers that hinder their ability to obtain the necessary knowledge and resources. One primary challenge is logistical in nature; caregivers often lack financial resources, which limit their ability to travel to healthcare facilities or meet with professionals who can provide guidance. Caregivers also lack basic needs because of time constraints imposed by piecework jobs, which can result in them missing hospital schedules and other opportunities for information gathering. In addition, stigma and discrimination play a critical role in obstructing access to information; some caregivers reported feeling marginalised by both community members and hospital staff, who prioritise clients without mental illness over those requiring specialised care. This marginalisation not only affects the caregiver’s self-esteem but also limits their access to vital resources and support networks that could enhance their caregiving capabilities. The combination of these factors creates a significant barrier that impedes information-seeking behaviours of caregivers of clients with mental health issues. The implications of these barriers are profound: they not only affect the quality of care provided to the clients but also contribute to the overall stress and burnout experienced by caregivers, ultimately impacting the mental health outcomes for both parties involved.

Despite the valuable insights gained from this qualitative study, it is important to acknowledge its limitations. Firstly, the study involved a small sample of participants, who may not be representative of the broader population of interest. Therefore, the findings cannot be generalised to other contexts or groups in Malawi. Secondly, the principal researcher was directly involved in data collection and analysis; there is a possibility that the researcher’s subjectivity may have influenced interpretation, despite efforts to ensure credibility through member checking and peer debriefing. Thirdly, participants may have been influenced by social desirability bias, offering responses they perceived as favourable rather than fully candid accounts. The study was also confined to Neno District, a rural area with distinct socio-cultural and health service characteristics, which may limit the transferability of results to different regions or urban contexts. Recognising such boundaries is critical when considering the applicability of the findings.