Introduction

Human immunodeficiency virus (HIV) self-care (defined as assuming responsibility to care and manage one’s disease) plays a pivotal role in improving the health of people living with HIV (PLWH) [1]. While HIV self-care broadly refers to the daily behaviours undertaken to maintain health, self-management explicitly describes the skills required by PLWH to manage HIV. In this study, we conceptualised HIV self-care as a broader concept that incorporates both routine health-maintenance behaviours (adherence to antiretroviral therapy and clinic attendance) and self-management skills required for PLWH to address ongoing medical and psychosocial challenges (problem-solving, decision making and collaboration with healthcare providers) while living with HIV.

Collectively, effective HIV self-care support physical, psychological, and social well-being and enable PLWH to take an active role in healthcare decision making, thereby, potentially improving health outcomes and care efficiency. However, living with HIV can be burdensome, as PLWH often face ongoing medical challenges alongside psychosocial vulnerabilities that hinders engagement in self-care behaviours, such as access to medical services, engagement in physical activity and adherence to antiretroviral therapy (ART) [1].

Effective HIV self-care skills include adhering to medications, problem solving, decision making, resource utilisation, formation of a patient-provider partnership, action planning, and behaviour change (setting goals and self-monitoring). This also includes patients’ tailoring management (managing negative emotions, adapting to the nature of the illness, coping with HIV-related conditions, and developing positive social and family relationships) [2]. Hence, effective HIV self-care may improve the physiological, psychological, and social functioning of PLWH and enable PLWH to take an active role in healthcare decision-making. This, in turn, may translate to better healthcare outcomes, thereby reducing healthcare costs and improving the efficiency and quality of care given [3].

Common and effective strategies that may improve HIV self-care skills include counselling on how to live with HIV, training and provision of symptom management and methods to improve medication adherence [2]. Disclosure of HIV status and support from healthcare providers are also pivotal aspects to improve HIV self-care [2]. These key elements initiate support and decrease fear of discrimination, which then improves HIV self-efficacy and self-care [2].

Mobile health applications (m-HA) provide a platform that complements the medical care administered to PLWH [4]. Existing literature suggests that PLWH generally perceive m-HA intervention positively as they enhance opportunities for HIV self-care through the utilisation of innovation and technology. m-HA provide PLWH with convenience, privacy, and potential to reduce stigma-related barriers to care, thereby facilitating greater engagement in HIV self-care [1]. However, studies also report concerns regarding confidentiality, digital literacy, personalization, and cultural relevance especially in low resource settings. These findings highlight the need for a m-HA that are not only technologically functional but also contextually responsive to users’ psychosocial and structural realities.

Several digital interventions have been developed to support PLWH. In China, the Golden Ark application was effective in reducing HIV transmission risk behaviours [5]. Similarly, in Canada, the WelTel application utilized a text-based communication to enhance medication adherence, thereby effectively reduced viral loads in PLWH [6]. In the United States of America, the VIP-HANA application enabled PLWH to monitor their symptoms and communicate with their healthcare providers [7], and in Indonesia, the RumahSELA application was effective in improving HIV-related knowledge, behaviour outcomes, and access to HIV services [8].

These interventions demonstrated feasibility, acceptability and measurable clinical or behavioural benefits, each targeting specific aspects of HIV self-care rather than integrating comprehensive HIV self-care components within a single m-HA. These studies also focused on the use of mobile or web-based interventions (short text messages, advertisements) or web-based advertisements, instead of a m-HA. To date, no m-HA with integrated features required to improve self-care in PLWH has been developed for the non-homogeneous PLWH population, characterised by diverse backgrounds and complex social determinants, in lower-middle-income countries such as Malaysia. This suggests a gap in the development of a holistic, multi-component m-HA platform designed to address the complex and multidimensional HIV self-care needs of PLWH. However, before developing a m-HA, we need to understand the views, perceived barriers, and facilitators of using m-HA to improve self-care in PLWH in Malaysia. Thus, we aimed to explore the views, barriers, and facilitators of PLWH, doctors, and nurses, regarding the use of a m-HA to improve self-care in PLWH in Malaysia.

Materials and methods

Qualitative in-depth interviews (IDI) were used to explore the views, perceived barriers, and perceived facilitators of PLWH, doctors and nurses in the Infectious Disease (ID) Clinic of a tertiary hospital in Malaysia from 10 January to 6 March 2020. All IDIs were conducted face-to-face before the COVID-19 pandemic.

IDIs were conducted to maintain the anonymity and privacy of PLWH. Hence, IDIs were conducted with eligible participants to determine their preference for content and utility to inform the design of a m-HA aimed at improving HIV self-care in Malaysia. Recruitment of participants ceased once thematic saturation was achieved.

Instruments used

Two instruments were used: a baseline demographic form and a topic guide (Table 1) developed based on literature and the experience of the research team.

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Table 1. Topic guide used for people living with HIV and healthcare professionals.

https://doi.org/10.1371/journal.pone.0349144.t001

Results

A total of 28 participants were recruited: PLWH = 17, doctors = 9, nurses = 2. Median duration of PLWH was 3 years (Table 2).

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Table 2. Demographic data of participants.

https://doi.org/10.1371/journal.pone.0349144.t002

Three themes emerged: (1) perceived benefits and concerns regarding m-HA usage; (2) perceived motivators to use m-HA; (3) perceived influences to use m-HA to improve self-care. Additional illustrative quotations and supporting qualitative data are provided in S1 File.

Perceived motivating factors to use m-health application to improve HIV self-care

Discussion

Most participants believed that a m-HA could improve HIV self-care among PLWH, such as providing convenient access to health information, medication reminders, and support networks. PLWH perceived m-HA as a tool to manage their health, enhance health literacy and facilitate communication with their HCP. However, concerns were raised about data privacy, security, and risk of misuse, given the stigma around HIV. Participants were also worried about accessibility, particularly for those in rural or low-resource areas.

Knowledge of HIV self-care education is pivotal in empowering PLWH to take charge of their HIV self-care routines. However, key concepts of HIV self-care education should be localized and communicated in manageable chunks, as inundating PLWH with too much detail can lead to overwhelm and hinder effective HIV self-care [3,21–23]. Our findings were similar to previous studies, which reported that for health education to be effective, the information provided should be from a trusted or reliable source, constantly updated, able to cater to different types of individuals, avoid overwhelming content, and presented in an easily understandable manner [3,21–23]. The ability of the application to improve HIV-related knowledge further reinforces the role of performance expectancy in the adoption of a m-HA, as PLWH perceived m-HA is a useful tool for enhancing HIV self-care. From the perspective of TPB, increased knowledge may strengthen positive behavioural believes, thereby promote favourable attitudes toward the use of m-HA to improve HIV self-care.

In addition to HIV self-care education, facilitating clinic outpatient visits was also crucial for effective HIV self-care. HCPs can reinforce key concepts in HIV self-care education, clarify doubts, and individualise treatment plans for PLWH during clinic visits. However, studies identified that PLWH missed their appointments due to cost, transport, waiting time, stigma, family pressures, busy work schedules or work commitments, forgetting appointment dates, long waiting hours in the clinic, and poor patient-doctor relationships [24,25]. Delayed linkage to care, missed appointments, and poor retention in care has been associated with increased morbidity and mortality in PLWH and risk of new infections [26].

Features in a m-HA, such as a treatment checklist, appointment reminders, and medication alerts, facilitate a structured environment that offers consistent support and guidance to PLWH throughout their outpatient clinic journey. Similarly, previous research on m-HA appointment systems also reported positive outcomes in reducing no-show rates, improving clinic waiting times, which ultimately enhances patient satisfaction and retention in care [22,24,25]. Effective ART requires a 95% adherence to ART regimen [20]. Studies highlight significant improvements in adherence to ART and a decrease in viral load counts when utilising m-HA reminder features [1]. The paucity in HIV knowledge or ART has been linked to poor medication adherence and improper consumption of the antiretroviral regimen, leading to treatment failure and viral resistance [27]. Therefore, equipping PLWH with knowledge and information of their condition is crucial to support their self-care decisions when engaging with HIV self-care.

Communication with HCP was also important to our participants. The ability to communicate with a HCP fosters a patient-provider partnership, as PLWH can discuss sensitive issues and engage in shared decision-making, thereby improving HIV self-care skills [20,22,23,25]. This was consistent with findings from previous studies suggesting that a robust patient-provider partnership, coupled with high-quality communication, kindles an increase in patient engagement in HIV self-care and adherence to ART [1,22,23]. This reduces the perceived stigma of HIV and barriers to healthcare, thereby improving clinical outcomes and retention in care for PLWH [25,26]. The features of a m-HA that facilitates clinic visits, reminders and communication with healthcare professionals reflects the importance of facilitating conditions which is a key construct within UTAUT 2. When PLWH perceive that adequate resources and support are available, PLWH were more likely to adopt new technologies. This is similar within the TPB where these features enhance perceived behavioural control, as PLWH felt more capable in managing their HIV self-care using a m-HA.

The goal of ART is viral suppression. This can be achieved through monitoring of treatment adherence and tracking of HIV progression via the documentation of medical and laboratory records [20]. The documentation of medical and laboratory records in an m-HA facilitates PLWH to engage in meaningful discussions with HCPs, leading to better management of their condition [22,23,28]. The ability for PLWH to digitally document and track changes over time may facilitate a more active engagement in HIV self-care by enabling users to monitor their progress. Such functionality reflects performance expectancy within the UTAUT 2 as PLWH perceived that the application could enhance the efficiency of managing personal health information. In the same time, access to organized medical data may strengthen PLWHs’ perceived behavioural control, a key construct of TPB by empowering PLWH to take on an active role in managing and making informed decisions regarding their health [28,29]. Together, these findings suggest that integrating features that support self-monitoring and record management may promote greater autonomy and engagement in HIV self-care among PLWH. However, targeted and personalised goals should be established to assist PLWH to manage their condition more effectively [20].

Besides, considerations regarding data accuracy, compatibility with existing healthcare systems, user acceptance, accessibility to m-HA (mobile devices and availability of internet) should be considered [22,23]. This aligns with previous studies, emphasizing the importance of setting achievable targets and addressing concerns to enhance HIV self-care skills [3,20,28].

HIV is associated with stigma and discrimination; hence, any m-HA should adhere to the highest standards of security measures [20,23,30]. Studies have shown that more than half of m-HA users disengaged from using an m-HA due to privacy concerns and security breaches [3,20,30]. Our participants wanted higher standards of authentication features to safeguard data confidentiality, security, and privacy of PLWH. This would enhance the trust of PLWH in using m-HA to improve self-care among PLWH [22,30].

The m-HA should be easy to use, “instinctively driven,” and downloaded for free, as an individual’s willingness to use m-HA can be hindered by scepticism and fear of unfamiliar technology [22,28]. The lack of knowledge or guidance to use m-HA contributes to low self-efficacy, particularly among individuals from the baby boomers’ generation, who were identified to have lower technology literacy [21]. Baby boomers are characterized as digital immigrants who were born before the widespread adoption of digital technology [21]. Generation X, Y, and Z are digital natives who are more comfortable with technology and could immerse themselves in new digital tools, adapting to quick m-HA solutions [21]. Although baby boomers have incorporated technology in the communication and entertainment aspect, some are still sceptical and face challenges in navigating complex mobile applications, as effort expectancy constructs such as utilitarian and hedonic motivators influence the time and effort spent in adopting and continuing use of m-HA [3,9,21]. These findings highlight the importance of effort expectancy within the UTAUT 2, which refers to the degree of ease associated with using a technology. When a m-HA is perceived as simple, secure, and accessible, PLWH are more likely to adopt and continue using it. Such design features may also enhance PLWHs’ perceived behavioural control within TPB by reducing technological barriers and increasing confidence in their ability to use the m-HA effectively.

Additionally, our findings also indicate that PLWH desired a m-HA that delivers information regarding HIV in a non-judgmental, professional tone and avoids the use of medical jargon. Studies highlighted the importance of maintaining a balance in m-HA design, ensuring attractiveness, amusement, and non-judgmental communication while preserving a sense of authority and respect [20,21,23]. The heuristic usability model can be adopted during the m-HA development phases to achieve these goals [21,23].

The incorporation of hedonic motivators, including gamification, rewards, and incentives, was found to enhance the utilization of m-HA for HIV self-care. Literature has also shown that health education uptake can be improved by providing information creatively and interactively through illustrations or gamification [1]. Educational games make information easily understood, interesting, and memorable for the receiver [1,23]. Therefore, enhanced disease knowledge and understanding empower patients to openly communicate with HCP and actively contribute to collaborative decisions regarding their HIV treatment and overall care [3,28].

These findings align with the concept of hedonic motivation in the UTAUT 2, which emphasizes the role of enjoyment and intrinsic satisfaction derived from technology use in shaping behavioural intentions. In the context of m-HA, gamified and incentive-based features may complement utilitarian benefits by enhancing user enjoyment, thereby strengthening positive behavioural intentions towards the application [12,23]. These behavioural intentions contribute to sustained engagement and facilitate the development of habitual use, a key determinant of long-term adoption in UTAUT 2. Consequently, incorporating engaging and interactive elements into m-HA design may be a critical strategy for promoting sustained m-HA use and supporting long-term HIV self-care among PLWH.

Despite perceived benefits of m-HA, our participants indicate greater willingness to use m-HA if introduced by peers or HCPs. This supports the UTAUT 2’s hypothesis, emphasizing the significant role of social influence along with performance and effort expectancy in influencing an individual to adopt a m-HA [3,31]. Studies highlighted the impact of social influence on m-HA adoptions, as individuals with chronic illnesses, such as HIV, tend to seek confirmation of behaviour from others in their environment [3,20]. Participants also stressed the necessity for a secure peer support platform in a m-HA. This platform provides emotional reassurance, motivation, and a sense of belonging for PLWH to enhance their HIV self-care skills, thereby achieving health goals [20,32]. Therefore, recommendations from HCPs and organizations carry significant credibility, influencing acceptance, behaviour, and m-HA usage [21,32].

HCPs have suggested the integration of the new m-HA into standard care as a strategy to improve its acceptance. This aligns with studies advocating for the integration of m-HA with the conventional healthcare system as a strategy to improve acceptance and usage while ensuring continuity and retention in care [32,33]. This integration is seen to reduce healthcare costs as PLWH are empowered to do better while enhancing the efficiency and quality of care given to them [3].

Conclusion

Participants were generally in favour of using a m-HA to improve HIV self-care. Participant perceived that the m-HA could improve their knowledge, would enable them to communicate with their HCP, and assist them in organizing their medical information so that information is readily available at their fingertips. However, participants expressed concerns regarding data confidentiality, security, and privacy, as HIV is associated with stigma and discrimination. Findings from this study could be used to inform the design and development of a m-HA for PLWH in Malaysia to improve HIV self-care.

The findings also demonstrate how constructs from TPB and UTAUT 2 jointly explain the factors influencing the acceptance of m-HA among PLWH. While TPB highlights the role of behavioural beliefs, social norms, and perceived behavioural control in shaping PLWHs’ intentions; UTAUT 2 clarifies technology-related determinants such as performance and effort expectancy, utilitarian, and hedonic motivation. Integrating these theoretical frameworks provides a comprehensive understanding of behavioural and technological influences on the adoption of a m-HA. These insights offer important guidance for the development of user-cantered m-HA interventions that are engaging, secure, and responsive to the needs of PLWH, particularly in supporting sustained HIV self-care in lower-middle-income countries such as Malaysia.

Supporting information

Acknowledgments

This research owes its completion to the generous participation from PLWH and HCPs for their active involvement and valuable contributions that have greatly enriched the quality and depth of this research. This acknowledgement is also extended to the faculty and staffs whose dedication to academic excellence has fostered a conducive environment to learning and growth. Additionally, I would also like to take this opportunity to thank the doctors, staffs and colleagues from the ID Clinic and Pharmacy Department for their guidance and co-operation throughout this research.