Mobile App-based Care Management Training to Improve Family Caregiver Competence in Caring for Children With HIV in Indonesia: A Quasi-experimental Study
Article information
Abstract
Objectives
Family caregivers play a crucial role in the care of children with human immunodeficiency virus (HIV); however, they frequently face limitations in knowledge, attitudes, and skills. Mobile application (app)-based training may offer an effective solution to enhance caregiver competence. This study aimed to assess the effectiveness of mobile app-based care management training in improving the knowledge, attitudes, and skills of family caregivers caring for children with HIV.
Methods
A quasi-experimental design, including pretest, posttest, and follow-up assessments, was conducted at a national referral hospital for infectious diseases in Jakarta, Indonesia. The study involved 44 respondents, divided equally into intervention and control groups (22 per group). The intervention group received mobile app-based training, while the control group received conventional caregiver education. Questionnaires assessing caregivers’ knowledge, attitudes, and skills in managing children with HIV were utilized. Data were analyzed using independent sample t-tests and repeated measures analysis of variance (ANOVA).
Results
Repeated measures ANOVA revealed that the intervention group experienced significant improvements in knowledge, attitudes, and skills from pretest to posttest, which were maintained at the 1-month follow-up (p<0.001). In contrast, the control group did not exhibit significant changes in any of these variables (knowledge, attitudes, and skills) throughout the study period.
Conclusions
Mobile app-based care management training significantly enhances caregiving competencies among family caregivers of children with HIV. These findings underscore the potential of digital technology as an innovative and sustainable approach for caregiver training in various healthcare settings, supporting the long-term effectiveness of educational interventions.
INTRODUCTION
Human immunodeficiency virus (HIV), the causative agent of acquired immune deficiency syndrome (AIDS), remains a significant global health challenge, having evolved into a widespread pandemic [1]. The prevalence of HIV continues to be alarming, necessitating serious management attention. In 2022, the Joint United Nations Programme on HIV/AIDS (UNAIDS) estimated that approximately 39 million people worldwide were living with HIV, including 1.5 million children under the age of 15 [2]. Despite advancements in treatment, only about 29.8 million individuals (76%) had access to antiretroviral (ARV) therapy, highlighting persistent disparities in treatment accessibility [2]. Expanding universal access to HIV treatment and care is crucial to achieving the global agenda of eradicating AIDS as a public health threat by 2030 [1].
A similar trend has been observed in Indonesia, where HIV case numbers continue to rise annually. According to the 2023 HIV/AIDS Annual Report by the Indonesian Ministry of Health, the country recorded a cumulative total of 515 455 HIV/AIDS cases, including 14 150 among children aged 1–14 years [3]. Children living with HIV face severe health consequences, such as immune system deterioration, opportunistic infections, and developmental delays, as well as significant psychosocial challenges, including stigma and discrimination [4]. These factors can adversely impact their access to education, social integration, and overall quality of life [5].
Managing ARV therapy in children presents unique challenges, including ensuring medication adherence and managing long-term side effects, which necessitate specialized care to optimize health outcomes [6]. Care management for children with HIV is complex, requiring caregivers to have comprehensive knowledge about ARV medications, proper nutrition, and strategies for managing drug side effects and comorbid conditions [7]. Children living with HIV are highly dependent on caregivers for physical, emotional, and medical support [8]. Thus, empowering caregivers with appropriate knowledge and skills is essential for ensuring high-quality HIV care [9].
However, caregivers frequently encounter barriers in providing optimal care for pediatric HIV patients. Limited knowledge about HIV/AIDS, insufficient understanding of disease management, and lack of awareness regarding medication adherence importance represent significant challenges [10]. Additionally, negative attitudes and stigma surrounding HIV can influence caregivers’ interactions with children and the broader community, ultimately affecting care quality [11]. Structured education and training programs can significantly enhance caregiver competencies, enabling improved support and health outcomes for children with HIV [8].
Advancements in digital technology have transformed healthcare delivery, particularly in chronic disease management, including HIV/AIDS [12]. Previous studies have demonstrated the potential benefits of mobile applications (apps) in healthcare, including improved data collection, real-time reporting, and enhanced caregiver preparedness [13,14]. Digital technology offers new opportunities to promote health and HIV prevention through more accessible services, facilitating real-time health data collection, remote patient monitoring, and improved access to medical information and psychosocial support [15,16]. In HIV/AIDS care, mobile apps can support ARV adherence, manage side effects, and enhance health status monitoring, essential for optimizing care outcomes and improving quality of life for individuals living with HIV [17].
Among technological innovations for managing pediatric HIV care, mobile app-based interventions specifically aim to enhance caregivers’ competence. Although numerous studies have explored mobile health apps for HIV management, few have specifically targeted caregiver training to improve knowledge, attitudes, and skills related to pediatric HIV care [14,18]. Mobile apps are increasingly integrated into healthcare settings as tools for support, education, and care management. In pediatric HIV care, where strict ARV adherence and comprehensive management are crucial, mobile apps provide accessible, user-friendly platforms for educational content, therapy reminders, and psychosocial support [19,20]. By providing caregivers with structured, reliable digital information, these apps empower them to make informed care decisions, improve medication adherence for children, and effectively manage health-related and psychosocial challenges [21].
The urgency of integrating mobile apps into pediatric HIV care is reinforced by various caregiver challenges, including the need for timely, accurate health information, support in managing complex caregiving routines, and reduction of caregiving-related stress [18,22]. Furthermore, the widespread use of mobile phones in low-income and middle-income countries makes mobile apps a practical, scalable solution for reaching caregivers across diverse settings [23]. Therefore, this study aims to assess the effectiveness of mobile app-based care management training interventions in enhancing the knowledge, attitudes, and skills of family caregivers caring for children with HIV.
METHODS
Study Design
This study employed a quasi-experimental, pretest-posttest-follow-up design with a control group to evaluate the effectiveness of mobile app-based care management training in improving the knowledge, attitudes, and skills of family caregivers caring for children with HIV. The study was conducted over an eight-week period, from September 2024 to November 2024, at a primary referral hospital for infectious diseases in Jakarta, Indonesia.
Participants in the intervention group received structured training delivered through a mobile app-based care management system, while those in the control group received conventional caregiver education, consisting of standard informational sessions provided by hospital healthcare professionals.
To ensure consistency and standardization of intervention delivery, a structured protocol was developed, clearly detailing the content, duration, and delivery method for each training session. All training materials were accessible through the mobile app, available exclusively to caregivers in the intervention group. Additionally, prior to the commencement of the study, all researchers and facilitators underwent standardization training and followed a standard operating procedure manual, thus ensuring uniform intervention delivery and minimizing potential bias.
Population and Sample
The population for this study comprised caregivers of children with HIV. Family caregivers were selected as respondents due to their role as the primary support providers for children living with HIV. These caregivers play a crucial role in managing the child’s ARV adherence and overall well-being [8]. Their involvement ensures the child receives consistent and effective care. The sample size was calculated using G*Power version 3.1.6, with parameters set for the t-test for 2 independent groups, a significance level (α) of 0.05, statistical power (1−β) of 0.80, and an effect size of 0.8. Based on these calculations, the minimum required sample size was 42 participants. To anticipate potential dropouts, a total of 44 eligible caregivers were recruited. Initially, participants were identified through purposive sampling, targeting caregivers who provided direct daily care for children diagnosed with HIV. Inclusion criteria were: caregivers aged 18 years or older, providing direct care, willingness to provide written informed consent, ability to participate in the training program, and proficiency in using a mobile device. Following purposive sampling, participants were randomly assigned into 2 groups, with 22 caregivers in the intervention group and 22 in the control group, ensuring equal distribution and minimizing selection bias. Exclusion criteria included caregivers with cognitive impairments or psychological conditions that could impede effective participation, as well as those lacking access to a mobile device or internet. The entire process—from participant recruitment and group allocation through follow-up and data analysis—was systematically documented in the Consolidated Standards of Reporting Trials (CONSORT) flow diagram (Figure 1), ensuring methodological transparency and validity of the sample distribution.
Consolidated Standards of Reporting Trials (CONSORT) flow diagram.
Research Instruments
The research instruments comprised four questionnaire domains. The questionnaire utilized in this study was adapted from previous research [24], and subsequently modified and developed by the researchers to ensure accuracy and relevance within the context of the current study.
This study employed four structured questionnaire domains to comprehensively assess caregiver competence in managing children with HIV:
(1) Demographic Data Questionnaire: Designed to collect basic respondent information, including initial name, respondent code, age, education, gender, employment status, relationship to the child, duration of caregiving for a child with HIV, and monthly family income.
(2) Caregiver Knowledge Questionnaire: Developed to measure caregiver understanding of critical aspects of caring for a child with HIV. Assessed areas include knowledge about ARV, recognition of infection signs, and daily care practices necessary for supporting the child’s health. This instrument consists of 13 statements utilizing a Guttman scale with 2 response options (true/false), where correct answers score 1 point, and incorrect answers score 0 points.
(3) Caregiver Attitude Questionnaire: Intended to explore caregiver perceptions, beliefs, and emotional reactions regarding caregiving for a child with HIV. Areas assessed include caregiver acceptance of the child’s condition, perceptions related to social stigma, and caregiver readiness to provide necessary care. This questionnaire contains 14 statements arranged on a 5-point Likert scale (1=strongly disagree, 5=strongly agree).
(4) Caregiver Skills Questionnaire: Used to assess practical caregiver abilities in addressing various needs of a child infected with HIV. Measured skills include handling medical tasks such as administering ARVs and managing side effects, arranging nutrition, monitoring the child’s health, providing emotional support and education, and advocating for necessary health and social services. This questionnaire consists of 10 statements using a 5-point Likert scale (1=very incapable, 5=very capable), with total scores ranging from 10 points to 50 points, where higher scores indicate better caregiving skills.
To evaluate content validity, the questionnaire was reviewed by an expert panel comprising a pediatric nursing specialist, a community nursing specialist, a medical-surgical nursing specialist, and an HIV specialist nurse. Each item was independently rated by the panel using a 4-point Likert scale to assess relevance, clarity, and alignment with the study objectives, employing a threshold value of ≥0.78 [25]. The measurement results of the item-level content validity index for all items were ≥0.78, indicating that all items met the recommended threshold for content validity and no items required revision, repetition, or modification.
To assess construct validity, a pilot study was conducted involving 30 respondents who were not included in the main study but possessed characteristics similar to those of the target population. The Pearson correlation test was used to evaluate the relationship between each questionnaire item and the total score. Items with a correlation coefficient (r>0.30) were considered valid. The results demonstrated that all questionnaire items met validity criteria, exhibiting correlation values ranging from 0.415 to 0.872, and statistically significant associations (p<0.05) for all questionnaire items. These findings confirm that the instrument effectively measures the intended constructs.
The reliability of the questionnaire was examined using Cronbach’s alpha coefficient to determine internal consistency. The analysis revealed high reliability across all domains, with Cronbach’s alpha values of 0.85 for knowledge, 0.86 for attitudes, and 0.85 for skills. Given that Cronbach’s alpha values of ≥0.70 are considered acceptable, these results confirm that the instrument demonstrates strong internal consistency and serves as a reliable tool for this study.
Intervention
The mobile app-based care management intervention was developed as a structured six-session training program designed to enhance caregivers’ competencies in managing pediatric HIV care. The intervention was implemented in three stages. The first stage involved conducting a comprehensive literature review using thematic analysis to identify core components of digital caregiving interventions [14,26–28]. The key elements incorporated into the training program included educational content, medication reminders, symptom tracking, and support networks.
The second stage focused on developing and implementing the intervention. The training program combined face-to-face sessions with mobile app-based learning modules, allowing caregivers flexible access to training materials (Table 1). The mobile app included five primary sections: Understanding HIV, Daily Care, HIV Medication, Emotional Support, and Consultation. Unlike conventional caregiver education, which is typically limited to in-person sessions, this approach enabled caregivers to reinforce learning through continuous access to evidence-based content.
Description of the mobile app-based care management training intervention
The final stage involved usability testing, in which 10 caregivers who were not part of the main study assessed the app’s ease of use. The System Usability Scale (SUS), comprising 10 items rated on a 5-point Likert scale, was utilized to evaluate functionality and user satisfaction [29]. The mobile app received SUS scores between 80 and 90 (Table 2), indicating high usability and accessibility as a tool for learning reinforcement.
Data Collection
Data collection was conducted in three phases: pre-intervention, intervention, and evaluation. During the pre-intervention phase, baseline data were collected to assess caregivers’ initial competence in caring for children with HIV. This included evaluations of their knowledge, attitudes, and skills using validated self-administered questionnaires. All questionnaires were distributed and completed through face-to-face interviews to ensure clarity and comprehension, allowing researchers to provide necessary explanations and minimize potential misunderstandings. In the intervention phase, caregivers in the intervention group participated in six structured training sessions over 1-month (Table 1), while caregivers in the control group received conventional caregiver education. As this phase focused exclusively on delivering the intervention, no additional data collection occurred during this period. The evaluation phase involved data collection at 2 points: immediately after the intervention (post-test) and 1-month after the post-test (follow-up test). This phase aimed to assess improvements in caregivers’ knowledge, attitudes, and skills, and to evaluate the sustainability of the intervention’s effects over time. As with the pretest phase, data collection was conducted through face-to-face structured interviews, with researchers assisting caregivers in completing the questionnaires to ensure accuracy and reduce response bias.
Statistical Analysis
Data processing and analysis were conducted using SPSS version 23.0 (IBM Corp., Armonk, NY, USA). Demographic data of respondents—including initials, respondent codes, age, education, gender, employment status, duration of caregiving for a child with HIV, and monthly family income—were analyzed descriptively, presented through frequency distributions, means, and standard deviations to provide an overview of sample characteristics. The chi-square test and independent t-test were employed to analyze homogeneity of characteristics between the intervention and control groups. The independent-sample t-test was utilized to evaluate differences between groups at pretest, posttest, and 1-month evaluation points. Additionally, repeated-measures analysis of variance (ANOVA) was conducted to test for significant differences in the mean values of the three repeatedly measured variables.
Ethics Statement
Ethical approval for the study was obtained from the Health Research Ethics Committee of Bani Saleh School of Health Sciences (approval No. EC.114/KEPK/STKBS/VI/20). The study adhered to ethical principles, including autonomy, beneficence, non-maleficence, justice, and confidentiality. Participants provided written informed consent, and their identities were kept confidential throughout the research.
RESULTS
A total of 44 respondents participated in this study after providing written informed consent. They were randomly divided into 2 equally sized groups, with 22 participants in the intervention group and 22 in the control group. Throughout the study period, all participants completed the intervention program without any dropouts.
The average age of participants was 37.22 years in the intervention group and 35.09 years in the control group. The majority of participants were women (81.8%), and most had a high educational level (65.9%). The chi-square test and the independent t-test revealed no statistically significant differences between the 2 groups in demographic variables, including age, gender, education level, employment status, duration of caregiving for the child, and family income (p>0.05 for all variables), as shown in Table 3. These findings suggest that both groups were homogeneously matched at baseline, thereby minimizing potential bias in the intervention outcomes.
Comparison of basic characteristics between the 2 groups
Additionally, Table 4 presents a comparison of average scores for participants’ knowledge, attitudes, and skills before the intervention, immediately after the intervention, and 1-month post-intervention.
Comparison of knowledge, attitude, and skills scores before, after, and 1-month post-intervention between the experimental and control groups
Knowledge Variables
Before the intervention, the independent t-test indicated no significant differences between the intervention and control groups regarding caregivers’ knowledge about caring for children with HIV (p=0.933). However, significant differences emerged immediately after the intervention (p<0.001) and remained significant at the 1-month follow-up (p<0.001), with the intervention group consistently scoring higher on average than the control group. Repeated-measures ANOVA revealed significant differences across the three time points in the intervention group (p<0.001), whereas the control group exhibited no significant changes (p=0.208). Effect size analysis showed an η2 value of 0.810 for the intervention group, suggesting that 81% of the variance in knowledge scores could be attributed to the intervention. In contrast, the low η2 in the control group indicated that no significant changes occurred.
Attitude Variables
Analysis of the attitude variables demonstrated a similar pattern. The independent t-test showed no significant differences between the groups prior to the intervention (p=0.507). Nevertheless, significant differences emerged immediately after the intervention (p<0.001) and persisted up to 1-month later (p<0.001), with the intervention group consistently achieving significantly higher attitude scores than the control group. Repeated-measures ANOVA confirmed statistically significant differences across the three measurement points within the intervention group (p<0.001), while the control group displayed no significant changes (p=0.386). The effect size for the intervention group was η2=0.924, indicating that 92.4% of the variance in attitudes was attributable to the intervention. Conversely, the low η2 value in the control group underscored that no significant attitude changes occurred due to the control conditions.
Skill Variables
Regarding skill variables, the independent t-test revealed no significant differences between the groups prior to the intervention (p=0.303). However, significant differences were observed immediately after the intervention (p<0.001) and remained significant 1-month later (p<0.001), with the intervention group consistently outperforming the control group. Repeated measures ANOVA demonstrated statistically significant differences across the three measurements within the intervention group (p<0.001), whereas the control group showed no significant changes (p=0.082). Effect size analysis for the intervention group indicated an η2=0.797, demonstrating that 79.7% of the variance in skill scores was explained by the intervention. The low η2 value in the control group further confirmed that no significant changes could be attributed to the control conditions.
DISCUSSION
This study aimed to evaluate the effectiveness of mobile app-based care management training in enhancing the knowledge, attitudes, and skills of family caregivers in managing care for children with HIV. Family caregivers play a pivotal role as they provide daily care and emotional support for children living with HIV, who frequently require intensive medical and emotional attention [30,31]. Effective caregiving for children with HIV demands that caregivers possess adequate knowledge and skills in care management, thereby contributing to enhanced quality of life and healthy development for these children [32].
The intervention combined face-to-face training sessions, which served as the educational foundation, with a mobile app designed to reinforce learning by providing repeated access to educational materials. The app functioned not merely as a tool, but as an ongoing learning platform for caregivers. Advances in digital technology, including mobile apps and internet-based platforms, present significant opportunities to support caregivers by offering accessible information, training, and support anytime and anywhere. This improved accessibility enables caregivers to manage care tasks more effectively compared to traditional methods of caregiver training [14,33].
The findings indicate that the mobile app-based care management training significantly improved caregivers’ knowledge, attitudes, and skills. The intervention group showed greater improvements compared to the control group, which had limited access to information and received only a single educational session without supplementary materials. This limitation impacted their ability to retain skills and apply them effectively. In contrast, caregivers in the intervention group had ongoing access to the mobile app, enabling them to review materials, deepen their understanding, and effectively apply their knowledge in daily practice. Notably, these improvements persisted 1-month post-intervention, highlighting the effectiveness of mobile app-based learning in sustaining caregiver competence over time. Flexible access to learning materials enables caregivers to study as needed without dependence on face-to-face sessions, consistent with other studies that emphasize the benefits of digital technology in enhancing caregiver competencies and enabling more accurate care delivery [34,35].
Moreover, digital technology also facilitates improvements in caregivers’ attitudes. The mobile app functioned not only as an educational aid but also as an interactive platform, allowing caregivers to revisit essential information, access emotional support, and acquire strategies to manage daily caregiving challenges. Frequent access to evidence-based information can reduce internal stigma, enhance acceptance of the child’s condition, and build caregivers’ confidence in providing care. Additionally, the app offers psychosocial support through its communication features, assisting caregivers in feeling more connected to support communities and healthcare professionals. Prior research indicates that digital interventions can alleviate caregiving burdens, increase caregiver confidence and empathy toward patients [35], and improve social support and coping abilities for those caring for children with special needs [21].
Furthermore, the use of the mobile app was instrumental in enhancing caregivers’ skills in managing pediatric HIV care. Designed as a supportive tool, the app provides ongoing access to caregiving information, medication reminders, strategies for managing antiretroviral therapy; side effects, and daily care guidelines. Unlike traditional educational methods confined to face-to-face sessions, the mobile app enables caregivers to revisit materials, gain a deeper understanding of care techniques, and effectively integrate these into their daily routines. Studies have confirmed that digital technology aids caregivers in developing effective caregiving skills, such as managing care for cancer patients, thereby improving their physical and mental health [36]. By offering training through mobile apps, caregivers can flexibly and easily develop relevant skills, ultimately enhancing their effectiveness and satisfaction in caregiving roles [37].
The success of the intervention is further supported by the flexibility and accessibility provided by mobile app-based care management training. Mobile technology enables caregivers to learn anytime and anywhere, allowing them greater control over their learning pace, thereby enhancing information retention and practical app. Additionally, the app addresses the common issue of limited access to information faced by caregivers. In situations where caregivers may not always have convenient access to healthcare professionals or direct educational sessions, the app empowers them to independently seek information, understand care guidelines, and manage emerging caregiving challenges for children with HIV. From a theoretical standpoint, this mobile app-based care management training aligns with the family-centered care (FCC) approach, which emphasizes partnerships between families and healthcare professionals in planning and delivering health services, especially for children with special needs [38,39]. FCC theory advocates for empowering families by recognizing their role as the primary caregiving unit responsible for executing caregiving tasks within the family context [40].
Despite these promising results, several study limitations should be considered. First, the limited sample size of only 44 respondents divided into 2 groups may affect the generalizability of findings to a broader population of family caregivers, particularly outside the referral hospital setting in Jakarta. Second, the study focused solely on three variables—knowledge, attitudes, and skills—which may not encompass all critical aspects of HIV care. Third, the post-intervention follow-up duration was limited to 1-month, potentially insufficient for assessing the long-term sustainability of the intervention’s effects. Therefore, future research is recommended with larger samples and more objective measurement methods to provide comprehensive insights into intervention outcomes.
In conclusion, this study provides evidence that mobile app-based training effectively enhances caregivers’ knowledge, attitudes, and skills in caring for children with HIV. Given the substantial challenges faced by caregivers, integrating digital health technology into national caregiving strategies offers a sustainable and accessible solution. Collaboration among government agencies, healthcare professionals, and technology developers is essential to optimize the use of health applications and improve the quality of care for children living with HIV.
Notes
Conflict of Interest
The authors have no conflicts of interest associated with the material presented in this paper.
Funding
This research was supported by the BIMA Grant for Research and Community Service from the Directorate General of Higher Education, Research, and Technology through the Directorate of Research, Technology, and Community Service (DRTPM) with number: 0667/E5/AL.04/2024.
Acknowledgements
The authors wish to express their gratitude to the respondents who voluntarily participated in this study, as well as to the referral hospital for infectious diseases in Jakarta, which granted permission to conduct this research.
The funders had no role in the study design, data collection, analysis, and interpretation; report writing; or in the decision to submit this article for publication.
Author Contributions
Conceptualization: Purwati NH, Syamsir SB. Data curation: Mutmainah, Rani AH. Funding acquisition: Purwati NH. Methodology: Purwati NH. Project administration: Purwati NH, Natashia D. Visualization: Mutmainah. Writing – original draft: Purwati NH, Syamsir SB, Mutmainah. Writing – review & editing: Syamsir SB, Natashia D, Rani AH, Budiyati D, Setiawan A.