Integrated behavior model (IBM) based on empowerment to optimize quality of life in mothers of children with autism in Pematangsiantar City, Indonesia

¹College of STIKes Mitra Husada Medan Pintu Air IV Street Kwala Bekala, Medan City, North Sumatera, Indonesia

^&Corresponding author
Eka Falentina Tarigan, College of STIKes Mitra Husada Medan Pintu Air IV Street Kwala Bekala, Medan City, North Sumatera, Indonesia

Introduction    

According to the WHOQOL-BREF (1997), the physical dimension of quality of life includes daily activities, medication dependence, energy, mobility, pain, sleep, and work capacity [1]. Mothers of children with autism have been shown to score the lowest in physical quality of life compared to mothers of children with other neurodevelopmental disabilities. This is attributed to the complexity of developmental disorders in children with autism, which involve cognitive, social, emotional, language, sensory, and motor domains. Symptoms typically emerge between 12 and 18 months of age, and the prevalence is five times higher in boys than in girls [2]. Children with autism often require substantial assistance with daily tasks, which increases the caregiving burden, particularly for mothers. Compared to mothers of typically developing children, those who care for children with autism are more vulnerable to physical health issues, anxiety, depression, fatigue, and sleep disturbances. Research has shown that most mothers who serve as primary caregivers experience high levels of stress, which negatively affects their quality of life [3].

Research by de Castro [4] found that out of 77 mothers with children with autism, more than half experienced physical (55.8%), psychological (59.7%), social (55.8%), and environmental (63.6%) problems. This indicates a need for interventions that support the physical, mental, social, and environmental well-being of mothers. Autism itself is a chronic neurological disability that requires specialized care. According to the WHO [5], approximately 1.3 billion people, or 16% of the world's population, have disabilities. In Indonesia, data from the Coordinating Ministry for Human Development and Culture (Kemenko PMK) in 2023 showed that approximately 2.2 million children aged 5-19 years had disabilities, including 16, 947 children in North Sumatra. Globally, the prevalence of autism is estimated to be 1 in 100 children [6]. A preliminary survey conducted at SDLB Negeri 127,710 and the EPIC Generation Foundation in Pematangsiantar City revealed that all parents of children with autism faced initial difficulties in accepting their child's condition, particularly in social and environmental relationships. Parents also reported experiencing anxiety, stress, and concern about their child's future, all of which impacted their quality of life. The quality of care provided was significantly influenced by the parents' physical and emotional well-being [7].

Several interventions have been implemented to improve the quality of life of mothers of children with autism. Occupational therapy and interventions utilizing the double ABCX adaptation model through a self-compassion approach have demonstrated positive outcomes [8]. However, these existing approaches possess notable limitations: they predominantly focus on isolated psychological aspects (such as emotional coping or mental resilience) while largely neglecting a comprehensive, structured behavioral modification framework that simultaneously addresses cognitive beliefs, social norms, environmental barriers, and practical self-care skills. Furthermore, while prior applications of the Integrated Behavior Model (IBM) have proven effective in predicting health intentions in other public health domains, the potential of IBM remains largely underexplored when combined with structural empowerment frameworks in the context of maternal caregiving for children with developmental disabilities. To bridge this critical gap, the present study introduces a novel integration: Friedmann's empowerment model comprising enabling, empowering, and protecting dimensions is modified and combined with the comprehensive IBM approach. While traditional empowerment models provide structural support, they often lack a granular behavioral mechanism to shift mothers' internal beliefs, attitudes and habits. By merging Friedmann's model with IBM constructs, this study moves beyond purely psychological coping, offering a structured, theory-driven empowerment module designed to systematically enhance mothers' capacity to develop positive behavioral beliefs and intentions. Therefore, this study addresses the existing literature gap by investigating how this integrated approach can optimize the multidimensional quality of life of mothers of children with autism.

As a more comprehensive alternative, the Integrated Behavior Model (IBM) offers a robust, theory-based framework for understanding and modifying health behaviors. The IBM combines constructs from the Theory of Reasoned Action (TRA) and the Theory of Planned Behavior (TPB) and is considered suitable for parents because it emphasizes rational, belief-driven behavior. This model has proven effective in behavior change interventions within public health settings [9]. The IBM posits a relationship between direct action and behavioral intention, underscoring the importance of components such as attitude, experiential attitude, instrumental attitude, perceived norms, injunctive norms, descriptive norms, personal agency, perceived behavioral control, self-efficacy, knowledge and skills to perform the behavior, behavioral alignment, environmental barriers, habits, and the intention to act. Intention reflects an individual's readiness or willingness to engage in health behaviors that can improve quality of life. Experiential attitude refers to an individual's emotional response to adopting recommended health behaviors, while instrumental attitude involves cognitive evaluations of behavior outcomes aimed at improving the quality of life of parents of children with autism. Injunctive norms represent perceived social pressures from others, whereas descriptive norms reflect observed practices or expectations related to health behavior. Personal agency captures parents' perceptions of how easy or difficult it is to engage in health-related actions, particularly in light of environmental facilitators or barriers. Perceived behavioral control describes an individual's overall sense of control over performing the behavior. Self-efficacy refers to the extent to which parents believe they can successfully carry out health behaviors despite facing various obstacles [9].

Research by Alemayehu [10] showed that the Integrated Behavior Model (IBM) effectively explained individuals' intentions to undergo screening and treatment for sexually transmitted infections (STIs) in an at-risk population in Ethiopia. The study found that self-efficacy was the most dominant factor (53%) influencing intention, followed by attitudes (32%), norms (21%), and perceived behavioral control (2%). These findings highlight the importance of strengthening self-efficacy in health interventions. Friedmann's [11] empowerment model comprising enabling, empowering, and protecting can be modified using the IBM approach to enhance mothers' capacity to develop positive behavioral beliefs and intentions. This integrated approach is expected to optimize the quality of life of mothers of children with autism through structured, evidence-based behavioral changes. The research question formulated is: how effective is the Integrated Behavior Model (IBM)-based empowerment model in improving the quality of life of mothers of children with autism? Based on this research problem, the purpose of this study is to determine the effectiveness of the Integrated Behavior Model (IBM) based Empowerment Model in optimizing the quality of life of mothers of children with autism.

Methods     

Design of the study: this research was an explanatory study consisting of two sequential stages. Stage 1 was a quantitative study utilizing an analytical observational approach to explain the relationships between variables among mothers of children with autism. The findings from this stage informed the subsequent qualitative data collection through focus group discussions (FGDs) with therapists, teachers, and mothers, as well as in-depth interviews with experts. Stage 2 was a quantitative study employing a quasi-experimental pre-test and post-test with a control group design to evaluate the effectiveness of a newly developed, IBM-based empowerment module aimed at optimizing the mother's quality of life. The research was conducted in Pematangsiantar City from March to December 2024, across seven locations: Tanjung Pinggir State Special Needs School, Santa Lucia Special Needs School, Epic generation foundation, King kids special needs school, Betsalam foundation, Special needs children friendly home (RRABK), and community-based rehabilitation (RBM).

Respondents: this study involved mothers of children with autism in Pematangsiantar city as respondents. In phase 1 (March to July 2024) 107 respondents participated in a quantitative survey. The sample was selected using a systematic random sampling technique. For the qualitative exploration, FGDs were divided into two groups: 8 mothers of children with autism and 8 teachers from special needs schools and therapy centers. In-depth interviews were conducted with 8 expert informants, including representatives from the health office, community health centers, academics, psychologists, and religious leaders. Phase 2 (November to December 2024) purposefully involved 30 mothers of children with autism who recorded the lowest quality of life scores (ranging from 16 to 43) based on the phase 1 WHOQOL-BREF questionnaire results. These participants were divided into two groups: 15 mothers in the intervention group (receiving direct empowerment using modules) and 15 mothers in the control group (receiving only the e-book version of the modules without direct empowerment). Respondents who failed to complete research stages were considered dropouts.

Procedure

Participant recruitment, eligibility, and allocation: phase 1 examined various factors affecting the mother's quality of life, including maternal and child characteristics, spirituality, attitudes, perceived norms, personal agency, knowledge and skills, behavioral alignment, intentions, environmental barriers, and habits. Based on the identified strategic issues contributing to low quality of life, FGDs and expert interviews were conducted to formulate appropriate intervention strategies. For the phase 2 quasi-experimental study, participants were recruited from the cohort of mothers who participated in phase 1. The eligibility (inclusion) criteria were: i) mothers of children formally diagnosed with autism and ii) categorized as having a low quality of life based on their phase 1 WHOQOL-BREF scores (score range of 16 - 43). The sample size was determined to be 30 participants, which is adequate for evaluating behavioral interventions in small group settings. These 30 eligible mothers were then allocated into two groups: 15 mothers in the intervention group and 15 mothers in the control group (who received standard information via an e-book). Figure 1 is the participant flow diagram so that we know how the participant recruitment process is more transparent.

Intervention procedure, fidelity and compliance: the phase 2 intervention was implemented at the Special Needs Child Friendly Home (RRABK) on Jl. Asahan Km 3.5, Pematangsiantar City. The intervention was delivered through eight structured empowerment sessions, each lasting 60 minutes, addressing key dimensions of the mothers' quality of life: session 1: collective worship and writing a spirituality journal to strengthen inner peace; session 2: discussions to enhance knowledge and awareness regarding quality of life; session 3: mindful parenting practices combined with yoga exercises for mental and physical well-being; session 4: emotional management skills to cope with daily stressors; session 5: inspirational videos of role models to foster hope and resilience; session 6: habit formation through brainstorming within peer support groups; Ssssion 7: positive affirmations to build self confidence and optimism; session 8: reflection, evaluations of benefits and discussions of challenges encountered. To maintain intervention fidelity (ensuring the intervention was delivered exactly as intended), all sessions strictly followed the standardized IBM-based empowerment module. The sessions were directly administered by the primary researcher under the strict supervision of a clinical psychologist. Additionally, to minimize bias, the research process was continuously monitored by a single blinded research assistant who was unaware of the study's specific hypotheses. To ensure participant compliance, researchers and respondents signed a commitment statement at the end of each session to consistently practice the activities at home. Compliance was actively monitored via a WhatsApp group where respondents submitted visual evidence of their daily activity completion, which was reviewed before the subsequent session began. Furthermore, the collaborating field psychologist consistently encouraged participant attendance, resulting in all 15 respondents in the intervention group successfully completing the entire intervention without any dropouts.

Questionnaire: the primary instrument for data collection was a multi-component questionnaire. Spirituality factors were measured using the daily spiritual experience cale (DSES). The questionnaire also assessed maternal and child characteristics, attitude, perceived norms, personal agency, knowledge and skills, behavioral alignment, intention, environmental barriers, and habits. Finally, the main dependent variable, quality of life, was measured using the validated WHOQOL-BREF questionnaire developed by the World Health Organization (WHO).

Statistical analysis: data were analyzed using IBM SPSS and AMOS software. Prior to performing the analysis, missing data were handled by creating a copy of the dataset and performing data imputation. For phase1, path analysis was employed using AMOS to explain the causal relationship among the observed variables affecting quality of life. For phase 2, the effectiveness of the quasi-experimental intervention was evaluated. After assessing the data for normality, within-group differences (comparing pre-test and post-test scores within the intervention and control groups separately) were analyzed using a paired sample t-test. To determine the effectiveness of the intervention module compared to the control group, between-group differences were analyzed using an independent-samples t-test. Statistical significance was established at p < 0,05.

Ethical clearance: this research has received ethical approval from the Health Research Ethics Commission, Faculty of Nursing, Airlangga University (Approval Number 3112-KEPK, dated February 28, 2024) in accordance with the principles of research ethics. Prior to data collection, all participants were provided with complete information regarding the objectives, procedures, potential risks, and benefits of the study. Written consent has been obtained from all respondents, with a clear explanation that their participation is entirely voluntary and they have the right to withdraw from the study at any time without negative consequences. Furthermore, to protect the confidentiality and privacy of participants, all data is anonymized by providing a unique identification code instead of using a personal name. All research data is stored securely and can only be accessed by the research team, ensuring that no personally identifiable information is disclosed in any report or publication.

Results     

Distribution of characteristics of mothers with autistic children in Pematangsiantar city in phase 1 of the research: the characteristics of the mothers, based on data from 107 respondents, showed that most of them were aged 20-29 years (45.8%). In terms of educational background, the majority had completed high school (46.7%). Based on occupation, most of the mothers were housewives (49.5%). Regarding marital status, the majority were currently married (91.6%). In terms of the number of children, most of the mothers had more than two children (53.3%). Based on experience in caring for autistic children, the majority had no prior experience (87.9%). With respect to family type, most of the mothers belonged to nuclear families (85.0%). In terms of economic status, the majority had a monthly income of ≥ 2,501,519 (74.8%). Regarding the age of the child, most of the mothers had autistic children aged > 5-12 years (67.3%). Based on the gender of the autistic child, the majority had sons with autism (73.8%) ( Table 1, Figure 2).

Empowerment model based on integrated behavior model to optimize the quality of life of mothers with autistic children:  the study revealed that the variables influencing intention were personal agency (estimated value = 0.327), perceived norms (estimated value = 0.254), and attitudes (estimated value = 0.115), with personal agency exerting the greatest influence on intention. The variables influencing behavior included knowledge and skills (estimated values = 0.412 and 0.380), intention (estimated value = 0.385), habits (estimated value = 0.294), and spirituality (estimated value = 0.148). Knowledge and skills had the strongest influence on behavior related to maintaining quality of life. The intervention using the IBM-based empowerment module effectively improved the quality of life of mothers. Figure 1 illustrated that the respecified model was a good fit, as indicated by several goodness-of-fit indices (GFIs), which showed that the resulting model met the established criteria or cut-off values for assessing model feasibility.

Divinity model results match: based on Table 2, it shows that the respecified model is a fit/feasible model; it can be seen from several test methods/goodness of fit index, the value of the model produced meets the criteria/cut of value set to test the feasibility of a model.

Distribution of characteristics of mothers with children with autism spectrum disorder (ASD) in 2024 in phase 2 of the research: respondent characteristics showed that the majority of mothers in the intervention group were aged 30-39 years, while those in the control group were aged 40-49 years. Most mothers in both groups had a high school education and were married. Mothers in the intervention group were predominantly housewives, while those in the control group had a more even distribution of occupations. More than half of the respondents in both groups had more than two children, had no previous experience caring for autistic children, and came from nuclear families. In terms of economic status, the majority of mothers in the intervention group earned less than Rp2, 501, 519, whereas most in the control group earned Rp2, 501, 519 or more. Most of the autistic children were aged 5-12 years and were male Table 3.

Baseline and endline data in the intervention and control groups: based on the baseline data, only the intention variable showed a significant difference between the intervention and control groups (p = 0.020), while the other variables did not show any significant differences (p > 0.05), indicating that both groups were comparable before the intervention. In the endline data, all variables showed significant differences (p < 0.05), indicating a real effect of the intervention on improving the respondents' knowledge, skills, habits, spirituality, intentions, behavior, and quality of life Table 4.

Difference test in intervention group and control group: statistical tests showed a significant increase (p < 0.05; 95% confidence level) in all intervention groups compared to the control group. Specifically, significant improvements were observed in knowledge (p = 0.001), skills (p < 0.001), habits (p = 0.030), spirituality (p = 0.006), intention (p = 0.025), and behavior (p = 0.019). Furthermore, the intervention led to a substantial improvement in the respondents' quality of life. The mean difference (delta) in the intervention group was 42.406, compared to only 5.73 in the control group. The analysis demonstrated a statistically significant difference in the quality of life before and after the treatment between the two groups (p = 0.005). This success was influenced by the commitment of the researchers, the active participation of respondents, support from field psychologists, and monitoring through WhatsApp groups. However, the interpretation of these positive effects should be done with caution, given the specific context and limitations of this study. Although this empowerment model shows strong potential as an effective and easy-to-implement strategy, absolute claims about efficacy and generalization are limited by the small sample size and quasi-experimental design used in the intervention phase Table 5.

Discussion     

Factors contributing to the formation of intentions to maintain quality of life in mothers of children with autism: although this study emphasizes psychological constructs such as low self-efficacy and subjective norms as the main obstacles, alternative explanations also need to be considered. The lack of intention to engage in self-care may not be solely a psychological deficit but rather a rational response to systemic and logistical constraints. For example, the absence of easily accessible surrogate care services (surrogate caregivers for children with special needs), high financial burdens, and a lack of inclusive community facilities objectively eliminate a mother's free time. Furthermore, the severity of children's autism symptoms often requires high vigilance, making a standard self-care routine nearly impossible. Therefore, the neglect of personal well-being is often driven by deep environmental and structural limitations, not just a lack of internal motivation. This finding was supported by research conducted by Alemayehu et al. [10], which showed that in the context of health behaviors, self-efficacy contributed the highest level of intention (53%), while behavioral control contributed only 2%. Therefore, strengthening self-efficacy was considered key to forming positive behavioral intentions, including those related to maintaining personal health. Chronic stress resulting from the burden of caring for a child with autism also undermined self-efficacy. Mothers who felt they were failing to manage their child's behavior lost confidence, neglected their own needs, and experienced a decreased quality of life. Bee Wah et al. [12] found that stress was a significant mediator between children's problematic behavior and low maternal self-efficacy. Psychologically, mothers with low agency tended to experience learned helplessness, a feeling of resignation and despair due to repeated failure. This condition was exacerbated by anxiety, loneliness, and emotional imbalance, as described in the study by Kasem et al. [13]. As a result, mothers became disinterested in self-care, even during their free time.

The Integrated Behavioral Model (IBM) emphasized that behavioral intention was the primary determinant of behavior, influenced by attitudes, perceived norms, and personal agency [14]. In this study, most mothers with children with autism demonstrated low levels of perceived norms, specifically injunctive norms (69.2%) and descriptive norms (58.9%). Low perceived norms reflected minimal pressure or social expectations from the environment regarding behaviors that support quality of life. Field observations indicated that mothers tended to focus more on childcare and neglected their own needs due to prevailing social norms that prioritized maternal sacrifice. Without moral and social support from their immediate environment, such as husbands or family members, mothers were less motivated to maintain their physical and mental health. This was reinforced by the findings of Hosseini et al. [15], who stated that mothers of children with autism often put themselves second despite recognizing the importance of personal quality of life. Therefore, perceived norms were not only about the availability of support, but also about how mothers interpreted it in their daily lives. The third factor influencing the formation of mothers' intentions to maintain quality of life was attitude, which included experiential attitude (emotional response) and instrumental attitude (cognitive response). This study showed that the majority of mothers had low attitudes, with 61.7% having low experiential attitudes and 75.7% having low instrumental attitudes. This negative attitude made mothers less motivated to engage in behaviors that support quality of life, such as exercise or relaxation activities. Attitudes were influenced by perceived benefits, social pressure, and personal experiences. In the context of mothers of children with autism, the heavy responsibility of caregiving and cultural norms that prioritized the needs of children often led mothers to feel guilty when prioritizing themselves. This hindered the development of positive attitudes toward self-care behaviors. Consistent with the findings of Ingersoll et al. [16], a positive attitude toward a health intervention or behavior was shown to increase the intention to implement it. Therefore, increasing understanding and support for the importance of balancing parenting roles and personal needs was essential to shaping mothers' intentions to maintain their quality of life [17].

The Influence of knowledge and skills, habits, spirituality, and intentions on quality of life-maintaining behaviors in others of children with autism: the intention to maintain quality of life needed to be supported by adequate knowledge and skills. In this study, the majority of mothers had low knowledge (74.8%) and low skills (79.4%). This lack of knowledge led mothers to not understand the long-term impacts of stress on health, such as hypertension, sleep disorders, and anxiety, and therefore not take steps to address them. Skills played a crucial role in behavioral change because they influenced mothers' ability to implement healthy habits in their daily lives. Knowledge without practical skills was often ineffective. Some essential skills that mothers needed included stress management, time management, and coping mechanisms. However, many mothers lacked these skills due to the absence of proper training or education. This situation was exacerbated by the high pressure and demands of parenting a child with autism, which led mothers to neglect their own needs. Consequently, despite having intentions, mothers struggled to consistently engage in behaviors that supported quality of life. This condition led to a decline in mothers' physical, emotional, and social well-being. This research aligned with Wang et al. [18], who showed that interventions in the form of skills training and social support were effective in improving the well-being of mothers of children with autism. A comprehensive approach combining education and practical training was needed to support mothers in sustainably maintaining their quality of life.

Most mothers of children with autism demonstrated low intentions to maintain their quality of life, as reflected in the 66.4% of respondents who categorized their intentions as low. This low intention resulted in the neglect of healthy behaviors such as exercise, balanced diet, and health check-ups. Mothers tended to prioritize their children's needs over their own, compounded by low knowledge about the importance of self-care and high levels of stress. According to the Integrated Behavioral Model (IBM) framework, behavioral intentions were influenced by three main factors: attitudes, subjective norms, and self-efficacy. Barriers such as time constraints, chronic fatigue, and lack of access to information also weakened mothers' intentions to maintain their well-being. Furthermore, a lack of skills in stress management and self-care prevented the formed intentions from being translated into actual behavior. These results aligned with research by Bee Wah et al. [12], which showed that maternal emotional exhaustion was caused by pressure to be an ideal mother, demanding caregiving routines, and minimal support from partners. Therefore, the development of strong intentions needed to be supported by increased self-efficacy, positive social norms, and practical skills training so that mothers could care for themselves and fulfill their roles optimally. The majority of mothers with children with autism (68.2%) demonstrated inadequate habits for maintaining their quality of life. This finding was reinforced by in-depth interviews, in which most mothers admitted to not having a self-care routine due to the high burden of caregiving. As primary caregivers in nuclear families, mothers faced significant physical and emotional stress, which led them to neglect positive habits such as regular eating, adequate rest, and relaxation. Developing positive habits required intention, commitment, an implementation plan, and consistency [19].

Unfortunately, many mothers lacked the support to establish routines that encouraged self-care. Habits played a crucial role in maintaining emotional and physical balance, but mothers' routines tended to be monotonous and focused entirely on their children, leaving little room for personal needs. Researchers believed that a lack of internalization of the importance of self-care as part of parenting hindered the development of healthy habits. This condition led to chronic stress, emotional exhaustion, and withdrawal from social activities, which negatively impacted quality of life. These findings aligned with research by Kasem [13], which stated that mothers of children with autism were prone to losing interest in self-care due to monotonous routines and limited opportunities for self-expression. In the long term, this lack of habit formation worsened the mother's psychological well-being and disrupted the balance in carrying out the parenting role. Most mothers of children with autism (62.6%) reported low levels of spirituality, which impacted their motivation to maintain their health and engage in self-care. Low spirituality worsened emotional well-being, increased stress, and reduced mothers' mental resilience in coping with the heavy burden of parenting due to the limitations of autistic children [20]. Studies showed that spirituality played a crucial role in building hope, optimism, and providing meaning and purpose in life, all of which were essential in caring for children with special needs. Research by Maarefi et al. [21] emphasized that spirituality and hope for a child's future were key predictors of reduced parenting burden. Spiritual practices, including prayer and belief in a higher power, had been shown to help mothers cope with stress and improve emotional well-being. Conversely, low spirituality made mothers vulnerable to feelings of isolation and powerlessness in optimally fulfilling their parenting role.

The influence of behavior on quality of life in mothers of children with autism: most mothers of children with autism exhibited behaviors that maintained a low quality of life (60.7%). These behaviors included lack of physical activity, poor stress management, irregular sleep and nutrition patterns, and minimal spiritual and social involvement. These conditions directly impacted mothers' low quality of life, which was characterized by physical exhaustion, mental stress, social isolation, and a loss of meaning in life. Quality of life was influenced by various factors, particularly lifestyle behaviors, which encompassed aspects of physical health, spirituality, interpersonal relationships, and emotional management. Poor maternal quality of life was caused by the absence of supportive behaviors, which might have been influenced by a lack of knowledge, skills, habits, or spiritual support. Therefore, interventions targeting lifestyle behavior changes were deemed important to help mothers establish healthy and balanced routines in their roles as parents of children with autism [22]. Health professionals needed to support mothers of children with autism in improving their quality of life through interventions that promoted a healthy lifestyle, including physical activity, nutrition, stress management, interpersonal relationships, health behaviors, and spiritual growth [23].

The effect of empowerment on quality-of-life behavior in mothers of children with autism: the most significant finding of this study was the empirical evidence demonstrating the effectiveness of the IBM-based empowerment module in improving the quality of life among mothers of children with autism. The statistical analysis from the phase 2 quasi-experimental study revealed a statistically significant difference in the quality of life levels before and after the treatment. Specifically, the analysis indicated a significant improvement in the intervention group compared to the control group (p = 0.005). The success of this intervention lies in its holistic, behaviorally grounded approach that directly addressed the theoretical constructs of the Integrated Behavioral Model (IBM), specifically personal agency, attitudes, and habits, which were identified as deficient in phase 1. Rather than merely providing theoretical information, the eight structured sessions acted as catalysts for practical behavioral modification. To improve the quality of life of mothers of children with autism through eight intervention activities. Session 1: community worship and spirituality Journal. Mothers regularly attended community worship and wrote daily spirituality journals. As a result, they experienced increased inner peace, gratitude, and spiritual connectedness, which strengthened psychological resilience [24]. Session 2: knowledge enhancement and small group discussion. Mothers gained insight into autism and quality of life through trusted reading materials and group discussions. This fostered awareness that adequate knowledge formed the basis for healthy behaviors and supported quality of life. Session 3: mindful parenting. Through discussion and practice, mothers learned to implement mindful parenting, which helped improve emotional regulation, reduced stress, and strengthened relationships with their children [25].

Yoga practice. Yoga was taught as a stress management technique through body movement, breathing, and meditation. Mothers felt more relaxed, connected to themselves, and were better able to regulate their emotions [26]. Session 4: emotional management through the use of an emotional thermometer. Mothers were trained to recognize and manage emotions using visual tools and techniques such as the butterfly hug and meditation. As a result, they became more emotionally aware and had better self-control in parenting. Session 5: video role models. Watching inspirational videos from other mothers who had successfully managed their quality of life increased participants' self-efficacy and motivation to emulate positive behaviors. Session 6: peer group and action plan brainstorming. Mothers collaboratively developed healthy behavior action plans within a peer support group, which built self-confidence and solidarity. Session 7: positive affirmations. Through daily affirmations, mothers built self-confidence and an optimistic mindset that strengthened their commitment to maintaining balance in their physical, mental, and spiritual lives [27]. Session 8: reflection activities. This final session included reflective activities to evaluate the benefits and obstacles encountered during the intervention.

The study's findings have significant practical implications for health professionals, psychologists, and policymakers. Traditionally, autism interventions have been very child-centric. However, this study underscores the urgent need for a family-centered approach that actively prioritizes the psychological well-being of mothers as primary caregivers. Healthcare providers must go beyond providing general health education and integrate practical interventions that build skills such as mindfulness, stress management, and emotion management techniques into standard parent training programs. Additionally, facilitating a peer support ecosystem (e.g., structured digital communication groups) is highly recommended. These platforms are essential for shifting subjective norms, validating the struggles of mothers and dismantling the social stigma that equates good parenting with absolute self-sacrifice. Based on the results of data analysis that showed a significant increase in the aspects of knowledge, skills, and intentions of mothers in caring for children with autism, these findings can be strengthened with the perspective of the global literature. Ultimately, the significant improvements in maternal health maintenance knowledge, skills, intentions, and behaviors observed in this study validate the usefulness of the Integrated Behavior Model (IBM) in the context of parenting. Although much of the recent International focus has been on child-directed behavioral therapy, emerging global studies emphasize that caregiver-directed models of empowerment are equally important for family well-being. Aligned with this latest international perspective, our findings make a significant contribution to this evolving global discourse [28]. This is evidenced by the IBM framework structure, which is proven to not only improve daily health habits but also to be a catalyst for improving overall quality of life. These insights provide a strong evidence base for healthcare professionals to implement similar theory-based support systems for mothers of children with autism.

Strength and limitation: the study was conducted in two stages, and its limitations must be recognized in this specific context. Although phase 1 benefits from a large sample and has adequate statistical power and randomization, phase 2 (the intervention phase) uses a quasi-experimental design with a relatively small sample size. These smaller sample interventions limit the ability to establish absolute cause and effect relationships and limit the effectiveness of generalizing interventions to a wider population. In addition, the intervention phase relies on a limited follow-up period, making it difficult to determine whether improvements in maternal quality of life and newly formed behaviors will be sustained in the long term after intensive monitoring is discontinued. Further, the study confronts the anticipated potential bias with strategic solutions. The use of memory-based questionnaires has the potential to cause memory bias in the measurement of behavior and quality of life. To mitigate this, the researcher provided detailed explanations and assistance whenever respondents needed help during the filling out of the questionnaire. There is also the potential for relationship bias due to direct intervention by the researcher, which can give rise to biases stemming from personal relationships. To maintain objectivity, researchers involve research assistants who do not know the specific purpose of the research to help with the monitoring process. Despite the limitations of phase 2, the main strength of this study is that this study remains one of the few structured interventions in Indonesia that specifically targets the maternal quality of life of children with autism. This study was strengthened by the rigorous methodological procedures in phase 1 (including randomization and large sample sizes), the relatively long duration of the intervention in Phase 2, the application of a theory-based intervention model, and the use of validated measuring tools throughout the study.

Future recommendation: the Integrated Behavior Model (IBM)-based module and book titled "Optimizing the quality of life of mothers with autistic children" served as educational resources in community health centers (Puskesmas), particularly in supporting mothers, families, and the community. From a policy perspective, it was deemed necessary to integrate maternal mental health monitoring into routine community health center services, including the provision of affordable therapy services for children with autism. The module was also recommended as an academic reference and theoretical basis for educational institutions. Further research was suggested using direct observation methods to measure behavior and quality of life more objectively. A new research focus could be directed at working mothers to compare the dynamics of quality of life based on employment status, and to evaluate the impact of model implementation on the quality of life of children with autism, including their characteristics based on the severity level of autism.

Conclusion     

The quality of life of mothers with children with autism is intricately linked to various demographic and psychosocial factors. Vulnerabilities such as lower socioeconomic status, lower education levels, lack of prior caregiving experience, and specific child characteristics (e.g., older age or male) are associated with a diminished quality of life. Psychosocially, low personal agency, negative attitudes, and limited perceived norms significantly weaken maternal intentions for self-care. Furthermore, inadequate knowledge, skills, daily habits, and spirituality negatively impact actual health-maintaining behaviors. Although behavioral synergy and environmental barriers did not show a statistically significant effect on quality of life, this study showed a clear pattern of lack of health maintenance behaviors directly related to poorer quality of life. Important findings from this study indicate that integrated behavior model (IBM)-based empowerment interventions have promising potential in improving the quality of life of mothers in the intervention group. This improvement in quality of life is also in line with positive changes in all dimensions measured, including knowledge, skills, intentions, habits, spirituality, and maternal health maintenance behaviors. Given the relatively small sample size and the research design used, the intervention in this study needs to be further evaluated through larger-scale longitudinal studies to ensure generalization and sustainability benefits in the long term.

Competing interests     

The authors declare no competing interests.

Authors' contributions     

Conceptualization: Eka Falentina Tarigan, Siti Nurmawan Sinaga, Herna Rinayanti Manurung. Data curation: Riska Susanti Pasaribu. Formal analysis: Marliani Marliani and Siti Nurmawan Sinaga. Funding acquisition: Siti Nurmawan Sinaga, Herna Rinayanti Manurung and Marliani Marliani. Methodology: Eka Falentina Tarigan, Siti Nurmawan Sinaga. Project administration: Riska Susanti Pasaribu and Herna Rinayanti Manurung. Visualization: Ribur Sinag and Marliani Marliani. Writing Original draft: Eka Falentina Tarigan. Writing review and editing: Siti Nurmawan Sinaga, Eka Falentina Tarigan, Riska Susanti Pasaribu. All the authors have read and agreed top the final manuscript.

Tables and figures     

Table 1: distribution of characteristics of mothers with autistic children in pematangsiantar city in 2024 in phase 1 of the research

Table 2: divinity model results match

Table 3: distribution of characteristics of mothers with children with autism spectrum disorder (ASD) in 2024 in phase 2 of the research

Table 4: baseline and endline data in the intervention and control groups

Table 5: difference test in intervention group and control group

Figure 1: respondent recruitment flow chat

Figure 2: empowerment model based on integrated behavior model to optimize the quality of life mother's with autistic children

References