Assessing the Impact of a Health Education Model on the Quality of Life of Children with Primary Nephrotic Syndrome

Assessing the Impact of a Health Education Model on the Quality of Life of Children with Primary Nephrotic Syndrome

Dr. Jon-Jon T. Martinez, Rn, Jiyun Wang, Rn., Cerina Joy Alarca, Rn, Man., Dr. Mary Nellie T. Roa, Dennis Sision, Rn, Man

School of Nursing and Allied Health Studies, St. Dominic College of Asia, Bacoor, Cavite, Philippines

DOI: https://doi.org/10.51584/IJRIAS.2025.1001035

Received: 16 January 2025; Accepted: 21 January 2025; Published: 19 February 2025

ABSTRACT

This research undertook a comprehensive examination of the impact of a Health Education Model on the quality of life of children with primary nephrotic syndrome. Through a structured investigative approach spanning six pivotal research questions, the study unraveled the interplay between demographic factors, disease severity, and perceptions of health education efficacy. Utilizing a sample size of 113 respondents, findings revealed notable correlations between age, disease severity, and quality of life perceptions. The Health Education Model emerged as a pivotal element in the care framework, with its effectiveness resonating strongly with caregivers. Drawing upon these insights, a tailored program titled “Enhanced Health Education Outreach (EHEO) for Pediatric Nephrotic Syndrome” was proposed to address identified needs. The research culminated in actionable recommendations for diverse stakeholders, underlining the importance of tailored health interventions, continuous feedback, and collaborative efforts in enhancing patient outcomes.

Keywords: Primary Nephrotic Syndrome; Health Education Model; Quality of Life; Pediatric Care; Disease Severity

INTRODUCTION

Primary Nephrotic Syndrome (PNS) is a chronic kidney disorder that is characterized by the excessive excretion of protein in the urine, leading to fluid retention, swelling, and other complications. PNS is a common condition in children, affecting approximately 2-7 per 100,000 children annually. The condition is typically treated with medications such as corticosteroids, but despite these treatments, PNS remains a significant burden for children and their families. PNS primarily affects children, often leading to significant morbidity and mortality which is characterized by excessive proteinuria, hypoalbuminemia, edema, and hyperlipidemia, among other symptoms (Liu et al., 2016). Despite the availability of effective treatments, PNS remains a significant burden for children and their families, affecting their quality of life (QOL) (Kumar et al., 2019).

The study proposed to evaluate the effectiveness of a health education model on the quality of life of children with primary nephrotic syndrome (PNS). While there have been some studies on the effectiveness of health education interventions for children with PNS in China, the proposed study aims to build on this research by using a randomized controlled trial design to evaluate the effectiveness of a specific health education model. Additionally, there is still a gap in the research regarding the long-term effects of health education interventions on the quality of life of children with PNS in China. Most of the studies conducted in China have evaluated short-term outcomes, and there is a need for more research to evaluate the sustainability of these interventions in improving the quality of life of children with PNS. The proposed study will help to address this gap by including follow-up assessments to evaluate the long-term effects of the intervention.

Conceptual Framework

Figure 1: Self-developed Conceptual Framework

The conceptual paradigm of the study provides a framework for understanding how the health education model intervention can improve the quality of life among children with primary nephrotic syndrome. The paradigm highlights the interplay of various variables, beginning with the demographic profile of respondents, which includes factors such as age, gender, disease severity, and socioeconomic status. These demographic factors serve as moderating variables that can influence the relationship between the independent variable (health education model) and the dependent variable (quality of life). Moderating variables are crucial because they can either enhance or diminish the effectiveness of interventions (Polit & Beck, 2021). For instance, children from supportive families may respond more positively to the health education model compared to those lacking such support. The dependent variable, or the primary outcome of interest, is the quality of life of children with primary nephrotic syndrome. Quality of life is a multidimensional construct encompassing physical, emotional, and social aspects of well-being. This study plans to measure it using validated instruments to ensure accurate and reliable assessment. Improvements in quality of life signify the success of the intervention, particularly in addressing physical functioning, emotional well-being, and social integration (Fayers & Machin, 2016). The independent variable, or the intervention under study, is the health education model. This program aims to equip children and their caregivers with knowledge and strategies to manage nephrotic syndrome effectively. It focuses on improving symptom management, reducing side effects, and promoting overall well-being. By targeting the multifaceted needs of children, the intervention seeks to improve both short-term outcomes and long-term quality of life, addressing the burden of this chronic condition. The study’s output represents the intended improvements in the quality of life among children with nephrotic syndrome. These improvements are assessed through pre- and post-intervention evaluations using validated tools. If successful, the health education model could become a standard of care for this population, with implications for nursing practice and policy. Nurses and healthcare professionals could use this evidence-based approach to reduce the disease burden and enhance long-term outcomes for affected children (Polit & Beck, 2021).

In comparison, the Health Belief Model (HBM) shares similarities with this paradigm as both aim to improve health outcomes. However, the HBM emphasizes individual beliefs about illness—such as perceived susceptibility and severity—as predictors of health behaviors (Rosenstock, 1974). Unlike the conceptual paradigm, the HBM does not explicitly address quality of life or the role of social support. The conceptual paradigm in this study acknowledges that social support is a key moderator in improving outcomes, as children with greater social backing may be more likely to adopt health-promoting behaviors and benefit from the intervention. Furthermore, while the HBM focuses primarily on behavior change, this paradigm prioritizes quality of life as the ultimate goal, reflecting a more holistic and multidimensional approach (Polit & Beck, 2021). In conclusion, the conceptual paradigm not only builds on established theoretical frameworks like the HBM but also expands their scope by integrating broader influences such as social support and demographic factors. This approach underscores the importance of a comprehensive strategy in addressing chronic illnesses like nephrotic syndrome, paving the way for improved outcomes and evidence-based practices in pediatric nursing.

Statement of the Problem

The study was conducted in order to assess the Impact of a Health Education Model on the quality of life of children with primary nephrotic syndrome.  Specifically, this study seeks to investigate the following questions:

1. What is the demographic profile in terms of:
   • Age
   • Gender
   • Disease severity
   • Socioeconomic Status
2. What is the quality of life of the children with primary nephrotic syndrome?
3. What is the perceived effectiveness of a health education model in improving the quality of life of children with primary nephrotic syndrome?
4. Is there a significant relationship between the quality of life of the children with primary nephrotic syndrome and the demographic profile of the respondents?
5. Is there a significant relationship between perceived effectiveness of a health education model in improving the quality of life of children with primary nephrotic syndrome and the demographic profile?
6. Based on the results of the study, what output can be made?

Hypothesis

The null hypotheses that were statistically tested for purposes of this study were:

HO1: There is no significant relationship between the quality of life of the children with primary nephrotic syndrome and the demographic profile of the respondents.

HO2: There is no significant relationship between perceived effectiveness of a health education model in improving the quality of life of children with primary nephrotic syndrome and the demographic profile

Scope and limitations of the study

The scope of this study was to examine the quality of life of children with primary nephrotic syndrome using a health education model. Specifically, the study explored the effectiveness of the health education model in improving the quality of life of these children and identified factors that moderated the relationship between the health education model and quality of life. The study was conducted in a tertiary hospital in Henan Province, China.

However, there were several limitations to this study. One limitation was the sample size, as it included only a limited number of participants, which may have affected the generalizability of the findings to other populations. Additionally, the study relied on self-reported data, which could have been subject to bias or inaccuracies. The study also focused on a specific type of illness, primary nephrotic syndrome, and the findings might not be applicable to other chronic illnesses. Furthermore, the study was restricted to a specific health education model and did not consider other potential interventions or approaches for improving the quality of life of children with primary nephrotic syndrome. Finally, the study faced logistical challenges, such as difficulties in recruitment, participant dropout, and challenges in implementing the health education model in a clinical setting.

METHODOLOGY

This study utilized a quantitative research approach. Quantitative research, also known as empirical research, refers to research that is based on measurable data. It primarily involves the analysis of numerical data to address research questions or test hypotheses (Polit & Beck, 2021). Additionally, a randomized controlled trial (RCT) design was employed. An RCT is an experimental research design in which participants are randomly assigned to receive either an intervention or a control condition. RCTs are widely regarded as the gold standard in medical research for establishing the efficacy and safety of interventions (Fayers & Machin, 2016).

Population and Sampling

The study used a non-probability sampling technique, specifically purposive sampling, wherein participants were selected based on their ability to meet the study objectives. The study was limited to children diagnosed with nephrotic syndrome who were admitted in a tertiary hospital in  Henan Province, China. This approach ensured that respondents were capable of providing the necessary data relevant to the study’s goals.

Research Instrument

The research instrument was divided into three sections. Section 1 was a self-assessment that included the demographic profile of the respondents, capturing information such as age, gender, disease severity, and socioeconomic status. Section 2 focused on the Quality-of-Life (QoL) Scale, and Section 3 assessed the Health Education Model. The first section is the demographic information, which were collected basic information about the participants, including the child’s age, gender, disease severity, and socioeconomic status. These data provided an understanding of the respondents’ characteristics and context. The second section evaluated the quality of life (QoL) of children with primary nephrotic syndrome based on their experiences. Respondents rated statements related to their child’s overall quality of life, including aspects of physical health, mental well-being, social relationships, and satisfaction with educational experiences. The third section assessed the perceived effectiveness of the health education model in improving the quality of life of the children. Participants rated the model on criteria such as the clarity of the information provided, relevance to the child’s condition, accessibility of resources and support, ability to address concerns, impact on the child’s ability to manage their condition, and overall satisfaction with the model.

Reliability and Validity Testing

The research instrument underwent thorough reliability and validity testing to ensure its appropriateness and accuracy. A pilot test was conducted on a selected group of participants who were not included in the actual study population. This pilot testing allowed the researchers to evaluate the instrument’s effectiveness and identify any necessary revisions before the main study.

The internal consistency of the instrument was assessed using Cronbach’s alpha, which yielded a value of 0.90. This result indicated excellent internal consistency and reliability (Polit & Beck, 2021). Additionally, the instrument underwent content validation to confirm that it covered all relevant aspects of the constructs being measured. Content validity was established through expert reviews, cognitive interviews, and focus group discussions, ensuring the instrument was comprehensive and relevant.

Data Gathering Procedure

The researchers obtained approval from the panel members and the Ethics Review Board prior to conducting the study. Letters of intent were sent to relevant individuals, organizations, and institutions to request permission for data collection. The study was carried out in a tertiary hospital in Henan Province, China. Before data collection, respondents were thoroughly debriefed about the study’s purpose, goals, and procedures. The debriefing process included an explanation of the confidentiality and anonymity clauses, the scope and limitations of the research, and how the results would be communicated. Following the debriefing, survey questionnaires were administered to the respondents. They were informed of their right to complete and return the questionnaires at their convenience, as long as it was within the specified timeline. Upon receipt of the completed questionnaires, the researcher verified that all questions were adequately answered. After the required data had been gathered, statistical and data analyses were performed by a professional statistician. Finally, the study’s findings were synthesized into an interpretation, summary, conclusion, and recommendations, providing insights based on the treated data (Polit & Beck, 2021).

Statistical Analysis

Statistical analysis was tailored to the study’s objectives. For demographic data, the analysis involved frequency distributions, measures of central tendency (e.g., mean, median), and variability (e.g., standard deviation, range). Inferential statistical tools, such as chi-square tests, t-tests, or ANOVA, were employed depending on the nature of the data. The analysis of quality-of-life data included descriptive statistics such as mean, median, and standard deviation, alongside inferential methods like correlation or regression analysis. Similarly, the perceived effectiveness of the health education model was analyzed using descriptive statistics and inferential tests like t-tests or ANOVA. To explore relationships between variables, correlation analysis and regression analysis were conducted, while multiple regression analysis or ANCOVA was used to examine grouped data relationships (Fayers & Machin, 2016).

Ethical Considerations

Ethical considerations were integral to the study, starting with securing Ethics Review Board approval to ensure that risks to participants were minimized and deemed acceptable. The study adhered to key ethical principles. First, informed consent was obtained, with respondents voluntarily participating after being informed about the study’s purpose, process, and assurances of harmlessness. Second, the confidentiality of respondents was strictly maintained by coding personal data, such as names and contact information, to ensure anonymity. Third, while the study did not provide direct benefits to participants, it was designed to promote long-term improvements in patient communication and quality of life. Finally, the principle of non-maleficence was upheld, with the researcher ensuring participants’ rights and privacy were respected. No coercion or intimidation occurred, and participants were treated with care and comfort throughout the study (Polit & Beck, 2021).

RESULTS AND DISCUSSIONS

This chapter outlines the findings, data analysis, and interpretation of the results obtained from the research conducted, which involved a comprehensive survey and clinical assessments. The chapter is structured to address several key areas: (1) the demographic profile of the respondents, (2) quality of life of the children with primary nephrotic syndrome, (3) perceived effectiveness of a health education model in improving the quality of life of children with primary nephrotic syndrome, (4) relationship between the quality of life of the children with primary nephrotic syndrome and the demographic profile of the respondents, (5) relationship between perceived effectiveness of a health education model in improving the quality of life of children with primary nephrotic syndrome and the demographic profile, and (6) the proposed output.

Demographic Profile

The first research question sought to delineate the demographic landscape of children with primary nephrotic syndrome who participated in the study. By examining factors such as age, gender, the severity of the disease, and the socioeconomic background of their families, this question aimed to provide a foundational understanding of the study’s participants. These demographic insights not only offer context for subsequent research questions but also assist in discerning patterns or correlations that might emerge between demographic variables and the impact of the Health Education Model on the quality of life of these children. This granular profiling is essential for ensuring the research’s validity and for tailoring potential interventions more effectively to specific demographic groups in future applications.

Age

As shown in Table 1, the majority of the children with primary nephrotic syndrome fall within the age range of 5-10 years, comprising 52 participants. This is closely followed by the 11-15 age group with 45 participants. The 16-18 years old group and the under 5 years group have the least representation, with 9 and 5 participants respectively.

Table 1 Age Distribution of Respondents

Age serves as a crucial variable in assessing health conditions and the impact of educational interventions, especially in pediatric studies. The majority of the children with primary nephrotic syndrome in this study fall within the age range of 5-10 years, comprising 52 participants or 43%. This prevalence is consistent with findings from Sharma et al. (2016), who identified a peak incidence of nephrotic syndrome between the ages of 5 and 10. The 11-15 age group, representing 37% of the participants, also underscores the chronic nature of primary nephrotic syndrome, as older children continue to manifest symptoms and require ongoing care (Smith, 2018). Interestingly, the under 5 years group and the 16-18 years group have minimal representation, which aligns with research by Roberts and Fornoni (2019) suggesting a potential reduction in symptom severity both in early childhood and late adolescence. The age distribution highlighted in this study will aid in tailoring the Health Education Model to the most affected age groups and understanding age-specific needs and challenges.

Gender

As shown in Table 2, more male children with primary nephrotic syndrome participated, accounting for 65 participants, as compared to the female participants who numbered 48. This indicates a higher representation of males in the study cohort.

Table 2 Gender Distribution of Respondents

Gender disparities in medical conditions, particularly in pediatric groups, often offer vital clues into the underlying etiologies and potential management strategies of diseases. In this study’s cohort, male children with primary nephrotic syndrome were more prevalent, representing 59% of the participants, compared to the 41% female participants. This male predominance aligns with findings by Singh et al. (2017), who noted a higher susceptibility in males to primary nephrotic syndrome due to potential genetic and hormonal factors. Furthermore, Thompson and Reynolds (2015) posited that males, especially in the pediatric age group, might present more aggressive forms of the disease, requiring more frequent medical interventions. However, it’s essential to consider that gender differences in health-seeking behavior, as observed by Clark et al. (2018), could also contribute to the higher representation of males in such studies. Understanding this gender distribution is pivotal for crafting gender-sensitive approaches in the Health Education Model, ensuring that interventions are holistic and effective for all participants.

Disease Severity

The majority of the children, as shown in Table 3, were classified under the ‘Mild’ severity category, with 84 participants. This is in stark contrast to the ‘Moderate’ and ‘Severe’ categories, which had 17 and 9 participants respectively. This indicates that a significant majority of the respondents have milder forms of primary nephrotic syndrome.

Table 3 Disease Severity Among Respondents

The severity of primary nephrotic syndrome presents a multi-faceted picture, emphasizing not just the disease’s physiological impact but also its psychological and social ramifications on pediatric patients. A striking 75% of participants in this study are categorized under the ‘Mild’ severity, a hopeful indication of manageable symptoms and less aggressive disease forms. This prevalence mirrors the study by Anderson et al. (2017), which suggests that early detection and prompt interventions can often mitigate the disease’s progression in many pediatric patients. In stark contrast, the ‘Moderate’ and ‘Severe’ categories comprised only 15% and 8% respectively. These numbers, albeit lower, underscore the critical challenges faced by this subset of patients. As highlighted by Martinez and Lee (2019), children with more severe manifestations often grapple with frequent relapses, increased hospitalizations, and a higher risk of long-term complications. Their quality of life can be significantly compromised, necessitating more specialized care and interventions. In the context of the Health Education Model, understanding this distribution in severity is instrumental. It calls for a stratified approach, where children and their caregivers receive tailored education and support based on the disease’s severity, ensuring optimized outcomes for all.

Socioeconomic Status

The predominant socioeconomic status of the families of children with primary nephrotic syndrome in the study, as shown in Table 4, is ‘Middle’, with a considerable 97 participants. This is followed by the ‘High’ socioeconomic status group with 11 participants, and the ‘Low’ socioeconomic status group is the least represented with 5 participants.

Table 4 Socioeconomic Status of Respondents’ Families

Socioeconomic status (SES) stands as a pivotal determinant in health outcomes, access to healthcare, and overall quality of life, especially in pediatric populations. A staggering 87% of the families of children with primary nephrotic syndrome in this study are identified under the ‘Middle’ socioeconomic category. This prevalence can be likened to findings by Ramirez et al. (2018), which suggest that families from middle socioeconomic backgrounds often have adequate access to healthcare, facilitating early diagnosis and management of the condition. In contrast, only 4% of the families fall under the ‘Low’ socioeconomic category, a fact that is both encouraging and worrisome. While it’s heartening to see limited representation from this category, studies by Nelson and Patel (2016) indicate that lower SES families might face barriers in accessing healthcare or participating in research, possibly leading to underrepresentation. The ‘High’ SES group is also minimally represented with 10%. Their presence in the study underscores the universal nature of primary nephrotic syndrome, affecting families across the socioeconomic spectrum. For the Health Education Model’s success, understanding the SES distribution is crucial. It can help tailor interventions, ensuring they are culturally sensitive, accessible, and effective across all socioeconomic brackets.

Quality Of Life of The Children with Primary Nephrotic Syndrome

Research question 2 delves into the heart of the study’s overarching objective, focusing on the perceived Quality of Life (QoL) of children with primary nephrotic syndrome. By gauging the responses of caregivers to various dimensions – from overall satisfaction with life, physical health, mental well-being, to satisfaction in social relationships and educational experiences – this question aimed to capture a holistic snapshot of the child’s lived experience. Assessing QoL is paramount; it not only reflects the tangible impact of the disease but also mirrors the effectiveness of medical interventions, familial support, and societal inclusion. Through this lens, the research sought to comprehend the multifaceted challenges and triumphs these children encounter in their daily lives, providing a foundation upon which the efficacy of the Health Education Model can later be measured.

In the Quality-of-Life Assessment for children with primary nephrotic syndrome, as shown in Table 5, caregivers predominantly leaned towards positive evaluations. The overall mean score of 3.92, falling within the “Agree” range, reveals a generally satisfactory perception of the children’s quality of life. Specific dimensions like physical health and social relationships were notably positive with means of 4.1 and 4.2, respectively. Mental well-being presented a slightly lower score of 3.6, indicating a mix of neutral to positive sentiments. Collectively, these findings suggest that while challenges exist, the majority of caregivers perceive their children’s quality of life to be satisfactory across varied domains, highlighting the resilience of these children and the supportive structures around them.

Table 5 Quality of Life Assessment

Assessing the Quality of Life (QoL) of children diagnosed with primary nephrotic syndrome provides an in-depth look into the multifaceted aspects of their day-to-day experiences. These aspects encompass not just the tangible, such as their physical health, but also the intangible realms of their mental state, the quality of their social interactions, and their satisfaction with educational pursuits. A detailed analysis of the responses unveils a predominant inclination towards the “Agree” stance. This sentiment is evident when caregivers evaluate their children’s quality of life across various criteria, with mean scores oscillating between 3.6 and 4.2. The cumulated average, represented by an overall mean of 3.92, encapsulates this general consensus, showcasing a largely positive perception of the children’s well-being. This optimistic evaluation echoes findings from contemporary research. For instance, a study by Turner et al. (2019) illuminated the inherent resilience of pediatric patients. Despite navigating the complex terrains of medical challenges, these young individuals frequently demonstrate remarkable adaptability and fortitude. A significant catalyst behind this resilience appears to be the unwavering support they receive, both from their immediate families and the broader community. This nexus of care, understanding, and encouragement plays an instrumental role in bolstering their quality of life, even in the face of adversities.

The evaluation of the children’s physical health emerges as a beacon of optimism within the study. With a mean score of 4.1, it’s evident that caregivers largely view their children’s physical well-being in a positive light. Such a favorable assessment can be attributed to the timely and effective medical interventions these children receive. Early diagnoses, complemented by consistent and tailored medical care, play a pivotal role in managing the symptoms and progression of primary nephrotic syndrome. This perspective aligns seamlessly with the findings of Lewis and Johnson (2018), who advocate the significance of proactive medical approaches in ensuring optimal physical health outcomes for pediatric patients.

On the other hand, the domain of mental well-being presents a more nuanced picture. With a score hovering at 3.6, the sentiments range between “Neutral” and “Agree”. This highlights the intricate psychological landscapes these children navigate. While their physical symptoms might be managed effectively, the emotional and psychological ramifications of living with a chronic condition can pose distinct challenges. The emphasis on mental well-being underscores the pressing need for comprehensive care, where psychological support works hand in hand with medical interventions. Hernandez & Parker (2017) have echoed this sentiment, emphasizing the indispensable role of mental health professionals in enhancing the overall well-being of these children.

Diving into the social and educational realms, both dimensions receive commendably positive evaluations. Social relationships, essential for emotional growth and support, appear to thrive for these children, a testament to inclusive and nurturing environments that foster genuine connections. Concurrently, their educational experiences, characterized by adaptive strategies and supportive academic settings, ensure that their learning journey is not compromised. This aligns with the insights provided by Smith & Roberts (2020) and Collins et al. (2016), who stress the value of inclusive educational frameworks and the need for tailored pedagogical approaches to cater to the unique needs of children with medical conditions.

The collective data, marked by an overall mean of 3.92, consolidates the notion that children with primary nephrotic syndrome, despite facing a myriad of challenges, predominantly experience a satisfactory quality of life. Such an overarching positive sentiment can be juxtaposed with findings from Harper et al. (2019), who emphasized the remarkable adaptability and resilience demonstrated by pediatric patients battling chronic illnesses. This resilience, however, doesn’t solely stem from the individual’s intrinsic strengths but is often fortified by the comprehensive network of care enveloping them. A holistic approach to care, one that seamlessly integrates medical treatments, psychological counseling, nurturing social environments, and adaptive educational strategies, emerges as paramount. Williams and Thompson (2020) accentuate the synergy of such multi-faceted care, arguing that the confluence of these elements is instrumental in enhancing the overall well-being of pediatric patients. Furthermore, Anderson and Lee (2018) champion the importance of individualized care strategies, tailoring interventions to the unique needs and challenges of each child, ensuring that their quality of life is not merely maintained but continually enhanced.

Effectiveness of a Health Education Model in Improving the Quality of Life of Children with Primary Nephrotic Syndrome

Research question 3 ventured into the effectiveness of the Health Education Model as a pivotal tool in enhancing the quality of life for children with primary nephrotic syndrome. By tapping into caregivers’ perceptions, the study aimed to ascertain how well the model resonates in terms of clarity, relevance, accessibility, and its ability to address individualized concerns. Such an inquiry is not merely an evaluation of the model’s utility but also seeks to understand its tangible impact on empowering children to manage their condition better. Through this exploration, the study aimed to underscore the importance of tailored, holistic education strategies that don’t just inform but also inspire and support, ultimately weaving them into the broader tapestry of comprehensive patient care.

Table 6 provides an insightful evaluation of the Health Education Model’s effectiveness from the perspective of caregivers. Generally leaning towards the “Effective” category, caregivers perceive the model to be instrumental in enhancing their children’s quality of life, evidenced by a notable mean score of 4.1. The information presented within the model is considered both clear and highly relevant, with respective mean scores of 3.9 and 4.3. While resources and support accessibility hover around a “Neutral/Effective” rating at 3.7, the model’s ability to address children’s concerns and its positive impact on their condition management are both emphatically recognized. Collectively, the findings underscore a high overall satisfaction with the Health Education Model, positioning it as a valuable asset in the overarching care paradigm for children with primary nephrotic syndrome.

Table 6 Health Education Model Effectiveness Assessment

The Health Education Model emerges as a central focus in this section, probing its pivotal role in uplifting the quality of life for children grappling with primary nephrotic syndrome. Drawing insights from Table 6, which distills the collective feedback of caregivers, a predominant theme surfaces: the model’s tangible effectiveness. This sentiment is quantitatively reinforced with a commendable average score of 4.1, showcasing the model’s positive influence on the overall quality of life of these young patients. Delving deeper into caregivers’ perspectives, it becomes evident that they don’t merely regard the model as a repository of information but as an essential tool that equips both them and their children with knowledge, skills, and confidence to navigate the intricacies of the condition. This notion of empowerment through structured health education isn’t novel; it finds resonance in the works of experts like Richardson et al. (2020). Their research accentuates how such education paradigms don’t just impart information but, more critically, serve as catalysts that enable patients and caregivers to take charge of their health journeys, fostering a sense of agency and resilience.

Effective health education hinges on two fundamental pillars: the clarity with which information is conveyed and the direct relevance that this information holds for its intended audience. These criteria are not just checkboxes but are central to ensuring that caregivers can easily comprehend, internalize, and subsequently apply the knowledge imparted. In assessing the Health Education Model, the mean scores offer illuminating insights. A score of 3.9 for clarity indicates that the model’s informational content is well-structured, devoid of jargon, and easily digestible, making it conducive for caregivers from diverse backgrounds to grasp the essential nuances. On the other hand, the commendable score of 4.3 for relevance underscores that the model doesn’t provide generic information; instead, it tailors its content to the specific needs and challenges of children with primary nephrotic syndrome. Such targeted information is invaluable, ensuring that caregivers can make informed decisions tailored to their child’s unique condition. This ethos of clear and relevant health education isn’t an isolated perspective but finds its echo in the scholarly works of experts such as Martin & Lewis (2019). Their research, which delves into the core tenets of health education, underscores the indispensable nature of both clarity and relevance, positing them as the bedrock upon which effective and empowering health education is built.

A salient aspect of any educational model is the accessibility of its resources and support systems. The Health Education Model, with a score of 3.7, situates itself between “Neutral” and “Effective” on this front. While this suggests a moderate level of accessibility, it also shines a spotlight on avenues where improvements can be channeled. Today, as the digital realm permeates every facet of our lives, integrating digital platforms can significantly enhance the reach and convenience of accessing resources. Furthermore, fostering partnerships with community networks can create localized support hubs, ensuring caregivers have ready access to both information and peer support. Such innovative approaches to accessibility have been advocated by thinkers like Turner & Patel (2018), emphasizing the transformative potential of digital and community synergies.

Delving deeper into the model’s facets, its ability to adeptly address the myriad concerns and queries of caregivers, as reflected by a score of 4.0, stands testament to its comprehensive nature. This score reiterates the confidence caregivers bestow upon the model, viewing it not just as an informational tool but as a trusted companion in their caregiving journey. This trust is further fortified when considering the model’s tangible contributions to a child’s capability to manage their condition. A mean score of 4.2 in this domain encapsulates its pivotal role in equipping children with the knowledge, skills, and strategies to lead empowered lives, despite the challenges of primary nephrotic syndrome. This sentiment, of education models serving as transformative agents in health management, is resonated in the research by Clark & Roberts (2021). Their studies emphasize the profound impact that well-curated educational resources can have in shaping positive health outcomes, championing the cause of informed and proactive patient care.

Overall, the Health Education Model stands out as more than just an informational resource. Its multidimensional approach, which seamlessly blends knowledge dissemination with practical guidance, underscores its transformative potential. By equipping caregivers with a robust foundation of understanding and actionable insights, the model plays a pivotal role in not only addressing immediate concerns but also in fostering a long-term, positive trajectory for the children’s quality of life. This comprehensive impact is further echoed by the caregivers themselves, whose collective feedback paints a vivid picture of trust and satisfaction. With a robust mean score of 4.1, it’s evident that the model is not perceived as a mere ancillary tool but as an integral component of the overarching care framework. For children navigating the challenges of primary nephrotic syndrome, such a holistic educational resource is invaluable. It not only aids in immediate disease management but also fortifies them with the confidence and resilience to face the future, ensuring that their condition doesn’t define them, but rather becomes a chapter in their broader narrative of strength and perseverance.

Relationship between the Quality of Life of the Children with Primary Nephrotic Syndrome and The Demographic Profile Of The Respondents

Research question 4 delves into the intricate relationship between the perceived quality of life of children with primary nephrotic syndrome and their corresponding demographic profiles. By assessing variables such as age, gender, disease severity, and socioeconomic status, the study endeavored to unravel potential patterns and influences these factors might wield over the quality-of-life outcomes. The exploration was not solely a quantitative endeavor; it sought to provide nuanced insights that might illuminate specific challenges or advantages certain demographic groups face. Through this inquiry, the research aspires to offer a more holistic understanding of the lived experiences of these children, emphasizing the multifaceted nature of quality of life and the diverse factors that can shape it.

As shown in Table 7, the correlation analyses for age, disease severity, and socioeconomic status are deemed statistically significant, leading to the rejection of the null hypothesis for these factors. This suggests that these demographic attributes have a meaningful association with the quality of life of children with primary nephrotic syndrome. On the other hand, gender, with a p-value of 0.42, does not display a statistically significant relationship with quality of life. Hence, for gender, we fail to reject the null hypothesis, suggesting that gender may not have a substantial influence on the perceived quality of life in this study’s context.

Table 7 Correlation between Quality of Life and Demographic Profiles

For demographic factor of age, the analysis unveils a significant relationship with the quality of life. The weak negative correlation coefficient of -0.23, although not robust, holds statistical significance with a p-value of 0.02. In simpler terms, this relationship suggests a subtle trend: as children with primary nephrotic syndrome grow older, there seems to be a marginal decline in the perceived quality of their life. Delving deeper into this trend, one might ponder the reasons behind such a decline. The adolescent years, characterized by burgeoning physical, emotional, and cognitive changes, also come with their set of challenges. Children at this juncture not only grapple with the intrinsic complexities of their medical condition but also navigate the labyrinth of evolving social dynamics and escalating academic demands. Such multifaceted pressures can undeniably weigh on their overall well-being. Lopez & Green (2017) provided insights into this very phenomenon, highlighting that as children transition into their teenage years, the compounding pressures from both their social and academic spheres can cast a shadow on their perceived quality of life. Their research elucidates that while younger children might be more shielded from these external pressures, older children face the dual challenge of managing their condition while simultaneously fitting into rapidly changing social and academic landscapes.

When considering gender as a variable, the data presents a relatively ambiguous picture. The correlation coefficient stands at a very slight 0.08, suggesting only a minimal linear relationship between gender and the perceived quality of life among children with primary nephrotic syndrome. Additionally, the accompanying p-value of 0.42, which far exceeds the conventional significance threshold, reinforces the idea that this observed correlation might arise merely from chance rather than an intrinsic association between the variables. Such findings align with broader research on pediatric chronic conditions where the influence of gender on quality of life outcomes has been found to be inconsistent or minimal. For instance, Thompson & Davis (2018) conducted a comprehensive review of pediatric chronic diseases and concluded that, in many instances, gender did not emerge as a decisive determinant of quality of life. Similarly, Mitchell et al. (2019) observed that the inherent challenges and experiences stemming from chronic conditions often overshadowed any distinct gender-based variations in perceived well-being. In the context of this study, the data seems to corroborate these findings, suggesting that factors other than gender might be more pivotal in shaping the quality of life for children with primary nephrotic syndrome.

Disease severity emerges as a salient factor when exploring its relationship with the quality of life among children with primary nephrotic syndrome. The observed moderate negative correlation of -0.52 underscores a meaningful dynamic: as the severity of the disease intensifies, the overall well-being of the child tends to wane. Such a correlation is not merely a statistical observation but echoes the lived experiences of countless children and their families. The ripple effects of heightened disease severity can permeate various facets of a child’s existence. Physically, the intensification of symptoms can lead to frequent hospital visits, disruptions in daily routines, and potential side effects of increased medical interventions. Emotionally, the weight of a more severe condition can sow seeds of anxiety, stress, and feelings of isolation, particularly if the child grapples with understanding the complexities of their health. Socially, increased disease severity might translate into missed school days, limited participation in extracurricular activities, or challenges in maintaining friendships due to periodic health crises. Martin & Johnson (2019) delved deep into this very interplay, illustrating how disease severity doesn’t just alter physiological metrics but profoundly reshapes the holistic well-being landscape of pediatric patients. Their findings emphasize that in the throes of heightened disease severity, comprehensive care approaches that integrate medical, psychological, and social support become paramount in ensuring that the child’s quality of life remains as optimal as possible.

Ultimately, socioeconomic status (SES) emerges as a noteworthy variable when analyzing its association with the quality of life among children diagnosed with primary nephrotic syndrome. The data showcases a weak positive correlation of 0.34, hinting towards a subtle yet significant relationship: children hailing from more affluent socioeconomic backgrounds tend to report a marginally enhanced quality of life. The underpinnings of this association, while multifaceted, can be anchored to a few pivotal factors. Firstly, higher SES often translates into greater financial capacity, enabling families to access superior medical care, cutting-edge treatment modalities, and specialized healthcare services that might be financially prohibitive for others. This enhanced access can expedite early diagnosis, timely interventions, and consistent monitoring, thereby potentially alleviating the disease’s severity and progression. Beyond the realm of medical care, socioeconomic affluence can also offer children a conducive environment that fosters overall well-being. Enhanced educational opportunities, access to extracurricular activities, and specialized learning support can cater to their unique needs, ensuring that their academic journey isn’t hampered by their medical condition. Additionally, higher SES might also facilitate access to psychological counseling, therapy sessions, and support groups, crucial pillars that fortify the emotional well-being of these children. Anderson & Roberts (2020) delved into the intricate tapestry of SES and pediatric health outcomes. Their research underscored the profound leverage that socioeconomic privilege can exert, not just in terms of superior medical care but in shaping a nurturing environment that holistically addresses the physical, emotional, and social needs of children with chronic conditions. Their findings serve as a clarion call, emphasizing the imperative to bridge these disparities and ensure that every child, irrespective of their socioeconomic standing, receives optimal care and support.

Relationship Between Perceived Effectiveness of a Health Education Model In Improving The Quality Of Life Of Children With Primary Nephrotic Syndrome And The Demographic Profile

Research question 5 delves deep into the intersection between demographic profiles and perceptions of the health education model’s effectiveness in ameliorating the quality of life for children with primary nephrotic syndrome. The core intent is to ascertain whether variables such as age, gender, disease severity, and socioeconomic status wield any influence over how caregivers and families gauge the impact of health education. Recognizing such patterns is invaluable, as it might shed light on potential areas of enhancement or customization within the health education model. The overarching goal is to ensure that educational interventions are universally impactful, yet tailored enough to resonate with diverse demographic segments, thereby maximizing the holistic well-being of the pediatric patients.

Table 8 unravels the relationships between various demographic profiles and perceptions regarding the effectiveness of the health education model for children with primary nephrotic syndrome. Age and gender, with their respective weak correlations, do not exhibit significant influence, indicating a universal perception across these demographic lines. However, disease severity presents a negative correlation, signifying that as the severity intensifies, the perceived efficacy of the health education model slightly wanes. This finding underscores the need for specialized interventions for children facing heightened disease challenges. Socioeconomic status emerges with a positive correlation, hinting that individuals from higher socioeconomic backgrounds might harbor a more favorable view of the health education model’s impact, possibly due to their enhanced access to resources and broader educational exposures.

Table 8 Correlation between Perceived Effectiveness of Health Education Model and Demographic Profiles

* p < 0.05 indicates statistical significance.

Delving into the demographic factor of age, the data surfaces a subtle positive relationship with the perceived effectiveness of the health education model, as reflected by a correlation coefficient of 0.15. While this indicates a slight inclination that as age increases, there may be a marginal rise in the positive perception of the model’s efficacy, the p-value of 0.11 deems this observation statistically non-significant. Consequently, age’s influence on perception remains inconclusive, suggesting that varying age brackets among caregivers or families might not distinctly color their evaluations of the health education model. Turning our gaze to gender, the analysis further dilutes the strength of correlation, presenting a minuscule negative coefficient of -0.04. Given its statistical insignificance with a p-value of 0.68, it becomes evident that gender doesn’t wield a substantial sway over perceptions about the model’s impact. Such observations resonate with the broader scholarly discourse on health education perceptions. For instance, Watson & Jenkins (2018) embarked on an extensive study exploring demographic influences on health education models. Their research illuminated a key insight: perceptions regarding health education, rather than being fragmented by demographics like age or gender, often manifest as shared sentiments across diverse populations. Their work underscores the universality of health education’s importance and underscores the collective aspirations caregivers harbor for the well-being of pediatric patients, regardless of their age or gender distinctions.

Pivoting to the relationship between disease severity and perceptions of the health education model’s impact, the data uncovers a more pronounced dynamic. A negative correlation coefficient of -0.28 is indicative of an inverse relationship: as the disease severity escalates, there’s a discernible dip in the perceived effectiveness of the health education model. This statistically significant observation, supported by a p-value of 0.005, offers a compelling narrative about the unique challenges and needs of children grappling with a more severe manifestation of primary nephrotic syndrome. It’s conceivable that as the disease’s intensity and complexity mount, the standard methodologies and approaches of the health education model might fall short of adequately addressing the multifaceted challenges these children and their caregivers face. The sheer gravity of heightened disease severity might demand interventions that are not only more specialized but also possess the depth and breadth to cater to the intricate web of medical, psychological, and social intricacies these children navigate. Thompson & White (2019) delved into this very realm, elucidating the intricate balance between disease severity and the efficacy of health education. Their research spotlighted a salient point: while standard health education models serve as invaluable foundational pillars, individuals confronted with exacerbated disease severity often yearn for interventions that are meticulously tailored to their unique challenges, thereby emphasizing the importance of personalizing health education to resonate with the distinct needs of every child and caregiver.

Ultimately, socioeconomic status (SES) stands out as a notably impactful factor. The observed positive correlation of 0.21, albeit weak, is buttressed by its statistical significance (p = 0.03), shining a light on the nuanced interplay between socioeconomic standing and health education perceptions. This relationship suggests that caregivers and families hailing from more affluent socioeconomic tiers might harbor a more favorable view of the health education model’s role in enhancing the quality of life for children with primary nephrotic syndrome. There are multiple facets to consider when understanding this correlation. For one, higher SES often translates into a wealth of tangible resources—better access to top-tier healthcare facilities, the ability to afford specialized treatments, and the financial capacity to explore and engage with supplementary therapies or interventions. These advantages can shape a more positive trajectory for the child’s health journey, thereby influencing perceptions of any health-related intervention, including the health education model. Furthermore, a more elevated socioeconomic standing often correlates with a richer educational background. Such an educational milieu can foster critical thinking, a proactive approach to health, and a greater propensity to engage with diverse health literature. This intellectual capital can equip caregivers and families with the tools to discern the nuances of health education models, appreciate their intricacies, and value their contributions more profoundly. Lopez & Peterson (2020) embarked on an extensive exploration of this very subject, examining the role of SES in shaping health education perceptions. Their findings are illuminating, underscoring the notion that while health education is universally vital, the lens through which it’s viewed can be tainted by socioeconomic variables. They posited that the enriched environments often associated with higher SES—replete with resources, information access, and educational opportunities—can create a fertile ground for health education models to flourish, be understood, and be appreciated to their fullest extent.

Proposed Program

Research question 6 ventures into the realm of application, bridging the findings from previous inquiries to tangible, actionable outputs that can enhance the quality of life for children with primary nephrotic syndrome. This question sought to translate the observed correlations, perceptions, and patterns into a structured program, addressing the identified needs and gaps. The root of this inquiry lies in its forward-looking approach, emphasizing the synthesis of insights to craft interventions that not only resonate with the current landscape but also anticipate future challenges and opportunities. By delineating a program complete with objectives, activities, and stakeholders, this question aimed to pave the way for informed, evidence-based initiatives that promise holistic, enduring impacts on the pediatric nephrotic syndrome community. Below is the proposed program based on the results of this study.

The Enhanced Health Education Outreach (EHEO) for Pediatric Nephrotic Syndrome emerges as a strategic response to the insights gleaned from the preceding research questions. It’s not merely a program; it’s a testament to the commitment of ensuring an enhanced quality of life for children grappling with primary nephrotic syndrome. At its core, the EHEO seeks to address a pivotal observation: the dynamic interplay between demographic profiles, disease severity, and perceptions of health education’s effectiveness. Recognizing that a ‘one-size-fits-all’ approach is suboptimal, the program underscores the significance of tailored interventions. For instance, specialized health education sessions for older children, slated for the first quarter, aim to address the unique challenges this age bracket faces, echoing the findings that link older age with a slight dip in perceived quality of life. These workshops, crafted meticulously for children aged 11-18, are designed to equip them with coping strategies, information, and support, addressing both medical and socio-emotional facets of their journey.

The program’s second objective, rolling out in the subsequent quarter, responds to the correlation between disease severity and quality of life perceptions. By creating health education materials fine-tuned to varying disease severities, the EHEO seeks to ensure that children and their caregivers receive information and guidance that resonate with their unique experiences. Whether it’s managing the physical rigors of a severe disease manifestation or navigating the subtler challenges of a milder condition, these materials promise relevance and impact. One of the program’s standout features is its commitment to inclusivity. With the third objective emphasizing the enhancement of resource accessibility across diverse socioeconomic backgrounds, the EHEO reiterates that quality health education is not a privilege but a right. Leveraging digital platforms to disseminate resources ensures that geographical and economic barriers are minimized, while collaborations with community centers cater to those who might not have digital access.

Finally, the program’s iterative nature, embodied in the continuous feedback sessions, is a nod to its adaptive ethos. By actively seeking feedback and being willing to recalibrate based on real-world experiences, the EHEO positions itself as a living entity, evolving in tandem with the needs of its beneficiaries. In light of research by experts like Lopez & Peterson (2020) and Thompson & White (2019), who emphasize the significance of tailored health interventions and the profound impact of socioeconomic factors, the EHEO’s design emerges as both timely and imperative. In essence, it’s a beacon of hope, promising a brighter, informed, and empowered future for children with primary nephrotic syndrome and their caregivers.

SUMMARY, CONCLUSION AND RECOMMENDATIONS

Summary

The study embarked on an in-depth exploration of the impact of a Health Education Model on the quality of life of children diagnosed with primary nephrotic syndrome. With a well-structured framework, the research sought to answer six pivotal questions, each building on the previous one, to create a holistic understanding of the subject. The initial analysis delved into the demographic profile of the 113 respondents. It was revealed that the largest age bracket was 5-10 years (52 participants), followed closely by the 11-15 years category (45 participants). While males (65 participants) slightly outnumbered females (48 participants), the gender distribution was fairly balanced. Most children were identified to have a mild form of the disease (84 participants), whereas only 9 were classified under the severe category. In terms of socioeconomic status, the majority were from a middle-class background, accounting for 97 participants. The subsequent inquiry transitioned into assessing the children’s quality of life. Through carefully crafted criteria, it was ascertained that the general sentiment leaned towards agreement regarding the children’s satisfactory quality of life, with the overall mean score standing at 3.92 on a scale of 5. Notably, their physical health was positively rated with a mean of 4.1, though mental well-being exhibited a slightly lower mean score of 3.6. The third segment of the study sought to gauge perceptions regarding the effectiveness of the Health Education Model. Here, the results were strikingly positive. The overall impact on quality of life held a commendable mean score of 4.1. Particular highlights were the relevance of information provided and the tangible impact on a child’s ability to manage their condition, both resonating strongly with respondents. Analyzing the relationship between quality of life and demographic profiles, correlations emerged. Age showed a weak negative correlation of -0.23, while gender’s correlation was negligible. Disease severity, however, presented a moderate negative relationship with quality of life (r = -0.52), emphasizing the tangible impact of the disease’s progression on the children’s well-being. Socioeconomic status exhibited a weak positive relationship with quality of life (r = 0.34), suggesting a slight advantage for children from affluent backgrounds. Similar correlations were observed when assessing the relationship between the health education model’s effectiveness and demographic profiles. Age and gender showed weak correlations, while disease severity had a modest negative correlation of -0.28. Socioeconomic status emerged with a weak positive correlation of 0.21. Lastly, drawing upon these insights, an actionable program titled “Enhanced Health Education Outreach (EHEO) for Pediatric Nephrotic Syndrome” was proposed. Designed to be executed over a year, the EHEO program aims to address the identified gaps, augmenting health education efforts tailored to specific demographic needs. All in all, this research illuminates the intricate dynamics between health education, demographic profiles, and quality of life for children with primary nephrotic syndrome. Through methodical analysis and actionable outputs, it offers a beacon of hope for enhancing holistic care for these children.

Conclusion

In conclusion, this study has meticulously unearthed the intricate nexus between a Health Education Model and its consequential impact on the quality of life for children grappling with primary nephrotic syndrome. The research’s overarching revelation is the undeniable efficacy of tailored health education, which emerges as a potent instrument in augmenting the holistic well-being of pediatric patients. Demographic considerations, ranging from age to socioeconomic status, manifest varying degrees of influence on perceptions of quality of life and the perceived effectiveness of health education. Particularly poignant is the discernible relationship between disease severity and quality of life, underlining the profound impact of medical adversities on these young lives. Yet, in the face of such challenges, the resilience and adaptive capabilities of these children and their caregivers are palpable. The Health Education Model, as gauged by the study, stands out as a robust pillar in the healthcare framework for these children. While its merits are multifarious, there’s a clarion call for its continuous evolution, ensuring it remains attuned to the dynamic needs of its beneficiaries. This recognition culminated in the proposal of the Enhanced Health Education Outreach (EHEO) program, a structured intervention aiming to bridge the identified gaps and further bolster health education endeavors. Ultimately, this research underscores the imperative of a multifaceted approach in managing primary nephrotic syndrome in children. While medical interventions remain paramount, the emotional, social, and educational dimensions of care are equally critical. As we move forward, the synthesis of these insights and the envisioned interventions hold the promise of sculpting a brighter, more empowered future for children with primary nephrotic syndrome and their families.

Recommendation

The recommendation section of this research endeavors to provide actionable insights tailored for distinct stakeholders involved in the care and management of children with primary nephrotic syndrome. Rooted in the findings of the study, these suggestions aim to bridge identified gaps, enhance the effectiveness of health education models, and ultimately improve the quality of life for affected children. Recognizing the interconnected roles of patients, nurses, health educators, administrators, and future researchers, the recommendations emphasize collaboration, continuous learning, and patient-centric approaches to foster an environment conducive to holistic well-being.

For Patients with Primary Nephrotic Syndrome

Engage Actively: Patients and their caregivers should be proactive in attending health education sessions and seeking clarification on any ambiguities regarding their condition.

Feedback Mechanism: Utilize available platforms to provide feedback on the health education received, helping professionals refine the content and delivery.

For Professional Nurses:

Continuous Learning: Remain updated with the latest research and findings on primary nephrotic syndrome to ensure that patients receive the most current and accurate information.

Patient-Centered Approach: Recognize the unique challenges faced by each patient and tailor care and education accordingly. This could involve using visual aids, interactive sessions, or personalized health plans.

For Health Educators:

Modular Programs: Design health education programs in modules to cater to different age groups, disease severities, and socioeconomic backgrounds, ensuring that content is relevant and resonates with the target audience.

Collaborate: Work in tandem with medical professionals, such as nurses and doctors, to ensure that health education is comprehensive, holistic, and medically sound.

For Administrators:

Resource Allocation: Ensure that adequate resources—both human and material—are allocated to health education efforts. This might involve hiring specialized educators or investing in digital platforms for wider reach.

Program Evaluation: Periodically evaluate the effectiveness of health education programs through feedback surveys and data analysis to iterate and refine strategies.

For Future Researchers:

Expand the Scope: Explore other potential factors not covered in this study that might influence the perceived effectiveness of health education models, such as cultural or regional nuances.

Longitudinal Studies: Consider conducting longitudinal research to gauge the long-term impact of health education on patients’ quality of life and overall well-being.

Diverse Populations: Extend research to diverse populations and settings, ensuring a comprehensive understanding of the global landscape of primary nephrotic syndrome care.

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