Cerebral palsy (CP) is the leading cause of childhood disability, presenting a significant burden in low- and middle-income countries (LMICs) [1]. It is the most prevalent motor disability in children, often accompanied by issues related to sensation, perception, cognition, communication, and behavior, as well as epilepsy and secondary musculoskeletal problems [2]. Recent epidemiological data estimate the global prevalence of CP to be between 1 and approximately 4 per 1,000 live births, or children of the same age. However, it has been difficult to estimate the prevalence of CP in Indonesia due to a lack of comprehensive epidemiological data on CP [3]. Yogyakarta, a region in Indonesia, has reported an increasing number of CP cases in children each year [1]. According to an internal report from the Wahana Keluarga Cerebral Palsy (WKCP), the prevalence of children with CP has been rising annually, with a total of 121 and 392 registered members in the WKCP in 2017 and 2022, respectively.

Children with CP often face limitations in physical activity, verbal and non-verbal communication, and social interactions. According to the Centers for Disease Control and Prevention, over half of children with CP (58.2%) are able to walk independently, while the majority suffer from spastic CP (77.4%). Additionally, 11.3% of these children walk using a hand-held mobility device, and 30.6% experience mobility disruption or lack the ability to walk. Approximately 60% of these children experience developmental disorders with more than one condition by the age of eight [4]. Children with CP from LMICs are at a high risk of poor health-related quality of life (HRQoL), especially physical well-being, which is associated with impaired motor function [5]. Pain, psychological problems, and parenting stress have been identified as predictors of lower HRQoL among adolescents with CP across most domains [6].

Children with CP often experience disabilities that can hinder their developmental progress towards achieving independence. These conditions can also negatively impact their parents in various ways, including physical and mental health, financial stability, and social interaction [6]. In LMICs, particularly in Indonesia, both children and parents are required to navigate a range of long-term medical and non-medical treatments for CP. This not only incurs significant financial costs and time commitments, but also disrupts parents' daily routines and can lead to psychological distress [7]. The effects of physical activity limitations on the quality of life for both children and their parents are not yet fully understood. Gaining insight into the most challenging aspects of this situation is vital, as it allows nurses to provide interventions that are tailored to the specific needs of both parents and children, taking into account Indonesian cultural norms. However, many studies investigating the HRQoL of Indonesian children with CP have been limited by small sample sizes [3,8]. This survey based study was designed to explore the factors affecting the quality of life of children with CP.

Children with CP often transition into adulthood with various limitations and associated diseases, such as intellectual disabilities, developmental disorders, vision problems, and epilepsy, which is a major comorbidity in children with CP [15]. This study showed that pain was the most common comorbidity in children with CP, followed by epilepsy, dysphagia, and constipation. Pain is a primary predictor of quality of life among children with CP and tends to increase with age. Therefore, understanding and managing pain signals is crucial for maintaining their quality of life. A study reported that approximately 65% of 104 non-verbal children with CP in Malaysia experienced pain, which was more frequent in older children with CP and those with spastic quadriplegia [16]. Another 5-year longitudinal study conducted in Europe concluded that pain was a strong predictor of adult HRQoL [17]. This study found that a higher severity of pain corresponded to a lower HRQoL score in children with CP (p=.045). Therefore, it is necessary to assess the presence of pain using the FLACC pain scale in the overall evaluation of children with CP to manage their symptoms appropriately. Pelvic dislocation should be evaluated using the Galeazzi test as a physical examination for early diagnosis, rather than a radiological examination, due to its usefulness in assessing the growth and development of the hip in children older than 4 to 6 months [18]. This study found that 12% of children with CP were suspected of having pelvic dislocation. The prevalence of pelvic dislocation in children with CP was reported to be approximately 10% to 15%. Immediate treatment of pelvic and hip displacements is recommended to prevent an increased prevalence of morbidity and a decrease in quality of life [19]. These findings also highlight several comorbidities related to the HRQoL score in children. This is consistent with other studies that reported a strong relationship between the number of comorbidities and the HRQoL of children with CP.

This study reveals that the average HRQoL score for children with CP was 49.81±20.35, indicating a moderate quality of life. The lowest score was observed in school activities (mean 33.52±30.13), while the highest score was in pain (mean 70.31±29.75). This may be attributed to the fact that the children with CP in this study predominantly had severe physical disabilities, classified as level V on the GMFCS. The severity level on the GMFCS corresponded to a decrease in the average HRQoL score by 4.72 points (p=.003), due to deteriorating motor abilities and movement restrictions, leading to disruptions in school activities. It is crucial, therefore, that caregivers of CP patients increase their attention and understanding of the patients' conditions and needs to ensure the maintenance of their quality of life [20].

The domain of pain does not appear to be a significant issue for children with CP, despite pain being recognized as the most common comorbidity. This may be due to our assessment of the HRQoL of these children being based on parental reports rather than self-reports. This approach was necessitated by the constraints of our study population, which primarily consisted of children with CP who have severe GMFCS and BFMF levels and limited verbal language abilities. A longitudinal study reported on the HRQoL of preschool children with CP, focusing on motor function after a 6-month observation period [20]. Children with CP who have severe physical disabilities (GMFCS level V) were found to have improved motor and cognitive functions, but they also exhibited severe emotional function problems compared to those with milder disabilities. Another study highlighted the variation in the condition of children with CP across different countries, particularly in terms of the distribution of GMFCS levels and the superior HRQoL of children with CP [11,12]. A systematic review reported that children with CP aged 2 to 18 years from LMICs had a significantly lower HRQoL than their counterparts from high-income countries [5].

Previous research in Indonesia has not widely reported the HRQoL of parents. This study found that the mean parental HRQoL score was 55.76 (SD=8.19), a score lower than those reported in most European and East Asian countries, with the exception of Saudi Arabia [21]. The lowest mean was found in physical health (50.67±8.15), while social relations scored the highest (60.69±12.43). No significant correlation was found between the HRQoL of parents and that of their children (p=.486). Interestingly, we noted high average HRQoL scores in the social relationship domain among parents. This could be attributed to the Indonesian cultural practice of cooperation and mutual assistance, which may influence parents' perceptions in the social relation domain [22]. As the severity of motor function increased, the health burden also increased, necessitating intensive care from parents. This resulted in parents experiencing increased physical fatigue, contributing to the lowest score in the physical health domain. Several studies have explored HRQoL and related factors in parents of children with CP, including the HRQoL of the children and their functional status. These studies found no correlation between maternal HRQoL and child functional level, asserting that there is no cor.relation with parents’ HRQoL. However, lower parenting stress levels and adequate social support play a significant role in higher HRQoL among parents [21]. Chalipat et al. [22] examined the HRQoL of caregivers of children with CP using the WHOQOL-BREF questionnaire. They reported that caregivers' HRQoL had a low mean in all aspects, with the lowest in the social domain (9.33±1.49), followed by the psychological domain (18.23±1.50). Approximately 70% of parents described their HRQoL as moderate, and around 66.7% expressed satisfaction with their health condition [22].

The mean total PSI score was 94.93 (SD=17.02), indicating that the majority of parents fell into the severe stress category. According to PSI domains, 94% of parents experienced severe stress in the PCDI domain. The mean HRQoL for children decreased by 5.46 points as parental stress severity increased, both in the total PSI score and in the PSI domains (PD, PCDI, and DC) (p<.05). Parenting stress can impact many aspects, particularly in terms of caring for their children, meeting their children's needs, and the effectiveness of their communication, which directly contributes to a decrease in children's quality of life by up to 5% [23,24]. A severe degree of dysfunction in parent-child interactions reflects feelings of disappointment, rejection, and a lack of bonding between the parent and child. Support from groups and professional experts is necessary to help reduce parental stress and enhance the parent-child bond. Parent distress refers to the stress parents experience when caring for their children, leading to withdrawal from relationships, social life, and potentially causing depression. The term “difficult child” describes the characteristics of the child's behavior and its impact on the parents [23]. A study showed that the PCDI and DC domains are the main contributors to the total PSI score in parents of children with CP. Parents are more likely to experience severe stress when the child has communication loss (odds ratio [OR]=1.9; 95% confidence interval [95% CI]=1.2–3.0), severe pain (OR=1.7; 95% CI=1.1–2.4), or intellectual disabilities (OR=1.8; 95% CI=1.2–2.9) [25]. A European study comparing parents of children with CP to parents of typically developing children found that 26% of parents of children with CP experience a very severe degree of stress, five times more severe than the control group [25]. Mothers of children with CP experience more severe stress as the child's motor function deteriorates compared to mothers of typically developing children [26]. This study demonstrated a correlation between the degree of parental stress and the HRQoL of children with CP. Improved parent-child interaction can be achieved by encouraging parents to participate in support groups and seek professional intervention to reduce parental stress [27,28]. Parents who receive adequate professional support will gain a better understanding of their child's progress and acquire the knowledge and skills needed to effectively manage their child's behavior [28]. Providing early explanations related to the condition of the disease and information on parents' expectations regarding the child's functional abilities can help reduce parental stress [27,28].

This study also has limitations. We relied on proxy reports to evaluate the children's HRQoL, as most children struggle with communication and find interviews challenging. Another study has indicated that self-reported HRQoL tends to score higher than proxy reports, and that elevated stress levels in parenting can negatively impact parents' perception of their child's HRQoL [29]. This study did not collect cognitive and adaptive function tests, nor did it involve specific examinations of hearing and vision dysfunction by professional physicians. Despite these limitations, this study is the first to analyze the stress levels in parents in relation to the HRQoL of children with CP in Indonesia. As such, it can serve as a reference for future long-term intervention strategies for children with CP.

Parenting stress was found to be associated with HRQoL in children with CP. These findings suggest that healthcare professionals, such as clinicians and nurses, should offer attention, support, and counseling to parents to improve the quality of life for both the children and their parents. Identifying the most impactful and significant type of healthcare worker intervention is crucial for enhancing parenting stress and HRQoL in children with CP. The comprehensive management of children with CP should incorporate strategies for improving parental stress.