This project was approved by the ethics committee at the Ministry of Health in Kuwait (2021/1865). The study adhered to the Declaration of Helsinki. Electronically signed informed consent forms were obtained from all participants.

This cross-sectional study used a web-based questionnaire to assess the level of perceived ease of care faced by families of children with CP aged 5 to 16 years. Inclusion criteria were (1) being a caregiver of at least one child aged 5 to 16 years with a documented diagnosis of CP, (2) residing in and receiving care in Kuwait (ie, working or studying), and (3) being able to communicate effectively (ie, read and write) in either Arabic or English. A purposive nonprobability sampling method was used to recruit participants. Study flyers were distributed in waiting rooms of rehabilitation clinics throughout Kuwait to inform parents of children with CP about the study. Interested parents contacted the research team. After screening for the inclusion and exclusion criteria, parents were sent an electronic form to complete.

Health care professionals in rehabilitation clinics around Kuwait working with developmental disorders were contacted by the research team and asked to inform their clients about the study using the study flyer. Participants who agreed to take part in the study were screened for the inclusion and exclusion criteria, then sent a link to the web-based form. Participants were asked to complete an electronic form about the demographics of the caregivers and the child with CP for whom they were providing care. Caregiver-related variables included age, gender, educational level, marital status, working hours, and the number of other caregivers. Child-related variables included age, gender, topographic type, Gross Motor Function Classification System (GMFCS) level, hand function (ie, independent, partially dependent, or totally dependent), height and weight, and schooling situation. Next, participants scored their experience using (1) the Ease of Caregiving for Children (ECC) measure, (2) participation in the self-care domain of the Child Engagement in Daily Life Measure (CEDLM), and (3) the SDO measure. The language in which each of the tools was presented was based on the participant’s preferences.

ECC is a self-reported tool developed to examine the physical demands of caring for a child with CP [16]. Caregivers were asked to rate their perceived level of physical demands associated with caring for children using 12 items relating to mobility, positioning, and self-care. The level of demand was rated using a 5-point Likert scale (1=“very difficult” to 5=“no help is needed”). Higher scores (maximum 60) indicate greater ease of care perceived by the caregiver (ie, less burden of caregiving) [17]. Both English and Arabic versions were reliable (intraclass correlation coefficient [ICC] >0.69) and valid [17,18]. Cultural adaptation was established in Arabic [17].

The self-care domain of the CEDLM is an 18-item caregiver-reported measure that assesses the caregivers’ perceptions of the child’s level of independence with their self-care activities (eg, toileting, dressing, feeding, drinking, and grooming) [17]. The level of independence is rated using a 5-point Likert scale (1=“does not do the activity” to 5=“does the activity independently most of the time”). A high level of independence with self-care activities is indicated by a higher score (maximum 90) [17]. Both English and Arabic versions of the scale were reliable (ICC=0.96) and valid [17,19]. Cultural adaptation was established in Arabic [17].

The SDO is a self-reported tool that was used to assess caregivers’ satisfaction with daily activities. This tool explores different daily activities where a higher score indicates a higher level of participation and satisfaction across the constructs of work (4 items), leisure (3 items), home management (4 items), and self-care (3 items) [20,21]. This 14-item tool examines level of performance (range 0‐14) and the level of satisfaction (range 14‐70) [20,21]. Reliability (ICC=0.93) and validity of both Arabic and English versions of the scale were established [20,21]. Cultural adaptation was established in Arabic [20].

The data were analyzed using SPSS Statistics for Windows (version 27.0; IBM Corp). The statistical significance level was set at α=.05 and normality of all variables was explored using the Shapiro-Wilk test. Normally distributed variables were assessed using parametric tests, whereas variables that did not follow a normal distribution were assessed using nonparametric tests. Descriptive variables were expressed as mean and SD for continuous variables and as count (n) and percentage (%) for categorical variables. BMI was calculated and presented according to the classification presented by Hurvitz et al [22].

For both the ECC and self-care domain of the CEDLM, the scaled scores (using the conversion tables) [16] were calculated. The chi-square test was used to assess whether the prevalence of the CP burden, the independence of the child, and the satisfaction of the caregiver differed across categories of sociodemographic factors. Because cutoff scores were not established for these questionnaires, a 50% cutoff was used for all the tools (scaled score of ECC ≤40=substantial burden; scaled score of CEDLM ≥50.2=independent child; score of SDO ≥56=satisfied with daily occupation). These suggested cutoffs were used to establish categorization for each tool and enhance interpretation of the tools. The established criteria enabled comparison between scales. Regarding the self-care domain of the CEDLM and ECC items, the independent 1-tailed t test, and Mann-Whitney U test were used to assess the difference in means across the questionnaire items. The relationship between the total score of each of the tools (ie, ECC, the self-care domain of the CEDLM, and SDO) was evaluated using Pearson correlation coefficients.

To the best of our knowledge, this is the first study to explore the challenges faced by families of children aged 5 to 16 years with CP in Kuwait, including the perceived level of ease of care, caregivers' satisfaction with daily activities, and the associations of these outcomes with other possible factors. Analyses showed that caregivers of children with CP in Kuwait reported an average level of ease of care and an above-average satisfaction level with their performance of different life activities. The analyses also showed that the higher perceived ease of care was only associated with the child’s hand functional level and the number of people involved in childcare. The level of perceived ease of care reported in the current study was similar to that reported by caregivers in different regions of the world (ie, Poland and Turkey) [9,23]. This demonstrated that despite cultural and socioeconomic differences, the burden of caring for a child with CP was comparable [4]. On the other hand, the number of people involved in childcare being a significant factor can provide insights into a unique element of the culture in Kuwait and the surrounding region, where extended family and domestic workers [24] are involved in childcare and can affect the level of burden of care. This is a testament to the “village” families create to care for their children, which shows resilience and the coping measures taken to help care for children with CP.

Additionally, around half of the samples in this study scored at levels I and II of the GMFCS, which represents a higher functional capacity of the child. Nevertheless, the self-care domain of the CEDLM was toward the lower end of the scale as a total score and for individual items in our sample. This could be caused by a lack of focus on building independence (ie, performing self-care activities), which would reduce the number of tasks falling under the caregiver’s responsibility. Factors such as children’s hand functional level, their self-care abilities, and the number of people involved in childcare were found in previous studies to be variables that decreased the perceived level of caregiver burden for children with CP [9,10,23].

Contrary to expectations, this study did not find any significant difference in caregivers’ ease of care level according to the child’s BMI or CP subtype, which does not align with findings presented in the literature [9,23]. This finding may be explained by the characteristics of the children with CP, the majority of whom were at GMFCS levels I to III (41/53, 77.4%) while previous research was conducted with children at higher GMFCS levels. Additionally, the dyskinetic type of CP (34/53, 64.2%) was the most common type in our study; therefore, a lack of heterogeneity in the types of CP may have contributed to the findings [9,23].

A distinctive parameter that this study investigated was caregiver satisfaction with their daily life activities, and the literature suggests that the level of burden impacts caregivers’ quality of life [8,25]. Our findings demonstrated that caregivers were active participants in most of their children’s daily activities and were somewhat satisfied with their daily occupations. The current investigation also found that the higher the perceived ease of care, the more satisfied the caregivers were. This might be explained by an indirect association between the extensive care required when having a child with CP and the perceived burden of care that could hinder caregivers from being active members of the community [10].

A qualitative study conducted among parents of children with CP in Saudi Arabia revealed that caregivers expressed being under stress and experiencing challenges in navigating health and educational services [26]. These parents also emphasized the role of Islamic values expressed through religious practices in helping them cope with stress and perceived burden. The Kuwaiti population shares similar values to the Saudi Arabian population. Although it produced different data from the current study, that work showed trends similar to those exhibited in our study. These findings showed the need for further exploration of the population in the Arabian Peninsula region.

Given the differences identified in the present study compared with the published literature on caregiver burden among this patient population, it could conceivably be suggested that caring for children with CP in Kuwait should not rely on Western evidence alone. In a recent systematic review on the epidemiology of CP in Arabic-speaking countries, no articles referencing this population were found in Kuwait [27]. Given the scarcity of research in this region, normative data should be established for this population as it is crucial for different communities to understand their populations to tailor treatments to their communities’ specific needs.

As is the case with every scientific endeavor, this study is not without its limitations. The main limitation is the small sample size recruited, which also limited further investigation of some possible related factors, such as lower GMFCS levels or different CP subtypes. The nature of the cross-sectional study design limits the establishment of causal relationships or changes over time. Another limitation is self-report bias, which limits the interpretation of the results. The recruitment of participants from rehabilitation clinics may have introduced selection bias, which could have excluded caregivers of children with a high functional level and children with a very low functional level. Future studies should focus on adapting these classification systems for Arabic-speaking individuals to enable the use of these tools for upcoming research studies on children with CP and their caregivers. Further exploration of the individuals involved in caring for children with CP is warranted in future studies, especially differentiating between hired help and family members.

CP is a lifelong health condition that requires special management and care throughout an individual’s life, impacting not only the individual with CP but also their family and primary caregivers. Caregivers might experience high levels of burden due to their assigned responsibilities, which could affect their life satisfaction. The preliminary perceived level of burden among caregivers of children with CP in Kuwait was correlated with caregivers’ daily activities satisfaction and the child’s self-care abilities. The findings of this study can inform practice in Kuwait and guide research advances in the region to improve care for caregivers of children with CP. Regular check-ins with caregivers and the establishment of caregiver support groups would help provide support sooner. Future studies with larger sample sizes and across multiple lifelong conditions would provide a clearer picture. Mixed methods strategies are encouraged in future studies to identify other contributing factors that may be unique to the region.