A cross-sectional survey was conducted using convenience sampling among eligible participants from the departments of neurology and rehabilitation at a tertiary hospital in Jiangsu Province. Inclusion criteria for patients were as follows: (1) diagnosed with stroke and exhibiting dysphagia; (2) a Functional Oral Intake Scale score of level 2 or above (14); and (3) dependent on others for feeding assistance. Inclusion criteria for primary caregivers were as follows: (1) aged 18 years or older; (2) the main family caregiver, not in a paid caregiving role; (3) continuously provided care for more than 1 week; (4) possessed normal cognitive and comprehension abilities, as determined by the trained clinical staff based on their ability to understand the study's purpose and procedures, and to provide informed consent; and (5) informed consent and voluntary participation in the study. Exclusion criteria for patients included (1) presence of severe comorbid conditions (e.g., organ failure); (2) patients requiring parenteral nutrition; and (3) patients fully dependent on enteral tube feeding. Exclusion criteria for caregivers were illiteracy or severe hearing impairment that prevented them from completing the survey. According to the rule of thumb that the sample size should be 5–10 times the number of questionnaire items, and accounting for a 20% attrition rate, a total of 286 questionnaires were distributed for this study (15).

A total of 268 valid questionnaires were included in the final analysis. The baseline demographic and clinical characteristics of the stroke patients with dysphagia and their primary caregivers are summarized in Table 1. The mean age of the patients was 66.36 ± 8.71 years, with a majority being men (59.0%). Most patients (80.6%) presented with post-stroke sequelae, and less than half (42.9%) had received specific dysphagia treatment. In terms of functional independence in daily activities, as measured by the Barthel Index, 58.6% of patients were moderately dependent.

Regarding the primary caregivers, their mean age was 53.82 ± 11.24 years, with a predominance of women (66.8%). Spouses constituted the largest relationship group (50.7%), followed by children (38.8%). A substantial proportion of caregivers (59.7%) had an educational level of junior high school or below. The caregiving duration varied, with 46.3% having provided care for over 1 month. The monthly household income was distributed across different levels, with 31.3% reporting an income between 3,001 and 5,000 RMB.

A total of 286 questionnaires were distributed, of which 268 valid questionnaires were returned after excluding invalid responses, yielding a valid response rate of 94%. The knowledge dimension had a total possible score of 16, with a mean score of 7.30 ± 4.07. The attitude dimension had a total score of 25, with a mean score of 19.70 ± 3.49. The practice dimension had a total score of 35, with a mean score of 19.56 ± 5.22. Item-level scores for each KAP dimension are shown in Table 2.

Table 2 presents the KAP scores of primary caregivers based on various demographic factors of both caregivers and patients. Regarding patient demographics, the presence of post-stroke sequelae significantly impacted caregivers' knowledge scores (P = 0.023); caregivers involved in dysphagia treatment exhibited markedly higher knowledge (P = 0.001) and practice scores (P = 0.001) compared with those not involved in such treatment. In terms of caregiver demographics, age emerged as a critical factor, with younger caregivers ( ≤ 50 years) showing significantly higher KAP scores across all measures (P < 0.001). Furthermore, educational attainment was strongly correlated with KAP scores, where caregivers with higher education levels (junior college or higher) scored significantly better in knowledge, attitudes, and practices (P < 0.001). Moreover, caregivers who were children of the patients scored higher in knowledge and practice compared with spouses or other relatives (P < 0.001). Further details are provided in Table 3.

The total KAP score was used as the dependent variable. Independent variables included those found to be statistically significant in the univariate analysis (i.e., variables showing significance in at least one of the three dimensions: knowledge, attitude, or practice). Stepwise regression was applied for variable inclusion and removal (α_entry = 0.05, α_removal = 0.10), and variables with significant interaction effects were excluded. Multiple linear regression analysis was conducted using the variable coding scheme, as shown in Table 4. The regression results are presented in Table 5.

In this study, the mean age of patients with post-stroke dysphagia was 66.36 ± 8.71 years, consistent with the known increase in cerebrovascular disease risk with advancing age (16), as well as the previously confirmed positive correlation between age and the incidence of dysphagia (17). In terms of sex distribution, a higher proportion of male patients was observed. This aligns with the findings obtained by Li et al. (17), who reported a higher incidence of post-stroke dysphagia in men. Most primary caregivers were either the spouse or children of the patient, with women accounting for 66.8% of caregivers. This is in line with the findings obtained by Liu et al. (18) and may reflect the influence of traditional cultural norms in China, where women are typically expected to manage domestic responsibilities. Additionally, personality traits such as attentiveness may make women more suited to caregiving roles compared with men. Regarding educational background, 59.7% of caregivers had only primary or junior secondary education. This is consistent with the survey conducted by Zhang (19) on home caregivers of patients with stroke in Zhengzhou. One possible explanation for this finding is that most of the caregivers in this study were middle-aged individuals, a generation for whom access to education was relatively limited, resulting in generally lower educational attainment.

Our study results showed that the mean score for caregiving knowledge among primary caregivers of patients with post-stroke dysphagia was 7.30 ± 4.07 out of a total of 16, indicating a moderate to low level of knowledge. This finding is consistent with those reported in previous studies (20). In the knowledge dimension, caregivers scored lowest on items related to dysphagia rehabilitation training, suggesting an inadequate understanding of this aspect of care. Similar findings were reported by Li et al. (21), who found that almost 50% of both patients and caregivers lacked knowledge of how to conduct rehabilitation training. Jiang et al. (22) also observed that caregivers often had limited knowledge of stroke rehabilitation, lacked the ability to perform basic training, and expressed a desire for professional guidance. These findings are consistent with the present study. A possible explanation for this lack is that dysphagia rehabilitation involves specialized techniques, and many healthcare professionals have limited training in this area. As a result, caregiver education in clinical settings is often superficial and insufficient. The inadequate caregiver knowledge observed in this study contradicts expert consensus guidelines, which recommend that family caregivers be actively involved in post-stroke rehabilitation. These findings highlight the urgent need to enhance caregivers' awareness and understanding of dysphagia rehabilitation. Healthcare professionals should prioritize targeted education and training to equip caregivers with the essential knowledge and skills needed to support effective rehabilitation at home.

The study results showed that the mean score for caregiving attitude among primary caregivers of patients with post-stroke dysphagia was 19.70 ± 3.49 out of a total of 25, indicating a moderately high level of caregiving attitude. This aligns with the survey results reported by Liu et al. (23). An item-level analysis of the attitude dimension revealed that the question “Do you think acquiring dysphagia care knowledge and skills can reduce complications like aspiration and pneumonia?” received relatively low scores. Previous studies (24) demonstrated that caregivers equipped with appropriate dysphagia care knowledge and skills can significantly improve patients' nutritional intake and feeding status, enhance quality of life, and reduce complications such as aspiration, choking, and pneumonia. However, our findings suggest that many caregivers do not fully recognize the impact of their own caregiving knowledge and skills on patient health outcomes. This might be explained by the fact that clinical health education efforts often focus primarily on the patients themselves, with less attention given to family caregivers. As a result, caregivers may lack awareness of their role in recovery and may not understand how their level of caregiving competence can influence patient prognosis.

The mean score for caregiving practices among primary caregivers of patients with post-stroke dysphagia was 19.56 ± 5.22 out of a possible 35, indicating a moderate to low level of caregiving practices. This finding is consistent with the results reported by McLennon et al. (25), who found that 75% of primary caregivers of patients with stroke lacked proper training, exhibited poor caregiving skills, and had unmet caregiving needs. Notably, the item “Do you actively seek dysphagia-related information through books or online resources?” received a particularly low score. This may be attributed to the fact that most caregivers in this study had only a primary or junior secondary education, which may limit their initiative or ability to seek disease-related information independently. Items such as “Can you assist the patient in clearing pharyngeal residue using compensatory swallowing techniques after meals?” and “Do you perform oral hygiene for the patient after each meal?” also scored poorly. This indicates that many caregivers lack awareness of the importance of removing oral residue and maintaining oral hygiene, consistent with the results obtained by Duan et al. (26), who reported that 69.4% of caregivers were unaware of proper oral care procedures. Similarly, the item “Do you assist the patient in performing basic swallowing rehabilitation exercises?” scored low. This may be associated with the requirements of specialized swallowing rehabilitation, which is typically provided by speech and language therapists. Many clinical healthcare providers themselves lack training in swallowing therapy techniques (27, 28), which may result in vague or insufficient guidance being provided to caregivers. Consequently, caregivers may struggle to understand or apply rehabilitation methods effectively. These findings suggest that to improve caregivers' engagement in the rehabilitation process, clinical healthcare professionals should not only educate them on specialized feeding techniques for dysphagia but also strengthen instruction on rehabilitation methods.

In this study, education level, caregiving duration, caregiver age, and whether the patient received dysphagia treatment were identified as significant factors influencing caregivers' KAP scores. Both age and education level are closely associated with an individual's ability to comprehend and adapt to new information. Previous studies have found that caregivers with higher educational attainment are more attentive to dysphagia care and treatment, more capable of understanding and accepting disease-related knowledge, and more likely to obtain relevant information through various channels (20). This study also showed that longer caregiving duration was associated with improved knowledge and changes in attitude and practices, consistent with prior findings (20). This is primarily because caregivers in the early stages of care tend to focus on acute symptoms such as cognitive or mobility impairments, paying less attention to swallowing difficulties. However, over time, as caregiving continues, they accumulate practical experience and gain a deeper understanding of caregiving knowledge and skills. Additionally, whether the patient received dysphagia rehabilitation notably affected caregiver KAP outcomes. Patients and caregivers who were involved in dysphagia treatment had greater opportunities to learn about rehabilitation strategies and techniques, providing caregivers with a foundational understanding to implement these methods during daily care. Supporting this, Eltringham et al. (29) found that effective communication during dysphagia rehabilitation enabled patients and their caregivers to better understand the pathophysiology of post-stroke dysphagia and the principles of rehabilitation therapy. In addition, a previous survey (27) revealed that many nurses lack training in dysphagia rehabilitation techniques, with 96% unaware of the role of speech–language pathologists in managing dysphagia. This deficiency may contribute to caregivers' inadequate understanding and application of dysphagia rehabilitation training. While structured training programmes on dysphagia management for healthcare professionals have been implemented in some countries, such initiatives remain limited in China. Therefore, hospitals should prioritize professional development and training for clinical staff in dysphagia rehabilitation methods.

This study found that while caregivers of patients with post-stroke dysphagia exhibited relatively positive attitudes, their knowledge and caregiving practices remained insufficient. Considering that patients with stroke often experience reduced ability to perform daily activities, caregivers serve as their primary source of support. As such, the KAP level of caregivers plays a crucial role in the comprehensive management of post-stroke dysphagia. Healthcare professionals should develop individualized and targeted health education interventions based on the identified influencing factors of KAP. Such interventions could enhance caregivers' KAP levels and caregiving competence, reduce their burden, and ultimately promote better rehabilitation outcomes for patients.