This study verified the validity and reliability of the CC-SC-CII-Korean which was developed to measure the contributions of caregivers to self-care for chronically ill patients.
Participants in this study differed from participants of the previous study in that parents of patients with chronic diseases are included. The average age of the patients in this study was 63.22 years (ranging from 18 to 82 years), and compared to the participants in the previous study (average age 76.6, ranging from 65 to 93 years), younger patients were included23. Nevertheless, the CC-SC-CII-Korean showed good validity and reliability among Korean caregivers for patients with chronic diseases. In the case of patients diagnosed with chronic diseases in childhood and adolescence, they perform self-care activities for the disease with support from their parents until young adults36. In other words, parents play an important role in caring for children with chronic diseases to adapt to the disease and maintain self-care behavior36,37,38. The results of this study confirmed the caregiver’s contribution scale to the self-care behavior of chronic diseases applies not only to middle-aged and old patients but also to young adult patients. However, it needs to be further validated in a larger sample and wider age range of care recipients in the future.
Securing equivalence with the original instrument is important in instrument translation for cross-cultural healthcare studies. The translation/back-translation process alone cannot guarantee translation equality28,39. A committee went through the translation verification process for instructions, items, and response formats of the reverse translation instrument to increase the validity of the evaluation scale. The role of committee members was to review translation inconsistencies, inappropriate expressions, and concepts that may arise during the research process and revise each phrase as required to fit the target culture and sentiment28. As a result, two items were modified to more familiar expressions among similar words to suit the Korean culture and healthcare environment. This was also implemented in previous studies that evaluated the understandability of the original text and addressed any inaccuracies or ambiguities in the content of the translated scale relative to the original text24.
The CFA was used for the validation of structural feasibility in construct validity. Results showed that the CC-SC-CII-Korean had three valid factors.
The original self-care maintenance factor included two dimensions: health-promoting behaviors (items 1, 3, 8) and illness-related behaviors (items 2, 4, 5, 6). On the CC-SC-CII-Korean, however, self-care maintenance (items 1, 2, 3, 4, 5, 6, 8) was identified as a single dimension. This result differs from the results of a previous study conducted in China24. This finding may be a cultural phenomenon that reflects Korean treatment standards.
In Korean caregivers, getting enough sleep, being physically active, managing stress, and eating healthy foods tailored to the disease are considered health-related behaviors for self-care maintenance. In other words, health-promoting behaviors and illness-related behaviors are considered the same concept rather than strictly separated. Health-promoting behaviors directly related to diseases such as Items #5 and #6 (taking prescribed medications, keeping appointments) fall under illness-related behaviors and may seem not essential for health-promoting behaviors, but in this study, all of them were the same. This is similar to the results of a study that found that chronically ill patients recognize regular physical activity, healthy eating habits, regular medical care, and compliance with prescription drug intstructions as self-care behaviors40,41. In addition, lack of sleep can have adverse health effects on patients with chronic diseases, so ‘sufficient sleep’ is not only a health-promoting behavior, but also an illness-related behavior42.This is similar to improved disease-related clinical outcomes (blood pressure, cholesterol levels, etc.) in which stroke survivors conducted illness-related health promotion activities such as daily physical activity, proper sleep time, stress management, and cholesterol-controlled food43. More research is needed to achieve a deeper understanding of the implications of this result.
On the CC-SC-CII-Korean, the monitoring factor (items 9, 10, 11, 12, 13) was found to be the same as the original instrument. These items were for monitoring the patients’ condition, treatment-related side effects, normal activities, and symptoms, as well as attention to mood changes in patients. The self-care monitoring of chronically ill patients involves not only systematic and continuous monitoring of the body, but also careful monitoring of psychological changes7,12. In Korean culture, patients rely on healthcare professionals’ direction, so a difference between maintenance and monitoring is expected. Caregivers are taught by healthcare professionals to monitor the patient’s health status, including weight, blood sugar, blood pressure, temperature, medication side effects, emotional changes, disease-related symptoms and disease-related health behaviors44.These results might reflect the benefits of education specifically on disease-related monitoring items for chronic disease patients and their family caregivers.
On the CC-SC-CII-Korean, management factor (items 14,15,16,17,18,19,20)—was found through CFA. The original instrument included two dimensions: autonomous behavior (items 14, 15, 16, 17, 20) and consulting behavior (items 18, 19). Autonomous behavior refers to behaviors that an individual chooses autonomously based on previous experiences when experiencing any symptoms. Consulting behavior represent behaviors that are encouraged by someone other than oneself, such as healthcare professionals23. This is somewhat different result from previous studies23,24. Our interpretation of the results of the one-dimensional model of this study sample is that in Korean healthcare culture, caregivers often consult and listen to advice from healthcare professionals. In addition, caregivers receive education in advance on necessary self-care actions, such as taking medications or changing diet and lifestyle, when a patient’s symptoms change43,45. As a result, autonomous behavior and consulting behavior are closely related. However, these results are from a sample in our study and further research is needed to confirm this factor structure.
This instrument demonstrated construct validity, and we found significant and strong correlations between caregivers’ self-efficacy and three caregivers’ contributions to self-care. Our finding was supported by relevant theory7, and the results were similar to the previous studies23,24. We demonstrated that the CC-SC-CII-Korean was a reliable instrument with adequate internal consistency.
The core of this research was the translation and validation of instruments that have not hitherto been available for use with informal caregivers who support patients with self-management of chronic conditions. The CC-SC-CII-Korean provides a comprehensive assessment of the caregiver’s contribution to self-care maintenance, monitoring, and management and helps caregivers detect potential gaps in these three areas. The CC-SC-CII-Korean could also assist health care providers and researchers in planning and implementing interventions for caregivers to improve self-care support for people with chronic conditions.
Self-care for chronic disease patients is a continuous process, and this instrument can both objectively monitor the caregiver’s contribution to the patient’s self-care and serve as a motivator for positive change.
The CC-SC-CII-Korean scale, which validity and reliability have been verified in this study, is expected to be useful in measuring the contribution of caregivers to self-care in chronic disease patients. However, this study has several limitations. First, the subjects of this study were recruited through convenience sampling among the family caregivers of chronic disease patients visiting university hospitals in Seoul and Yongin, which are relatively large cities in Korea. Therefore, caution is required when generalizing the results of this study, and in the future, repeated studies targeting family caregivers of chronic disease patients in various communities are required. Second, although the caregivers participating in this study included the possible range of family caregivers in Korean culture, it was not possible to identify differences in the contribution of caregivers to each patient’s self-care according to caregiver’s characteristics. However, previous studies conducted in other cultures have suggested that caregivers may differ depending on age, population, patient comorbidity, and culture, and in the future, dyadic research can be conducted among patients and family care providers to investigate their interactions and the effects of managing the chronic disease23,24. In addition, the amount of self-care required varies according to the number of chronic diseases, specific diseases, and severity46,47,48, therefore, future studies should analyze various diseases characteristics. Third, while the caregivers in our sample consisted of family members, further studies with informal caregivers who had various relationships with patients, including friends, neighbors, and colleagues, are needed.
In conclusion, this study shows that the CC-SC-CII-Korean has good validity and reliability and can be used in clinical and research studies to evaluate the contributions of caregivers to self-care for chronically ill patients in Korea. This instrument can measure the contribution of caregivers to patients’ self-care, which is significant given the annually increasing rate of chronic disease in Korea. This instrument also allows healthcare professionals to understand how well a caregiver contributes to better patient outcomes.