The caregiver contribution to self-care of stroke inventory (CC-SCSI): evaluation of psychometric characteristics

Based on the Middle Range Theory of Self-Care of Chronic Illness, self-care in the context of chronic diseases involves the active pursuit of health through health promotion strategies and disease management. It encompasses three essential components: self-care maintenance, self-care monitoring, and self-care management [6, 7]. Systematic review of quantitative studies have demonstrated that self-care could enhance medication adherence among stroke survivors, aid in the recovery of physiological and psychological functions, prevent stroke recurrence, and reduce hospital readmission rates, ultimately improving patients’ quality of life [8]. Furthermore, self-care empowers patients, providing them with a sense of accomplishment and perceived control over the rehabilitation process, leading to increased happiness and well-being [9, 10].

Research has shown that out of the 8760 hours in a year, stroke survivors spend an average of only about 10 hours, or 0.001%, of their time with healthcare professionals [5]. This indicates that the majority of activities related to health maintenance, monitoring, and management are carried out by the patients themselves or in collaboration with their caregivers in an outpatient setting. Self-care in patients with chronic diseases is significantly dependent on the support and assistance provided by caregivers [5, 11]. This relationship is theoretically termed as caregiver contribution to self-care. And it encompasses the process in which caregivers oversee or aid patients in executing self-care actions aimed at sustaining disease stability and symptom management [11]. Caregivers play a crucial role in supporting stroke survivors by providing personal care, emotional support, and practical assistance [12]. They serve as reminders, supervisors, and motivators in the patients’ self-care process. Consequently, the caregiver contribution to self-care of stroke significantly influences their overall health outcomes, underscoring its undeniable importance.

Developing self-care assessment instruments based on the middle range theory of self-care in chronic illness has been highly recommended [13]. Our previous research resulted in the development of the Self-Care of Stroke Inventory, which has demonstrated robust reliability and validity [4]. However, there are currently a limited number of tools available to measure the caregiver contribution to patient self-care. For instance, the Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI) is a 22-item instrument specifically designed to measure the caregiver’s contribution to self-care in heart failure patients [14]. Similarly, the Caregiver Contribution to Self-Care in Ostomy Patient Index (CC-OSCI) is a 22-item instrument developed to measure the caregiver’s contribution to self-care in individuals with colostomy and urostomy [15]. It evaluates the dimensions of self-care maintenance, monitoring, and management in this population. Additionally, the Caregiver Contribution to Self-Care Chronic Illness Inventory (CC-SC-CII) assesses caregiver contribution to self-care in individuals with chronic illnesses such as heart failure, diabetes mellitus, chronic obstructive pulmonary disease (COPD), hypertension, asthma, osteoporosis, and kidney failure [16]. Stroke survivors often face various physical, cognitive, and emotional challenges that distinguish them from patients with other chronic conditions, so the caregiver contribution to self-care of stroke differ from caregiver contribution to self-care of other chronic patients [5, 17]. Based on the existing tools, there is a clear gap in assessing the caregiver contribution to self-care specifically tailored for stroke caregivers.

Caregivers play a significant role in self-care of stroke, but there is currently a lack of suitable instruments to quantify this contribution and understand its relationship with other health-related variables in the stroke population. Accurately measuring the caregiver contribution to self-care of stroke could help explore the specific relationship between patient self-care and caregiver contribution to self-care in the context of dyadic self-care [17]. And it could also clarify impact factors of the caregiver contribution to the self-care of stroke and allow for the examination of the effectiveness of dyadic self-care interventions for stroke patients and caregivers to enhance the refinement of intervention strategies [17, 18]. Consequently, based on our previous tool used to access self-care of stroke survivors [4], it is crucial to develop a corresponding assessment instrument specifically measure the caregiver contribution to self-care of stroke.

The aim of this study was to test and validate the psychometric properties of the caregiver contribution to self-care of stroke Inventory (CC-SCSI).

A cross-sectional, mixed methods research design was adopted, involving the collection of quantitative and qualitative data. Participants were recruited in Henan Province from March 2021 to October 2022 utilizing a multicenter stratified sampling approach to collect quantitative data. Five cities were randomly selected from each of the Eastern, Western, Southern, Northern, and Central regions of Henan Province in China. Within the five selected cities, five administrative districts were randomly chosen. From these five administrative districts, research subjects who met the inclusion criteria were selected for the questionnaire survey. Quantitative data enabled calculation of construct validity, discriminant validity, concurrent validity, convergent validity and reliability of the instrument. The qualitative data presented reflections from respondents, offering feedback regarding the challenges they encountered while using it and providing valuable suggestions for improvement.

The Self-Care of Stroke Inventory (SCSI) is a measure of self-care in stroke survivors developed in our previous study [4](Supplementary file 1). It includes 23 items divided into three separate scales: self-care maintenance (9 items), self-care monitoring (6 items), and self-care management (8 items) scales. In the context of this study, the Caregiver Contribution to Self-Care of Stroke Inventory (CC-SCSI) designed in Simplified Chinese was based on the Self-Care of Stroke Inventory (SCSI) to make it applicable for measurement within the caregiver population (Supplementary file 2). The CC-SCSI is also a 23-item instrument that measures the caregiver contribution to self-care of stroke. Each item uses a 5-point Likert scale for responses from “Never” to “Always”. Higher scores indicate a higher level of self-care contribution. The CC-SCSI aligns with the SCSI in item number and content but differs in questioning format, providing an accurate and comprehensive measure of the caregiver contribution to self-care of stroke.

The potential participants were identified and recruited from the community with the guidance of the staff from community health service centers in 5 cities across Henan Province. Eligibility criteria for stroke caregivers in this study included the following: (1) the patients they care for are individuals who have been definitively diagnosed with stroke, as documented in medical records; (2) The patients being cared for have stable medical conditions and no significant cognitive impairments (as assessed by the Mini-Mental State Examination, with an MMSE score of ≥21 points); (3) Informal caregivers (such as spouses, children, parents, etc., of the patients) who have been continuously caring for stroke survivors for more than 1 month; (4) aged 18 or above; (5) Demonstrating adequate cognitive and communication abilities to provide informed consent and participate in the survey.

A questionnaire was used to obtained general information, including age, gender, relationship with the patient, marital status, educational level, employment status, daily caregiving duration, total caregiving duration, presence of any chronic illnesses, etc. The surveyors in this study were trained individuals who were not directly involved in the research process. There was no personal or vested interest between the surveyors and the participants, ensuring the objectivity and integrity of the research. They clearly communicated the purpose and significance of the study to the participants, ensuring their voluntary participation and guaranteeing anonymity and confidentiality. Surveyors diligently reviewed the questionnaires for completeness and promptly addressed any concerns or provided clarifications either during face-to-face interactions or through phone conversations. In addition, for the qualitative research aspect, a semi-structured interview method was utilized. These interviews were conducted after the completion of the questionnaire survey, and the point of data saturation determined when the interviews were concluded.

Questionnaires were consolidated into a single database using IBM SPSS Statistics version 25. Confirmatory factor analysis (CFA) was conducted using AMOS 24.0.

This study was approved by the Research Ethics Committee of Zhengzhou University (ZZUIRB2021–115). Participation was voluntary, and no identifiable data were gathered, so anonymity and confidentiality were assured. All participants provided their consent to participate either in written or verbal form.

Among the 574 eligible caregivers identified by the researchers, 530 (92.5%) agreed to participate and successfully completed the questionnaires, while 44 (7.5%) declined to participate due to reasons such as lack of time or interest. A total of 60 out of the 530 stroke caregivers indicated their interest and participated in the retest to assess the test-retest reliability of the scale. Table 1 presents the characteristics of the participants (n = 530). A significant majority of stroke caregivers were female (74.0%), married (95.3%), and either resigned, unemployed, or retired (75.4%). Additionally, 72.1% had a spousal relationship with the patient, 66.8% reported a daily care duration exceeding 8 hours, and 64.3% did not have any chronic diseases. More than half of the stroke caregivers (63.2%) had an educational background of junior high school or below, with 39.4% having a junior high school education and 23.8% having primary school education or below. Table 1 presents the demographic characteristics of the participants. In addition, on average, stroke survivors were more than 10 years older than their caregivers and most were male (72.5%).

In the Caregiver Contribution to Self-Care Maintenance scale, the Cronbach’s α of the scale was 0.884, with each dimension of the scale having Cronbach’s αs ranging from 0.876 to 0.918. The test-retest reliability showed an average measure of ICC of the Caregiver Contribution to Self-Care Maintenance scale as 0.903 (95% CI [0.798–0.954], P < 0.001). For the Caregiver Contribution to Self-care Monitoring scale, the overall Cronbach’s α was 0.974. The test-retest reliability had an average measure of ICC of the Caregiver Contribution to Self-care Monitoring scale at 0.855 (95% CI [0.698–0.931], P < 0.001). Regarding the Caregiver Contribution to Self-care Management scale, the Cronbach’s α of the scale was 0.910, and each dimension of the scale had Cronbach’s αs ranging from 0.916 to 0.931. The test-retest reliability yielded an average measure of ICC of the Caregiver Contribution to Self-care Management scale as 0.828 (95% CI [0.641–0.918], P < 0.001). The results of this analysis are presented in Table 3.

This study conducted interviews with 15 caregivers and obtained reflections and experiences on the use of the instrument through an interview guide including several open-ended questions (Supplementary file 3). Through thematic analysis, three main points were distilled, as shown in Table 4. Based on caregivers’ feedback, the following modifications were made to the questionnaire. Provide explanations for some items that were difficult to understand, such as revising item 2 to “ Item 2 Recommend /help the patient to maintain over 30 minutes mild or moderate physical activity 3 or more times a week ( e.g. continuous walking, stair climbing) “. Include reminders when distributing the questionnaire to avoid misconceptions, for example, for item 7, emphasize that “take medicines following the doctor advised” not only refers to taking medication on time but also involves aspects like avoiding missed doses or self-adjusting medication dosage. Consider using Mandarin, dialects, or plain language depending on the participants’ preferences when administering the questionnaire.

The Caregiver Contribution to Self-Care of Stroke Inventory (CC-SCSI) is comprised of 23 items, organized into 7 dimensions and 3 independent scales. All items are rated on a 5-point Likert scale, where 1 represents “never” and 5 represents “always.” Each CC-SCSI scale is assigned a standardized score ranging from 0 to 100. The Caregiver Contribution to Self-Care Maintenance scale consists of 3 dimensions with a total of 9 items, and the total score = (sum of items 1 to 9–9) × (100/36); The Caregiver Contribution to Self-Care Monitoring scale contains 1 dimension comprising 6 items, and the total score = (sum of items 1 to 6–6) × (100/24); The Caregiver Contribution to Self-Care Management scale is made up of 3 dimensions with a total of 8 items, and the total score = (sum of items 1 to 8–8) × (100/32). The CC-SCSI could be used to assess the current level of caregiver contribution to self-care of stroke survivors. A higher scale score indicates a greater level of caregiver contribution to the self-care of stroke survivors.

The study has several limitations. Firstly, the research did not employ random sampling to collect samples and test the reliability and validity of the Stroke Caregiver Self-Care Contribution Scale, which may have impacted the reliability of the assessment tool to some extent. However, the study attempted to select stroke caregivers from diverse regions, which improves the generalizability of the research findings to some degree. Secondly, the qualitative research component only served as a supplementary part to the quantitative findings, without deeply integrating and discussing the two aspects. Lastly, the included caregivers in the study provided care for stroke patients with varying durations of illness, and future research could examine the tool’s reliability separately at different stages of the illness trajectory.

The findings of the study have substantial implications for clinical practices in stroke care. Healthcare professionals should acknowledge the crucial role of caregivers in supporting stroke survivors’ self-care and develop targeted interventions to address specific areas where caregivers may need additional support. Providing caregiver education and training on accessing relevant stroke-related information, monitoring complications, and promoting emotional well-being may help to enhance stroke self-care. Integrating the CC-SCSI into routine clinical assessments enables healthcare professionals to measure the caregiver contribution to stroke self-care regularly. Monitoring the caregiver contribution over time facilitates timely intervention and additional support as needed. Encouraging open communication and collaboration between caregivers and stroke survivors fosters a more supportive and effective self-care partnership. Moreover, recognizing the interconnectedness between stroke survivors and caregivers highlights the importance of adopting a dyadic approach to self-care in interventions.