Abstract
Aim
To assess the level and determinants of self-care agency (SCA) among patients with Type 1 diabetes mellitus.
Methods
A descriptive cross-sectional design was used to collect data from 128 participants via an online survey. Participants were conveniently recruited from diabetes clinics in two major hospitals (one public, one teaching) in Jordan's largest cities. Data were collected using the Appraisal of Self-Care Agency Scale-Revised (ASAS-R), Diabetes Self-Efficacy Scale, and Diabetes Self-Management Scale. Descriptive statistics, t-tests, ANOVA, and Pearson correlation were used. Data collection occurred from October 2019 to January 2020.
Results
Participants showed a relatively high level of SCA (74.1%, M = 55.5/75, SD = 6.87). Significant differences in the ASAS-R “lacking power” subscale were found based on marital status (t = 2.39, p = .018), with single participants scoring higher (M = 2.84) than married (M = 2.44), and comorbidity status (t = 3.69, p < .001), with those without comorbidities scoring higher (M = 2.96) than those with (M = 2.43). No correlations emerged between ASAS-R scores and continuous demographics, except a negative correlation between “lacking power” and age (r = –.191, p < .05). ASAS-R total scores correlated significantly with diabetes self-efficacy (r = .543, p < .001) and self-management (r = .566, p < .001), but not with demographics.
Conclusion
Participants had high SCA, especially in developing power, though lower scores were seen in “lacking power.” Age, marital status, and comorbidities influenced this subscale. Higher SCA was associated with greater self-efficacy and self-management, underscoring its importance in diabetes care.
Introduction
The increasing global burden of chronic illnesses has elevated the importance of self-care as a cornerstone of long-term disease management. Among these conditions, type 1 diabetes mellitus (T1DM) stands out as a complex, lifelong disease requiring daily commitment to self-management behaviors. Individuals diagnosed with T1DM—often during childhood or adolescence—must develop the ability to independently perform the required self-care behaviors. These demands highlight not only the biomedical aspects of diabetes care, but also the psychological and behavioral capacity of patients to manage their condition. In this context, the concept of self-care agency (SCA)—a person's learned capacity to care for their own health—becomes central to diabetes outcomes.
Although SCA has been acknowledged in nursing theory and practice, its role among patients with T1DM has received relatively little empirical attention, particularly in low- and middle-income countries. In Jordan, where the prevalence of diabetes is rapidly rising and where healthcare systems are under pressure to deliver sustainable chronic care, understanding the factors that influence SCA is both timely and necessary. This study responds to that need by examining the level of SCA among Jordanian individuals with T1DM and identifying key demographic and psychosocial determinants. By doing so, it aims to inform nursing-led interventions that support self-care capacity and promote better disease control in this vulnerable population.
Review of Literature
According to the World Health Organization (WHO, 2020), diabetes mellitus (DM) ranks as the ninth leading cause of death worldwide. It is a chronic condition characterized by insufficient insulin production—none in T1DM, which primarily affects younger individuals, and reduced levels in type 2 DM (T2DM), more common among older adults—leading to elevated blood sugar levels. Globally, the International Diabetes Federation (IDF) reported 8.75 million people living with T2DM, including 1.52 million under the age of 20 (Ogle et al., 2022a, 2022b). New cases continue to rise, with 530,000 diagnoses annually across all ages, of which 201,000 are in those younger than 20. The Middle East and North Africa (MENA) region has the second highest DM prevalence worldwide (IDF, 2019), with 1.9 million T1DM patients in low- and lower-middle-income countries (Ogle et al., 2022a, 2022b). As part of MENA, Jordan faces a high DM prevalence—16.0% in 2020, projected to increase to 20.6% by 2050—accounting for 25.2% of the nation's health expenditure (Awad et al., 2020). Ogle et al. (2022a, 2022b) report that Jordan currently has 6,344 individuals diagnosed with T1DM.
As a chronic condition, effective self-care is essential for patients to reduce complications and improve health outcomes. This involves a lifelong commitment to activities such as diet management, exercise, medication adherence, foot care, and blood glucose monitoring (Darawad, Hammad, Mosleh, et al., 2017; Hammad et al., 2014; Subih et al., 2023). Orem's (1995) theory defines self-care as actions individuals perform for their own benefit to maintain life, health, and well-being. It is a continuous process requiring individuals to develop self-determination and act as “self-care agents,” taking responsibility for their health assessment and behaviors. Orem introduced the concept of SCA as “the acquired, complex capacity to meet the requirements to take care of oneself, regulating life processes, maintaining or promoting integrity, structure, and functioning, as well as one's development and promotion of well-being” (p. 20). This capacity thrives with a supportive nursing approach that fosters a strong patient–nurse relationship. The nurse should demonstrate empathy and encourage patients to develop self-awareness about their health, empowering them to become “self-care agents” who actively make informed decisions regarding their condition (Jerawatana and Siripitayakunkit, 2016), can be accomplished by equipping patients with the necessary knowledge and skills training, as education positively influences SCA and, consequently, self-care (Jerawatana & Siripitayakunkit, 2016; Masadeh & Saleh, 2023).
SCA has been identified as a key predictor of self-care management among patients with T1DM (Masadeh et al., 2024; Salem et al., 2025). Studies show that patients with T2DM who report higher levels of SCA are more consistent in performing self-care activities, while those with lower SCA often struggle to manage their disease effectively (Eddings, 2012). SCA positively influences patients’ commitment to self-care behaviors, leading to better management, improved clinical outcomes, and reduced emergency visits and hospitalizations (Katz et al., 2012). Moreover, the literature highlights the essential role of SCA in enhancing glycemic control, medication adherence, and overall quality of life (Afshar et al., 2014; Rahmani et al., 2018). Therefore, effective self-care in T1DM requires an adequate level of SCA combined with psychological balance (Darawad, Hammad, Samarkandi, et al., 2017).
Despite the clinical importance of SCA in managing T1DM, it remains understudied, particularly among patients with T1DM. Most existing research has focused on individuals with T2DM (Gharaibeh et al., 2016; Sousa & Zauszniewsk, 2006) or other chronic conditions (Alnajar et al., 2024; Surucu et al., 2017). Few studies have examined the interrelationships among SCA, self-efficacy, and self-care management (Eddings, 2012; Sousa & Zauszniewsk, 2006). While some research has explored demographic and psychosocial correlates of SCA—such as age, gender, education, and illness duration (Rahmani et al., 2018; Sousa & Zauszniewsk, 2006)—such studies are still limited in the Middle East and nearly absent in Jordan, to the best of the authors’ knowledge.
There has been limited attention given to SCA, with no prior studies exploring it in the Jordanian context. This gap is particularly significant given the rising prevalence of T1DM (Ogle et al., 2022a, 2022b). Since T1DM primarily affects individuals at a younger age, understanding its impact on diabetes self-management becomes essential—especially when compounded by inadequate SCA. Gaining insights into the factors that influence SCA in this population is vital for designing effective interventions and educational initiatives, particularly those led by nurses and other healthcare professionals (HCPs), to enhance diabetes care outcomes. Nurses, in particular, are well-positioned to support and promote patients’ SCA in alignment with their demographic and psychosocial background (Rahmani et al., 2018). Accordingly, this study aims to fill the gap by evaluating the level of SCA and examining its determinants among Jordanian patients with T1DM. Specifically, it seeks to answer the following questions:
What is the level of SCA among Jordanian patients diagnosed with T1DM? What are the items of SCA that Jordanian patients diagnosed with T1DM possess more? Are there significant differences in Jordanian T1DM patients’ level of SCA based on their demographics? Are there significant correlations among SCA (total and subscales) and diabetes self-care efficacy and diabetes self-care management among Jordanian patients diagnosed with T1DM?
Methods
Design and Setting
This study is part of a larger research project that used a descriptive cross-sectional design. Data were collected through an online survey created using Google Forms. Participants were recruited from diabetes clinics at two major hospitals in Jordan (one public and one teaching) from different regions in Jordan, which allowed for diverse participation and increased the generalizability of the findings.
Sampling
A non-probability convenience sampling approach was employed to recruit participants for the study. Eligible participants were those who: (1) were between 18 and 30 years of age, (2) had been diagnosed with T1DM for a minimum of six months, and (3) were able to use a smartphone to complete the online survey. Individuals with significant physical, mental, or cognitive impairments were excluded from participation. The required sample size was calculated using G*Power version 3.1.9.2. Based on an 80% power, a medium effect size of 0.25, a significance level of .05, and analysis using ANOVA, the minimum estimated sample size was 128 participants.
Instruments
Demographic data sheet: Participants were asked to report on their age, gender, level of education, marital status, employment status, income, smoking status, and comorbidities.
The Appraisal of Self-Care Agency Scale-Revised (ASAS-R) was used to assess participants’ ability to engage in self-care activities related to disease management (Sousa et al., 2010). This 15-item scale includes three subscales: having power (6 items), developing power (5 items), and lacking power (4 negatively stated items). It employs a 5-point Likert scale ranging from 1 (Totally Disagree) to 5 (Totally Agree), with a total score range of 15–75, where higher scores indicate greater levels of SCA. Sousa et al. (2010) confirmed the instrument's construct validity through factor analysis, supporting a 3-factor model that accounted for 61.7% of the variance in a general population sample. The reported Cronbach's alpha was 0.89 for the total scale and ranged from 0.79 to 0.86 across subscales. Similarly, Oliveira et al. (2022) applied the Portuguese version of the ASAS-R to a sample of Portuguese medical students, reporting a Cronbach's alpha of 0.85 for the total scale and 0.55–0.83 for the subscales.
Diabetes Self-Efficacy Scale (DSES): To measure participants’ level of confidence in performing specific activities and behaviors related to disease management, the DSES was utilized (Sousa et al., 2009). The DSES consists of 60 items distributed across seven subscales: eating healthy foods (15 items), activity (6 items), blood glucose monitoring (7 items), adherence to medication regimen—specifically insulin (6 items), foot care (7 items), problem solving (4 items), and reducing risks (15 items). It uses a 6-point Likert scale ranging from 0 (Strongly Disagree) to 5 (Strongly Agree), yielding a total score range of 0–300, with higher scores reflecting greater self-efficacy in performing the specified activities. Content validity for the DSES was established by Sousa et al. (2009), with a scale-level index of 0.97 and item-level indices ranging from 0.8 to 1.0.
Diabetes Self-Management Scale (DSMS): To measure participants’ actual performance of specific activities and behaviors in managing their DM, the DSMS was used, which is based on Orem's Theory of Self-Care (Sousa et al., 2009). The DSMS consists of 60 items covering the same activities, categories, and scoring system as the DSES. It uses a 6-point Likert scale, with total scores ranging from 0 to 300, where higher scores indicate greater adherence to self-care activities and thus better self-care management. Sousa et al. (2009) reported strong content validity for the DSMS, with a scale-level index of 0.96 and item-level indices above 0.78.
The study instruments were translated from English to Arabic following the WHO (2018) guidelines for translation and adaptation of instruments. This process involved a forward translation from English to Arabic, followed by a back-translation into English by an independent translator. Both versions were then compared and reviewed to ensure conceptual and linguistic equivalence. Subsequently, a pilot test was conducted to finalize the Arabic versions of the scales. The pilot aimed to assess the clarity and comprehensibility of the items, evaluate the feasibility of the study procedures, and identify any technical issues related to the online survey link.
Data Collection
After obtaining the necessary ethical approvals, visits were made to the diabetes clinics at the participating hospitals. Nurse managers were interviewed to explain the study's purpose and procedures, and their permission was obtained to approach potential participants. Eligible patients were identified through brief interviews and invited to participate voluntarily by signing informed consent. The online survey link, containing the study materials, was then sent to participants’ phones to complete during their clinic waiting time. Completing the survey took approximately 15–20 min, with a data collector available to answer any questions. Data collection occurred over a three-month period, from October 2019 to January 2020.
Ethical Considerations
The ethical approvals were granted from the University of Jordan (10/7/2019- No number) and the Ministry of Health (MOH REC 1800138, 9/10/2019). This study was conducted in accordance with the principles outlined in the Declaration of Helsinki.
Data Analysis
After data entry and screening were completed, data analysis was performed using the Social Package for Social Sciences (SPSS-Version 25) with a significance level set at < .05. Descriptive statistics (means and standard deviations) were used to address the first and second research questions by describing the individual items, subscales, and total score of the ASAS-R (15 items). To examine differences in participants’ SCA scores based on demographic variables (research question 3), independent sample t-tests and one-way ANOVA were conducted according to the level of each variable. Finally, Pearson correlation tests were used to evaluate the relationships between SCA total and subscale scores and participants’ scores on the DSES, as well as continuous demographic variables (age, income, and duration of diabetes).
Results
Participants’ Characteristics
Out of 176 invited patients, 128 participants accepted participation and 48 participants refused (response rate = 72.7%). Refusal was for many reasons, including time and fear of knowledge by reading the questionnaire. As seen in Table 1, participants’ mean age was 23.4 years (SD = 4.09), and mean duration of disease was 115.5 months (SD = 80.1). In general, the majority of participants were females (58.6%, n = 75), singles (74.2%, n = 95), unemployed (67.2%, n = 86), educated with less than high school (46.9%, n = 60), with an income less than 500 JOD (73.5%, n = 92), non-smokers (69.5%, n = 89), had no DM comorbidities (58.6%, n = 75), and reported receiving health education about DM (91.4%, n = 117).
Description of Sample Demographic Variables (N = 128).
JOD = Jordanian Dinar.
Participants’ Scores on ASAS-R
Participants reported a relatively high level of SCA that was 74.1% (M = 55.5/75, SD = 6.87). As shown in Table 2, comparing the scores of the ASAS-R subscales indicated that Developing Power had the highest mean score (M = 4.08/5, SD=0.58), while lacking power had the lowest mean score (M = 2.73/5, SD=0.83). Regarding the individual items of the ASAS-R, the item that had the highest score was item 5 “I look for better ways to care for myself” (M = 4.22/5, SD = 0.72) followed by item 7 “If I take a new medication, I obtain information about the side effects to better care for myself” (M = 4.15/5, SD = 0.89). On the other hand, the item that had the lowest score was item 4 “I often lack the energy to care for myself in the way that I know I should” (M = 2.36/5, SD = 1.07), preceded by item 15 “I am not always able to care for myself in a way I would like” (M = 2.65/5, SD = 1.2).
Participants’ Means on Self-Care Agency Scale (Total & Subscales).
SCA = self-care agency; SCA-R = self-care agency-reversed.
Comparing Participants’ Scores on ASAS-R Based on Their Demographics
A series of t-tests and ANOVA were run to compare participants’ scores on ASAS-R based on their demographics (Question 3). As shown in Table 3, analysis found no significant differences in the ASAS-R total scale and the subscales of having and developing power. However, significant differences were found in participants’ scores on lacking power scale is based on marital status (t = 2.39, p = .018) where single participants had greater scores (M = 2.84) than married (M = 2.44). Similarly, having comorbidities with DM had significant difference (t = 3.69, p = .000) where participants with no comorbidities had greater scores (M = 2.96) than their counterparts (M = 2.43). Similarly, using Pearson correlation, no correlation was found among the ASAS-R scores and participants’ continuous demographics except a significant negative correlation between Lacking Power subscale with participants’ age (r = −.191, p < .05), where older patients had more lacking power.
Comparison of Participants’ Scores on Self-Care Agency Scale Based on Their Demographics.
Note: The category with * was used as a reference for comparison.
SCA = Self-care agency.
**Significant at p < .05.
Concerning the correlation of participants’ diabetes SCA with their diabetes self-care efficacy (Question 4), Pearson correlation was also used. As shown in Table 4, diabetes self-care efficacy was found to positively correlate with ASAS-R total scale (r = .543, p < .01), and two of its subscales including Having Power (r = .537, p < .01) and Developing Power (r = .529, p < .01). Similarly, diabetes self-care management was found to positively correlate with ASAS-R total scale (r = .566, p < .01), and all of its subscales including Having Power (r = .516, p < .01), Developing Power (r = .511, p < .01), and Lacking Power (r = .181, p < .05).
Correlations of SCA (Total & Subscales) With Study Variables.
*p < .05; ** p < .01.
SCA = self-care agency; BMI = body mass index.
Discussion
The present study evaluated the level and determinants of SCA among Jordanian patients with T1DM, recognizing SCA as a foundational factor in effective DM self-management. The overall SCA score in the current study (74.1%) was relatively high compared with previous research. For example, Rahmani et al. (2018) reported a much lower SCA level (40.3%) among adolescents with T1DM, and Surucu et al. (2017) found a moderate level (62.2%) among older adults. This discrepancy may reflect demographic differences, particularly the younger age range of the current sample (18–30 years). Prior studies indicate that younger adults often report more motivation, technological engagement, and willingness to adopt new strategies in health management compared to older groups (Moore et al., 2013; Wang et al., 2024). However, adolescence is also characterized by developmental challenges and reduced metabolic control (Moore et al., 2013), suggesting that the transition into early adulthood may provide an important window for fostering strong SCA. These findings highlight the need for age-sensitive interventions that maximize younger adults’ readiness for self-care, while also supporting their psychosocial adaptation to living with T1DM.
Educational interventions remain central to improving SCA. Surucu et al. (2017) demonstrated that targeted DM education significantly improved self-care capacity, while Fereidooni et al. (2024) confirmed the role of structured training programs in strengthening patients’ sense of empowerment. Nevertheless, the effectiveness of such interventions depends not only on patient readiness but also on healthcare providers’ competencies. Previous studies in Jordan revealed that nurses’ knowledge and attitudes toward diabetes management were suboptimal (Yacoub et al., 2014), underscoring the necessity of enhancing professional training to ensure accurate, supportive, and patient-centered education (Yacoub et al., 2015). Therefore, improving both patient SCA and providers’ competencies should be viewed as complementary strategies for better outcomes among patients with diabetes.
Analysis of the subscales revealed that “Developing Power” scored highest, whereas “Lacking Power” scored lowest. This pattern suggests that participants felt relatively optimistic and motivated about their ability to manage their illness but continued to perceive barriers and limitations. Similar to findings by Ishak et al. (2017), barriers such as insufficient knowledge, emotional distress, and lack of social support remain significant predictors of reduced self-care. Fatigue—arising from disease burden, disrupted sleep, and depressive symptoms—has also been consistently associated with diminished self-care engagement (Kuo et al., 2023). Conversely, supportive family and social networks positively reinforce patients’ perceptions of self-efficacy and power, leading to stronger adherence (Cook et al., 2020; Umeda et al., 2020). Thus, psychosocial support structures should be integrated into diabetes care, alongside education, to bolster patient empowerment.
Interestingly, the highest-rated items in this study reflected participants’ efforts to seek better strategies for self-care, while the lowest-rated items related to recognizing gaps between actual and ideal practices. This finding suggests that while participants were motivated and future-oriented, they may underestimate deficiencies in their current regimens. Similar patterns have been noted in studies of younger populations, where optimism and perceived invulnerability can obscure recognition of risks (Loseby, 2021). Health professionals should therefore adopt balanced educational approaches that both encourage motivation and realistically address existing gaps.
Regarding demographic influences, our results showed no significant differences in overall SCA based on sociodemographic factors, except for “Lacking Power,” which was significantly associated with marital status, comorbidities, and age. Married participants reported lower “Lacking Power,” supporting evidence that spousal support enhances emotional coping and adherence to treatment (Hasan et al., 2024). Likewise, patients with comorbidities exhibited lower “Lacking Power,” which may indicate heightened vigilance and family support in managing complex health conditions. Older participants also reported less “Lacking Power,” consistent with previous findings that accumulated experience improves disease management (Kiadaliri et al., 2013). In contrast, other studies have found associations between overall SCA and gender, education, illness duration, and insulin therapy (Rahmani et al., 2018; Umeda et al., 2020). These discrepancies highlight the importance of cultural and contextual factors, suggesting that self-care behaviors may be shaped not only by individual demographics but also by social norms, healthcare system differences, and available resources.
The positive correlations observed between SCA, self-efficacy, and self-care management reinforce the conceptual link between agency and behavioral outcomes. Patients with higher self-efficacy are more likely to perceive themselves as capable of disease management, translating into better adherence and lifestyle regulation (Eddings, 2012; Salem et al., 2025; Schoenthaler et al., 2009). Prior studies have also reported associations between SCA and improved quality of life, glycemic control, and medication adherence (Afshar et al., 2014; Rahmani et al., 2018). Furthermore, Nuari (2018) showed that SCA was negatively correlated with diabetes-related burnout, underscoring the psychological benefits of fostering self-care capacity. These findings collectively emphasize the role of SCA as both a determinant and an outcome of effective diabetes self-management.
Implications for Practice
This study highlights the importance of supporting SCA in young adults with T1DM. The relatively high SCA levels observed suggest a strong foundation for HCPs, particularly nurses, to build on through tailored education and empowerment strategies. Structured self-care programs that enhance self-efficacy and motivation can help sustain healthy behaviors, especially in this age group facing developmental and psychosocial challenges. Given the impact of nurse knowledge and attitudes on patient outcomes, improving provider training in diabetes care is also crucial.
Participants scored highest on Developing Power and lowest on Lacking Power, indicating a readiness to engage in self-care but with some perceived limitations. Addressing barriers like emotional distress, fatigue, or insufficient support is essential. Involving family and promoting social support can enhance patients’ sense of capability and adherence. Additionally, variations in SCA by age, marital status, and comorbidities point to the need for individualized care plans. Younger, unmarried patients may require more guidance, while older or comorbid individuals may benefit from integrated support. Finally, the positive associations between SCA, self-efficacy, and self-care management underscore the value of assessing and enhancing these factors in routine care. Boosting patients’ confidence and awareness can improve outcomes and should be a central focus of diabetes education and chronic care management.
Strengths and Limitations
This study uniquely explored SCA and its correlates among adult patients with T1DM, a group that has received limited attention in the literature compared to adolescents with T1DM or adults with T2DM. Few studies have focused on SCA among patients with diabetes in general, and even fewer have examined this construct in adults with T1DM specifically. Notably, this is the first study of its kind conducted in Arab countries to assess SCA among adults with T1DM, thereby addressing an important gap in the literature and offering culturally relevant insights into diabetes self-management. The study also employed a new instrument for measuring SCA, which highlights the importance of this concept in managing chronic illnesses and contributes a useful tool for both researchers and healthcare providers. By characterizing the self-care capacities of this population, the study lays a foundation for more effective and targeted support strategies.
Nonetheless, the findings should be interpreted in light of certain limitations. The sample consisted exclusively of young adults aged 18–30 years with T1DM, which may limit the generalizability of results to other age groups or patients with T2DM. The relatively small sample size could also affect the internal validity and robustness of statistical inferences. Additionally, the study did not include objective clinical indicators such as glycated hemoglobin (HbA1c), which limited our ability to examine how SCA relates to actual glycemic control—an acknowledged limitation. Future research is encouraged to include larger, more diverse samples, incorporate objective clinical variables, and utilize the SCA tool in broader patient populations. Longitudinal studies could explore how SCA influences self-care behaviors and glycemic control over time. Qualitative approaches may also help uncover patients’ lived experiences related to SCA and the factors that influence it. Furthermore, comparative research could examine differences in SCA between single and married patients, or those with and without comorbidities, while experimental designs could assess the effectiveness of interventions aimed at enhancing SCA in individuals with diabetes and other chronic illnesses.
Conclusion
Considering the importance of self-care in diabetes management, this study assessed the level and determinants of SCA among Jordanians with T1DM. Participants showed relatively high SCA, with higher scores in having/developing power and lower scores in lacking power, indicating optimism toward their self-care. The sample's young age may explain the minimal differences in SCA across demographics. These findings emphasize the need for individualized care plans that consider patients’ demographic and psychosocial profiles to enhance self-care management. SCA scores were also correlated with diabetes self-efficacy and self-management, supporting the relevance of SCA assessment in this population. Nurses caring for patients with DM should be trained on factors influencing self-care, and the ASAS-R is recommended as a useful screening tool to assess self-care abilities in patients with T1DM.
Footnotes
Acknowledgements
The authors acknowledge the Deanship of Academic Research, The University of Jordan for funding this study. Also, they sincerely thank the participants and the directors of nursing within the participating hospitals.
Ethical Approval
The ethical approval from the University of Jordan (10/7/2019- No number) and the Ministry of Health (MOH REC 1800138, 9/10/2019) was obtained. This study was conducted in accordance with the principles outlined in the Declaration of Helsinki.
Author Contributions
Study conceptualization and design: AM, BN. Data collection: EO. Formal analysis and interpretation: MD, EO. Writing—original draft: AM, BN, MD. Review & editing: All authors.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability
The data that support the findings of this study are available from the corresponding author upon reasonable request.