Introduction

Rheumatoid arthritis (RA) is a common chronic autoimmune disease characterized by persistent synovial inflammation1. While the exact etiology of RA remains unknown, genetic and environmental factors are believed to play a role in its development2. The global prevalence of RA varies, estimated at approximately 0.5–1%3,4, with similar figures reported in Iran, ranging from 0.33 to 1%5,6. Given the anticipated growth in the elderly population, the prevalence of RA is expected to increase in the coming years7. RA typically manifests between the ages of 30 and 50 and is two to three times more common in women than men8. The disease is characterized by painful inflammation of symmetric joints9. Patients with RA experience a wide array of symptoms, including inflammation, pain, stiffness, structural damage, joint deformities, diminished functional capacity, limited mobility, fatigue, and disability10. RA can also affect other organ systems, such as the respiratory, skin, renal, hematological, gastrointestinal, cardiovascular, and ocular systems11. Furthermore, patients often face psychosocial challenges such as social isolation and depression12. As a progressive disease, RA symptoms tend to worsen over time, involving additional joints and organs, significantly impacting patients’ quality of life, interpersonal relationships, social roles, and professional responsibilities13,14. More than half of patients experience significant functional decline within five to ten years following diagnosis, resulting in an inability to perform numerous daily activities independently15. In addition to the adverse effects on quality of life, RA imposes considerable financial burdens on patients, their families, and healthcare systems16.

Timely management and treatment of RA can alleviate symptoms, slow disease progression, prevent disability, and reduce healthcare costs17. Despite significant advances in healthcare, a definitive cure for RA has yet to be discovered, necessitating long-term or lifelong care and treatment18. Although the ultimate goal in the management of RA is often to achieve remission and prevent disease progression, treatment also emphasizes facilitating patient adaptation, promoting active participation in therapeutic plans, and minimizing disease-related complications—such as inflammation, pain, joint destruction, and deformity—to support a balanced and improved quality of life19,20.

Self-care plays a pivotal role in the effective management of chronic diseases, encompassing a broad spectrum of activities, from health promotion and disease prevention to caregiving and rehabilitation21. Self-care can alleviate disease symptoms, improve physical functioning, enhance treatment outcomes, and ultimately elevate the patient’s quality of life22. Self-care involves empowering patients to take responsibility for their care through strategies such as medication management, physical activity, dietary control, monitoring self-care, and seeking medical assistance when symptoms worsen20. For patients with RA, self-care promotes confidence, independence, self-efficacy, improved health status, reduced disability, enhanced interaction with healthcare systems, fewer clinic visits, and lower healthcare costs23.

Previous studies have highlighted the significant impact of self-care education programs on persons with chronic diseases, demonstrating improved treatment adherence, reduced complications, and lower mortality rates17,20. For instance, a study by Westland et al. (2024) in the Netherlands reported notable improvements in the quality of life of persons with RA who regularly engaged in self-care strategies24. Similarly, Shao et al. (2021) in Taiwan found that self-care enhanced physical functioning and self-efficacy among persons with RA25. Research by Hussein Mohammed et al. (2023) in Egypt revealed that self-care effectively reduced pain and disease severity23, while Johansson et al. (2023) in Sweden underscored the necessity of equipping persons with RA with self-care skills to adapt to their condition26. In India, Gurjar et al. (2024) emphasized the critical role of self-care education in halting disease progression and maintaining the quality of life among persons with RA27. Collectively, these findings indicate that self-care not only enhances the physical and mental health of persons with RA but also contributes to lowering healthcare costs28.

Given the rising prevalence of RA in recent decades, its extensive impact on quality of life, and the critical importance of self-care in managing this condition, increased attention to this aspect is warranted. To gain a deeper understanding of the experiences, needs, and challenges associated with self-care among persons with RA, a qualitative study was conducted to explore their perspectives.

This study aimed to address the following research questions:

  1. 1.

    What are the self-care experiences of persons with RA?

  2. 2.

    What barriers to self-care do persons with RA perceive?

  3. 3.

    What are the self-care needs identified by persons with RA?

Materials and methods

Study design

This qualitative study employed a conventional content analysis approach, specifically the method proposed by Graneheim and Lundman (2004), an inductive method suitable for deriving categories directly from the data29. This approach involves identifying meaning units, condensing them, developing codes, and organizing them into categories and themes that capture the underlying meaning of participants’ experiences30. In this approach, knowledge is constructed through researchers’ engagement with participants, and individuals’ experiences are examined as comprehensible themes representing the phenomenon under study29,30. The Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used to ensure detailed and transparent reporting of the data31.

Study setting and recruitment

This study was conducted from September to December 2024 in Sanandaj, the capital of Kurdistan Province in western Iran. Participants included patients diagnosed with RA who met the following inclusion criteria: age over 18 years, a definitive diagnosis of RA by a rheumatology specialist based on the classification criteria of the 2010 American College of Rheumatology/European League Against Rheumatism (ACR/EULAR)32, a minimum disease duration of six months, the ability to communicate effectively, and informed consent to participate. Participants were recruited purposefully, ensuring maximum variation in gender, education, age, and disease severity. Sampling continued until data saturation was achieved33.

Data collection

The first author, a female doctoral candidate in nursing with a background in qualitative research and clinical experience in rheumatology, was responsible for collecting the data in this study. The researcher’s clinical background in rheumatology allowed for a deeper understanding of the lived experiences of patients with RA and their associated self-care challenges. This prior understanding enabled the researcher to listen to participants’ experiences with greater sensitivity and pose more comprehensive questions during interviews, which enriched the data. Furthermore, this initial familiarity with the key issues faced by patients with RA played a significant role in the more precise selection of key informants for interviews.

However, to mitigate the potential influence of biases stemming from the clinical background and to enhance the trustworthiness of data interpretations, the process of bracketing was continuously employed throughout the study. This process involved the researcher’s ongoing self-awareness of her presuppositions, clinical knowledge, and personal experiences. Prior to each interview, the researcher dedicated time to reflect upon and review any personal expectations or judgments. During data collection, field notes and reflexive memos were regularly utilized to record the researcher’s thoughts, feelings, and reactions to participants’ narratives. These notes helped identify and set aside any preconceived notions, ensuring that data interpretation was grounded specifically and independently in the participants’ perspectives, rather than in the researcher’s prior experiences or knowledge. It is also important to note that the researcher had no direct therapeutic or caregiving role with the participants in this study, which ensured professional distance and further supported the bracketing process.

Comprehensive information about the purpose of the study, potential risks and benefits, and the voluntary nature of participation—including the right to withdraw at any time without consequence—was provided to participants. This information was clearly explained during in-person meetings held in clinics and private practice settings. Participants were given sufficient time to ask questions and clarify concerns before agreeing to participate. Written informed consent was obtained from all participants before the interviews. Subsequently, the time and location of each interview were arranged in coordination with the participants. Each interview was conducted individually in a face-to-face setting. Based on participant preference, the interviews were carried out in their homes and in the Kurdish language.

Semi-structured interviews were conducted using an interview guide that included the following questions: “Can you describe your experiences with self-care?”, “What are your needs regarding self-care?”, “What barriers do you face in self-care?”, and “What concerns do you have about self-care?” To clarify and deepen participants’ responses, probing questions such as “Please elaborate,” “Can you talk about it in more detail?” and “How?” were used. Field notes were also taken to record non-verbal cues, the interview context, and the researcher’s initial impressions. Each interview was conducted in a single session lasting between 45 and 90 min. No repeat interviews were carried out. In total, 15 interviews were conducted, continuing until theoretical saturation was reached. Saturation was defined as the point at which no new codes emerged from subsequent interviews33. Data saturation was achieved after the twelfth interview, with three additional interviews conducted to confirm the finding. All interviews were audio-recorded with participants’ informed consent using a digital recorder.

Data analysis

Data analysis was conducted using the conventional content analysis approach outlined by Graneheim and Lundman (2004)29. Immediately after each interview, participant statements were transcribed verbatim and imported into MAXQDA 2020 (VERBI Software, Berlin, Germany; https://www.maxqda.com) for coding and analysis. To gain a deep understanding and immerse herself in the data, the researcher listened to the audio recordings multiple times and repeatedly reviewed the transcripts.

Subsequently, meaning units—words, phrases, or sentences that conveyed a specific idea relevant to the research questions—were identified and extracted. These meaning units were then condensed to enhance clarity and focus while preserving their core meaning. Descriptive coding was applied as the central step of the analysis process. In this phase, initial codes were assigned to each condensed meaning unit, reflecting the manifest content of the text.

Throughout this inductive process, the codes were constantly compared for conceptual similarities and differences. Similar codes were grouped into sub-categories based on shared conceptual features. sub-categories with related meanings were then merged into broader main categories representing the key emergent themes from the data.

This analytic process was iterative and interactive, involving continuous movement between raw data, codes, sub-categories, and categories to ensure the development of a coherent and data-driven thematic structure.

Ethical considerations

This study was approved by the Ethics Committee of Kermanshah University of Medical Sciences (ID: IR.KUMS.REC.1403.603). Before the study commenced, its objectives were thoroughly explained to all participants, who provided written informed consent. Confidentiality was emphasized, with pseudonyms used to protect participant identities. Collected data were securely stored on an encrypted server. Participants were assured of their right to withdraw from the study at any stage without any repercussions.

Results

This study aimed to explore the experiences of patients with rheumatoid arthritis (RA) regarding self-care. The sample comprised 15 patients (7 men and 8 women), with a mean age of 47.2 years (± 2.64) and an average disease duration of 9.53 years (± 1.46). The mean age at disease onset was reported as 37.6 years (± 1.52). Regarding socioeconomic status, the majority of participants were married (80%, N = 12) and reported a moderate income level (73%, N = 11). Additionally, 40% of participants (N = 6) had completed a bachelor’s degree (Table 1).

Table 1 Demographic characteristics of Participants.
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Through qualitative content analysis of the interviews, 489 initial codes were identified. After eliminating duplicates and merging similar concepts, the codes were reduced to 211. These were categorized into five main categories and 26 sub-categories. The primary categories included: active self-management, challenges and deterrents to self-care, empowering resources for self-care, self-care needs and demands, and emotional paradoxes in self-care (Table 2; Fig. 1).

Table 2 Categories and subcategories of Self-Care experiences in patients with rheumatoid Arthritis.
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Fig. 1
figure 1

A Conceptual Map of Self-Care Experiences and Influencing Factors in Individuals with Chronic Illness.

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Active Self-Management

Over time, persons with RA developed diverse strategies for managing their symptoms and preventing disease progression. Despite limitations in knowledge and uncertainties about appropriate care, these efforts reflected a strong motivation to improve quality of life and adapt to their condition. The core theme of “active self-management” was divided into five sub-categories: treatment adherence, symptom mitigation and regulation, embracing a health-conscious lifestyle, maintaining mental health, and dynamic coexistence with the disease.

Adherence to treatment

Participants emphasized that adherence to prescribed treatment regimens was not merely a mechanical task but a deeply internalized commitment to their health and well-being. They consistently viewed regular medication intake, routine testing, and periodic medical consultations as essential strategies to manage symptoms, prevent disease progression, and maintain their quality of life.

“To live a relatively normal life and experience less pain and stiffness, I try to follow my doctor’s advice and take my medications regularly.” (Participant 5).

Beyond practical adherence, participants described how personal experiences—especially the contrast between periods of active disease and the improvement seen after initiating regular treatment—strengthened their motivation to continue their regimens.

“I don’t want my disease to progress further. That’s why I visit my doctor every six months and undergo testing to monitor my condition.” (Participant 1).

Symptom mitigation and regulation

Participants employed practical strategies to manage RA symptoms such as stiffness, pain, and fatigue, helping them maintain independence and better adapt to their condition. Symptom management was perceived not merely as a set of daily habits but as a critical effort to preserve autonomy and prevent future disability.

“Because my energy is limited, I plan. I do energy-intensive tasks like exercise or cleaning around midday when my body isn’t stiff.” (Participant 14).

“To prevent morning stiffness, I keep myself warm at night and use menthol ointments like Vicks. I start my day with a hot shower and coffee.” (Participant 10).

Beyond immediate symptom control, several participants perceived RA as a complex systemic disease with multifaceted clinical manifestations and broader systemic complications. This awareness motivated them to adopt proactive strategies not only for symptom relief but also for the prevention of long-term physical decline and comorbidities.

“Knowing that this disease can lead to other problems like heart disease, I try to adjust my diet — cutting back on salt and fat — to manage the risk factors.” (Participant 2).

Embracing a Health-Conscious lifestyle

For several participants, the diagnosis of RA acted as a catalyst for significant lifestyle changes and a shift toward health-promoting behaviors. RA was perceived as an internal warning system, prompting a critical reassessment and modification of previous unhealthy habits. Participants described adopting strategies such as healthier dietary patterns, intentional weight loss, increased regular physical activity, and smoking cessation as proactive measures to manage disease progression and alleviate symptoms.

“When my doctor said I needed to lose weight, I started dieting and exercising. I lost 15 kilograms, and now my knees feel much better.” (Participant 4).

“Hydrotherapy and a healthy diet have reduced my joint inflammation and pain.” (Participant 7).

Maintaining mental health

Participants increasingly recognized the central role of psychological well-being in modulating their experience of pain and functional limitations caused by RA. In response, they actively sought strategies to promote and preserve their mental health. Specifically, participants reported using specialized psychological counseling services, evidence-based stress management techniques, and strengthening supportive social relationships as active coping mechanisms to enhance quality of life and facilitate self-care.

“When I’m stressed, my joint pain and stiffness worsen. So, I avoid bad news and participate in joyful gatherings.” (Participant 3).

“After struggling with severe depression, I regained hope through psychiatric help and therapy sessions.” (Participant 6).

Thus, maintaining mental health emerged not merely as an adjunct to physical care but as a critical component of participants’ self-management strategies, enabling them to navigate the challenges of living with a chronic illness more resiliently.

Dynamic coexistence with the disease

Some participants adopted a realistic acceptance of the limitations imposed by RA and embraced a proactive, adaptive approach to maintain their quality of life. They reported shifting their perspectives toward the disease, acknowledging its inevitable constraints while refusing to surrender to its consequences. Strategies such as employing assistive devices and modifying daily routines were described as practical means of fostering an active coexistence with their condition.

“This disease changed my life, but I didn’t give up. I replaced my bike with an electric model so I can still enjoy my favorite activity.” (Participant 15).

“To make household chores easier, I reorganized my kitchen and purchased electric appliances like a food processor and dishwasher.” (Participant 14).

Challenges and deterrents to Self-Care

Patients with RA encounter significant impediments to effective self-care. While the enduring and erosive burden of chronic disease often leads to profound fatigue, severely limiting self-care capacity, this section further elaborates on a confluence of external and internal factors that actively deter and obstruct self-management. These challenges encompass information ambiguity, misconceptions, inefficiencies within the healthcare system, financial constraints, the demands of multiple roles, and various cultural and social obstacles. Collectively, these interwoven elements negatively impact patients’ ability to make informed decisions, sustain motivation, and consistently implement effective self-care strategies.

Information ambiguity and misconceptions

One of the primary challenges faced by persons with RA is ambiguity regarding disease- and treatment-related information. This includes insufficient awareness about appropriate treatment regimens, medication side effects, disease prognosis, and effective self-care methods. Such informational gaps often generate confusion, mistrust, and a diminished sense of agency among patients.

“I don’t know the purpose or side effects of the medications I take; I just take them.” (Participant 5).

People with RA often hold inaccurate beliefs about their disease, treatment methods, and the importance of self-care. These misconceptions result in behaviors such as non-adherence to treatment, reliance on unscientific methods, and delays in seeking medical care.

“To reduce the harm of smoking, I switched to using a water pipe because I think it’s better for my rheumatoid condition.” (Participant 13).

Many participants reported experiencing cognitive confusion when navigating between traditional and modern therapeutic approaches. There was a latent belief that traditional remedies were inherently safer and free of side effects, whereas modern medical interventions were perceived as risky and laden with adverse effects.

“I halved my medication dosage and replaced it with herbal teas. I think this is a better approach.” (Participant 7).

Conversely, some participants downplayed medication side effects, expressing a belief that higher doses would expedite recovery. This led to instances of self-adjusted dosing without medical consultation.

“I doubled my medication for faster results; I thought it would speed up my recovery.” (Participant 12).

Healthcare system inefficiencies

An ineffective healthcare system is another barrier to self-care. Issues such as a lack of rheumatology specialists, long waiting times, and physicians’ lack of personalized approaches were identified as significant concerns:

“In our province, there are very few specialists. We have to wait months, and in the end, the doctor only spends 10 minutes with us.” (Participant 12).

“Doctors provide generic recommendations that don’t align with my living conditions. This discourages me.” (Participant 4).

Participants reported that authoritarian and directive communication styles during clinical interactions, coupled with a lack of empathic and understanding-based therapeutic relationships, significantly undermined their motivation to actively engage in the treatment process and disease management. These communication barriers fostered a passive approach to self-care.

“The commanding tone, the lack of attention to my needs, and the rushed behavior of my doctor have made me reluctant to ask questions about my disease. Our relationship has been reduced to simply requesting prescriptions.” (Participant 2).

Financial constraints

The high cost of treatment and inadequate insurance coverage place significant financial pressure on patients, limiting their ability to pursue optimal care:

“I know I need to take better care of myself, but I don’t have the financial resources to do so.” (Participant 3).

Participants emphasized that, beyond direct treatment expenses, financial limitations acted as a multifaceted barrier impacting various aspects of maintaining a healthy lifestyle. Many reported that even when treatment costs were partially covered by insurance, securing resources for recommended nutritional supplements, maintaining a nutritious diet, and enrolling in regular exercise programs remained substantial challenges.

“Despite prioritizing medication costs, I cannot afford the vitamin supplements prescribed by my doctor.” (Participant 7).

Participants identified the negative impact of RA on employment and income as a key structural barrier to self-care. Financial insecurity limited access to healthcare, increased psychosocial stress, and reduced social status, collectively diminishing both motivation and capacity for health management.

“I am the breadwinner of my family, and I cannot afford to spend our living expenses on my treatment and care.” (Participant 8).

Multiple roles

Managing responsibilities related to work, family, and illness simultaneously imposes a heavy burden on patients, reducing their capacity for self-care:

“All my time and energy go into caring for my elderly parents. There’s nothing left for myself.” (Participant 1).

Some participants reported that, in the face of persistent disabilities preventing them from fulfilling their previous social roles, they encountered a crisis threatening their social identity. This experience acted as a psychological stressor, leading to the development of a complex defensive mechanism. In particular, patients engaged in consciously suppressing their illness and its symptoms to maintain a socially acceptable image, avoiding the stigma and rejection associated with their disability.

“I’m worried that my husband and children will get tired of me. That’s why, if I have any energy left, I prioritize taking care of them and fulfilling my duties towards them, even if it means neglecting my own self-care needs.” (Participant 14).

Cultural and social challenges

In some communities, self-care is incorrectly perceived as selfishness or excessive self-attention. Such attitudes discourage patients from prioritizing their health needs:

“I hide the fact that I go to the gym because people question why a man my age cares so much about himself.” (Participant 13).

Participants identified societal stigma and negative judgments toward the use of assistive devices as a major barrier. Perceptions such as being “too young” for such aids contributed to feelings of rejection and social exclusion, often discouraging their use despite clear health benefits.

“I wore a wrist brace for a while, and my coworkers were saying behind my back that I’m pretending to be sick to work less.” (Participant 4).

Another key challenge identified by participants was the impact of cultural and religious beliefs—particularly fatalism—on health behaviors. Many perceived health outcomes as determined by divine will, leading to diminished trust in medical interventions and self-care efforts.

“If God wills, I will get better, and if He doesn’t, no matter how hard I try, even if I go to the best doctor, I won’t get better.” (Participant 12).

Older participants frequently highlighted a significant cultural and social challenge stemming from traditional community structures. Within these frameworks, care responsibility for elderly parents typically falls to their children, rather than the elderly individuals themselves. This ingrained societal expectation often diminishes the sense of agency that older adults perceive in their own health management and self-care practices.

“I spent all these years raising my children so that when I get sick, they can take care of me, not so that I would have to take care of myself.” (Participant 5).

Lack of social support

Persons with RA often suffer from inadequate social support, which fosters feelings of loneliness and hopelessness, further hindering their ability to manage self-care:

“When I say I’m unwell, no one believes me. They think I’m just being lazy.” (Participant 3).

“My family was supportive at first, but now they’re tired and pay less attention to me.” (Participant 5).

The lack of emotional and practical support from family and social networks significantly undermines patients’ motivation and ability to engage in effective self-care. Several participants noted that, over time, the support they initially received from loved ones diminished, leading to a sense of isolation. This lack of validation not only amplifies feelings of hopelessness but also contributes to physical and emotional exhaustion, exacerbating the impact of RA on their overall well-being.

Negative Self-Concept

Participants frequently cited a lack of confidence in their own abilities and a profound fear of making mistakes or causing further harm to themselves as critical barriers to assuming responsibility for self-care. This pervasive anxiety led some to adopt a passive reliance on others for their care, creating a false sense of security. By delegating responsibility in this way, they were temporarily freed from concerns about potential errors or forgetfulness. However, this approach inadvertently fostered a cycle of dependency, gradually undermining their self-efficacy and reinforcing a diminished self-concept.

“I’m afraid to inject methotrexate myself. It’s not just the needle—I’m scared I’ll mess it up or that it won’t work properly. I don’t really feel capable of handling it on my own. When someone else does it for me, I feel safer and less stressed. It’s like a big weight is lifted off my shoulders.” (Participant 5).

Enduring and erosive burden of chronic disease

The chronic, progressive, and unpredictable nature of RA profoundly impacts patients, leading to a cyclical burden of physical and psychological challenges. The unpredictable recurrence of flare-ups, even amidst periods of improvement, erodes patients’ confidence in their ability to manage the disease. This persistent unpredictability and the gradual reduction in quality of life contribute to an ongoing cycle of emotional and physical exhaustion, significantly limiting effective disease management

“Every day, as the sun rises, my illness wakes up with me. I spend the whole day dealing with pain, stiffness, and fatigue. Even simple daily tasks have become challenging.” (Participant 6).

Prolonged and often unavailing treatments frequently lead many chronic disease patients into a state of despair. These patients perceive their efforts to manage their illness as ineffective and futile, finding themselves trapped in an endless and inescapable cycle. This persistent burden of illness not only exhausts the physical well-being of the individual but also profoundly impacts their mental and emotional states:

“I’m tired of all these medications; the list keeps growing, but my condition doesn’t improve. It feels like I’m stuck in a never-ending cycle.” (Participant 8).

Several participants reported that the prolonged experience of side effects from continuous medication use represents a significant challenge. The lifelong use of prescribed drugs for managing the primary disease has led to the emergence of secondary health problems. This not only increases the burden of illness but also influences their attitude towards adherence to treatment as part of their self-care efforts.

“Years of medication have left me with stomach problems. Corticosteroids have caused weight gain, and now my kidneys are affected. These treatments are exhausting and overwhelming.” (Participant 12).

Ultimately, the inability to cope effectively with RA gradually diminishes patients’ self-care motivation. Feelings of defeat and despair significantly undermine their treatment adherence and capacity for positive decision-making. This can lead to a passive acceptance of disease complications as an inevitable destiny, hindering active self-care behaviors. As Participant 8 resignedly stated:

“I’ve accepted that I’m not going to go back to a normal life, and I’ll end up paralyzed. No matter how much I care for myself, it will always end the same.” (Participant 8).

Empowering resources for Self-Care

Self-care is a fundamental component of RA management and plays a vital role in enhancing patients’ quality of life. Key facilitators of effective self-care include intrinsic motivation and Purposefulness, empowering support, conscious Insight into Self-Care, and responsibility for self-reclamation. Collectively, these factors not only strengthen patients’ capacity to manage the condition but also contribute to reducing disease-related complications.

Intrinsic motivation and purposefulness

Intrinsic motivation acts as a powerful driving force in disease management and facilitates self-care. Patients who make a personal commitment to self-care often experience greater success in controlling their condition and achieving treatment goals. Commitment to personal improvement is essential for obtaining favorable outcomes:

“Nothing improved until I decided to help myself. But once I started taking care of myself, it felt like a miracle.” (Participant 10).

Participants highlighted the critical role of intrinsic motivation, hope, and a positive attitude in managing RA. These psychological factors act as internal coping resources and significantly influence self-care behaviors. A key motivator was the desire for a meaningful life, empowering them to take health responsibility not only for personal well-being but also to fulfill perceived ethical obligations to family. This aspiration to maintain meaningful social roles and contribute to others powerfully drove self-care, as these actions were seen as essential for achieving personal and professional goals.

“I’m still young; I want to grow and achieve a lot. I work with computers and I need my fingers to do my job and be productive. That’s why I really take care of my hands.” (Participant 3).

Empowering support

A robust support system comprising family, friends, and the workplace serves as a motivational and facilitating factor in the self-care journey. Social support not only alleviates psychological and physical stress but also enhances patients’ sense of self-worth, encouraging them to persist in their treatment plans:

“When you feel important to your family, and they support you, you gain more motivation to take care of yourself.” (Participant 14).

“My family’s support has kept me going whenever I feel tired or hopeless. Without their help, I could never have been this strong.” (Participant 7).

Conscious insight into Self-Care

A deep understanding of the disease’s nature and the role of self-care in reducing RA-related complications is pivotal in strengthening patients’ motivation. Those who observe positive outcomes from their efforts in disease management are more determined to continue:

“Seeing the results of your efforts multiplies your motivation. For example, when I lost weight, I noticed less pain in my knees. That experience encouraged me to keep going.” (Participant 4).

“Rheumatoid arthritis is an expensive disease. If I don’t take care of myself, the cost of treatments and surgeries will place a heavy financial burden on my family. That’s why I see self-care as a responsibility.” (Participant 9).

The findings also reveal a profound fear and anxiety regarding the future impact of the disease on various aspects of participants’ lives. These fears often center on losing personal independence and increasing reliance on others. In this context, self-care behaviors are viewed as strategies for managing disease symptoms and as essential mechanisms for maintaining independence and agency in daily life.

“I take care of myself so that I don’t become bedridden and can live a dignified, independent life.” (Participant 15).

Responsibility for Self-Reclamation

For many participants, self-care was viewed as an active, voluntary commitment to preserving their identity, which they felt was threatened or altered by RA. It was seen as a conscious responsibility aimed at maintaining their pre-illness sense of self and resisting being defined solely by the illness. This responsibility reflected participants’ desire to counteract the erosion of selfhood caused by the physical and psychological impacts of the disease, emphasizing the existential importance of self-care in preserving personal dignity and agency.

“For me, taking care of myself is no longer just a simple choice; I feel like it’s my last line of defense—the last thing I can do to preserve my abilities and health as much as possible. Maybe this way, I can still be that active person I used to be, both in my own life and in society. I think it’s the only way I can feel that I still have control over my life.” (Participant 1).

Participants regarded self-care as a personal responsibility, understanding that managing illness and maintaining quality of life often involved engaging in challenging or restrictive behaviors. Despite the burdens, their commitment to health protection drove them to endure these difficulties, willingly accepting hardships, even when intimidating, to preserve their identity, health, independence, and long-term well-being.

“I’ve come to realize that self-care isn’t just a choice—it’s a duty that I absolutely have to fulfill. It’s really hard and incredibly exhausting. It feels like carrying a very heavy load all the time, but if I don’t do it, I’ll end up carrying an even heavier, unbearable burden in the future.” (Participant 10).

Self-Care needs and demands

Patients with RA express a range of needs crucial for enhanced condition management and improved quality of life. These encompass the acquisition of Empowering Knowledge and Skills, the cultivation of Internal Resilience Skills, access to Accessible and Responsive Healthcare, the integration of New Technologies, and the effective utilization of Rehabilitation Services.

Empowering knowledge and skills

Participants emphasized the importance of acquiring comprehensive and practical information, alongside the development of operational skills that enable them to effectively manage their health, particularly within the context of RA and its complications. These necessary competencies encompass not only a clear understanding of the disease’s complications, progression, and available treatment options, but also the practical abilities required for self-monitoring, symptom management, adherence to treatment regimens, and active, informed participation in decision-making regarding their care.

“I want to learn how to reduce my pain without relying on medication and prevent inflammation and joint deformities.” (Participant 1).

Participants reported a need for more precise guidance on lifestyle modifications—particularly diet, physical activity, and weight management—to support symptom control and overall health, noting uncertainty about how to implement effective changes.

“I need to know which foods are beneficial, which exercises suit me, and how much daily activity is appropriate.” (Participant 7).

Another significant challenge encountered by participants in the present study was identifying and accessing appropriate and reliable resources for managing their RA. They emphasized the importance of information, services, and support that were not only scientifically valid but also aligned with their unique disease characteristics, functional status, psychosocial needs, and personal preferences.

“It would be great to have a credible source providing accurate and scientific information.” (Participant 1).

“All the information available online is aimed at older adults or those with very advanced disease symptoms, and it doesn’t address my specific situation.” (Participant 3).

Internal resilience skills

The acquisition and development of “Internal Resilience Skills” emerged as another vital need for participants in adapting to the emotional, psychological, and physical challenges and adversities associated with RA. Patients consistently emphasized the importance of learning how to regulate emotions, manage stress effectively, cultivate resilience, develop problem-solving abilities, engage in positive reframing, and foster self-compassion. These skills are considered crucial for enhancing individual resilience in the face of chronic illness.

“I want to learn how to manage my anger and stress and become more resilient.” (Participant 10).

For some individuals, the experience of RA is profoundly disruptive to their emotional and psychological well-being. The combined burden of chronic pain, functional limitations, and fatigue is often exacerbated by social challenges, role loss, and future uncertainties, intensifying emotional distress and feelings of isolation. Consequently, developing psychological resilience and mental health skills is crucial. These skills are essential not only for managing the emotional toll of RA but also for improving disease self-management. Cultivating emotional regulation, a positive mindset, and enhanced mental well-being are vital components of long-term RA management.

“Rheumatoid arthritis and the fear of its complications have caused me to feel a constant sense of loss and sadness, distancing me from my true self. Now, more than anything, I need to learn how to become stronger and reclaim my mental health.” (Participant 1).

Accessible and responsive healthcare

Patients emphasize the necessity of access to specialized physicians, comprehensive treatment services, and adequate insurance coverage to manage their disease effectively.

“I need a doctor who considers all my conditions and offers a holistic treatment plan.” (Participant 6).

“I need insurance that covers the costs of medications, consultations, and tests.” (Participant 9).

Efficient healthcare system access is paramount for individuals with RA. The disease’s complexity necessitates a multidisciplinary approach, involving specialists such as rheumatologists, physical therapists, and mental health professionals. A holistic treatment strategy, addressing both the physical and psychological dimensions of RA, is crucial for effective management. Furthermore, adequate insurance coverage is vital to ensure patients can access essential medications, diagnostic procedures, and consultations without incurring significant financial hardship.

Rehabilitation services and support

Rehabilitation services, including physiotherapy, occupational therapy, and training on using assistive devices, are essential for helping persons with RA regain independence and enhance their quality of life.

“I want to learn how to use assistive devices and perform tasks independently without relying on others.” (Participant 13).

Participants have emphasized the importance of comprehensive rehabilitation services, especially given the predominantly treatment-focused approach of the healthcare system in Iran. They see rehabilitation as a critical component for regaining previous levels of function and improving their independence. One participant shared their concern about the prioritization of services in the healthcare system:

“The government doesn’t allocate funds for rehabilitation services; all the expenses are directed toward treatment. However, rehabilitation and occupational therapy can help us return to a normal life.” (Participant 15).

Integrating new technologies

Participants acknowledge the pivotal role of technological advancements in enhancing their quality of life. They express a strong need for wearable monitoring devices, innovative medical equipment, AI-based assistants, and self-management apps to help them manage their diseases more effectively.

“If there were an app connected to AI and directly supervised by the Ministry of Health that allowed us to adjust our treatment plans, it would be ideal.” (Participant 3).

“In this age of rapid technological advancements, using modern tools suited to our disease conditions plays a significant role in optimal management, and it can reduce our dependency on frequent visits to the doctor.” (Participant 15).

Technological innovations hold significant promise for improving the daily management of RA. Wearable devices help track symptoms and medications, while AI tools support personalized treatment planning and management. These advancements enhance disease monitoring, streamline medication management, and facilitate appointment scheduling, making them valuable resources for reducing reliance on frequent in-person care.

Emotional paradoxes in Self-Care

For individuals managing chronic illness, self-care is a complex and often contradictory phenomenon, not simply a positive behavior. Patients frequently experience tension between their healthy identity and their illness identity. While self-care aims for recovery, it simultaneously reinforces illness-related limitations. Participants described a paradox where the pursuit of independence conflicted with a concurrent need for support, sometimes leading to the fear of losing support outweighing the desire for self-sufficiency. Moreover, distressing illness experiences like symptom flare-ups were reported to have dual impacts: either reinforcing adherence to self-care or leading to despair and disengagement.

Conflict between healthy and illness identity

Participants highlighted a fundamental paradox of self-care: while it was seen as the sole route to achieving a “normal” life and preserving their pre-illness identity, the very acts of self-care consistently reinforced their illness and altered reality. These practices, intended to foster well-being, paradoxically signified a departure from normalcy and cemented their identity as “patients.” Each self-care action served as a reminder of their changed health status and the fundamental shifts in their lives. Consequently, although self-care could be empowering, it also demanded significant emotional and physical investment.

“They tell me to quit smoking, lose weight, and avoid the foods I enjoy so I can live a ‘normal life.’ But honestly, none of that feels normal to me. These things were part of what made life feel normal before. Now I’m giving them up for a version of normal that feels completely unfamiliar and exhausting. (Participant 13)

Conflict between dependency and Self-Sufficiency

The chronic, progressive, and unpredictable nature of RA profoundly impacts patients, leading to a cyclical burden of physical and psychological challenges. The unpredictable recurrence of flare-ups, even amidst periods of improvement, erodes patients’ confidence in their ability to manage the disease. This persistent unpredictability and the gradual reduction in quality of life contribute to an ongoing cycle of emotional and physical exhaustion, significantly limiting effective disease management.

“I’m tired of my children always telling me what to do. I want to prove I’m still capable and keep my role as a mother. But deep down, I’m scared—what if becoming independent means, they stop caring or checking in? What if I end up alone, having to do everything by myself with no one around? (Participant 5)

The findings highlight a meaningful paradox within patients’ experiences of social support. While balanced and individualized support can effectively facilitate self-care, overly protective or controlling support may paradoxically undermine autonomy and reinforce dependency. Such dynamics can hinder patients’ active engagement in managing their condition.

“My children won’t let me do anything, and this makes me increasingly dependent on them. I need them to help me take care of myself and maintain my independence.” (Participant 7).

Contradictory responses to disease trajectory

Participants revealed the paradoxical influence of their illness experiences on their engagement with self-care. For some, worsening symptoms—such as increased pain, joint stiffness, and mobility limitations—served as warning signs. These distressing episodes acted as motivators, pushing them to re-engage with self-care more seriously. For these individuals, disease exacerbation functioned as a powerful catalyst for reflection and renewed commitment to managing the illness—demonstrating their capacity to transform adversity into motivation.

“When the pain peaks and my joints are stiffer than ever, I feel guilty and blame myself for not taking better care. It’s like a wake-up call that pushes me to be more careful and take my illness seriously.” (Participant 11).

Conversely, for others, such flare-ups reinforced a deep sense of failure and despair. They interpreted these episodes as evidence that their self-care efforts had been ineffective, leading to feelings of helplessness and a decline in motivation. For this group, worsening symptoms undermined their belief in the value of self-care and pushed them toward disengagement.

“When I see that despite all my efforts, the pain and stiffness keep getting worse and my illness suddenly flares up again, I truly feel like everything I’ve done has been for nothing. It really destroys my motivation to keep trying to take care of myself.” (Participant 12).

Moreover, participants described facing a fundamental contradiction between pain and functionality. To maintain mobility and physical function, they had to endure significant pain. However, the natural response to pain is rest, which in turn exacerbates stiffness and loss of function. This vicious cycle made decision-making around self-care particularly difficult and further highlighted the dual-edged nature of disease experiences in motivating or impeding self-care efforts.

“I want to exercise, but the pain makes it impossible to continue. And yet, not exercising makes the pain even worse. It’s a vicious cycle—I feel trapped between needing to move and being unable to because of the pain.” (Participant 4).

Delicate balance of fear and hope

Participants highlighted that effective and sustained self-care hinges on a dynamic equilibrium between hope and fear. Excessive hope, despite its positive appearance, could foster unrealistic optimism, diminishing the seriousness with which self-care practices are approached. This could also lead to disillusionment if desired outcomes aren’t met. Conversely, overwhelming fear could induce helplessness and a sense of defeat, ultimately eroding motivation and negating self-care efforts. Therefore, maintaining a delicate balance between these two emotional states is crucial for long-term engagement in self-care.

“If you’re overly optimistic, you might overlook the seriousness of the disease. But if you’re too hopeless or too scared, you end up doing nothing because the fear paralyzes you. I’ve learned it’s all about balance—that’s the only way I can genuinely take care of myself.” (Participant 15).

Discussion

This study provides a comprehensive and unique perspective on the self-care experiences of patients with RA. The findings indicate that while patients employ diverse strategies to manage their disease, they encounter numerous barriers and challenges in their self-care journey. Addressing these needs and facilitating appropriate support systems can significantly enhance their self-care abilities and improve their quality of life.

The participants in this study utilized a wide range of strategies for Active self-management, including adherence to treatments, Symptom Mitigation and Regulation, embracing a health-conscious lifestyle, maintaining mental health, and dynamic coexistence with the disease. The findings revealed that many patients diligently followed their physicians’ recommendations, such as adhering to prescribed medication regimens, undergoing diagnostic tests, and attending regular check-ups. These results align with previous studies, which suggest that persons with RA often prioritize compliance with medical prescriptions to manage their condition and prevent complications34.

One of the key findings of this research was the concept of dynamic coexistence with the disease, which emerged as a fundamental strategy for disease management. Patients accepted the limitations imposed by RA and sought to adapt to the disease while pursuing normal lives. Similarly, a 2024 study highlighted that persons with RA who accepted the disease and adapted their daily activities successfully balanced rest and activity, maintained active participation in society, and achieved individual goals24.

Maintaining mental health was another critical strategy identified by participants. Psychological factors not only influence the severity of RA symptoms but also affect treatment adherence12,35. A 2024 study demonstrated that persons with RA strive to sustain their mental health by strengthening social relationships, engaging in enjoyable activities, and cultivating a positive outlook36. Incorporating modern technologies, such as digital platforms, interactive educational applications, and supportive online communities, can enhance patients’ motivation for self-management.

This study makes a significant contribution by identifying key challenges and Deterrents to self-care among individuals with RA. These obstacles encompass information ambiguity and misconceptions, healthcare system inefficiencies, financial constraints, the burden of multiple roles, a lack of social support, cultural and social challenges, and negative self-concept. Notably, the absence of clear and accurate information regarding the disease, its treatment, and potential complications emerged as a critical impediment to effective self-care, aligning with prior research on the importance of comprehensive information for enhancing self-care behaviors17,37. Informational ambiguities often lead to uncertainty and distrust among patients regarding treatment strategies and disease management.

Healthcare system inefficiencies also posed significant challenges for persons with RA. These included shortages of specialists, restricted access to specialized services, prolonged waiting times, poor physician-patient communication, and inadequate attention to patient needs. Evidence suggests that inefficient healthcare systems foster distrust among patients, reducing their acceptance of and treatment adherence. Furthermore, insufficient consultation time to address patient concerns adversely impacts the quality of physician-patient interactions, hindering the self-care process38,39,40. These observations underscore the principles of the Chronic Care Model, which emphasizes the necessity for well-coordinated care teams with clearly defined roles, collaborative care planning, and readily accessible services41. Therefore, reforming healthcare systems and enhancing the quality of services and communication can significantly improve self-care practices among individuals with RA.

Financial Constraints were another critical challenge identified in the study. High healthcare costs, insufficient income, and inadequate insurance coverage limited patients’ access to necessary services and hindered their self-care efforts. These findings are consistent with previous studies that identify economic difficulties as major barriers to accessing healthcare services34,42. Addressing these challenges requires revising insurance policies and providing financial support through charitable organizations and government initiatives.

Multiple roles, including life pressures, familial and social obligations, and unexpected life events, significantly impact the ability of patients to manage their condition. Such pressures reduce the time and energy available for treatment adherence and self-care. A 2022 qualitative study in Australia highlighted how the burden of multiple commitments constrains patients’ capacity for effective disease management43. Daily life pressures make it hard for patients to prioritize managing their disease, and they also lower their motivation and ability to keep up with necessary care. Therefore, healthcare teams must fully understand patients’ daily lives to provide them with tailored support.

Another barrier identified in the present study was the profound impact of low self-confidence and a negative self-concept on participants’ ability and willingness to engage in self-care actively. This finding suggests that a lack of belief in one’s personal capabilities and disease management knowledge significantly hinders the effective implementation of self-care behaviors. This aligns with the findings of Chaleshgar Kordasiabi et al. (2018), who similarly emphasized the role of self-concept in shaping self-care practices44. Such alignment underscores the pivotal role of psychological factors in the success of self-care and highlights the need to address these dimensions in the design of future interventions.

Cultural and social challenges also pose significant obstacles to self-care. These findings align with Madeleine Leininger’s Culture Care Theory, which emphasizes the critical importance of cultural considerations in healthcare delivery. Disregarding cultural aspects in the care process can lead to misunderstanding, dissatisfaction, and non-adherence to treatment regimens by the patient45. To address these barriers, public education on the importance of self-care and family education to support individuals with RA are essential. Furthermore, implementing supportive workplace policies and enhancing social work services can play a crucial role in mitigating these obstacles.

Our study reveals that the enduring and erosive burden of chronic disease significantly impedes self-care in RA patients. This aligns with Oldroyd et al. (2020) in the UK reported that chronic fatigue and persistent pain, hallmark symptoms of RA, significantly reduce patients’ functional capacity and their ability to manage the disease46. These findings emphasize the need for targeted attention to the psychological and social dimensions of RA care and the development of comprehensive support programs, including psychological counseling and stress management. The chronic and unpredictable nature of RA exacerbates feelings of helplessness and distress in patients. Toye et al. (2019) in the Netherlands reported that disease fluctuations contribute to a sense of instability and loss of control47. Additionally, the prolonged treatment process and lack of immediate, tangible results can lead to feelings of despair. Improving the quality of life for persons with RA requires addressing these factors through specialized education, enhanced psychosocial support, and fostering realistic treatment expectations.

This study also highlighted key empowering resources for self-care among persons with RA, including conscious insight into self-care, intrinsic motivation and purposefulness, responsibility for self-reclamation, and an empowering support. Patients who are aware of the risks and complications of the disease and experience the benefits of self-care are more likely to maintain these behaviors. These findings align with Westland et al. (2024) in the Netherlands, who demonstrated that awareness of disease risks and the consequences of non-adherence significantly improve patients’ commitment to disease management24. Furthermore, these findings align with Bandura’s self-efficacy theory, which posits that mastery experiences and positive thoughts can facilitate an individual’s self-efficacy for assuming responsibility and engaging in behavior change48. Additionally, the study revealed that broad support from family, friends, and the community plays a vital role in facilitating self-care behaviors. Patients with sufficient emotional and practical support exhibit greater capacity to manage their condition. These findings align well with Albert Bandura’s theory of self-efficacy. Bandura posited that verbal persuasion, positive feedback, and social support can enhance individuals’ self-efficacy48. Comprehensive and sustained support not only enhances patient motivation but also aids in the effective implementation of treatment plans.

Individuals with RA have diverse self-care needs and demands, including Empowering Knowledge and Skills, Internal Resilience Skills, efficient healthcare systems, access to rehabilitation services, information on rehabilitative treatments, and the use of emerging Integrating New Technologies. The findings of this study revealed that patients require Empowering Knowledge and Skills to effectively manage their condition and achieve an optimal level of well-being. These skills significantly contribute to enhancing patients’ practical and cognitive competencies in addressing the specific challenges and needs associated with RA. These findings align with previous research suggesting that patient empowerment enhances autonomy and helps preserve human dignity36,37,38. However, evidence indicates that the provision of information alone is insufficient. Improving self-care behaviors requires complex, multifaceted interventions49. To maximize the effectiveness of self-care programs, comprehensive strategies tailored to patients’ living conditions, individual needs, and capabilities should be adopted.

Specifically, patients with RA have an urgent need for comprehensive education regarding the correct use of medication, potential drug interactions, and anticipated side effects. This necessity arises from the long-term nature of drug consumption and the complexities inherent in RA treatment. Previous studies have similarly emphasized the importance of providing precise education to individuals with RA concerning how to manage their treatment regimen, given its chronic nature22,50. Therefore, empowering patients with sufficient knowledge and skills about available treatment options, and enabling their active participation in decision-making and the design of personalized treatment plans tailored to their individual needs, is of critical importance.

The strengthening and development of internal resilience skills have been identified as another prominent need among individuals with RA. To enhance their quality of life, individuals with RA require education in effective mental health care practices, which encompasses the cultivation of these resilience skills for adapting to the challenges and adversities associated with chronic illness. Landgren et al. (2024) in their study in Sweden emphasized the importance of maintaining a positive outlook and well-being among individuals with RA. A positive mental state enables individuals with RA to engage more actively and demonstrate greater motivation in their self-care36. RA imposes a wide range of physical, psychological, and social challenges on affected individuals; therefore, to effectively cope with these challenges and foster personal growth, it is essential to develop Internal Resilience Skills, manage negative emotions, and cultivate positive affects51. Addressing these psychological dimensions is paramount for enhancing patient quality of life. Therefore, integrating mental health support programs that emphasize the training of Internal Resilience Skills and coping strategies is vital for comprehensive RA care.

A critical need for persons with RA is access to supportive and rehabilitative services. Practical training on using assistive devices such as splints, braces, and mobility aids like canes and walkers is essential52. These findings highlight the importance of comprehensive rehabilitation programs in RA management. Practical training in assistive device use and access to specialized therapy services enhance persons with RA’s quality of life and foster greater independence in daily activities.

One of the key findings of the present study was the emphasis by participants on the potential role of new technologies in facilitating and enhancing self-care for patients with RA. Specifically, the use of wearable gadgets, AI assistants, self-care apps with medication reminders and medical appointment tracking, and monitoring tools were seen by patients as an opportunity to achieve greater independence in disease management. This finding aligns with Donnelly et al. (2020), who emphasize the empowering role of technology in chronic disease self-management20. The findings of this study emphasize the importance of active interdisciplinary collaboration between healthcare professionals and AI/computer science engineers in designing, developing, and assessing innovative, user-friendly technological tools for patients with RA.

The present study clearly revealed the emotional paradoxes associated with self-care in patients with RA. These profound contradictions, which highlight the complexity of these patients’ lived experiences, included: Conflict between Healthy and Illness Identity, Conflict Between Dependency and Self-Sufficiency, Contradictory Responses to Disease Trajectory, and Delicate Balance of Fear and Hope.

A central finding of this study reveals a significant inner conflict between “healthy” and “ill” identities within the self-care experiences of individuals with RA. While participants engaged in self-care to preserve their quality of life and personal identity, aiming for a sense of normalcy, the continuous and repetitive nature of these behaviors paradoxically disrupted that “healthy” identity. Rather than fostering normalization, self-care practices frequently imposed limitations, serving as persistent reminders of their illness. This finding diverges from much of the current literature, which predominantly emphasizes the positive effects of self-care on quality of life, often overlooking its contradictory and potentially adverse psychological implications15,22. The findings reveal the psychological complexities of self-care in chronic illness, showing its potential to both empower and strain identity. This challenges existing self-care models and calls for healthcare strategies that address its psychological effects while fostering a positive sense of identity.

Additionally, our study revealed a complex dimension of self-care among RA patients: while some participants actively pursued self-care to gain greater independence, others, despite their intrinsic desire for autonomy, resisted fully assuming responsibility for their own care. These individuals found themselves caught in a deep internal struggle between the desire for independence and the fear of losing support and facing loneliness. This apparent contradiction reflects a hidden aspect of self-care that has received limited attention in the existing research literature. The systematic review by Parenti et al. (2020) found that previous studies have primarily focused on the positive effects of independence and autonomy in promoting self-management behaviors among individuals with RA53. Our findings align with Dorothea Orem’s Self-Care Deficit model, which emphasizes that patients with chronic conditions often require a Partially Compensatory System. This means their independence should neither be entirely removed nor should they be left to manage on their own completely54. The findings reveal that fear of losing support and anxiety about full independence hinder self-care engagement, emphasizing the need to reconceptualize self-care as a collaborative process that balances autonomy with connectedness.

One of the key findings of this study is the dual impact of symptom exacerbation and disease flare-ups on self-care among patients with RA. For some participants, these unpleasant experiences acted as a “wake-up call,” increasing their motivation and adherence to self-care practices. This finding challenges the one-dimensional perspective presented in the qualitative study by Chaleshgar Kordasiabi et al. (2018), which focused solely on the negative effects of pain and disease recurrence in terms of fostering hopelessness and reducing self-efficacy44. In contrast, the findings of the present study align with Lazarus and Folkman’s Transactional Model of Stress and Coping, which suggests that emotional paradoxes can have a reverse and facilitative effect in specific situations and contexts55. This study underscores the complex and dual nature of RA patients’ lived experiences, highlighting the need for flexible, person-centered self-care interventions that account for individual variability, enhance motivation, and address disease-related discouragement.

Trustworthiness and limitations

To ensure the trustworthiness of this qualitative study, Lincoln and Guba’s (1994) four criteria were applied, with additional attention to reflexivity and authenticity56. Credibility was enhanced through prolonged engagement with participants and the use of member checking and expert validation of codes and categories. Confirmability was strengthened by sharing interview recordings, transcripts, and coding processes with two independent qualitative research experts who confirmed the findings. Dependability was addressed through thorough documentation of each research step, ensuring transparency and reproducibility, supported by the use of MAXQDA software for data organization and analysis. Transferability was assessed by comparing study results with the experiences of three individuals with RA who were not participants in the main study, yielding consistent patterns that support broader applicability.

Despite the rigorous design and consistent execution of this qualitative study, several methodological limitations should be acknowledged. The relatively limited sample size and geographic scope may affect the generalizability of the findings to broader populations with different cultural, social, or healthcare contexts. However, the aim of this study was not statistical generalization but rather to provide an in-depth, contextualized understanding of the self-care experiences of patients living with RA. To enhance the transferability of the findings, a maximum variation sampling approach was employed, involving participants with diverse backgrounds in terms of age, gender, socioeconomic status, educational level, and duration of illness. Rich, thick descriptions and direct quotations from participants were also provided to allow readers to assess the applicability of the findings to other settings. Nevertheless, the study excluded individuals with severe physical disabilities or advanced age who were unable to perform basic self-care activities, as their situations did not align with the study’s focus on active self-care. As a result, the experiences of this specific subgroup were not captured. Additionally, although the first author had a clinical background in rheumatology that improved her sensitivity and understanding during interviews, this familiarity could introduce bias. To minimize this, bracketing and continuous reflexivity—through journaling and field notes—were employed throughout the study. While complete elimination of bias is difficult in qualitative research, transparency in analysis, peer debriefing, and team-based coding review enhanced the study’s credibility.

Conclusion

The findings of this study highlight several challenges individuals with RA face in managing their self-care. The chronic and progressive nature of RA—along with its physical and psychological burdens—can diminish motivation and complicate daily self-management. This study also revealed emotional paradoxes in self-care, showing that patients often navigate contradictory feelings and perceptions as they strive to manage their condition. This study emphasizes the importance of identifying barriers to self-care and implementing supportive strategies tailored to each patient’s individual experiences. While the results point to the value of multifaceted support—including education, psychological care, and rehabilitation—we have carefully reframed our conclusions to reflect what the data suggest, rather than making direct policy recommendations. Further research is needed to explore how cultural, economic, and social factors, along with these emotional paradoxes, influence self-care behaviors in this population.