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Volume 17, Issue 3 (2025)
Iran J War Public Health 2025, 17(3): 243-251 |
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Received: 2025/06/3 | Accepted: 2025/07/15 | Published: 2025/07/19
Received: 2025/06/3 | Accepted: 2025/07/15 | Published: 2025/07/19
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Obeid B, Al-hussein I. Barriers to Self-Care in Patients with Inflammatory Bowel Disease. Iran J War Public Health 2025; 17 (3) :243-251
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B. Obeid *1, I.Q.K. Al-hussein1
1- Department of Adult Nursing, Faculty of Nursing, University of Kufa, Kufa, Iraq
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Introduction
Inflammatory bowel disease (IBD) is a chronic gastrointestinal disorder characterized by persistent or recurrent inflammation of the intestines. It comprises two primary conditions: Crohn’s disease and ulcerative colitis. Although IBD was historically more prevalent in Western countries, its incidence has been rising markedly in Asian nations. This increase is attributed to shifts in dietary habits toward Westernized diets and a decline in healthy lifestyles, which weaken the natural immune system. The disease frequently affects young adults, leading to physical, psychological, and social consequences that impair quality of life and threaten patients’ functional and social independence [1, 2].
Clinical manifestations of IBD include bloody diarrhea, rectal bleeding, abdominal pain, fecal incontinence, fever, and weight loss, all of which significantly impact patients’ daily, professional, and social lives. Extraintestinal complications, such as arthritis, erythema nodosum, uveitis, kidney disease, gallstones, and aphthous stomatitis, may also occur, further increasing the physical and psychological burden on patients. In the absence of a definitive cure, treatment goals focus on achieving remission and preventing relapses, which necessitate a long-term commitment to self-care practices [3].
Self-care is a critical component of chronic disease management. It is defined as the individual’s ability to manage symptoms, treatments, and lifestyle modifications related to their condition. Self-care takes on heightened importance in IBD due to its early onset and long-term influence on psychosocial adjustment and daily functioning. Evidence has demonstrated that self-care behaviors among IBD patients encompass multiple domains, including treatment adherence, dietary management, physical activity, and psychological support. Nevertheless, these practices often encounter ongoing challenges. Patients typically engage in self-care behaviors during specific circumstances, such as mealtimes, symptom recognition and management, and daily occupational activities. Self-care practices among IBD patients can easily be misunderstood, as they may be indistinguishable from those of healthy individuals [4, 5].
Numerous factors have been identified as significantly influencing the health-related quality of life and capacity for self-care among individuals with IBD. These factors include corticosteroid therapy, periods of hospitalization, symptoms resembling irritable bowel syndrome, mood disorders, and frequent disease relapses. Additionally, sociodemographic factors such as gender, smoking habits, work disability, and unemployment considerably impact the health of individuals with IBD [6]. Multiple reasons underlie poor self-care management. Contributing factors include physical disabilities, ineffective medication management, limited knowledge, negative emotions, and certain personality traits. These factors commonly intensify with increased disease activity. Physical and psychological health issues, alongside compromised social well-being, can adversely affect patients’ quality of life [7-9].
Consequently, individuals with IBD often face ongoing challenges in managing their disease independently, especially in light of the limited research addressing their personal experiences with self-care [10]. Patients’ abilities to engage in self-care are shaped by complex factors, including self-efficacy, confidence in their caregiving abilities, and cultural perceptions of illness. A thorough understanding of patients’ subjective experiences, as well as the internal and external barriers they encounter, is essential for enhancing healthcare interventions and improving health-related quality of life [11]. Accordingly, this study aimed to explore the barriers hindering self-care practices among IBD patients through an in-depth understanding of their lived experiences and life contexts.
Participants and Methods
This descriptive qualitative study was conducted at a specialized hospital for gastroenterology and hepatology in Al-Najaf city, from January 15th, 2025, to March 10th, 2025. Participants were interviewed at this hospital during their period of receiving biological therapy.
Semi-structured interviews were used as the primary data collection tool, featuring open-ended questions. These interviews lasted between 15 and 20 minutes and were conducted face-to-face in a calm environment that ensured participants’ privacy and psychological comfort while sharing their personal experiences. Throughout the interviews, there was an interactive exchange between the researcher and the participants to provide detailed accounts of their daily experiences related to the study topic.
This study was approved by the Ethical Committee of the College of Medicine, University of Kufa, prior to data collection. The study objectives were clearly and understandably explained to participants, and they were assured that their participation was entirely voluntary and that they had the right to withdraw at any time without consequences. Written informed consent was obtained from all participants before the interviews. Participants’ names and any personal information that might identify them were not disclosed to ensure complete confidentiality and privacy. Participants did not receive any financial rewards for their participation in the study. The study was conducted in accordance with the Declaration of Helsinki.
Participants were selected using a purposive sampling method, including patients of both sexes and different age groups who were diagnosed with either type of IBD: Crohn’s disease or ulcerative colitis. Participants were required to be able to clearly articulate their experiences, possess rich and in-depth knowledge of managing the disease, and provide voluntary consent to participate in the interviews and audio recordings. Only individuals who demonstrated a willingness to share meaningful barriers and who could respond thoughtfully and reflectively to the interview questions were included. Data collection continued until the point of thematic saturation was reached. Saturation was considered achieved when no new codes or themes emerged from the data. This point was reached after interviewing 16 participants (nine females and seven males).
To ensure the trustworthiness and credibility of the findings, a range of strategies were implemented, including triangulation, continuous review of data throughout the analysis process, and careful and systematic documentation of all research procedures through thick description. The researcher also maintained contextual awareness and self-reflexivity throughout the study by continually reflecting on the role and influence of data collection and analysis.
Basic demographic information was documented for each participant, including age, gender, education level, and disease type (Crohn’s disease or ulcerative colitis). The interviews were conducted face-to-face with written consent from the participants and were audio-recorded, ensuring complete confidentiality. No names or identifying information were collected. After completing all interviews, the recordings were transcribed verbatim in Arabic and then accurately translated into English, preserving the original meaning of the participants’ experiences.
Data were analyzed using reflective thematic analysis, following the six stages outlined by Braun & Clarke, which include in-depth data familiarization, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and finally writing the analytical report. This approach helped uncover recurring and meaningful patterns and experiences that reflect the barriers to self-care for patients with chronic IBD [12].
Findings
The interviews were conducted with 16 participants (9 females and 7 males) with IBD in the hospital (Table 1).
Table 1. Characteristics of the studied patients with inflammatory bowel disease (IBD)
The interviews were manually analyzed, and five themes related to the barriers faced by patients with IBD that prevent them from performing self-care were identified. These themes provide a comprehensive understanding of the barriers patients encounter when engaging in self-care (Table 2).
Table 2. Thematic analysis findings
1. Insufficient knowledge about disease and self-care
This main theme reflected the poor understanding of the disease among patients, including a lack of information about chronic IBD and confusion regarding self-care strategies. The sub-themes include:
Lack of information about the disease
Six participants mentioned they suffer from a lack of understanding of this disease: “It is a disease that suddenly occurred to me, causing me pain, diarrhea, and bleeding. The doctor told me that I have complete ulcers in the right and left colon. I don't know anything else; I feel my information is insufficient and I'm not convinced by it …” (p9)
Inadequate information about self-care
Seven participants indicated that they do not have complete information about self-care steps: “I wish there was information from the beginning. What foods should I avoid? How to… and what sport is appropriate for me to even try to stick to it because I searched on the internet and found that sport is important…...” (p16)
Avoidance of Information About the Disease
Three participants stated that they avoid seeking any information about their disease to prevent thinking about it too much: “I don't want information about the disease so that I don't think about it too much …” (p1)
Lack of communication with healthcare providers
Two participants experienced limited communication with doctors regarding new information and updates about their disease: “I wish there was a way to communicate with the doctor that makes it easier for us to get useful information instead of going to the clinic every time and waiting…” (p5)
2. Physical symptoms as barriers to self-care
This theme describes the debilitating physical symptoms experienced by patients with IBD, which are among the most significant barriers to their ability to perform daily tasks and care for themselves. These symptoms include:
Frequent diarrhea and urgency
Seven participants suffer from frequent diarrhea throughout the day and an inability to control it: “Sometimes I go to the bathroom a lot. Every 5 minutes, every 10 minutes, I go to the bathroom. I am very tired of that. Even when I drink water, my trips to the bathroom increase …” (p9)
Fatigue
Eleven participants reported experiencing fatigue for most of the day and an inability to complete their tasks: “I have very strong fatigue and lethargy, to the point that I can’t move my hands because of my very little energy. This has had a significant impact; I left my job. I can’t complete my work; I was previously very active, but now I can’t go out to work. I can’t do anything else …” (p5)
Abdominal and joint pain
Five participants suffer from abdominal pain that is sometimes severe and difficult to manage, affecting their sleep, ability to eat, and mobility: “I suffer from severe abdominal pain that bothers me. It sometimes lasts more than a day, and even with movement, the pain increases. Sometimes, I spend most of my time lying in bed …” (p10)
Joint pain was expressed by one patient: “I have pain in my joints; it is very strong pain. When the pain increases, I take strong painkillers to reduce my pain for a while to manage my home and work responsibilities, but these drugs relieve the pain for only a short period; after two days, my joint pain returns …” (p1)
Anemia from frequent bleeding
Seven participants suffer from anemia due to frequent bleeding, which causes blood loss, weakness in the body, and loss of consciousness: “I have continuous bleeding and surgery. This happens to me after eating any simple food; I go to the bathroom a lot, bleeding without any output. I try to take many treatments to reduce it. It has caused me severe anemia …” (p9)
3. Psychological and social barriers to effective self-care
This theme reflects the psychological and social pressures that patients face, which are among the most prominent obstacles, following medication adherence barriers, that limit their practice of self-care. These include:
Feelings anxiety
Nine participants reported experiencing anxiety due to the symptoms of the disease, which recur and are difficult to manage: “When the symptoms worsen, I have severe pain and diarrhea with blood. I am very worried. I don’t know what to do. I feel scared …” (p12)
Social isolation
Some participants have withdrawn from social activities and prefer to be alone, expressing a reluctance to speak with anyone, even though they were more social in the past, as stated by eleven participants: “I haven’t been able to go outside the house for more than a year, and until now, I’ve isolated myself. I like to sit alone in the room; I don’t want to talk to anyone…” (p11)
Feelings of shame from disease symptoms
Five participants expressed feelings of embarrassment and shame regarding their disease symptoms when they occur in public, especially when they are unable to control issues such as diarrhea and urgency: “I feel embarrassed about the bag attached to my intestines, as I have to go to the bathroom and change the bag every short while. I am shy about it in public places, especially in cafes with friends…” (p14)
Feelings of hopelessness
Four participants mentioned losing hope for improving their health status because of the chronic nature of the disease and the recurrent periods of exacerbated symptoms: “I constantly think about what will happen to me in the future due to the worsening and persistence of these symptoms. Sometimes I lose hope because they continue, and because there is no definitive cure …” (p1)
Lack of support
Four participants suffer from a lack of support from family, healthcare providers, and friends who do not understand how this disease affects them: “My family doesn’t care about my health; they believe it is a simple inflammation that doesn’t need going to doctors, so they neglect my health even when the symptoms increase …” (p4)
Needing for psychologist
Two participants expressed the need to see a psychiatrist due to the impact of their disease on their mental state: “My psychological state is exhausted; I feel like I need to see a psychiatrist. I told my family, but they said I don’t need it; only those with mental illnesses go to a psychiatrist ...” (p10)
Workload and life responsibilities
Seven participants stated that they struggle with home or work responsibilities, which affects their ability to practice self-care: “I don’t have anyone to help me care for my children and manage home responsibilities. I feel very tired, but I can’t take a rest, so I neglect my health; my children are more important than my health …” (p12)
4. Medication adherence barriers
These barriers are the most commonly mentioned by participants. They refer to factors that prevent patients from adhering to their treatments:
Discontinuing drugs due to side effects
Nine participants stopped taking their medications due to side effects such as abdominal pain, nausea, and, rarely, joint pain: “Some drugs made me feel nauseous, and sometimes they increased my joint pain, so I stopped taking them. I fear the side effects they cause me …” (p1)
Discontinuing due to ineffectiveness of treatment
Seven participants felt that these medications did not work or did not improve their health, so they stopped taking them: “I neglected the medication because of my mental state. I got bored with it because it didn’t seem to help. Some days I take the medication, and other days I don’t. I’m tired of the medication not benefiting me …” (p3)
Stopping medication when symptoms improve
Eight participants stopped taking their medications when their symptoms improved, believing they no longer needed them: “When I feel better, I stop the doctor’s treatment for a while, but I return to the treatment after I feel my health deteriorating …” (p2)
Unavailability of therapy
Nine participants stated that they sometimes suffer from the unavailability of their therapies in the hospital or in the city, especially biological therapy: “During the previous period, the biological treatment was not available more than four times, and it was not present. My health was affected, and I cannot buy it because it is expensive. It was also not available in my city …” (p4)
High-cost medication
Eleven participants suffer from the high cost of medications, making them unable to buy the drugs, which leads them to stop taking them: “The cost of treatment was very expensive. I push myself to continue working to cover the financial need. One strip costs 13,000 IQD, and I need this strip every day …” (p8)
Forgetting to take medication
Six participants reported forgetting the scheduled times for taking their medications or not taking them due to their responsibilities: “Sometimes, I delay taking my medication on time because I’m busy with work; I take it at night or the next day, or sometimes I don’t take it at all …” (p14)
5. Dietary adherence barriers
This theme reflects barriers that prevent patients from adhering to dietary guidance, including:
Lack of dietary guidance
Five participants mentioned that they do not have comprehensive instructions about which foods are suitable for them: “My doctor told me to eat all kinds of food; there is no specific food to avoid, but I have avoided dairy, spicy foods, and legumes because I was influenced by him. I didn’t know what other foods I should avoid …” (p3)
Difficulty adhering to the diet due to appetite
Eight participants experience appetite issues that prevent them from adhering to their dietary restrictions, particularly regarding foods they like to eat, such as sweets, legumes, and vegetables: “Honestly, I can’t avoid all vegetables, legumes, and sweets. Sometimes my appetite prevents me from committing to foods that are suitable for me because I like these foods …” (p2)
Difficulty following a diet in social settings
Four participants mentioned their inability to adhere to their diet in social situations, as they cannot refuse the foods offered to them: “When I go out with friends to restaurants or social events, I eat forbidden foods because I feel embarrassed to refuse what is offered to me …” (p10)
Fear of eating due to worsening symptoms
Seven participants reported stopping eating altogether for long periods to avoid exacerbating their symptoms, as they feel their symptoms increase when they eat: “I stopped eating because any food I eat hurts me sometimes. I go for more than a day without food, and even when I do eat, I only have one very small meal …” (p16)
Discussion
This study aimed to explore the barriers hindering self-care practices among IBD patients through an in-depth understanding of their lived experiences and life contexts. We found significant barriers related to patients’ insufficient knowledge of IBD, which negatively impacted their ability to manage self-care. Subthemes related to this theme included lack of information about the disease, inadequate information about self-care, avoidance of seeking information about the disease, and lack of communication with healthcare providers to obtain information about the disease. These findings are consistent with those of a qualitative study conducted by Lesnovska et al., which aimed to explore the need for knowledge as expressed by patients diagnosed with IBD. Their findings showed that patients lack an adequate understanding of the disease course and the relationship between symptoms and complications. They also face difficulties in understanding treatment and managing daily life, particularly during the post-diagnosis and relapse periods [13]. Wheat et al.’s study also identified several educational barriers associated with non-adherence, including information overload, ineffective communication with healthcare providers, limited time allocated by medical staff, and factors related to the patient’s ability to understand and make decisions [14]. A qualitative systematic review by Norouzkhani et al. demonstrated that patients with IBD often lack basic information regarding medications, disease course, and lifestyle adjustments, which in turn impacts treatment adherence [15]. Khalil et al. also report significant knowledge gaps among patients, often leading them to resort to unreliable sources for information [16]. These findings support the current study’s conclusion that poor knowledge about the disease and self-care is a major barrier, requiring structured educational interventions and effective partnerships with healthcare providers to enhance patients’ understanding, coping, and adherence.
Physical symptoms associated with IBD constitute a significant barrier to patients’ adherence to self-care practices. Several subthemes emerged, including frequent diarrhea, fatigue, abdominal and joint pain, and anemia resulting from frequent bleeding. Patients described these symptoms as limiting their mobility and negatively impacting their quality of life, including their ability to work, participate socially, adhere to treatment, and engage in physical activity. These findings are consistent with those of Byron et al., showing that the most significant challenges faced by patients with IBD are related to bothersome and persistent physical symptoms, such as diarrhea, abdominal pain, incontinence, fatigue, joint pain, bleeding, weight loss, and bloating—symptoms that affected patients even during periods of remission [17]. Fagan et al. also demonstrated that fatigue and abdominal pain are among the most common barriers to patients’ ability to engage in physical activity, and these barriers are more severe in patients in the active phase of the disease than in those in remission [18]. In the same context, Derbey et al. report that persistent fatigue and fear of diarrhea are the most significant barriers preventing patients from exercising or engaging in daily activities, leading to a decline in quality of life [19]. These findings confirm that the physical burden of symptoms is not limited to physical pain alone but also extends to affect the patient’s behavioral and psychological aspects, thereby reducing their ability to care for themselves and respond to treatment requirements. This makes addressing these symptoms an essential component of any intervention aimed at promoting self-care in this group.
Psychosocial barriers represented a major challenge for patients in adhering to self-care. Subthemes related to this theme included feelings of anxiety about symptoms, hopelessness, social isolation, lack of social support, the need for specialized psychological support, and the stresses of daily life and responsibilities. Participants expressed psychological and social withdrawal due to embarrassment about their symptoms, especially in social situations, in addition to their lack of adequate emotional and professional support. These findings are consistent with those of Popov et al., identifying “psychosocial impacts” as a key theme that negatively affects the lives of people with IBD, such as low self-esteem, isolation, shame due to incontinence, and the overall psychological burden of the disease. They also demonstrate a significant need for emotional support, reflecting a gap in the psychological care provided [20].
On the other hand, Lawrence and Choudhary indicate that 58% of participants experience psychosocial barriers that hinder access to support, most notably time constraints, lack of knowledge of available services, and the cost of psychological support. There are additional challenges, such as stigma, lack of motivation, and emotional concerns, which are often not taken into account by healthcare providers [21]. Wilburn et al. highlight the impact of the disease on deteriorating psychosocial quality of life, as patients expressed feelings of anxiety and fear, changes in social roles, difficulties in maintaining intimate relationships, loss of sexual desire, and caution in emotional engagement. The study also shows that patients have difficulty discussing their condition with others, which increases their feelings of isolation [22].
Taken together, these findings, including our results, confirm that ignoring psychosocial aspects may exacerbate the impact of the disease on a patient’s life and impair their ability to adhere to self-care. Therefore, providing comprehensive psychosocial support services is an urgent necessity to improve patients’ response to treatment and quality of life.
Several barriers prevented IBD patients from adhering to their medications. Subthemes related to this theme included refusal to take medications due to side effects, treatment ineffectiveness in improving symptoms, symptom improvement leading to drug discontinuation, high treatment costs, unavailability of biological therapy, and, finally, forgetting to take medications. These factors indicate the diverse challenges patients face in adhering to their prescribed treatments, reflecting an urgent need to address these barriers in treatment plans.
These findings are consistent with those of Xu et al., exploring the factors influencing treatment adherence among IBD patients in China. They report seven main themes, including treatment refusal due to lack of acceptance of the disease, insufficient knowledge of the disease, beliefs about treatment, perceived effectiveness of treatment, side effects, treatment costs, and psychological and personal factors. These factors significantly contribute to low rates of treatment adherence among patients [23]. Furthermore, Hommel and Baldassano indicate that forgetfulness is the most common barrier to treatment non-adherence, followed by interference with daily activities, such as work or school, difficulty swallowing pills, and being away from home, which leads to patients’ lack of regular medication intake [24].
On the other hand, a systematic review by King et al. highlights that poor patient understanding of treatment, difficulty accessing medications, and lack of organization and individual planning are the main modifiable factors contributing to treatment non-adherence. The review demonstrated that patient understanding of treatment and its relationship to its effect on symptoms is a crucial factor in motivating treatment adherence [25]. These studies indicate that patients experience a variety of barriers to treatment adherence, including a combination of psychological, practical, and financial issues. Therefore, providing clear educational information, psychological support, and close follow-up by healthcare providers is essential to improving treatment adherence levels in patients with IBD.
Patients with IBD experienced several barriers to dietary adherence, including a lack of nutritional guidance from specialists, fear of eating certain foods due to worsening symptoms, impacts on appetite and cravings, as well as social pressures associated with special occasions and eating outside the home. These findings are consistent with those of a qualitative study conducted by Noejovich et al., exploring the subjective barriers patients face when attempting to modify their diet. The report has four main themes with 12 subthemes, including a lack of nutritional guidance from healthcare providers, difficulty eating outside the home, challenges in social life, and psychological factors related to nutrition, such as emotional conflicts. This indicates the complex impact of these barriers on patients’ dietary behavior [26].
This theme is also supported by another study conducted by Szeto et al., using a qualitative mixed-method approach to understand patients’ experiences and perceptions of dietary adherence. They conclude that patients face significant difficulties in identifying effective diets and obtaining appropriate foods, in addition to the challenges of personal adherence and social and familial obstacles to implementing the diet [27]. Therefore, these studies highlight the need for more targeted and personalized nutritional interventions that take into account the psychological, social, and environmental factors surrounding the patient, which contribute to improving their dietary adherence and quality of life.
This study has several limitations that should be considered when interpreting the results. First, the limited sample size may affect the ability to generalize the findings to all IBD patients in Iraq, as it may not fully reflect the diversity of experiences and varying health conditions. Second, the study was conducted within a specific healthcare setting, which may limit the representativeness of the results for other regions or healthcare facilities with different capabilities and population distributions. Third, there is a potential for response bias, as participants may tend to provide socially desirable answers or may have difficulty recalling precise details related to self-care adherence. Finally, given the cross-sectional design, causal relationships between the identified barriers and self-care adherence cannot be inferred. These limitations underscore the importance of caution when generalizing the findings and highlight the need for broader and longitudinal research to better understand these relationships within the Iraqi context.
Based on these limitations, several recommendations are proposed to enhance self-care practices among patients with IBD. First, targeted health education programs should be developed to provide clear, simplified, and customized information about the nature of the disease, its symptoms, coping methods, and medications, aiming to reduce confusion and improve understanding. Second, communication channels between patients and healthcare providers should be established and maintained through continuous, accessible means such as telephone or electronic consultations to address patients’ needs promptly without requiring frequent hospital visits. Third, integrated medical interventions are necessary to tackle major physical symptoms like diarrhea, fatigue, pain, and anemia, with individualized treatment plans tailored to each patient’s condition to improve their quality of life. Fourth, psychosocial support services should be provided to patients, alongside education for families and caregivers, to foster supportive environments that alleviate feelings of isolation, anxiety, and hopelessness. Fifth, awareness programs emphasizing medication adherence and solutions for managing side effects should be implemented, along with efforts to improve access to affordable medications and biological therapies. Lastly, individualized nutritional guidance is recommended, empowering nutritionists to design personalized diets that consider patients’ health status and the social-psychological conditions affecting adherence.
Conclusion
The most prominent barriers to self-care in patients with inflammatory bowel disease are a lack of knowledge about the disease, physical symptoms, and difficulties adhering to a diet and medications.
Acknowledgments: I extend my sincere thanks and appreciation to everyone who contributed to the completion of this research, especially the esteemed participants who took the time to respond and enrich the results. I also thank everyone who provided academic or technical support during the preparation stages of this work.
Ethical Permissions: The study received ethical approval from the Ethical Committee for Clinical Studies at Kufa Faculty of Medicine, University of Kufa. Approval was granted under reference number MEC-91 on 10/11/2024. All participants provided informed consent. Ethical oversight was provided by Dr. Najah R. Hadi, Professor and Consultant, and Head of the Ethical Committee.
Conflicts of Interests: No conflicts of interests were declared.
Authors' Contribution: Obeid BK (First Author), Introduction Writer/Methodologist/Main Researcher/Discussion Writer/Statistical Analyst (60%); Al-hussein IQK (Second Author), Introduction Writer/Methodologist/Assistant Researcher/Discussion Writer/Statistical Analyst (40%)
Funding/Support: None to declare.
Inflammatory bowel disease (IBD) is a chronic gastrointestinal disorder characterized by persistent or recurrent inflammation of the intestines. It comprises two primary conditions: Crohn’s disease and ulcerative colitis. Although IBD was historically more prevalent in Western countries, its incidence has been rising markedly in Asian nations. This increase is attributed to shifts in dietary habits toward Westernized diets and a decline in healthy lifestyles, which weaken the natural immune system. The disease frequently affects young adults, leading to physical, psychological, and social consequences that impair quality of life and threaten patients’ functional and social independence [1, 2].
Clinical manifestations of IBD include bloody diarrhea, rectal bleeding, abdominal pain, fecal incontinence, fever, and weight loss, all of which significantly impact patients’ daily, professional, and social lives. Extraintestinal complications, such as arthritis, erythema nodosum, uveitis, kidney disease, gallstones, and aphthous stomatitis, may also occur, further increasing the physical and psychological burden on patients. In the absence of a definitive cure, treatment goals focus on achieving remission and preventing relapses, which necessitate a long-term commitment to self-care practices [3].
Self-care is a critical component of chronic disease management. It is defined as the individual’s ability to manage symptoms, treatments, and lifestyle modifications related to their condition. Self-care takes on heightened importance in IBD due to its early onset and long-term influence on psychosocial adjustment and daily functioning. Evidence has demonstrated that self-care behaviors among IBD patients encompass multiple domains, including treatment adherence, dietary management, physical activity, and psychological support. Nevertheless, these practices often encounter ongoing challenges. Patients typically engage in self-care behaviors during specific circumstances, such as mealtimes, symptom recognition and management, and daily occupational activities. Self-care practices among IBD patients can easily be misunderstood, as they may be indistinguishable from those of healthy individuals [4, 5].
Numerous factors have been identified as significantly influencing the health-related quality of life and capacity for self-care among individuals with IBD. These factors include corticosteroid therapy, periods of hospitalization, symptoms resembling irritable bowel syndrome, mood disorders, and frequent disease relapses. Additionally, sociodemographic factors such as gender, smoking habits, work disability, and unemployment considerably impact the health of individuals with IBD [6]. Multiple reasons underlie poor self-care management. Contributing factors include physical disabilities, ineffective medication management, limited knowledge, negative emotions, and certain personality traits. These factors commonly intensify with increased disease activity. Physical and psychological health issues, alongside compromised social well-being, can adversely affect patients’ quality of life [7-9].
Consequently, individuals with IBD often face ongoing challenges in managing their disease independently, especially in light of the limited research addressing their personal experiences with self-care [10]. Patients’ abilities to engage in self-care are shaped by complex factors, including self-efficacy, confidence in their caregiving abilities, and cultural perceptions of illness. A thorough understanding of patients’ subjective experiences, as well as the internal and external barriers they encounter, is essential for enhancing healthcare interventions and improving health-related quality of life [11]. Accordingly, this study aimed to explore the barriers hindering self-care practices among IBD patients through an in-depth understanding of their lived experiences and life contexts.
Participants and Methods
This descriptive qualitative study was conducted at a specialized hospital for gastroenterology and hepatology in Al-Najaf city, from January 15th, 2025, to March 10th, 2025. Participants were interviewed at this hospital during their period of receiving biological therapy.
Semi-structured interviews were used as the primary data collection tool, featuring open-ended questions. These interviews lasted between 15 and 20 minutes and were conducted face-to-face in a calm environment that ensured participants’ privacy and psychological comfort while sharing their personal experiences. Throughout the interviews, there was an interactive exchange between the researcher and the participants to provide detailed accounts of their daily experiences related to the study topic.
This study was approved by the Ethical Committee of the College of Medicine, University of Kufa, prior to data collection. The study objectives were clearly and understandably explained to participants, and they were assured that their participation was entirely voluntary and that they had the right to withdraw at any time without consequences. Written informed consent was obtained from all participants before the interviews. Participants’ names and any personal information that might identify them were not disclosed to ensure complete confidentiality and privacy. Participants did not receive any financial rewards for their participation in the study. The study was conducted in accordance with the Declaration of Helsinki.
Participants were selected using a purposive sampling method, including patients of both sexes and different age groups who were diagnosed with either type of IBD: Crohn’s disease or ulcerative colitis. Participants were required to be able to clearly articulate their experiences, possess rich and in-depth knowledge of managing the disease, and provide voluntary consent to participate in the interviews and audio recordings. Only individuals who demonstrated a willingness to share meaningful barriers and who could respond thoughtfully and reflectively to the interview questions were included. Data collection continued until the point of thematic saturation was reached. Saturation was considered achieved when no new codes or themes emerged from the data. This point was reached after interviewing 16 participants (nine females and seven males).
To ensure the trustworthiness and credibility of the findings, a range of strategies were implemented, including triangulation, continuous review of data throughout the analysis process, and careful and systematic documentation of all research procedures through thick description. The researcher also maintained contextual awareness and self-reflexivity throughout the study by continually reflecting on the role and influence of data collection and analysis.
Basic demographic information was documented for each participant, including age, gender, education level, and disease type (Crohn’s disease or ulcerative colitis). The interviews were conducted face-to-face with written consent from the participants and were audio-recorded, ensuring complete confidentiality. No names or identifying information were collected. After completing all interviews, the recordings were transcribed verbatim in Arabic and then accurately translated into English, preserving the original meaning of the participants’ experiences.
Data were analyzed using reflective thematic analysis, following the six stages outlined by Braun & Clarke, which include in-depth data familiarization, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and finally writing the analytical report. This approach helped uncover recurring and meaningful patterns and experiences that reflect the barriers to self-care for patients with chronic IBD [12].
Findings
The interviews were conducted with 16 participants (9 females and 7 males) with IBD in the hospital (Table 1).
Table 1. Characteristics of the studied patients with inflammatory bowel disease (IBD)
The interviews were manually analyzed, and five themes related to the barriers faced by patients with IBD that prevent them from performing self-care were identified. These themes provide a comprehensive understanding of the barriers patients encounter when engaging in self-care (Table 2).
Table 2. Thematic analysis findings
1. Insufficient knowledge about disease and self-care
This main theme reflected the poor understanding of the disease among patients, including a lack of information about chronic IBD and confusion regarding self-care strategies. The sub-themes include:
Lack of information about the disease
Six participants mentioned they suffer from a lack of understanding of this disease: “It is a disease that suddenly occurred to me, causing me pain, diarrhea, and bleeding. The doctor told me that I have complete ulcers in the right and left colon. I don't know anything else; I feel my information is insufficient and I'm not convinced by it …” (p9)
Inadequate information about self-care
Seven participants indicated that they do not have complete information about self-care steps: “I wish there was information from the beginning. What foods should I avoid? How to… and what sport is appropriate for me to even try to stick to it because I searched on the internet and found that sport is important…...” (p16)
Avoidance of Information About the Disease
Three participants stated that they avoid seeking any information about their disease to prevent thinking about it too much: “I don't want information about the disease so that I don't think about it too much …” (p1)
Lack of communication with healthcare providers
Two participants experienced limited communication with doctors regarding new information and updates about their disease: “I wish there was a way to communicate with the doctor that makes it easier for us to get useful information instead of going to the clinic every time and waiting…” (p5)
2. Physical symptoms as barriers to self-care
This theme describes the debilitating physical symptoms experienced by patients with IBD, which are among the most significant barriers to their ability to perform daily tasks and care for themselves. These symptoms include:
Frequent diarrhea and urgency
Seven participants suffer from frequent diarrhea throughout the day and an inability to control it: “Sometimes I go to the bathroom a lot. Every 5 minutes, every 10 minutes, I go to the bathroom. I am very tired of that. Even when I drink water, my trips to the bathroom increase …” (p9)
Fatigue
Eleven participants reported experiencing fatigue for most of the day and an inability to complete their tasks: “I have very strong fatigue and lethargy, to the point that I can’t move my hands because of my very little energy. This has had a significant impact; I left my job. I can’t complete my work; I was previously very active, but now I can’t go out to work. I can’t do anything else …” (p5)
Abdominal and joint pain
Five participants suffer from abdominal pain that is sometimes severe and difficult to manage, affecting their sleep, ability to eat, and mobility: “I suffer from severe abdominal pain that bothers me. It sometimes lasts more than a day, and even with movement, the pain increases. Sometimes, I spend most of my time lying in bed …” (p10)
Joint pain was expressed by one patient: “I have pain in my joints; it is very strong pain. When the pain increases, I take strong painkillers to reduce my pain for a while to manage my home and work responsibilities, but these drugs relieve the pain for only a short period; after two days, my joint pain returns …” (p1)
Anemia from frequent bleeding
Seven participants suffer from anemia due to frequent bleeding, which causes blood loss, weakness in the body, and loss of consciousness: “I have continuous bleeding and surgery. This happens to me after eating any simple food; I go to the bathroom a lot, bleeding without any output. I try to take many treatments to reduce it. It has caused me severe anemia …” (p9)
3. Psychological and social barriers to effective self-care
This theme reflects the psychological and social pressures that patients face, which are among the most prominent obstacles, following medication adherence barriers, that limit their practice of self-care. These include:
Feelings anxiety
Nine participants reported experiencing anxiety due to the symptoms of the disease, which recur and are difficult to manage: “When the symptoms worsen, I have severe pain and diarrhea with blood. I am very worried. I don’t know what to do. I feel scared …” (p12)
Social isolation
Some participants have withdrawn from social activities and prefer to be alone, expressing a reluctance to speak with anyone, even though they were more social in the past, as stated by eleven participants: “I haven’t been able to go outside the house for more than a year, and until now, I’ve isolated myself. I like to sit alone in the room; I don’t want to talk to anyone…” (p11)
Feelings of shame from disease symptoms
Five participants expressed feelings of embarrassment and shame regarding their disease symptoms when they occur in public, especially when they are unable to control issues such as diarrhea and urgency: “I feel embarrassed about the bag attached to my intestines, as I have to go to the bathroom and change the bag every short while. I am shy about it in public places, especially in cafes with friends…” (p14)
Feelings of hopelessness
Four participants mentioned losing hope for improving their health status because of the chronic nature of the disease and the recurrent periods of exacerbated symptoms: “I constantly think about what will happen to me in the future due to the worsening and persistence of these symptoms. Sometimes I lose hope because they continue, and because there is no definitive cure …” (p1)
Lack of support
Four participants suffer from a lack of support from family, healthcare providers, and friends who do not understand how this disease affects them: “My family doesn’t care about my health; they believe it is a simple inflammation that doesn’t need going to doctors, so they neglect my health even when the symptoms increase …” (p4)
Needing for psychologist
Two participants expressed the need to see a psychiatrist due to the impact of their disease on their mental state: “My psychological state is exhausted; I feel like I need to see a psychiatrist. I told my family, but they said I don’t need it; only those with mental illnesses go to a psychiatrist ...” (p10)
Workload and life responsibilities
Seven participants stated that they struggle with home or work responsibilities, which affects their ability to practice self-care: “I don’t have anyone to help me care for my children and manage home responsibilities. I feel very tired, but I can’t take a rest, so I neglect my health; my children are more important than my health …” (p12)
4. Medication adherence barriers
These barriers are the most commonly mentioned by participants. They refer to factors that prevent patients from adhering to their treatments:
Discontinuing drugs due to side effects
Nine participants stopped taking their medications due to side effects such as abdominal pain, nausea, and, rarely, joint pain: “Some drugs made me feel nauseous, and sometimes they increased my joint pain, so I stopped taking them. I fear the side effects they cause me …” (p1)
Discontinuing due to ineffectiveness of treatment
Seven participants felt that these medications did not work or did not improve their health, so they stopped taking them: “I neglected the medication because of my mental state. I got bored with it because it didn’t seem to help. Some days I take the medication, and other days I don’t. I’m tired of the medication not benefiting me …” (p3)
Stopping medication when symptoms improve
Eight participants stopped taking their medications when their symptoms improved, believing they no longer needed them: “When I feel better, I stop the doctor’s treatment for a while, but I return to the treatment after I feel my health deteriorating …” (p2)
Unavailability of therapy
Nine participants stated that they sometimes suffer from the unavailability of their therapies in the hospital or in the city, especially biological therapy: “During the previous period, the biological treatment was not available more than four times, and it was not present. My health was affected, and I cannot buy it because it is expensive. It was also not available in my city …” (p4)
High-cost medication
Eleven participants suffer from the high cost of medications, making them unable to buy the drugs, which leads them to stop taking them: “The cost of treatment was very expensive. I push myself to continue working to cover the financial need. One strip costs 13,000 IQD, and I need this strip every day …” (p8)
Forgetting to take medication
Six participants reported forgetting the scheduled times for taking their medications or not taking them due to their responsibilities: “Sometimes, I delay taking my medication on time because I’m busy with work; I take it at night or the next day, or sometimes I don’t take it at all …” (p14)
5. Dietary adherence barriers
This theme reflects barriers that prevent patients from adhering to dietary guidance, including:
Lack of dietary guidance
Five participants mentioned that they do not have comprehensive instructions about which foods are suitable for them: “My doctor told me to eat all kinds of food; there is no specific food to avoid, but I have avoided dairy, spicy foods, and legumes because I was influenced by him. I didn’t know what other foods I should avoid …” (p3)
Difficulty adhering to the diet due to appetite
Eight participants experience appetite issues that prevent them from adhering to their dietary restrictions, particularly regarding foods they like to eat, such as sweets, legumes, and vegetables: “Honestly, I can’t avoid all vegetables, legumes, and sweets. Sometimes my appetite prevents me from committing to foods that are suitable for me because I like these foods …” (p2)
Difficulty following a diet in social settings
Four participants mentioned their inability to adhere to their diet in social situations, as they cannot refuse the foods offered to them: “When I go out with friends to restaurants or social events, I eat forbidden foods because I feel embarrassed to refuse what is offered to me …” (p10)
Fear of eating due to worsening symptoms
Seven participants reported stopping eating altogether for long periods to avoid exacerbating their symptoms, as they feel their symptoms increase when they eat: “I stopped eating because any food I eat hurts me sometimes. I go for more than a day without food, and even when I do eat, I only have one very small meal …” (p16)
Discussion
This study aimed to explore the barriers hindering self-care practices among IBD patients through an in-depth understanding of their lived experiences and life contexts. We found significant barriers related to patients’ insufficient knowledge of IBD, which negatively impacted their ability to manage self-care. Subthemes related to this theme included lack of information about the disease, inadequate information about self-care, avoidance of seeking information about the disease, and lack of communication with healthcare providers to obtain information about the disease. These findings are consistent with those of a qualitative study conducted by Lesnovska et al., which aimed to explore the need for knowledge as expressed by patients diagnosed with IBD. Their findings showed that patients lack an adequate understanding of the disease course and the relationship between symptoms and complications. They also face difficulties in understanding treatment and managing daily life, particularly during the post-diagnosis and relapse periods [13]. Wheat et al.’s study also identified several educational barriers associated with non-adherence, including information overload, ineffective communication with healthcare providers, limited time allocated by medical staff, and factors related to the patient’s ability to understand and make decisions [14]. A qualitative systematic review by Norouzkhani et al. demonstrated that patients with IBD often lack basic information regarding medications, disease course, and lifestyle adjustments, which in turn impacts treatment adherence [15]. Khalil et al. also report significant knowledge gaps among patients, often leading them to resort to unreliable sources for information [16]. These findings support the current study’s conclusion that poor knowledge about the disease and self-care is a major barrier, requiring structured educational interventions and effective partnerships with healthcare providers to enhance patients’ understanding, coping, and adherence.
Physical symptoms associated with IBD constitute a significant barrier to patients’ adherence to self-care practices. Several subthemes emerged, including frequent diarrhea, fatigue, abdominal and joint pain, and anemia resulting from frequent bleeding. Patients described these symptoms as limiting their mobility and negatively impacting their quality of life, including their ability to work, participate socially, adhere to treatment, and engage in physical activity. These findings are consistent with those of Byron et al., showing that the most significant challenges faced by patients with IBD are related to bothersome and persistent physical symptoms, such as diarrhea, abdominal pain, incontinence, fatigue, joint pain, bleeding, weight loss, and bloating—symptoms that affected patients even during periods of remission [17]. Fagan et al. also demonstrated that fatigue and abdominal pain are among the most common barriers to patients’ ability to engage in physical activity, and these barriers are more severe in patients in the active phase of the disease than in those in remission [18]. In the same context, Derbey et al. report that persistent fatigue and fear of diarrhea are the most significant barriers preventing patients from exercising or engaging in daily activities, leading to a decline in quality of life [19]. These findings confirm that the physical burden of symptoms is not limited to physical pain alone but also extends to affect the patient’s behavioral and psychological aspects, thereby reducing their ability to care for themselves and respond to treatment requirements. This makes addressing these symptoms an essential component of any intervention aimed at promoting self-care in this group.
Psychosocial barriers represented a major challenge for patients in adhering to self-care. Subthemes related to this theme included feelings of anxiety about symptoms, hopelessness, social isolation, lack of social support, the need for specialized psychological support, and the stresses of daily life and responsibilities. Participants expressed psychological and social withdrawal due to embarrassment about their symptoms, especially in social situations, in addition to their lack of adequate emotional and professional support. These findings are consistent with those of Popov et al., identifying “psychosocial impacts” as a key theme that negatively affects the lives of people with IBD, such as low self-esteem, isolation, shame due to incontinence, and the overall psychological burden of the disease. They also demonstrate a significant need for emotional support, reflecting a gap in the psychological care provided [20].
On the other hand, Lawrence and Choudhary indicate that 58% of participants experience psychosocial barriers that hinder access to support, most notably time constraints, lack of knowledge of available services, and the cost of psychological support. There are additional challenges, such as stigma, lack of motivation, and emotional concerns, which are often not taken into account by healthcare providers [21]. Wilburn et al. highlight the impact of the disease on deteriorating psychosocial quality of life, as patients expressed feelings of anxiety and fear, changes in social roles, difficulties in maintaining intimate relationships, loss of sexual desire, and caution in emotional engagement. The study also shows that patients have difficulty discussing their condition with others, which increases their feelings of isolation [22].
Taken together, these findings, including our results, confirm that ignoring psychosocial aspects may exacerbate the impact of the disease on a patient’s life and impair their ability to adhere to self-care. Therefore, providing comprehensive psychosocial support services is an urgent necessity to improve patients’ response to treatment and quality of life.
Several barriers prevented IBD patients from adhering to their medications. Subthemes related to this theme included refusal to take medications due to side effects, treatment ineffectiveness in improving symptoms, symptom improvement leading to drug discontinuation, high treatment costs, unavailability of biological therapy, and, finally, forgetting to take medications. These factors indicate the diverse challenges patients face in adhering to their prescribed treatments, reflecting an urgent need to address these barriers in treatment plans.
These findings are consistent with those of Xu et al., exploring the factors influencing treatment adherence among IBD patients in China. They report seven main themes, including treatment refusal due to lack of acceptance of the disease, insufficient knowledge of the disease, beliefs about treatment, perceived effectiveness of treatment, side effects, treatment costs, and psychological and personal factors. These factors significantly contribute to low rates of treatment adherence among patients [23]. Furthermore, Hommel and Baldassano indicate that forgetfulness is the most common barrier to treatment non-adherence, followed by interference with daily activities, such as work or school, difficulty swallowing pills, and being away from home, which leads to patients’ lack of regular medication intake [24].
On the other hand, a systematic review by King et al. highlights that poor patient understanding of treatment, difficulty accessing medications, and lack of organization and individual planning are the main modifiable factors contributing to treatment non-adherence. The review demonstrated that patient understanding of treatment and its relationship to its effect on symptoms is a crucial factor in motivating treatment adherence [25]. These studies indicate that patients experience a variety of barriers to treatment adherence, including a combination of psychological, practical, and financial issues. Therefore, providing clear educational information, psychological support, and close follow-up by healthcare providers is essential to improving treatment adherence levels in patients with IBD.
Patients with IBD experienced several barriers to dietary adherence, including a lack of nutritional guidance from specialists, fear of eating certain foods due to worsening symptoms, impacts on appetite and cravings, as well as social pressures associated with special occasions and eating outside the home. These findings are consistent with those of a qualitative study conducted by Noejovich et al., exploring the subjective barriers patients face when attempting to modify their diet. The report has four main themes with 12 subthemes, including a lack of nutritional guidance from healthcare providers, difficulty eating outside the home, challenges in social life, and psychological factors related to nutrition, such as emotional conflicts. This indicates the complex impact of these barriers on patients’ dietary behavior [26].
This theme is also supported by another study conducted by Szeto et al., using a qualitative mixed-method approach to understand patients’ experiences and perceptions of dietary adherence. They conclude that patients face significant difficulties in identifying effective diets and obtaining appropriate foods, in addition to the challenges of personal adherence and social and familial obstacles to implementing the diet [27]. Therefore, these studies highlight the need for more targeted and personalized nutritional interventions that take into account the psychological, social, and environmental factors surrounding the patient, which contribute to improving their dietary adherence and quality of life.
This study has several limitations that should be considered when interpreting the results. First, the limited sample size may affect the ability to generalize the findings to all IBD patients in Iraq, as it may not fully reflect the diversity of experiences and varying health conditions. Second, the study was conducted within a specific healthcare setting, which may limit the representativeness of the results for other regions or healthcare facilities with different capabilities and population distributions. Third, there is a potential for response bias, as participants may tend to provide socially desirable answers or may have difficulty recalling precise details related to self-care adherence. Finally, given the cross-sectional design, causal relationships between the identified barriers and self-care adherence cannot be inferred. These limitations underscore the importance of caution when generalizing the findings and highlight the need for broader and longitudinal research to better understand these relationships within the Iraqi context.
Based on these limitations, several recommendations are proposed to enhance self-care practices among patients with IBD. First, targeted health education programs should be developed to provide clear, simplified, and customized information about the nature of the disease, its symptoms, coping methods, and medications, aiming to reduce confusion and improve understanding. Second, communication channels between patients and healthcare providers should be established and maintained through continuous, accessible means such as telephone or electronic consultations to address patients’ needs promptly without requiring frequent hospital visits. Third, integrated medical interventions are necessary to tackle major physical symptoms like diarrhea, fatigue, pain, and anemia, with individualized treatment plans tailored to each patient’s condition to improve their quality of life. Fourth, psychosocial support services should be provided to patients, alongside education for families and caregivers, to foster supportive environments that alleviate feelings of isolation, anxiety, and hopelessness. Fifth, awareness programs emphasizing medication adherence and solutions for managing side effects should be implemented, along with efforts to improve access to affordable medications and biological therapies. Lastly, individualized nutritional guidance is recommended, empowering nutritionists to design personalized diets that consider patients’ health status and the social-psychological conditions affecting adherence.
Conclusion
The most prominent barriers to self-care in patients with inflammatory bowel disease are a lack of knowledge about the disease, physical symptoms, and difficulties adhering to a diet and medications.
Acknowledgments: I extend my sincere thanks and appreciation to everyone who contributed to the completion of this research, especially the esteemed participants who took the time to respond and enrich the results. I also thank everyone who provided academic or technical support during the preparation stages of this work.
Ethical Permissions: The study received ethical approval from the Ethical Committee for Clinical Studies at Kufa Faculty of Medicine, University of Kufa. Approval was granted under reference number MEC-91 on 10/11/2024. All participants provided informed consent. Ethical oversight was provided by Dr. Najah R. Hadi, Professor and Consultant, and Head of the Ethical Committee.
Conflicts of Interests: No conflicts of interests were declared.
Authors' Contribution: Obeid BK (First Author), Introduction Writer/Methodologist/Main Researcher/Discussion Writer/Statistical Analyst (60%); Al-hussein IQK (Second Author), Introduction Writer/Methodologist/Assistant Researcher/Discussion Writer/Statistical Analyst (40%)
Funding/Support: None to declare.
Keywords:
Patients [MeSH], Self-Care [MeSH], Inflammatory Bowel Disease [MeSH], Physical Barriers [MeSH], Knowledge [MeSH]
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