Introduction
Multiple sclerosis (MS) is a chronic disease characterized by extensive changes in gray and white matter, destruction of myelin, and damage to axons in the central nervous system. MS primarily manifests in adults, predominantly affecting women aged 20 to 40 years [
1]. Research indicates that about 60000 to 70000 people in Iran suffer from MS [
2]. People with MS endure symptoms such as vision loss, movement disorder, incontinence, fatigue, discomfort, spasms, coordination problems, and cognitive impairment [
4]. Symptoms, diagnosis, prognosis, and treatment of MA are unpredictable, so it is associated with decreased psychosocial adjustment. Homayoni et al. [
7] underscored the role of coping strategies, social support, and leisure activities as facilitators of adaptation to MS and raising quality of life. Factors such as taking an active stance against the disease, accepting and managing one’s feelings, and focusing on the positive points facilitate adaptation to chronic illness [
8]. Conversely, Dennison et al. [
9] reported that perceived stress, emotion-oriented coping strategies, and uncertainty were associated with poor adaptation to MS and identified as barriers to adaptation.
Ghafari et al. [
10] reported that patients would conceal their illnesses due to their hatred of others’ pity, fear of rejection, and getting fired. On the other hand, Meek et al. [
11] considered disease denial and concealment as coping strategies to adapt to MS. Other factors related to poor adaptation in MS patients include employing emotion-oriented coping strategies, such as avoidance and wishful thinking and the reduction of using problem-solving strategies and seeking social support [
12].
Many studies on MS adaptation have been conducted quantitatively. So, in these studies, patients’ experiences regarding facilitators or barriers to adapting to the disease have been unexplored. Therefore, this study aims to address this gap and use qualitative research methods to investigate the facilitators and barriers to adaptation to MS in Iranian patients.
Materials and Methods
This qualitative study adopts a descriptive phenomenological approach. The participants included 14 patients with MS living in Tehran City, Iran. The researcher identified and selected them using purposive and convenience sampling from patients referring to Tehran’s Rafideh Hospital. To observe the selection of participants with maximum diversity, no limitations were considered regarding gender, marital and employment status, type of MS, and EDSS score In the inclusion criteria. The sample size was based on the theoretical saturation of the data. In this study, data saturation was achieved in the 14th interview.
Data rigor
To ensure the accuracy of the obtained data, they were validated based on the four criteria of Guba and Lincoln: Credibility, dependability, transferability, and conformability [
14].
Data collection
The interviews were conducted for 3 months, from February 20, 2022, to May 22, 2022. Data were collected using semi-structured interviews in convenient locations suggested by the participants. Interview questions were focused on adaptation experiences. The interviews lasted from 30 to 60 minutes.
The method of analyzing interviews
The interviews were analyzed based on Colaizzi’s [
15] phenomenological method. This 7-step method extracts relevant concepts from participants’ lived experiences and organizes narrative data in phenomenological studies [
16]. The first step was to get a general sense of each described experience. The second stage delves into the text of the interviews. Significant and remarkable comments from the participants are extracted in the third stage of formulating phrases. In the fourth stage, the crucial parts of the participants’ comments are extracted, and specific concepts were ascribed to convey their significance. In the fifth step, related concepts are classified. The classified concepts are described and analyzed in more detail in the sixth step. The seventh step involves getting feedback from the participants about analyzing their experiences.
Results
The Mean±SD age of the participants was 37.23±11.34 years, and their Mean±SD duration of the disease from the time of diagnosis was 15±8.80 years. Six participants were men, and 8 were women.
Adaptability facilitators included 5 main classes and 18 subclasses. Adaptability barriers included 3 main classes and 8 subclasses.
Main facilitators
Adaptability facilitators comprised 5 main classes: Religious strategies, receiving emotional and professional support, searching for information about the disease, psychological strategies, and lifestyle.
Religious strategies
The first main facilitator was religious strategies with four subclasses: Communication with God, testing patients by God, engaging in traditional spiritual activities, and expressing thankfulness.
Communication with God
The participants perceived their diseases as a way to get closer to God and find peace. One patient said, “ MS transcended me. To the extent that I got close to God. God satiated me and took my hands. No one was with me except God” (Participant No. 6).
Testing patients by God
The participants believed they were tested with MS to receive God’s mercy. One participant expressed, “the reason God gave me the disease is because He loves me. This is not a disease; it is a gift from God. I have to pass this divine test successfully” (Participant No. 11).
Performing traditional spiritual activities
To cope with MS, the participants engage in religious activities. They pray, visit shrines and holy places (Imam Reza and Imam Hussain), fast, recite the Qur’an, and make vows. Participant 8 described his experience: “After the first attack of MS, my father and I went to Mashhad. I slept next to Imam Reza’s shrine. I have not had a severe attack of MS since that day; Imam Reza helped me.”
Expressing thankfulness
The participants were thankful because God gave them more opportunities to manage their lives. “Thank God, when I compare my illness with other illnesses, I thank God a hundred times” (Participant No. 4).
Receiving emotional and professional support
The second main facilitator is emotional and professional support with three subclasses: Family, friends, and health system.
Support by family
The participants placed special importance on the support of their families. “I am lucky that my husband supports me regardless of my circumstances” (Participant No. 3).
Support by friends
Support from friends was mentioned as a crucial factor in coping with the disease. “I was very happy when my friends came to see me. Their presence encouraged me; I feel relaxed by being with them” (Participant No. 1).
Support by doctors and trust in the health system
Participants discussed the crucial role of the consultants in reducing their psychological pain. “The doctor’s encounter is very effective. It helps a lot to spend time talking to the patient” (Participant No. 2).
Searching for information about the disease
The third main facilitator revolved around searching for information about the disease with two subclasses: Searching for information through the Internet and books and receiving and sharing other patients’ information.
Searching for information through the internet and books
Searching for information is a way to understand MS better. One patient shared, “through my MS friends and their experiences, I prepared and read the books of My Journey with MS and the Wahls Protocol book for the recovery of MS patients” (Participant No. 3).
Receiving and sharing other patients’ information
Benefiting from the experiences of others, as well as sharing one’s own experience with newly diagnosed patients, were crucial factors in the initial adjustment to MS. One participant revealed, “my brother’s friend got MS 5 years before me; he helped me a lot when I talked to him” (Participant No. 12).
Psychological strategies
The fourth main facilitator was psychological strategies with six subclasses: Avoidance, distractions, problem-solving, acceptance, positive reassessment, and perseverance.
Avoidance
Some participants preferred to forget about their diagnosis and condition after knowing the diagnosis and status of their diseases. One patient said, “I’m not interested in knowing what this disease is, and I do not worry too much about it, and I try not to think about it. I even forget the dates of tests and MRI on purpose” (Participant No. 13).
Distractions
Some participants engaged in activities in writing and reading poetry, weaving carpets, watching movies, listening to music, and communicating with friends to distract themselves from their illnesses. One participant said, “I am alone at home. I make myself busy cooking time-consuming dishes to forget about my illness.”
Problem-solving
Participants described how they accepted the loss of their former abilities and coped with MS by finding new ways and interests. One participant explained, “I did not sit and regret. I continued and looked for the source of the problem to solve it” (Participant No. 10).
Acceptance
Some participants preferred to accept MS as a normal part of life instead of denying and fighting the disease. A patient said, “At the beginning of the disease, you think you can beat MS, but as it progresses, you realize that you can’t actually cure it, and you accept that the disease is always with you” (Participant No. 12).
Positive reassessment
The participants tried to change their negative thoughts to think to a more positive perspective. One participant said, “The disease is indeed a negative situation, but many positive things exist in my life. I have a supportive family, my wife loves me, we travel, we laugh” (Participant No. 4).
Perseverance
Several participants exhibited resilience when facing challenges, and it was easier for them to adapt. One participant said, “you should not succumb to MS. If you give up, you lose. Along with medicines and facilities, you have to fight it. Do all the prescriptions. If you don’t try to get better, it will hold you down” (Participant No. 11).
Lifestyle
The fifth main facilitator was lifestyle, with three subclasses: Exercise and physical activity, dietary compliance, and adequate sleep and rest.
Exercise and physical activity
Performing recommended exercises, such as Pilates, yoga, and physical therapy, slows the disease process. A participant conveyed, “doing physiotherapy and exercise is very effective in slowing down the progress of the disease, and you should do it continuously. You should not let the muscle sleep. You have to work your muscles” (Participant No. 13).
Dietary compliance
Most participants considered eating hot food and avoiding cold food as a way to adapt better. One patient said, “we should not eat cold food. If we eat fish, we will feel very bad. Tuna is much worse” (Participant No. 14).
Adequate sleep and rest
The participants considered web surfing or activity on social networks at the end of the night as one of the factors disturbing their mental state. A participant shared, “if I don’t rest during the day or if I don’t sleep for 1 hour in the afternoon, I get very tired. If I work on the phone a lot at night and stay up late, I won’t be in a good mood the next day” (Participant No. 3).
Adaptability facilitators included 5 main classes and 18 subclasses. Adaptability barriers included 3 main classes and 8 subclasses.
Main barriers
Adaptability Barriers comprised 3 main classes: Health system, communication with the individuals, and stigma of the disease and its concealment.
Health system
The first main barrier was related to the health system with three subclasses: Inadequate support from the treatment system, challenges in communicating the treatment system, and difficulty accessing treatment due to financial constraints.
Inadequate support from the treatment system
Patients lacking familial and community support expressed frustration with the health system regarding psychological or physical support. One patient said, “I live in an area where the doctor comes to the treatment center once a week. I often do not have access to a nearby treatment center when an MS attack occurs” (Participant No. 13).
Challenges in communicating with treatment staff
Inappropriate behavior of the medical staff, especially in the early stages of the disease, when patients require explanations from the doctor, increases the sensitivity of this issue. Participant 11 said, “when I want to ask questions to know more about my disease, the doctor talks before me and says you have no problem, you can go.”
Difficulty accessing treatment due to financial constraints
Not only the follow-up process and MS tests are expensive, but even if the drugs are covered by insurance, the costs are so high that some patients refuse to buy the prescription. One participant said, “now we can’t get medicine even with insurance; the cost of my medicine is 9 million tomans per month; it’s been about three months since I did not get medicine” (Participant No. 7).
Communication with the individuals
The second main barrier was related to the communication with the individuals with three subclasses: Fear of the future and disability, using non-scientific treatments, and disgust with pity.
Fear of the future and inability
The fear of becoming weak or disabled and uncertainty about the future play a crucial role in disrupting the mental coherence of the patients. One patient expressed concern, stating, “I just got married, and I don’t know what my husband is thinking. What should I do if I sit in a wheelchair?” (Participant No. 10).
Using non-scientific treatments
Some patients were enticed by non-governmental and profit-seeking individuals and institutions to do some non-scientific activities, such as bee therapy or cupping. One participant revealed, “I did bee therapy after my friends who were not MS patients insisted. The bees stung, and it just hurt” (Participant No. 6).
Disgust with pity
Some participants believed that society has a negative view of any disabled person, and this issue causes the patient not to be present in society. One participant said, "I know when people stare at me, they don't have a bad intention, and they feel sorry for me, but I don't want this sympathy. That's why I prefer to stay in my house and shop" (Participant No. 9).
Stigma of the disease and its concealment
The third main barrier was the society’s relations with two subclasses: Fear of being labeled and lack of recognition of the disease.
Fear of being labeled and judged
The fear of being labeled and judged forced patients to hide their illnesses from others. One participant said, “I am a teacher, and I have to hide my illnesses from the principal and the rest of my colleagues at school. If they know That I have MS, they will stigmatize me as disabled” (Participant No. 8).
Lack of recognition of the disease and people’s reaction
Because people do not know about MS disease, they are eager to ask questions from patients to learn more about it during the first visit. One participant explained, “I don’t use a walker when I go out on the street so that people don’t ask why I use a walker because I know that women in the park will ask me why I use a walker” (Participant No. 5).
Discussion
This study was conducted to discover the facilitators and barriers of adaptation in patients with MS. This study shows that spiritual beliefs, such as believing in God’s help and performing religious activities, such as praying, pilgrimage, and thanksgiving, are vital in maintaining hope and adaptation of MS patients. In a study by Joulaee et al. [
18] conducted on living with cancer in Iranian society, the religious approach was also reported as crucial to adapting to this disease. Pargament also believed that “invoking intercession,” both as an active and passive method, could be valuable in uncontrollable situations. Getting help from God in events beyond one’s control can reduce despair [
19].
The participants’ experiences showed that family, friends, and therapy groups support a person to overcome problems during critical times. In Homayoni’s study [
7], social support was reported as one of the sources facilitating the quality of life. Previous research has shown that understanding social support can prevent the adverse physiological effects of the disease and increase the level of self-care and self-confidence [
20]. In our research, patients were initially turned to reading books and searching the Internet for information to adapt to their disease. This result was consistent with the study of Pretorius and Joubert [
21] and Elkhalii-McNulty et al [
17]. Their study participants reduced their frustrations and found answers to their questions by searching on the Internet, reading books, and asking questions from patients diagnosed with MS. Knowledge and information about MS can also play a crucial role in modifying the fear associated with this condition. After receiving the diagnosis, sufficient information can help people with MS to harness more effective coping styles, such as planning and seeking social support. On the other hand, the participants who felt dissatisfied with their doctor’s information tended to use less effective coping styles, such as avoidance and denial [
22].
According to the literature, patients tend to adopt avoidance strategies and rely less on positive attitude strategies that provide better psychosocial adaptation to MS-related problems [
23]. Problem-oriented coping styles positively and emotion-oriented coping styles negatively predict psychological adjustment in patients with MS [
24]. Problem-oriented strategies focus on changing the stressful situation, while emotion-oriented strategies emphasize restraining emotional responses and physiological arousal to reduce psychological pressures [
25]. Patients who cope with the stress and pressures of the disease based on problem-oriented strategies tend to evaluate this stressful clinical situation. The participants in the research discussed the importance of physical activity, proper diet, and adequate sleep in adapting to the disease. This finding has also been confirmed in other studies. According to Molt et al.’s study [
26], worsening MS symptoms is closely associated with low physical activity. It is recommended to hold classes with counseling and educational content for patients and their families. These classes provide information related to MS disease, appropriate diet, and complementary treatment methods to improve the physical and mental condition of MS patients.
One of the crucial issues for MS patients was the cost of medicines. Other studies in Iran also reported that MS is a costly disease with a high economic burden on society [
27, 28]. Although insurance can reduce the economic burden of this disease to some extent by properly covering drug costs, some participants were not satisfied with the communication of the treatment staff and giving information to the patients. Providing information to patients, allowing them to participate in decision-making, and respecting their rights help them recover. Based on the results of Khaftan et al.’s research [
29], the participants were dissatisfied with the trivialization of the disease by the doctors, followed by a superficial response to the patient and a lack of empathy and sufficient attention. Respecting patients’ rights is an inseparable part of providing healthcare services and should be formulated, notified, implemented, and complied with [
30]. The charter of patient rights states that patients have the right to receive respectful care. The patient is entitled to ask the doctors and other people who directly care for him for detailed information about the diagnosis, type of treatment, and disease prognosis [
29].
According to this research, non-adherence to doctors’ recommendations led to incorrect self-treatment measures, such as bee therapy. According to Kelly and Turner [
31], empathy with patients may also improve the medical treatment process; when patients feel that doctors understand them, they are more likely to follow their treatment recommendations.
Social and cultural misconceptions that can be caused by inadequate information about the disease were also among the annoying things of the patients participating in this research, which is consistent with the study conducted by Borreani et al. [
32]. Kalantari et al. [
33] also reported that 52.6% of MS patients believed that MS causes stigma in our society and 44% of patients preferred to conceal their disease from others. Pérez-Miralles et al. [
34] also reported in a study that the stigma of MS weakens patients’ quality of life and mood.
This study had some limitations. It was conducted only in one center without access to patients in other centers, which may affect the generalization of the results. In future studies, the experiences and adaptation based on different types of MS should also be explored. Clinically, it is suggested that specialists and therapists design interventions and even adaptation tools for this population based on the experiences gained.
Conclusion
It is essential to increase understanding of the needs of people adapting to MS, so rehabilitation personnel can provide clinical and cost-effective support by understanding the needs of these patients.
Identifying the primary needs during adaptation can, in turn, help on designing of suitable intervention.
Insights gained from patients' personal experiences also provide health personnel with a valuable understanding of how to manage and cope with the effects of illness in everyday life. It is also suggested to educate the general public through mass media, associations, and educational centers to increase awareness in society about this disease and remove common misconceptions.
Ethical Considerations
Compliance with ethical guidelines
This study was approved by the Ethics Committee of the University of Social Welfare and Rehabilitation Sciences (Code: IR.USWR.REC.1400.330).
Funding
This article was extracted from the PhD dissertation of Shafiq Mehraban approved by the Department of Counseling, Faculty of Behavioral Sciences, University of Social Welfare and Rehabilitation Sciences.
Authors' contributions
Conceptualization, methodology, and validation: Bahman Bahmani, Shafiq Mehraban and Mohammad Saeed Khanjani; Analyze and review, visualization, supervision, project management, financing, writing the paper: All authors.
Conflict of interest
The authors declared no conflict of interest.
Acknowledgments
The authors would like to thank all the patients who participated in this research and the entire staff of Rafideh Hospital.
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