Понимание иранскими пациентами, страдающими множественным склерозом, источников поддержки, необходимых для корректировки: качественный анализ содержания.

Introduction

As the most common autoimmune demyelinating disease of the central nervous system, multiple sclerosis (MS) has been introduced as a disabling and incurable health condition. It is also more prevalent in women aged 20–40 and often reported in high-income nations.[ 1 ] The prevalence rate of MS is 29.3 per 100000 people in Iran, with an ascending trend.[ 2 ] So it ranks first in the Middle East and the prevalence rate there is up to 20 times higher than that in other states in the region.[ 3 ] This disease triggers an extensive range of physical complications and psychological changes, such as visual and motor disorders, balance problems, sphincter dysfunctions, spasticity, pain and fatigue, anxiety, depression, and even low self-esteem, which can have a profound impact on the life aspects and deprive the sufferers of a sense of competence and self-confidence.[ 1 ]

In the early stages of the disease, the symptoms can be mild and intermittent but can progress, and the increasing disabilities might occur after some time; subsequently, there are new limitations facing such patients that almost necessitate support.[ 4 ] In view of this, social support has been introduced as the most important source, a broad term that contains all the sources that individuals may find in the social context of life, including family, occupation (i.e., being employed versus being without a job), and personal relationships (friends and neighbors). Accordingly, the MS patients’ perceptions of social support can shape the adjustment process after being affected.[ 5 ]

Research on MS also confirms the positive effects of social support on various mental health conditions, such as anxiety or depression.[ 6 ] According to Rommer et al . (2017),[ 7 ] patients’ needs for social support always multiply as MS progresses. Moreover, social functioning might decline, and there are even social cognitive dysfunctions to understand others’ emotions.[ 8 ] A meta-analysis had similarly revealed that the difficulties in perceiving emotions during the disease could make the sufferers not to receive sufficient support from others. Therefore, they need to attend various programs and identify other social sources to boost their ability to deal effectively with such problems.[ 9 ]

In this respect, Abolhassani et al . (2015)[ 10 ] had distinguished five types of needs in MS patients, including recovery, need for comfort, awareness, economic well-being, and social security. Cross et al . (2019)[ 11 ] had correspondingly demonstrated that the families of children living with MS had experienced stress due to diagnostic uncertainty, anxiety induced by the disease symptoms and its possible progression, frustration with the uncertain effects of correction therapies, and injection issues. Most parents had also reported receiving support from physicians, the National MS Society, and the MS community. Lonergan et al . (2015)[ 12 ] had found that MS patients had spotted medical treatment, socio-environmental agents, advanced care delivery, information provision, rehabilitation services, non-professional care, and psychological support as the most vital needs they expected to be met. Accordingly, the higher the disease severity, the more the sufferers demanded socio-environmental support, rehabilitation services, and even non-professional care, and those with mild disease might thus crave for more information.

These studies are among some examples of extensive research on patients with MS,[ 13 , 14 , 15 , 16 ] which have merely reflected on the type or extent of the needs, but the support provided and received to meet such needs and the way the sufferers themselves perceive and experience this support, especially in Iran, have been neglected. In this regard, providing care and support by caregivers is not often the same as receiving it by the patients.[ 13 , 17 ] This point has been further recognized by the nursing theorist, Jane Watson (2011),[ 18 ] as the difference between actual and perceived care. In this sense, she believed that care would be provided and transpersonal care would be realized if these two concepts, that is, care and support, go well together.

Against this background, conducting a qualitative study and understanding patients’ lived experiences of sources of support, as an increasingly strong evidence for research and person-centered healthcare, can help address some concerns as well as the potential impacts of sources of support on the patients’ conditions and then their adjustment to MS. To this end, this study aimed to explore MS patients’ perceptions and experiences about the sources of support to reach.

Material and Methods

Study design and setting

The study employed qualitative research, specifically, a conventional content analysis design, to describe MS patients’ perceived experiences of support resources. Content analysis is a good procedure to obtain valid and reliable results from the textual data here to build knowledge, raise new insights, provide facts, and handle performance.[ 19 ]

The study participants consisted of patients living with MS, referred to the MS Outpatient Clinic affiliated to BouAli Referral Hospital, in Mazandaran Province, northern Iran. For the study, 16 participants, including 13 patients and 3 caregivers (a physician, a nurse, and a patient companion), were recruited.

Study participants and sampling

Participants were selected and interviewed by purposive and theoretical sampling from the native patients admitted to the MS Outpatient Clinic, with at least 6 months of definitive diagnosis of MS, having rich lived experiences and the ability to talk with the researcher and convey their experiences. The sufferers who were reluctant to cooperate or had an underlying disease, but MS, were excluded. There were even further attempts to select the participants with maximum variation in terms of age as well as illness duration and severity. Upon interviewing 11 participants in this study, data saturation was reached, and the first categories were established. In spite of this, two more interviews were conducted to be more certain, but no novel data were added, leading to the formation of other categories. The participants’ characteristics are given in Table 1 .

Table 1 Participants’ characteristics Participant ID Gender Age (years) Illness duration (years) Marital status Level of education Number of children P1 Male 47 17 Married Diploma 2 P2 Female 25 6 Married Diploma 1 P3 Female 41 5 Married Diploma 2 P4 Female 28 2 Divorced Diploma 1 P5 Male 27 3 Single Diploma – P6 Male 31 9 Married Middle school 1 P7 Female 27 6 Married Bachelor’s degree – P8 Female 36 10 Married Bachelor’s degree – P9 Male 30 11 Divorced Diploma – P10 Female 36 16 Single Diploma – P11 Female 39 7 Divorced Bachelor’s degree 1 P12 Male 29 11 Married Diploma – P13 Female 43 – Married Nurse 2 P14 Male 56 – Married Physician 2 P15 Female 43 9 Divorced Bachelor’s degree 1 P16 Female 63 – Married Patient companion (Bachelor’s degree) 3

Participants’ characteristics

Data collection

Semi-structured, in-depth, face-to-face interviews, lasting 25–110 minutes, were conducted for data collection, which was launched in October 2020 and completed in March 2022. All the interviews were conducted by the first author and were audio-taped upon the participants’ permission. The interviews continued until necessary in-depth data were obtained. In three cases, the researcher visited the participants for the second time for further exploration. Most of the interviews were performed in a quiet room in the MS Outpatient Clinic, except for one managed in the National MS Society office in the city of Sari, Iran. Before each interview, the research objectives and the reasons for recording the interviews were elucidated. At the onset of each interview, the participants were further asked to provide a brief introduction and their personal information, including age, gender, level of education, marital status, illness duration, and number of children, which were recorded. Then, some open-ended questions were raised, and subsequently, questions related to the phenomenon concerned were asked. The inquiry into the participants’ experiences regarding the use of sources of support continued under the researcher’s guidance. Examples of the questions about the phenomenon were “What problems have thus far arisen in your life following this disease?,” “Who helped you solve these problems?,” and “Please explain how you feel about this support.” The researcher also attempted to clarify the participants’ answers by some probing questions and statements, such as “Can you explain more?,” “What do you mean?,” and “Give an example if possible.” Of note, the interviews continued until the researcher made sure that the concepts had been well understood.

Data analysis

Data were analyzed using the Graneheim and Lundman (2004)[ 20 ] qualitative content analysis method. This approach proposes systematic steps for a conventional qualitative content analysis. In the first step, the interviews were immediately transcribed verbatim and then used as the main data. During the second step, the audio-taped interviews were played several times, the transcriptions were reviewed more than once, and the texts were divided into semantic units. In the third step, the semantic units reached the conceptual level and were labeled according to their hidden concepts. As the fourth step, the code differences and relationships, suggesting a single subject, were placed in one category based on continuous comparison of their similarities, and then the subcategories and categories emerged. Some confusing codes were further examined in addition to being checked by the participants in the ensuing interviews. For this purpose, the incomprehensible points were removed and then the place of the codes in each category was determined. During the fifth step, namely, the interpretation of the categories, the main concept in each category was identified and the themes were reviewed according to the entire data. The MAXQDA 2018 software was used for data analysis and management.

Trustworthiness

The trustworthiness of the study was assessed using Lincoln and Guba’s criteria (1986), including credibility, dependability, confirmability, and transferability.[ 21 ] Long-term engagement with participants, triangulation, and member check were accordingly employed to augment the credibility of the findings. To ensure their dependability, a number of qualitative research colleagues alongside the researchers were invited to review the data to assess the accuracy of the analysis. In addition, exploiting their search design, recording the interviews, and transcribing them helped make the data more dependable. Moreover, the researchers ensured the research validity by maintaining the documents at all stages. The researchers’ interest in this phenomenon, continuous engagement with the data, some reviews by observers and qualitative research experts, search for contradictory evidence and articles as well as obtaining others’ opinions in this field were among the factors substantiating the study confirmability. The report was further completed with expert guidance and supervision, making both dependability and confirmability possible. In this study, purposive sampling was even practiced to boost data transferability, and the interviews were conducted with different participants to observe maximum variation. Moreover, preparing direct quotes from the participants provided the grounds for others to judge and evaluate the transferability of the study findings.

Ethical considerations

This study was approved by the Ethics Committee of Semnan University of Medical Sciences, Semnan, Iran (ethics code: IR.SEMUMS.REC.1399.097). The participants received some explanations about their voluntary contribution, data confidentiality, and anonymity and were even allowed to withdraw from the study at any time they wished. An informed consent form was signed to participate in the study.

Results

Data analysis led to the emergence of one main category and six subcategories. Receiving insufficient support was identified as a main category and the six subcategories that revealed the patients’ perceptions about sources of support included “family companionship,” “the relative companionship of the spouse,” “partial satisfaction with medical staff,” “inattention and partial satisfaction with the National MS Society,” “peers with empathic understanding,” and “friends’ companionship.” Table 2 presents an example of the interview coding process and data classification.

Table 2 An example of the interview coding process and data classification Semantic unit Primary code Subcategory Main category (theme) My mother was always with me and her behavior toward me did not change at all Mother assisting the patient Family companionship Receiving insufficient support There is no need to ask anyone for help if you can do it yourself. But now I have to ask my husband’s permission to do even the smallest things, otherwise he will get angry Becoming dependent on the husband’s consent in the smallest matters of life Relative companionship of the spouse I wanted my physician to talk to me and communicate with me, but it seems that he only visited with his residents and left Physicians’ poor communication with patient Partial satisfaction with medical staff The MS Society should support us more. Previous years were much better. They used to give us food once in a while, but now they don’t give us anything; they say we don’t have the budget Dissatisfaction with the support function of the MS Society Inattention and partial satisfaction with the National MS Society I made friends with two people here who have a very high spirit. We are in touch with each other and we calm each other down a lot Positive influence and emotional support of peers Peers with empathic understanding My friends are very kind; even though I was not feeling well, they would take me out to change my mood The positive effect of friends on the patient’s mood Friends’ companionship

An example of the interview coding process and data classification

Family companionship

Among the sources of support, the MS patients had received much support from their family members, especially the ones who were still single or had separated from their partners for any reasons. According to this, family was the first stronghold in which the sufferers could easily find support, with no reproaches. They further stated that full support by the family had made them empowered to adjust with the MS diagnosis as well as the associated physical and functional conditions.

“ My family used to ask me to control myself and not to view the illness too critically. Here and now, everyone is giving me a hand; I mean my parents, my siblings, and all those around. My mother is at hand to help me, even when I need to take a shower .” (p9)

Owing to the volatile conditions of the disease, the presence of family members and their full support in all circumstances had also encouraged the MS patients not to feel lonely to reach adjustment more easily.

“ I always repeat that it is very important to go with your companion hand in hand. If you do not feel so, you definitely lose, and even fail to walk. You might not get better, but get worse all at once .” (p8)

Contrary to the full support delivered by families, some MS patients had experienced inadequate support. Most of the sufferers’ dissatisfaction was associated with the sense of not being understood by those around (especially family members and other relatives). They had been further charged with factitious disorder, indoctrination, and unrealistic symptoms by their family, because many of the physical conditions, feelings, and experiences challenging the MS patients were not visible to those around, and only the mobility impairments could be seen by their family members, which could help in better understanding and acceptance. Emotions, such as boredom, asthenia, numbness, and even leg pain could be thus overlooked by those around because they were not observable.

“ My family tells me that it is mere self-indoctrination. That is why I prefer to speak no word at all. Some people do not understand what I mean. They just say it is another disease! Then again, it really hurts because I am always in pain .” (p15)

The relative companionship of the spouse

Although a partner was a family member, some married patients, particularly women, had a special feeling and experience of their support. The partner (husband or wife) could accordingly play a significant role in encouraging the MS patients to carry on and fight against this health condition by removing the life burden, assisting more in house chores, providing care for children, and giving even emotional and psychological support.

“ When I was experiencing an MS attack, I was feeling just like having a spinal cord injury. My wife was treating me like a nurse, so I had no problems .” (p1)

In addition to the physical and emotional aspects, the partner’s attention to the patient’s psychological and emotional issues and their awareness of the need to spend time with an MS sufferer could thus help them not to think about the disease and its consequent problems, but feel at ease.

“ My husband and I go out every minute, he also suggests visiting someone’s house, to change my mood and make me to be in high spirits. We often go to the forest on weekends. He is also very obsessed with keeping me on track with my medications, or something he knows I begrudge. He always advises me to forget about it .” (p7)

In response to such experiences, some MS sufferers had been subjected to inadequate support and abusive behaviors, and even inappropriate treatment from their partners, which had ended in their separation.

“ My disloyal husband let me down, and I think it was better that he left, because he was teasing me with his hurtful words, abusive, and sense of disdain .” (p12)

Partial satisfaction with medical staff

Another source of support, primarily responsible for curing the patients, was the treating physician. In this respect, the interactions with the treating physicians could be evaluated in two areas. One was related to the physician’s therapeutic experiences in terms of timely diagnosis and treatment, in which most participants were satisfied with, although some cases of discontent were observed. The next was how the physicians were treating the patients, spending time with them, and valuing them as human beings and integrated wholes. Unfortunately, nearly all MS patients were feeling dissatisfied in this area, and approval was only observed in rare cases.

“ Thanks goodness! The physicians diagnosed my condition right away. My ophthalmologist was also experienced enough and diagnosed it with no delay. If the diagnosis took longer, many adverse events would come about, and it would not work anymore .” (p2)

Another patient also raised the issue of trust between physicians and patients, and even its effect on timely diagnosis and treatment by the treating physician.

“ My treating physician, Mr XXX, behaves very well. I mean he trusts the patients. For example, once a time it happened to me, and there was a quick treatment regimen prescribed based on the information he had about me since he knew that I presented the symptom and I had experienced it. Besides, I was not kidding. He started, and this rapid treatment after the attack was very effective in reversing it and mitigating the symptoms .” (p12)

The main point for the sufferers was to communicate as it should be with the physicians, but some patients stated that they could not exchange a few words with their treating physicians and were even afraid to ask their questions. In many cases, the sufferers also requested the physicians to give them enough time and attention so that they could easily raise their questions and talk about their concerns with no fear of reactions, making them feel frustrated.

“ Patients are always in need of physicians’ attention, if it does not occur, they may face a complication, and then become anxious. A quick-tempered person may fight with oneself, for example, thinking about one’s health condition, being annoyed everywhere, going and seeing the physician, and being treated. Then, the patient comes and agonizes oneself, they cannot do anything else, they even fail to do it and share something with the treating physician .” (p5)

Nurses were another source of support used by the MS sufferers. The participants had referred to the MS Outpatient Clinic to inject intravenous drugs, such as interferon, get medications, have their blood tested, and even receive counseling and guidance. It was also possible to visit the patients once a week free of charge. The mobile phone number of the nurse in charge of the clinic was further available to all patients, and there was a channel to ask questions in case of side effects or any problems with injecting the medications at home. All the MS patients were feeling satisfied with the services provided in the clinic, and the most important reason for their satisfaction was the way the nurse had welcomed their questions openly.

“ Ms. XXX is fantastic. I always feel very relaxed here. If we have a question, we can ask it or send a message, and she immediately answers and helps .” (p11)

The MS patients also stated that it was possible to talk with the nurse about the feelings and concerns crossing their minds during the interactions and then feel at ease following her explanations and guidance. The nurse working in the MS Outpatient Clinic was making much effort to provide maximum comfort to the sufferers despite the limited facilities there.

“ The night before I was admitted to this hospital for an injection, I did not feel anxious because I knew I could see Ms. XXX tomorrow, she always covers my back and encourages me .” (p3)

Inattention and partial satisfaction with the national MS society

Many patients were further interacting variably with the National MS Society. The most common reason for no interactions in this regard was the participants’ dissatisfaction with the services provided and the fact that the patients expected to receive much more support. Due to their illness, they were also demanding financial support.

“ They do not provide financial support, but they give a basket of goods twice a year, and we go camping once a year, but now we have never gone camping for two years due to the COVID-19 outbreak. The society office is also running with donations. They always say that there are many patients and the donations have dropped .” (p15)

Hiding the disease from others was another factor, making the sufferers have less interaction with the National MS Society. As they were concerned that having MS alone would negatively affect their future work and life, they had preferred not to register with the National MS Society, but remain anonymous. Since receiving services in Iran was bound by registration and then membership in the National MS Society, some problems might occur when choosing a job or getting married.

“ When I was single, I did not go to the society office because I did not like my name to be there. I was worried about my marriage. Others were not allowed to understand that I was one of the MS patients. After being married, I asked my husband to register my name there because my medications cost a fortune .” (p7)

Peers with empathic understanding

The patients, especially the newly diagnosed ones, tended to know about the disease and gain more information, so they were looking for an informal and experienced source. Talking with an informed patient could thus help them much, and this was worth considering. The first point was that most sufferers liked to talk with positive and high-spirited counterparts because they believed that frustrated and negative individuals would send negative energy and a sense of despair to them, while, in high spirits, people could have a positive effect on them, instilling a sense of peace and giving them the power to fight.

“ I created a group on WhatsApp Messenger with two of my friends who were also suffering from MS, but had a very high morale. We promised from the very beginning that there was no place for sighs and moans in the group, we were in pain together, and if something bad happened in life we could share it, and soothe each other .” (p8)

The patients, seeing the difficult conditions of life with the disease in their peers and friends, could thus feel hopeful and realize that there were people with far more difficult conditions who were moving hopefully toward the future despite all the difficulties, so they could feel more motivated.

“ One of my intimate friends is experiencing this disease. When I see his problems, I feel very hopeful. He always gives me many pieces of advice, saying that I am the happiest person in the world, and appreciates me .” (p7)

The second point in relation to peers was their reluctance to communicate with others. These participants were feeling that having conversations with others and hearing their experiences and concerns would make them feel negative about the disease, and in fact its future. Accordingly, they had refused to talk with their peers and receive their support. These participants stated that their condition had even deteriorated by attending the MS Outpatient Clinic and seeing patients with mobility impairments, so they did not wish to join any MS-related courses along with their peers. These conditions were more common in the sufferers in the early stages of the disease, who had not been subjected to severe conditions, so they were terrified.

“ I hate to talk with them. I do not plan to compare my situation with them. For example, the society office in our city always invites me, but I do not go. I cannot stand being there. It makes my condition worse .” (p2)

Friends’ companionship

Having the support of friends was another source that could improve mental conditions in the MS patients. They accordingly wanted no change in the behavior of their friends and relatives after the onset of the disease; otherwise, it meant that a very big change had occurred in their lives following this health condition, and then everything was going to be affected, while the patient’s heart felt desires were not like this.

“ The most effective support was that my friends did not change their behavior toward me, that is, there was no unfounded pity, and they did exactly the same stupid behaviors and told the same jokes we had always heard. Although I had balance problems, they were telling bad jokes, making me cringe and feel better. I felt that not much had changed .” (p12)

Discussion

The study findings showed that the MS patients had different perceptions and experiences about the sources of support, including “family companionship,” “the relative companionship of the spouse,” “partial satisfaction with medical staff,” “inattention and partial satisfaction with the National MS Society,” “peers with empathic understanding,” and “friends’ companionship.” The sufferers were also seeking support from all sources, but receiving them had not met their expectations and needs. The study results revealed that none of these sources of support had been perceived as absolutely positive and expected, and in some cases, negative perceptions and feelings had been identified, establishing that the patients’ endowment with these sources of support was relative.

Family companionship and the relative companionship of the spouse were among the main sources of support introduced here. In Dehghani’s study, it had been further revealed that most support and care for the MS patients had been provided by family caregivers and partners, and the rest had been delivered by friends and the community.[ 22 ] According to Pourhosein, familial and social support would reduce patients’ stress, enabling them to cope with their problems more easily and improve their physical and mental well-being.[ 23 ] Another study had also reported that, despite the difficulties imposed on family members in caring for these sufferers, most had found the disease as a factor making them closer together to feel more empathetic. In this sense, the possibilities that everything could change at any moment had inspired them to value and even prioritize family relationships.[ 11 ]

These perceptions were somewhat different with regard to receiving support from one’s partner, although the kindness and sacrifice of the wife was not as much as the family members. In this line, Tabuteau-Harrison et al .[ 24 ] had indicated that the development of disabilities had a profound impact on marital life, in a way that frustration and despair on both sides over time could lead to separation. The relative importance of partner support in this study seemed to be attributed to the fact that MS was chronic in nature and patient companions would become fed up with hearing patients’ complaints after a while, so everything would be normal. In addition, the bulk of symptoms and feelings of the sufferers would not be understood by family members or partners, and their demonstration was sometimes considered abusive. Unfortunately, Iranians are not much aware of this disease, and no effective measures have thus far been taken to raise public awareness about this health condition even with its growing prevalence rate. Moreover, there are no centers to provide in-home and social services to such patients, facilitate the provision of care for families, or improve care delivery by them in Iran, while many studies have reported that non-professional care mainly includes community-based services, such as in-home care, which is often available to meet the everyday life needs of such patients.[ 12 , 16 , 17 ]

The MS patients’ perceptions about interactions with their treating physicians were also very challenging because they expected to receive full support in this regard, more than other sources, to follow their instructions to get rid of the disease, but such expectations had not always been met. In this sense, Topcu et al .[ 25 ] had concluded that the participants had to get their diagnosis often with insufficient physician support, so they were obliged to gain information and meet this need. The MS sufferers also stated that giving hope and using encouraging words by physicians could make them feel high-spirited and even less worried about the future of their disease. Nevertheless, physicians would prefer to focus solely on treating the disease and not pay attention to other problems in most cases, due to their busy schedule, recurrent daily visits, and knowing that these patients having cognitive problems following MS might become anxious and constantly complain. Some barriers to effective physician–patient communication include patient anxiety and fear, physical or verbal abuse by physicians, unrealistic patient expectations, and physician workload.[ 26 ]

In the present study, some experiences were further clarified, that is, the physicians had not devoted enough time to the sufferers or had not explained the disease to do away with the ambiguities, but had simply written prescriptions to relieve the symptoms, which had frustrated the patients, which is in line with Ytterberg’s findings.[ 16 ] According to Dunn et al .[ 27 ], healthcare providers might face some challenges in providing guidance or implementing interventions, including limited time to deal with everything in a visit. There seemed to be a significant gap between what healthcare providers might have shared with their patients and what their patients had really liked to hear. The sufferers often tended to talk with their physicians about the prognosis and disease-related measures required, while the primary focus during the short-term visits in the current healthcare environment was on remedial therapies, so there was no time to talk about health-promoting strategies and meet the patients’ expectations.

Nurses also had good opportunity to provide support due to the long time they could spend with patients.[ 28 ] In this study, the sufferers were highly satisfied with the compassionate responses of the nurse working in the MS Outpatient Clinic, who would tackle their problems round the clock and provide counseling to them and their companions with open arms and a smiling face. The patients also stated that the nurse’s behavior was very effective in creating mental stillness and peace of mind. Ytterberg had reiterated that MS sufferers had the highest levels of satisfaction with the nurses as care coordinators.[ 16 ]

The levels of satisfaction in the patients regarding the use of services provided by the National MS Society were also low due to their unhappiness with the support for this purpose. The patients expected the society office to act as a supporting organization, understand their problems, provide them with financial assistance and welfare services, and speak on their behalf in government assemblies. Of note, the National MS Society in Iran was not a state-run institution, receiving funds from the government to provide support services, but it was operating with the help of donors and its limited financial resources. On the word of the director of the National MS Society, they had removed a number of services from their programs that had been previously provided to the sufferers due to some financial constraints, and now they were mostly responsible for counseling. Because of such reasons, it was not possible to meet the patients’ expectations regarding receiving financial support from the society office. Dunn et al .[ 27 ] had also stated that the most common needs raised by the MS patients were having access to some sources to receive emotional and physical support, being referred to specialists with sufficient knowledge and expertise, and finding solutions to financially manage the disease.

One of the factors influencing the patients’ dissatisfaction with the National MS Society was poor provision of public welfare services. The sufferers also expected improvements in the public transportation services as well as the conditions of sidewalks for the disabled, which could often cause them to fall. Also, measures to reduce the cost of providing mobility aids should be considered. The patients further assumed that the National MS Society was responsible to keep track of such cases in supporting organizations. The society office in this study was successful in raising knowledge, answering questions, and providing educational booklets to familiarize the patients with this disease, so all were satisfied, which was in line with the study findings of Abolhassani.[ 10 ] Since the director of the National MS Society here was suffering from MS, he was attempting to resolve uncertainties in many cases by communicating his experiences and providing complete information to the sufferers and their families. These findings were in agreement with the reports by Cross et al .[ 11 ] They reveal that the patients’ perceptions about receiving services from the society office were different. Many sufferers were also benefiting from the information and financial support provided by the National MS Society, as an important source of support, and they were pleased to contact the society office and use their guidance once distress occurred. Communicating with peers and enjoying their support could also help them feel that they were not alone and there were others like them who could understand what they were saying. In contrast, some families had not much contact with the society office due to the lack of awareness or on purpose, or even finding it useless.[ 11 ]

The participants even cited friends’ companionship as another source of support during the MS adjustment process. They stated that friends could provide support by paying attention to the patients as they had before the illness, and not changing the interactions. In some cases, some friends could feel responsible and seek information to give them to get better. These findings were consistent with the results released by Ytterberg et al .,[ 16 ] indicating that friends would not let the patients down, and they would continue to support and care for them with the onset of chronic diseases. Another study showed a direct significant relationship between the scores of perceptions of support from friends and the total score of psychosocial adjustment.[ 29 ] Receiving attention from friends could thus prevent isolation, create the power and motivation to accept the disease, and raise the belief in the sufferers that they could confront the disease and adjust to new conditions by positive feeling and high self-esteem resulting from social relationships.[ 30 ]

Limitations

This was the first content analysis study in Iran into the sources of support among patients with MS in an area in the north of Iran with a high prevalence of MS. Another strength of the study was the approval of the findings by several participants as well as several patients with MS who were not among the participants. Despite these strengths, this study had some limitations. First, the researcher was a nurse, which prevented the patients from expressing some other aspects of their feelings to the nurses and physicians. Second, the findings may not easily be transferable to patients in other areas and countries.

Recommendations

According to the experiences of the participants of the present study regarding the relative nature of receiving sources of support, it is recommended to investigate the cause of the difference between the perception of patients and other available sources of support so that the defects that cause this difference are identified and eliminated. In addition, it is recommended to identify the relationship between some psychosocial variables of patients and their satisfaction with access to medical care services and sources of support. Considering that this study was conducted in Iranian patients, the study findings may not be transferable to patients in other countries; therefore, further studies in other sociocultural contexts are recommended to produce firmer evidence respecting the process of adjustment with MS.

Conclusion

The study findings showed that the patients’ perceptions of the sources of support during the adjustment process were significant in six subcategories, including “family companionship,” “the relative companionship of the spouse,” “partial satisfaction with medical staff,” “inattention and partial satisfaction with the National MS Society,” “peers with empathic understanding,” and “friends’ companionship.” However, the supporting role of the National MS Society in reaching adjustment was very little, and other sources might have some weaknesses that need to be strengthened. Accordingly, the healthcare authorities and policymakers in Iran are suggested to facilitate the conditions for such sufferers to achieve psychosocial adjustment as soon as possible and support these patients by taking effective steps based on the results of this study. The construction of a comprehensive clinic for these patients, providing all medical, educational, counseling, and physiotherapy services and the like at a reasonable cost, considering mobility restrictions, and not pressuring the sufferers to refer to different centers to receive these services, is thus of utmost importance. Definitely, insurance organizations are required to make such services more affordable for the patients.

Declaration of patient consent

The authors certify that appropriate patient consent forms were obtained from the participants. In the form, the patient(s) has/have given his/her/their consent for his/her/their clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity.

Conflicts of interest

There are no conflicts of interest.

Acknowledgements

This article was extracted from a PhD dissertation in nursing. Hereby, we are thankful to the participating patients and the staff of the MS clinic of BouAli Hospital, Sari, Iran.

Funding Statement

This study has been financially supported by the Deputy of Research and Technology, Semnan University of Medical Sciences, Semnan, Iran.

References