Introduction
Multiple sclerosis (MS) as a chronic progressive disease is the most common non-traumatic cause of neurological disability in young adults [1, 2]. Statistics estimate that more than 2.5 million people around the world live with this disease [3]. In Iran, its prevalence has been reported in about 60000 people [4]. Iran is among the top 10 countries in the world with the highest incidence of MS [5]. The patients with progressive MS may gradually experience a wide range of functional limitations [6, 7]. In the long run, the patients are not able to perform the daily living activities alone and need help from others; therefore, a family member (such as a spouse, parents or children) usually becomes their caregiver [8, 9]. Caregiving of a person with a chronic disease creates a lot of stress in the caregiver and families; the patient’s biological, social, and psychological needs take precedence, and caregivers become exhausted due to excessive pressures and demands [10]. The caregiving of MS patients is different from the caregiving of people with other chronic diseases, because the course of the disease is not clear and the caregiver cannot predict the occurrence, recurrence or functional ability of the patient during the day [11, 12]. Caregivers need support from family and society to be able to optimally perform their caregiving role; the lack of support has a negative impact on their physical, psychological and social health [3, 7, 13, 14]. The caregivers and families of MS patients believe that the medical team and therapists are sometimes unable to fully understand their demands and needs [15]. 
Studies in Iran have indicated the lack of social support resources for the families of MS patients. Most studies in the field of MS have focused on the patients; a few studies have been conducted on family caregivers of these patients and their needs. Most of the studies conducted on family caregivers of MS patients in other countries have demonstrated the different needs and challenges of these caregivers. It is essential to pay attention to the needs and problems of this group of caregivers in Iran with different cultural contexts. Recognizing these needs and challenges can be useful for proper planning to solve the problems of family caregivers in Iran. Therefore, this study aims to investigate the supportive needs of family caregivers of patients with MS in Iran (Table 2).


Materials and Methods 
This is a qualitative study using the contract content analysis conducted in MS Association of Isfahan, Iran. Participants were selected by a purposive sampling method. Semi-structured interviews were conducted with 8 patients, 13 family caregivers and 4 treatment staff (neurologist, nurse and psychologist). Inclusion criteria were willingness to participate in the study, age ≥18 years, ability to describe care experiences, family caregivers with a work experience of at least one year for a patient with MS, treatment staff with at least one year of work experience in departments related to MS patients, and patients having diagnosed MS for at least one year. The exclusion criteria were any physical or mental disorders in caregivers, inability to communicate, and lack of willingness or ability to continue participation. Maximum diversity in demographic information and caregiving experiences was considered in the selection of participants.
Study data were collected from September 2018 to April 2019 for eight months. Interviews took about 30-60 minutes. Each interview began with open-ended questions. For instance: “Please talk about your experience about needs and problems of caregiving”, or “What factors are involved in the needs and problems of caregiving?”. In cases of the need for more specialized interviews, follow-up questions were asked, such as: “Can you give an example”, or “What do you think about this case?”. All interviews were conducted in a quiet and private environment selected by the participants (MS Association, participants’ home, or workplace). They were simultaneously transcribed, and then coded and analyzed several times. The research process was based on an inductive reasoning approach, and sampling and data collection were saturated after 25 interviews.
The data were analyzed by the contract content analysis according to Graneheim and Lundman (2004). In this method, researchers immerse themselves in the data to emerge a new insight [16]. We used four criteria of creditability, dependability, transferability and conformability of Guba and Lincoln to evaluate and validate the data [17]. To increase credibility, prolonged exposure with data, codes, and emerging classes (for 8 months) and peer review process were used. Feedbacks were also received from each participant about the codes and their interpretations. To confirm the dependability and conformability of the data, the peer review process was used in which one-week meetings were held between the second and third authors (one supervisor and a PhD student in nursing) and all stages of the research process including codes and classes were checked. The data collection and analysis was comprehensively described to ensure data transferability. 
Results
A total of 25 people participated in this study. The mean age of the participants was 44 years (26 to 61 years old). Most of the participants were female (87%), married (73%), and the patient's mother or spouse (68.41%), and most of the family caregivers held a diploma or lower degrees (63.15%) (Table 1). 


Creating interaction opportunities to reduce isolation 
This category indicates that caregivers and their patients reduced or even cut off contact with others to get rid of it due to misconceptions about MS. This social isolation or loneliness seeking is the beginning for other problems. 
Avoiding getting pity and compassion from others 
Participants believed that when extreme attention was paid to the patient, a bad feeling such as sense of pity was induced to the patient and the patient tended to reduce the relationship or even cut off it with others. In this way, the patient was accompanied by the caregiver voluntarily or involuntarily. «My daughter hates the extreme attention of others to her because of her illness. when someone asks me a question about her physical or mental condition, she asks me not to talk to them. I have to stay home because of her» (Participant no. P13). 
Rejection of the disease 
According to the participants, one of the main reasons for avoiding social interactions by the patient and the caregiver was non-acceptance of the disease, which was due to insufficient knowledge and awareness about the disease and fear of the patient›s unknown future and care needs. «When my wife heard that she had MS, she completely lost her self-confidence. At that moment, she could not stand on her feet. We were very careful not let others to know about her disease. We spent our time at home for a long time and didn’t go anywhere. We are still in the same condition.» (Participant no. P5). 
Reluctance to social interactions
Sometimes the patient›s reluctance to have leisure activities such as travel and communication with others for psychological and physical reasons prevented the caregiver from participating in social activities; even the caregiver became reluctant to perform leisure activities for reasons such as psychological burden of caregiving. «I can’t leave my son alone at home! even if I can and go to my sister or brother›s house, I always think of him. I don’t have the patience to talk to people.» (Participant no. P4)
Empathetic interaction with peers and treatment staff 
An open conversation between the treatment staff and caregivers about conditions and related needs can lead to a better sense of satisfaction in the family. One of the needs they mentioned was the friendship with other patients and caregivers, which leads to a better understanding of the disease and gaining hope. 
Attention of the treatment group is only to the patient 
Only attention of the treatment group to the patient and insufficient attention to family caregivers caused caregivers to feel lonely and unsupported against the challenges and problems of caregiving, and be less prepared for their roles. “If there is a program or counseling, it is because of our illness, but not if you mean me. They do not counsel me" (Participant no. P15).
Insufficient professional support
Other factor that caused the lack of empathetic communication with the treatment group was the lack of adequate professional support for patients and family caregivers. The high workload in medical centers make health care providers unable to pay attention to caregivers. “I expect more aids. We come a long distance even without receiving any financial aid for commuting. We have been referring to this center for several years; however, the relationships and supports should be better” (Participant no. P13).
Increasing the tolerance using the experiences of peers
Forming a group of peers to use their useful experiences has a great effect on creating hope for MS patients and their caregivers. Introducing the patients who continue their jobs and social life, despite of suffering from MS, is another effective step for improving people’s attitude towards the MS. “Caregivers and patients with different conditions of the disease should talk to each other in a group about their stress and how to reduce it. They can be in contact with each other and know about the course of the disease.” (Participant no. P5) 
Financial support
Financial problems and treatment costs were some of the concerns that many caregivers implicitly or explicitly spoke about it in the present study.
Losing the job
Most participants believed that caregiving roles for family caregivers of patients with MS had high burden and were time-consuming, leading to absenteeism in the workplace or leaving jobs. “I had to leave my job to be with my wife more. I found that I really could not be with my wife during working hours” (Participant no. P14) 
Costly treatment
The financial burden of the disease can be one of the causes for intensification of the disease complications. In many cases, patients have to tolerate financial difficulties to cover the costs of treatment. “The high cost of his treatment has put a high pressure on me! It has affected the whole family and caused a financial crisis in the family.” (Participant no. P11)
Inadequate organizational support and limited access to medical resources
One of the most important barriers to the use of medical centers is their high distance from the place of residence causing limited access to health facilities in addition to insufficient organizational support. “We do not have such facilities in our village, not even a specialist physician; we have to travel to Isfahan. It’s diffluent for my mother. When we visit the clinic, they give her just a painkiller” (Participant no. P12). 
Discussion
According to the participants, most family caregivers of MS patients do not receive adequate family, social and systemic support and do not have access to reliable sources of support. It is evident that the comprehensive and effective support is necessary due to the prevalence of chronic diseases and the fact that they have affected a wide range of people. This support should provide conditions for patients and caregivers so that they have no concern except to fight against the disease. 
Creating interaction opportunities to reduce the isolation of MS patients was among the needs perceived by the participants in the present study. Rejecting and hiding the disease seems to be a strategy used by patients to reduce their psychological burden. Patients reported perceived sense of pity and excessive attention. Hiding the disease has been discussed in the results of other studies related to patients with MS and their caregivers [17, 18, 19, 20]. The feeling of pity for patient is one of the reasons for disease hiding by them [17, 21]. Health care providers need to create interaction opportunities for patients so that they feel socially active and leave isolation. Returning to work and increased social interactions lead to the satisfaction in the patients and their families [22]. 
The findings of the current study in relation to empathetic interaction with peers and treatment staff, which was another need for social support of caregivers of MS patients, indicated that the social support from peers has a protective role for the patient and creates an atmosphere for easy expression of concerns. The experiences of peers can increase the tolerance in caregivers and patients. Sometimes effective interaction and communication between the treatment staff and family caregivers is not enough and their need for information and preparation may not met. Therefore, therapists should be taught how to communicate sincerely with them and better identify the problems that cause caregiving burden [23].
The findings of Hughes et al. indicated that friends and peers can help MS patients to return to the normal life more quickly; they can sympathize with them and better understand their feelings and perceptions [24]. The results of Bain et al. showed that communication is the core of effective care for MS patients. Communication of the team staff with the MS patients and their families plays an effective role in many aspects of caregiving; their poor communication can negatively affect the psychosocial and decision-making statuses and quality of life in MS patients and their caregivers [13]. Therefore, in patients that need caregiving for controlling diseases problems, talking with their caregivers about their conditions and related needs and problems can provide better care for the patients and cause better sense of satisfaction in the families.
Another need of the caregivers of MS patients was financial supports. One of the destructive effects of MS is that it imposes a heavy financial burden on patients and their families, which can even collapse the foundation of families. Job-related problems were another reason for caregivers’ financial challenges, which were mostly due to time-consuming nature of caregiving and the caregivers’ mental preoccupation. The participants believed that more financial support was required for the costs of treatment and follow-up and the government’s support was insufficient. There are many studies on MS patients that have shown that the financial status of caregivers is not favorable ease [21, 25, 26, 27, 28, 29]. One of the factors that make MS a costly neurological disease is that it occurs at a young age which is the age of employment and affects the patient for the rest of life. 
The MS disease affects the family income of individuals, and it is possible that the patients terminate treatment if not receive sufficient socio-economic support [9, 30]. There were major similarities between the results of previous studies and present study reported that the MS is costly disease and the patients and families alone cannot afford its costs and need financial support. It should be considered by officials and health care providers. Participants emphasized that the patients’ families should be introduced to volunteering charity groups in order to remove their financial burden. The health care system should also pay attention to the availability of drugs and the insurance support for these patients to increase their tolerance.
Conclusion 
Family caregivers of patients with MS have different needs in all aspects of life; not meeting these needs can affect other aspects. Caregivers of these patients in Iran do not receive adequate family, social and systemic supports and do not have access to reliable sources of support. Accordingly, policy makers and health care providers can develop a plan to support these caregivers so that they can optimally play their caregiving roles for MS patients, especially at home.

Ethical Considerations
Compliance with ethical guidelines
In this study, all participants were informed before the interview that their participation in the study is completely voluntary and they have the right to withdraw from the study and they were assured that all research information is confidential. Additionally, all participants  were informed about the importance, goal, and protocol of the study, and they were asked for the permission to record the interviews. This study was part of the nursing doctoral thesis approved by the ethics committee of the Shahid Beheshti University of Medical Sciences' Research Deputy (Code: IR.SBMU.PHNM.1397.53).

Funding
This article is part of the first author's PhD dissertation, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences.

Authors' contributions
Conceptualization: Bita Sadeghi and Fatemeh Estebsari; Investigation, Writing-original draft: Bita Sadeghi, Elahe h Sadeghi; Supervision: Fatemeh Estebsari; Methodology: Fatemeh Estebsari, Abbas Ebadi, Maryam Rasouli ; Writing-review & editing: Bita Sadeghi, Fatemeh Estebsari, Abbas Ebadi, Maryam Rasouli, Elaheh sadeghi.

Conflict of interest
The authors declared no conflict of interest.

Acknowledgments
The researchers are grateful to the officials of Isfahan MS Association and the research committee of Shahid Beheshti University of Medical Sciences and all the participants in the study who cooperated with them in conducting this research.



References

1. Friese MA, Schattling B, Fugger L. Mechanisms of neurodegeneration and axonal dysfunction in multiple sclerosis. Nature Reviews Neurology. 2014; 10(4):225-38. [DOI:10.1038/nrneurol.2014.37] [PMID]
2. Kutzelnigg A, Lassmann H. Pathology of multiple sclerosis and related inflammatory demyelinating diseases. Handbook of Clinical Neurology. 2014; 122:15-58. [PMID]
3. Topcu G, Buchanan H, Aubeeluck A, Garip G. Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research. Psychology & Health. 2016; 31(6):693-710. [PMID]
4. Gafari S, Khoshknab MF, Nourozi K, Mohamadi E. Informal caregivers’ experiences of caring of multiple sclerosis patients: A qualitative study. Iranian Journal of Nursing and Midwifery Research. 2017; 22(3):243-7. [PMID]
5. Etemadifar M, Maghzi AH. Sharp increase in the incidence and prevalence of multiple sclerosis in Isfahan, Iran. Multiple Sclerosis Journal. 2011; 17(8):1022-7. [DOI:10.1177/1352458511401460] [PMID]
6. Lexell EM, Iwarsson S, Lexell J. The complexity of daily occupations in multiple sclerosis. Scandinavian Journal of Occupational Therapy. 2006; 13(4):241-8. [PMID]
7. Navab E, Negarandeh R, Peyrovi H, Navab P. Stigma among Iranian family caregivers of patients with Alzheimer’s disease: A hermeneutic study. Nursing & Health Sciences. 2013; 15(2):201-6. [DOI:10.1111/nhs.12017] [PMID]
8. Masoudi R, Abedi H, Abedi P, Mohammadianinejad SE. The perspectives of Iranian patients with multiple sclerosis on continuity of care: A qualitative study. Journal of Nursing Research. 2015; 23(2):145-52. [DOI:10.1097/JNR.0000000000000070] [PMID]
9. Boyd M. Psychiatric nursing: Contemporary practice. Philadelphia: lippincott Williams & wilkins; 2008. [Link]
10. McKeown LP, Porter-Armstrong AP, Baxter GD. Caregivers of people with multiple sclerosis: Experiences of support. Multiple Sclerosis. 2004; 10(2):219-30. [DOI:10.1191/1352458504ms1008oa] [PMID]
11. Figved N, Myhr KM, Larsen JP, Aarsland D. Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms. Journal of Neurology, Neurosurgery & Psychiatry. 2007; 78(10):1097-102. [DOI:10.1136/jnnp.2006.104216] [PMID] [PMCID]
12. Bayen E, Papeix C, Pradat-Diehl P, Lubetzki C, Joël ME. Patterns of objective and subjective burden of informal caregivers in multiple sclerosis. Behavioural Neurology. 2015; 2015:648415. [DOI:10.1155/2015/648415] [PMID] [PMCID]
13. Abendroth M, Lutz BJ, Young ME. Family caregivers’ decision process to institutionalize persons with Parkinson’s disease: A grounded theory study. International Journal of Nursing Studies. 2012; 49(4):445-54. [DOI:10.1016/j.ijnurstu.2011.10.003] [PMID]
14. Bulley C, Baer G, Mahal D, Buckton CH, Donald S, Lugton K, et al. Supporting families and carers of people living with multiple sclerosis: A rapid realist review and realist evaluation. International Journal of Care and Caring. 2020; 5(2):263-82. [DOI:10.1332/239788220X16020938693101]
15. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative Health Research. 2005; 15(9):1277-88. [DOI:10.1177/1049732305276687] [PMID]
16. Graneheim UH, Lindgren BM, Lundman B. Methodological challenges in qualitative content analysis: A discussion paper. Nurse Education Today. 2017; 56:29-34. [DOI:10.1016/j.nedt.2017.06.002] [PMID]
17. Guba EG. Criteria for assessing the trustworthiness of naturalistic inquiries. Educational Technology Research and Development. 1981; 29(2):75-91. [DOI:10.1007/BF02766777]
18. Abolhassani S, Yazdannik A, Taleghani F, Zamani A. Social aspects of multiple sclerosis for Iranian individuals. Disability and Rehabilitation. 2015; 37(4):319-26. [PMID]
19. Rollero C. The experience of men caring for a partner with multiple sclerosis. Journal of Nursing Scholarship. 2016; 48(5):482-9. [DOI:10.1111/jnu.12231] [PMID]
20. Masoudi R, Khayeri F, Rabiei L, Zarea K. A study of stigma among Iranian family caregivers of patients with multiple sclerosis: A descriptive explorative qualitative study. Applied Nursing Research. 2017; 34:1-6. [DOI:10.1016/j.apnr.2016.11.012] [PMID]
21. Ghafari S, Fallahi-Khoshknab M, Nourozi K, Mohammadi E. Patients’ experiences of adapting to multiple sclerosis: A qualitative study. Contemporary Nurse. 2015; 50(1):36-49. [PMID]
22. Hoang VL, Green T, Bonner A. Informal caregivers’ experiences of caring for people receiving dialysis: A mixed-methods systematic review. Journal of Renal Care. 2018; 44(2):82-95. [DOI:10.1111/jorc.12235] [PMID]
23. Bahrami M, Etemadifar S, Shahriari M, Farsani AK. Caregiver burden among Iranian heart failure family caregivers: A descriptive, exploratory, qualitative study. Iranian Journal of Nursing and Midwifery Research. 2014; 19(1):56-63. [PMID]
24. Hughes N, Locock L, Ziebland S. Personal identity and the role of ‘carer’among relatives and friends of people with multiple sclerosis. Social Science & Medicine. 2013; 96:78-85. [DOI:10.1016/j.socscimed.2013.07.023] [PMID] [PMCID]
25. Masoudi R, Abedi HA, Abedi P, Mohammadianinejad SE. Iranian family caregivers’ challenges and issues in caring of multiple sclerosis patients: A descriptive explorative qualitative study. Iranian Journal of Nursing and Midwifery Research. 2014; 19(4):416-23. [PMID]
26. Opara J, Jaracz K, Brola W. Burden and quality of life in caregivers of persons with multiple sclerosis. Neurologia i Neurochirurgia Polska. 2012; 46(5):472-9. [DOI:10.5114/ninp.2012.31358] [PMID]
27. Buchanan RJ, Radin D, Huang C. Caregiver burden among informal caregivers assisting people with multiple sclerosis. International Journal of MS Care. 2011; 13(2):76-83. [DOI:10.7224/1537-2073-13.2.76] [PMID] [PMCID]
28. Bogosian A, Moss-Morris R, Yardley L, Dennison L. Experiences of partners of people in the early stages of multiple sclerosis. Multiple Sclerosis. 2009; 15(7):876-84. [DOI:10.1177/1352458508100048] [PMID]
29. Fotoukian Z, Mohammadi Shahboulaghi F, Fallahi Khoshknab M. [Analytical on empowerment interventions in older people with chronic disease: A review literature (Persian)]. Journal of Health Promotion Management. 2013; 2(4):65-76. [Link]
30. Peters M, Jenkinson C, Doll H, Playford ED, Fitzpatrick R. Carer quality of life and experiences of health services: A cross-sectional survey across three neurological conditions. Health and Quality of life Outcomes. 2013; 11:103. [PMID]