http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(4): 319–326 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2014.918192
RESEARCH PAPER
Social aspects of multiple sclerosis for Iranian individuals Shahla Abolhassani1, Ahmadreza Yazdannik2, Fariba Taleghani3, and Ahmadreza Zamani4 1
Faculty of Nursing and Midwifery, 2Critical Care Nursing Department, Faculty of Nursing and Midwifery, 3Adult Health Nursing Department, Nursing & Midwifery Care Research Center, Faculty of Nursing and Midwifery, and 4Community & Family Medicine Department, Faculty of Medicine, Isfahan University of Medical Sciences, Isfahan, Iran Abstract
Keywords
Purpose: This study aimed to determine the social aspects of multiple sclerosis (MS) in the Iranian individuals. Methods: A qualitative case study approach was used for this study, which is a part of a larger qualitative study about health care delivery system of MS. Participants were selected on the basis of purposive sampling method. Semi-structured interviews regarding the social aspects of MS were conducted with 18 MS patients, 6 family members and 7 health care providers. Besides interviews with the participants, documents related to the aim of the study, including weblogs, MS magazines, special websites of individuals with MS and news agencies. Data analysis was performed using the qualitative content analysis technique. Results: Data obtained has been categorised into five main categories, including confronting stigma symbols, the outcome of stigma, walling-in due to stigma, disturbance in normal life and concern about job. Conclusion: There are multiple social effects of MS on the afflicted individuals, which affect various dimensions of their life. Policy makers and health care providers must also consider these effects of MS on other dimensions of the individuals’ life.
Family, interview, multiple sclerosis, nurses, physicians, social aspects, stigma History Received 4 August 2013 Revised 11 April 2014 Accepted 22 April 2014 Published online 17 December 2014
ä Implications for Rehabilitation
Multiple sclerosis (MS) is a disease which restricts social life for patients, in addition to physical impacts. Individuals with MS experienced stigma as well as problems with employment and marital life, due to improper information about MS in society. We recommend that health care workers offer proper information about MS to patients and their family members to minimise the social problems faced by them. We recommend that mass media offers proper information about MS to people in society to disseminate the correct picture of MS. We recommend that the rehabilitation team offers psychological support to patients and their families for their empowerment, to facilitate dealing with the impacts of the disease. We recommend that health care providers teach the family members about patient support and communication skills.
Introduction Multiple sclerosis (MS) is a chronic, auto-immune neurological disease prevalent among young and middle-aged individuals [1,2]. Approximately 2.5 million people worldwide have MS. In Europe, the regions with high prevalence include Scandinavia, northern Germany and England [3]. The prevalence of MS has been estimated to be 51.9 per 100 000 individuals in Tehran, the capital of Iran [4]. In Isfahan, the third largest city in Iran, MS prevalence in 2004 and 2005 was estimated to be 35.5 per 100 000 individuals [5], whereas another study conducted from March 2003 to May 2010 estimated the prevalence rate to be 73.3 and incidence, 9.1 per 100 000 individuals [6].
Address for correspondence: Ahmadreza Yazdannik, Assistant Professor, Critical Care Nursing Department, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran. Tel: 00983137922941. E-mail: [email protected]
Patients with MS suffer from various sign and symptoms such as visual, motor, imbalance, sensory, pain, cognitive changes, depression and bladder and gastrointestinal disorders [7]. Other characteristics of the disease include unanticipated relapse and progression periods [8], which are characterised by the more disabling symptoms of the disease [1]. MS is a chronic disease which affects individuals mostly during youth, when the chief focus of most individuals is in developing a family life and career [1]. Like other chronic diseases, MS is a long-term affliction with periods of relapse, stability or improvement; long periods of treatment are required for controlling the disease [9]. An individual with MS has to live with the disease for many years with no expectations for improvement, like patients suffering from other chronic diseases [8]. Living with a chronic disease creates several challenges for the patient such as insecurity about present and future abilities, maintaining relations with family and friends and concern about lifestyle modifications [10]. MS thus potentially affects all dimensions of an individual’s life, including personal, social
320
S. Abolhassani et al.
and family aspects [11,12]. Several studies indicate that individuals with MS have reduced quality of life across all dimensions, including physical health, psychological well-being, role playing and social functioning [13–18]. The current study was conducted to determine the social aspects of MS in Iran, given the impact of socio-cultural factors on disease and health and the lack of previous investigations on this subject in Iran. Consistent with its status as an Islamic country, Muslims accounted for 99.4% of the population of Iran in 2011, as estimated by Iran Statistics Centre [19]. Religious beliefs often influence health and preconceptions about diseases [20]. Family is an important social institution in Iran, and women, in their roles as wives and mothers, represent its central axis [21]. As MS is prevalent among women, this disease also potentially affects entire families. Therefore, the present qualitative study was conducted with the aim of determining the social aspects of the disease by sharing the experiences of individuals with MS, their families and health care providers.
Materials and methods A qualitative case study approach was used for this study, which was a part of a larger qualitative study about health care delivery system of MS. This study method was selected to enhance an in-depth recognition of social aspects of MS from different angles, because case study is a research approach used for in-depth understanding of a multifaceted issue in real life [22]. The study participants were individuals with MS, their family members and health care providers including nurses, neurologists and counsellors. Participants were selected from MS clinics, neurology wards and MS associations. Family members of some patients, who play a key role in their care, were also selected. Purposive sampling method was used for the selection of the participants. The general eligibility conditions for the participants were the ability to take part in the interview and communicate their experiences, and a confirmed diagnosis of MS by the neurologist. The first participant was selected based on the inclusion criteria and study objective. The next participant was selected based on first interview analysis; sampling then continued with maximum variation (age, disease course and education level). Face-to-face, semi-structured interview with participants was used for obtaining information. First, the participants were asked to explain about their or their family members’ disease from the time of diagnosis, and talk about their experiences with the illness and its social aspects. In addition, health care providers were asked about the social aspects of MS faced by their patients. During the interview, more questions were asked by the research investigators when there was a need for further clarification. Care was taken that the participants were comfortable during the interview. Interviews were conducted in Isfahan MS clinic, Isfahan MS association and the participants’ home. All the interviews were recorded using voice recorder, and non-verbal behaviour of participants was noted through field notes by the research investigator. The mean interview duration was 51 min, with a range of 29 to 120 min. Efforts were made by the research investigator to set aside his/her own assumptions about the study subject (bracketing) [23], and interviews were continued until no new data was obtained. Data were saturated after conducting interviews with 31 participants, four participants were interviewed twice. The approval to conduct the study was granted by the Ethics Committee of the Isfahan University of Medical Sciences. The research investigator introduced herself to the participants and explained the objectives of the study; in addition, anonymity of the participants was also maintained during the data analysis
Disabil Rehabil, 2015; 37(4): 319–326
process. The participants were also assured that the privacy of the information would be maintained, and they were free to give up participating in the interview at any stage of the research; at the end, from their interviews were presented to them. Written informed consent was obtained from the participants. In this study, besides conducting interviews with the participants, the researcher proceeded to gather documents related to the objective of the study, including weblogs of MS patients, materials from news agencies, newspapers and special conservation issues of MS Centre website members of people with MS and bimonthly MS magazine. Subsequently, the information obtained from interviews and documents was analysed by conventional qualitative content analysis, which is a systematic approach for data coding and categorising [24] of written, verbal and visual communication messages [25]. This approach helps in avoiding the use of preconceived categories, but instead allows categories to emerge from the data. It also allows researchers to immerse themselves in the data, which in turn facilitates new insights. Categories were inductively created from the data [26]. Data analysis was performed according to Graneheim and Lundman. The interviews were transcribed word by word, and the transcribed interviews and documents, as units of analysis, were read line by line. The important words, sentences and phrases were determined as meaning units, and the main ideas derived from them were labelled as codes. Different codes were compared based on their differences and similarities and categorised into subcategories. In the following step, the subcategories were compared with one another, and those subcategories which were similar in terms of characteristics were combined. Data reduction continued with all analysis units until main categories emerged [27]. Prolonged engagement, feedback from participants and peer check were employed to increase the credibility of the study. The researcher met with participants repeatedly and conducted interviews in order to have prolonged engagement. In addition, the data and extracted contents after coding each interview were returned to the participants for confirmation that the codes and interpretations were accurate. The codes resulting from data were investigated by the researcher’s colleagues to survey peer understanding. All raw data such as recorded sounds and documentations were maintained to observe the process of audit trail. For transferability, the researcher proceeded to present exact description of the study process and the activities performed during the course of the study.
Results The study participants included 18 individuals with MS, 6 family members and 7 health care providers (3 nurses, 3 physicians and 1 counsellor). Demographic characteristics of participants are shown in Tables 1–3. The results of the study have been categorised into five main categories, including confronting stigma symbols, the outcome of stigma, walling-in due to stigma, disturbance in normal life and concern about job. Categories and subcategories are shown in Table 4. Confronting stigma symbols Participants of this study were confronted with stigma symbols in society and while dealing with people. Stigma is a set of attitudes, beliefs, thoughts and negative behaviours that cause fear, avoidance, prejudice and discrimination. Goffman defines stigma as ‘‘a situation that causes discrimination and prevents complete social acceptance’’ [28]. In the opinion of participants, stigma symbols included people misinformed behaviour and giant impression of MS in people’s
Social aspects of multiple sclerosis
DOI: 10.3109/09638288.2014.918192
321
Table 1. Demographic characteristics of individuals with MS. ID code
Age
Sex
38 22 27 37 35 39 27 25 40 38 29 40 46 43 30 27 39 23
Female Male Female Female Female Female Male Female Female Female Female Male Male Female Female Female Female Female
P1 P2 P3 P4 P5 P6 P7 P8 P9 P10 P11 P12 P13 P14 P15 P16 P17 P18
Marital status Married Single Married Single Married Married Single Married Married Married Married Married Married Married Single Married Married Married
Job
Education
Disease type
Housekeeper Unemployed House keeper Employee Housekeeper Housekeeper Unemployed Housekeeper Housekeeper House keeper Advocacy trainee Manager Teacher Housekeeper Employee Housekeeper Housekeeper Student
Diploma Diploma Junior high school BS Primary Primary BS BS Primary Diploma BS BS BS Diploma BS Senior high school diploma BS student
Years of disease
Secondary progressive Relapsing remitting Relapsing remitting Secondary progressive Relapsing remitting Relapsing remitting Relapsing remitting Relapsing remitting Relapsing remitting Secondary progressive Relapsing remitting Secondary progressive, wheelchair bound Relapsing remitting Secondary progressive Relapsing remitting Relapsing remitting Relapsing remitting Relapsing remitting
12 years 4 years 7 years 7 years 7 years 5 years 5 years 6 month 6 years 15 years 7 years 17 years 3 years 20 years 15 years 1 years 4 years 4 years
P, patient. Table 2. Demographic characteristics of family members.
ID code F1 F2 F3 F4 F5 F6
Age
Sex
Marital status
36 41 63 52 23 39
Female Female Female Female Female Male
Married Married Married Married Single Married
job
Education
Relation with individual with MS
Employee Teacher Housekeeper Teacher Student Seller
BS BS Primary BS BS student Primary
Wife Wife Mother Mother Daughter Husband
Age of individual with MS 40 46 36 30 43 32
Sex of individual with MS Male Male Female Female Female Female
Disease type of individual with MS
Years of disease
Progressive, wheelchair bound Relapsing Remitting Progressive, bed ridden Relapsing remitting Progressive, bed ridden Relapsing remitting
17 3 14 15 18 1
F, family member.
Table 3. Demographic characteristics of health care providers.
Table 4. Categories and subcategories of data.
ID code Age
Category
H1 H2 H3 H4 H5 H6 H7
28 31 49 42 44 47 35
Sex
Job
Female Female Male Female Male Female Female
Nurse Nurse Neurologist Nurse neurologist neurologist counselor
Education BS BS PhD BS PhD PhD MS
Work environment MS clinic MS clinic MS clinic & neurology ward Neurology ward MS clinic & neurology ward MS clinic & neurology ward MS society
H, health care provider.
mind. The participants pointed out that people in society show misinformed behaviour towards individuals with MS including unreasonable sympathy and pity towards them, resulting in feelings of weakness and inability and finally unhappiness in the participants. It is very bad for a person with MS or any other disease to think that people pity him/her. When I get off my car and sit on my wheelchair, so many people say, Oh, there is so much weakness, which make us unhappy and uncomfortable (P12). Other misinformed behaviour of people, from the points of view of the participants, included unwarranted attention by staring and looking. In one example, people around the MS patient prayed to God to treat him/her. This resulted in the MS patient feeling that he/she had an untreatable disease without any cure, necessitating that others pray to God for his/her cure; this meant
Confronting stigma symbols The outcome of stigma walling-in due to stigma Disturbance in normal life Concern about job
Subcategory Improper behaviour A giant face in the minds Stigma psychological burden Concealment burden Concealment Solitude Avoiding from services Concern about starting married life Concern about continuing married life Selection limitation Concern about maintaining job
that the MS patient assumed an ambiguous future for himself/ herself, which the patient found very annoying. Some people say different things. For example, May God helps you and cures this sickness; we think that it must be a very acute disease due to which everybody looks at us (P16). The gigantic impression of MS in the minds of people was another symbol of the stigma that participants experienced during their social interactions. Participants noted that people in society lack a correct recognition of the course of the illness, and assume that MS is equivalent to using a wheelchair and/or that MS is a contagious disease; thus, they try to avoid having relations with the patient.
322
S. Abolhassani et al.
Disabil Rehabil, 2015; 37(4): 319–326
They have the worst ideas in their minds; as soon as you say MS, they think a person is dependent on wheelchair or on injections and so on. Some people think it is contagious (F4).
preferred to conceal the illness due to the compassionate attitudes of people towards them and their lack of proper recognition of the illness.
Some of the participants in this study noted that mass media was largely responsible for the gigantic impression of MS in the minds of people, by providing a negative picture of the illness or wrong information about it, thus generating misinformed behaviour towards the person with MS and his/her family.
I didn’t tell anybody that I have MS because, instead of giving me hope, some of them say ‘Oh!’, which makes me unhappy; they say he/she sits on the wheelchair. What do his/her children do (P10?)
The problem is with the mass media as well; when they conduct interviews with MS patients, they only show those patients with very severe disease. Most of the programs I watched included very acute and severe patients on wheelchair and with speech difficulty; this has a very bad and negative effect on society (H2). Confrontation with stigma symbols had outcomes for participants which are described in the next category: ‘‘The outcome of stigma’’. The outcome of stigma Participants experienced concern and worry after they were confronted with stigma symbols. Moreover, MS patients and their families experienced the psychological burden of the stigma. Individuals with MS were worried that others had gained information about their illness and hence pitied them. I don’t like to tell anybody that I have MS; one of my relatives also has MS, she can’t walk at all and needs help, and I don’t like people’s compassionate attitudes (P8). Participants were worried about the misinformed behaviour of people in society due to lack of awareness about the illness and its cause. They were also unhappy that some people assumed that MS was a contagious disease, and thereby avoided these patients. A few participants were also worried about the misinformed behaviour of people towards them due to the possibility of their transferring the illness to children, thereby creating problems for their marriage. One of the mechanisms used by participants to reduce the psychological burden of stigma involved concealing the diagnosis from people around them, which in turn resulted in concern for the person with MS and his/her family. For the participant, concealment was equivalent to revealing diagnosis stress. On the other hand, the MS patient had lost the opportunity to obtain sympathy from others, resulting in loneliness, in addition to the worry about the illness. I have, of course, suffered more from concealing MS than due to its pain, because nobody knows about my illness after 5 years, and I am alone with it in all respects. Believe me that it is very difficult for a person to withstand MS pain and challenges with his/her problems, especially with nobody to sympathise with him/her and to ask what the problem is (from a weblog of an MS patient). The psychological burden of stigma caused participants used mechanisms for not experiencing stigma which are described in the next category: ‘‘Walling-in due to stigma’’. Walling-in due to stigma Participants used mechanisms such as concealment, solitude and avoiding services to escape stigma, after having confronted the stigma symbols and being unhappy about it. Participants
Following the concealment of illness by the MS patient and his/her family, the MS patient is confronted with limitations in familial and social relationships; he/she then begins to prefer not to be present among his/her relatives so that the diagnosis would remain concealed. We didn’t want to say anything about it, because it would be broadcast. We no longer deal with others; we make trips to the north all the time. We make plans beforehand, like this New Year, regarding where we should go for vacation (F4). Some of the participants who had motor problems avoided presence in society as far as possible and tried to spend most of their time at home. The inverse was also true, and some of the people in society avoided individuals with MS due to their idea that the illness was contagious. For all these reasons, individuals with MS preferred minimum presence in society. Everyone in our neighbourhood is native to the area. I don’t like going out with this foot; I feel ashamed. I don’t go out myself because everyone looks at us, and the strangers among them stare at us; I feel ashamed. For this reason, I don’t go out, and most of the time, I am at home (P14). Some participants also tried to avoid other MS patients, not due to the experience of illness stigma but because most of them had concealed their diagnosis, and hence did not use the available services. The instances of stigma and worry about revealing the diagnosis even to other individuals with MS instigated some participants to make trips to nearby cities for receiving the necessary services, or to obtain information through other members of their family, who would, in turn, spend time around other MS patients. All these problems prevented the MS patient from using existing services. Even if, sometimes, I wanted to go swimming, which was present at that saloon, I always preferred to go out; perhaps I was afraid that someone might see me (P11).
Disturbance in normal life Another social dimension of MS included disturbance in normal life. Participants had confronted problems with either beginning married life or its continuation. Single individuals with MS faced doubts about beginning married life due to their indeterminable future and illness prognosis; some of them, in fact, preferred not to proceed with marriage because of insecurity regarding the continuation of married life, having observed unsuccessful marriages of other MS patients and unwillingness to experience the associated stress. When you are affected with the disease, you will confront many problems with everything, especially since you don’t know what the illness is; that is the worst thing of all. I have still not proceeded with marriage because I don’t dare to do that, it is difficult (P7).
Social aspects of multiple sclerosis
DOI: 10.3109/09638288.2014.918192
One of the other problems associated with beginning married life lay in having to hide the diagnosis from the marriage partner. Some participants had concealed the diagnosis from their partners, because they were afraid of rejection of their marriage proposal by the partner; this, in turn, caused their spouse anxiety and family problems after the illness was disclosed. His illness had already started; he first said he was doubtful, and then he didn’t say anything. I don’t know why he concealed the illness; I asked him all the time why he didn’t tell me in the first place, because if I knew, I wouldn’t have accepted the proposal. Although I was very young, I was quite familiar with the illness, as I studied B.S. Psychology in the University. It was very annoying when I found out (F1). Participants who were married at the time of diagnosis were always concerned about the continuation of their married life. They were anxious about performing tasks related to married life in the future such as meeting the needs of family members, relationship with spouse and other family members, child caring, housekeeping, etc., due to the indeterminable nature of the illness in the coming years; they were afraid that this issue would cause separation from their spouse. Moreover, the participants had been confronted with the unsuccessful lives of their relatives with MS, which added to their anxiety. In some cases, the spouse requested divorce because he/she assumed a bad future, and the individual with MS accepted the divorce because he/she thought that the spouse was right. When I was first affected with the disease, my husband used to accompany me. But then, he began to ignore me, he would go out and come back late, and behave very coldly with me. When I asked the reason, he said ‘I don’t want you’. I then asked ‘Do you have any reason for that?’ and he said ‘It is because of your illness’. I withdrew myself easily because of my illness (P18). The participants had also requested their husbands to remarry; this request was raised by the female participants themselves or their relatives. The female participants did so because they thought they couldn’t afford to do daily tasks and would have problems with pregnancy; they were also anxious for the future of their spouse. Actually, I had decided about this issue and talked to my husband about it. I told him that it was not a problem for me, and that he could remarry because I thought it was better for me that way (P11). On the other hand, some of the female participants noted that the request for remarriage was raised with their husbands by their families, because they thought that the female patients would not be able to perform their tasks in the future. This caused the participants unhappiness, resulting in their trying to perform all of their tasks by themselves, despite the illness symptoms. Another problem that participants experienced was that marital wishes were ignored in the pursuit of illness-related problems. On one hand, the MS patients refrained from raising their wishes due to weakness, and on the other, their family members ignored their wishes due to the problems resulting from their care. An example: Others think I don’t like children. I tell him (my husband) that it is for you that I say no; I don’t like it because I don’t want you to become unhappy, otherwise, each woman wants to have children. All this is for you (F1).
323
Concern about job Concern about work was another social dimension of the illness. Those individuals who were searching for work faced problems with employment and with not admitting they were MS patients, whereas employed participants were also concerned about maintaining or losing their jobs due to their illness. One of the concerns for job selection pertained to the problems in obtaining employment. Participants noted that as soon as they announced the name of their illness, they would confront employment problems, with the employers hiring applicants who were not sick. Some participants noted that this problem arose due to lack of awareness about the illness. On the other hand, some participants had confronted limitations in job selection due to their illness symptoms. Unfortunately, a very severe and major problem for our young, sick sons is that, though they are well educated, they don’t have any job. One of the patients said ‘Wherever I go and mention I have MS, they don’t accept me or grant me any job’ (H2). The fear of losing their current job in the future due to illness symptoms such as fatigue, speaking or visual disorders was another of the concerns of participants. He just began to say ‘I would be afraid of stuttering’. He is very sensitive about his job, and has done his best to fully use his potential and finish his class (F2). Most of the participants preferred to conceal their illness in their working environment, due to their fear of losing their jobs. This is, in part, due to the wrong attitude of employers about the potential of individuals with MS, and the participants experienced an excessive pressure not to lose their jobs. On the other hand, some participants who had announced their illness in their working environments complained of misunderstanding and lack of support from others. I was working in a hospital, and they didn’t have the correct understanding of my situation. They didn’t permit me to rest even for a while; when I finished working, my colleagues would expect me to help them, and if I sat down, they looked daggers at me (expertise dialogue of members in MS Centre site).
Discussion The participants in this study had been confronted with stigma symbols. They experienced stigma following the misinformed behaviour of people, including unreasonable, compassionate attitude and praying to God for their cure. Unreasonable, compassionate and merciful attitude of people was a factor in their feeling helpless and weak. Such experiences of social stigma were also noted by the patients and their caregivers in a study conducted by Rivera-Navarro on the social dimensions of MS, the patients noted that they were worried about overprotection, and believed that it only helped them to a very small extent [29]. In yet another study conducted by Bruno, one of the factors that resulted in stigma for the individuals with epilepsy was found to be the merciful attitude of people in society [30]. Studies carried out by Chanzanagh et al. [31], Moneyham [32], Moses [33] and Masnari [34] showed that pity was a stigma symbol for the patients. Praying to God for the cure of the participants in the current study was considered a stigma factor as well. This is because, it resulted in the participants’ feeling incapable of doing anything, and assuming that they have been afflicted with an incurable and
324
S. Abolhassani et al.
devastating illness, necessitating that others pray to God for their cure. This was followed by people staring at them, which also caused anxiety to the participants. In Islam, prayer has an important role in the cure of disease [35]. From Islamic perspective, God is aware of all, including every one of his servants; God is the cause of everything and is capable of freeing his servants from disease and problems. Staring at individuals with facial complications, according to the study carried out by Masaneri [34], or just staring and looking attentively at individuals, according to Chanzanagh’s study [31], caused the experience of stigma, and was hence considered as stigma. Among other issues the participants had confronted was a gigantic impression of MS in the minds of people. They also believed that people had a bad attitude towards MS and a lack of proper awareness regarding the illness. The participants noted that people in society were of the opinion that MS was equivalent to disability and dependence on wheelchair; this perception was one of the reasons for the participants’ anxiety. Moreover, a study conducted by Jacobi et al. on the awareness and attitudes of people in society with respect to epilepsy indicated that some people had an incorrect attitude towards the disorder. They believed that people with epilepsy had more personality problems than do those without [36]. Participants of the current study considered that wrong information and incorrect depiction of MS by mass media were factors that contributed to stigma. Similarly, the study conducted by Klin indicated that mass media caused stigma for the patients with mental disorders by providing wrong information or magnifying the problem [37]. The experience of stigma by participants had consequences for them. The participants felt anxiety following the misinformed behaviour of people and misrecognition of MS. On the other hand, some participants who had concealed their illness were always worried about its accidental revelation; this anxiety prevented them from being around other MS patients, due to their fear of being seen by one of their relatives. Another cause of anxiety was worry regarding the relapse of MS on occasions that the participants spent with their friends and relatives, such as New Year vacations or marriage ceremonies, due to the unanticipated nature of the illness. This is in accordance with the results of the study carried out by Stutterheim et al., which indicated that the stigma related to HIV caused psychological stress to infected individuals, and that the three demonstrations of stigma, including avoidance, exaggerated kindness and requests to hide diagnosis, are strongly related to the psychological distress of the infected individuals [38]. Participants used coping mechanisms such as concealment, solitude and avoiding services. They tried to conceal their illness from others, even close friends and relatives. Such concealment, in turn, created problems such as lack of understanding of the participants’ situation in their working environment or among relatives; the same things continued to be expected from the participants as before, but the participant could no longer meet those expectations due to illness symptoms, which were typically not obvious to other people. Despite this drawback, the participants preferred to avoid illness-related stigma by this approach. In general, patients use different methods for coping with illness-associated stigma [39]. One such method involves the decision to either disclose his/her illness and suffer from the resulting stigma, or conceal it to avoid stigma. In the study carried out by Kilinc, epilepsy patients had concealed their illness, because of its non-obvious nature, to avoid the illness-related stigma; on the other hand, when they experienced the negative effects of concealment, especially during epileptic attacks, they now attempted to reveal their diagnosis [40]. For most
Disabil Rehabil, 2015; 37(4): 319–326
participants who experience stigma, there is a paradox involved in either concealing or revealing the diagnosis; the patient must choose between concealing the diagnosis and not benefiting from others’ help and services, or reveal the disease diagnosis, thereby using the available services but also experiencing stigma. Solitude was another coping mechanism for avoiding stigma, with the participants not presenting themselves in society. A study carried out by Bedini about perceived stigma and participation in social recreations by individuals with disability indicated that some participants tried to avoid taking part in these activities to conceal their disability and avoid experiencing stigma [41]. The study carried out by Varas-Diaz showed that one of the consequences of stigma associated with AIDS was isolation [42]. Another social aspect of MS faced by the participants of the current study included marriage-related problems. Participants were anxious about possible problems in married life due to unknown illness prognosis; for this reason, they were afraid of marriage. On the other hand, some participants had concealed their disease diagnosis during marriage due to fear of the other party’s withdrawal; this, in turn, caused psychological burden for the spouse and feelings of failure. The possibility of divorce was raised for those participants whose illness was diagnosed after marriage; this was a factor causing anxiety to these participants, prompting some female participants to suggest that their husbands remarry. This was because these female participants thought that they lacked the ability to live a normal life, and would confront problems in childbearing and performing their tasks. On the other hand, fear of spousal remarriage was also among the factors causing anxiety to female participants. Family is an important institution in Iran, such that identification of Iranian society is not possible without identification of families [21]. Islam places great emphasis on family. Marriage among Muslims is based on mutual interest and devotion. According to Islamic tradition, marriage is essential [43]. Sexuality in Iran is influenced by social, cultural and religious beliefs, and is permitted only within a marriage; sexuality outside of marriage is a taboo [44]. Considering that marriage is the basis for establishing families in Iranian culture and thus, for the development of a legal and successful society, the incidence of problems with married life due to illness potentially affects the social life of patients. The study carried out by Pfleger on the continuation of married life for individuals with MS indicated that the probability of divorce increased after disease diagnosis. According to this study, the probability of maintaining their marriage 5 years post-diagnosis was 86% in the patient group compared to 89% in the control group, as opposed to 33% versus 53% 24 years later [45]. Yet another social dimension of MS included employment of the participants. Maintaining the present job was among the concerns of individuals with MS. According to a study by Pfleger, the rate of employment loss for MS patients 5 and 20 years postdiagnosis was 70% and 22%, respectively [46]. In another study by Hakim, it was shown that 53% of MS patients had lost their jobs after illness diagnosis [47]. The studies by Morales-Gonzales on individuals with MS [48] and McCabe, on individuals with neurological disorders [49], also showed that the employment rates of afflicted individuals decreased after disease diagnosis. In the current study, participants who proceeded for first-time employment noted that they would confront problems by revealing the diagnosis, and that concealing the disease was a better option. In a study by Johnsons, the participants noted that they had concealed their diagnosis because of the reactions of other individuals in their working environment [50]. Other studies, including those by Rivera-Navarro [29], Fragso [51] and
DOI: 10.3109/09638288.2014.918192
Julian [52] indicated that reduced opportunities for obtaining employment was one of the social problems faced by MS patients.
Conclusions The results of this study highlight that it is necessary for authorities, policy makers, mass media and service providers for patients to amend MS-related awareness and information; this can be accomplished by offering proper information to the patients, their family and people in society, so that the social problems experienced by the patients can be reduced. This information could be about nature of disease, types of disease course, its controllability with treatment, not equalizing MS with disability and dependence and correct dealing with patients. This information could be delivered by social media such as radio, TV, newspapers, internet, etc., by different methods such as depiction documentary films of successful patients or interviewing with health care providers about the disease, its management and care. The experience of social problems can be a stress factor, causing psychological problems for the patients and their families, while also affecting the coping mechanism of patients, leading them to embrace wrong coping mechanisms. In addition, psychological problems, arising as a result of these social problems, can eclipse the progress and control trend of the illness. Therefore, it is necessary to provide psychological support to patients and their families, and reinforce their coping skills to help them cope with this disease and its social impact, and finally, promote self-worth and self-esteem.
Acknowledgements The authors would like to thank the individuals with MS, their family members and health care providers who participated in this study.
Declaration of interest The authors report no declarations of interest. This work was supported by the Isfahan University of medical sciences.
References 1. Zwibel H. Health and quality of life in patients with relapsing multiple sclerosis: making the intangible tangible. J Neurol Sci 2009;287:S11–16. 2. Motl RW, Suh Y, Weikert M. Symptom cluster and quality of life in multiple sclerosis. J Pain Symptom Man 2010;39:1025–32. 3. Hickey JV. The clinical practice of neurological & neurosurgical nursing, 6th ed. Philadelphia (PA): Wolters Kluwer/Lippincott Williams & Wilkins; 2009. 4. Sahraian MA, Khorramnia S, Ebrahim MM, et al. Multiple sclerosis in Iran: a demographic study of 8000 patients and changes over time. Eur Neurol 2010;64:331–6. 5. Etemadifar M, Janghorbani M, Shaygannejad V, Ashtari F. Prevalence of multiple sclerosis in Isfahan, Iran. Neuroepidemiology 2006;27: 39–44. 6. Etemadifar M, Maghzi AH. Sharp increase in the incidence and prevalence of multiple sclerosis in Isfahan, Iran. Mult Scler 2011;17: 1022–7. 7. Dunn J. Impact of mobility impairment on the burden of caregiving in individuals with multiple sclerosis. Expert Rev Pharmacoecon Outcomes Res 2010;10:433–40. 8. Halper J. The psychosocial effect of multiple sclerosis: the impact of relapses. J Neurol Sci 2007;256:S34–8. 9. Lima MG, Barros MB, Ce´sar CL, et al. Impact of chronic disease on quality of life among the elderly in the state of Sa˜o Paulo, Brazil: a population-based study. Revista Panamericana de Salud Pu´blica 2009;25:314–21. 10. Heijmans M, Rijken M, Foets M, et al. The stress of being chronically ill: from disease-specific to task-specific aspects. J Behav Med 2004;27:255–71.
Social aspects of multiple sclerosis
325
11. Jennum P, Wanscher B, Frederiksen J, Kjellberg J. The socioeconomic consequences of multiple sclerosis: a controlled national study. Eur Neuropsychopharmacol 2012;22:36–43. 12. Mohr DC, Dick LP, Russo D, et al. The psychosocial impact of multiple sclerosis: exploring the patient’s perspective. Health Psychol 1999;18:376–82. 13. Ghaem H, Borhani Haghighi A. The impact of disability, fatigue and sleep quality on the quality of life in multiple sclerosis. Ann Indian Acad Neurol 2008;11:236–41. 14. Pakpour AH, Yekaninejad MS, Mohammadi NK, et al. Healthrelated quality of life in Iranian patients with multiple sclerosis: a cross-cultural study. Neurol Neurochir Pol 2009;43:517–26. 15. Aymerich M, Guillamon I, Jovell AJ. Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe). Patient Prefer Adhere 2009;3:311–21. 16. Miller A, Dishon S. Health-related quality of life in multiple sclerosis: the impact of disability, gender and employment status. Qual Life Res 2006;15:259–71. 17. McCabe MP, McKern S. Quality of life and multiple sclerosis: comparison between people with multiple sclerosis and people from the general population. J Clin Psychol Med Sett 2002;9:287–95. 18. Einarsson U, Gottberg K, Fredrikson S, et al. Activities of daily living and social activities in people with multiple sclerosis in Stockholm County. Clin Rehabil 2006;20:543–51. 19. Iran statistic center. General population and housing census 2011. Available from: www.Amar.Org.ir. 20. Chatters LM. Religion and health: public health research and practice. Ann Rev Publ Health 2000;21:335–67. 21. Azadarmaki T, Bahar M. Families in Iran: changes, challenges and future. J Comparat Family Stud 2006;37:589–608. 22. Crowe S, Cresswell K, Robertson A, et al. The case study approach. BMC Med Res Methodol 2011;11:100–8. 23. Tufford L, Newman P. Bracketing in qualitative research. Qualit Soc Work 2012;11:80–96. 24. Grbich C. Qualitative data analysis: an introduction. Los Angeles: Sage publication; 2012. 25. Elo S, Kynga¨s H. The qualitative content analysis process. J Adv Nurs 2008;62:107–15. 26. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qualit Health Res 2005;15:1277–88. 27. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004;24:105–12. 28. Weiss MG, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions 1. Psychol Health Med 2006; 11:277–87. 29. Rivera-Navarro J, Morales-Gonza´lez JM, Benito-Leo´n J, Mitchell AJ. The social and familial dimension: experiences of caregivers and people with multiple sclerosis. The GEDMA study]. Revista de Neurologia 2008;47:281–5. 30. Bruno E, Bartoloni A, Sofia V, et al. Epilepsy-associated stigma in Bolivia: a community-based study among the Guarani population: an international league against epilepsy/international bureau for epilepsy/world health organization global campaign against epilepsy regional project. Epilep Behav 2012;25:131–6. 31. Chanzanagh HE, Piri A, Garjan EA. The disabled and their everyday life exoeriences in iranian culture. Int J Soc Sci Human Stud 2012;4: 175–84. 32. Moneyham L, Seals B, Demi A, et al. Perceptions of stigma in women infected with HIV. AIDS Patient Care STDs 1996;10:162–7. 33. Moses T. Being treated differently: stigma experiences with family, peers, and school staff among adolescents with mental health disorders. Soc Sci Med 2006;70:985–93. 34. Masnari O, Landolt MA, Roessler J, et al. Self-and parent-perceived stigmatisation in children and adolescents with congenital or acquired facial differences. J Plastic, Reconstruct Aesthet Surg 2012;65:1664–70. 35. Javaheri F. Prayer healing: an experiential description of Iranian prayer healing. J Rel Health 2006;45:171–82. 36. Jacoby A, Gorry J, Gamble C, Baker GA. Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia 2004;45:1405–15. 37. Klin A, Lemish D. Mental disorders stigma in the media: review of studies on production, content, and influences. J Health Commun 2008;13:434–49.
326
S. Abolhassani et al.
38. Stutterheim SE, Pryor JB, Bos AE, et al. HIV-related stigma and psychological distress: the harmful effects of specific stigma manifestations in various social settings. AIDS 2009;23:2353–7. 39. Joachim G, Acorn S. Stigma of visible and invisible chronic conditions. J Adv Nurs 2000;32:243–8. 40. Kilinc¸ S, Campbell C. ‘‘It shouldn’t be something that’s evil, it should be talked about’’: a phenomenological approach to epilepsy and stigma. Seizure: J Brit Epilepsy Assoc 2009;18:665–71. 41. Bedini LA. ‘‘Just sit down so we can talk:’’ perceived stigma and community recreation pursuits of people with disabilities. Therapeut Recreat J 2000;34:55–68. 42. Varas-Diaz N, Serrano-Garcia I, Toro-Alfonso J. AIDS-related stigma and social interaction: Puerto Ricans living with HIV/AIDS. Qualitat Health Res 2005;15:169–87. 43. Mutahhari M. Sexual ethics in Islam and in the Western world. ICAS Press. Foreign Department of Bethat Foundation; 2011. 44. Aghajanian A. Family and family change in Iran. Fayetteville (NC): Department of Sociology Fayetteville State University; 2001. 45. Pfleger CCH, Flachs EM, Koch-Henriksen N. Social consequences of multiple sclerosis (1): early pension and temporary unemployment—a historical prospective cohort study. Multiple Scler 2010;16: 121–6.
Disabil Rehabil, 2015; 37(4): 319–326
46. Pfleger C, Flachs E, Koch-Henriksen N. Social consequences of multiple sclerosis. Part 2. Divorce and separation: a historical prospective cohort study. Multiple Scler 2010;16:878–82. 47. Hakim AB, Bryant TN, Roberts MWH, et al. The social impact of multiple sclerosis-a study of 305 patients and their relatives. Disabil Rehabil 2000;22:288–93. 48. Morales-Gonzales JM, Benito-Leon J, Rivera-Navarro J, Mitchell AJ; GEMDA Study Group. A systematic approach to analyse health related quality of life in multiple sclerosis: the GEMDA study. Mult Scler 2004;10:47–54. 49. McCabe MP, Roberts C, Firth L. Work and recreational changes among people with neurological illness and their caregivers. Disabil Rehabil 2008;3:600–10. 50. Johnson KL, Yorkston KM, Klasner ER, et al. The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis. Archiv Phys Med Rehabil 2004;85:201–9. 51. Fragoso YD, Finkelsztejn A, Giacomo MCB, et al. The effect of multiple sclerosis on the professional life of a group of Brazilian patients. Arquivos de neuro-psiquiatria 2010;68:914–17. 52. Julian LJ, Vella L, Vollmer T, et al. Employment in multiple sclerosis. J Neurol 2008;255:1354–60.
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
RESEARCH PAPER
Social aspects of multiple sclerosis for Iranian individuals Shahla Abolhassani1, Ahmadreza Yazdannik2, Fariba Taleghani3, and Ahmadreza Zamani4 1
Faculty of Nursing and Midwifery, 2Critical Care Nursing Department, Faculty of Nursing and Midwifery, 3Adult Health Nursing Department, Nursing & Midwifery Care Research Center, Faculty of Nursing and Midwifery, and 4Community & Family Medicine Department, Faculty of Medicine, Isfahan University of Medical Sciences, Isfahan, Iran Abstract
Keywords
Purpose: This study aimed to determine the social aspects of multiple sclerosis (MS) in the Iranian individuals. Methods: A qualitative case study approach was used for this study, which is a part of a larger qualitative study about health care delivery system of MS. Participants were selected on the basis of purposive sampling method. Semi-structured interviews regarding the social aspects of MS were conducted with 18 MS patients, 6 family members and 7 health care providers. Besides interviews with the participants, documents related to the aim of the study, including weblogs, MS magazines, special websites of individuals with MS and news agencies. Data analysis was performed using the qualitative content analysis technique. Results: Data obtained has been categorised into five main categories, including confronting stigma symbols, the outcome of stigma, walling-in due to stigma, disturbance in normal life and concern about job. Conclusion: There are multiple social effects of MS on the afflicted individuals, which affect various dimensions of their life. Policy makers and health care providers must also consider these effects of MS on other dimensions of the individuals’ life.
Family, interview, multiple sclerosis, nurses, physicians, social aspects, stigma History Received 4 August 2013 Revised 11 April 2014 Accepted 22 April 2014 Published online 17 December 2014
ä Implications for Rehabilitation
Multiple sclerosis (MS) is a disease which restricts social life for patients, in addition to physical impacts. Individuals with MS experienced stigma as well as problems with employment and marital life, due to improper information about MS in society. We recommend that health care workers offer proper information about MS to patients and their family members to minimise the social problems faced by them. We recommend that mass media offers proper information about MS to people in society to disseminate the correct picture of MS. We recommend that the rehabilitation team offers psychological support to patients and their families for their empowerment, to facilitate dealing with the impacts of the disease. We recommend that health care providers teach the family members about patient support and communication skills.
Introduction Multiple sclerosis (MS) is a chronic, auto-immune neurological disease prevalent among young and middle-aged individuals [1,2]. Approximately 2.5 million people worldwide have MS. In Europe, the regions with high prevalence include Scandinavia, northern Germany and England [3]. The prevalence of MS has been estimated to be 51.9 per 100 000 individuals in Tehran, the capital of Iran [4]. In Isfahan, the third largest city in Iran, MS prevalence in 2004 and 2005 was estimated to be 35.5 per 100 000 individuals [5], whereas another study conducted from March 2003 to May 2010 estimated the prevalence rate to be 73.3 and incidence, 9.1 per 100 000 individuals [6].
Address for correspondence: Ahmadreza Yazdannik, Assistant Professor, Critical Care Nursing Department, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran. Tel: 00983137922941. E-mail: [email protected]
Patients with MS suffer from various sign and symptoms such as visual, motor, imbalance, sensory, pain, cognitive changes, depression and bladder and gastrointestinal disorders [7]. Other characteristics of the disease include unanticipated relapse and progression periods [8], which are characterised by the more disabling symptoms of the disease [1]. MS is a chronic disease which affects individuals mostly during youth, when the chief focus of most individuals is in developing a family life and career [1]. Like other chronic diseases, MS is a long-term affliction with periods of relapse, stability or improvement; long periods of treatment are required for controlling the disease [9]. An individual with MS has to live with the disease for many years with no expectations for improvement, like patients suffering from other chronic diseases [8]. Living with a chronic disease creates several challenges for the patient such as insecurity about present and future abilities, maintaining relations with family and friends and concern about lifestyle modifications [10]. MS thus potentially affects all dimensions of an individual’s life, including personal, social
320
S. Abolhassani et al.
and family aspects [11,12]. Several studies indicate that individuals with MS have reduced quality of life across all dimensions, including physical health, psychological well-being, role playing and social functioning [13–18]. The current study was conducted to determine the social aspects of MS in Iran, given the impact of socio-cultural factors on disease and health and the lack of previous investigations on this subject in Iran. Consistent with its status as an Islamic country, Muslims accounted for 99.4% of the population of Iran in 2011, as estimated by Iran Statistics Centre [19]. Religious beliefs often influence health and preconceptions about diseases [20]. Family is an important social institution in Iran, and women, in their roles as wives and mothers, represent its central axis [21]. As MS is prevalent among women, this disease also potentially affects entire families. Therefore, the present qualitative study was conducted with the aim of determining the social aspects of the disease by sharing the experiences of individuals with MS, their families and health care providers.
Materials and methods A qualitative case study approach was used for this study, which was a part of a larger qualitative study about health care delivery system of MS. This study method was selected to enhance an in-depth recognition of social aspects of MS from different angles, because case study is a research approach used for in-depth understanding of a multifaceted issue in real life [22]. The study participants were individuals with MS, their family members and health care providers including nurses, neurologists and counsellors. Participants were selected from MS clinics, neurology wards and MS associations. Family members of some patients, who play a key role in their care, were also selected. Purposive sampling method was used for the selection of the participants. The general eligibility conditions for the participants were the ability to take part in the interview and communicate their experiences, and a confirmed diagnosis of MS by the neurologist. The first participant was selected based on the inclusion criteria and study objective. The next participant was selected based on first interview analysis; sampling then continued with maximum variation (age, disease course and education level). Face-to-face, semi-structured interview with participants was used for obtaining information. First, the participants were asked to explain about their or their family members’ disease from the time of diagnosis, and talk about their experiences with the illness and its social aspects. In addition, health care providers were asked about the social aspects of MS faced by their patients. During the interview, more questions were asked by the research investigators when there was a need for further clarification. Care was taken that the participants were comfortable during the interview. Interviews were conducted in Isfahan MS clinic, Isfahan MS association and the participants’ home. All the interviews were recorded using voice recorder, and non-verbal behaviour of participants was noted through field notes by the research investigator. The mean interview duration was 51 min, with a range of 29 to 120 min. Efforts were made by the research investigator to set aside his/her own assumptions about the study subject (bracketing) [23], and interviews were continued until no new data was obtained. Data were saturated after conducting interviews with 31 participants, four participants were interviewed twice. The approval to conduct the study was granted by the Ethics Committee of the Isfahan University of Medical Sciences. The research investigator introduced herself to the participants and explained the objectives of the study; in addition, anonymity of the participants was also maintained during the data analysis
Disabil Rehabil, 2015; 37(4): 319–326
process. The participants were also assured that the privacy of the information would be maintained, and they were free to give up participating in the interview at any stage of the research; at the end, from their interviews were presented to them. Written informed consent was obtained from the participants. In this study, besides conducting interviews with the participants, the researcher proceeded to gather documents related to the objective of the study, including weblogs of MS patients, materials from news agencies, newspapers and special conservation issues of MS Centre website members of people with MS and bimonthly MS magazine. Subsequently, the information obtained from interviews and documents was analysed by conventional qualitative content analysis, which is a systematic approach for data coding and categorising [24] of written, verbal and visual communication messages [25]. This approach helps in avoiding the use of preconceived categories, but instead allows categories to emerge from the data. It also allows researchers to immerse themselves in the data, which in turn facilitates new insights. Categories were inductively created from the data [26]. Data analysis was performed according to Graneheim and Lundman. The interviews were transcribed word by word, and the transcribed interviews and documents, as units of analysis, were read line by line. The important words, sentences and phrases were determined as meaning units, and the main ideas derived from them were labelled as codes. Different codes were compared based on their differences and similarities and categorised into subcategories. In the following step, the subcategories were compared with one another, and those subcategories which were similar in terms of characteristics were combined. Data reduction continued with all analysis units until main categories emerged [27]. Prolonged engagement, feedback from participants and peer check were employed to increase the credibility of the study. The researcher met with participants repeatedly and conducted interviews in order to have prolonged engagement. In addition, the data and extracted contents after coding each interview were returned to the participants for confirmation that the codes and interpretations were accurate. The codes resulting from data were investigated by the researcher’s colleagues to survey peer understanding. All raw data such as recorded sounds and documentations were maintained to observe the process of audit trail. For transferability, the researcher proceeded to present exact description of the study process and the activities performed during the course of the study.
Results The study participants included 18 individuals with MS, 6 family members and 7 health care providers (3 nurses, 3 physicians and 1 counsellor). Demographic characteristics of participants are shown in Tables 1–3. The results of the study have been categorised into five main categories, including confronting stigma symbols, the outcome of stigma, walling-in due to stigma, disturbance in normal life and concern about job. Categories and subcategories are shown in Table 4. Confronting stigma symbols Participants of this study were confronted with stigma symbols in society and while dealing with people. Stigma is a set of attitudes, beliefs, thoughts and negative behaviours that cause fear, avoidance, prejudice and discrimination. Goffman defines stigma as ‘‘a situation that causes discrimination and prevents complete social acceptance’’ [28]. In the opinion of participants, stigma symbols included people misinformed behaviour and giant impression of MS in people’s
Social aspects of multiple sclerosis
DOI: 10.3109/09638288.2014.918192
321
Table 1. Demographic characteristics of individuals with MS. ID code
Age
Sex
38 22 27 37 35 39 27 25 40 38 29 40 46 43 30 27 39 23
Female Male Female Female Female Female Male Female Female Female Female Male Male Female Female Female Female Female
P1 P2 P3 P4 P5 P6 P7 P8 P9 P10 P11 P12 P13 P14 P15 P16 P17 P18
Marital status Married Single Married Single Married Married Single Married Married Married Married Married Married Married Single Married Married Married
Job
Education
Disease type
Housekeeper Unemployed House keeper Employee Housekeeper Housekeeper Unemployed Housekeeper Housekeeper House keeper Advocacy trainee Manager Teacher Housekeeper Employee Housekeeper Housekeeper Student
Diploma Diploma Junior high school BS Primary Primary BS BS Primary Diploma BS BS BS Diploma BS Senior high school diploma BS student
Years of disease
Secondary progressive Relapsing remitting Relapsing remitting Secondary progressive Relapsing remitting Relapsing remitting Relapsing remitting Relapsing remitting Relapsing remitting Secondary progressive Relapsing remitting Secondary progressive, wheelchair bound Relapsing remitting Secondary progressive Relapsing remitting Relapsing remitting Relapsing remitting Relapsing remitting
12 years 4 years 7 years 7 years 7 years 5 years 5 years 6 month 6 years 15 years 7 years 17 years 3 years 20 years 15 years 1 years 4 years 4 years
P, patient. Table 2. Demographic characteristics of family members.
ID code F1 F2 F3 F4 F5 F6
Age
Sex
Marital status
36 41 63 52 23 39
Female Female Female Female Female Male
Married Married Married Married Single Married
job
Education
Relation with individual with MS
Employee Teacher Housekeeper Teacher Student Seller
BS BS Primary BS BS student Primary
Wife Wife Mother Mother Daughter Husband
Age of individual with MS 40 46 36 30 43 32
Sex of individual with MS Male Male Female Female Female Female
Disease type of individual with MS
Years of disease
Progressive, wheelchair bound Relapsing Remitting Progressive, bed ridden Relapsing remitting Progressive, bed ridden Relapsing remitting
17 3 14 15 18 1
F, family member.
Table 3. Demographic characteristics of health care providers.
Table 4. Categories and subcategories of data.
ID code Age
Category
H1 H2 H3 H4 H5 H6 H7
28 31 49 42 44 47 35
Sex
Job
Female Female Male Female Male Female Female
Nurse Nurse Neurologist Nurse neurologist neurologist counselor
Education BS BS PhD BS PhD PhD MS
Work environment MS clinic MS clinic MS clinic & neurology ward Neurology ward MS clinic & neurology ward MS clinic & neurology ward MS society
H, health care provider.
mind. The participants pointed out that people in society show misinformed behaviour towards individuals with MS including unreasonable sympathy and pity towards them, resulting in feelings of weakness and inability and finally unhappiness in the participants. It is very bad for a person with MS or any other disease to think that people pity him/her. When I get off my car and sit on my wheelchair, so many people say, Oh, there is so much weakness, which make us unhappy and uncomfortable (P12). Other misinformed behaviour of people, from the points of view of the participants, included unwarranted attention by staring and looking. In one example, people around the MS patient prayed to God to treat him/her. This resulted in the MS patient feeling that he/she had an untreatable disease without any cure, necessitating that others pray to God for his/her cure; this meant
Confronting stigma symbols The outcome of stigma walling-in due to stigma Disturbance in normal life Concern about job
Subcategory Improper behaviour A giant face in the minds Stigma psychological burden Concealment burden Concealment Solitude Avoiding from services Concern about starting married life Concern about continuing married life Selection limitation Concern about maintaining job
that the MS patient assumed an ambiguous future for himself/ herself, which the patient found very annoying. Some people say different things. For example, May God helps you and cures this sickness; we think that it must be a very acute disease due to which everybody looks at us (P16). The gigantic impression of MS in the minds of people was another symbol of the stigma that participants experienced during their social interactions. Participants noted that people in society lack a correct recognition of the course of the illness, and assume that MS is equivalent to using a wheelchair and/or that MS is a contagious disease; thus, they try to avoid having relations with the patient.
322
S. Abolhassani et al.
Disabil Rehabil, 2015; 37(4): 319–326
They have the worst ideas in their minds; as soon as you say MS, they think a person is dependent on wheelchair or on injections and so on. Some people think it is contagious (F4).
preferred to conceal the illness due to the compassionate attitudes of people towards them and their lack of proper recognition of the illness.
Some of the participants in this study noted that mass media was largely responsible for the gigantic impression of MS in the minds of people, by providing a negative picture of the illness or wrong information about it, thus generating misinformed behaviour towards the person with MS and his/her family.
I didn’t tell anybody that I have MS because, instead of giving me hope, some of them say ‘Oh!’, which makes me unhappy; they say he/she sits on the wheelchair. What do his/her children do (P10?)
The problem is with the mass media as well; when they conduct interviews with MS patients, they only show those patients with very severe disease. Most of the programs I watched included very acute and severe patients on wheelchair and with speech difficulty; this has a very bad and negative effect on society (H2). Confrontation with stigma symbols had outcomes for participants which are described in the next category: ‘‘The outcome of stigma’’. The outcome of stigma Participants experienced concern and worry after they were confronted with stigma symbols. Moreover, MS patients and their families experienced the psychological burden of the stigma. Individuals with MS were worried that others had gained information about their illness and hence pitied them. I don’t like to tell anybody that I have MS; one of my relatives also has MS, she can’t walk at all and needs help, and I don’t like people’s compassionate attitudes (P8). Participants were worried about the misinformed behaviour of people in society due to lack of awareness about the illness and its cause. They were also unhappy that some people assumed that MS was a contagious disease, and thereby avoided these patients. A few participants were also worried about the misinformed behaviour of people towards them due to the possibility of their transferring the illness to children, thereby creating problems for their marriage. One of the mechanisms used by participants to reduce the psychological burden of stigma involved concealing the diagnosis from people around them, which in turn resulted in concern for the person with MS and his/her family. For the participant, concealment was equivalent to revealing diagnosis stress. On the other hand, the MS patient had lost the opportunity to obtain sympathy from others, resulting in loneliness, in addition to the worry about the illness. I have, of course, suffered more from concealing MS than due to its pain, because nobody knows about my illness after 5 years, and I am alone with it in all respects. Believe me that it is very difficult for a person to withstand MS pain and challenges with his/her problems, especially with nobody to sympathise with him/her and to ask what the problem is (from a weblog of an MS patient). The psychological burden of stigma caused participants used mechanisms for not experiencing stigma which are described in the next category: ‘‘Walling-in due to stigma’’. Walling-in due to stigma Participants used mechanisms such as concealment, solitude and avoiding services to escape stigma, after having confronted the stigma symbols and being unhappy about it. Participants
Following the concealment of illness by the MS patient and his/her family, the MS patient is confronted with limitations in familial and social relationships; he/she then begins to prefer not to be present among his/her relatives so that the diagnosis would remain concealed. We didn’t want to say anything about it, because it would be broadcast. We no longer deal with others; we make trips to the north all the time. We make plans beforehand, like this New Year, regarding where we should go for vacation (F4). Some of the participants who had motor problems avoided presence in society as far as possible and tried to spend most of their time at home. The inverse was also true, and some of the people in society avoided individuals with MS due to their idea that the illness was contagious. For all these reasons, individuals with MS preferred minimum presence in society. Everyone in our neighbourhood is native to the area. I don’t like going out with this foot; I feel ashamed. I don’t go out myself because everyone looks at us, and the strangers among them stare at us; I feel ashamed. For this reason, I don’t go out, and most of the time, I am at home (P14). Some participants also tried to avoid other MS patients, not due to the experience of illness stigma but because most of them had concealed their diagnosis, and hence did not use the available services. The instances of stigma and worry about revealing the diagnosis even to other individuals with MS instigated some participants to make trips to nearby cities for receiving the necessary services, or to obtain information through other members of their family, who would, in turn, spend time around other MS patients. All these problems prevented the MS patient from using existing services. Even if, sometimes, I wanted to go swimming, which was present at that saloon, I always preferred to go out; perhaps I was afraid that someone might see me (P11).
Disturbance in normal life Another social dimension of MS included disturbance in normal life. Participants had confronted problems with either beginning married life or its continuation. Single individuals with MS faced doubts about beginning married life due to their indeterminable future and illness prognosis; some of them, in fact, preferred not to proceed with marriage because of insecurity regarding the continuation of married life, having observed unsuccessful marriages of other MS patients and unwillingness to experience the associated stress. When you are affected with the disease, you will confront many problems with everything, especially since you don’t know what the illness is; that is the worst thing of all. I have still not proceeded with marriage because I don’t dare to do that, it is difficult (P7).
Social aspects of multiple sclerosis
DOI: 10.3109/09638288.2014.918192
One of the other problems associated with beginning married life lay in having to hide the diagnosis from the marriage partner. Some participants had concealed the diagnosis from their partners, because they were afraid of rejection of their marriage proposal by the partner; this, in turn, caused their spouse anxiety and family problems after the illness was disclosed. His illness had already started; he first said he was doubtful, and then he didn’t say anything. I don’t know why he concealed the illness; I asked him all the time why he didn’t tell me in the first place, because if I knew, I wouldn’t have accepted the proposal. Although I was very young, I was quite familiar with the illness, as I studied B.S. Psychology in the University. It was very annoying when I found out (F1). Participants who were married at the time of diagnosis were always concerned about the continuation of their married life. They were anxious about performing tasks related to married life in the future such as meeting the needs of family members, relationship with spouse and other family members, child caring, housekeeping, etc., due to the indeterminable nature of the illness in the coming years; they were afraid that this issue would cause separation from their spouse. Moreover, the participants had been confronted with the unsuccessful lives of their relatives with MS, which added to their anxiety. In some cases, the spouse requested divorce because he/she assumed a bad future, and the individual with MS accepted the divorce because he/she thought that the spouse was right. When I was first affected with the disease, my husband used to accompany me. But then, he began to ignore me, he would go out and come back late, and behave very coldly with me. When I asked the reason, he said ‘I don’t want you’. I then asked ‘Do you have any reason for that?’ and he said ‘It is because of your illness’. I withdrew myself easily because of my illness (P18). The participants had also requested their husbands to remarry; this request was raised by the female participants themselves or their relatives. The female participants did so because they thought they couldn’t afford to do daily tasks and would have problems with pregnancy; they were also anxious for the future of their spouse. Actually, I had decided about this issue and talked to my husband about it. I told him that it was not a problem for me, and that he could remarry because I thought it was better for me that way (P11). On the other hand, some of the female participants noted that the request for remarriage was raised with their husbands by their families, because they thought that the female patients would not be able to perform their tasks in the future. This caused the participants unhappiness, resulting in their trying to perform all of their tasks by themselves, despite the illness symptoms. Another problem that participants experienced was that marital wishes were ignored in the pursuit of illness-related problems. On one hand, the MS patients refrained from raising their wishes due to weakness, and on the other, their family members ignored their wishes due to the problems resulting from their care. An example: Others think I don’t like children. I tell him (my husband) that it is for you that I say no; I don’t like it because I don’t want you to become unhappy, otherwise, each woman wants to have children. All this is for you (F1).
323
Concern about job Concern about work was another social dimension of the illness. Those individuals who were searching for work faced problems with employment and with not admitting they were MS patients, whereas employed participants were also concerned about maintaining or losing their jobs due to their illness. One of the concerns for job selection pertained to the problems in obtaining employment. Participants noted that as soon as they announced the name of their illness, they would confront employment problems, with the employers hiring applicants who were not sick. Some participants noted that this problem arose due to lack of awareness about the illness. On the other hand, some participants had confronted limitations in job selection due to their illness symptoms. Unfortunately, a very severe and major problem for our young, sick sons is that, though they are well educated, they don’t have any job. One of the patients said ‘Wherever I go and mention I have MS, they don’t accept me or grant me any job’ (H2). The fear of losing their current job in the future due to illness symptoms such as fatigue, speaking or visual disorders was another of the concerns of participants. He just began to say ‘I would be afraid of stuttering’. He is very sensitive about his job, and has done his best to fully use his potential and finish his class (F2). Most of the participants preferred to conceal their illness in their working environment, due to their fear of losing their jobs. This is, in part, due to the wrong attitude of employers about the potential of individuals with MS, and the participants experienced an excessive pressure not to lose their jobs. On the other hand, some participants who had announced their illness in their working environments complained of misunderstanding and lack of support from others. I was working in a hospital, and they didn’t have the correct understanding of my situation. They didn’t permit me to rest even for a while; when I finished working, my colleagues would expect me to help them, and if I sat down, they looked daggers at me (expertise dialogue of members in MS Centre site).
Discussion The participants in this study had been confronted with stigma symbols. They experienced stigma following the misinformed behaviour of people, including unreasonable, compassionate attitude and praying to God for their cure. Unreasonable, compassionate and merciful attitude of people was a factor in their feeling helpless and weak. Such experiences of social stigma were also noted by the patients and their caregivers in a study conducted by Rivera-Navarro on the social dimensions of MS, the patients noted that they were worried about overprotection, and believed that it only helped them to a very small extent [29]. In yet another study conducted by Bruno, one of the factors that resulted in stigma for the individuals with epilepsy was found to be the merciful attitude of people in society [30]. Studies carried out by Chanzanagh et al. [31], Moneyham [32], Moses [33] and Masnari [34] showed that pity was a stigma symbol for the patients. Praying to God for the cure of the participants in the current study was considered a stigma factor as well. This is because, it resulted in the participants’ feeling incapable of doing anything, and assuming that they have been afflicted with an incurable and
324
S. Abolhassani et al.
devastating illness, necessitating that others pray to God for their cure. This was followed by people staring at them, which also caused anxiety to the participants. In Islam, prayer has an important role in the cure of disease [35]. From Islamic perspective, God is aware of all, including every one of his servants; God is the cause of everything and is capable of freeing his servants from disease and problems. Staring at individuals with facial complications, according to the study carried out by Masaneri [34], or just staring and looking attentively at individuals, according to Chanzanagh’s study [31], caused the experience of stigma, and was hence considered as stigma. Among other issues the participants had confronted was a gigantic impression of MS in the minds of people. They also believed that people had a bad attitude towards MS and a lack of proper awareness regarding the illness. The participants noted that people in society were of the opinion that MS was equivalent to disability and dependence on wheelchair; this perception was one of the reasons for the participants’ anxiety. Moreover, a study conducted by Jacobi et al. on the awareness and attitudes of people in society with respect to epilepsy indicated that some people had an incorrect attitude towards the disorder. They believed that people with epilepsy had more personality problems than do those without [36]. Participants of the current study considered that wrong information and incorrect depiction of MS by mass media were factors that contributed to stigma. Similarly, the study conducted by Klin indicated that mass media caused stigma for the patients with mental disorders by providing wrong information or magnifying the problem [37]. The experience of stigma by participants had consequences for them. The participants felt anxiety following the misinformed behaviour of people and misrecognition of MS. On the other hand, some participants who had concealed their illness were always worried about its accidental revelation; this anxiety prevented them from being around other MS patients, due to their fear of being seen by one of their relatives. Another cause of anxiety was worry regarding the relapse of MS on occasions that the participants spent with their friends and relatives, such as New Year vacations or marriage ceremonies, due to the unanticipated nature of the illness. This is in accordance with the results of the study carried out by Stutterheim et al., which indicated that the stigma related to HIV caused psychological stress to infected individuals, and that the three demonstrations of stigma, including avoidance, exaggerated kindness and requests to hide diagnosis, are strongly related to the psychological distress of the infected individuals [38]. Participants used coping mechanisms such as concealment, solitude and avoiding services. They tried to conceal their illness from others, even close friends and relatives. Such concealment, in turn, created problems such as lack of understanding of the participants’ situation in their working environment or among relatives; the same things continued to be expected from the participants as before, but the participant could no longer meet those expectations due to illness symptoms, which were typically not obvious to other people. Despite this drawback, the participants preferred to avoid illness-related stigma by this approach. In general, patients use different methods for coping with illness-associated stigma [39]. One such method involves the decision to either disclose his/her illness and suffer from the resulting stigma, or conceal it to avoid stigma. In the study carried out by Kilinc, epilepsy patients had concealed their illness, because of its non-obvious nature, to avoid the illness-related stigma; on the other hand, when they experienced the negative effects of concealment, especially during epileptic attacks, they now attempted to reveal their diagnosis [40]. For most
Disabil Rehabil, 2015; 37(4): 319–326
participants who experience stigma, there is a paradox involved in either concealing or revealing the diagnosis; the patient must choose between concealing the diagnosis and not benefiting from others’ help and services, or reveal the disease diagnosis, thereby using the available services but also experiencing stigma. Solitude was another coping mechanism for avoiding stigma, with the participants not presenting themselves in society. A study carried out by Bedini about perceived stigma and participation in social recreations by individuals with disability indicated that some participants tried to avoid taking part in these activities to conceal their disability and avoid experiencing stigma [41]. The study carried out by Varas-Diaz showed that one of the consequences of stigma associated with AIDS was isolation [42]. Another social aspect of MS faced by the participants of the current study included marriage-related problems. Participants were anxious about possible problems in married life due to unknown illness prognosis; for this reason, they were afraid of marriage. On the other hand, some participants had concealed their disease diagnosis during marriage due to fear of the other party’s withdrawal; this, in turn, caused psychological burden for the spouse and feelings of failure. The possibility of divorce was raised for those participants whose illness was diagnosed after marriage; this was a factor causing anxiety to these participants, prompting some female participants to suggest that their husbands remarry. This was because these female participants thought that they lacked the ability to live a normal life, and would confront problems in childbearing and performing their tasks. On the other hand, fear of spousal remarriage was also among the factors causing anxiety to female participants. Family is an important institution in Iran, such that identification of Iranian society is not possible without identification of families [21]. Islam places great emphasis on family. Marriage among Muslims is based on mutual interest and devotion. According to Islamic tradition, marriage is essential [43]. Sexuality in Iran is influenced by social, cultural and religious beliefs, and is permitted only within a marriage; sexuality outside of marriage is a taboo [44]. Considering that marriage is the basis for establishing families in Iranian culture and thus, for the development of a legal and successful society, the incidence of problems with married life due to illness potentially affects the social life of patients. The study carried out by Pfleger on the continuation of married life for individuals with MS indicated that the probability of divorce increased after disease diagnosis. According to this study, the probability of maintaining their marriage 5 years post-diagnosis was 86% in the patient group compared to 89% in the control group, as opposed to 33% versus 53% 24 years later [45]. Yet another social dimension of MS included employment of the participants. Maintaining the present job was among the concerns of individuals with MS. According to a study by Pfleger, the rate of employment loss for MS patients 5 and 20 years postdiagnosis was 70% and 22%, respectively [46]. In another study by Hakim, it was shown that 53% of MS patients had lost their jobs after illness diagnosis [47]. The studies by Morales-Gonzales on individuals with MS [48] and McCabe, on individuals with neurological disorders [49], also showed that the employment rates of afflicted individuals decreased after disease diagnosis. In the current study, participants who proceeded for first-time employment noted that they would confront problems by revealing the diagnosis, and that concealing the disease was a better option. In a study by Johnsons, the participants noted that they had concealed their diagnosis because of the reactions of other individuals in their working environment [50]. Other studies, including those by Rivera-Navarro [29], Fragso [51] and
DOI: 10.3109/09638288.2014.918192
Julian [52] indicated that reduced opportunities for obtaining employment was one of the social problems faced by MS patients.
Conclusions The results of this study highlight that it is necessary for authorities, policy makers, mass media and service providers for patients to amend MS-related awareness and information; this can be accomplished by offering proper information to the patients, their family and people in society, so that the social problems experienced by the patients can be reduced. This information could be about nature of disease, types of disease course, its controllability with treatment, not equalizing MS with disability and dependence and correct dealing with patients. This information could be delivered by social media such as radio, TV, newspapers, internet, etc., by different methods such as depiction documentary films of successful patients or interviewing with health care providers about the disease, its management and care. The experience of social problems can be a stress factor, causing psychological problems for the patients and their families, while also affecting the coping mechanism of patients, leading them to embrace wrong coping mechanisms. In addition, psychological problems, arising as a result of these social problems, can eclipse the progress and control trend of the illness. Therefore, it is necessary to provide psychological support to patients and their families, and reinforce their coping skills to help them cope with this disease and its social impact, and finally, promote self-worth and self-esteem.
Acknowledgements The authors would like to thank the individuals with MS, their family members and health care providers who participated in this study.
Declaration of interest The authors report no declarations of interest. This work was supported by the Isfahan University of medical sciences.
References 1. Zwibel H. Health and quality of life in patients with relapsing multiple sclerosis: making the intangible tangible. J Neurol Sci 2009;287:S11–16. 2. Motl RW, Suh Y, Weikert M. Symptom cluster and quality of life in multiple sclerosis. J Pain Symptom Man 2010;39:1025–32. 3. Hickey JV. The clinical practice of neurological & neurosurgical nursing, 6th ed. Philadelphia (PA): Wolters Kluwer/Lippincott Williams & Wilkins; 2009. 4. Sahraian MA, Khorramnia S, Ebrahim MM, et al. Multiple sclerosis in Iran: a demographic study of 8000 patients and changes over time. Eur Neurol 2010;64:331–6. 5. Etemadifar M, Janghorbani M, Shaygannejad V, Ashtari F. Prevalence of multiple sclerosis in Isfahan, Iran. Neuroepidemiology 2006;27: 39–44. 6. Etemadifar M, Maghzi AH. Sharp increase in the incidence and prevalence of multiple sclerosis in Isfahan, Iran. Mult Scler 2011;17: 1022–7. 7. Dunn J. Impact of mobility impairment on the burden of caregiving in individuals with multiple sclerosis. Expert Rev Pharmacoecon Outcomes Res 2010;10:433–40. 8. Halper J. The psychosocial effect of multiple sclerosis: the impact of relapses. J Neurol Sci 2007;256:S34–8. 9. Lima MG, Barros MB, Ce´sar CL, et al. Impact of chronic disease on quality of life among the elderly in the state of Sa˜o Paulo, Brazil: a population-based study. Revista Panamericana de Salud Pu´blica 2009;25:314–21. 10. Heijmans M, Rijken M, Foets M, et al. The stress of being chronically ill: from disease-specific to task-specific aspects. J Behav Med 2004;27:255–71.
Social aspects of multiple sclerosis
325
11. Jennum P, Wanscher B, Frederiksen J, Kjellberg J. The socioeconomic consequences of multiple sclerosis: a controlled national study. Eur Neuropsychopharmacol 2012;22:36–43. 12. Mohr DC, Dick LP, Russo D, et al. The psychosocial impact of multiple sclerosis: exploring the patient’s perspective. Health Psychol 1999;18:376–82. 13. Ghaem H, Borhani Haghighi A. The impact of disability, fatigue and sleep quality on the quality of life in multiple sclerosis. Ann Indian Acad Neurol 2008;11:236–41. 14. Pakpour AH, Yekaninejad MS, Mohammadi NK, et al. Healthrelated quality of life in Iranian patients with multiple sclerosis: a cross-cultural study. Neurol Neurochir Pol 2009;43:517–26. 15. Aymerich M, Guillamon I, Jovell AJ. Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe). Patient Prefer Adhere 2009;3:311–21. 16. Miller A, Dishon S. Health-related quality of life in multiple sclerosis: the impact of disability, gender and employment status. Qual Life Res 2006;15:259–71. 17. McCabe MP, McKern S. Quality of life and multiple sclerosis: comparison between people with multiple sclerosis and people from the general population. J Clin Psychol Med Sett 2002;9:287–95. 18. Einarsson U, Gottberg K, Fredrikson S, et al. Activities of daily living and social activities in people with multiple sclerosis in Stockholm County. Clin Rehabil 2006;20:543–51. 19. Iran statistic center. General population and housing census 2011. Available from: www.Amar.Org.ir. 20. Chatters LM. Religion and health: public health research and practice. Ann Rev Publ Health 2000;21:335–67. 21. Azadarmaki T, Bahar M. Families in Iran: changes, challenges and future. J Comparat Family Stud 2006;37:589–608. 22. Crowe S, Cresswell K, Robertson A, et al. The case study approach. BMC Med Res Methodol 2011;11:100–8. 23. Tufford L, Newman P. Bracketing in qualitative research. Qualit Soc Work 2012;11:80–96. 24. Grbich C. Qualitative data analysis: an introduction. Los Angeles: Sage publication; 2012. 25. Elo S, Kynga¨s H. The qualitative content analysis process. J Adv Nurs 2008;62:107–15. 26. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qualit Health Res 2005;15:1277–88. 27. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004;24:105–12. 28. Weiss MG, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions 1. Psychol Health Med 2006; 11:277–87. 29. Rivera-Navarro J, Morales-Gonza´lez JM, Benito-Leo´n J, Mitchell AJ. The social and familial dimension: experiences of caregivers and people with multiple sclerosis. The GEDMA study]. Revista de Neurologia 2008;47:281–5. 30. Bruno E, Bartoloni A, Sofia V, et al. Epilepsy-associated stigma in Bolivia: a community-based study among the Guarani population: an international league against epilepsy/international bureau for epilepsy/world health organization global campaign against epilepsy regional project. Epilep Behav 2012;25:131–6. 31. Chanzanagh HE, Piri A, Garjan EA. The disabled and their everyday life exoeriences in iranian culture. Int J Soc Sci Human Stud 2012;4: 175–84. 32. Moneyham L, Seals B, Demi A, et al. Perceptions of stigma in women infected with HIV. AIDS Patient Care STDs 1996;10:162–7. 33. Moses T. Being treated differently: stigma experiences with family, peers, and school staff among adolescents with mental health disorders. Soc Sci Med 2006;70:985–93. 34. Masnari O, Landolt MA, Roessler J, et al. Self-and parent-perceived stigmatisation in children and adolescents with congenital or acquired facial differences. J Plastic, Reconstruct Aesthet Surg 2012;65:1664–70. 35. Javaheri F. Prayer healing: an experiential description of Iranian prayer healing. J Rel Health 2006;45:171–82. 36. Jacoby A, Gorry J, Gamble C, Baker GA. Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia 2004;45:1405–15. 37. Klin A, Lemish D. Mental disorders stigma in the media: review of studies on production, content, and influences. J Health Commun 2008;13:434–49.
326
S. Abolhassani et al.
38. Stutterheim SE, Pryor JB, Bos AE, et al. HIV-related stigma and psychological distress: the harmful effects of specific stigma manifestations in various social settings. AIDS 2009;23:2353–7. 39. Joachim G, Acorn S. Stigma of visible and invisible chronic conditions. J Adv Nurs 2000;32:243–8. 40. Kilinc¸ S, Campbell C. ‘‘It shouldn’t be something that’s evil, it should be talked about’’: a phenomenological approach to epilepsy and stigma. Seizure: J Brit Epilepsy Assoc 2009;18:665–71. 41. Bedini LA. ‘‘Just sit down so we can talk:’’ perceived stigma and community recreation pursuits of people with disabilities. Therapeut Recreat J 2000;34:55–68. 42. Varas-Diaz N, Serrano-Garcia I, Toro-Alfonso J. AIDS-related stigma and social interaction: Puerto Ricans living with HIV/AIDS. Qualitat Health Res 2005;15:169–87. 43. Mutahhari M. Sexual ethics in Islam and in the Western world. ICAS Press. Foreign Department of Bethat Foundation; 2011. 44. Aghajanian A. Family and family change in Iran. Fayetteville (NC): Department of Sociology Fayetteville State University; 2001. 45. Pfleger CCH, Flachs EM, Koch-Henriksen N. Social consequences of multiple sclerosis (1): early pension and temporary unemployment—a historical prospective cohort study. Multiple Scler 2010;16: 121–6.
Disabil Rehabil, 2015; 37(4): 319–326
46. Pfleger C, Flachs E, Koch-Henriksen N. Social consequences of multiple sclerosis. Part 2. Divorce and separation: a historical prospective cohort study. Multiple Scler 2010;16:878–82. 47. Hakim AB, Bryant TN, Roberts MWH, et al. The social impact of multiple sclerosis-a study of 305 patients and their relatives. Disabil Rehabil 2000;22:288–93. 48. Morales-Gonzales JM, Benito-Leon J, Rivera-Navarro J, Mitchell AJ; GEMDA Study Group. A systematic approach to analyse health related quality of life in multiple sclerosis: the GEMDA study. Mult Scler 2004;10:47–54. 49. McCabe MP, Roberts C, Firth L. Work and recreational changes among people with neurological illness and their caregivers. Disabil Rehabil 2008;3:600–10. 50. Johnson KL, Yorkston KM, Klasner ER, et al. The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis. Archiv Phys Med Rehabil 2004;85:201–9. 51. Fragoso YD, Finkelsztejn A, Giacomo MCB, et al. The effect of multiple sclerosis on the professional life of a group of Brazilian patients. Arquivos de neuro-psiquiatria 2010;68:914–17. 52. Julian LJ, Vella L, Vollmer T, et al. Employment in multiple sclerosis. J Neurol 2008;255:1354–60.
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
