Practice Points
- People with multiple sclerosis report that even minor word-finding difficulties, which may manifest as substitutions or prolonged pauses
for search, can impact their ability to engage in everyday communication. - Referral to a speech-language pathologist for assessment and treatment of communication disorders can be beneficial.
- The context and communication partner’s behavior can both impede and facilitate communication in cases of word-finding difficulties. A calm environment and allowing sufficient time to articulate one’s thoughts, as well as explicitly offering assistance in word search, may often be helpful.
Due to disease-related impairments, people with multiple sclerosis (MS) may experience communication challenges, including difficulty speaking clearly and understanding and using language.1-8 In survey studies, 60% to 75% of people with MS reported some form of communicative change.3,6-7 The most reported change was word-finding, which is seemingly common even early in the disease course.2 Anomia is defined as difficulty in rapidly retrieving words from long-term memory, independent of an individual’s ability to plan and program articulatory movements or motor execution.9 In conversations, the symptoms can manifest as long pauses while searching for a word, word substitutions, and circumlocutions while attempting to describe the target word. People with MS have been shown to have difficulties with producing adequate words in both naming tests and word fluency tests.10-14 However, word-finding difficulties in MS are often mild and may not always be apparent in naming tests or to conversation partners. There is often a low correlation between subjective self-ratings and results from formal objective measures of word-finding and general cognition.1,10,15
Much of what we know about communication in MS is based on experimental studies and survey data, and focuses on communication difficulties in general.2-8,10-15 The communicative changes are described as negatively impacting psychological well-being, interpersonal relationships, and participation and identity in work contexts and higher academic education, although people with MS have reported being able to use different functional communicative strategies.
It is acknowledged that people with MS contribute valuable information regarding their specific conditions.16 Qualitative research methods are used to understand people’s experiences, thoughts, and perceptions of different phenomena, and impaired communication has been explored in a few qualitative interview studies with people with MS.17-20 Besides effects from fatigue, they have described subtle language changes and how these are the source of frustration, loss of confidence, fear of the future, and difficulties in completing work tasks and maintaining employment. They also describe substantial unmet wants and needs when it comes to management of communication difficulties within the context of health care.18
Thus, although the experience of general communicative changes in people with MS has been explored, word-finding difficulties have not been studied from the patient perspective. The present study aims to investigate the subjective experience of word-finding difficulties in people with MS by asking the participants about their experiences of word-finding difficulty in everyday life, and to describe how they cope with those difficulties.
Methods
In this study, semistructured interviews were analyzed via qualitative content analysis, as described by Graneheim and Lundman.21 The study was approved by the Regional Ethical Board of Gothenburg in Sweden (reference number 506-16). All participants signed informed consent prior
to participation.
Participants
Eighteen people were included before saturation was reached, that is, when no new knowledge could be discerned from additional interviews.22 The participants were a purposeful sample of people with MS in Sweden recruited via the Neurological Association and speech-language pathology clinics (Table 1).
Inclusion criteria were: MS diagnosis documented in their medical record, no other known neurological disease or injury, Swedish as their native language, good or corrected vision and hearing, and experience with subjective word-finding difficulty.
The participants were fifteen women and 3 men with a mean age of 53.2 years (range, 30-72). Seven of them completed high school, and 11 had received more education. The sample included participants with relapsing-remitting MS (n = 8), primary progressive MS (n = 2), and secondary progressive MS (n = 8).
Procedure
Six speech-language pathologists performed the interviews in quiet rooms at a clinic, a patient association facility, the local university, or in participants' homes. A semistructured interview guide was used (Table 2), and the interviewers were instructed to give the participants open-ended questions and allow time for exhaustive answers before presenting follow-up questions. The interviewers could also provide suggestions, based on earlier research on word-finding difficulties, when needed.The interviews ranged in length from 5:45 minutes to 24:13 minutes.
The Swedish version of the Object and Action Naming Battery (OANB), including 120 pictures of high-frequency objects and actions, was given immediately after the interview.23
The interviews were transcribed orthographically. Pauses, hesitations, repetitions, and nonverbal communication were included to assist the analysis.
Analysis
The transcriptions were checked against the video-recorded interviews by the authors and revised if needed. Meaning units containing words, sentences, and phrases that related to the research questions were extracted from each of the transcribed interviews. This was followed by condensing each meaning unit into shorter, concentrated phrases of the core meaning. The condensed phrases were then abstracted into codes, as this could reveal new patterns.21,24 A single code may describe and/or be assigned to several condensations from different interviews. The coded content was then further abstracted into categories. Each meaning unit was assigned to one of the categories. The second and third authors (C.G., F.V.E.) did an initial coding and categorization of the material. Codes and categories were then discussed by all authors and sometimes altered in a consensus procedure. During the process, all authors repeatedly discussed the results, and great care was taken to preserve the context and meaning of the interpreted content.
Results
Fourteen participants performed within normal variation for their age group on the naming ability test, but most participants endorsed that word-finding difficulties affected their everyday communication. One participant said that the word-finding difficulty did not really cause any problems in everyday life, and 3 participants said they only experienced minor communication problems despite their reported word-finding difficulties. These 4 participants were not distinguished from the others in terms of their naming ability level, age, MS type, or disease duration. There was also no relationship among the results, demographic factors, MS type, or disease duration in those who scored below normal on the naming test.
Three overarching categories, or themes, emerged in the analysis: (1) word-finding difficulty affects everyday life; (2) these word-finding difficulties may be handled in various ways; and (3) certain factors can facilitate or hinder word-finding. Within these overarching categories, 22 subcategories were identified (Figure).
We describe the categories with quotes from the interviewees. They have been translated into English, punctuation has been added, and hesitations and other signs of speech-planning have been removed to facilitate reading. Words left out within a quote are marked with brackets.
Word-Finding Difficulty Affects Everyday Life
The first overarching category describes participants’ experiences of word-finding difficulties manifesting in their everyday lives.
Varying Degrees of Accessibility
Some participants described the word-finding process as slower or temporarily halted, although the right words would come after a while; others sometimes found the intended words totally inaccessible. “I know so well what I want to say to you, but it is difficult to formulate. I mean, it will be difficult for me to formulate the words so that it matches what I want to say”(P14). They also described how parts of the word could be available but not the whole word. “Strangely enough, I usually know what the first letter of the word is” (P17).
Nuances in Language Use May Be Affected
Both high-frequency words and more unusual words could be difficult to find, hindering participants’ use of particular words to capture the nuances of what they wanted to express. They also described word-finding difficulties as preventing them from using language in the way they used to. “…My previous [way of] speaking [was] a little more correct Swedish. I am no longer [the] word police” (P8).
Word-Finding Difficulties Are Unpredictable
Any type of word could be difficult to find, and this could occur in any type of situation. “It can be any situation, it can be a quiet, peaceful breakfast, or it can be that I enter a room and have to get ahold of a person and explain something” (P9). The difficulties could arise suddenly and at different times of the day, but were not present all the time. For some participants, this did not even occur every day. The words intended could suddenly be replaced with more or less related words, as this participant explained: “We might be talking about something we’re doing in the kitchen, cooking, and then I might say: ‘We should get a frying pan.’ But I mean a slow cooker or...now I said it wrong, or a saucepan, and I get things mixed up. I do know what they are” (P10). Sometimes a word can be involuntarily replaced by a completely unrelated word, which might be noticed by the communication partner: “It can be something that is very wrong…because I know that people have reacted to that: ‘Huh, what did you say?’” (P7). Participants also wanted a way to get rid of the involuntary word substitutions. “The thing I would most like to get rid of is the fact that totally wrong words may jump out”(P9).
Misunderstandings Can Arise
Misunderstandings can occur because of word-finding difficulties. Participants described a desire for improved communication ability to avoid offending, insulting, or hurting someone because of word-finding difficulties. “I find it difficult to find words that fit, so I can be afraid that I [will] tread on someone’s toes”(P12). Participants were also worried that others would misinterpret symptoms of word-finding difficulties as attempts to say something funny and that being quiet in conversations due to word-finding difficulties could be interpreted as a lack of interest.
Searching for Words Takes a Lot of Energy
Word-finding difficulties took energy that could have been used to cope with other aspects of daily life, for example, the family. Participants also described how word-finding difficulties made work more laborious and energy-consuming. “You have to kind of stop and then you have to, yes, find the words, and it takes so much energy from what you still need to use energy to cope with, like the work and things like that” (P3).
Changed as a Communicator
Most of the participants had experienced changes in how they communicated and the context in which they socialized. Participants described how they expressed themselves differently than before: not with the same wit, not as spontaneous, not as quick in discussions, not with the same self-poise or rhetorical ability as before. Many felt that they had become more withdrawn. “The consequence is that you are a little more reserved, a little quieter. You’re not really so talkative or you don’t speak up in the same way” (P17). The fact that an intended word could sometimes unexpectedly be replaced by another (perhaps totally unrelated) word meant that participants chose not to make verbal jokes as much as they did before: “…because…funny or strange things [come] out of my mouth without me wanting it”(P18). Their wish was for a treatment that could make them more social and able to participate more.
Feelings of Frustration
The change in word-finding ability was described as frustrating. Several participants reported that not only did they experience frustration, but their family members did as well. A treatment for improved word-finding ability “would save a lot of time (participant laughs) most of all, and create less frustration in myself, sometimes in others, too, maybe” (P6).
Word-Finding Does Not Have to Be a Big Problem
A few participants described their word-finding difficulties as a minor concern. As one put it: “At the moment, it doesn’t bother me much not find[ing] the words” (P5).
Word-Finding Difficulties May Be Handled in Various Ways
The second overarching category concerns the different ways participants reported coping with everyday life in situations where they could not find the right words.
Try Stubbornly or Give Up
Some described word searching as a matter of self-esteem.“I try to muddle through because if I give up, then I think you break down as a person, or that you don’t feel good about yourself”(P10). However, several participants said they fell silent or gave up and changed the subject when they could not find the right word. Some also choose not to contribute to conversations because of word-finding difficulties. “I have a very effective way and that is to be quiet, actually, and avoid the situation” (P14). Whether some participants gave up trying to find a word also depended on the importance of what they wanted to express. “I have to, or I say: ‘Shit, whatever.’ It depends on what it is. If it’s something important, I must try” (P8).
Acceptance and Openness as a Strategy
Some participants had come to terms with the fact that they sometimes got stuck. The speakers and conversation partners mostly accepted the problems in conversation. “There’s not so much to do about it. I think most people I socialize with accept [it] a little, that you have a bit of a stammer sometimes. There’s nothing more to it, or there’s nothing to hide either, is [there]?” (P16). Being open about their difficulties was something that participants did in different ways. “If I have to talk to someone and then I realize that this is not working, then I tell them: ‘Yes, but you know, I do have MS and I have a bit of difficulty finding the words.’ And then I start over again” (P9). Others had a hard time accepting the impaired ability to express themselves.“I have trouble finding words, and I guess I put myself down more because I know I was on such a high level before” (P8).
Preparing for Communication
Participants mentioned that preparation could facilitate communication during formal situations. “Before I can say that, when going to the doctor or somewhere else, I would try to remember what I should say, but nowadays…the last 10 years, I write it down beforehand on a piece of paper I can bring, so I know that I can say what I want to get across” (P5).
Involving the Conversation Partner in the Word Search
The conversation partners were often described as resources in the word search, sometimes being invited to guess or even expected to fill in the missing words. “Sometimes I ask for help, especially [with] my close ones, so to speak.Or they say it before [I do] because they know what I am looking for” (P13). On the other hand, when conversation partners completed sentences or guessed words without being invited, it was not always appreciated.
Adapted Language Use
Several participants managed by using synonyms or other related words, sometimes in another language, when the intended word could not be retrieved. They also attempted to describe the missing word or use circumlocution. Less important words were also eliminated, and names were sometimes replaced with pronouns. Language was occasionally adapted in an unwanted way. “I probably back off in some way and use a more everyday word or simpler word, even though I really want to use a more difficult word, because I think it’s important to have a vocabulary. I think it’s important to use good language, but when I don’t have the energy, then I probably back off a bit, and it becomes simpler in some way, simpler words” (P3).
Protection From Negative Feelings
Participants described how they would often laugh and smooth over the problem when they needed help finding words. “Sometimes you just laugh about it, like: ‘Yeah, right, that’s it.’ So you’re always trying to find some shield, to sort of hide it” (P15). They also tried to blame something other than MS for the problems, like age or just not keeping up, to distance themselves from the negative effects of the disease.
Using Time as a Strategy
The need for time to find the right words and different approaches to gain time were often mentioned. One participant said that he would act thoughtful or reflective to gain time in conversations, whereas another participant described using filler words: “Either there are no words, or there are a lot of ‘and’ and ‘but’ and ‘ay’ and ‘ugh’ and, I mean these words that I try to use to have time to formulate what I want to say” (P14).
Use of Alternative Communication Means
Use of body language, such as gestures, was mentioned. Pointing could be used as a means of asking for something or for getting a conversation partner to fill in words. Others described using body language as a natural part of their communication but not a conscious strategy. A few participants acknowledged sometimes using drawing or writing to help with finding a word.
Certain Factors Can Facilitate or Hinder Word-Finding
The third overarching category includes factors that participants perceived as affecting their ability to find words.
Health-Related Factors and Variations During the Day
The participants in this study reported that sleeping difficulties and pain affected word-finding.The time of day could also determine how much word-finding difficulties interfered. "In general, when I’m alert, and I’m usually alert in the morning, I don’t think much about it, but…[it occurs later] during the day when I’m more tired” (P3). Word-finding was particularly difficult when participants were tired, taking longer and resulting in a more limited vocabulary.
Feelings and Emotions as a Factor
Word-finding difficulties could become worse when participants were angry, happy, frustrated, or excited. State of mind could also affect how participants felt about word-finding difficulties. “When I’m angry or frustrated, then it is present, but not so much if I’m happy, I think. I probably don’t notice it in those cases, and if I’m happy, then I’m probably in such a state of mind that it perhaps doesn’t bother me anyway” (P8). Being keen to express something or being frustrated about not finding words could increase the difficulties.
Contextual Requirements Vary
Participants found that context could influence word-finding or how the difficulties were handled. One’s own or others’ expectations could also affect the willingness to try to express oneself. “If I can’t do it the way you expect me to, then I feel that I might as well be quiet” (P17). Contexts where the choice of words could be critical, like discussions, were described as especially difficult.
Conversation Partner Matters
For some participants, it did not matter whether they were talking to just 1 person or a group of people, but others felt that group conversations were really challenging. “Even though I’m good at babbling on, this situation, when you have to fight to get an opportunity to speak and feel a bit stressed that you have to get something out, to lose your words in that context [is difficult]” (P7). In group conversations, the need for more time to find words could be an issue because when the person finally found the words to contribute, the topic had already changed. Speaking with strangers was described as more stressful because people who know the person with MS well could be a resource. “Most of the time we probably find out, at least if talking to my husband, what it is I want to say” (P9). Not finding the words when the conversation partner seemed impatient was also described as stressful.
Impact of Sensory Impressions
Being in situations with a lot of noise, such as cafés, was described as hampering word-finding. “If there are a lot of disruptive elements around, there can be so much noise and children screaming and so on, then I think I…then I can’t really talk anymore” (P17).
Stress and Time Limitations as Hindering Factors
When participants felt stressed, word-finding was more difficult. “Obviously, if you are stressed, then it is a bit messier so then word choice can get worse.... It is better to take it easy, or in general I think I have become a little less…the stress tolerance has changed” (P16). In general, time was described as an aggravating factor. Feeling that it took too long to express oneself or that others did not have enough time to wait were both difficult situations. A doctor’s appointment was mentioned as an example of a situation made harder due to time limitations.
Discussion
The results of our study show that the participants with MS have both individual and shared experiences of how different degrees and types of word-finding difficulties affect everyday life and how they cope with these difficulties. Many described themselves as changed communicators. Negative effects on communicative participation, working life, and quality of life from changes in communication ability have been reported elsewhere, but results in the current study show these negative effects specifically from the participants’ view of their word-finding difficulties.3-4,6,7,15,20
A pattern of intertwined factors that affect word-finding was described by participants. Health-related factors were mentioned, but temporary ill health was not reported as affecting the level of word-finding difficulty, although this has been reported elsewhere by people with neurogenic communication difficulties.20 Contextual factors like sensory processing load were also mentioned, along with time limitations and the impact of the conversation partner. Communication demands and expectations and emotional impact also were reported to negatively affect word-finding. These factors may be changed to support communication, either by adapting environments—for example, by informing potential conversation partners about possible communication difficulties because of MS—or by working with people of MS to improve their self-image and acceptance of this impairment.18
It has previously been recognized that people with MS may experience communication as variable and unpredictable.3-4,20 In our study, participants also described word-finding difficulties manifesting in unpredictable ways. Any word could prove difficult at any time, or even suddenly be involuntarily replaced by another, sometimes totally unrelated word.
A supportive communication partner who can provide time and help to find words, was described as facilitating communication. Experiences of frustration when family and friends filled in the missing words uninvited, along with feelings of being less competent when not able to find the words themselves, have been reported by people with MS elsewhere.3
As previously described in relation to communication difficulties in general, participants in the current study reported having to use circumlocution and related words to express themselves.3,20 They also changed their communication style by, for example, using simplified or less nuanced language.
In agreement with the findings of a study by El-Wahsh and colleagues, the findings of our study call for support and treatment for word-finding difficulties in MS.18However, people with MS are seldom referred to speech-language pathologists working with the assessment and treatment of communication disorders.7,18 There is also a lack of evidence-based treatment methods for word-finding difficulties in MS.25
This study had several limitations. The interviewers who did the data collection did not participate in the analysis. This kept the interview guide constant throughout the study and may be a shortcoming, as new knowledge gained during the process of conducting the interviews could have prompted a revision of the interview guide.22 Another limitation is that we do not present data on the participants’ physical and cognitive health, which may affect their experiences with word-finding difficulties. Still, there was a broad range in age, time since diagnosis, type of MS, and degree of difficulty among the participants, and this diversity provided different perspectives and contributed to the rich variety of experiences related to word-finding difficulties, increasing the credibility, transferability, and validity of the study.21,24 Participants’ naming ability was assessed with confrontation naming via a set of picture stimuli, which is standard procedure in screening for word-finding difficulties. However, it is clear from the results of this study that such an assessment is not sensitive enough when it comes to the type of communication difficulties seen in MS. Subjective word-finding difficulties in everyday life were an inclusion criterion in the study, yet only 4 participants scored below normal on the test. Further, the few participants who experienced only minor communication problems did not necessarily perform well on the test. Although research has described impaired confrontation naming ability in people with MS, results from other studies suggest that more complex tasks involving basic cognition, such as executive function, are needed to diagnose communication difficulties in those with MS.8,10,15
Conclusions
For people with MS, even minor word-finding difficulties may affect psychological well-being and decrease communicative participation. Evidence-based treatment methods are needed. The outcomes of training people with MS to use strategies to facilitate word-finding or teaching communication partners supportive strategies need to be assessed. The present study contributes new knowledge about the word-finding difficulties people with MS describe and highlights the importance of recognizing and managing these problems within their care.
