Forskningsresultat

Living with Disability – Counseling of Partners in Social Networks
Erik Borg Audiological Research Centre, Örebro University Hospital, Örebro, Sweden
Birgitta Borg Audiological Research Centre, Örebro University Hospital, Örebro Sweden
Abstract
Purpose: To evaluate the effects of the EC program in audiological rehabilitation aimed at increasing the ability of the person with hearing impairment (HI) to coach/counsel the communication partners by working with empathy (E), empowerment (E), competence (C) and counseling (C). Method: Study circles consisting of 7-8 meetings and involving about 8 participants. The evaluation was made from 4 months to 6 years post-training in three groups with 38 (Study 1), 10 (Study 2) and 9 (Study 3) participants, respectively. Questionnaires with fixed alternatives or open-ended responses were used. Results: Study 1: Participants’ knowledge of how their HI influenced others increased (p=0.008), they were more likely (p=0.045) to lead the group to a less noisy place in a cafe and less likely to join a group and merely try to follow the conversation (p= 0.003). They met and talked significantly more often with their normal hearing schoolmates (p = 0.029). Study 2 and 3: They found the EC program tools (films, Hear-Right, CARD, Berne, So it Sounds) helpful when informing others about their own HI. Conclusion: Persons with HI can explain and function as counselors. This skill is likely to be useful for other groups with disabilities/chronic diseases as well.
Introduction
The activities and participation of a person with a disability or a chronic disease usually involve several other persons in different social networks. The knowledge, insight and empathy of these other persons have a great influence on the life quality of the disabled person. A critical issue is how such knowledge and insight should be developed, and to what extent the person with the disability/disease can play a role in this development.
Hearing impairment (HI) can be a model to address these questions. HI leads to a disability with components that make relations to social networks more evident than is the case for most other disabilities. Many aspects of an HI disability depend on and directly involve other persons in the social networks: the communication partners (CPs). Obviously, the person with HI often has limitations when it comes to participating in conversations. Moreover, CPs with normal hearing (NH) or others with HI may fail in their attempts to communicate. They may get no response and no attention, they may not be understood, and may feel ignored when trying to talk with a person with HI. In addition, the CP is not only one person. For most persons with HI, real life involves a large number of CPs, who can be categorized using the concept of “social circles”: the family (first circle), friends, peers (second circle), and occasional contacts (third circle) [1]. The question is: How can knowledge, insight and ability regarding HI be developed in a sufficient
number of CPs when needed? Can the person with HI serve as a mentor/instructor/counselor?
Several other diseases/disabilities have similar demands/conditions, in that the knowledge and actions of others in the immediate surrounding have a direct impact on the health, disability and participation of the person with the disorder. Two examples are diabetes mellitus and chronic bowel disease. In diabetes and chronic bowel disease, informing and influencing the actions and decisions of persons in the first social circle is applied to some extent, and the patient has the role of instructor/counselor/coach in relation to other persons (diabetes: Forlani et al. [2]; bowel disease: Hueppe et al. [3]). In groups of parents of children with cerebral paresis, systematic counseling has been tested in which more experienced parents educate/counsel younger less experienced parents on how to support their children [4].
Systematic training intended to help the person with a functional disorder or disease become a better counselor for persons in his/her surroundings may have good effects.
In most previous audiological rehabilitation programs, the focus is on the person with HI and the technical aids. Some have training programs involving a CP who is a member of the first social circle, a significant other [5, 6, 7]. The need for extensive information about the consequences of HI in other social circles, e.g. working life, has recently been documented by Hua et al. [8]. Taking a wider view on the circles of CPs in audiological rehabilitation is a challenge. The question that remains is how this information, or counseling, should be provided and by whom. One alternative is to realize that the person with HI can improve the communication results not only by using technical aids or own strategies, but also through active shaping of the communication situation, which involves influencing the milieu and particularly helping the CPs by applying coaching/mentoring/counseling techniques. This has been the goal of a recent development in audiological rehabilitation [9], and it may also have implications for other fields of disability/chronic disease.
In designing and evaluating rehabilitation programs for persons with HI, the ecological framework [10, 11] can be used as a starting point. The model has three components (the individual with HI, the physical environment and the interacting CPs) and the three levels of interaction (signal, language and behavior). Each component and process can be changed or adjusted to keep the system in balance to maintain the desired/preferred state: the preferendum. The desired optimum is not
fixed but can be adjusted, corresponding to an internal coping process. A global evaluation of the state of the communication system is obtained by assessing the “communicative mass” with its three dimensions: the intellectual and emotional values of the communication, and the number of partners, i.e. the size of the social networks/circles, all of which are related to individual preferences. The focus in the present article is on the interaction at the behavioral level, that is, on how the partners behave in the communication situation.
A well-functioning balance between needs and demands can be obtained through external and internal actions and adjustments. Improving one’s own hearing and language capacity, influencing the physical environment and helping the CP become a better communication partner are three main methods. The present focus is on the third component – the CP – and on how the person with HI can counsel the CP in dealing with the interaction at the behavioral and, to some extent, the language level. In the final stage, the preferendum of the CP’s identity as communicator is adjusted to a mode that suites a partner with HI.
A new program in audiological habilitation/rehabilitation intended to meet this challenge has been under gradual development in Örebro, Sweden. The first step was taken by Borg et al. [12]. In Version 1, middle-aged men with HI were trained to inform their spouses about their HI and how to manage difficult situations. In Version 2, involving the final year of upper secondary school, students were trained in a study circle aimed at developing knowledge about and insight into their own HI and empathy for the situation of others, as well as counseling skills allowing the student with HI to support the CP in becoming a better CP. At this point, tools were preliminary in nature. Recently Borg and Borg [9] presented the full version, Version 3, and a first evaluation.
The focus is on the counseling (C) role of the person with HI, which is strengthened by actively supporting development of empowerment ( E) and by increasing his/her competence (C) in the area of hearing and HI as well as ability to take the CP’s perspective, i.e., empathy ( E). The pedagogic strategy is called the EC program because it stresses empowerment, empathy, competence and counseling. In the previous article [9], the design of the EC program and its tools were presented together with an evaluation based on the experiences of the hearing therapists in their role as study circle leaders for the participants with HI. The therapists pointed out that the study circle participants (clients) showed more consciousness, responsibility and self-confidence and an increased awareness of the situation of CPs, i.e., more empathy. Several of the EC tools were highly appreciated; the CARD method (Constructive, Act, React, Destructive) for analysis of passed or coming communication situations and the Hear-Right test for deeper insight into one´s own hearing ability in realistic situations were regarded as especially useful. The aim of the EC program is to support the person with HI in changing from being a passive object to being an active subject in the whole communication process. In the current article, further evaluations of the EC program are presented.
Evaluation of rehabilitation programs is methodologically difficult for several reasons. These include the “placebo effect” (the effect of just being taken care of and listened to), the difficulty
of defining outcome variables, the risk for ingratiation (giving an excessively positive evaluation; see, e.g., [6]), and the difficulty of creating equivalent study groups and control groups. The more demanding a program is, the greater the role of motivation and thereby the risk of unbalanced selection of participants. The EC program has a special difficulty in that it allows a great deal of flexibility and contains several tools that can be combined in different constellations, either within the EC framework proper or introduced into other programs.
Furthermore, positive effects can be temporary or more permanent (e.g., [13]). A complete evaluation therefore requires short-term as well as long-term testing. In a review on the effectiveness of counseling and group rehabilitation programs, Hawkins [14] concluded that there was evidence for short-term benefits in handling communication situations, but less clear evidence for the persistence of these positive effects. A stable effect at one-year follow-up was, however, observed by Chisolm et al. [15]. The positive effect of involving spouses in the rehabilitation program was illustrated by Hallberg and Barrenäs [5], and by Preminger and Meeks [16] in a single evaluation after 6 months. A positive effect of the Active Communication Education program at 6 months was shown by Hickson et al. {7].
The focus of the EC program is to develop the ability of the person with HI to support persons in the social networks in their role as CPs in the situation at hand. No established methods for evaluation of EECC abilities has been found. Therefore we have to rely on specially constructed questionnaires used in a previous study [9]. In order to maintain the participants´ focus on the questions relating to EECC, we abstained from using traditional forms for evaluating hearing rehabilitation in a more conventional context.
The aim of the present article is to provide further information about the strengths and weaknesses of the EC program, particularly regarding the counseling functions of the person with HI. The data are based on one short-term evaluation of a group of 38 post-secondary school students (Study 1) and on long-term evaluations of two small groups of young (Study 2) and middle-aged adults (Study 3). All three groups have participated in complete study circles including all tools in the original EC program (Version 3), except for the short-term group (Study 1), which did not see the films (Version 2). In addition, spreading the EC concept to other fields of disability/chronic disease is in focus.
The purpose was to cover several age groups, and short-term as well as long-term follow-up. Participation was voluntary, and a control group was available only in Study 1.
The presentations contain three sections:
Study 1: Post-Secondary school students, short-term evaluation, Örebro (EC program Version 2)
Study 2: Young adults, long-term evaluation, Gothenburg (EC program Version 3)
Study 3: Young to middle-aged adults, long-term evaluation, Stockholm (EC program Version 3)
Ethics. The program has been approved by the Ethics Committee of Örebro (675/97) and by the Ethics Committee of Uppsala (2012/480).
All EC courses were free of charge.
Study 1: Post-Secondary school students, short-term evaluation, Örebro (Version 2)
Material and Methods, Study 1
A questionnaire was distributed to all students (N= 38, median age 19 years, even distribution boys and girls) in the final grade of the upper secondary school for the HI in Örebro (Riksgymnasiet för hörselskadade, RGH) in the spring of 2002. The material contained a study group and a control group. The study group consisted of the 17 students (9 boys and 8 girls) who had followed the seven two-hour meetings in the study circle with Version 2 of the EC program (without the films), and the control group consisted of the 21 students (10 boys and 11 girls) who did not take part in the study circle. There was no random selection. The evaluation was conducted four months after the course, i.e. short-term follow-up.
The questionnaire contained six categories of questions: background (11 questions); knowledge about one’s own hearing (9 questions); habilitation at school (6 questions); strategies in difficult communications situations (7 questions); focus on the communication partner (13 questions); questions focusing on emotional aspects (8 questions). Most questions had 4-5 response alternatives. Parametric (Student´s t-test) and nonparametric statistical methods were used (Mann-Whitney U- test), and are presented in that order in the Results section (ns means not significant).
Results, Study 1
 Before the EC course: The study group compared with the control group
The analysis shows that the study group was less prone to protest or give alternative suggestions than the control group when they were asked to go along to a noisy cafe (ns; p<0.035). Members of the study group socialized less often (ns; p<0.023) with NH schoolmates and rated themselves as being more prone to irritation when with these schoolmates than the control group did.
 After the EC course: The study group compared with the control group
The difference in handling noisy situations in cafes disappeared and irritation when interacting with NH schoolmates decreased in the study group and was no longer significant according to a t-test (p<0.066), but remained in a Mann-Whitney test (p<0.044). The participants in the study group felt their own knowledge on hearing and HI had improved and they reported higher values than the control group (p=0.044; p=0.097).
 Comparison: The control group before and after the EC course
There were no significant differences, but a tendency toward less use of sign language was found (p<0.057; 0.052). There was a tendency toward less tiredness during interaction with HI friends (p<0.056; 0.053) and less irritation during conversations with others with HI (p<0.069; 0.070). (This improvement may be due to the HI schoolmates who had passed the EC course).
 Comparison: The study group before and after the EC course
The HI students felt their own knowledge on hearing and HI had improved (p=0.014; p=0.020), which is compatible with their opinion that they had received more information than previously in school (p=0.024; p=0.029). Their ratings on having information about how their HI influences
others had significantly increased (from 2.86 to 2.0 on a 4-grade scale, where 1 = a great deal; p=0.008; p=0.016).
The routines for how the study group handled difficult situations had also changed. This group was somewhat more likely to visit a less noisy cafe with friends after than before the course (decrease from 3.06 to 2.50 on a 4 grade scale where 1= always; p=0.069; p=0.068). They went along to the suggested cafe, but tried significantly more often to find a quiet place (from 3.06 to 2.38 on a 4 grade scale, where 1=always; p=0.045; 0.048). Joining a group and just trying to follow what was being said had decreased from “often” to between “sometimes” and “seldom” (from 2.41 to 3.12 on a 5-grade scale, where “often” is 2, “sometimes” is 3 and “seldom” is 4; p= 0.003; p=0.008).
They met and talked significantly more often with NH schoolmates at school (p=0.029; 0.035), and there was no longer a difference compared to the control group. There was also a tendency to talk more with NH friends about their HI (p=0.102; 0.104). On the other hand, they were somewhat less enthused and pleased about being with NH schoolmates (p=0.082; 0.083).
An especially interesting observation was the decrease in their evaluation of the knowledge of NH friends outside school about the HI and their understanding of what it means to have an HI (p=0.008). This also resulted in a significant difference compared to the control group, whose evaluation of NH friends’ knowledge was unchanged. The study group rated NH friends’ knowledge as being significantly worse than the control group did (p=0.002; 0.007). A possible interpretation is that the study group´s reference level had increased in accordance with the increase in their own level of knowledge about HI, and that they now talked more with NH schoolmates.
Comments, Study 1
The differences between the study group and the control group may indicate that the control group had more contact with the NH schoolmates, but that this difference disappeared after the EC course, possibly due an increase in competence, empathy and empowerment in the study group. The difference between the two groups may also indicate that the members of the control group had previously been in integrated classes to a higher extent, or that their hearing was better than that of the students in the study group. We have no data to confirm this. There are examples of counseling, e.g. talking with NH friends about their HI and guiding them to a better place in the cafe.
The validity of this evaluation for the final EC program (Version 3) is moderate, because it was conducted before the films were ready. The study circle, however, was accomplished using the same pedagogic design as in the final EC course, and with largely the same tools.
Study 2: Young adults, Gothenburg (Version 3)
Material and Methods, Study 2
The questionnaire was similar to the one in Study 1, but contained more questions about the design of the course. In order to minimize “good will effects” and ingratiation, the enquiries were not sent out in the name of the hearing therapists, but in our names, as we were not involved in the participants’ rehabilitation process.
The questionnaire was sent in 2013 to a group of 20 participants in EC courses given in Gothenburg during the period 2007 to 2011. Ten persons responded, the low response rate likely
caused by the long time to follow-up. Two men and 7 women took part, and one who did not indicate gender; they were between 19 and 32 years at response time, median age 22. The cause and degree of hearing loss varied; one had a cochlear implant, 4 had hearing aids and 5 did not use aids. Seven knew sign language, but only one used it daily. Five had attended a special class for HI during at least part of primary school. The HI was detected before 10 years of age in all but one person, whose HI was likely slowly progressive. One had a visual impairment, used eyeglasses, and one had the diagnosis Asperger’s syndrome. The evaluation was only conducted once after the course, and there was no control group.
The open-ended questions focused on personal experiences of HI, the features and qualities of the EC course and on personal experiences of the EC tools. (The question about the Advisory Message was lost. Present in Borg and Borg, [9]).
Results, Study 2
 Situations with major hearing problems
Examples of responses to the open-ended questions
The same types of situations where NH persons have problems; all social situations: dinners, lunch, parties, when everybody talks at the same time; at long distances; high-pitched sounds; when I’m tired; too slow, quiet talk, poor articulation.
 Communication strategies, after the EC course
Responses to 4-alternative questions: 4: often; 3: sometimes; 2: seldom; 1: never, and I do not know.
7.2. I notice if my communication partner becomes uncertain about whether I can follow the conversation. Responses: Often (0); Sometimes (7); Seldom (0); Never (2); I do not know (0). Average: 2.2; Median: 3.
7.5. I usually tell my communication partners how they should best talk to me so I will have a good chance of hearing what they are saying. Responses: Often (4); Sometimes (5); Seldom (1); Never (0). Average: 3.5; median: 3.
Examples of responses to the open-ended questions
5.11. How should the CPs behave in order to facilitate the conversation?
I try to “own” the situation, and position myself correctly; I point out that I am not haughty and that have a HI; they should walk on my left side, not talk when there is temporary noise, not whisper, check that I have understood; look at me when they talk; maintain eye contact and have patience.
5.12. How do you behave in a communication situation to make your CP change to a better conversation mode?
If I’m uncertain that I heard correctly, I repeat what I believe I heard; I place myself on the right side and point towards my left ear (in order to remind the CP); tell the CPs about my HI, how it functions and about the need for a quiet surrounding; I’m active in the conversation and in the “driver’s seat”; ask them to repeat or to talk louder.
8.1a. When do you tell other persons about your hearing loss?
Three clients say they inform them as soon as possible; One emphasizes that it foremost occurs with persons he/she sees often and trusts; Three say: when I feel it is the right time, or important, e.g. at school or in my work; when the person speaks unclearly, with too little volume or with a voice pitch that is too low; often at the beginning of a conversation.
8.1b. Do you have a special strategy for giving information?
No, it depends on the situation; I tell them that I’m not haughty when I do not respond, I have a hearing loss; I just say that I have a hearing loss in my right ear, and then I respond to questions and try to explain, so I prefer if you can sit/walk on my left side.
8.3a. Do you notice if you have not responded because you (probably) have not heard?
Seven responded: Yes or Often; three: Sometimes; one did not respond.
8.5. Do you have any ideas about how to avoid irritation caused by your difficulties in following conversations in your family or among friends?
Remind about my HI, people often forget; we meet “in the middle”; the others have to adapt and I have to make an effort when I want to talk/discuss a matter, I choose a quiet place; it is not my problem.
 About the EC program
Responses to 4- or 5-alternative questions:
7.10. I feel I have support from what I learned in the EC course when I inform others about my HI, on a scale from 1-4. 4: Often; 3: Sometimes; 2: Seldom; 1: Never.
Responses: Often (2); Sometimes (5); Seldom (1); Never (1), and added that “I already applied the EC method before I participated in the EC course”; I do not know (1). Average: 3.1; Median: 3.
10.1. How much help have you had from the five/six specific tools of the EC program, on a scale from 1-5? 5: A great deal of help; 4: Quite a bit of help; 3: Some help; 2: Nearly no help; 1: No help at all.
The films: Average = 3.3; Median =3.
CARD: Average = 2.2; Median=2.
Hear-Right: Average = 3.3; Median=3.
Berne´s transaction analysis: Average = 2.6; Median=3.
So it Sounds: Average = 2.8; Median=2(3).
Advisory-message (I-message): No data
Examples of responses to open-ended questions
1.1. What do you remember first when you think about your EC course?
The course has helped me a lot; I wished I had taken the course when I was much younger; our discussions and the films in the course; I already knew most of it, but it raised thoughts; good, you learn how to talk about your own HI better; how we should sit in order to hear/be heard; awareness of the importance of small classes and good microphones.
8.1c. Has anything in the EC course made it easier for you to inform others about your HI?
The course has made me more aware of how to explain the HI and how to handle its consequences; I wish I had learned, already as a child, to explain this without fear for shame, or worrying about what others think, and their image of me.
8.6. Has any part of the EC program been useful in informing family and friends about your HI?
Two say: No; one that she already knew; the others found the EC program and the material, e.g. “So it Sounds”, useful; one is planning group information for colleagues and will use the material; one is specific: “Before the EC course I did not inform, now I dare to say something early in a contact. The CARD model has helped me plan how to handle meeting a new contact.”
1.3. Would you recommend the EC course to others with HI?
Both yes and no (1 response); Yes (6 responses); Yes, absolutely (2 responses); Yes everybody with an HI ought to take the EC course (1 response).
Study 3: Young to middle-aged adults, long-term evaluation, Stockholm (Version 3)
Material and Methods, Study 3
Nine young to middle-aged adults (29 to 50 years of age, mean 38.3 years at evaluation) who had passed the EC courses between 2006 and 2009 were evaluated in an inquiry in 2012-2013, i.e. 4-6 years after the course. All respondents were women. One had a mild, four had a moderate and four a severe to profound hearing loss. The HI was detected before 13 years of age in 7 participants, at 30 years in one participant, and another did not know. Seven had a sensorineural loss, and two did not know. All used hearing aids, only one knew sign language, but used it rarely. None had any additional handicap. All had Swedish as their mother tongue.
The questionnaire (the same as in Study 2) was sent to 15 participants, and 9 responded. No baseline investigation was conducted and no control group existed. The question about the Advisory Message was lost.
Results, Study 3
 Situations with major hearing problems
Examples of responses to the open-ended questions
2.8. In what situations do you have difficulties in conversations?
When it is noisy, in a cafe. Underground railway; restaurant, daycare center; railway station; noise, many talkers; lack of visual contact, darkness, distance; telephone conferences; a high stress level in a situation can influence the speaker (rapid talk, poor articulation) and receiver (poor concentration, distraction), causing considerable difficulties.
 Communication strategies after the EC course
Responses to 4-alternative questions: 4: often; 3: sometimes; 2: seldom; 1: never, and: I do not know.
7.2. I notice if my communication partner becomes uncertain about whether I can follow the conversation. Responses: Often (3); Sometimes (2); Seldom (2); Never (1). Average = 2.5; Median = 3.
7.5. I usually tell my communication partners about how they should best talk to me so I will have a good chance of hearing what they are saying. Responses: Often (5); Sometimes (1); Seldom (2); Never (1). Average = 3.0; Median = 4.
Examples of responses to the open-ended questions
5.11. How should the CPs behave in order to facilitate the conversation?
Have their face turned toward me; speak clearly and make eye contact with me; come closer when they want to talk; get my attention before they start; wait for their turn; not cover their mouth; talk one at a time; speak clearly and articulate well; talk in a quiet room and facilitate speech reading.
5.12. How do you behave in a communication situation to make your CP change to a better conversation mode?
I tell them that I have an HI (four respondents), but ask them to talk as usual; I explain what is important, and ask them to repeat when I need it; ask them to look at me; I place myself closer to the talker; I do nothing; I place myself strategically, so I can hear.
8.1a. When do you tell other persons about your hearing loss?
Four respondents always informed early; before the EC course: never, now pretty early on, especially if the situation has a potential risk or contains important learning components; at the initial presentation in conferences and courses; when I know it will be well received by the other persons; not for occasional acquaintances.
8.1b. Do you have a special strategy for giving information?
Several inform early on in a contact that is not only occasional; explain the importance of distance, visual contact and, when needed, how the technique functions; no special strategy, straight forward; having clearly visible hearing aids often leads naturally into a conversation and explanations.
8.3. Do you notice if you have not responded because you (probably) have not heard?
Six of the respondents answered: Yes, one Sometimes and one No. (No, after the lesson a student may come up and ask why I did not notice their question. Response: If you had raised your hand…)
8.5. Do you have any ideas about how to avoid irritation caused by your difficulties in following conversations in your family or among friends?
Be humble and empathic; show a humoristic attitude toward your own failures, my stupid answers have caused a lot of cheery laughter; inform about your own needs, and present the situation, e.g., if you are tired; dare to make demands on others; sit in small groups, speak one at a time; learn sign language.
 About the EC program
Responses to 4- or 5-alternative questions
7.10. I feel I get support from what I learned in the EC course when I inform others about my HI, on a scale from 1-4. 4: Often; 3: Sometimes; 2: Seldom; 1: Never.
Responses: Often (2); Sometimes (4); Seldom (3); Never (0).
Average = 2.9; Median = 3.
10.1.How much help have you had from the five/six specific tools of the EC program, on a scale from 1-5. 5: A great deal of help; 4: Quite a bit of help; 3: Some help; 2: Nearly no help; 1: No help at all.
The films: Average = 2.9; Median = 3;
CARD: Average = 3.0; Median = 3;
Hear Right: Average = 3.5; Median= 4(3).
Berne: Average = 2.0; Median = 2;
So it Sounds: Average = 3.8; Median = 4;
The Advisory Message (I-message): no data
Examples of responses to the open-ended questions
1.1.What do you remember first when you think about the EC course?
Meetings giving knowledge and insight; good teacher and a comfortable atmosphere; good to meet others with similar problems; good to get tools to be better prepared to meet new people (Spec CARD); I became more humble after the course in conversation methods (I-message); one pointed out the need for more time for practice.
8.1c: Has anything in the EC course made it easier for you to inform others about your HI?
It was good to hear about others’ experiences; after the course I started to inform others about my HI; to inform others earlier; to dare to tell about my HI; to inform before an (expected difficult) situation; yes, I’ve realized that I have to think in advance; it is internalized; I think I do.
8.6. Has any part of the EC program been useful in informing family and friends about your HI?
Five said Yes, one said No; one said: “they already know” and one said that she knew the techniques before the EC course; yes, I did it directly after the course; So it Sounds was good;
absolutely, also my self-confidence improved; I am going to inform my colleagues at school; also my teenage students, which is difficult, and I don´t know how to do it.
1.3. Would you recommend the EC course to others with HI?
Seven responded: Yes, one Yes, absolutely. One thought the program suited those who are somewhat aware of how to handle their hearing problems, but not those who are highly aware.
Comments, Study 2 and 3
 Methodological aspects
The study groups are small, 10 persons out of 20 in Study 2 and 9 persons out of 15 in Study 3, representing 54% of the participants who had passed the EC course at that time. Due to the long delay, we found it meaningless to conduct a falling off analysis (as for the Study circle leaders [9]). This analysis, however, showed that the non-responders did not have a more negative attitude or less use for the material than the responders did. Thus, the validity of the response profile would seem to be reasonable.
The advantage of the delay, on the other hand, is the insight that a substantial part of the curriculum seems to have remained with the participants. Thus, the results do give ideas about how to promote more permanent training outcomes.
The conventional comprehensive question: 1.3. Would you recommend the EC course to others with HI? had a very clear ”yes” response, supporting the validity of the positive attitudes and experiences of the EC program.
 Respondents’ attitudes toward the questionnaire
In Study 2, there was some criticism of the long time interval; they had forgotten a great deal; one thought some questions were offensive, e.g., 8.5 about irritation; it is not a necessary consequence of HI.
In Study 3, five thought it was good, two did not respond, and two considered the time interval to be too long. However, the elaborate answers provided by many of the participants would seem to indicate that they had clear memories and motivation to respond.
Discussion
1. Methodological comments
a. Evaluation aspects
The design of the studies presented can be criticized, and the data were limited. The topic, on the other hand, is unique, and the difficulty of conducting controlled randomized studies in complex rehabilitation is considerable. A formal evaluation of the EC program has been difficult also for other reasons. The program is intended to be flexible, and therefore in many audiological centers the complete program has not been used. Selected parts have been integrated into the preexisting habilitation/rehabilitation activities in the respective units. These variations prevented us from using experiences from several centers.
An evaluation of activity and participation could have been made according to the ICF model. To meet the high requirements of patient-centeredness [17, 18], the evaluated parameters would benefit from being expressed in relation to the individuals` preferences in the respective dimensions of activity and participation. If such an evaluation is to be meaningful, it has to be delayed until the ICF is extended to include the personal references, e.g. in accordance with the preferendum concept of the ecological framework [11]. Developing a scale of how preferable or acceptable a situation is may constitute a path toward a more patient-centered outcome measure.
A dimension that may give a global estimation of success in audiological rehabilitation concerns social circles or the communicative mass [11]. It is clear from the present results that the youngest persons with HI increased their interaction with NH schoolmates (Study 1), thus increasing their social circles. On the other hand, this increase was not without complications, as there was a tendency toward less enthusiasm and pleasure in relation to spending time with NH schoolmates, i.e. a decrease in the emotional dimension of the communicative mass.
b. Value of different tools
The EC program has now been evaluated in four enquiry evaluations, covering three groups of persons with HI presented in the current study and one group of hearing therapists presented by Borg and Borg [9]. The general evaluation of the EC program was positive. Although the groups were fairly small, it is clear that knowledge of the program has remained with the participants and that several of them have made good use of the different tools. In particular, many of the clients have received support from the tools when informing others about their hearing problems. On the other hand, thus far details about how they use the material, films, etc. have not been covered in the evaluations, nor has the question of how much the CPs’ communicative ability may actually have improved.
The films were appreciated, particularly the parts where the scenes showed how different persons explained their hearing problems to CPs. The films worked well to help initiate discussions. Not having to talk about oneself, and instead being able to refer to scenes in the films, was a relief and made even difficult discussions easier. The situation and conversation analysis tools (CARD and Berne) were used in daily life, not only in difficult communication situations, but also more widely in interaction with others. The CARD tool was not rated particularly high in the evaluations (see question 10.1), but it was clear from the open responses that many considerations and behaviors were expressions of constructive action. The insight tools (Hear-Right and So it Sounds) both enabled insights among the HI persons themselves when they experienced the difference between “normal hearing” and the different degrees of hearing loss. This insight was also used in the explaining procedure for the CPs.
Taken together, the four evaluations show that the participants had gained a great deal of E, E and C, C that also persisted over several years. “Culture is what remains when one has forgotten all that one has learned” [19].
1 c. Form of the program
It may be questioned whether a 14-16 h course is enough to begin a successful journey toward a role as counselor. First of all, at least in the Swedish system, clients with HI have continuing contact with several professionals in the rehabilitative team, giving repeated opportunities to
discuss their counselor role. For comparison, a 20 h program for clinicians in audiology was regarded as successful and over 90% reported positive changes in their counseling skills [20]. Support in the form of an Internet-based program may enable the person with HI – or professionals – to strengthen and prolong their counseling capacity [21]. A website with all of the films and tools is available for those who have passed the EC training program.
2. Is a counselor role realistic for a person with HI?
The present results also give fairly strong support for the success of the EC program, at least at a qualitative level. The clients taking part in the program report an increase in their empowerment, empathic attitude, their competence in the field of HI and at least some evidence of advancement in their role as counselors. Most of the participants inform others about their HI, and do so in a constructive way (CARD). The measures they take are directed toward the CP, themselves and the environment (cf. the ecological model, [11]; see Study 2 and 3, issues 8.1c and 8.6. Instructing CPs to speak clearly has been found to be beneficial [21], but it remains to be seen to what extent the person with HI can provide such instructions. Direct support for developing counseling skills was also obtained from the study circle leaders in Borg and Borg [9].
The notion that developing some counseling skills with moderate effort and training is realistic is also supported by observations from everyday life. A large group of persons with HI already have, in their ordinary lives, capacities and experiences that can be utilized and developed. Although we do not know what proportion of that group has experience in teaching, guiding and developing the people around them in their professional or private life, the skills of persons with HI should not be underestimated. Participants in this group have considerable competence, power and empathy, and many have counseled people, children and adults around them most of their life.
Most adults, children and young people can probably develop into the role of a counselor with empathy, empowerment and competence. There is a vast spectrum of courses for development of coaches, leaders counselors, etc., for persons without impairments. In professional development, counselor/mentor training is widely used [23, 24, 25). There is little doubt that most persons can develop in these respects, including persons with HI. Initially, some people may have neither the interest, experience nor the desire to do so, while others may find such a new role inspiring and challenging. Most, however, become interested as the training progresses.
Strong indirect support for our suggestion – that it is realistic to raise the ambitions for persons with HI to the counselor level – is found in the numerous studies evaluating group rehabilitation (e.g., [7, 13]), where the exchange of information about one’s own problems and constructive or destructive strategies is transmitted among group members, i.e. they all assume the counselor role. The challenge is when they meet persons who lack knowledge and may not have the same high level of empathy. That is when more focused training is needed. Such training could be integrated into many existing programs.
3. Extension of conventional rehabilitation programs
Focusing on the CP/significant other has a long history (e.g.[5], and has been more pronounced in recent years [7, 13]. According to Davis et al. [26] ”people within their communication circles require education and counseling.” They point out the role of self-efficacy, but do not extend the idea to include the possible counseling role of the person with HI. Counseling in connection with hearing aid fitting, however, has also been found to the increase the ability of the person with HI to explain a variety of hearing difficulties to others [26]. Such experiences highlight the possibility of successfully developing the counseling role for persons with HI in the context of several rehabilitation programs.
The limitation of the conventional approach is, however, quite clear. The CP is treated as one or a few persons. In everyday life, we have several CPs. The classification into three social circles is illustrative of this. The optimal approach for audiological rehabilitation includes all three circles of CPs. Our experience indicates that the person with HI is the best candidate for maintaining this focus in all relevant situations and for all circles of CPs.
By having high expectations and providing a distinct path in the training, many persons with HI will be able to assume the role of a counselor for the CP. This path is opened by avoiding direct interaction between therapist and significant others, which is in contrast to the present trend. This means that the person with HI need not seek help and be dependent on others, but can instead establish his/her own, self-centered locus of control [28, 29].
4. Counseling in other fields of functional disorder/chronic disease
Encouraging an active role for the person with a disability or disease is not unique to the field of HI. Clearly the present evaluation supports the idea that it is possible – at least for some persons with HI – to acquire sufficient competence to positively influence the attitudes and competence of others. This ought to apply to persons with other disorders/chronic diseases as well.
Many patient groups play an important role in their own medical care, diabetes being a typical example.
Extended self-management is desirable when support from doctors and nurses is insufficient. The role of family and close friends is emphasized and was found to be considerably more extensive than professional care for long-term conditions [30]. Regarding diabetes mellitus, de Lima Santos and Silva Marcon [31] conclude that family participation in the patient’s care plan should be developed, but they do not specify the role of the patient him-/herself as an instructor. A clearer role as counselor/instructor/mentor, similar to the one presented in the present study, is described by Palit and Chatterjee [4] in relation to parents of children with cerebral palsy and multiple disabilities, where the parents with experience took a leading role in a “parent-to-parent” counseling program. With the support of web-based programs, the involvement of non-professionals is likely to expand rapidly (cf. computer-based training for persons with HI [21]).
In situations where the underlying disease/disorder does not seriously affect intellectual capacities, and where the social network is broad and dynamic, the person with the disability is likely to be well qualified to provide the competence, empathy and empowerment needed to create an improved life situation.
5.Relation to the ecological framework/model.
The communication difficulties related to HI (first section in Study 2 and 3) clearly involve several of the concepts found in the ecological framework [11]. Factors that prevent good
information transfer are: the sender´s way of speaking, low volume, high speed, poor articulation, poor visual and auditory signals; the signal pathway, where distance and competing signals (noise) are confounders; the receiver’s (the person with HI) own impaired hearing, tiredness, distractions, high stress level.
The focus of the EC program is on the behavioral level of the interaction in particular, and evidence is presented showing achievements in the role of counselor for the person with HI. To what extent the behavior of the CP is actually changed as a result of the activities of the counseling is not directly shown. The increase in the social networks gives some indirect support for the occurrence of a mutual improvement.
External adjustments are well illustrated: technical aids, handling of distance, visual contact, noise pollution, and particularly active engagement in influencing external factors (counseling). Internal adjustments (internal coping) are not in focus in the questionnaire, but examples are given. Having a humoristic attitude toward one’s own HI and communication failures is perhaps the most important aspect (see also [6]). Several illustrations of increased social circles are given (Study 1), which together with knowledge, the intellectual dimension, and the emotional level show that the “communicative mass” can be a useful total outcome variable for use in audiological rehabilitation [11]. Interestingly, the emotional level of the students in Study 1 who were in contact with NH schoolmates showed a tendency to decrease at the same time as the circle widened. Given that Study 1 was short term, this may have been a transient phenomenon.
The preferendum was clearly shifted toward a more extrovert personality, being more open and active when explaining one’s own HI and counseling the CPs in the communication situation.
In a further development of the EC program, the ecological model points out the fact that the CPs are different and may benefit from different parts of the EC tool material, particularly the films focusing on different target groups. In an improved version of the evaluation methods we intend to develop tools for assessment of the three components of the communicative mass: the intellectual and the emotional dimensions as well as the size of the social network. All dimensions should be related to the individuals´ own preferences. One result of the development of counseling skills could also be evaluated as a change in the preferendum toward a more insightful and empathic state.
6. Further development of the EC program
The new version (Version 4) now underway has been designed on the basis of the participants’ suggestions. It is available on the Internet (www.horselhusk.se), but full access requires participation in the EC program. This requirement was introduced so as to avoid erroneous use and misunderstanding of the material and tools, which require practice in interaction. After the first step, the IT version can offer good support. In particular, it gives the user full access to the material to use in her/his information and counseling work with CPs.
In the evaluations, it was suggested repeatedly that the films be more group oriented, by making special films for different age groups: children, young adults, middle aged and elderly. The present series of films all feature these groups intermixed, but with overrepresentation of the age group 18-20 years, who are finishing upper secondary school. Group-focused material is a future goal, as well as developing evaluation tools based on the communicative mass.
Other suggestions from the Questionnaires are meetings with persons with HI who study or have studied at the university (Study 2) and putting more focus on employers and work leaders (Study 3). Prolonged contact between those who passed the EC course is also desired, e.g. in the form of a chat forum.
It remains also to be seen whether the CPs in the different social circles around the person who has practiced the EC program actually gain knowledge and competence in their communication with persons with HI.
Conclusion.
The four evaluations give a fairly consistent picture of the status and potential of the EC program. It has led to improvements in empathy, empowerment, competence and counseling ability among clients in various age groups.
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Acknowledgements
Sif Bjarnason, Inger Lundström and Inger Tillberg have been of great help in designing and evaluating the EC-program.
Key words
Hearing impairment, audiology. rehabilitation, counseling, pedagogy, empowerment, empathy, communication, disability
Contributions
Erik Borg is responsible for the audiological dimensions and Birgitta Borg for the pedagogic dimensions, particularly regarding counseling education.