A qualitative research of factors that predict discontinuation or non-use of assistive devices in people with hearing loss and deaf people

Abstract

BACKGROUND:

Deaf people using sign and/or spoken language and hearing-impaired people using spoken language face frequent difficulties in activities of daily living due to the communication barriers. Among the main strategies to compensate or mitigate these difficulties we find assistive devices: video relay services, cochlear implant, audio induction loop, FM system, hearing aids.

OBJECTIVE:

This study aimed to explore factors contributing to assistive technology abandonment among deaf individuals who use sign language within the deaf community and those who use spoken language.

METHODS:

A non-experimental, cross-sectional, correlational design was used for the study.

A semi-structured interview guide in the form of an ad hoc questionnaire containing 10 questions based on the International Classification of Functioning, Disability and Health. The study was carried out in Salamanca (Spain) in the association SADAP (Association of Postlocution Hearing Loss People) and CCSS (Salamanca Cultural Center for the Deaf).

RESULTS:

A total of 36 people participated in the study: 6 deaf people, 9 hearing loss people, 8 relatives and 13 professionals.

CONCLUSIONS:

The most common factors leading to assistive technology abandonment among deaf and hearing-impaired individuals include negative perceptions of the product, malfunction issues, high maintenance costs, insufficient training, and the stigma associated with its use.

SIGNIFICANCE:

There is a scarcity of studies within occupational therapy focusing on individuals with hearing loss, particularly those who communicate through sign language. This population often faces activity limitations and participation restrictions. While assistive products and technologies can enhance their daily functioning, negative factors that result in abandonment or discontinuation of use remain significant concerns.

Keywords

Abandonment assistive device deaf people focus groups hearing loss sign language

1. Introduction

Deaf people using sign and/or spoken language and hearing impaired people using spoken language face frequent difficulties in performing instrumental and advanced activities of daily living due to the communication barriers that arise in the settings in which they perform these activities. Studies have revealed an association between self-reported hearing impairment, the use of hearing aids, and performance in instrumental activities of daily living [1]. The severity of age-related hearing loss is linked to impaired daily activities. To address these communication challenges, a diverse range of assistive devices and technologies (AT) are utilized, including cochlear implants [2], hearing aids [3], hearing loops [4], frequency-modulated (FM) systems [5], and software applications (APP). Integrated services involving people, such as video relay services, are also becoming increasingly prevalent [6, 7, 8].

A sizeable body of scientific literature has demonstrated the importance of research in to the factors influencing the abandonment or non-use of AT. For example, Phillips and Zhao (1993) [9] conducted a study with 277 users and identified four general factors that could lead to abandonment of these devices: the failure of suppliers to consider consumers’ opinions, difficulty obtaining AT, poor device performance and changes in users’ needs and priorities. In another study, Riemer-Weiss and Wacker (2000) [10, 11] sought to predict abandonment of AT according to the context of use and concluded that relative advantage and consumer involvement play a significant part in predicting discontinuance. They also found that consumers must be involved in the AT selection process and that AT must meet users’ functional needs, as well as contributing to their personal needs and goals and reflecting their values and preferences.

Meanwhile, Pape, Kim and Weiner (2002) [12] carried out a review of the topic, with a focus on the influence of personal meanings on the integration of AT into daily activities. The most relevant factors shaping the integration of AT into users’ lives include their expectations regarding its functionality, the degree to which it met their needs [13], the social stigma associated with its use, lack of knowledge about its capabilities [14], and the belief that disability did not define the user as a person.

One particularly relevant study is the literature review produced by researchers from the ATOMS project, which identified more than 60 articles and books by researchers in the field of AT [15]. The review had two main objectives: to identify and classify the factors influencing positive adoption and negative abandonment of AT; and to develop innovative methods to quantify the discontinuation of use. It concluded that a range of terms is employed interchangeably in the literature to describe the situation of people who stop using AT: disuse [16], non-use [17, 18, 19], rejection [20], avoidance [21], non-compliance [22], abandonment [9, 16, 21, 23, 24] and discontinuation [9]. The abandonment of AT may be associated with negative factors, as well as with positive or neutral factors. The ATOMS model identifies demographic variables (e.g. gender, age, location, education and culture) as factors that vary between individuals and could influence their continued use of AT.

Although there is growing interest in studying the factors that influence the abandonment of AT [25], few studies have used the conceptual model developed by the ATOMS project [26, 27]. Very few studies have discussed AT for deaf people using qualitative methodologies that take the user’s own perspective into consideration [28]. Therefore, the primary objective of this study was to explore factors contributing to AT abandonment among deaf indivuals who use sign language within the deaf community and those who use spoken language. The research was approached from the perspective of deaf people themselves using a qualitative methodology that followed established recommendations (i.e. the COREQ-32 checklist) [29]. In order to achieve broad picture, we considered the triangulation of relatives’ and professionals’ perspectives, and framed the study using the abandonment factors model developed by Lauer, Longeneck, and Smith (2006) [26, 27].

2. Material and methods

2.1 Posionality

The author has clinical experience as an occupational therapist for deaf and people with hearing loss, as well as experience in conducting research among this group. The author considers herself allies of the Deaf Community and understands their culture and language. Deaf individuals and people with hearing loss encounter daily occupational injustices and experience infringements upon their rights. As an academic and researcher, I bear the responsibility of broadening the perspective toward this group and enhancing outcome measures through the utilization or non-utilization of occupational therapy (OT).

2.2 Design

A non-experimental, cross-sectional, correlational design was used for the study.

2.3 Participants

Table 1
Characteristics of the deaf and people with hearing loss participants ( $n=$ 15)

VARIABLE	M (SD)
Age	47.27 (14.81)
Gender
Male	12
Female	3
Language
Sign language	5
Spoken language	8
Both	2
Onset of loss
Prelocutive	8
Postlocutive	7
Type of loss
Cophosis/total hearing loss	12
Hypoacusis	3

The sample was selected using non-probability purposive convenience sampling. To address the research objectives the sample was selected using purposive convenience sampling following four inclusion criteria: a composition of members of the deaf community versus members of the hearing community; people with prelocutive/postlocutive hearing loss ranging from hypoacusis to cophosis; users of different types of AT (hearing aids, cochlear implants and new technologies such as VRS); and users from different age groups. A total of 36 people participated in the study (30 women and 6 men). Among them were six deaf people, nine hearing impaired people, eight relatives and 13 professionals. The median age of the participant was 40.6 ( $\pm$ 14.5). In relation to deaf and hearing loss people ( $n=$ 15) it should be noted that 5 used exclusively Spanish sign language, 8 spoken Spanish and only 2 participants used both Spanish sign language and spoken language. Likewise, as for the time of loss, 8 participants had a prelocutive loss and 7 had a postlocutive loss. Finally, regarding the use of AT and other technologies, 8 participants used hearing aids (BTE), 3 of them cochlear implant and 4 used technologies such as VRS, and face-to-face communication technologies (Table 1).

Table 2

Characteristics of professionals and relatives ( $n=$ 21)

VARIABLE	N (%)
Age	M $=$ 34.10; SD $=$ 14.1
Gender
Male	18 (85.7)
Female	3 (14.3)

Table 3

Description of the profiles of the relatives and professionals ( $n=$ 21)

Focus group	$n$	Participants
Group 1 Relatives	8	1 Daughter of a person with a severe hearing loss who is a user of a hearing aid and has a postlingual type of loss. Hearing aid user and with a postlocution type of loss. 1 Child of a person with moderate hearing loss who is a hearing aid user. 1 granddaughter of a person with a profound hearing loss and postlocutive
Group 2 Relatives		3 people (parents and mother’s sister) relatives of a person with a prelocutive loss user of hearing aids and use of instant messaging such as whatsApp.
Group 3 Relatives		2 People (spouse and daughter) of a person with profound postlingually profound postlocutive hearing loss.
Group 1 Professionals	13	1 Social worker and Sign Language Interpreter (SLI) 1 Speech therapist and SLI 1 SLI
Group 2 Professionals		1 Speech therapist 1 SLI
Group 3 Professionals		1 Social educator and SLI 1 SLI and social-health care technician 1 SLI 1 Psychologist and SLI
Group 4 Professionals		1 Occupational Therapist 1 Psychologist and SLI 1 Speech therapist 1 Psychopedagogue and SLI

For the sociodemographic characteristics of the professionals and relatives ( $n=$ 21) see Tables 2 and 3.

A total of 11 focus groups were carried out, distributed as follows: 1) three focus groups were held for relatives, with a total of 8 participants; 2) two focus groups were held for deaf people who considered themselves members of the deaf community, with a total of 6 participants; 3) two focus groups were conducted with hearing loss people who did not belong to the deaf community, with a total of 9 participants and 4) four focus groups with professionals, with a total of 13 participants.

They were all previously known to the interviewer (Occupational Therapist-OT and CODA [Child of Deaf Adult]). The sample was selected via the Association for People with Postlocutive Hearing Loss (SADAP) in Salamanca and Salamanca Cultural Center for the Deaf (CCSS). The staff at these association approached their clients who meet the inclusion criteria with the call to participate in the study. Following their approval the principal investigator contacted the deaf participants by email and the relatives and professionals by telephone and email or in person. None of the individuals contacted refused to participate in the study.

Inclusion criteria:

•

People with prelocutive or postlocutive hearing loss.

•

Hearing impaired people aged over 18.

•

Direct relatives of hearing impaired people (first or second-degree).

•

Professionals working directly with hearing impaired people.

Exclusion criteria:

•

People with an additional diagnosis besides hearing loss.

2.4 Instruments

A semi-structured interview guide in the form of an ad hoc questionnaire containing 10 questions about body functions, activities and participation, environmental factors and personal factors was used (Table 4).

2.5 Procedure

The study utilized a qualitative methodology through focus groups, adhering to the guidance outlined in the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist [29], which is available in the manuscript’s appendix (appendix 1). As an occupational therapist with clinical and research experience with hearing impaired people belonging to the deaf community and people with postlocutive hearing loss, the principal investigator of the study was the only interviewer for the 11 focus groups. During all the focus groups, the interviewer followed a questionnaire script that she had prepared herself (Table 4). The focus groups were held in different locations: on the premises of the SADAP association, in a multi-purpose room at the University of Salamanca and at private homes. To record the sessions, a voice recorder was used for the focus groups with professionals, relatives and deaf people using spoken language. Two video cameras were used in the focus groups for deaf people using sign language in order to be able translating and transcribing the discussion. The sessions lasted between 19 and 90 minutes and the focus groups with professionals were the longest.

All participants were aware of the purpose of the study and everyone contacted via different channels (WhatsApp, Telegram and video relay services) was previously known to the interviewer. Informed consent was obtained from all subjects involved in the study and the study has approved by the bioethics committee (number 2020.244).

None of the participants took notes during the focus groups, although all participants were given a pen and paper in case they wished to do so.

None of them expressed a desire to receive a report of the session outcomes.

3. Results

The recordings from the focus groups were transcribed in text format (primary documents). The transcription was carried out manually by the principal investigator. Then, a content analysis was performed on the primary documents in which the different ideas expressed by the participants were assigned codes under Lauer, Longeneck and Smith’s (2006) [26, 27] model of abandonment/discontinuation factors. Atlas ti 6.2 software was used to record and categorise the discourse from the focus groups.

Table 4
Ad hoc questionnaire administered to the 11 focus groups and based on the ICF [50]

Question	Related ICF component
What do you think about amplifying devices for hearing impaired people?	Environmental factors: products and technology
Do you think that assistive technology contributes to the development of psychosocial functions, or in other words, does it help users acquire the necessary personal skills to engage in social interaction?	Activities and participation: interpersonal interactions and relationships
How do you think assistive technology can contribute to the communication and reception of spoken, non-verbal, sign language or other messages?	Activities and participation: communication
Do you think assistive technology helps with perceiving sounds and distinguishing their location, volume and quality?	Body function: hearing and vestibular functions
What do you think of assistive technology and how it can hinder participation in educational, professional or leisure activities?	Activities and participation: community, social and civic life
Do you think that assistive technology helps users access and use communication technologies?	Environmental factors: products and technology
Do you consider deafness a disability or do you think deaf people are a group with a language and culture that differ from spoken language and culture?	Environmental factors: attitudes
Do you think that personal factors can influence the use of assistive technology? e.g. self-esteem, motivation, adaptability, etc.	Personal factors
Do you think that sociodemographic factors influence the use of assistive technology? e.g. gender, age, sociocultural status, socioeconomic status, education level, etc.	Personal factors
Do you think assistive technology helps users perform instrumental activities of daily living, such as using the telephone, moving around the community, handling household chores, etc.? How about advanced activities of daily living, such as education	Activities and participation

Table 5

Factors that predict abandonment or discontinuation of AT according to participants’ characteristics according to the ATOMS model ( $n=$ 36)

Dimension	Factor	Total	People with hearing loss	Deaf people	Professionals	Relatives
Others	Change in needs/priorities	2	0	0	0	2
Person	Outgrew device	1	0	0	0	1
	Felt never needed it	5	0	2	1	2
	Negative view towards device	32	4	5	12	11
	Depression	3	1	0	1	1
	Lack of disability acceptance	17	0	3	9	5
Assistive technology	Difficult to use (size, weight, energy consumption)	4	2	0	1	1
	Safety	1	0	0	1	0
	Aesthetics	10	0	3	4	3
	Complex written instructions	9	2	0	5	2
	Lenghty set-up time	2	0	0	0	2
	Malfunction/device failure	38	9	11	14	4
	Pain/discomfort	7	2	2	3	0
	Cost to maintain	28	3	8	7	5
	Damaged property	5	1	0	4	0
	Never installed-never used	7	0	2	5	0
	Mismatch (wrong device)	13	2	0	8	3
	Insufficient/lack of training	18	0	1	15	2
	Opinion no considered during device selection process	3	0	0	1	2
Environment	Accesibility problems	15	3	1	11	0
	Socially unacceptable (stigma)	18	3	2	9	4
	Required personal assistance	1	0	0	1	0
	Contingent upon another device	2	1	0	1	0
Positive	Replaced with better equipment	1	0	1	0	0
		242	33	41	113	50

Table 6

Examples of quotes coded about person dimension according to project ATOMS (Lauer, Longenecker and Smith’s (2006) model)

Dimension	Factor	Quote
Person	Negative view towards device	“If you have a negative view of assistive technology, you feel like it’s beneath you or you reject it, even if it could be really useful for you and help you in lots of ways you’re going to reject it so that it doesn’t affect your self-concept”. (Hearing loss /discontinuation user of hearing aid-BTE) “The C.I. does nothing for you and neither does the hearing aid if you are born deaf and they don’t teach you techniques on how to hear, …If they don’t train you to hear it doesn’t help you at all. WhatsApp, for example, does as long as you know how to read, of course. You know how to read of course. For example in class you can read things but you can’t hear if you are deaf.” (Deaf person) “the first sensations you have at the beginning of using the hearing aid are different, you feel different, you hear different and everything is different, you feel different, you hear different and everything is different”. (Relatives of a person with a prelocutive loss user of hearing aids). Many people with hearing loss do not want to wear hearing aids so that other people do not know that they have a hearing problem, there are many people who wear glasses because socially it is well seen but hearing aids are not.(Speech therapist and SLI)
	Depression	“I experienced a very serious depression, for many of us it’s a very traumatic, negative situation”.(Hearing loss/ /user hearing aids-BTE and other technologies). “Actually I have been with a psychologist all my life because I have many periods of sadness, deafness is really very invisible.” (Deaf person). My mother has been diagnosed with anxiety-depression since she became aware of her hearing loss, she has become a very reserved and distrustful person as a result of her hearing loss.(Relative of a person with hearing loss) “Many people who should use AT in general because of a hearing loss do not do so because they are in a process of mental illness with processes of depression and even cyclothymia, we have many users with mental health problems and who could benefit from the use of TA but because of their health condition they do not, it is the ‘fish that bites its tail’, it is a serious problem”. (SLI)
	Felt never needed it	“Women tend to get depressed more often because we’re more sensitive; men don’t accept them out of male pride, they feel like they don’t need hearing aids”. (Hearing loss/ user cochlear implant) “The C.I. does nothing for you and neither does the hearing aid if you are born deaf and they don’t teach you techniques on how to hear, if they don’t train you to hear it doesn’t help you at all. WhatsApp, for example, does if you know how to read, of course. For example, in class you can read things, but you can’t hear if you are deaf.” (Deaf person)
	Lack of disabililty acceptance	“Wearing hearing aids sets you apart, almost like being socially excluded. It makes me feel disabled when I’m not”. (Deaf person/user technology face to face). My wife doesn’t even want to hear about using other hearing aids, she really hasn’t had a good experience, she says that the sound is very different and she doesn’t understand, she also has a lot of tinnitus and no matter how much you amplify, it’s not that they understand the sound better.(Relative of a person with hearing loss). There are many older deaf people who could benefit from the use of an I.C. but do not want to use it or go through the process.(Social educator and SLI) “I used to be a very active and outgoing, but when I lost my hearing… I struggled to accept my disability, and I still do not accept it. Whenever I can I avoid using the hearing aid. Even though I continue the treatment, I find it challenging to adapt to the changes in my life. I feel like a different person now compared to who I was before." (Hearing loss) My wife has never really accepted her hearing loss, she refuses to use AT, very few people really understand this disability, they don’t understand the limitations they encounter in their day to day life (Relative of a person with hearing loss)

Table 5 shows the factors that predict abandonment or discontinuation of AT according to participants’ characteristics (see Table 5 factors and Tables 6–8 for examples of quotes).

4. Discussion

Evaluating the impact of AT and specialized technologies on daily life and social participation is an important part of research into outcome measures in AT [30, 31, 32]. Numerous authors have emphasized the importance of AT use in addressing communication issues caused by hearing impairment. The scientific literature on this topic includes studies that evaluate AT, the reasons for abandoning AT and the services that assess AT [14]. However, in Spain, there has been very little research into outcome measures in AT and even less in relation to deaf people. No prior studies have explored abandonment factors in such a comprehensive manner as in Lauer, Longeneck & Smith’s (2006) model [26, 27]. In an attempt to address this gap, this study aims to elicit the opinions of end users and their relatives, as well as professionals working in clinical practice on a daily basis, in order to obtain relevant information about the factors that prompt them to abandon or discontinue their use of AT.

Table 7
Examples of quotes coded about assistive technology dimension according to project ATOMS (Lauer, Longenecker and Smith’s (2006) model)

Dimension	Factor	Quote
Assistive Technology	Difficult to use	“I know that there are programs to write whatsapp audios but i don’t even know how to use the cell phone for me it’s difficult and there are no buttons, everything is tactile”. (hearing loss) “For example, if you aren’t receptive to new technology or you’re not good at using it or you can see you’re never going to understand it, you give up on the device quicker, you get demotivated”. (Deaf person/user technology face to face). “every day new applications come out, for example for the bank, but for my mother that is impossible, there is a generational problem and a problem of technological natives and non-natives.” (Relative of a person with hearing loss) “I think that part of the problem is that many of these supports, technical aids, technologies, and everything is very new…I think that currently we have people who are digital natives and those who are not, and the vast majority are not. Moreover, the older the person being introduced to the digital world, the more challenging it becomes to adapt, as the gap widens. (Social worker and SLI)”
	Malfunction/ fault Pain/ discomfort	Do you know the wounds that my hearing aids caused me? I had blisters that never healed until I took them off? (hearing loss) The VRS are fine but many times the connection is cut off or the video is slow and you lose information. This happens for example with the subtitling… sometimes not everything is subtitled or it has even happened at home that the subtitling corresponds to another movie.(Deaf person) “At home some TV programs are not subtitled and when they are subtitled many things are not, and I will not mention more but that my mother can not go to the movies because there are no subtitles in the XXI century …” (Relative of a person with hearing loss) “a big problem is that, for example, sign language users, is that sign language relies on facial expressions, …any avatar has to improve a lot to get to be able to because there are many signs that are the same in their formative parameters but they require differentiating between one sign or another expression which an avatar still can’t give it.” (SLI) “I found the hearing aids noisy and painful… I couldn’t stand them” (Hearing loss /discontinuation user of hearing aid-BTE). “As much as I want to use my hearing aids I can’t, I have already tried several models and types, all of them hurt me and cause me tremendous infections, I can’t use, and I can’t benefit from the use of an I.C. because I don’t have total loss”. (Hearing loss /discontinuation user of hearing aid-BTE). “our daughter had many problems with infections because of the hearing aids, and of course she never got cured, when she was a child it was a problem because she had to take them out anyway.” (Parents of a person who is deaf) “hearing aids are very annoying if there are a lot of people talking or noisy environments, I see it in many people of the association who remove them or take out the batteries” (Occupational therapist)
	Cost to maintain	“Buying batteries for both hearing aids is a considerable monthly outgoing”. (Daughter of a person with a severe hearing loss) “C.I. is very bad – so much expense for nothing”. (Deaf person) “Luckily we can afford to buy all the products that our daughter needs because we have a good economic ‘cushion’, but I do not understand how the social security does not finance them [they pay] only for children, what happens that when they are older they do not need them, they really have a very high cost and should be helped from the public health”. (Parents) “The fact that hearing aids are not included in the catalogs of orthoprosthetic techniques for all the people who need them is a matter of occupational justice; we are depriving people of a fundamental right.” (Occupational therapist)
	Damaged property	I don’t know how many times I’ve had to change the tube that is inserted into the ear, and of course, until you get it back in place, I can’t hear for at least two days. (Hearing loss) The number of times we have had to go to fix the hearing aids is not normal, and especially to clean them because they get clogged up quickly.(Parents of a person who is deaf) “The kid runs around, his implant falls out, he pulls it out…he breaks the wire”. (Psychopedagogue and SLI)
	Mismatch (wrong device)	“They make things but they don’t ask the people they’re aimed at; often they give you the name of what you have to ask for without any kind of evaluation”. “(Hearing loss/ /user hearing aids-BTE and other technologies)”.“For example, when I used to have hearing aids, I couldn’t differentiate between the sounds of an ambulance or a police siren nor a police siren. Now with the C.I. I can differentiate many things;” (Deaf person who uses C.I)

Table 7, continued
Dimension	Factor	Quote
		My grandmother was given some very sophisticated ones, you could even download an app and adjust the volume, but what does my grandmother do with that? They do not realize that my grandmother does not know how to handle that, she does not even have a smartphone to download the application, let alone know how to use it to get the most out of it. (Grandaughter of a person who is hearing loss) “I am already afraid when they go to a store to renew the hearing aids, a lot of innovation, but little tested in people who will use it, I do not understand how they do not do feasibility studies of the products” (Social worker)
	Insufficient/ lack of training	“People who could get on well with it but aren’t given training, it happens a lot… There are loads of devices and technologies but no training resources or services”. ” (Hearing loss/ /user hearing aids-BTE and other technologies) “I think that in terms of access, yes, but not in terms of use, that is to say, it is not enough for me that you give me a laptop, I have started giving away laptops since deaf people can use the VRS. However, what can one do with this without teaching him how to use the laptop.. I worry about teaching the members of the association, including board instructions of how to use the device”. (Deaf person) “There is no training in the use of applications or technologies in general, digital education is necessary but we cannot harm our elders with so much technological advance” (Grandaughter of a person who is hearing loss). “There is a lack of training in general, here there is a need in terms of the occupation of managing one’s own health, knowing how to take care of the devices, or managing all of today’s wearables or assistive technologies would improve the performance of this population in general” (Occupational therapist)
	Opinion not considered during device selection process	“Often, you go to a shop, and they give you the first thing they can think of, they don’t even ask you”. (Hearing loss/ user cochlear implant). “I don’t know, I’m going to buy a wheelchair and I can choose the model and color, with the hearing aids they give you those nude color and that’s it. I would like to have them yellow, but they don’t even give you the option …”. (Hearing loss who uses hearing aids) “They sold my grandmother state-of-the-art hearing aids with an application included, no one asked her at any time if that was what she wanted, she trusted the technician who assisted her but…” (Grandaughter of a person who is hearing loss).

Table 8

Examples of quotes coded about environment and dimension according to project ATOMS (Lauer, Longenecker and Smith’s (2006) model)

Dimension	Factor	Quote
Environment	Accessibility problems	“Many places don’t have the T position for the hearing loop, so there are lots of activities I’d like to do but I can’t participate in them”. (Hearing loss/ /user hearing aids-BTE) “FM, especially cinema, conferences, theater, as there is no FM. It [T option] would be a good help but since there isn’t, we’re screwed, and we don’t go. I love theater, for example, and I used to do theater and I had to give it up because I didn’t know about it; so it’s a problem that it’s still not very developed at the street level. street level” (Hearing loss/ /user hearing aids-BTE) “There is no accessibility, I need my interpreter for many things, it is true that with VRS or other apps or technologies, I can already ask for medical appointments, contact the bank among other more instrumental activities of daily life. For example, I love movies, but are there subtitles? no… I can obviously go to one in original version but there are few and I also need to rely on lip reading but if it is the original version I don’t understand English.” (Deaf person) “I am deaf, and I use my natural language, I have no limitations in my day to day life, the restrictions I have are those placed by the hearing, my language is official and so it should be respected, the environment should be adapted to me and not the other way around,” (Deaf person who uses SSL). “I would love to go to the movies with my wife, but we can only go to the ones that are in the original version with subtitles” (Husband of a person who is hearing loss) “Universal accessibility and design for all people looks very good on paper and in the law, but there are no resources, efforts or personnel working on it. We say that deaf signers have a disability, okay, we say it because they have a hearing limitation and cannot communicate. But then an immigrant who does not know our language, what is he/she?” (Psychologist and SLI) “I would love to be able to do activities in the association but really the social participation of this group is diminished by the lack of accessibility, for example, cinemas, theaters, talks…” (social worker and SLI) “If I go to the bar I don’t take it, why would I take it, everybody looks at you, asks you… I always go alone, it seems that since I put this on people think I’m stupid or something, it’s too bad I stopped doing things with people and now I do others on my own.” (Hearing loss person who uses hearing aids)
	Socially unacceptable (stigma)	“Luckily I’ve got long hair and I can cover it up”./“The first day I went to university, I didn’t wear it so that people wouldn’t see it. It’s like they think you’re cognitively inferior if you’re deaf”. (Deaf person/user technology face to face and hearing aids) “Having a hearing aid makes you different and it’s already like I don’t know. maybe the manufacturers can do something maybe in a few years they could make it smaller or standardize it, like glasses” (Parents) “Actually, many people who need a hearing aid do not use it for aesthetic reasons and because of what they will say, proof of this is that women cover it with their hair and do not wear ponytails.”
Others	Replaced with better equipment	“First, I wore hearing aids in both ears and then I got a cochlear implant. With the cochlear implant, I’ve noticed a huge improvement”. (Deaf person/user cochlear implant) “The truth is that with the latest hearing aids our daughter hears and understands everything much better” (parents of a daughter who is deaf)
	Change in needs/ priorities	“When my hearing loss got worse, I decided to get an implant. I didn’t have anything to lose if it went wrong”. (Hearing loss/user cochlear implant) “I was insisted by the ENT specialist to have it implanted, after three years I did it… the worst mistake of my life I did a surgery for nothing because I removed it in less than a year, with technology like applications, VRS and my SLI I organize myself in my day to day life, I do not need to hear to live fully happy”. (Deaf person)

The data in Table 5 corroborate the findings of previous studies that have sought to evaluate and measure the outcomes of AT. In light of the above, it should be noted that the inclusion of different profiles is due to the ultimate goal of data triangulation and therefore, in Tables 6–8, quotes from all the profiles included in this study appear. In relation to the negative factors related to the assistive technology, the following should be noted for example, the most cited Phillips and Zhao [9] concluded that poor functioning/malfunction, negative perceptions of the product and maintenance costs contribute to higher levels of abandonment or discontinuation These results are repeated in the current study. For example, a deaf person who uses sign language reports “I don’t need to have a hearing aid, I need to have no barriers and use my natural language, it is the society that puts barriers, not my natural language (Deaf person).” (Hearing loss postlocutive) adds another cognitive psychological reason of rejecting assistive technology even with the cost of infected functioning: “If you have a negative view of assistive technology, you feel like it’s beneath you or you reject it, even if it could be really useful for you and help you in lots of ways you’re going to reject it so that it doesn’t affect your self-concept”.

It seems that for families the cost factor, not only of acquisition but also of maintenance, is a predisposing factor to the non-use of AT. Among the negative factors associated with the Assistive Technology (AT) itself, as outlined in the ATOMS model [27] by Lauer et al. [26], is inadequate or non-existent training in AT [32, 33, 34]. A prevalent theme in the current manuscript underscores that despite the strides made in Assistive Technology (AT) and the emergence of new technologies, individuals who are deaf or experience hearing loss, along with their families and professionals, perceive insufficient training in AT as a notable constraint.

Regarding the factors related to the environment according to the ATOMS model, for example, the stigma factor is another issue associated with the use of AT and several authors have concluded that it is the main cause of the abandonment or non-use of AT [35, 36]. Moreover, within hearing loss people, there are a stigma surrounding AT. Due to the social reactions they encounter, which often reflect a belief that assistive technology users are seen as having cognitive limitations and lower capacity [37]. This factor has been reported by the different focus groups in the present study. It is worth noting, for example, the sentence of “The first day I went to university, I didn’t wear it so that people wouldn’t see it. It’s like they think you’re cognitively inferior if you’re deaf”. Another factor relating to negative attitudes to disability and stigma is aesthetic concerns, which are associated with numerous instances of AT abandonment [12, 34] and non-acquisition. Similarly, failure to accept disability is a major factor in AT abandonment, especially within the deaf community. According to the NAD (National Association of the Deaf), deaf people who use sign language want and are proud to be deaf [38] so they already have a negative view towards AT and have felt never needed it, factors specific to Lauer’s model [26, 27]; for example in the present study “I am deaf, and I use my natural language, I have no limitations in my day to day life, the restrictions I have are those placed by the hearing, my language is official and so it should be respected, the environment should be adapted to me and not the other way around,” (Deaf person). On the other hand, many elderly people deny their hearing loss and avoid any chance to enjoy AT benefits [39], so this is an important psychosocial characteristic to consider when evaluating AT for this group.

Finally, regarding the personal factors outlined in the ATOMS model, the Matching Person and Technology [40] underscores the significance of identifying the optimal match between assistive technology and each individual. This involves considering individual’s characteristics, needs, personal preferences, and lifestyle. In order to achieve the desired match, a proper evaluation through appropriate instruments must be carried out before a product is acquired to measure outcomes, such as Psychosocial Impact of Assistive Devices Scale (PIADS) [41].

It is vital that AT is adequately evaluated and that research into outcome measures in interventions using AT continues in order to avoid limitations and negative outcomes such as early abandonment or poor fit between users and devices.

Additionally, our research underscores the importance of considering significant psychological aspects, calling for evaluations to encompass the psychosocial impact of AT [42], thus ensuring a user-centered evaluation approach [43].

Multiple authors have discussed the potential for the ICF to be used to measure outcomes [44, 45, 46] and numerous instruments for selecting AT have included components from the ICF [47]. The ICF offers a systematic method for organizing users’ needs and capabilities, prioritizing objectives focusing on functioning and disability, as well as contextual factors [45, 48] that are absent from other models. It even describes the relationship between health conditions, normal activities and social participation, taking contextual and personal factors into consideration [49]. However, the ICF has several limitations: it lacks temporal and causal components [50], which are both necessary for prediction, and it omits psychosocial factors and their influence on outcome measures [31]. The ICF coding process has also been widely criticized for diminishing the instrument’s reliability [51], representing one of the limitations of the study presented here. The study could face criticism due to its small convenience sample, limiting generalizability to other populations. However, this purposeful convenience sample, coupled with the rich and triangulated data collected from diverse perspectives, aligns with qualitative method standards and amplifies the voices of those who are less heard in research, so far.

In future research, one of the most pertinent areas to explore is the evaluation of outcome measures throughout the process of selecting and acquiring assistive technology (AT), aiming to prevent abandonment or discontinuation of use. Additionally, it is crucial to assess changes in patients’ perceptions of their AT limitations on their activities, participation, and quality of life to establish the efficacy of AT among individuals who are deaf or hearing impaired, as suggested by other scholars [52]. Finally, instruments for evaluating AT within this exclusive group should be thoroughly analysed and validated, considering their unique needs [53]. It’s worth noting that deafness is one of the least studied disabilities in scientific literature, particularly concerning assistive technology and elderly individuals. Hence, this study will play a crucial role in promoting the adoption of AT and enhancing awareness of the challenges related to its usage within this group [54].

5. Conclusion

The use of AT among deaf and hearing impaired people is vital to allow them to perform activities of daily living and participate in society, so it is important that the process of selecting an AT for a specific individual includes a standardized, transparent description of its functioning and that outcome measures are studied.

Although the results of this study cannot be extrapolated to other settings, they show that the most frequent abandonment factors among deaf and hearing impaired people are negative perceptions of the product, poor functioning/malfunction, maintenance costs, inadequate or non-existent training and stigma surrounding its use. The factors that most frequently lead to the abandonment or non-use of AT are those included in the AT and environment dimensions, which means that it is necessary to incorporate evaluation processes and procedures for the selection, adaptation and use of AT, and on the other hand, carry out usability studies in which deaf people and people with hearing loss are involved in the entire use and implementation process in their day. a day.

Author contributions

E.J.A conception, performance of work, interpretation or analysis of data, preparation of the manuscript, revision and supervision.

Ethical considerations

The study has been approved by the bioethics committee of the Principality of Asturias (number 2020.244). Informed consent was obtained from all subjects involved in the study.

Funding

This research received no external funding.

Supplementary data

The supplementary files are available to download from http://dx.doi.org/10.3233/TAD-230038.

Footnotes

Acknowledgments

We acknowledge the support of the deaf people, professionals and relatives who participated in the study.

Conflict of interest

The authors declare no conflict of interest.

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A qualitative research of factors that predict discontinuation or non-use of assistive devices in people with hearing loss and deaf people

Abstract

BACKGROUND:

OBJECTIVE:

METHODS:

RESULTS:

CONCLUSIONS:

SIGNIFICANCE:

Keywords

1. Introduction

2. Material and methods

2.1 Posionality

2.2 Design

2.3 Participants

Table 1 Characteristics of the deaf and people with hearing loss participants ( n = 15)

2.5 Procedure

3. Results

Table 4 Ad hoc questionnaire administered to the 11 focus groups and based on the ICF [50]

Table 7 Examples of quotes coded about assistive technology dimension according to project ATOMS (Lauer, Longenecker and Smith’s (2006) model)

Author contributions

Ethical considerations

Funding

Supplementary data

Footnotes

Acknowledgments

Conflict of interest

References

Table 1
Characteristics of the deaf and people with hearing loss participants ( $n=$ 15)

Table 4
Ad hoc questionnaire administered to the 11 focus groups and based on the ICF [50]

Table 7
Examples of quotes coded about assistive technology dimension according to project ATOMS (Lauer, Longenecker and Smith’s (2006) model)