Deaf in one ear: Communication and social challenges of patients with
single-sided deafness post-diagnosis
Pamara F. Changa,
*, Fawen Zhangb
, Andrea J. Schaafc
a
Department of Communication, University of Cincinnati, Cincinnati, OH, USA
b
Department of Communication Sciences and Disorders, University of Cincinnati, Cincinnati, OH, USA
c
Department of Communication, Michigan State University, East Lansing, MI, USA
A R T I C L E I N F O
Article history:
Received 20 April 2019
Received in revised form 12 October 2019
Accepted 14 October 2019
Keywords:
Single-sided deafness
Health and family communication
Multidimensional medical teams
Patient navigation and guidance
A B S T R A C T
Objective: To understand the communication and social challenges that individuals with SSD face post
diagnosis.
Methods: Fifty-two single-sided deaf patients from all over the world participated in semi-structured
interviews. Interviews were digitally recorded, transcribed verbatim, and coded using a thematic analysis
approach.
Results: Patients with single sided deafness identified challenges including: increased reliance on family
members, decreased sense of autonomy, communication quality changes with family members,
information discrepancy across family members and various emotional responses, conflicting
information from interactions with multiple medical professionals, and lack of knowledge regarding
what to anticipate post diagnosis.
Conclusion: This study provides insights into patients’ perspectives around single-sided deafness and its
challenges, and the various health care approaches (e.g., patient- and family-centered care, third party
disability, patient navigation) that could be implemented post diagnosis to decrease negative
experiences and outcomes associated with SSD.
Practical Implications: This study has practical implications for improving our understanding of what
single-sided deaf patients need and for health professionals to offer better care to current and future
populations impacted by single-sided deafness.
© 2019 Elsevier B.V. All rights reserved.
1. Introduction
Single-sided deafness (SSD) refers to severe-to-profound
hearing loss (!70 dB HL) in one ear while having nearly normal
hearing in the other (À10–15 dB HL) [1]. Although the global
incidence figures of SSD is unknown [2], there is an estimated
60,000 individuals diagnosed with SSD in the United States [3] and
more than 9000 new cases in the United Kingdom [4] each year.
There are several causes of SSD reported such as sudden
sensorineural hearing loss (SSNHL), Meniere’s disease, acoustic
neuroma, bone fractures, ear infections, and congenital diseases,
but there is also a myriad of unknown causes [5]. Individuals with
SSD face many unique challenges related to hearing in noisy and
complex environments, specifically localizing sound sources,
spatial positioning to maximize hearing, and physical outcomes
like vertigo and tinnitus [6]. Because of some of the physiological
challenges to having SSD, there are various options for aided
hearing to cope with these difficulties. However, many individuals
with SSD do not opt-in for aided hearing devices and even those
who do opt-in are not completely satisfied [7].
There are also social and psychological implications of SSD [8].
Studies found that individuals with SSD reported increased stress
levels in social settings [9,10] and higher levels of social isolation
[10]. Patients with SSD have listening fatigue, reduced quality of
life, decreased levels of confidence and self-esteem [11], and
experience other psychosocial consequences [10,12]. Post diagnosis
of SSD, individuals report increased anxiety levels about losing
hearing in their other ear, embarrassment related to the social
stigma of hearing loss, and decreased social interactions [8].
Post diagnoses of SSD, many individuals are most likely
surrounded by a network of family members and health
professionals that can influence some of these communication
and social interaction outcomes [13]. While the complexities and
nuances of SSD have led scholars to identify certain outcomes of
being diagnosed with and having SSD, fewer studies have focused
* Corresponding author at: Department of Communication, University of
Cincinnati, 120B McMicken Hall, Cincinnati, OH, 45221, USA.
E-mail address: changpf@ucmail.uc.edu (P.F. Chang).
https://doi.org/10.1016/j.pec.2019.10.009
0738-3991/© 2019 Elsevier B.V. All rights reserved.
Patient Education and Counseling 103 (2020) 530–536
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journal homepage: www.elsevier.com/locate/pateducou
on the specific challenges that individuals with SSD face post
diagnosis, in particular their difficulties communicating and
interacting with family members and health professionals.
Identifying the challenges of individuals with SSD, especially
when it comes to their social and medical interactions, can then
help inform us about patient and family-centered approaches to
health care as well as illuminate how we can craft interventions,
programs, or extensions of theories that can further be tested.
Therefore, this qualitative study explores what communication
and social challenges individuals face post diagnosis of single sided
deafness, regarding their social and medical network. Identifying
these challenges and better understanding them through the lens
of patient and family-centered care approaches could help us
better understand why individuals may experience such detrimental
outcomes and explain the contributing contextual barriers.
The findings from this study can also shape key recommendations
for health providers of SSD.
2. Methods
2.1. Participants
Study participants included 52 patients with SSD. Inclusion
criteria limited the sample to any individual who was 18 years and
older and diagnosed with SSD, whether they have an aided hearing
device or not. Participants were recruited through multiple social
support Facebook groups for individuals with SSD, and through
snowball sampling, which is particularly effective for hard-toreach
populations. The participants reside in different states in the
United States and various countries around the world including
Germany, the United Kingdom, and Australia. Of the participants,
36 identified as female and 16 identified as male. The participants
ranged from 18 to 69 years old (M = 45, SD = 14). Many of the
participants were unable to identify the cause for their SSD, but for
the participants who were able to identify the cause, the causes
include acoustic neuroma, bacterial meningitis, and Ramsay-Hunt
Syndrome (see Table 1 for participant information).
2.2. Data collection
After obtaining Institutional Review Board approval from the
authors’ associated institution, the first author reached out to SSD
social support groups on Facebook that could help with participant
recruitment. Some social support group moderators required the
completion of confidentiality forms and applications for recruitment
purposes, which the author completed. Following moderator
approval, the first author posted a recruitment letter on the main
Facebook page of the social support groups. Individuals interested
in participating in the study contacted the first author directly to
schedule an interview. All the interviews were conducted over the
phone or Skype.
The author obtained verbal informed consent from the participants
by reading awritten informed consentform that was alsosent
to the participant through email so each participant would have a
copy. The semi-structured interviews took place from April 2018 to
October 2018 and the interviews lasted between 43 to 100 min.
Semi-structured interviews were used to explore and probe for key
elements,aswell asto askfollow-upquestions [14].Semi-structured
interviews also allow for flexibility to avoid limiting the field of
inquiry and for the interview to naturally take form [15].
2.3. Data analysis
The interviews were audiotaped, transcribed verbatim, and
edited to remove any identifiers. Additionally, confidentiality of all
participants was maintained by omitting all personal references
that may have identified the individuals with the interview
transcripts. Each participant was given a number that corresponded
to the interview transcripts (Pn). To further protect participants’
privacy, we used pseudonyms following each quotation in the
findings section used to illustrate the study’s findings. After all the
authorsreadthrough the interview scripts multiple times to become
acquainted with the data, the authors imported the transcripts into
Dedoose, a qualitative data analysis software for categorization. We
conducted data analysis by using iterative and thematic coding [15].
The authors identified key themes around factors that patients
identified as communication and social challenges regarding their
medical teams and their family members following SSD diagnosis.
We then grouped excerpts with similar codes and wrote a series of
memos analyzing those responses during all phases of analyses to
highlight key themes and relationships in the data, refine categories,
and ensure a close association between participants’ responses and
emerging analyses. The research team met regularly to debrief, code
interviews together, and reconcile all discrepant cases until
agreement was reached. After distinct concepts and categories were
identified,extracted,andagreedupon,focusedcodingwasemployed
where thematic codes were systematically applied to all of the data.
3. Findings
The findings are organized to highlight themes that emerged
from the data, illuminating the communication and social
challenges that patients with SSD identified, regarding their social
and medical network.
3.1. Family members are a critical component to the quality of health
care during and after SSD diagnosis
3.1.1. Patients increase their reliance on family members, which
decreases their sense of autonomy
Participants emphasized that SSD affects all members of the
family especially because patients with single sided deafness
become more reliant on them. Samantha, who has been SSD for 5
years, P15, stated that she went from being able to do everything to
being able to do nothing herself, which decreased her sense of
autonomy (Table 2, quotation 1). Many participants also expressed
feelings of helplessness because they increased reliance on their
partners or adult children to do everyday tasks for them like
answering the phone or asking them to repeat what others have
said. Florine, who has been SSD for 3 years, P10, said that she feels
like a completely different person because she went from being
someone who was so independent and proactive about doing
everything herself to asking her husband and children to do things
for her like ordering for her at restaurants (Table 2, quotation 2).
3.1.2. Communication quality changes with family members
A common challenge that patients with SSD identified was how
much family dynamics change post diagnosis, consequently
resulting in a myriad of emotions and negative experiences, such
as denial, anger, isolation, and impatience. Participants emphasized
how much their relationships changed with their significant
other because of their SSD. Annette, who has been SSD for 10 years,
P14, said that her SSD affects her partner equally because of the
social isolation that they both experience. Because Annette’s
partner does not want to leave her alone, he also stays isolated
(Table 2, quotation 3). Participants also emphasized the increase in
marital turbulence post diagnosis of SSD. Lily, who has been SSD
for 7 years, P37, said SSD increases emotional and relational
turbulence in marriages so much so that couples contemplate
separation and divorce (Table 2, quotation 4). In addition to
challenges between significant others, many participants
highlighted the issues they face with their children post diagnosis.
P.F. Chang et al. / Patient Education and Counseling 103 (2020) 530–536 531
Participants reported that their children oftentimes felt anger and
annoyance because they felt like they were not being heard or
because they would have to repeat themselves multiple times.
Paula, who has been SSD for 15 years, P51, said that her daughter
was quicker to anger because of the change in communication
quality. Her daughter would oftentimes yell at her and would get
frustrated because Paula could not hear her the first time (Table 2,
quotation 5).
3.1.3. Information discrepancy and family members’ emotional
reactions
Several participants discussed how family members, including
spouses, parents, adult children, and teenage children made the
coping process more or less difficult after SSD diagnosis, depending
on the level of knowledge that the family members had about SSD.
The discrepancy in levels of knowledge caused partners of patients
with SSD to experience frustration and impatience, and children of
patients with SSD to feel uncertainty and anger. Tabetha, who has
been SSD for 17 years, P6, expressed that her family members do
not understand SSD and they never had experience with anyone
who had hearing loss so it is difficult for them to have empathy and
understand what it is like being SSD (Table 2, quotation 6). Many
participants emphasized the strong emotional reactions that their
family members had and patients assumed a lot of it came from
their lack of knowledge about SSD. Max, who has been SSD for 22
years, P50, elaborated on all the emotional backlash he got from his
Table 1
Sociodemographic information about participants.
Participant (n) Sex of
Participant
Cause for SSNHL/SSD Age/Number of years with
SSD
Aided Hearing Device Residence Location
1 M Vestibulocochlear nerve
infarction
64/2 Cochlear Implant Oregon, USA
2 F Unknown 58/1 None Massachusetts, USA
3 M Acoustic Neuroma 56/12 None Oregon, USA
4 F Unknown 21/10 None Oregon, USA
5 M Unknown 53/13 BAHA and then Cochlear Implant New York, USA
6 F Unknown 58/17 BAHA Wisconsin, USA
7 M Acoustic Neuroma 54/3 CROS hearing aid Washington, USA
8 F Acoustic Neuroma 43/22 BAHA Wisconsin, USA
9 M Unknown 55/20 CROS hearing aid UK
10 F Acoustic Neuroma 51/3 BAHA New Jersey, USA
11 M Unknown 65/59 None Oregon, USA
12 F Unknown 58/38 CROS hearing aid Oklahoma, USA
13 F Bacterial Meningitis 47/7 CROS hearing aid Pennsylvania, USA
14 F Unknown 38/10 CROS hearing aid Illinois, USA
15 F Unknown 59/5 BAHA Michigan, USA
16 M Acoustic Neuroma 59/23 Ponto bone anchored hearing
system
Pennsylvania, USA
17 F Unknown 56/2 Cochlear Implant Berlin, Germany
18 F Unknown 55/5 BAHA Florida, USA
19 M Acoustic Neuroma 36/7 Phonak CROS hearing aid Arkansas, USA
20 F Unknown 49/1 BAHA Illinois, USA
21 F Acoustic Neuroma 69/11 BAHA Washington, USA
22 F Unknown 34/1 CROS hearing aid Australia
23 F Unknown 42/3 CROS hearing aid Kentucky, USA
24 F Ramsay-Hunt Syndrome 66/5 BAHA Washington, USA
25 M Unknown 46/1 BAHA New York, USA
26 F Unknown 22/5 BAHA Florida, USA
27 M Unknown 64/30 CROS hearing aid New York, USA
28 F Unknown 33/7 None Colorado, USA
29 M Unknown 30/8 None Kentucky, USA
30 F Unknown 54/30 None Maryland, USA
31 M Unknown 55/15 None New York, USA
32 F Unknown 56/3 Cochlear Implant Basel, Switzerland
33 F Mumps (assumption) 36/27 None Birmingham, United
Kingdom
34 M Unknown 42/21 None Akureyri, Iceland
35 F Unknown 28/2 None London, United Kingdom
36 M Unknown 35/1 None Cowdon, United Kingdom
37 F Unknown 29/7 CROS hearing aid London, United Kingdom
38 F Flu (assumption and self
diagnosed)
22/4 None Nuevo Leon, Mexico
39 F Acoustic neuroma tumor 18/11 CROS hearing aid Michigan, USA
40 F Unknown 50/15 None Wuppertal, Germany
41 M Unknown 35/20 None Arizona, USA
42 F Mumps 40/29 None Arizona, USA
43 F Unknown 38/7 CROS hearing aid Oregon, USA
44 F Head injury 20/6 None California, USA
45 F Unknown 62/8 None Texas, USA
46 F Unknown 33/6 CROS hearing aid Alabama, USA
47 F Unknown 30/3 None California, USA
48 F Unknown 42/15 Cochlear implant Stuttgart, Germany
49 F Unknown 36/1 None Sainsbury, United Kingdom
50 M Head trauma 44/22 CROS hearing aid Gyomro, Hungary
51 F Acoustic Neuroma 50/15 None California, USA
52 F Unknown 28/7 Cochlear implant North Carolina, USA
532 P.F. Chang et al. / Patient Education and Counseling 103 (2020) 530–536
Table 2
Communication and social challenges that individuals with SSD face regarding their social and medical network post diagnosis: Categories, sub-themes, and demonstrative
quotes.
Category / subtheme
For overall sample; N = 52
Demonstrative Quotes
Family members are a critical
component to the quality of health
care during and after SSD diagnosis
Patients increase their reliance on family
members, which decreases their sense of autonomy
Communication quality changes with family members
Information discrepancy and family members
emotional reactions
1. “So, I think they don't understand. It impacts the whole family and I think the family needs some education.
Especially with a sudden loss because you go from being perfectly capable of doing everything to hardly being able
to do anything. So, just to involve the whole family in the treatment and not just the patient . . . I also think these
programs would be better if they used layman’s terms so they really understand what I’m going through and how
bad it is. It’s not the same when doctors talk to family members themselves and just explain things about my SSD
with fancy medical words. It would be helpful for everyone involved if families were educated formally because it
really does affect family structure and dynamics when you have sudden hearing loss and that kind of stuff. (P15)
2. “I feel like a totally different person since I have been diagnosed with SSD. My whole life I was so independent
and I never asked for help. I was really depressed after I lost my hearing in my left ear because I had to rely on and
ask my family to do everything for me. It’s gotten better but I still have to ask them to repeat things that other
people have said or order for me at restaurants. Even basic house things like picking up the phone? I have to ask
them to do that. I feel helpless and not helpful around the house. I’m still getting used to it. I’ve gone almost 45+
years without asking for much help with anything and now I’m always calling on my husband and children.” (P10)
3. “Family counseling to help reduce the amount of frustration that happens in the family would have been so
helpful. Hearing loss impacts family dynamics drastically and sometimes affects the partner just as equally as the
person who has it because of the social isolation. The partner doesn't want to abandon their spouse so they stay
isolated too. And it impacts both of their lives.” (P14)
4. “I am so grateful that my marriage is a blessing to me because I hear stories about marriages that are in turmoil
after someone experiences sudden hearing loss. They’re always threatening divorce and there’s all this and it’s like
they need help. Options should be given to families for counseling and have other people, not the patient, as “ok do
you need to speak to someone too?” or because it’s going to be emotional, you may also go through some
emotional turbulence so we are offering counseling to you, to you and your partner, etc. This would be a big help
for married couples where one person is diagnosed with single sided deafness.” (P37)
5. “It goes beyond the person who is actually going through losing hearing. It would have been helpful if there was
family counseling, especially for my kids. I have teenagers and I feel like they sometimes, well actually my
daughter especially she feels . . . angry, I suppose . . . when she’s talking to me She has a tendency to look at me
and yell do you have your hearing aids in? I can’t tell if it’s just her being a teenager or if she is actually angry and
annoyed with my single sided deafness. Perhaps it’s both, but either way I think especially for my daughter it
would have been helpful to get family therapy after I was diagnosed.” (P51)
6. “I think the thing I would have liked most after I found out I was single-sided deaf is if there had been some class
or program for the whole family. The family still doesn't really understand. I'm getting better at trying to explain it
now, but they haven't had experience with anybody with hearing loss, so they don't really get it. It would have been
less taxing on me if they learned about my single-sided deafness from a professional or if there was some type of
family therapist that could have walked them through ways to help me or help themselves” (P6)
7. “First I thought it would just be my wife, but then it was my children too. My wife was so angry and sad at the
same time because our conversations would last a long time when I had a hard time hearing her. Sometimes she
would just give up and we would end conversations early. It helped when I learned how to position myself better.
My children would be embarrassed of me. The older they get I think they get less embarrassed but in public they
would get frustrated. They all never knew anyone who could not hear well before me so they don’t have that
empathy for me. When sometimes I think it is getting better, but I still feel all their intense feelings towards me. It
is all sad to me.” (P50)
Disparate, disconnected, and hard to
reach medical professionals
Patients with SSD interact with multiple
medical professionals
Patient’s lack of knowledge in what to
anticipate post diagnosis
8. “The first person I went to was just an audiologist where they did a hearing test on me. They determined that I
had sensorineural hearing loss. So the next person I went to go see was an ENT who had studied with my brother. I
knew him, I trusted him. He had his audiologist in the office also take a look at me. Anyway long story short I saw
different ENTs and different audiologists just to see if anyone could pinpoint why this was happening to me. I even
saw a neurologist, one that specifically studies the ear and the nerves of the ear and has a little bit more experience
with it. I went all over the place and I was hearing all different things. I wish that there was just one team where
everyone had a different role and function. I wish there was a team where the ENT, the audiologist, the neurologist,
the therapist even, all knew each other and talked with one another so there was no conflict. I think seeing so many
different people caused even more anxiety for me.” (P43)
9. “Specialists that have to do with the ear should all work together. For example, therapists, psychologists, people
who would help you more socially and emotionally with people who help you physically like your ENT and
neurosurgeon. I made an appointment at the tinnitus center in Berlin today to get some psychological help and I
had to call 10 to 15 different phone numbers to also get help with my actual hearing and emotional help. It would
have been time efficient if they just knew who I should or could contact.” (P17)
10. “I was really lucky that I was already art of a support group online. Towards the beginning, right after I knew I
had single-sided deafness, I was having a lot of issues with it and the healing process and all that. So I was
messaging with, I guess thecreator of one of the groups. And she was really, really very helpful and she gave me a
lot of advice on what she did with her daughter and just kind of guided me through the first few days after the
procedure. If they had an official guider or some sorts to help me during and after the procedure where I
experienced SSD that would have been great. Almost like I was the blind sheep and someone would have the job of
a shepard of leading me until I could get the hang of surviving on my own. The shepard or whatever that role would
be called would not just help with functional things like teaching me to sit on one side of the room or how to get by
but also with the emotional rollercoaster I might go through.” (P18)
11. “And if there could be a way to somehow give people the guidance initially when this happened to them, “okay,
there’s these things that are gonna happen to you, this is what you need to do, you know, these are the steps to
take. There’s these options if you’re faced with this, with your spouse or if you’re emotionally this way, this is
options for you.” There needs to be some way to..like lead someone to where they need to get to be okay with this
whole thing.” (P20)
P.F. Chang et al. / Patient Education and Counseling 103 (2020) 530–536 533
wife but also his children. He attributed the anger, sadness,
embarrassment, confusion, and frustration to how much they do
not know about SSD and the lack of empathy they had for him
because of their lack of knowledge (Table 2, quotation 7).
3.2. Disparate, disconnected, and hard to reach medical professionals
3.2.1. Patients with SSD interact with multiple medical professionals
Many participants expressed their anxiety and frustration from
having to consult different kinds of specialists at various medical
practices. Patients reported that their dissatisfaction with their
health care providers oftentimes stemmed from conflicting
diagnoses, treatments, and constant referrals. Carla, who has been
SSD for 7 years, P43, expressed her frustration with seeing several
specialists and how the process caused her anxiety because of their
conflicting views (Table 2, quotation 8).
Participants also expressed the overemphasis on the physiological
aspects of being diagnosed with SSD over the emotional
components of coping with the diagnosis. Patients with SSD
expressed a need for social, emotional, and psychological help. For
example, Sasha, who has been SSD for 2 years, P17, expressed her
frustration about having to reach out to so many health
professionals before having access to psychological help, specifically
related to her hearing loss. She expressed the myriad of
emotions she experienced post diagnosis and the need for a
therapist but the difficulty of getting access to one (Table 2,
quotation 9).
3.2.2. Patient’s lack of knowledge in what to anticipate post diagnosis
Participants discussed how they felt a lack of guidance and
advice post diagnosis of SSD. They did not know what to anticipate
after certain procedures related to their SSD or how to cope
emotionally after being diagnosed with SSD. Karen, who has been
SSD for 5 years, P18, expressed that she needed functional advice
on things like where to sit in a room to maximize hearing but also
emotional guidance on how to cope with new experiences post
diagnosis. She emphasized the different kinds of hardships post
diagnosis that she was unable to anticipate (Table 2, quotation 10).
Other participants stated that the challenge they faced post
diagnosis was not knowing what to anticipate might happen after
every step in the coping process. For example, Rita, who has been
SSD for 1 year, said she did not know what steps to take after
certain procedures or what options she may or may not have
related to her SSD diagnosis or what kinds of emotions she may
experience (Table 2, quotation 11).
4. Discussion and conclusion
4.1. Discussion
This study provides new insights into the communication and
social challenges that patients with SSD face post diagnosis,
especially regarding their network of family members and health
professionals. Patients with SSD emphasized how family members
are a critical component to the quality of their care, during and
after diagnosis. A challenge that patients with SSD point to is the
increased reliance on family members. Another challenge that
participants also identified is adjusting to changes in communication
quality that occur post diagnosis, which consequently alters
the dynamics of the family unit. This type of impact on family
members of someone with a newly diagnosed health condition is
consistent with what is referred to as third party disability [16].
Third party disability research has found that patient- and familycentered
care (PFCC) approaches can be effective as part of the
treatment process post diagnosis [17–19]. While PFCC has been
shown to help address the multidimensional components
associated with a diagnosis of full hearing loss; this study finds
that the framework can also be applicable to SSD. This is important
because some might assume that individuals with SSD do not need
support because they still retain some hearing function, but this
study found that individuals with SSD face many of the challenges
(e.g., emotional, cognitive, interpersonal, behavioral, and physical)
that do necessitate PFCC.
Individuals who have SSD experience negative emotions such
as denial, anger, depression, isolation, resentment, and even
feelings of jealousy that their hearing partners have a more
favorable relationship with other hearing family members [12,20],
to the extent that some patients with SSD describe their post
diagnosis a mourning process [21]. Existing research shows that
family therapy can help all members of the family with making
sense of the impact of a health condition. In many chronic health
contexts, families that participated in family focused treatment
implemented effective communication and problem-solving skills
as part of a collective coping process [22]. Tools like goal sharing for
partners strategy (GPS) also provides a framework for families to
set communication goals and to achieve them together [23]. The
key question for family therapy is what types of customized
behavioral and cognitive intervention strategies are given to family
members based on the illness. Whereas existing research into
functional family therapy has been mainly applied to contexts of
mental health concerns, drug abuse, and other related family
problems, these have to do with questions of addiction and how
families may enable or accentuate the problem [24–26]. The SSD
context is more about a sudden change in physiology, which results
in family communication challenges that are unique to SSD. By
identifying key barriers as part of third party disability dynamics
combined with the negative emotions and experiences of the
patient with SSD (i.e., when patients with SSD ask family members
to repeat phrases repeatedly or when there is marital tension
because of communication breakdowns, relationship tensions, and
frustration [27]), this study sheds light on specific challenges that
could inform a more systematic coping process like family therapy.
Participants discussed how the varying levels of knowledge
about SSD across family members made the post-diagnosis
transition stressful and frustrating. This discrepancy in knowledge
may stem from different causes, one of which may be explained by
the patient serving as the main message transmitter about their
SSD. Oftentimes, patients who are diagnosed with a health
condition are the ones that relay information to their family
members, and because patients are emotionally charged when
receiving such information, or because patients are hesitant and
reluctant to talk to others about certain things they hear from their
physicians, and patients skew or change information to be
accommodating for their partner [20], information discrepancy
occurs. Having family members involved in information acquisition
at the time of diagnosis have been proven to be effective in
increasing the quality of health care for patients in multiple
chronic health condition contexts [28–31]. This study advances the
need to apply family information acquisition at the time of
diagnosis of SSD to alleviate negative emotions caused by
knowledge discrepancy post diagnosis.
This study also found that participants experienced stress from
seeking multiple health professionals, anxiety from different
specialists with conflicting views, and frustration from information
uncertainty. Participants also emphasized the importance of
their socioemotional health after being diagnosed with SSD and
discussed how therapists’ roles on these medical teams could help
familiarize them with the social and psychological impacts of SSD.
Existing studies found that interdisciplinary health care teams,
consisting of family caregivers and multiple health care specialists
collaborating to develop holistic plans for a patient’s needs, leads
to increased health literacy, better patient-provider relationships,
534 P.F. Chang et al. / Patient Education and Counseling 103 (2020) 530–536
increased psychosocial counseling, and increased communication
frequency between family members, patients, and health care
providers [32]. When multiple doctors collaborate on one case
together, there is an improvement of the reliability of diagnosis,
reduced numbers of mistakes, and increased education enrichment
for the health professionals involved [33]. The findings
regarding the negative emotions experienced by disconnected and
disparate medical teams offer evidence that multifaceted and
interconnected medical teams may advance the quality of health
care for individuals with SSD.
Many participants expressed a common challenge post
diagnosis of SSD to be uncertain of what to anticipate physically,
emotionally, and socially. In certain health contexts, there have
been efforts to implement patient navigation, which is the process
of helping patients effectively and efficiently use the health care
system (i.e., choosing, understanding, and using health coverage,
health providers and services, treatment decisions, and managing
multiple provider care) [34] to address and overcome barriers. The
primary context in which patient navigator training programs have
been evaluated is in cancer care [35,36], where the implementation
of patient navigators has been proven to increase patient selfefficacy
for engaging in recommended health behaviors and
increasing perceived levels of social support [37,38]. The findings
of this study demonstrate the need for patients’ with SSD to have
access to patient guides to give them advice during decisionmaking
processes related to aided hearing interventions,
emotional complexities patients may go through, and coping
processes. Future studies could implement patient navigation
programs to other chronic and long-lasting health conditions
[39,40] to evaluate the effectiveness for health conditions like SSD;
consequently, it could highlight how existing patient navigation
programs could extend beyond preventative measures and
overcoming functional barriers and extending it to other phases
of a patient’s health process.
Taken together, the findings from this study provide an
important contribution to SSD literature by highlighting the
rationale for a patient- and family-centered approach to health
care in the SSD context, family information acquisition, and patient
navigation systems. However, this study had a few limitations that
need to be considered. Although many of the findings focused on
family dynamics, this study only evaluated one family member’s
perspective. Future studies should focus on multiple family
members and their perspectives with coping with SSD to provide
a more holistic perspective. Additionally, this study primarily
recruited from social support groups online, meaning that
participants of this study were already actively seeking support.
It is recommended that future studies should recruit participants
from various sources to have a more diverse range of participants,
including those who may not have much of a support network.
4.2. Conclusion
A diagnosis of SSD is a life-changing event for individuals and
families. Many studies have found that a SSD diagnosis leads to
negative outcomes for patients, which makes it imperative to
understand why that is and how we can prevent them. Beyond a
strictly medical based explanation for these outcomes, this study
finds that many of the key factors that contribute to these are
communicative and social, whether it is family dynamic changes,
anxiety about future medical issues, or uncertainty due to
conflicting medical recommendations. By illuminating communicative
and sociological factors that contribute to negative outcomes
and building existing approaches to health care to identify
what may help individuals with SSD in the post diagnosis phase of
their health care, this study can benefit health providers by
identifying gaps and implementing protocols to improve care
during and after a SSD diagnosis. By advancing our understanding
of the patient’s perspectives around SSD, we can facilitate
improved education of SSD family members, help scholars,
medical professionals, and policy makers working on SSD, and
consequently help SSD impacted communities and future patients.
4.3. Practical implications
This study has real-world practical implications for multiple
industries and fields such as medicine, education, and communication.
While medical diagnoses and counseling are often centered on
the individual, this study found that a broader focus is necessary,
based on first-hand SSD experiences. Because individuals with SSD
diagnoses are likely to need support from multiple stakeholders
including family members, it is recommended that diagnoses and
counseling be directed toward family units, as opposed to just the
patient. This could help prevent negative outcomes of SSD such as
social isolation, stigma, and interpersonal conflict. Regarding
medical teams, patients with SSD report being confused, anxious,
and stressed by the wide range of specialists and medical
professionals they encounter. Because SSD requires expertise from
several areas (e.g., audiologists, ENTs, therapists, etc.), patients could
work with integrated teams of experts that work collectively, as
opposed to receiving individual expert knowledge that can be
fragmented and potentially contradictory. Because the period of
diagnosis is stressful, minimizing confusion in this period is
especially important. As patients continue to live with SSD over
time, they mayexperience negative health and emotional outcomes,
which could be mitigated by patient navigators. Although some of
these recommendations may require a broad reorganization
of certain medical practices and processes, others are as simple as
broadening the members who hear the initial diagnosis and offering
counseling services. These recommendations have practical implications
for improving our understanding of what patients with SSD
want and for health professionals to offer better care to current and
future populations impacted by SSD.
Funding
This work was supported by the University of Cincinnati Office
of Research Integrated Research Advancement Grants Program.
Disclaimer
I confirm all patient/personal identifiers have been removed or
disguised so the patient/person(s) described are not identifiable
and cannot be identified through the details of the story.
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