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Family-Centered Care:<br />
A <strong>publication</strong> <strong>overview</strong><br />
Family-Centered Care is an approach to healthcare that recognizes the vital<br />
role that family plays. It considers the patient and his / her family members<br />
as partners in the planning, execution and monitoring of the treatment. FCC<br />
has become a success model in healthcare over the last decade, and it is now<br />
finding its way into hearing healthcare.
Family-Centered Care<br />
<strong>Phonak</strong> Position Statement<br />
02
03
Audiology Past & Present<br />
Audiologic care for adults with hearing<br />
loss is largely provided along a continuum<br />
book-ended by two perspectives: a “site-oflesion”<br />
perspective and, more recently, a<br />
“family-centered” perspective. The site-oflesion<br />
perspective, described in greater detail<br />
by Pichora-Fuller and Singh, 6 considers the<br />
auditory system as consisting of functionally<br />
discrete anatomical units that are connected<br />
in a largely bottom-up serial fashion. When<br />
audiologic care is provided from a site-oflesion<br />
perspective, the role of the audiologist<br />
is to determine the location or type of<br />
“lesion” (eg, conductive, sensorineural, retro-cochlear,<br />
etc), to quantify the magnitude<br />
of a hearing loss (eg, mild, severe, etc), and<br />
to develop an appropriate set of treatment<br />
recommendations (ie, continued monitoring,<br />
referral to other medical professionals,<br />
use of hearing assistive technology, etc).<br />
The site-of-lesion perspective has greatly<br />
advanced the field by equipping audiologists<br />
with the ability to perform diagnostic<br />
tests, the results of which are linked to specific<br />
treatment recommendations. However,<br />
clinicians and researchers have come to<br />
recognize several limitations of this framework.<br />
Chief among them are the failures of<br />
the site-of-lesion perspective to consider a<br />
person holistically and to underemphasize<br />
the cognitive, emotional, motivational, and<br />
social factors that contribute to treatment<br />
success. Furthermore, a site-of-lesion perspective<br />
overemphasizes the role of technology<br />
in audiologic rehabilitation 7 rather than<br />
considering it as a component of the care<br />
necessary for treatment.<br />
The second perspective, family-centered<br />
care, describes the implementation<br />
of healthcare that considers the individual<br />
using healthcare services and his/her family<br />
members as partners in the planning, execution,<br />
and monitoring of treatment. Familycentered<br />
care is an extension of patientcentered<br />
care that places greater emphasis<br />
on the role of family. A discussion of the<br />
distinctions between family- and patientcentred<br />
care is beyond the scope of this<br />
article; however, both frameworks underscore<br />
similar core concepts discussed below.<br />
Because hearing loss affects both the person<br />
with hearing loss and significant others, we<br />
suggest the term “family-centered care” is<br />
better suited for audiology and will use this<br />
term throughout the paper.<br />
What Does Family-Centered Care<br />
Mean?<br />
From a family-centered care perspective,<br />
patients and family members are both<br />
considered experts who work along with the<br />
clinician whenever decisions are to be made.<br />
This is a particularly key concept because no<br />
one understands their needs better than they<br />
do. Although there is no globally accepted<br />
definition of family-centered care, we favor<br />
the following description from the Institute<br />
of Medicine:<br />
Family-centered care provides care to patients<br />
and family members that is respectful of and<br />
responsive to individual patient and family preferences,<br />
needs, and values, and ensures that patient<br />
and family values guide all clinical decisions. 8<br />
Importantly, in family-centered care,<br />
the needs of both patients and family<br />
members are recognized, with both the<br />
patient and family considered central in<br />
any clinical exchange. 9 “Family” includes<br />
two or more people who are related in<br />
any way, be it through a continuing biological,<br />
legal, or emotional relationship.<br />
Thus, family is a broad and encompassing<br />
concept that includes any individual<br />
who plays a significant role in a patient’s<br />
life. 10,11 Patients themselves define the<br />
components of their “family” and it can<br />
range from including just themselves to<br />
including partners, friends, and children<br />
in their treatment.<br />
Recent research looking at the preferences<br />
of those attending audiology appointments<br />
all point to the same conclusion—that<br />
both patients 12-14 and family members 15,16<br />
report a clear preference for greater involvement<br />
of patients and family members during<br />
the audiologic care process. Note that<br />
this does not imply that all information and<br />
decision-making is shared with the patient.<br />
A basic tenet of patient-centered care is<br />
that together, the provider and patient must<br />
come to an agreement about the role of the<br />
patient (and family) in selecting treatment<br />
options. 17<br />
One common misconception about<br />
family-centered care is that its broader<br />
adoption would be problematic because of<br />
the concern that it may be inappropriate<br />
for some individuals. For example, there<br />
are those patients who prefer to provide<br />
minimal input regarding their care and<br />
treatment, while others may prefer not to<br />
involve family members. 18 Critically, when<br />
care is provided from a family-centered<br />
care perspective, an attuned clinician will<br />
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aPriL 2016 i hearingreview.com 17
ReseaRch // Family-Centered Hearing Care<br />
10 Recommendations to Implement<br />
Family-Centered Care<br />
1) Invite a family member along to audiologic appointments. When making appointments<br />
say: “Our experience is that it is very helpful if you can bring a friend or a loved one along to the<br />
appointment. Who would that be?” If patient asks for more information, you could say “There is a<br />
lot to discuss and it helps to include family and friends in the process.” This information should be<br />
reinforced in any written information provided to patients regarding appointments.<br />
2) Set up the physical environment so that family are comfortably included in the<br />
consultation rather than being relegated to a seat at the back of the room. An inclusive physical<br />
environment fosters a sense that everyone can equally provide their thoughts and perspectives.<br />
3) Start the appointment by letting the patient and the family member know that<br />
input will be sought from both of them—patient first and then the family member. The<br />
clinician could say “We are going to do a lot today. For the next 10 minutes, I want to find out about<br />
your hearing and communication (directed to the patient) and then I want to find out about this from<br />
your perspective [directed to the significant other].” The goal is to listen so as to attain an integrated<br />
understanding of the patient’s and family’s physical, social, and emotional needs.<br />
4) Set joint hearing and communication goals with patient and family. Discuss what<br />
they would both like to achieve (eg, TV at a lower volume, easier conversation) and prioritize together.<br />
The Client Oriented Scale of Improvement (COSI) 48 could be used or the Goal-Sharing Partnership<br />
Strategy (GPS). 49<br />
5) Present options for rehabilitation that address the needs and goals of both the<br />
patient and the family. For example, whereas a hearing aid alone can address the problem of<br />
communicating with one’s spouse at the dinner table, a hearing aid and a remote mic can be used<br />
when trying to communicate across greater distances.<br />
6) When developing the treatment plan, aim for shared decision-making, with patient,<br />
family, and clinician as equal partners in the process. Use decision aids to guide discussions about options<br />
for hearing rehabilitation (see Laplante-Lévesque, Hickson, and Worrall 50 ). Decision aids provide a simple<br />
summary of all options and the advantages and disadvantages of each. Confirm there is a mutual understanding<br />
of all communication goals.<br />
7) Remember that the patient and the family are the experts. They live with the hearing<br />
loss every day. For example, the patient and family could be asked “What do you want to do about<br />
your hearing loss?”<br />
8) Actively encourage involvement of the family at all stages of the care process (eg,<br />
history taking, rehabilitation planning, hearing aid fitting, follow up, and annual reviews).<br />
9) Measure outcomes of interventions for both the patient and the family. You could<br />
revisit the goals identified at the start by both patient and family and find out how much the treatment<br />
has affected those goals. There are many outcome measures for patients and a smaller number for<br />
family that could also be helpful: the Significant Other Scale–Hearing (SOS-HEAR) 51 and the Hearing<br />
Impairment Impact–Significant Other Profile (HII-SOP). 52<br />
10) Make the entire clinic family-centered with buy-in from all stakeholders (executives,<br />
managers, clinicians, and front office staff). Put family-centered care on the agenda of regular<br />
staff meetings.<br />
be responsive to individual needs and will<br />
always provide treatment that respects the<br />
wishes of the patient.<br />
Benefits for the Patient from Family-<br />
Centered Care<br />
Family-centered care has become<br />
internationally recognized as a dimension<br />
of high-quality health provision. While<br />
most research has been conducted outside<br />
of audiology, the broad consensus is<br />
that family-centered care results in superior<br />
health outcomes, particularly along<br />
dimensions such as patient well-being<br />
(less symptomology), adherence to treatment<br />
recommendations, and satisfaction<br />
with medical services 19 (see Rathert et al 20<br />
for a review).<br />
Similarly, research conducted in audiology<br />
has demonstrated that outcomes<br />
are improved when family is engaged.<br />
For example, the family of patients with<br />
hearing loss can encourage help-seeking<br />
and advocate for the adoption of hearing<br />
instruments, 13,21,22 provide instruction<br />
on the proper use and care of devices, 23<br />
increase a person’s confidence that they<br />
can manage their hearing loss, 24 decrease<br />
hearing handicap when accompanying<br />
patients to audiologic rehabilitation<br />
classes, 25 and reinforce the importance<br />
of adhering to treatment recommendations.<br />
26,27 Correlational evidence also<br />
suggests that the involvement of family<br />
best differentiates successful users of<br />
hearing aids from unsuccessful users of<br />
hearing aids 28 and is the best predictor<br />
of hearing aid satisfaction. 29 In a<br />
recent study, audiologists also identified<br />
a number of benefits to involving family<br />
members in audiological care, including:<br />
increased family member input and support<br />
into rehabilitation decision-making,<br />
improved provision of information to<br />
both patients and family members, and<br />
importantly, the provision of emotional<br />
support for the patient. 16<br />
Benefits for the Family from Family-<br />
Centered Care<br />
The literature suggests that there are<br />
both direct and indirect benefits for family<br />
and communication partners attending and<br />
participating in audiology appointments.<br />
Direct benefits include greater awareness<br />
of the effect of hearing impairment for<br />
18 hearingreview.com i aPriL 2016<br />
05
the patient 30 and less reported third-party<br />
disability 31 following audiologic rehabilitation.<br />
Because involvement of family and social<br />
networks increases treatment uptake and<br />
improves the outcomes of audiologic care,<br />
the downstream indirect benefits for family<br />
members include improved relationship<br />
quality and quality of life. 32<br />
Benefits for the Clinician from Family-<br />
Centered Care<br />
Research conducted both in audiology<br />
and other areas of healthcare suggests several<br />
positive outcomes when care is provided<br />
using concepts consistent with family-centered<br />
care. Preminger et al 33 suggest<br />
that shared decision-making fosters trust<br />
and improves the patient-provider working<br />
relationship. The importance of trust<br />
is underscored by research suggesting that<br />
when trust is present between a patient and<br />
practitioner, recommendations are followed<br />
90% of the time but only 50% of the time<br />
when trust levels are described as “low.” 34<br />
In addition, it has been found in other areas<br />
of healthcare that fewer medical malpractice<br />
claims 35 and greater job satisfaction 36<br />
are observed when care is provided from a<br />
family-centered perspective.<br />
Benefits for the Business from Family-<br />
Centered Care<br />
In light of the broad pattern of positive<br />
effects associated with the provision of<br />
family-centered care for patients, families,<br />
and clinicians, it stands to reason<br />
that family-centered care should also be<br />
associated with a higher rate of hearing<br />
aid uptake. Although this relationship<br />
was not directly tested, new evidence in<br />
a submitted paper by Singh and Launer 37<br />
finds support for this hypothesized relationship.<br />
They report on data collected on<br />
63,105 individuals with hearing loss who<br />
did not own hearing aids and who received<br />
a recommendation for at least one hearing<br />
aid. In contrast to the 50% of individuals<br />
who purchased a hearing aid when<br />
they attended the appointment alone (n =<br />
35,188), 64% of individuals purchased at<br />
least one hearing aid when they attended<br />
the appointment with a family member or<br />
significant other (n = 29,917).<br />
While it may be tempting to draw a causal<br />
connection between hearing aid uptake<br />
and the delivery of care that is inclusive<br />
Figure 1. The total number of <strong>publication</strong>s returned from PubMed for the term “Patient-Centered Care” in each of seven 5-year periods.<br />
of family, it is important to note that the<br />
study did not employ random assignment<br />
to condition. Nevertheless, this study is the<br />
first to provide quantitative evidence that<br />
attendance at audiology appointments with<br />
significant others—a key recommendation<br />
of family-centered care—is positively correlated<br />
with hearing aid uptake.<br />
Is Audiology Implementing Family-<br />
Centered Care?<br />
To date, there are no survey data describing<br />
the extent to which family-centered<br />
care is implemented in audiology clinics.<br />
We suspect that audiology is experiencing<br />
a transition away from a site-of-lesion<br />
perspective and towards family-centered<br />
care. Unfortunately, there is also reason to<br />
suspect that, on balance, hearing healthcare<br />
practitioners do not currently provide<br />
care from a family-centered care perspective<br />
with high fidelity. Several recent studies<br />
report that communication between<br />
patients and practitioners during initial<br />
appointments is largely controlled and<br />
structured by the clinician, 38 family members<br />
minimally participate in audiology<br />
appointments and are typically not invited<br />
to join the conversation, 15,16 and that shared<br />
decision-making rarely occurs when treatment<br />
plans are being developed. 39<br />
At this point you may be asking, if<br />
family-centered care represents a “win” for<br />
all involved, why is it not being practiced<br />
more regularly? Three points are worth<br />
mentioning. First, much of the research<br />
about family-centered care was only published<br />
in the 2000s (Figure 1), with only<br />
a small fraction coming from audiology.<br />
Thus, it is relatively recent that audiologists<br />
have recognized the importance of<br />
family-centered care for better healthcare<br />
outcomes.<br />
Second, and probably most importantly,<br />
it is inherently challenging to transform<br />
healthcare delivery, particularly when professional<br />
development time is limited and<br />
the availability of training materials is not<br />
widespread. To address this issue, audiology<br />
could benefit from learning and incorporating<br />
lessons on how best to implement<br />
behavior change in clinicians. 40<br />
Third, it may be possible that audiologists<br />
believe they already deliver family-centered<br />
care in the clinic. There is considerable evidence,<br />
much of it led by Nobel-prize winner<br />
Daniel Kahneman, that when observers are<br />
asked to reflect on their own abilities, they<br />
tend to become biased and self-serving. 41-43<br />
We suspect that such biases may also apply<br />
to well-intentioned clinicians and researchers<br />
(ourselves included) when asked to judge<br />
clinical efficacy. This inability to fully selfassess<br />
clinical competencies brings to mind<br />
the classic observation that most drivers (ie,<br />
93%) rate their driving skills as better than<br />
average. 44 Indeed, in an analysis of 326 studies<br />
investigating how well clinicians adhere<br />
to recommended guidelines, clinicians, on<br />
average, tend to overestimate their adherence<br />
rate by 27%. 45<br />
Looking Forward: Key<br />
Recommendations for Audiology<br />
Table 1 contains 10 suggestions for<br />
the implementation of family-centered<br />
audiologic care. It is well known, however,<br />
from research on knowledge translation<br />
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aPriL 2016 i hearingreview.com 19
ReseaRch // Family-Centered Hearing Care<br />
Family-centered care has become internationally recognized as<br />
a dimension of high-quality health provision. The broad consensus<br />
is that family-centered care results in superior health<br />
outcomes, particularly along dimensions such as patient wellbeing<br />
(less symptomology), adherence to treatment recommendations,<br />
and satisfaction with medical services.<br />
and optimal ways to implement behaviour<br />
change in clinical settings, that to<br />
try to do ‘’too much too soon” is a recipe<br />
for noncompliance and disappointment<br />
(for example, see article about Knowledge<br />
Translation at http://www.cihr-irsc.<br />
gc.ca/e/29418.html). 46 We therefore recommend<br />
starting with just 3 of the 10 suggestions,<br />
as follows:<br />
1) Invite a family member along to audiologic<br />
appointments, reinforcing the<br />
reasons why they should attend.<br />
2) Set up the physical environment so<br />
that family are comfortably included<br />
in the consultation rather than being<br />
relegated to a seat at the back of the<br />
room.<br />
3) Start the appointment by letting the<br />
patient and the family member know<br />
that input will be sought from both of<br />
them—patient first and then the family<br />
member.<br />
As can be seen from this Top 3 list,<br />
the implementation of family-centered care<br />
requires buy-in from all stakeholders including<br />
executives, managers, clinicians, support<br />
staff, and of course from patients and their<br />
significant others.<br />
In light of the changing landscape in<br />
audiology—most notably the increased<br />
commoditization of audiologic services, the<br />
entry into the market of “big box” retail,<br />
and potential regulatory changes such as<br />
those suggested by the President’s Council<br />
of Advisors on Science and Technology 47 —<br />
it will be incumbent upon audiologists to<br />
continue to develop and to increasingly<br />
demonstrate our value as clinicians. We<br />
propose that the provision of audiologic<br />
treatment shift from a site-of-lesion focus<br />
to a family-centered care perspective as a<br />
means to achieve this goal and increase the<br />
value of our services. ◗<br />
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38. Grenness C, Hickson L, Laplante-Lévesque A,<br />
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Meyer C, Davidson B. Communication patterns in<br />
audiologic rehabilitation history-taking: Audiologists,<br />
patients, and their companions. Ear Hear.<br />
2015;36:191-204.<br />
40. Fisher ES, Shortell SM, Savitz LA. Implementation<br />
science: A potential catalyst for delivery system<br />
reform. JAMA. 2016;315(4):339-340.<br />
41. Tversky A, Kahneman D. The framing of<br />
decisions and the psychology of choice. Science.<br />
1981;211(4481):453-458.<br />
42. Kahneman D, Tversky A. On the reality of cognitive<br />
illusions. Psycholog Rev. 1996;103(3):582–591.<br />
43. Vickrey BG, Samuels MA, Ropper AH. How<br />
neurologists think: A cognitive psychology<br />
perspective on missed diagnoses. Ann Neurol.<br />
2010;67(4):425-433.<br />
44. Svenson O. Are we all less risky and more skillful<br />
than our fellow drivers? Acta Psychologica.<br />
1981;47(2):143-148.<br />
45. Adams AS, Soumerai SB, Lomas J, Ross-Degnan D.<br />
Evidence of self-report bias in assessing adherence<br />
to guidelines. Int J Qual Health Care. 1999;11:187-<br />
92.<br />
46. Canadian Institutes of Health Research. Knowledge<br />
Translation (Feb 22, 2016). Available at: http://www.<br />
cihr-irsc.gc.ca/e/29418.html<br />
47. President’s Council of Advisors and Science and<br />
Technology. Report on hearing technologies (2015).<br />
Available at: https://www.whitehouse.gov/sites/<br />
default/files/microsites/ostp/PCAST/pcast_hearing_<br />
tech_letterreport_final3.pdf<br />
48. Dillon H, James A, Ginis J. Client Oriented Scale<br />
of Improvement (COSI) and its relationship to<br />
several other measures of benefit and satisfaction<br />
provided by hearing aids. J Am Acad Audiol.<br />
1997;8:27-43.<br />
49. Preminger JE, Lind C. Assisting communication<br />
partners in the setting of treatment goals: The<br />
development of the goal sharing for partners<br />
strategy. Sem Hear. 2012;33, 53-64.<br />
50. Laplante-Lévesque A, Hickson L, Worrall L. A<br />
qualitative study on shared decision making<br />
in rehabilitative audiology. J Acad Rehab Audiol.<br />
2010;43:27-43.<br />
51. Scarinci N, Worrall L, Hickson L. The ICF and thirdparty<br />
disability: Its application to spouses of older<br />
people with hearing impairment. Disability and<br />
Rehab. 2009;25(31):2088-2100.<br />
52. Preminger JE, Meeks S. The Hearing Impairment<br />
Impact-Significant Other Profile (HII-SOP): a tool<br />
to measure hearing loss-related quality of life in<br />
spouses of people with hearing loss. J Am Acad<br />
Audiol. 2012;23:807-823.<br />
CORRESPONDENCE can be<br />
addressed to Hearing Review or Dr<br />
Singh at: gurjit.Singh@phonak.com<br />
08
09
Family-Centered Care<br />
Working with Difficult<br />
Conversations
RESEARCH // FAMILY-CENTERED HEARING CARE<br />
Used with permission of The Hearing Review. All rights reserved. Original citation: English K,<br />
Jennings MB, Lind C, Montano J, Preminger J, Saunders G, Singh G, Thompson E. Family-centered audiology<br />
care: Working with difficult conversations. Hearing Review. 2016;23(8)[Aug]:14. Available at:<br />
http://www.hearingreview.com/2016/07/family-centered-audiology-care-working-difficult-conversations<br />
Family-centered Audiology Care: Working with<br />
Difficult Conversations<br />
Recommendations for moving toward a family-centered model in hearing healthcare<br />
By KRIS ENGLISH, PhD; MARY BETH JENNINGS, PhD; CHRISTOPHER LIND, PhD; JOSEPH MONTANO, EdD; JILL PREMINGER,<br />
PhD; GABRIELLE SAUNDERS, PhD; GURJIT SINGH, PhD; ELIZABETH THOMPSON, AuD<br />
A family-centric approach<br />
to hearing healthcare must<br />
acknowledge the fact that discord<br />
and disagreement about the<br />
severity and importance of the<br />
hearing loss can occur between<br />
the patient and his/her family<br />
members. When parties are<br />
in disagreement, difficult (but<br />
important!) conversations can<br />
arise. This article presents four<br />
strategies and examples for<br />
handling these conversations,<br />
while pointing to a need to<br />
acquire “difficult conversation<br />
competencies.”<br />
Editor’s note: As reported in The Hearing<br />
Review online news (November 6, 2015),<br />
<strong>Phonak</strong> has convened a select group of hearing<br />
healthcare experts to provide evidence-based<br />
recommendations to hearing care providers<br />
on how to better engage family members. The<br />
objective of this group is to facilitate family<br />
involvement throughout the hearing remediation<br />
process. The first installment, “Family<br />
Centered Adult Audiologic Care: A <strong>Phonak</strong><br />
Position Statement”, 1 appeared in the April<br />
2016 Hearing Review. This is the second paper<br />
from the group’s work.<br />
Difficult conversations are a part of<br />
everyday life, involving people we<br />
work with, live with, and care about. 2<br />
Audiology certainly has its share of difficult<br />
conversations, perhaps epitomized by<br />
the responsibility of informing parents of a<br />
child’s hearing loss. 3 Other examples of difficult<br />
conversations in audiology include:<br />
n Explaining to a teen patient that her<br />
hearing loss is indeed permanent;<br />
n Acknowledging the impact of stigma<br />
with a patient who dreads appearing<br />
old, infirm, or unattractive;<br />
n Calibrating high expectations with realistic<br />
outcomes.<br />
We may feel generally prepared for these<br />
kinds of conversations because they are part<br />
of our daily one-on-one patient encounters.<br />
However, when a family member is included,<br />
the complexity of the conversation inherently<br />
increases and may catch us off guard. Consider<br />
an example shared by a student who was<br />
assessing a patient with tinnitus, but had not<br />
expected the husband to express his own<br />
concerns: “The husband, while being caring<br />
and defensive for his wife, tried time and time<br />
again to get information....‘What is causing<br />
this? What is the likelihood of it getting better?<br />
Why are you passing us off to the physician?<br />
Why won’t you give us answers?’ I [the<br />
Kris English, PhD, is Professor/Interim School Director at the University of Akron/<br />
NOAC, Akron, Ohio; Mary Beth Jennings, PhD, is Associate Professor of the School<br />
of Communication Sciences and Disorders at the University of Western Ontario,<br />
Canada; Christoper Lind, PhD, is Senior Lecturer in Audiology in the Department of<br />
Speech Pathology and Audiology at Flinders University, Adelaide, Australia; Joseph<br />
Montano, EdD, is Associate Professor of Audiology and Director of Hearing and<br />
Speech at Weill Cornell Medical College, New York Presbyterian Hospital; Jill Preminger,<br />
PhD, is Division Chief of Communicative Disorders and Program Director for<br />
Audiology at the University of Louisville School of Medicine, Louisville, Ky; Gabrielle<br />
Saunders, PhD, is Associate Director of the VA RR&D National Center for Rehabilitative<br />
Auditory Research (NCRAR) and Associate Professor in the Department of Otolaryngology<br />
at Oregon Health and Science University, Portland, Ore; Gurjit Singh, PhD,<br />
is a senior research audiologist at <strong>Phonak</strong>, Warrenville, Ill; and Elizabeth Thompson,<br />
AuD, is Director Business Development, VA and Audiology, at <strong>Phonak</strong>.<br />
14 HEARINGREVIEW.COM I AUGUST 2016<br />
11
Figure 1. Let the patient and family member know that input will be sought from both of them: patient<br />
first, and then family member.<br />
Figure 2. As the conversation moves forward, the audiologist can attempt to reframe a difficult conversation<br />
item and help the patient and family member(s) build accord and find positive solutions.<br />
student] had not appropriately devoted time<br />
to helping the husband understand my role<br />
in the process. He heard my suggestions for<br />
technology and other options, but he had not<br />
heard me validate his or his wife’s personal<br />
journeys.” 4<br />
As a reflective-practitioner-in-training, 5<br />
the student realized that, of course, family<br />
members will have concerns, and they will<br />
want to be included in the appointment. This<br />
realization doesn’t necessarily help us feel<br />
comfortable with the prospect, because there<br />
are still so many unknowns: What if patient<br />
and family perspectives contradict? Can we<br />
help patient and family develop common<br />
ground? What if the family member takes<br />
the lead or even dominates the conversation?<br />
Will we lose control of the appointment?<br />
Wouldn’t it be better to avoid the situation<br />
altogether?<br />
These are the kind of questions that could<br />
lead audiologists to opt out of “family-centered”<br />
audiologic care, even in light of several<br />
known benefits. Singh et al 1 recently published<br />
a position paper regarding the benefits or<br />
why’s of family-centered care: to benefit the<br />
patient, the family, the clinician, the business,<br />
and the relevance and longevity of the profession.<br />
The position paper also offered 10 suggestions<br />
on how to implement family-centered<br />
audiologic care. The three they recommend<br />
starting with are:<br />
1) Invite a family member to appointments<br />
and reinforce the reasons why<br />
they should attend;<br />
2) Arrange the physical environment so<br />
that family are comfortably included<br />
rather than being relegated to a seat in<br />
the back of the room;<br />
3) Let the patient and family member know<br />
that input will be sought from both of<br />
them: patient first and then family member<br />
(Figure 1).<br />
This last suggestion will inform us<br />
whether the patient and family are on the<br />
same page regarding the patient’s hearing<br />
problems. If they both see the situation the<br />
same way—and both are open to our help—<br />
we can move forward. However, when the<br />
parties are not in agreement, we likely find<br />
ourselves in a difficult conversation. Let us<br />
consider a scenario wherein a patient (Mr<br />
Roberts) and his son are present for an<br />
appointment:<br />
Audiologist: It’s nice to meet you, Mr Roberts.<br />
And you are?<br />
Son: I’m his son, Joseph.<br />
Audiologist: Welcome to you both. Mr Roberts,<br />
I’d like to focus on you first, and then, Joseph, I’m<br />
hoping you will add your thoughts? [Joseph nods;<br />
audiologist turns back to Mr Roberts]. Mr Roberts,<br />
tell me about yourself… [He introduces himself and<br />
talks about his occupation, family, interests, etc]<br />
This is all helpful to know. And now, what brings<br />
you here today?<br />
Mr Roberts: [rolling his eyes] Joe did—he made<br />
this appointment and he also drove me here. He’s<br />
making a big fuss about nothing.<br />
Son: [Leans in, and the audiologist turns his way.]<br />
Audiologist: What’s your take on the situation,<br />
Joseph?<br />
Son: He keeps saying that, but it’s not true. He<br />
is really missing almost everything people say these<br />
days.<br />
Mr Roberts: And yet I’m understanding him<br />
perfectly right now. I’m an old man; it’s normal to<br />
stop listening to every silly word.<br />
We realize we have opened the proverbial<br />
“can of worms,” a concern shared by other<br />
healthcare professionals as well. 6 The patient<br />
is defensive and feels demeaned; the son is<br />
concerned and frustrated. We’ve learned their<br />
conversation has been going on for some time,<br />
and has not been productive.<br />
Our first instinct might be to withdraw<br />
from the uncomfortable situation, bypass the<br />
familial tension, and focus only on the patient. 7<br />
However, this approach would likely yield only<br />
short-term gains: we might maintain some<br />
efficiency in terms of testing time, but our test<br />
results and recommendations may not help<br />
the patient change his viewpoint. He has taken<br />
a position and, human nature being what it<br />
is, will hold on to it: “Once one has made a<br />
public pronouncement, matters of pride and<br />
consistency push one toward clinging to that<br />
position, no matter how discredited.” 8<br />
Rather than avoid this difficult conversation,<br />
we can take an extra step and try to help<br />
the patient reframe the situation, ideally from<br />
his son’s point of view. To do so, the conversational<br />
flow needs to change, so the audiologist<br />
seeks a way to help them talk to each other, not<br />
to her (Figure 2).<br />
12<br />
AUGUST 2016 I HEARINGREVIEW.COM 15
RESEARCH // FAMILY-CENTERED HEARING CARE<br />
Audiologist: You’ve talked about this before<br />
[they nod] and it’s become a sore spot? [They nod<br />
again.] Let’s change gears a bit: it would help me to<br />
learn a little bit about what is important to you as<br />
a family. What kind of things do you do together?<br />
Mr Roberts: Not much together these days. I’m<br />
retired now and Joe works. But I fill in as babysitter a<br />
lot; I’ve got three grandchildren, they keep me going.<br />
Son: They love hanging out with you. Yesterday<br />
I told them about how you and I used to fish together<br />
on weekends, and they said they’d like to try that.<br />
Mr Roberts: That would be great... [He makes<br />
eye contact with the audiologist but she waits for<br />
Joseph to finish his thought.]<br />
Son: But Dad, maybe you don’t realize why we<br />
stopped doing it. When we’d fish, we’d also talk for<br />
hours—well, whisper, of course. To me, that really<br />
was the best part. But the last time we fished, I had to<br />
raise my voice for you to hear me—practically shouting—and<br />
that kept the fish away. We didn’t catch a<br />
thing and we just stopped trying.<br />
Mr Roberts: [Facial expression changes, realization<br />
sets in. The audiologist waits again, resisting the<br />
impulse to take control of the conversation.]<br />
Son: This is what I’m getting at, Dad. It’s not<br />
about fishing. I like talking with you; I want you to<br />
hear me, hear the kids.<br />
Mr Roberts: [Nods.] Those were good times.<br />
Fair enough. I guess I can give it a try. [He and Joe<br />
turn to the audiologist.] Where do we start?<br />
Initially, the audiologist’s ability to help<br />
was blocked by family emotions (defensiveness,<br />
frustration). We cannot directly change<br />
those emotions, but we can provide opportunities<br />
to help both parties talk to each other<br />
about what hurts, what matters, and what they<br />
want. Try as we might, there is no avoiding this<br />
truism: feelings are at the very core of these difficult<br />
conversations. 2 It may seem efficient to<br />
leapfrog over emotions into problem-solving<br />
mode, but rushing the process is counterproductive<br />
since, ultimately, “unacknowledged<br />
feelings do not disappear. They fester.” 9<br />
What Helped This Difficult<br />
Conversation?<br />
The audiologist carefully employed four<br />
behaviors to advance this conversation:<br />
1) Acknowledging the emotions in the<br />
room. “You’ve talked about this before and<br />
it’s become a sore spot?” It is tempting to overlook<br />
the tension in an appointment and stay<br />
in our “comfort zone” (testing and explaining<br />
results). However, when we do so, we risk<br />
patient disengagement and the decision not<br />
to adhere to our recommendations. 10,11 Our<br />
opportunities to earn patient trust are few and<br />
time-constrained, but we can optimize the<br />
opportunities by honestly addressing patient<br />
and family emotions.<br />
2) Using open-ended queries. “What kind<br />
of things do you do together?” This question<br />
is an invitation to both parties to co-develop<br />
the family story. The initial responses may not<br />
include listening challenges, but soon the son<br />
will allude to the reason for the appointment:<br />
there are times when hearing problems have<br />
impacted the quality of their family lives.<br />
3) Providing the opportunity to reframe<br />
the situation in the family’s own words. The<br />
open-ended query allowed Joseph to explain<br />
how his father’s hearing loss has affected him<br />
and their relationship. Family members often<br />
focus on what frustrates them (the patient<br />
won’t answer the phone, turn down the TV,<br />
or admit there is a problem), resulting in<br />
accusations and resentment. Family members<br />
may not yet have articulated why they are<br />
frustrated: the quality of their family life is<br />
diminishing, and because the patient doesn’t<br />
seem to care, it feels like rejection.<br />
When reframed as a quality-of-family-life<br />
concern rather than a personal failure, the<br />
patient is more likely to see the situation within<br />
the family context and realize, “I had no idea<br />
that this is what you were experiencing.” This<br />
kind of revelation can provide motivation for<br />
moving forward.<br />
4) Waiting. When Mr Roberts makes eye<br />
contact, he is expecting the audiologist to take<br />
over the conversation, but she can tell Joseph<br />
still has more to say, and she waits for him.<br />
Reviewing the dialogue, we can appreciate<br />
how much would not have been said had she<br />
jumped into the conversation at that point.<br />
Waiting is probably a more professionally congruent<br />
concept for audiologists than “clinical<br />
silence” as employed by professional counselors,<br />
because it feels comfortable and courteous.<br />
Waiting is probably a more professionally<br />
congruent concept for<br />
audiologists than “clinical silence”<br />
as employed by professional<br />
counselors, because it feels more<br />
comfortable and courteous.<br />
We merely elect to slow down, observe the<br />
other speaker, and determine if he has more to<br />
add but needs time to gather his thoughts, or<br />
is somewhat overwhelmed and needs time to<br />
compose himself. At a later point, the audiologist<br />
waits again; from his facial expression, she<br />
gathers that Mr Roberts needs a moment to<br />
process what his son is saying.<br />
Our experience tells us not all family<br />
conversations are as straightforward as<br />
this example. The first challenge we have<br />
addressed here is engaging both patient<br />
and family member in a conversation that<br />
quickly gets to the “heart of it all.” But additional<br />
complications can surface as well, for<br />
instance the misconceptions that both parties<br />
may have about hearing loss.<br />
Son: He says he can’t hear on the phone and so<br />
he never takes messages for me. Sometimes when<br />
we are home he just doesn’t answer me. Then I hear<br />
him having a great old chat and laugh with his mate<br />
over the phone.<br />
Mr Roberts: Some voices are easier to follow<br />
than others. Bob has a voice that I can hear over the<br />
phone. I have known him for 35 years.<br />
Son: You can hear when you want to. You just<br />
ignore me. [Mr Roberts throws himself against the<br />
back of his chair, crosses his arms, and glares at the<br />
wall clock, appearing angry and hurt.]<br />
Audiologist: [Acknowledging Joseph:] That’s<br />
what it feels like to you…[Facing Mr Roberts:]<br />
Would you say that’s the whole story? [He shakes<br />
his head.]<br />
[Speaking to both:] So there’s more to it, but we<br />
don’t know what that is yet, exactly. Let’s find out.<br />
Our starting point is to evaluate Mr. Roberts’<br />
hearing. Next, as a team, we want to understand<br />
just how complicated hearing and hearing loss is.<br />
It can look like “selective listening,” which upsets<br />
those feeling ignored. [Joseph nods emphatically.]<br />
But that’s just the tip of the iceberg. [Mr Roberts<br />
slowly nods, realizing he doesn’t know what else the<br />
“iceberg” entails.] Several situations add even more<br />
stress to hearing abilities—even soft music in the<br />
background, or a change in our overall health.<br />
[Addressing Mr. Roberts:] You can teach us<br />
about this. Your thoughts?<br />
Mr Roberts: It would be great to find out what<br />
is actually going on.<br />
Son: [Nods with relief.] Whatever it takes, Dad.<br />
As before, the audiologist first took a<br />
moment to recognize each person’s emotional<br />
reactions. By giving credence to both experiences,<br />
as well as providing a brief preview of<br />
16 HEARINGREVIEW.COM I AUGUST 2016<br />
13
As a first step in understanding family-centered care, we could contemplate a basic principle already<br />
consistently applied in pediatric audiology: that in family-centered care, the family is the patient.<br />
future “family education” sessions, she helped<br />
the family move beyond its stressful impasse.<br />
A New Framework for Audiology: The<br />
Family is the Patient<br />
Obviously, not all families are healthy and<br />
supportive, and not all patients are interested<br />
in restoring family relations. We know from<br />
experience that some families will not agree<br />
on much, including the impact of hearing<br />
loss or the need for hearing help. Sometimes<br />
family members disengage from the process<br />
altogether. Obviously, audiologists are not<br />
family counselors. 12 However, it’s the rare<br />
patient who has no “family” in his or her life<br />
(in the broadest definition, to include friends<br />
and communication partners, per Singh et<br />
al 1 ), and we cannot deny the impact supportive<br />
families can have on patient success. 13 As<br />
complicated as families might be, we would be<br />
remiss to exclude them from patient care. As<br />
a first step in understanding family-centered<br />
care, we could contemplate a basic principle<br />
already consistently applied in pediatric audiology<br />
14 : that in family-centered care, the family<br />
is the patient. 15,16<br />
When the family is our patient, our outcome<br />
questions change accordingly: Is the<br />
family happy, satisfied, generally adjusting<br />
well? To date, we do not have a valid way in<br />
audiology to answer these questions.<br />
Where Do We Go From Here?<br />
Not surprisingly, managing difficult<br />
conversations requires advanced skills. For<br />
instance, Browning et al 17 describe a set of<br />
“difficult conversation competencies” which<br />
includes:<br />
n Comfort with our own imperfection and<br />
vulnerability;<br />
n Expecting—not avoiding—uncertainty,<br />
ambiguity, and complexity.<br />
Readers will likely agree that these personal<br />
characteristics are not typically discussed<br />
in audiology. The lack of attention to<br />
“who we are” and the issues of control and<br />
power in these encounters probably explains<br />
a comment the first author recently heard at<br />
a conference: “…As long as they (patients/<br />
families) think they are getting their way…”<br />
The encouraging news is, becoming comfortable<br />
and effective with difficult conversations<br />
is a teachable and learnable skill. 18-20 There<br />
is much more to learn as well, and future<br />
articles will contribute to our understanding<br />
of family-centered care in audiology. ◗<br />
Acknowledgements<br />
This article is part of the ongoing collaboration<br />
of the <strong>Phonak</strong> Family-Centered Care<br />
Expert Circle, which includes the authors and<br />
Ora Buerkli-Halevy, Vice President Global<br />
Audiology, <strong>Phonak</strong> AG; Bill Dickinson,<br />
AuD, Vice President Audiology, <strong>Phonak</strong>;<br />
Louise Hickson, PhD, panel chairperson and<br />
Professor of Audiology and Head of the School<br />
of Health and Rehabilitation Sciences at The<br />
University of Queensland, Brisbane, Australia;<br />
Nerina Scarinci, PhD, Senior Lecturer, Speech<br />
Pathology and Audiology, The University of<br />
Queensland, Queensland, Australia; Stefan<br />
Launer, PhD, VP of Science and Technology,<br />
<strong>Phonak</strong> AG and Adjunct Professor at The<br />
University of Queensland, Queensland,<br />
Australia; Ulrike Lemke, PhD, Senior<br />
Researcher, <strong>Phonak</strong> AG; Sigrid Scherpiet, PhD,<br />
Research Psychologist, <strong>Phonak</strong> AG; Gurjit<br />
Singh, PhD, Senior Research Audiologist,<br />
<strong>Phonak</strong> AG; Barbra Timmer, MACAud,<br />
MAudSA, MBA, Research Audiologist and<br />
PhD Candidate, University of Queensland,<br />
Brisbane, Australia.<br />
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Family-Centered Adult Audiologic Care: A <strong>Phonak</strong><br />
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11. Ekberg K, Grenness C, Hickson L. Addressing<br />
patients’ social concerns regarding hearing aids within<br />
audiology appointments for older adults. Am J Audiol.<br />
2015;23:337-350.<br />
12. Clark J, English K. Counseling-infused Audiologic<br />
Care. Boston: Allyn & Bacon;2014.<br />
13. Institute of Medicine. Crossing the Quality Chasm:<br />
A New Health System for the 21st Century.<br />
Washington, DC: National Academy Press;2001.<br />
14. Harrison M. Facilitating communication in infants and<br />
toddlers with hearing loss. In: Seewald R, Tharpe<br />
AM, eds. Comprehensive Handbook of Pediatric<br />
Audiology. San Diego: Plural Publishing;2016: 829-<br />
847.<br />
15. Allmond B. The Family is the Patient: Using Family<br />
Interviews in Children’s Medical Care. Baltimore:<br />
Williams and Wilkins;1999.<br />
16. Meyer E et al. Difficult conversations: Improving<br />
communication skills and relational abilities in health<br />
care. Pediatric Critical Care Med. 2009;10(3):352-359.<br />
17. Browning DM, Meyer EC, Troug RD, Solomon MZ.<br />
Difficult conversations in health care: Cultivating<br />
relational learning to address the hidden curriculum.<br />
Medical Education. 2007;82:95-113.<br />
18. Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-<br />
Edwards K. Approaching difficult communication<br />
tasks in oncology. Cancer Journal for Clinicians.<br />
2005;55:164-177.<br />
19. Epner D, Baile W. Difficult conversations: Teaching<br />
medical oncology trainees communication skills one<br />
hour at a time. Academic Medicine. 2014;89(4).<br />
20. Meyers L. Counseling today: All in the family.<br />
September 2014. Available: http://ct.counseling.<br />
org/2014/09/all-in-the-family<br />
CORRESPONDENCE to Dr English<br />
at: ke3@uakron.edu. To learn more<br />
about the Family-centered audiology<br />
care initiative, email Ora Buerkli-<br />
Halevy at: ora.buerkli@phonak.com<br />
14<br />
AUGUST 2016 I HEARINGREVIEW.COM 17
15
Family-Centered Care<br />
Making Decisions and<br />
Setting Goals Together
RESEARCH // FAMILY-CENTERED HEARING CARE<br />
Family-centered Audiology Care: Making<br />
Decisions and Setting Goals Together<br />
Useful tools for getting the patient and their family members to address the hearing loss<br />
By LOUISE HICKSON, PhD; CHRISTOPHER LIND, PhD; JILL PREMINGER, PhD;<br />
BRITTANY BROSE, AuD; REBECCA HAUFF, and JOSEPH MONTANO, PhD<br />
Used with permission of The Hearing Review (www.hearingreview.com). All rights reserved.<br />
Original citation: Hickson L, LInd C, Preminger J, Brose B, Hauff R, Montano J. Family-centered<br />
audiology care: Making decisions and setting goals together. Hearing Review. 2016;23(11):14-19.<br />
Family-centered Care (FCC)<br />
accepts that both the person with<br />
hearing loss and those around<br />
them should be the focus of<br />
audiologic rehabilitation. Strategies<br />
outlined here revolve around<br />
including family in discussions<br />
about taking action to resolve<br />
hearing difficulties and setting<br />
goals for successful hearing<br />
rehabilitation.<br />
As reported in the November 6, 2015 The<br />
Hearing Review online news, <strong>Phonak</strong> has convened<br />
a select group of hearing healthcare<br />
experts (see Acknowledgements section at the<br />
end of this article) to provide evidence-based<br />
recommendations to hearing care providers<br />
on how to better engage family members.<br />
Chaired by Dr Louise Hickson, the objective<br />
of this group is to facilitate family involvement<br />
throughout the hearing remediation process.<br />
Family members have a key role to<br />
play in decisions made by adults with<br />
hearing loss. They provide an important<br />
perspective on the personal, interpersonal,<br />
social, and communicative contexts for our<br />
patients. As a consequence, they have the<br />
potential to influence all aspects of hearing<br />
help-seeking and rehabilitation, and we<br />
argue, therefore, that their input is extremely<br />
important and cannot be ignored by hearing<br />
care professionals (HCPs). In this article, we<br />
focus on a number of key decisions that<br />
adult patients make, and suggest ways that<br />
HCPs can involve family. First, we take as the<br />
premises for this article that:<br />
Louise Hickson, PhD, is Professor of<br />
Audiology, head of the School of Health<br />
and Rehabilitative Services, and director of<br />
the Communication Disability Centre at<br />
the University of Queensland in Australia;<br />
Christopher Lind, PhD, is Senior Lecturer<br />
in Audiology in the Department of Speech<br />
Pathology and Audiology at Flinders University,<br />
Adelaide, Australia; Jill Preminger,<br />
PhD, is Division Chief of Communicative<br />
Disorders and Program Director for Audiology<br />
at the University of Louisville School of<br />
Medicine; Brittany Brose, AuD, is a clinical<br />
audiologist with University of Louisville<br />
Physicians and a clinical preceptor for the University of Louisville Program in Audiology; Rebecca<br />
Hauff is a 4th-year student at the University of Louisville and an extern at St. Louis University<br />
School of Medicine; and Joseph Montano, PhD, is Associate Professor of Audiology and Director<br />
of Hearing and Speech at Weill Cornell Medical College, New York Presbyterian Hospital.<br />
n Hearing loss has its primary impact<br />
on everyday communication and<br />
individuals’ perceptions and experiences<br />
of communication difficulty typically<br />
lead them to the clinic.<br />
n Difficulties in everyday communication<br />
impact on both the individual with<br />
hearing loss and conversation partners,<br />
and everyone in the conversation shares<br />
in the responsibility for establishing and<br />
maintaining successful communication.<br />
n Those close to the person with hearing<br />
loss, most commonly family members,<br />
frequently find themselves in the role of<br />
resolving communication difficulties as<br />
they arise.<br />
n Family-centered care (FCC) is responsive<br />
to the impact of hearing loss on those<br />
around our adult patients and provides<br />
a model of care that emphasizes the role<br />
of significant others in addressing these<br />
everyday conversation difficulties.<br />
Frequently, patients first begin to realize<br />
they have hearing loss through interactions<br />
with family and friends. The signs may be<br />
subtle, with requests for repetitions, difficulty<br />
hearing in noisy environments, or just the<br />
feeling that they are working harder to<br />
understand communication. This period of<br />
hearing loss awareness represents the first<br />
steps in the patient’s hearing journey. 1,2<br />
The patient’s journey towards seeking<br />
assistance from the HCP may begin with a<br />
suspicion that communication is not as easy<br />
or successful as it once was, and progresses<br />
to a clear recognition that communication<br />
difficulties are constantly arising as a result of<br />
the hearing loss. While this is a journey that<br />
most patients take with individuals who are<br />
part of their lives, it is common for patients<br />
to attend the hearing clinic alone. Thus, the<br />
key decisions that adult patients need to<br />
make are: 1) Should I do anything about<br />
my hearing and communication? and 2)<br />
What action will I take to address my hearing<br />
14 HEARINGREVIEW.COM I NOVEMBER 2016<br />
17
and communication difficulties? These two<br />
questions are often made without the support<br />
of people often affected by the hearing loss.<br />
1) Should I do anything about my<br />
hearing and communication?<br />
Every patient’s hearing journey is personal<br />
and deeply embedded in the context of his<br />
or her everyday personal and social life. Each<br />
individual must realize the presence of hearing<br />
loss at their own pace. The length of time it<br />
takes to become aware of these issues varies<br />
considerably and is affected by both internal<br />
and external factors. 3-5 Internal factors may<br />
include the variables that influence a person’s<br />
self-perception of hearing loss, such as stigma,<br />
and their ability to cope with communication<br />
difficulties. 6 External factors refer to the<br />
environmental, social, and personal influences<br />
on communication abilities. Given that each<br />
patient’s journey is a personal exploration with<br />
his/her own story, having an understanding of<br />
the motivating factors that brought him/her<br />
to the HCP is valuable when building an FCC<br />
approach to the management of hearing loss.<br />
We refer to obtaining this information from<br />
our patient as the “Patient Story” and it is a<br />
key component of FCC.<br />
Yet, traditionally, HCPs take a medical/<br />
audiologic history either using a written<br />
intake form or asking closed set questions,<br />
such as “Do you have any ringing in your<br />
ears?” or “Have you ever worn a hearing aid?”<br />
This method of intake interview is limited as<br />
it neither explores the psychosocial, emotional<br />
components of hearing loss, nor does it take<br />
into account environmental influences on<br />
the patient’s communication. Eliciting the<br />
patient story using opened-ended queries,<br />
such as “Tell me about your hearing loss?”<br />
or “How does your hearing loss affect your<br />
daily life?” allows for a better understanding<br />
of the patient experience with hearing loss<br />
and opens the door to patients directing the<br />
conversation, rather than simply responding<br />
to the questions asked. Open-ended questions<br />
encourage disclosure and promote empathy<br />
and a greater understanding between patient<br />
and HCP than is offered via the traditional<br />
intake case history.<br />
Perhaps though, the most important<br />
benefit of the open-ended question is the<br />
ability to invite the participation of family<br />
members into the dialogue allowing them to<br />
be part the assessment and treatment process.<br />
The patient story—augmented by the family<br />
My Hearing Options<br />
What is it? Hearing aids Communication education Assistive listening<br />
devices<br />
What is<br />
involved for<br />
you?<br />
What is<br />
involved for<br />
your family?<br />
Options I want<br />
to know more<br />
about<br />
n Being fitted with<br />
hearing aids<br />
n Wearing the hearing<br />
aids in my everyday<br />
life to help with my<br />
hearing problems<br />
n Attending when the<br />
hearing aids are<br />
fitted<br />
n Helping you to wear<br />
the hearing aids<br />
member’s input—can provide the HCP with<br />
relevant information about the individual<br />
and family’s journey toward understanding<br />
hearing loss. It will help to understand<br />
whether or not they are ready to do anything<br />
about hearing and communication.<br />
2) What action will I take to address my<br />
hearing and communication difficulties?<br />
Once patients have decided to do something<br />
about their hearing and communication<br />
difficulties, the next major decision they<br />
have to make is what they will do to address<br />
those difficulties. Commonly, options include<br />
amplification devices of various kinds, assistive<br />
listening devices, communication education<br />
and/or auditory training.<br />
Laplante-Lévesque, Hickson and<br />
Worrall 7 interviewed older adults about their<br />
experiences with such decisions, and they<br />
n Participating in group<br />
sessions to learn strategies<br />
to manage my<br />
hearing problems<br />
n Using the strategies<br />
to help in my everyday<br />
life<br />
n Participating in the<br />
group sessions to learn<br />
strategies to help you<br />
n Using the strategies to<br />
help in everyday life<br />
n Buying some<br />
devices to help<br />
me hear in certain<br />
situations<br />
n Wearing the<br />
devices in everyday<br />
life<br />
n Learning about<br />
the devices<br />
n Helping you wear<br />
the devices<br />
No treatment<br />
n Keep on going<br />
the way I am<br />
at the moment<br />
c c c c<br />
Options I will<br />
think about<br />
c c c c<br />
Figure 1a. Example of the first page in a Decision Aid for adults with hearing loss and their families (based on Laplante-Lévesque et al 7 ).<br />
Each option has its own page, with the option of hearing aids shown below in Figure 1b.<br />
Hearing aids<br />
What is involved?<br />
What is expected from you<br />
and your family?<br />
What are the positives?<br />
What are the negatives?<br />
Figure 1b. Example page from a Decision Aid on the option of hearing aids.<br />
n Being fitted with hearing aids<br />
n Wearing the hearing aids in my everyday life to help with my hearing problems<br />
n Attending 3 or 4 appointments at a hearing clinic<br />
n Returning to the clinic if you have problems with the hearing aids<br />
n You will be able to hear soft sounds better<br />
n You will hear better in one-to-one conversations, in small groups and when<br />
listening to TV or radio<br />
n Hearing aids will not sound natural in noise or in large groups.<br />
n You will need to persevere to get used to hearing aids<br />
n Most hearing aids can be seen by others<br />
identified family members as playing a vital<br />
role in decision making. This applied whether<br />
or not the family member was present when<br />
the HCP explained the options to the patient.<br />
Likewise, Poost-Foroosh et al 8 identified<br />
family member involvement in appointments<br />
as a facilitator of hearing aid adoption by<br />
adults, and Hickson et al 9 found that older<br />
adults with more positive support from their<br />
significant others were more likely to be<br />
successful hearing aid users than those with<br />
less positive support.<br />
However, the question remains: How<br />
can HCPs involve family members in this<br />
important decision making process? We<br />
present three clinical tools that may assist the<br />
HCP in this process.<br />
1) The Decision Aid<br />
One tool that has been evaluated in<br />
18<br />
NOVEMBER 2016 I HEARINGREVIEW.COM 15
RESEARCH // FAMILY-CENTERED HEARING CARE<br />
GPS: Developing Shared Goals<br />
Step<br />
1<br />
Easy Communication<br />
__________________________________________________________________<br />
__________________________________________________________________<br />
__________________________________________________________________<br />
Step<br />
2<br />
PHL: Problems I Experience<br />
_____________________________<br />
_____________________________<br />
CP: Problems I Experience<br />
_____________________________<br />
_____________________________<br />
PHL: Problems My CP Experiences<br />
_____________________________<br />
_____________________________<br />
CP: Problems My CP Experiences<br />
_____________________________<br />
_____________________________<br />
Step<br />
3<br />
What Problems Do You Both Experience?<br />
__________________________________________________________________<br />
__________________________________________________________________<br />
__________________________________________________________________<br />
Steps<br />
4<br />
&<br />
5<br />
Order of<br />
importance<br />
c<br />
c<br />
c<br />
Shared Goals & Strategies to Achieve Goals<br />
___________________________________________________<br />
___________________________________________________<br />
___________________________________________________<br />
Notes: CP = Communication Partner; PHL = Person with Hearing Loss<br />
Figure 2. Stages of Change model and HCP actions at different stages, as described by<br />
Prochaska and DiClemente. 11 Illustration adapted from Jorgensen et al 16 and used with<br />
permission from the Ida Institute, Nærum, Denmark (http://idainstitute.com).<br />
Figure 3. The Goal-sharing for Partners Strategy worksheet (from Preminger and Lind 12 ).<br />
research and is now being used clinically is<br />
the Decision Aid (Figure 1a). A Decision Aid<br />
is a simple written document that presents<br />
brief facts about each option in a process: what<br />
it is, what is involved in it, and what are the<br />
advantages and disadvantages. Examples of<br />
Decision Aids (also called Option Grids) for<br />
hearing can be found in Laplante-Lévesque,<br />
Hickson and Worrall 10 and at http://<br />
optiongrid.org.<br />
The first page shows all the possible<br />
options and patients are asked to indicate<br />
by ticking the boxes which ones they would<br />
like to know more about. From there, the<br />
HCP tells the patient more about those<br />
options that interest them. In the final part<br />
of the process, the patient indicates on the<br />
first page which options they will now think<br />
more about based on the information they<br />
have received.<br />
A Decision Aid is a supplement to verbal<br />
discussion with the patient and the family<br />
members. If family members are not<br />
able to attend the appointment, then the<br />
patient can take the Decision Aid home<br />
and discuss it with family members before<br />
making a decision. We encourage HCPs to<br />
develop a Decision Aid, such as the example<br />
in Figures 1a-b to include in their clinical<br />
practice. These figures represent an extension<br />
of published research in this area and<br />
includes an important addition: responses<br />
to the questions “What is involved for your<br />
family?” and “What is expected of you and<br />
your family?”<br />
2) The Transtheoretical Model of<br />
Change<br />
Another possible way to help the patient<br />
and family through the hearing journey is to<br />
consider the application of the Transtheoretical<br />
Model of Change. 11 This model not only<br />
highlights the stages of attitude change and<br />
later behavior change that patients may go<br />
through in their hearing journey, but it makes<br />
reference to the types of support that the<br />
HCP might provide to support the journey.<br />
If applied in an FCC approach to clinical<br />
interaction, this model allows for both patient<br />
and family member to be supported by the<br />
HCP with respect to their attitudes and beliefs<br />
towards intervention.<br />
Figure 2 outlines the stages patients (and<br />
by extension, their family members) typically<br />
go through and importantly the different types<br />
of responses HCPs may provide at each stage.<br />
For example, the HCP might recognize times<br />
when education and informational counseling<br />
might be the more appropriate responses to<br />
a patient’s expressed attitudes and needs, by<br />
contrast with encouragement and support for<br />
the actions the patient may have taken.<br />
3) The Goal-sharing for Partners<br />
Strategy (GPS)<br />
As patients and their families discuss what<br />
they hope to achieve by taking action, they<br />
will likely consider situations where they have<br />
communication success and communication<br />
failures. The HCP can use this discussion<br />
to assist the patient and family members in<br />
formalizing their goals and strategies. The<br />
Goal-sharing for Partners Strategy (GPS) is<br />
a tool that may be used in order to guide this<br />
process (Figure 3). 12 The GPS is a goal setting<br />
tool, much like the COSI, 13 in which an individual<br />
with hearing loss and a family member<br />
are asked together to consider:<br />
1) Situations which result in successful<br />
communication;<br />
2) Problems that each experience in<br />
specific situations due to the hearing<br />
loss;<br />
16 HEARINGREVIEW.COM I NOVEMBER 2016<br />
19
3) Problems they experience together in<br />
specific situations due to the hearing<br />
loss;<br />
4) Specific goals that they would like to<br />
achieve, and<br />
5) The steps they can take to achieve these<br />
goals.<br />
During informal discussions with HCP<br />
colleagues, several voiced concerns about the<br />
implementation of the GPS. It was believed<br />
that the GPS would take too long to complete<br />
or that it was unnecessary because “I already<br />
take an extensive case history.”<br />
To address these concerns, authors BB,<br />
RH, and JP are evaluating the GPS in a<br />
busy audiology/ENT practice, with it being<br />
administered after the case history and<br />
before a diagnostic or hearing aid evaluation.<br />
Preliminary results suggest that, unlike the<br />
COSI, the GPS is not an outcome measure.<br />
Rather, it is a tool to start a conversation<br />
and to learn the patient’s story using an FCC<br />
approach. After using the GPS with three<br />
adult patients each attending with a family<br />
member, author BB has noted that the GPS<br />
is a helpful tool because “it pulls the family<br />
member into the conversation in a way that<br />
other questionnaires or counseling methods<br />
do not,” and it is helpful to get the perspective<br />
of a family member especially when meeting<br />
a patient for the first time. Another HCP<br />
reported that, when using the GPS, it<br />
“separated me as a HCP who is concerned<br />
about my patient’s total communication, not<br />
just the amplification device”—a particularly<br />
timely attribute as many hearing care<br />
practices face increased competition from<br />
larger dispensing chains and/or Big Box retail,<br />
and are also unbundling hearing aid costs<br />
from professional fees.<br />
When asked if it was useful to have the<br />
GPS conversation that included both the<br />
patient and a family member, one patient<br />
reported “Until somebody pointed it out,<br />
we just didn’t think about it.” The adult<br />
daughter of a patient noted that prior to the<br />
interview she was unaware of some of the<br />
problems her father was experiencing and<br />
that the GPS experience was useful to clarify<br />
their options.<br />
Earlier, the key decisions that adult<br />
patients need to make were noted. Use of<br />
the GPS appears to help patients and family<br />
members realize that these decisions are truly<br />
family decisions rather than those made alone<br />
by the patient with hearing loss. Thus the key<br />
decisions may be revised to:<br />
1) Should we do anything about the<br />
hearing loss and our communication?<br />
2) What action will we take to address the<br />
hearing loss and our communication<br />
difficulties?<br />
Summary<br />
Family-centered Care (FCC) accepts that<br />
both the person with hearing loss and those<br />
around them should be the focus of audiologic<br />
rehabilitation. This paper is the third in<br />
a series 14,15 that is aimed at helping HCPs to<br />
operationalize FCC, to involve families in a<br />
meaningful way, and to optimize opportunities<br />
to improve the quality of life of people<br />
with hearing loss and their families. Strategies<br />
outlined here revolve around including family<br />
in discussions about taking action to resolve<br />
hearing difficulties and setting goals for successful<br />
hearing rehabilitation.<br />
Acknowledgements<br />
This article is part of the ongoing collaboration<br />
of the <strong>Phonak</strong> Family-centered Care<br />
Expert Circle, which includes this paper’s<br />
authors and Ora Buerkli-Halevy, MS, VP of<br />
Global Audiology at <strong>Phonak</strong> AG; Gurjit Singh,<br />
PhD, senior research audiologist at <strong>Phonak</strong><br />
AG, Adjunct Professor at Ryerson University,<br />
and Adjunct Lecturer at the University of<br />
Toronto; Kris English, PhD, Professor and<br />
interim school director at the University<br />
of Akron/NOAC; Sigrid Scherpiet, PhD, a<br />
research psychologist and Ulrike Lemke, PhD,<br />
a senior researcher at <strong>Phonak</strong> AG, in Stafa,<br />
Switzerland; Barbra Timmer, MAudA, MBA,<br />
formerly director of Audiology at <strong>Phonak</strong><br />
AG and currently PhD candidate at the<br />
University of Queensland; Nerina Scarinci,<br />
PhD, senior lecturer in Speech Pathology and<br />
Audiology at the University of Queensland;<br />
Gabrielle Saunders, PhD, associate director<br />
of the VA RR&D National Center for<br />
Rehabilitative Auditory Research (NCRAR),<br />
and associate professor in the Department<br />
of Otolaryngology at Oregon Health and<br />
Science University; Mary Beth Jennings,<br />
PhD, Associate Professor in the School of<br />
Communication Sciences and Disorders and<br />
the National Centre for Audiology at the<br />
University of Western Ontario; and Stefan<br />
Launer, PhD, VP of Science and Technology<br />
at <strong>Phonak</strong> AG. ◗<br />
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Family-Centered Adult Audiologic Care: A <strong>Phonak</strong><br />
Position Statement. Hearing Review. 2016;23(4):16.<br />
15. English K, Jennings, MB, Lind, C, Montano, J,<br />
Preminger, J, Saunders, G, Singh, G, Thompson,<br />
E. Family-centered audiology care: Working<br />
with difficult conversations. Hearing Review.<br />
2016;23(8):14.<br />
16. Jorgensen SV, Hansen HV, Hessov IB, Lauritsen JB,<br />
Madelung S, Tonnesen H. Operation–Complications<br />
are preventable. Copenhagen: International Health<br />
Promoting Hospitals & Health Services, Bispebjerg<br />
Hospital;2003.<br />
CORRESPONDENCE can be<br />
addressed to HR or Dr Hickson at:<br />
l.hickson@uq.edu.au<br />
MORE ARTICLES in this series can<br />
be found on the HR website at<br />
goo.gl/AeGks6 and goo.gl/9xZQal<br />
20<br />
NOVEMBER 2016 I HEARINGREVIEW.COM 17
21
Family-Centered Care<br />
How Do I Implement FCC<br />
in My Practice?
RESEARCH // FAMILY-CENTERED HEARING CARE<br />
Used with permission from The Hearing Review (www.hearingreview.com). All rights reserved.<br />
Original citation: Turnbull B. How do I implement family-centered care in my Practice? Hearing<br />
Review. 2016;23(12):22-24.<br />
How Do I Implement Family-centered Care in<br />
My Practice?<br />
Tips for overcoming obstacles to family-centered care in a busy practice<br />
By BETTINA TURNBULL, MAud<br />
For some time, we have heard<br />
about Person-centered Care<br />
and its extension – Familycentered<br />
Care. Many hearing<br />
care professionals have attended<br />
lectures and workshops and<br />
love the idea, but have questions<br />
about implementation. Is it going<br />
to take longer? How do I get a<br />
family member to attend the initial<br />
consultation? How do I get my<br />
support staff involved? Will it cost<br />
our practice more? These are<br />
some of the valid questions that<br />
this article addresses.<br />
Bettina Turnbull,<br />
MAud, is Director of<br />
Audiology & Education,<br />
Asia Pacific for<br />
the Sonova Group,<br />
with her home base<br />
in Sydney, Australia.<br />
As reported in the November 6, 2015<br />
Hearing Review online news, <strong>Phonak</strong> has convened<br />
a select group of hearing healthcare<br />
experts to provide evidence-based recommendations<br />
to hearing care providers on how to<br />
better engage family members. Chaired by Dr<br />
Louise Hickson, the objective of this group<br />
is to facilitate family involvement throughout<br />
the hearing remediation process. This paper is<br />
part of a series of papers about family-centered<br />
care that have been supported by the <strong>Phonak</strong><br />
Expert Circle. It will address some misconceptions<br />
and answer questions asked by many who<br />
are interested in changing to a family-centered<br />
counseling model and suggest some ideas for<br />
implementing change in your practice.<br />
How do I get other hearing care professionals<br />
(HCPs) in my practice to<br />
embrace family-centered care (FCC)?<br />
Any change can cause a variety of reactions—<br />
ranging from enthusiasm to deep cynicism—<br />
and there are likely to be some set-backs along<br />
the way. Figure 1 shows common stages when<br />
a change occurs. Implementing FCC into your<br />
practice not only requires a change in attitude<br />
(most clinicians tend to have quite a positive<br />
attitude to FCC) but a change in behavior, and<br />
that can be a challenge. We are by nature creatures<br />
of habit and it can be quite demanding,<br />
even for an enthusiastic advocate, to change<br />
what they do. 1<br />
A plan for implementing FCC might look<br />
like this:<br />
1. If your business is big enough to<br />
have managers, get them on board.<br />
If management does not support the<br />
change to FCC, it is unlikely to succeed.<br />
Developing a clear reason for the why is<br />
crucial. The <strong>Phonak</strong> position statement<br />
on FCC by Singh, Hickson, English et<br />
al 2 is a good tool to assist in getting the<br />
conversation started.<br />
2. Find out who your early adopters are.<br />
Early adopters tend to be excited by<br />
new things, and are likely to try out new<br />
things first. Be sure to brief them well<br />
and practice with them. Ensure your<br />
early adopters have all the support they<br />
need to succeed so that their enthusiasm<br />
continues and rubs off on those who are<br />
more reluctant.<br />
3. Communication is key. Develop a communication<br />
plan for your practice about<br />
FCC. Communicate often and keep it<br />
simple.<br />
4. Provide training (including for support<br />
staff) and allow time for practice.<br />
This allows HCPs to ask questions and<br />
discuss options. The dreaded role-play<br />
is gold.<br />
5. Identify and accept barriers to successful<br />
implantation and collaborate<br />
to find the best solutions. For example,<br />
room size or set up could be a barrier to<br />
successful FCC. More potential barriers<br />
are discussed below.<br />
6. Provide support and share success<br />
stories. Support ways in which HCPs<br />
can share their successes. This could<br />
be informally in the lunch room or via<br />
a pin board, email, newsletter, etc. The<br />
options are endless.<br />
Does a FCC Approach Make the<br />
Appointment Longer?<br />
This is a common question and is a little<br />
like asking, How long is a piece of string?<br />
It depends on how long you take. It is not<br />
about spending more time, but spending your<br />
time more effectively. By using a motivational<br />
counseling approach, the conversation will<br />
yield deeper understanding of your client’s and<br />
the family’s communication needs, more effective<br />
trust building, and a fantastic platform for<br />
an ongoing partnership throughout the hearing<br />
journey.<br />
Traditionally, HCPs are taught that the client<br />
medical history is the chief instrument for<br />
building rapport with the client. Good familycentered<br />
counseling yields a much richer foun-<br />
22 HEARINGREVIEW.COM I DECEMBER 2016<br />
23
dation for rapport building than the essentially<br />
closed question format that most medical history<br />
forms could ever achieve.<br />
Therefore, transforming the medical history<br />
form into client-friendly language which<br />
can be mailed/emailed or handed out for<br />
completion prior to the appointment is an<br />
option that will save time during the appointment<br />
itself (be sure to ask the client to come 10<br />
minutes earlier if you want them to complete<br />
a medical history in the waiting room). In<br />
this case, instead of the 10 minutes spent on<br />
the medical history in the appointment, only<br />
the red flags must be addressed. The face-toface<br />
time with the client can be better used to<br />
build rapport and to really get to know their<br />
communication needs and the needs of their<br />
family.<br />
Many clinicians also spend a lot of time<br />
on the explanation of the audiogram. We<br />
found that most clients are actually not that<br />
interested in the details; instead, they just want<br />
a confirmation of the hearing loss and then to<br />
understand what they can do about it. A brief<br />
outline of the results (ie, 1-2 minutes) with<br />
the option for more detail (there is always the<br />
sound engineer or science-minded individual<br />
who wants a detailed account) allows the client<br />
and their companion to direct the conversation<br />
to where their interests lie, and generally<br />
save you time for this part. Think about the last<br />
time you had a blood test result or went to the<br />
optometrist. Did they give you detailed results,<br />
or did they give you a quick <strong>overview</strong> and ask<br />
you to pick a frame?<br />
How Do I Get a Family Member to<br />
Attend?<br />
This seems deceptively simple, as many clients<br />
bring along someone without being asked.<br />
In this case, of course, the only thing you need<br />
to do is invite the family member into the consultation<br />
room and most importantly, actually<br />
involve them in the conversation. 3,4<br />
Having support staff onboard is absolutely<br />
critical in having more of your clients attend<br />
with a family member (or any other regular<br />
communication partner). Some of your staff<br />
members may feel uncomfortable when asking<br />
a prospective client to bring a family member<br />
to the initial appointment.<br />
You may need to involve your support staff<br />
in discussions to tease out some of the barriers<br />
and how to overcome obstacles. The first step<br />
is for the staff members to understand why<br />
it is beneficial for the client to have someone<br />
Figure 1. Diagram showing The Process of Change. Credit: Michael Erickson’s blog, A Principal’s Reflections (http://10minutehr.com/wpcontent/uploads/2013/09/Virginia-Satir-change_process-by-Michael-Erickson.gif).<br />
along. Another barrier often reported is that<br />
some staff feel uncomfortable asking because<br />
the client may be widowed—quite a common<br />
situation for the demographic we serve. By<br />
working through these issues, sharing ideas<br />
about how to ask, and what to say, support<br />
staff can gain confidence in requesting that a<br />
family member attend.<br />
Do I Need to Change Anything in<br />
the Appointment to Better Include a<br />
Family Member?<br />
It takes practice to include another person<br />
in what has traditionally been a two-person<br />
(professional and patient) appointment. Some<br />
clinicians do this quite naturally, while others<br />
think that having a family member in the<br />
room on a chair near the door is enough.<br />
Critically assess your consultation room, and<br />
think about how to best place furniture to<br />
encourage a three-way discussion. Using two<br />
screens on swivel stands can also assist in<br />
ensuring that all parties can easily see what is<br />
on the being displayed.<br />
Practice drawing family members into the<br />
conversation at opportune moments. Asking<br />
questions like “How do you feel when this<br />
happens?” or “What is it like for you in this<br />
situation?” can open entirely new perspectives.<br />
It also initiates an understanding of the<br />
complications that hearing difficulties pose<br />
for both the patient and their communication<br />
partners. See the recent article in this series<br />
by Kris English and colleagues 5 on “Working<br />
with difficult situations” which goes into more<br />
detail about how to involve family members in<br />
these important conversations.<br />
Does FCC Lead to Extra Costs?<br />
Think about the last time you spent over<br />
$1,000 without consulting somebody. It<br />
stands to reason that the decision to opt for<br />
amplification and the type of amplification<br />
chosen is more easily made when co-decision<br />
makers are present and have received all the<br />
relevant information on which to base their<br />
decision. It can be overwhelming and difficult<br />
for clients to relay the complicated nature of<br />
the information to partners at home. And,<br />
when there is a hefty price tag attached, often<br />
the easiest option is to do nothing and wait<br />
“until it gets worse.” Family members who<br />
are part of the journey from the beginning are<br />
likely to have better awareness of the issues<br />
and be more supportive in a shared decisionmaking<br />
process. 2<br />
Retrospective data analysis 6 of over 60,000<br />
appointments showed that there was a significant<br />
increase in the rate of fitting, more binaural<br />
fittings, and a higher level of hearing aid<br />
purchased where a family member was present<br />
at the initial appointment as compared<br />
to when the client arrived alone. This data<br />
included both fully client-funded and fully<br />
subsidized fitting options. The bottom line<br />
is that any costs of implementing a familycentered<br />
care model have been shown to be<br />
offset or exceeded due to higher fitting rates.<br />
DECEMBER 2016 I HEARINGREVIEW.COM 23<br />
24
RESEARCH // FAMILY-CENTERED HEARING CARE<br />
Conclusion<br />
Implementing change is never easy, however,<br />
with planning, good communication<br />
and an open mind to overcoming challenges<br />
along the way, the outcomes for clients, their<br />
families, and the rewards for the HCP, are well<br />
worth the effort.<br />
Acknowledgements<br />
This article is part of the ongoing collaboration<br />
of the <strong>Phonak</strong> Family-centered<br />
Care Expert Circle, which includes this paper’s<br />
author and Ora Buerkli-Halevy, MS, VP of<br />
Global Audiology at <strong>Phonak</strong> AG; Gurjit Singh,<br />
PhD, senior research audiologist at <strong>Phonak</strong> AG,<br />
Adjunct Professor at Ryerson University, and<br />
Adjunct Lecturer at the University of Toronto;<br />
Kris English, PhD, Professor and interim<br />
school director at the University of Akron/<br />
NOAC; Ulrike Lemke, PhD, senior researcher<br />
at <strong>Phonak</strong> AG, in Stafa, Switzerland; Barbra<br />
Timmer, MAudA, MBA, formerly director of<br />
Audiology at <strong>Phonak</strong> AG and currently PhD<br />
candidate at the University of Queensland;<br />
Nerina Scarinci, PhD, senior lecturer in Speech<br />
Pathology and Audiology at the University of<br />
Queensland; Gabrielle Saunders, PhD, associate<br />
director of the VA RR&D National Center for<br />
Rehabilitative Auditory Research (NCRAR),<br />
and associate professor in the Department of<br />
Otolaryngology at Oregon Health and Science<br />
University; Mary Beth Jennings, PhD, Associate<br />
Professor in the School of Communication<br />
Sciences and Disorders and the National<br />
Centre for Audiology at the University of<br />
Western Ontario; and Stefan Launer, PhD, VP<br />
of Science and Technology at <strong>Phonak</strong> AG. ◗<br />
References<br />
1. Laplante-Lévesque A. Applying the Stages of Change<br />
to Audiologic Rehabilitation. Hearing Journal. 2015; 68<br />
(6):8-12.<br />
2. Singh G, Hickson L, English K, Scherpiet S, Lemke U,<br />
Timmer B, Buerkli-Halevy O, Montano J, Preminger<br />
J, Scarinci N, Saunders G, Jennings MB, Launer S.<br />
Family-Centered Adult Audiologic Care: A <strong>Phonak</strong><br />
Position Statement. Hearing Review. 2016;23(4):16-21.<br />
3. Ekberg K, Myer C, Scarinci N, Grenness C, Hickson<br />
L. Family member involvement in audiology<br />
appointments with older people with hearing<br />
impairment. Int J Audiol. 2014;54 (2):1-7.<br />
4. Ekberg K, Grenness C, Hickson L. Addressing patients’<br />
social concerns regarding hearing aids within audiology<br />
appointments for older adults. Am J Audiol. 2014; 23:<br />
337-350.<br />
5. English K, Jennings MB, Lind C, Montano J, Preminger<br />
J, Saunders G, Singh G, Thompson E. Family-centered<br />
Audiology Care: Working with Difficult Conversations.<br />
Hearing Review. 2016; 23(8):14-17.<br />
6. Singh G, Launer S. Social Context and Hearing Aid<br />
Adoption. Trends in Hearing. 2016;(20):1-10<br />
CORRESPONDENCE can be<br />
addressed to HR or Bettina<br />
Turnbull at:<br />
Bettina.turnbull@sonova.com<br />
OTHER ARTICLES in this series:<br />
• Family-centered Adult Audiologic<br />
Care: A <strong>Phonak</strong> Position<br />
Statement (Apr 2016 HR)<br />
• Family-centered Audiology<br />
Care: Working with Difficult<br />
Conversations (Aug 2016 HR).<br />
• Family-centered Audiology Care:<br />
Making Decisions and Setting<br />
Goals Together (Nov 2016 HR);<br />
24 HEARINGREVIEW.COM I DECEMBER 2016<br />
25
Family-Centered Care<br />
Working with Partners<br />
Reporting „ Incongruent“<br />
Hearing Aid Outcome
RESEARCH // FAMILY-CENTERED CARE<br />
Used with permission of The Hearing Review (www.hearingreview.com). All rights reserved. Citation for<br />
this article: Saunders G, Preminger J, Scarinci N. Family-centered care: Working with partners reporting<br />
“incongruent” hearing aid outcome. Hearing Review. 2017;24(2):26-30.<br />
Family-centered Care: Working with Partners<br />
Reporting “Incongruent” Hearing Aid Outcome<br />
What to do when the patient’s and family member’s perceptions of the hearing loss differ<br />
By GABRIELLE SAUNDERS, PhD, JILL PREMINGER, PhD, and NERINA SCARINCI, PhD<br />
Discussing the opinions of<br />
a person with hearing loss<br />
whose perceptions about their<br />
hearing differs significantly<br />
from their family’s perceptions<br />
can be awkward. However,<br />
these situations can be used<br />
to positively share experiences<br />
and change perspectives when<br />
addressed in a supportive<br />
environment. Here’s how.<br />
Gabrielle Saunders,<br />
PhD, is Associate<br />
Director of the<br />
VA RR&D National<br />
Center for Rehabilitative<br />
Auditory<br />
Research (NCRAR)<br />
and Associate Professor in the Department<br />
of Otolaryngology at Oregon Health<br />
and Science University in Portland; Jill<br />
Preminger, PhD, is Division Chief of Communicative<br />
Disorders and Program Director<br />
for Audiology at the University of Louisville<br />
School of Medicine in Kentucky; and<br />
Nernina Scarinci, PhD, is a Senior Lecturer<br />
in Speech Pathology and Audiology at the<br />
University of Queensland in Australia.<br />
You were feeling good—you have<br />
incorporated family centered<br />
care into your practice by following<br />
the first three steps in the <strong>Phonak</strong><br />
Position Statement: Family-centered Adult<br />
Audiologic Care. 1 That is, you have:<br />
n Routinely been inviting a family member<br />
along to your patients’ audiologic<br />
appointments, and explaining to your<br />
patients why this is advantageous;<br />
n Rearranged your office so that family<br />
members and the patient can now be<br />
equally included in the consultation,<br />
and<br />
n Begun each appointment by letting the<br />
patient and their family member know<br />
that input will be sought from both of<br />
them—the patient first and then the<br />
family member.<br />
You are also a believer in evidence-based<br />
practice, and so you’ve begun using a hearing<br />
aid outcome measure that can be completed<br />
by both the patient and their family member.<br />
You routinely use the International Outcome<br />
Inventory for hearing aids (IOI-HA) and the<br />
significant other companion version (IOI-<br />
HA SO), 2 but know that there other are<br />
options you could choose, such as the Hearing<br />
Handicap Inventory (HHI) 3,4 paired with the<br />
HHI for significant others (HHI-SO), 5 the<br />
Self-Assessment of Communication (SAC)<br />
paired with the Significant Other Assessment<br />
of Communication (SOAC), 6 the Quantified<br />
Denver Scale (QDS) paired with the<br />
Quantified Denver Scale–Modified (QDS-m)<br />
for significant others, 6 or the Communication<br />
Profile for the Hearing Impaired (CPHI) 7<br />
paired with the CHPH proxy. 8 These pairs of<br />
questionnaires assess the hearing-impaired<br />
person’s perception of their own difficulties<br />
or outcome (self-report), and the spouse’s/<br />
family member’s perception of the difficulties<br />
or outcome of their spouse/family member<br />
with hearing impairment (proxy report).<br />
Authors’ Note: Although the pairs of questionnaires<br />
in this article are not specifically<br />
designed to assess third-party disability<br />
(ie, the impact of the hearing loss on<br />
the spouse/family member’s day-to-day<br />
functioning), some of the proxy versions<br />
do include a small number of items which<br />
do. The impact of the hearing loss on<br />
family members is without doubt a critical<br />
consideration in family-centered care<br />
because of the importance of acknowledging<br />
both the person with the hearing loss<br />
and their family as recipients of care, and<br />
thus the entire family may be considered<br />
when measuring outcomes. 9 However, a<br />
discussion of third-party disability is not<br />
the focal point of this article, but for the<br />
interested reader here are some references<br />
in which third-party disability is discussed<br />
in depth: Kamil & Lin 10 ; Scarinci et al 11 ;<br />
Scarinci et al 12 ; Preminger et al 13 ; Stephens<br />
et al. 14 Similarly, here are some questionnaires<br />
that can be used to assess third-party<br />
disability: Hearing Impairment Impact-<br />
Significant Other Profile (HII-SOP) 15 ;<br />
Significant Other Scale for Hearing<br />
Disability (SOS-HEAR). 16<br />
However, at your last appointment you<br />
encountered something uncomfortable, and<br />
were unsure how to address it: the patient’s<br />
responses on the IOI-HA were very different<br />
to those given on the IOI-HA-SO<br />
by the accompanying family member. You<br />
concluded that, evidently, these two people<br />
disagreed about the outcomes of the hearing<br />
aids. How awkward.<br />
So, what should your approach be? What<br />
might be the best way to handle these “incongruent”<br />
responses?<br />
First and foremost, just because a patient<br />
and a family member have different opinions,<br />
it does not indicate a problem and it shouldn’t<br />
make you uncomfortable. Think of it as providing<br />
the perfect opportunity for discussion;<br />
26 HEARINGREVIEW.COM I FEBRUARY 2017<br />
27
it is a chance to increase a shared understanding<br />
of communication and can hopefully prevent<br />
conflict and frustration down the line.<br />
Let’s get a little more specific here and<br />
consider a couple of hypothetical scenarios:<br />
Scenario 1. Jane & Peter<br />
Jane is a 56-year-old executive at a large<br />
company. She recently obtained hearing aids<br />
for her moderate hearing loss. Her husband,<br />
Peter, also age 56, has normal hearing and<br />
joined her at her hearing aid follow-up appointment.<br />
They completed the IOI-HA/IOI-HA-<br />
SO. Their scores are shown in Figure 1.<br />
With the exception of Q1, Jane’s scores<br />
are higher than Peter’s, suggesting that she<br />
has a higher opinion of the hearing aids than<br />
does Peter. In this situation, the dispensing<br />
professional might ask Jane and Peter why<br />
they gave the responses they did and then<br />
discuss the replies. Here are some hypothetical<br />
answers given by Jane and Peter.<br />
Explanation of scoring from Jane: “I’ve<br />
been using the hearing aids pretty much all the<br />
time both at work and at home, so I gave Q1 a<br />
rating of 5 (>8hr/day). I feel as though a weight<br />
has been lifted from my shoulders, my quality<br />
of life is so much better, so I gave Q7 a rating<br />
of 5 (very much better) too. I would say I am<br />
much more outgoing at work these days—I am<br />
enjoying that I can take part in meetings without<br />
worrying I will say something silly. When<br />
I get home, I am not nearly as tired as I used<br />
to be, and aside from when Peter tries to talk<br />
to me while I am watching TV, I can hear him<br />
very well, so I answered 5 to Q2 (helped very<br />
much) and 4 (slight difficulty) to Q3 because,<br />
although the hearing aids really help me, I still<br />
don’t hear perfectly. I am also more relaxed<br />
now. I think Peter must see the change in me,<br />
so I gave Q6 a score of 4 (Bothered slightly).<br />
In fact, I have so much energy these days that<br />
I suggested we have some friends over to dinner<br />
next weekend. That is something I have<br />
really missed but I haven’t done because it<br />
would have been too stressful, so I answered<br />
5 (affected not at all) to Q5. All in all, I am<br />
thrilled to have these hearing aids so Q4 gets a<br />
5 (very much worth it) too.”<br />
Explanation of scoring from Peter: “Well,<br />
the hearing aids certainly help Jane, and she<br />
wears them all the time—at least when I<br />
am around, so I gave a 5 (>8hr/day) to Q1.<br />
I answered a 3 (helped moderately) for Q2<br />
because things are definitely better, but they<br />
are far from perfect. For example, as Jane said<br />
Figure 1. IOI-HA and IOI-HA-SO data for Jane (blue bars) and Peter (red bars).<br />
just now, she still doesn’t hear me when she is<br />
watching TV—and forget it if I try to talk to<br />
her from the kitchen while I am cooking. It’s<br />
true that she hears me when we are sitting at<br />
the dinner table, and she hears her cell phone<br />
ring more often these days. This is why I<br />
answered 2 on Q3 (quite a lot of difficulty), Q4<br />
(slightly worth it), and 5 (affected quite a lot).<br />
I also answered 1 on Q6 (bothered very much)<br />
and 2 on Q7 (no change) since for me, this is<br />
all really quite disappointing and frustrating.”<br />
These discrepancies in perceptions demonstrate<br />
the usefulness of proxy reports. Much<br />
like an “empathy belly” (Figure 2) promotes<br />
empathy for the pregnancy experience, completing<br />
a questionnaire can alert a partner<br />
about the day-to-day experience of living with<br />
hearing loss. Peter’s answer to Q7 indicates<br />
that, despite Jane experiencing improvements<br />
in her quality of life as a result of the hearing<br />
aids, the hearing aids have not improved<br />
Peter’s enjoyment of life; his answer to Q6 also<br />
indicates that he is still bothered quite a lot by<br />
Jane’s hearing difficulties.<br />
This would be a good time to explore<br />
further with Peter what ongoing difficulties<br />
he is continuing to experience as a result of<br />
Jane’s hearing loss (ie, further explore his<br />
third-party disability). By asking Peter to<br />
share this, Jane will be able to consider the<br />
ongoing impact of her hearing difficulties on<br />
Peter’s everyday life, and you, as the clinician,<br />
could facilitate a discussion on strategies the<br />
couple might implement together to reduce<br />
his third-party disability.<br />
The incongruence on the IOI-HA on Q2<br />
and Q3 also indicates that Peter may not<br />
be aware of the “invisible” benefits Jane is<br />
experiencing from the hearing aids (feeling<br />
more energetic, less tired, and less stressed).<br />
This would be a good time to encourage<br />
Jane to share this with Peter so he can better<br />
understand that her perspective goes beyond<br />
simply hearing better.<br />
A tool to further this discussion is the<br />
Hearing Handicap Inventory (HHI), 3,4 a<br />
measure of the social and emotional consequences<br />
of hearing loss, and the proxy version,<br />
the HHI-SP. 5 Whereas the HHI asks the<br />
person with hearing loss “Does your hearing<br />
problem cause you to feel embarrassed when<br />
meeting new people?” the HHI-SP asks “Does<br />
your hearing problem cause your significant<br />
other to feel embarrassed when meeting new<br />
people?” In a number of studies, the HHI<br />
and the HHI-SP have been administered to<br />
Figure 2. Screen capture from Amazon.com of an Empathy Belly<br />
Pregnancy Simulator (from Birthways) which is designed to help<br />
partners understand the experience of pregnancy.<br />
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Figure 3. IOI-HA and IOI-HA-SO data for Robert (blue bars) and John (red bars).<br />
spouse couples in which one member has a<br />
hearing loss. In an evaluation of 52 couples<br />
in which one member was a hearing aid or<br />
cochlear implant user and the other member<br />
had normal or near-normal hearing, three<br />
different patterns emerged:<br />
1) There are couples in which the partner<br />
without hearing loss underestimates<br />
the hearing disability faced by<br />
the spouse with hearing loss (50% of<br />
couples);<br />
2) There are couples in which the partner<br />
without hearing loss overestimates the<br />
hearing disability (12%), and<br />
3) There are couples in congruence who<br />
report similar amounts of hearing disability.<br />
17<br />
In other words, in most couples in which<br />
one member is a hearing aid user and there<br />
is incongruence, the spouse often does not<br />
recognize that participation restrictions and<br />
activity limitations remain after one partner<br />
begins wearing a hearing aid. This demonstrates<br />
the usefulness of inquiring about the<br />
experience of each member of the couple,<br />
as in this case the perceptions that Jane and<br />
Peter share are in the minority.<br />
Getting back to Jane and Peter, in the<br />
post-IOI-HA-SO discussion, it is apparent<br />
that Peter is underestimating Jane’s hearing<br />
aid benefit. Once this is pointed out to Peter,<br />
it is likely that his perspective regarding the<br />
benefits of the hearing aid to Jane will change.<br />
Peter also brings up his frustration and disappointment<br />
with the hearing aids. This is not<br />
a proxy report. Rather, Peter is reporting his<br />
own third-party disability; in other words, the<br />
impact Jane’s hearing loss has on him. 11<br />
Furthermore, the discussion with Jane and<br />
Peter suggests they are not using effective communication<br />
skills much of the time—such as<br />
when trying to communicate from different<br />
rooms in the house and while one or both of<br />
them are distracted by the TV. This is an ideal<br />
opportunity for you, the hearing care professional,<br />
to discuss the impacts that hearing loss<br />
has on all family members, not just the person<br />
with hearing loss. It is also a time to provide<br />
communication strategies advice and training.<br />
Often, starting this discussion on what is<br />
working well (ie, pointing out that their communication<br />
at the dinner table is successful as<br />
the listening situation is good) can be a good<br />
place to start, as it helps to keep the discussion<br />
positive, and then offers the opportunity<br />
to further explore situations where there are<br />
communication difficulties.<br />
Finally, Peter notes that “I assume she too<br />
must know that she still can’t hear perfectly”<br />
suggests that he thinks perfect hearing is a<br />
possibility. In other words, his expectations<br />
about the hearing aids may be higher than<br />
is realistic. Here is an opportunity to discuss<br />
the matter.<br />
Scenario 2. Robert & John<br />
Robert is 68. He has had his hearing<br />
aids for just over 3 weeks. His son John has<br />
accompanied him to his hearing aid follow-up<br />
visit. Their IOI-HA and IOI-HA-SO<br />
scores are in Figure 3 below.<br />
Robert’s scores are in blue, John’s are in<br />
red. On all items, Robert’s scores are lower<br />
than John’s, suggesting he rates his hearingaid<br />
outcome less positively than John. Here<br />
are their “stories”:<br />
Explanation of scoring from Robert: “I<br />
am not enjoying these hearing aids; I find they<br />
don’t work very well, and so I only wear them<br />
when I have to, like when I am with John or<br />
his brother, and when I am out playing backgammon<br />
with my mates. Other than that, I<br />
don’t use them because they don’t help much,<br />
and really I can’t take the continuous noise I<br />
hear when I am wearing them. This is why I<br />
answered 1 or 2 for nearly all the questions—<br />
except for Q6. I answered 4 for that because<br />
my hearing isn’t very bad anyway.”<br />
Explanation of scoring from John: “I know<br />
Dad doesn’t like the hearing aids and he says<br />
they don’t work, but I don’t agree. When he<br />
does wear them he hears a lot better—he hears<br />
my questions and what my kids, his grandchildren,<br />
share with him. This is why I answered 4<br />
or 5 to most of the questions. Of course, I only<br />
gave a 2 (
Robert gradually increases his hearing-aid use<br />
time. It is important for both of them to understand<br />
that hearing aid success is often a process<br />
that happens over time.<br />
It is important for hearing care professionals<br />
and their patients to understand that hearing<br />
loss can cause disability in the person with<br />
hearing loss and third-party disability in their<br />
family members. Similarly, successful hearing<br />
aid use can reduce this disability in all family<br />
members. Hearing aid success most often<br />
occurs when all members of the family understand<br />
the benefits and limitations of hearing<br />
aid use, and the simple steps that can be taken<br />
to promote good communication.<br />
As we have hopefully illustrated above,<br />
discussing incongruent opinions of a person<br />
with hearing loss and his/her family can<br />
be used to positively share experiences and<br />
change perspectives when addressed in a supportive<br />
environment. ◗<br />
Acknowledgements<br />
This article is part of the ongoing collaboration<br />
of the <strong>Phonak</strong> Family-centered<br />
Care Expert Circle, which includes this paper’s<br />
authors and Ora Buerkli-Halevy, MS, VP of<br />
Global Audiology at <strong>Phonak</strong> AG; Gurjit Singh,<br />
PhD, Senior Research Audiologist at <strong>Phonak</strong><br />
AG, Adjunct Professor at Ryerson University,<br />
and Adjunct Lecturer at the University of<br />
Toronto; Kris English, PhD, Professor and<br />
interim school director at the University of<br />
Akron/NOAC; Bill Dickinson, AuD, Vice<br />
President Audiology, <strong>Phonak</strong>; Louise Hickson,<br />
PhD, panel chairperson and Professor of<br />
Audiology and Head of the School of Health<br />
and Rehabilitation Sciences at The University<br />
of Queensland, Brisbane, Australia; Ulrike<br />
Lemke, PhD, Senior Researcher at <strong>Phonak</strong><br />
AG, in Stafa, Switzerland; Barbra Timmer,<br />
MAudA, MBA, formerly director of Audiology<br />
at <strong>Phonak</strong> AG and currently PhD candidate<br />
at the University of Queensland; Bettina<br />
Turnbull, MAud, Director of Audiology &<br />
Education, Asia Pacific for the Sonova Group;<br />
Mary Beth Jennings, PhD, Associate Professor<br />
in the School of Communication Sciences<br />
and Disorders and the National Centre for<br />
Audiology at the University of Western<br />
Ontario; and Stefan Launer, PhD, VP of<br />
Science and Technology at <strong>Phonak</strong> AG.<br />
REFERENCES can be found in the<br />
online version of this article at:<br />
www.hearingreview.com<br />
CORRESPONDENCE can be<br />
addressed to HR or Dr Saunders<br />
at: Gabrielle.Saunders@va.gov<br />
OTHER ARTICLES in this series:<br />
• Family-centered Adult Audiologic<br />
Care: A <strong>Phonak</strong> Position<br />
Statement (Apr 2016 HR)<br />
• Family-centered Audiology<br />
Care: Working with Difficult<br />
Conversations (Aug 2016 HR).<br />
• Family-centered Audiology Care:<br />
Making Decisions and Setting<br />
Goals Together (Nov 2016 HR);<br />
• How Do I Implement Familycentered<br />
Care in My Practice?<br />
(Dec 2016 HR)<br />
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