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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 />

References<br />

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Jensen LD, Laplante-Lévesque A. Perceptions<br />

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Frankel RM. Physician-patient communication:<br />

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20 hearingreview.com i aPriL 2016<br />

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37. Singh G, Launer S. Social context and the decision<br />

to pursue hearing aids. Paper submitted.<br />

38. Grenness C, Hickson L, Laplante-Lévesque A,<br />

Meyer C, Davidson B. The nature of communication<br />

throughout diagnosis and management planning in<br />

initial audiologic rehabilitation consultations. J Am<br />

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39. Grenness C, Hickson L, Laplante-Lévesque A,<br />

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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Timmer B, Buerkli-Halevy O, Montano J, Preminger<br />

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Family-Centered Adult Audiologic Care: A <strong>Phonak</strong><br />

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admission encounters. Patient Education and<br />

Counseling. 2012;89:44-50.<br />

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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by hearing aids. J Am Acad Audiol. 1997;8(1):27-43.<br />

14. 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.<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 />

28<br />

FEBRUARY 2017 I HEARINGREVIEW.COM 27


RESEARCH // FAMILY-CENTERED CARE<br />

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 />

30<br />

FEBRUARY 2017 I HEARINGREVIEW.COM 29


31

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