Communication and Healthcare: Self-reports of people with hearing loss in primary care settings

Abstract

Objectives:

To assess the experiences of people with hearing loss in healthcare environments to characterize miscommunication and unmet needs, and guide recommendations for improving outcomes and access.

Methods:

Anonymous survey developed by subject-matter experts was posted on a large national hearing-loss consumer and advocacy organization website and email listserv. Data were collected and managed via RedCAP.

Results:

1,581responses were received. Respondents reported moderate or significant difficulty communicating with all listed providers. Three communication situations emerged as often presenting communication difficulties: hearing their name called in the waiting room, when the speaker’s back was turned, and when communicating by telephone. Despite 93% of respondents indicating they sometimes or often let providers know about their hearing loss, 29.3% of all respondents still reported that no arrangements were made to improve communication.

Conclusions:

This study clearly demonstrates the ongoing difficulties faced by individuals with hearing loss, particularly older adults, as they attempt to navigate both providers and situations associated with a typical primary care office visit.

Clinical Implications:

Inexpensive and efficient changes to improve communication include (1) Improving one-on-one provider communication by facing the individual with good lighting, clear speaking, and not obstructing one’s mouth; (2) Environmental changes such as using visual or tactile alerting devices in waiting rooms and adding noise-dampening carpeting and curtains; and (3) Avoiding telephones and conveying health information in writing.

Introduction

Hearing loss is one of the most prevalent sensory deficits, affecting an estimated 360 million people worldwide.¹ One in three people over the age of 65 have hearing loss that negatively impacts their everyday life; furthermore, severity of hearing loss increases with age.² Given the increasing number of older adults, the prevalence of hearing loss is expected to increase over the coming years. Individuals with hearing loss are subject to an increased communication burden and decreased quality of life compared with their peers who have normal hearing, as hearing loss interferes with communication abilities.^3,4

People with hearing loss visit physicians significantly more often than their normal hearing peers, yet still may be underutilizing available services.⁵ They also report decreased satisfaction with, as well as inadequate, health care services.^6,7 Hearing loss is also associated with higher rates of hospitalization and disease burden, regardless of age.⁸ Furthermore, middle-aged to older adults with hearing loss have higher healthcare costs compared to patients with normal hearing.⁹ Thus, older adults can be expected to have hearing loss and a higher disease burden, which may lead to more frequent and more complex interactions with healthcare providers. As hearing loss prevalence increases, primary care providers (PCPs) should expect to see more people with hearing loss in their practices.¹⁰

The known communication difficulties associated with hearing loss have important implications for effective communication between healthcare providers and persons with hearing loss. The healthcare setting is not particularly conducive to effective communication, even for persons with normal hearing. Background noise, such as from announcements, staff interactions, and waiting room conversation, is common in the primary care setting. Further, in noisy environments, privacy can be compromised if receptionists or providers raise their voices when speaking with individuals with hearing loss, especially in small reception areas.

Prior studies reporting increased difficulties with healthcare access and communication barriers among those with hearing loss were limited by small sample size¹¹ and lack of information about participants’ use of assistive listening devices (such as hearing aids or cochlear implants).¹² Furthermore, three-fourths of published studies on patient-physician communication do not take hearing loss into account.¹³ This emphasizes a need for more research on, and communication about, the impact of hearing loss in healthcare settings.

The current survey-based research study focused on the experiences of individuals with hearing loss in the primary care environment. Difficulties experienced with specific aspects of healthcare access and communication with a variety of providers and environments were elicited. The goal was to guide recommendations for improving outcomes and access for people with hearing loss in healthcare settings.

Methods

Study data were collected and managed using REDCap (Research Electronic Data Capture), a secure, web-based application, hosted at Duke University.¹⁴ Approval was obtained through the Duke Health Institutional Review Board. Links to the survey were posted online by the Hearing Loss Association of America (HLAA) and information about accessing the survey was sent to the HLAA email listserv, which reaches more than 51,000 individuals. Responses were gathered over a four-month period. 1,682 unique individuals accessed the survey link. All responses were anonymous.

Survey components

Subject-matter experts in hearing health (including an otologist and gerontology nurse practitioner) developed survey questions. Consensus of expert opinion included a comprehensive list of opportunities for patient interaction within the health care environment, specifically environments and personnel individuals with hearing loss would interact with during a typical primary care visit. Socio-demographic data collected included age group, sex, race, and ethnicity. Age group cut points were selected to allow separation of Medicare-eligible respondents (age 65 and older). Participants were asked if they currently used hearing aids (HAs) and/or cochlear implants (CIs).

Individuals were asked to rate their difficulty in hearing or communicating with the following personnel: physician, nurse practitioner (NP), physician assistant (PA), medical assistant/nurse, receptionist, pharmacist, other clinic personnel, parking attendant, or other personnel not listed here. They rated their difficulty on a 3-point scale including little, moderate, or significant (or not applicable, N/A). They were also asked to report how often they have communication difficulty in several healthcare-related situations rated on a 3-point scale: often, sometimes, or never (See appendix).

Descriptive and statistical analyses were completed using JMP Pro 13, a statistical discovery software package that is a division of SAS. For analysis of categorical variables, responses were evaluated using the Pearson chi-square and logistic regression. Dichotomous variables were created called ‘little’ or ‘moderate-significant’ difficulty communicating with each provider and ‘never’ or ‘sometimes-often’ having difficulty in each situation. Associations between provider or situation and categorical variables of age group, sex, ethnicity, and amplification device (hearing aid or cochlear implant) use were assessed via Pearson chi square (significance level p<0.05) and odds ratios (95% confidence interval). Associations for reported racial categories were not assessed due to the limited respondents in non-white categories.

Results

Responses were received from 1,581 individuals. Not all questions were answered by all participants.

Nearly 63% of the sample was 65 years of age or older (31% fell within the 65–74 age group which was the largest), over 94% were white (v. African-American, Asian, American Indian or Alaskan Native, Native Hawaiian/Pacific Islander, Other, or Two or more races) and non-Hispanic (v. Hispanic), and two-thirds were female (Table 1). HA use was reported by 1025 people (64.99%), 244 reported using a CI only (15.47%), and 191 people reported using both HAs and CIs (12.11%). Thus, ~93% of respondents used some form of amplification.

Table 1:

Demographics of survey respondents reported in raw number (n) and percentage of overall respondents (%).

	Demographics	N (%)
Age Category
	18–54	223 (14.22)
	55–64	364 (23.21)
	65–74	499 (31.82)
	75–84	355 (22.64)
	>85	127 (8.10)
Sex
	Male	509 (32.75)
	Female	1040 (66.92)
	Other	5 (0.32)
Race
	White	1467 (94.77)
	Black or African-American	30 (1.93)
	American Indian or Alaska Native	3 (0.19)
	Asian	14 (0.90)
	Native Hawaiian or other Pacific Islander	1 (0.06)
	Other	16 (1.03)
	Two or more races	17 (1.10)
Hispanic/Latino
	Hispanic/Latino	45 (3.12)
	Non-Hispanic/Non-Latino	1398 (96.89)
Device
	Hearing Aid	1025 (64.99)
	Cochlear Implant	244 (15.47)
	Bimodal (both HA and CI)	191 (12.11)
	None	117 (7.42)

Results based on provider

The three most common providers encountered by respondents included physicians, receptionists, and nurses (over 90% reported a recent interaction with each). However, more than 50% of respondents reported having moderate or significant difficulty with hearing or communication with all listed providers (Figure 1).

Figure 1:

Reported level of difficulty (significant, moderate, or little) for each provider. (for clarity, the “Not applicable” category is not plotted) NP = Nurse Practitioner, PA = Physician Assistant.

For communication with physicians, CI users had an association (p = 0.040) with reporting moderate-significant difficulty than those without CIs. For receptionists, the two younger groups, ages 18–54 and 55–64, were more likely to report difficulty, p = 0.028, 95% CIs [1.16, 2.57] and [1.06, 2.12] For nurse practitioners, physician assistants, pharmacists, nurses and parking attendants, no significant associations between categorical demographic variables were found for difficulty communicating.

Results of situational difficulties

Situations where >90% of respondents indicated “sometimes” or “often” experiencing communication difficulties included hearing their name called in the waiting room, having difficulty when the speaker turns away (such as when looking at a computer), and communicating by telephone (Figure 2). The two situations with the least reported difficulty (<40% said “often” or “sometimes”) were having difficulty with directions to the clinic and understanding in examination rooms.

Figure 2:

Reported frequency of difficulty (often, sometimes or never) for each of 12 communication situations. PCP = primary care provider.

Associations between age group and situations were identified. As compared to the youngest cohort, those >85 years of age were more likely to report misunderstanding medical information conveyed by both nurses and physicians, 95% CIs [1.10, 6.16] and [1.07, 4.46]. Those aged 55–64 and 75–84 had were more likely to report difficulty on the telephone, 95% CIs [1.33, 4.39] and [1.16, 4.13] (Table 2). There was an association between loss of privacy and reported sex, with females more likely than males to report they had less privacy during discussions due to their hearing loss, 95%CI [1.17, 1.88]. Hispanic/Latino respondents reported increased difficulty finding their way to appointments or understanding directions, however the number of respondents identifying as Hispanic/Latino was small.

Table 2:

Odds ratio (OR, 95% confidence interval, CI) for 12 communication situations for age groups as compared to the youngest group. PCP = primary care provider. Italicized p values indicate p<0.5.

	Age
	18–54		55–64		65–74		75–84		>85
	OR (CI)	p value	OR (CI)	p value	OR (CI)	p value	OR (CI)	p value	OR (CI)	p value
Difficulty hearing name	reference		0.81 (0.39–1.69)	0.5685	0.91 (0.43–1.91)	0.8070	0.54 (0.26–1.15)	0.1105	0.87 (0.30–2.47)	0.7892
Privacy loss	reference		0.95 (0.66–1.36)	0.7663	0.80 (0.57–1.13)	0.2095	0.56 (0.38–0.81)	0.0020	0.67 (0.41–1.08)	0.0970
Misunderstand scheduling appointments	reference		1.29 (0.81–2.04)	0.2849	1.21 (0.77–1.88)	0.4094	1.00 (0.62–1.61)	0.9973	1.16 (0.61–2.21)	0.6531
Misunderstand medical information from Nurse	reference		1.5 (0.91–2.48)	0.1148	1.14 (0.72–1.83)	0.5724	1.41 (0.83–2.38)	0.2068	2.61 (1.10–6.16)	0.0287
Misunderstand medical information from PCP	reference		1.3 (0.84–2.02)	0.2445	1.03 (0.68–1.55)	0.8967	1.28 (0.81–2.03)	0.2970	2.18 (1.07–4.46)	0.0323
Misunderstand medication instructions	reference		1.54 (0.99–2.42)	0.0579	1.12 (0.74–1.70)	0.5880	0.99 (0.63–1.55)	0.9650	1.32 (0.71–2.44)	0.3769
Provider turns away when talking	reference		0.92 (0.46–1.86)	0.8179	0.56 (0.30–1.08)	0.0829	0.46 (0.24–0.91)	0.0260	0.57 (0.24–1.33)	0.1957
Difficulty understanding if provider turns	reference		2.18 (0.78–6.07)	0.1351	1.48 (0.60–3.65)	0.3935	1.52 (0.57–4.08)	0.4034	0.92 (0.29–2.92)	0.8928
Difficulty with directions	reference		0.98 (0.68–1.42)	0.9182	1.05 (0.74–1.49)	0.7915	0.91(0.62–1.34)	0.6341	1.26 (0.78–2.05)	0.3505
Difficulty in waiting room	reference		1.01 (0.65–1.57)	0.9666	0.85 (0.55–1.29)	0.4375	0.62 (0.40–0.97)	0.0358	0.75 (0.42–1.34)	0.3305
Difficulty in exam room	reference		0.84 (0.59–1.19)	0.3197	0.74 (0.53–1.04)	0.0843	0.69 (0.48–1.00)	0.0517	1.01 (0.63–1.61)	0.9747
Difficulty with phone	reference		2.41(1.33–4.39)	0.0039	1.67(0.97–2.86)	0.0663	2.19(1.16–4.13)	0.0154	1.62(0.72–3.63)	0.2462

Reporting hearing loss and receiving special arrangements

In response to the question “Do you let people in the primary care office know you have hearing loss?” 93% of respondents checked “often” or “sometimes”. For the follow up question, “Do they make special arrangements for you?”, only 24% reported the office “often” made arrangements and 29.3% checked “never.” Of note, CI users were more likely to make office personnel aware of their hearing loss than non-CI users, p < 0.001, 95% CI [3.95, 27.80]. No significant association was found for special arrangements for hearing aid or cochlear implant users (p = 0.880 and p = 0.564 respectively) (Table 3). Associations were also found between reported sex and letting the office know, as well as reported age group and reporting receiving hearing-loss related special arrangements.

Table 3:

Odds ratios for two situations related to patient advocacy (letting the office know and whether the office made arrangements). Italicized p values indicate p<0.5. HL = Hearing loss; OR = odds ratio; CI = confidence Interval

		Let office know about HL		Office made arrangements
Demographics		OR (CI)	p value	OR (CI)	p value
Age	18–54	reference		reference
	55–64	0.96 (0.46–2.02)	0.923	1.67 (1.13–2.46)	0.010
	65–74	1.01 (0.49–2.09)	0.982	1.60 (1.10–2.31)	0.013
	75–84	0.81 (0.38–1.75)	0.602	1.66 (1.11–2.47)	0.014
	>85	1.28 (0.43–3.81)	0.659	1.42 (0.85–2.38)	0.177
Sex	Male	reference		reference
	Female	1.98 (1.24–3.17)	0.004	1.11 (0.84–1.45)	0.448
Device	Hearing Aid	3.21 (1.78–5.77)	<0.001	1.03 (0.72–1.47)	0.880
	Cochlear Implant	10.46 (3.95–27.80)	<0.001	1.10 (0.80–1.51)	0.564

Discussion

These results contribute to our understanding of the difficulties faced by persons with hearing loss as they attempt to navigate situations associated with a typical primary care visit, which include much more than the time spent with the healthcare provider. They also highlight an opportunity for all providers to assess their communication strategies, particularly with individuals with hearing loss, and suggest simple changes in communication strategies and the office environment that could result in important improvements in communication satisfaction.

Each interaction in a primary care office is an occasion for inadequate communication to occur and errors to be made, which could affect an individual’s quality of care, satisfaction, and health outcomes.^15,16 While there are many cues to help receptionists, nurses, and other healthcare personnel be alerted to people with hearing loss, an individual’s communication abilities may not always be apparent¹⁷. In three situations >90% of respondents reported difficulties in communication occurred “sometimes” or “often”: hearing one’s name being called in the waiting room, communicating when providers turned their backs when talking, and understanding information conveyed via telephones. These situations reflect what is currently understood about hearing loss and difficulties communicating and suggest that a few simple and inexpensive modifications could improve patient communication, experiences, and satisfaction in healthcare. Recommendations are described in the next sections to address (1) Provider communication, (2) Waiting rooms and effective listening environments and (3) Telephone use. These changes are possible for the majority of clinics, would not impede workflow, and would efficiently guide effective clinical practice.

Provider communication

For effective communication with a person with hearing loss, face the individual, providing good lighting, and do not cover one’s mouth. Speech should be slightly elevated in level (not shouted), presented clearly and slowly, while not over enunciating. Avoid turning to the computer or medical record to make notes while speaking to individuals with hearing loss and/or their communication partners. Providers should model appropriate one-on-one communication behaviors for communication partners and other personnel.

There is a variety of technology available to facilitate communication. This can include a personal portable amplifier or “pocket talker” in the exam room can facilitate communication. Also consider using voice-to-text dictation services or other written methods to convey messages and instructions, which is included on many smartphone applications.¹⁸

Waiting rooms and listening environment

In the waiting room, approach the individual with hearing loss directly rather than calling their name from a distance, or ask them to sit closer to the door or desk. Office personnel may also want to consider non-verbal methods of alerting patients, which also maintain privacy, including visual methods such as numbered signs or tactile methods such as vibrating alarms. Clinic personnel should remain alert to people who may have difficulty communicating, or are wearing HAs or CIs, and make appropriate accommodations. Once an individual acknowledges a hearing loss or is known to use HAs or CIs, this information should be documented (such as in the electronic health record) so appropriate communication strategies can be used during future visits.

Consideration should be given to installing induction loops in healthcare environment or utilizing clipboards and other office devices with built-in induction loops. Induction loops are sound systems that provide an electromagnetic signal, allowing sound to be directly transmitted to an individual’s hearing aids.¹⁹ Communication in the healthcare office environment should also be improved by using décor that minimizes reverberations, such as adding rugs to bare floors and heavy curtains or blinds over windows.

Telephone use

Given the high level of reported difficulty associated with telephones, alternative communication options should be explored. Messaging services included in electronic health records, text messaging, or email should be utilized. Laboratory results, medications, and appointments should be conveyed via written form, rather than by telephone, to minimize errors. Individuals can also be informed about their eligibility for reduced-cost captioned or amplified phones and smartphone apps that display captioning¹⁸. Captioned phones (such as captel services) display the speaker’s words as text on the screen and is paid for by state funds, although access varies by states.

Identifying hearing loss and individual advocacy

The provider should ask if older adult patients are aware of or seeking treatment for hearing loss, and if so, if they are satisfied with current interventions. Both questions open the door to important, and often overlooked, discussions about interventions and specialists (such as audiologists) to improve care or assess hearing loss. Education is key, as it is quite common for older adults with hearing loss to not recognize their hearing loss, or not know how hearing and communication can be improved. Importantly, the population in this study had already-identified hearing loss. The benefits of hearing loss screening are an area of ongoing research and the current evidence is insufficient to make a recommendation.²⁰

The respondents to this survey uniquely conveyed a strong sense of self-advocacy. Patient advocacy, community and peer support, and improved health literacy are critical to patient success and satisfaction. One resource that individuals can use is a Communication Access Plan, available on the HLAA website, that allows individuals to share their communication needs with the practitioner and have these documented in the medical record.

Interpreter Services for ASL users

While a full discussion is beyond the scope of this article, practitioners need to be aware that most adults with hearing loss do not use American Sign Language (ASL) to communicate and need other forms of communication access. The Americans with Disabilities Act (ADA) requires that appropriate accommodations be made for those who are Deaf and hard of hearing, including amplification and interpretive services, unless providing these services would cause undue burden to the practice.²¹ Effective communication with Deaf patients who primarily use ASL is facilitated best via use of licensed medical interpreters (rather than friends, family or staff).²² If interpreters cannot be made available in person, video relay services or video interpretive services are alternative options. Video relay services allow users of ASL to communicate visually via video devices rather than over a conventional auditory-only telephone or text-based communication (more information can be found at the Federal Communications Commission website).

Study limitations

Given that approximately 93% of respondents reported using some form of amplification, the study sample is not representative of the general population of older adults with hearing loss whose use of amplification is much lower.^23,24 Nevertheless, the use of this sample met the goal of targeting a large population with of adults with hearing loss. Further, although most participants reported using amplification, they still reported significant difficulty communicating, which highlights the need to provide adequate accommodations for all patients.

Nearly all respondents reported that they “sometimes” or “often” informed office personnel about their hearing loss. Because this sample was drawn from a group who visited the HLAA website or are on the email listserv of HLAA, respondents to this survey may be more likely to self-advocate than the general population of people with hearing loss. Research is needed to identify barriers to self-advocacy and opportunities that promote self-advocacy for people with hearing loss.

The reported demographics are unequal in sex, race, and ethnicity (predominately female, Caucasian, and non-Hispanic). This demographically unequal sample makes it difficult to interpret results in terms of interactions between these demographic variables and communication. The use of an online survey may also be a limiting factor given that computer access and internet connection were required.

Clinical Implications.

• Patients with hearing loss report ongoing difficulties communicating with providers and while navigating healthcare settings and primary care providers can expect to see more patients who experience these hidden barriers.

• Effective one-on-one provider communication necessitates facing the individual, providing good lighting, not obstructing one’s mouth and speaking clearly and slowly (not shouting and not over-enunciating). Avoid turning your back while talking.

• The environment should be hearing loss friendly, including having those with hearing loss sit closer to the receptionist, using heavy draping or carpeting to reduce reverberation, and using tactile or visual cues to alert individuals in the waiting room.

• Important health information such as appointment times, medication dosing, and lab results should be conveyed in written form and the telephone should be avoided.

• Additional technological tools (such as induction loops, smartphone apps, and amplification devices) can be utilized on an office-by-office basis.

Appendix Table:

List of questions related to communication in healthcare environments. Question code = abbreviated version of each question

Question	Question Code
When you are in the waiting area, the receptionist may call your name. Do you have difficulty hearing your name being called?	Difficulty hearing name
Do you feel you don’t have privacy in the reception area because of difficulty hearing?	Privacy loss
Do you have difficulty understanding important information (such as date and time of next appointment) spoken by the receptionist?	Misunderstand scheduling appointments
Do you have difficulty understanding important information (such as medical questions, instructions, results) spoken by the nurse or medical assistant?	Misunderstand medical information from Nurse
Do you have difficulty understanding important information (such as medical questions, instructions, results) spoken by the primary care physician, nurse practitioner or physician’s assistant?	Misunderstand medical information from PCP
Do you have difficulty understanding important information (such as schedule/dosing of medications) spoken by the pharmacist, primary care physician, nurse practitioner or physician’s assistant?	Misunderstand medication instructions
During your appointment, does the physician, nurse practitioner, or physician’s assistant turn away while speaking with you to read or make notes on the computer?	Provider turns away when talking
Does this cause you to have difficulty understanding what the physician, nurse practitioner or physician’s assistant is saying?	Difficulty understanding if provider turns
Do you have difficulty finding your way to your primary care appointments because you have difficulty hearing or understanding directions?	Difficulty with directions
Do you have difficulty hearing or understanding in the waiting area because it is too noisy?	Difficulty in waiting room
Do you have difficulty hearing or understanding in the examination room because it is too noisy?	Difficulty in exam room
Do you have difficulty understanding important health information (such as scheduling/cancelling appointments, instructions, results) when listening on the telephone or to a voicemail message?	Difficulty with phone
Do you let people in the primary care office know you have hearing loss?	Let office know about HL
If yes, do they make special arrangements for you?	Office made arrangements