Study design and setting

This was a qualitative descriptive [20,21] study using focus groups and interviews. We focused on medical or surgical inpatient care at acute care hospitals in Alberta.

Participants and recruitment

We invited adults living in Alberta that self-reported both hearing loss and being hospitalized within an Alberta hospital in the last 5 years to participate. Support persons were also invited. Participants were recruited between June 13, 2023 and February 14, 2024. We used convenience sampling to recruit participants through posters distributed electronically through non-profit organizations throughout Alberta or approached directly while receiving hospital care in Calgary. Participants were not known to the researchers prior to the study. We recruited until we reached saturation of both demographics (i.e., a diverse sample based on participant demographics including age, self-reported gender, place of residence, primary spoken language, and self-reported socio-demographics) and participant experiences (i.e., no new ideas were presented) [22]. To achieve demographic saturation, we reviewed the demographic characteristics of our participants following completion of the focus groups and purposively recruited additional people for individual interviews if key demographic gaps were found [23,24]. To achieve saturation of participant experiences, analyses were conducted concurrently with recruitment, and we continued to recruit until we felt no new themes were emerging. Complete data analysis details are described below.

Of consenting participants, one withdrew from the study and one was lost to follow up; both had been recruited directly in hospital (one participant requested to withdraw during the interview, and one participant was unable to be reached by telephone to complete the interview). One support person participated in a focus group; however, due to the small sample of support persons, their contributions were not included in our analysis.

This study was approved by the University of Calgary Conjoint Health Research Ethics Board and all participants provided written informed consent.

Data collection and analysis

Prior to the focus groups or interviews, participants were asked to complete a brief questionnaire related to their self-reported socio-demographics, hearing level, and hospital utilization. Both in-person and online focus groups were offered. In-person focus groups were held at partner community organization facilities in Edmonton and Calgary. The virtual focus group was facilitated via Microsoft Teams. Real-time captioning was provided both in-person and virtually by a live Communication Access Real Time (CART) captioner.

Focus group discussions and individual interviews were facilitated using semi-structured guides (S1 File), developed by members of the research team (ML, AD, SR, NV) based on hearing loss and healthcare communication literature and personal experience of patient partners. To explore patient communication experiences, we designed the guide around an existing communication framework [25] that proposed 4 key factors that can impact communication. To identify potential tools and strategies, we asked questions in alignment with the Alberta Health Services (AHS) Communication Access 6 Strategies framework [26].

Focus groups were co-led by a research associate (ML) and a patient partner (SR). Interviews were conducted by a research coordinator (AD) either in-person at the patient’s bedside or over the phone based on participant preference. Field notes were taken by a research coordinator (AD) during both focus groups and interviews to document contextual information not captured in the discussions. Non-participants who were present at the time of the focus groups included CART captioners and representatives from the partnering organization where the focus groups were held. Comments from non-participants were not included in our analyses. No non-participants were present during the individual interviews. CART captioning was provided during focus groups and was also available for interviews if requested. All focus groups and interviews were audio recorded and transcribed verbatim by a professional transcriptionist experienced in qualitative research transcribing, and de-identified transcripts were uploaded into NVivo14 to facilitate data management and coding.

We implemented a conventional content analysis approach using an abductive thematic coding method to analyze the data [27]. First, we deductively coded the data using the Feldman-Stewart Framework for Communication [17]. We also coded the data using the AHS Communication Access 6 Strategies for Communication [26], a guide developed by allied health professionals and communication specialists to help health professionals communicate with patients with speech, language, or hearing difficulties. We then inductively added new codes outside of these frameworks as directed by the knowledge and expertise of participants. After the focus groups were completed, participant characteristics and field notes were reviewed to ensure diverse perspectives were included and that no new ideas emerged. This analysis occurred while the additional interviews were conducted.

Each transcript was coded independently by two coders trained in qualitative analysis including a research coordinator (AD) and a patient partner (NV) who met regularly to review emergent codes and discuss discrepancies. Other members of the research team (ML, MD) and another patient partner (SR) joined consensus meetings to address discrepancies. Coding occurred iteratively until consensus was reached. We also produced a summarized list of findings and invited participants to provide feedback across two virtual reflective sessions or via email based on participant preference. Reflective sessions lasted approximately one hour and were co-led by a research coordinator (AD) and two patient partners (SR, NV). Live captioning was provided by a CART captioner. Reflective sessions were conducted pre-analysis and served to help us interpret results and ensure initial findings were consistent with participant experiences. When all transcripts were coded and collated, the coders met to discuss and produce a final list of themes.

Reflexivity

This study was conducted by a multidisciplinary team of academic researchers, clinicians, allied health professionals with diverse backgrounds in health services research and clinical service, and in partnership with community organizations focused on hearing loss. The Principal Investigator (MT) is a male nephrologist and researcher with a special interest in supporting patients with hearing loss. ML contributed to study design and analysis and facilitated focus group discussions. She has a PhD in Health Services Research and experienced in qualitative research. AD took field notes during the discussions, individually interviewed participants, and analyzed the data. She is a Research Coordinator with an MSc in Psychology and was trained on how to take field notes, code transcripts, and interview participants prior to the start of the study by ML. Throughout all stages of this project, we also collaborated with two patient partners (SR, NV); both are women with lived experience of hearing loss, hearing device use (SR wears a cochlear implant, NV wears hearing aids), and hospital encounters. NV and AD coded the transcripts; NV has received qualitative research training through the University of Calgary’s Patient and Community Engagement Research (PaCER) program.

Our analyses used a combination of validated frameworks and participant experiences, allowing for a mix of deductive findings based on communication literature and inductive findings based on participant expertise and experience. Findings were reviewed by the larger study team and community organizations to help ensure our findings were accurate reflections of the data and that our language and interpretations were meaningful to Alberta’s hearing loss community.

Theme 1: Hearing loss is an invisible disability

Theme 2: Communication is a team effort

Theme 3: Every patient has different needs in different situations

Hearing loss is an invisible disability

Because hearing loss is not always apparent to others, challenges with communication may go unnoticed, and hence people with hearing loss are often under-supported. In some circumstances, patients may advocate for themselves by letting their healthcare providers know they have hearing loss, but others do not due to stigma or worries of causing inconvenience [29]. In our study, some participants perceived that it may be easier to access supports for physical disabilities than for communication needs. Others have also found that compared to those with physical disabilities, hearing-related needs were perceived to be often overlooked and unaccommodated [30]. Additionally, people with hearing loss often experience perceived or real stigmatizing attitudes in the form of ageism or ableism [11]. Thus, it is suggested that efforts are needed at the provider, institutional, and societal level to change the culture in healthcare, emphasizing each patient’s right to effective communication.

In addition, stigma-reduction interventions are critical to help create equitable access to health and other services. First, public health and advocacy organizations may help reduce stigma by increasing the visibility of hearing loss. For example, the World Health Organization (WHO) promotes World Hearing Day each year on March 3 and distributes educational and advocacy materials broadly [31]. Second, helping healthcare providers become aware of their attitudes and behaviour may help reduce stigma in patients with hearing loss. For example, a scale was recently developed and validated [32] to help providers become aware of their own stigmatizing attitudes and identify areas for change. Finally, encouraging people with hearing loss to feel empowered and advocate for themselves can help reduce feelings of stigmatization. While some may avoid help seeking or attempt to mask their condition by physically hiding hearing devices or pretending to understand what is being said [29,30], others have noted that using humor and maintaining a positive attitude, ignoring or confronting stigmatizing attitudes or people, self-advocacy, educating others about hearing loss, and learning to accept their hearing loss can effectively reduce stigma [30].

Communication is a team effort

Participants in our study felt that patients (with hearing and communication supports), healthcare providers, and the healthcare system all play a role in ensuring good communication. While providers and the healthcare system have a responsibility to provide the tools, training, and policies to accommodate, patients should also be encouraged to inform their providers of their communication needs.

However, people do not always feel comfortable acknowledging their hearing challenges [29]. One study of adult inpatients at a urban hospital found that 72.8% had audiometric hearing loss; however, only 28.8% of these patients self-reported having difficulty hearing physicians and nurses [33]. Reasons for this discrepancy could include fears of stigmatization or discrimination [11], perceptions that hearing loss is not as important as other medical concerns [29], or influenced by individual patient needs and circumstances as discussed below. In addition, other research has also found that patients feared creating an additional burden for healthcare staff, and hearing loss was only disclosed if patients’ felt their provider showed interest, care, and concern about their communication difficulties [34]. Similar sentiments were also shared by participants in another qualitative study, who noted that familiarity and comfort with who they were speaking with influenced how likely they were to disclose their hearing loss [29].

Therefore, we suggest that healthcare providers be equipped with the skills, responsibility, and confidence to identify patients with hearing loss and communicate effectively. In our study, many participants called for improved sensitivity training, and noted that simple strategies such as being patient, empathetic, and respectful would help to improve communication.

Training healthcare providers on how to recognize hearing loss and understand the impact it may have on health and communication may help providers become better equipped to accommodate communication needs. Previous qualitative work has found that healthcare providers’ lack of awareness about hearing loss and patients’ communication needs were barriers to care [35]. Survey data has further revealed that only 3.5% of healthcare providers received formal training about how to communicate with patients with hearing loss, thus amplifying the urgency of formal training to understand and address the communication needs of this population, as well as familiarity with assistive technologies [36]. Finally, a participatory action study [37] of capacity building among healthcare providers to support communication with Deaf and hard of hearing patients found providers often felt ill-equipped to support these patients, and suggested that training for healthcare providers should be co-developed and led by patients with hearing loss, and include awareness of hearing loss and how it impacts patients, communication strategies such as speaking slowly and clearly, scenario and role-playing exercises, and improved awareness of and easy access to existing communication resources. Ultimately, this study found that this capacity building intervention was effective in increasing self-efficacy among healthcare providers.

Staff capacity-building initiatives have also been successful in supporting communication for patients with other communication needs such as aphasia. In one study of healthcare providers working on a stroke rehabilitation unit, providers helped to develop guidelines, a training course, and communication tools to support communication with aphasia patients. Through these practices, providers showed an increased understanding and reduced frustration during communication, and felt confident in using communication techniques such as slower speech, facing the patient, use of written or picture information, and allowing extra time for communication [38].

Other institutional policies and procedures such as documenting the presence of hearing loss in the medical record may help inform and remind providers about a patient’s communication needs and preferred accommodations [39], without relying on patients to repeatedly disclose their condition. Participants in our study indicated that communication tools (e.g., assisted listening devices or real time captioning) were sometimes available in theory; however, physical or policy barriers such as a tool being locked up or in use elsewhere often reduced their accessibility when needed. Thus, we suggest that providing healthcare providers with a variety of communication tools and strategies that are easily accessible [40] will help patients communicate in a way that is most comfortable for them.

Every patient has different needs in different situations

Participants expressed that there is great variety in needs and preferences for communication supports. Therefore, different tools and strategies should be available to accommodate each person in a full range of clinical situations. A recent scoping review identified several communication strategies that can be used by healthcare providers that can be applied to a variety of situations and patient needs and preferences [41].

The clinical setting in which patients with hearing loss are receiving care may also impact which communication tool or strategy is most appropriate. In one-on-one appointments, private rooms, or reasonably quiet environments, strategies such as increasing speech volume, body language adjustments, or captioning may be helpful. However, settings such as a busy emergency department where patients are not able to communicate in a one-on-one setting and there is excessive background noise will require other strategies. Patients with hearing loss also may have trouble hearing their name called in busy waiting rooms [42], so strategies such as written or visual cues to indicate when their name has been called are helpful. In addition, while one study found that providing sound amplifiers to patients with hearing loss in the emergency room helpful in facilitating communication [43], many emergency departments may not be equipped to do so. Finally, patients also report difficulty hearing over the phone [12], so in-person care, virtual meetings, or written information such as text or email-based information appointment reminders may be preferable.

Through qualitative discussions with patients with hearing loss, we propose simple strategies to better meet the needs of patients with hearing loss, with opportunities for improvement existing at the patient, provider, and healthcare system levels [44]. Patients should be encouraged and supported to disclose their hearing challenges and advocate for what they need; however, such disclosure must be reciprocated by commensurate supports. Additional training may be helpful in supporting healthcare providers to better identify hearing loss-related communication challenges and accommodate patients’ needs. In addition, communication tools should be easily available, and processes to identify and document communication needs within the medical record should be implemented. Initiatives by local groups such as the Communication Access team within Alberta Health Services are currently working to improve communication for patients with communication difficulties by providing publicly available tools and resources and training modules for healthcare providers. These initiatives may help address all three barriers identified in this report by increasing the visibility of communication needs, enabling healthcare providers with the skills and knowledge to accommodate patients with communication needs, and encouraging facilities to invest in a variety of tools and strategies to meet the diversity in patient needs. These efforts and relatively simple changes proposed in this report would be expected to promote meaningful patient participation in health care, thereby improving patient empowerment, shared decision making, and improved satisfaction with care [45].

Study strengths and limitations

This study has many strengths. We included a diverse sample of people with hearing loss from across Alberta with a range of demographics, hospital experiences, types of hearing loss, and hearing device use. We used a comprehensive and community-based recruitment process and provided captioning by a CART professional to ensure participation in the discussions was accessible. The group interaction of a focus group allowed participants to have a rich conversation and build ideas from one another. Discussions were transcribed verbatim, and coding was based on validated and established frameworks. Finally, this work was completed amongst a collaborative study team including academic researchers, clinicians, health system leaders, and patient partners who have lived experience with hearing loss.

This study also has limitations to consider. First, we focused on the experience of Albertans with hearing loss while in the hospital, and so findings may not reflect the experiences of those in other settings. Second, we asked participants to reflect on a prior hospital encounter (up to 2–3 years prior to the focus group or interview) which may have limited accuracy of shared experiences due to recall bias or memory distortion. Third, only two participants lived in a rural location, and no one with a significant language difficulty or had low socioeconomic status participated, so the findings and suggestions we propose in this report may not fully reflect the experiences of these groups. Lastly, we excluded people who identified solely as Deaf, because the communication tools and strategies to support those who are hard of hearing likely differ from those that would benefit people in the Deaf community. As such, our findings may not be fully generalizable to the broader Deaf and hard of hearing community.