Perceptions and Practices of People with a Total Laryngectomy During COVID-19 Pandemic: A Mixed oMethods Analysis

Abstract

Purpose:

People with a total laryngectomy (PTL) confront safety threats related to altered airway anatomy and risk of adverse events is amplified during healthcare crises, as exemplified by COVID-19 pandemic. Understanding these challenges, how they are navigated by PTL, and what resources can be deployed to alleviate risk can improve interprofessional care by speech-language pathologists (SLPs), otolaryngologists, and other professionals.

Materials and Methods:

An online survey was disseminated to PTL in the United States during the COVID-19 pandemic, querying participants about safety concerns and sources of information accessed to address care. Descriptive statistics and Chi-square were used to analyze information sources consumed by tracheoesophageal, esophageal, and electrolaryngeal speakers. Content analysis was completed to identify themes and quantify responses by subtheme.

Results:

Among 173 respondent PTL, tracheoesophageal speakers preferentially sought otolaryngologist input, whereas esophageal and electrolaryngeal speakers more often chose SLPs (p<.01). Overall, tracheoesophageal speakers had more SLP or otolaryngologist contact. Many PTL reported stringent handwashing, neck cleaning, and hygienic risk mitigation strategies. Six themes emerged in content analysis involving risk of infection/transmission, heightened vigilance, changes to alaryngeal communication, modified tracheostoma coverage, diagnostic testing, and risk from comorbid conditions. Limited provider contact suggested pandemic barriers to healthcare access.

Conclusions:

PTL have a range of laryngectomy-specific needs and concerns, and type of alaryngeal communication was associated with source of information sought. Collaborations among healthcare professionals need to be optimized to improve patient navigation and overall access to specialized care.

1.1. INTRODUCTION

Persons with total laryngectomy (PTL) face complex challenges in safety, swallowing, and communication arising from a permanent tracheostoma and altered airway anatomy. These chronic challenges were accentuated during the COVID-19 pandemic (Varghese, Aithal, & Rajashekhar, 2021). Droplet and aerosolization of respiratory secretions are primary transmission routes of SARS-CoV-2 (Heyd et al., 2020; van Doremalen et al., 2020; Yong & Chen, 2020), and in PTL, the presence of a permanent tracheostoma alters the airflow route, with unclear implications for risk of viral entry or transmission (Bertolin et al., 2022; Hennessy et al., 2020; Kligerman et al., 2020). Although, fomite (surface-to-surface) spread of SARS-CoV-2 plays a lesser role in transmission than droplet and aerosol routes, it can still occur (Meyerowitz, Richterman, Gandhi, & Sax, 2021). PTL frequently need to touch the stoma to clean mucus, remove and place heat-moisture exchangers (HME), manage tracheoesophageal (TE) voice prostheses, and generate TE voice (Yeung, Lai, Wong, & Chan, 2020). PTL may also be at increased risk of transmitting COVID-19 to others through aerosolization and droplets if they cough with the tracheostoma uncovered. Concerns have been raised about such transmission to speech-language pathologists (SLPs) and other providers during clinical encounters involving aerosol generating procedures (American Speech-Language-Hearing Association, 2020; Zaga et al., 2020). Such concerns have led to several recommendations for clinical care of PTL to mitigate COVID-19 transmission risks (Longobardi et al., 2020; Zaga et al., 2020). The transmission risk in the PTL’s home environment is evidenced by reports of high rates of infection among family cohabitating with people with a laryngectomy who are COVID-19 positive (Ricciardiello et al., 2021).

Individuals with cancer are at an elevated risk of experiencing serious complications from the virus (Ballatore et al., 2022; Dai et al., 2020; Guan et al., 2020; Gupta et al., 2021; Roel et al., 2022; Shahidsales et al., 2021). Head and neck cancer patients, including PTL, may face a higher risk than the general cancer population due to factors such as older age and comorbidities like cardiac disease and chronic obstructive pulmonary disease that are associated with increased mortality or complications from COVID-19 (Adjei Boakye, Jenkins, & Sharma, 2020; Govender et al., 2021). PTL who have contracted COVID-19 may require prolonged hospitalization and intensive care (Coleman, Sutherland, & Calder, 2020; Fabbris, Boaria, Boscolo-Rizzo, Emanuelli, & Spinato, 2021; Gallo et al., 2020; Paderno et al., 2020; T. R. Patel, Teitcher, Tajudeen, & Revenaugh, 2020; Schmid, Prattes, Kaufmann-Bühler, & Riedl, 2021). Govender and colleagues (2021) reviewed COVID-19 data for PTL (n = 1216 from 26 hospitals) gathered over a 5-month period during the first lockdown in the United Kingdom. Among PTL who tested positive for COVID-19, 83% required hospital admission with a median length of stay of 26 days, and one-third required admission to the intensive care unit. Alarmingly, 50% of the PTL group who tested positive for COVID-19 died within a month of the positive test, although these data predate availability of COVID-19 vaccines. Nonetheless, the data highlight the serious health risk to PTL related to COVID-19 infection. These data argue for a concerted effort to educate this patient group about ways to mitigate risk. COVID-19 vaccination is recommended for individuals with weakened immune systems (Desai et al., 2021; Hwang, Zhang, Wang, & Li, 2021). Specific to PTL, Govender et al. (2021) found that only one-third of PTL had received COVID-19 related advice from their healthcare provider(s) or from the government.

Limited education and guidance, which has been a longstanding challenge for PTL, were accentuated in the setting of pandemic. A survey conducted in the United States (US) revealed that only 54% of PTL had been contacted by their SLP or an otolaryngologist between March and August of 2020. Among those contacted, only 24% reported receiving counseling specific to pandemic challenges during those encounters (Searl, Kearney, Genoa, & Doyle, 2021). The quality of life of PTL was disproportionately affected during the pandemic compared to other head and neck cancer patients particularly in social and physical functioning as measured by the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLC-C30) (Gallo et al., 2021).

In this study, we investigated the sources of information sought by PTL residing in the US, including analysis by type of alaryngeal communication used and age. This approach was motivated by prior research suggesting differential healthcare utilization (Searl et al., 2021) and generational differences in preferred sources for health information (Figuerias et al., 2021). Additionally, this study included a thematic analysis of pandemic-related concerns of PTL, aiming to optimize patient-centered care for this population.

1.2. METHODS

1.2.1. Institutional Review Board Approval

The study was approved by the Institutional Review Board at the lead authors institution (IRB #00004592).

1.2.2. Questionnaire Development

The questionnaire was developed using Qualtrics Survey Software (Provo, UT) to address a wide range of issues of potential relevance to PTL during the COVID-19 pandemic. The study team queried respondents about their sources of information for managing laryngectomy-related care during the pandemic and their concerns. To establish face and content validity, three SLPs not affiliated with the research team (>5 years of clinical experience working with PTL) and three PTL reviewed the survey and provided feedback about the content, clarity, comprehensibility and relevance of the survey questions. Based on this review, an original set of 9 separate questions about sources of information was restructured into a single question asking PTL to choose up to three sources of information. The single open-ended question asking for description of concerns about being a person with a laryngectomy during the pandemic remained unchanged.

1.2.3. Distribution of Survey

Links to the survey were posted to Facebook groups that primarily consist of PTL members, including Laryngectomy Support; Lary’s Voice; WebWhispers Facebook Group; International Association of Laryngectomees; Esophageal Speech Support; Head, Neck, Throat, and Oral Cancer Group; Laryngectomy-Glossectomy Support; Let’s Talk Laryngectomy Support Group; Smokey Mountain Head, Neck, Throat and Oral Cancer. Additionally, the authors emailed the link to professional contacts, vendors (InHealth Technologies, ATOS Medical, Lauder Enterprises), and patient support group leaders, all of whom were encouraged to distribute the link to PTL. Thus, a combination of targeted recruitment and snowball sampling were employed.

1.2.4. Data Analysis

Survey participants were asked to identify up to three people or sources of information they utilized for questions or concerns about being a PTL during the COVID-19 pandemic. Nine choices were offered (see Table 1) including an open-ended option. Percentages of respondents choosing 1, 2, or 3 sources were calculated, along with the percentage of individuals who did not make any selection. Given the small number of individuals reporting use of pneumatic artificial larynx, Augmented and Alternative Communication (AAC), or mouthed speech, the analysis was limited to the three primary alaryngeal communication methods, i.e., tracheoesophageal puncture (TEP), esophageal speech (ES), and electrolarynx speech (EL). A 3 × 3 contingency table was constructed based on the 3 alaryngeal communication methods (TEP, ES, EL) and the 3 options for number of sources accessed (one, two, or three), and a chi-square statistic was computed to evaluate the distribution of responses. Additionally, the number of respondents selecting each of the eight specific information sources offered in the question was calculated based on the alaryngeal communication method. A series of 2 (yes, no) x 3 (TEP, ES, EL) contingency tables were constructed, and chi-square analysis was completed to assess the distribution of responses based on the alaryngeal speech mode.

Table 1.

The number of information sources selected by respondents in each alaryngeal communication group reported as a frequency count (n) and percentage (%).

Number of Information Sources	Electrolarynx Speech (N = 43)		Esophageal Speech (N = 15)		Tracheo-esophageal Speech (N = 98)		Total (N = 156)
	n	%	n	%	n	%	n	%
1	7	16%	2	15%	4	4%	13	8%
2	13	30%	6	39%	18	18%	37	24%
3+	23	53%	7	46%	71	72%	10	65%
							1
Missing	0	0%	0	0%	5	5%	5	3%

To assess whether the sources of information differed based on respondent age, the data were recategorized into three age groups: < 50 years old (n = 15), 50 – 65 years (n = 74), and > 65 years (n = 84). These age ranges were chosen to reflect younger, intermediate, and older age groups. Percentages and contingency tables with chi-square statistics were applied to the age-categorized responses in a similar manner to the analysis conducted for alaryngeal communication mode. A probability value of less than .05 was considered statistically significant for all omnibus chi-square tests. When an omnibus test was significant, post hoc chi-square tests of all paired comparisons were performed and a Tukey correction was applied.

To capture concerns of PTL during the COVID-19 pandemic, respondents were asked, “What concerns do you have about being a person with a laryngectomy during the COVID-19 outbreak?” Qualitative responses were analyzed following guidelines from Erlingsson and Brysiewicz (2017). Trained research assistants worked in pairs to conduct content analysis, which involved identifying meaning units (reducing the verbatim response to the core meaning) and then coding the meaning units to group them into themes and subthemes. Themes represented groups of coded meaning units that encompassed related concepts, actions, or feelings. After the consensus process, two senior researchers independently reviewed the theme structure and survey item responses, addressing any areas of disagreement or alternative perspectives. This feedback was shared with the research assistants for further discussion and consensus decision-making to finalize the theme structure.

1.3. RESULTS

1.3.1. Respondents and Sources of Information by Alaryngeal Communication Group

Respondents to the survey included 173 individuals over the age of 18 years who had undergone a total laryngectomy and resided in the US. The respondents identified themselves as male (65%), with a reported mean age of 64 years (SD =10; range: 28–91 years) at time of the survey. The overall mean age at the time of laryngectomy reported by the respondents was 57 years (SD = 11; range: 27–86 years). The majority of participants race were white (88%), and most identified as not Hispanic or Latino. The years of laryngectomy spanned from 1986 – 2020 (median: 2015; IQR 2011–2018). The primary methods of alaryngeal communication were distributed as follows: 98 (57%) TEP, 43 (25%) EL speech, 15 (9%) ES speech, 10 (6%) AAC, 5 (3%) mouthed speech or no means of talking, and 2 (1%) pneumatic artificial larynx. Information about surgical and chemoradiation history was gathered through the survey but could not be confirmed via chart review or other means given the anonymous nature of the survey. Of note, 24% of respondents reported being unsure of their cancer treatment details, and an additional 4% did not respond to this survey item. These missing data were excluded from the data analysis.

The number of information sources selected by respondents from each of the 3 alaryngeal communication groups is presented in Table 1. The selection of information sources (one, two, or three) differed significantly across alaryngeal communication groups (χ² = 11.70, p = .019). Post hoc chi-square testing of each pair of communication methods revealed a significant difference between the EL and TE groups (χ² = 8.96, p = .011) with a higher percentage of TE speakers selecting three sources of information compared to those in the EL group. There were no significant differences in the distribution of responses between ES and EL groups (χ² = 0.49, p = .784) or the ES and TE groups (χ² = 5.95, p = .051).

The number and percentage of respondents from the three alaryngeal communication groups who selected each information source are reported in Table 2. The omnibus chi-square test results indicated significant differences in the proportions of respondents from each group who identified otolaryngologists, SLPs, family, and television as information sources. Post hoc testing for otolaryngologist contact revealed a difference between the ES and TE groups (χ² = 8.48, p = .004), with a higher proportion of the TE group identifying an otolaryngologist as an information source. The TE group also had a higher proportion choosing the SLP as an information source compared to the ES (χ² = 11.12, p = .001) and the EL groups (χ² = 14.82, p < .001). A significantly greater proportion of the ES group selected family as an information source compared to the TE group (χ² = 8.71, p = .003). Lastly, there was a higher proportion of the TE group who identified television as an information source compared to the EL group (χ² = 21.33, p < .001).

Table 2.

The frequency count (n) and percentage (%) of respondents in each alaryngeal communication group who selected each information source with the associated chi-square values (χ²) and probabilities (p).

Information Source	Total (N = 151)		Electro-larynx use (N=43)		Esophageal Speech (N=15)		Tracheo-esophageal (N=93)1		χ2	p
	n	%	n	%	n	%	N	%
Otolaryngology	74	49%	17	40%	2	13%	50	54%	8.2	.017
SLP	77	51%	13	30%	3	20%	61	66%	20.6	<.001
PCP	59	39%	20	47%	3	20%	36	39%	2.4	.31
Family & friends	18	12%	8	19%	5	33%	7	8%	6.9	.03
Support group	66	44%	19	44%	6	40%	40	43%	0.1	.94
Internet, Social Media	32	21%	12	28%	6	40%	15	16%	4.8	.09
Television	15	10%	4	9%	5	33%	47	51%	6.4	.04
Other sources	11	7%	5	11%	0	0%	7	8%	2.7	.26

¹Five of the 98 TE speakers did not respond to this item.

Abbreviations: SLP = Speech-Language Pathologist, PCP = primary care provider

1.3.2. Sources of Information by Age Group

The number of information sources selected by respondents from the three age groups is presented in Table 3. There was no significant difference in the proportion of respondents within each age group selecting one, two, or three sources of information (χ² = 10.16, p = .118).

Table 3.

The number of information sources selected by respondents in each age group reported as a frequency count (n) and percentage (%).

Number of Information Sources	≤ 50 years (N = 15)		51 – 65 years (N = 69)		≥ 65 (N = 72)
	n	%	n	%	n	%
One	1	7%	6	8%	6	8%
Two	4	27%	19	27%	9	13%
Three	10	66%	43	63%	51	71%
Missing	0	0%	1	1%	6	8%

The number and percentage of respondents from the three age groups who selected each information source are reported in Table 4. There was a significant difference in the proportion of each group who identified television as an information source. Specifically, a significantly larger proportion of those ≥ 65 years old selected television compared to those who were 51 – 65 years old (χ² = 6.99, p = .008). There was no difference in the proportion choosing television as an information source when comparing those over 65 years to those under 50 years old (χ² = 2.30, p = .130).

Table 4.

The frequency count (n) and percentage (%) of respondents in each age group who selected each information source with the associated chi-square values (χ²) and probabilities (p). SLP = Speech-Language Pathologist.

Information Source	Total (N = 151)		≤ 50 years (N = 15)		51–65 years (N = 66)1		≥ 65 years (N = 70)2		χ2	p
	n	%	n	%	n	%	n	%
Otolaryngology	68	45%	6	40%	34	52%	28	40%	1.5	.46
SLP	81	54%	8	53%	36	55%	37	53%	0.0	.99
PCP	67	44%	4	27%	26	39%	37	53%	4.2	.12
Family&friends	18	12%	3	20%	8	12%	7	10%	1.3	.52
Support group	68	45%	5	33%	30	45%	33	47%	1.5	.47
Internet, Social Media	30	20%	5	33%	13	20%	12	17%	3.0	.23
Television	23	15%	1	1%	5	8%	17	24%	9.7	.008
Other sources	7	5%	1	1%	4	6%	2	3%	0.6	.73

¹Three respondents in this age group did not respond to this survey item

²Two respondents in this age group did not respond to this survey item

1.3.4. Concerns About Being a Person with a Laryngectomy During the COVID-19 Pandemic

Table 5 provides the six themes, some with subthemes, resulting from the content analysis. Representative comments within each theme and subtheme are provided in Table 6. The largest proportion of responses (50%) addressed issues about risks associated with the novel coronavirus including infection risks, serious health impacts, and transmission of the virus. The second largest percentage of responses (25%) were related to COVID-19 mitigation strategies, involving their own heightened vigilance and concerns about others not adhering to guidelines. The third theme (24%) involved respondents perceiving concerns similar to the general population. The fourth theme (15%) focused on changes or challenges with alaryngeal communication, HME use, or stoma/neck care. The final two themes were expressions of concern about COVID-19 testing procedures or adequacy of healthcare if they became sick (11%) and more vaguely stated health concerns, often relating to comorbidities such as immunosuppressed state (9%). This latter category often included brief mentions of a specific conditions (e.g., COPD) without further explicit linkage to COVID-19. Eleven respondents (7%) did not answer this survey question.

Table 5.

Thematic structure from the content analysis regarding concerns about being a person with a laryngectomy during the COVID-19 pandemic, including frequency count (n) and percentage of responses (%) falling within the themes and subthemes.

Theme/Sub-themes	Defining Features	Theme Statistics		Sub-Theme Statistics
		n	%	n	%
1. Risks of Infection, Transmission, Impact	Concerns about infection, transmission, or serious impacts on health or perceptions of others	75	50%
a. Infection because of neck-breathing	More direct route of infection through stoma			29	19%
b. Serious COVID-19 impact and other health concerns if infected	Non-specific statements about potentially elevated risk of infection or significant concern for health if infected			24	16%
c. Infection because of touching stoma	Elevated infection risk due to voicing and/or need to clean or manage stoma			11	7%
d. Perceptions of others and mental health impact	Concern how others perceive them because of coughing, stoma, voice, etc.; indications of isolation or loneliness			6	4%
e. Transmission because of neck-breathing	Concern of breathing or coughing out the stoma which could spread the virus			5	3%
2. Vigilance About COVID-19 Guidelines	Extent to which COVID-19 guidelines are followed and by whom	38	25%
a. Heightened vigilance	Following guidelines to a greater degree than the general population			34	23%
b. Noncompliance by others	Health concern because others in the community were not following recommended guidelines			4	3%
3. No Concerns	Definitive statement of no or very limited concern relative to other people	36	24%
4. Changes to Communication & Stoma Care	Changes, challenges, and comments about alaryngeal communication or stoma care during the COVID-19 pandemic	22	15%
5. Adequacy of COVID-19 testing and care	Concerns about swab testing location and quality of healthcare if they get COVID-19.	17	11%
6. Health concerns related to comorbid conditions	Health statements relating to COPD, immunosuppression, or other vulnerabilities	14	9%

Table 6.

Representative responses for themes and sub-themes.

Theme/Sub-themes	Representative Responses
Risks of Infection, Transmission, Impact
a. Infection because of neck-breathing	“Seems like we could breathe [sic] it in easier through our stoma than people breathing through their nose and mouth.” “My breathing is always a concern, and the virus attacks your breathing. I am a bit anxious about sucking the virous [sic] straight into my airway.” “I worry about breathing in the virus. It seems we are more likely to suck it in directly to our lungs which scares me a bit.”
b. Serious COVID-19 impact and other health concerns if infected	“My concerns are that I will not survive an infection of the virus.” “That if I got the virus I would probably die.” “Rapid unalterable deterioration into a condition with… untimely death.”
c. Infection because of touching stoma	“I am glad to wear the HME if it helps protect my lungs somewhat but then I have some concern that I am messing around with my HME for cleaning and replacing, which puts my hands to my stoma more [sic].” “I think about if my hands touching counters or doorknobs at stores might pick up the virus and bring it back to my neck when I clean it off at night and in the morning.” “Because of how I breath and also using TE speech, I have to touch my neck a lot. I pay much more attention to cleaning my hands first now‥”
d. Perceptions of others and mental health impact	“People already looked at me funny if I coughed or talked when I was out. Now I think they move away from me even more when I have a sudden cough. Makes me more self-conscious about being out.” “I feel like people may be more concerned about being around me because they know me and how I breath [sic] differently.” “I don’t want people to think I am coughing because of COVID… So that makes me try to hold back the cough a lot more and try to get to a place by myself where I can take off my hands-free valve and really clear the mucus.”
e. Transmission because of neck-breathing	“I’ve read on Facebook sites that I might be more susceptible at getting or giving the virus because of how we breath [sic]. That makes me nervous to be out and it makes me nervous to even have my family over.” “The amount of coughing that I do worries me some. I wear a filter but not all the time and if I cough, I spray drops everywhere. This isn’t a problem outside the house since I always have the filter on then, but in the house, I feel like I can spread germs and maybe COVID is the same.” “I have a little concern I may spread it if I get it because I cough quite a bit still. So now I try to cover up and block my coughs with my hand - important now with my grandkids around a lot!”
Vigilance About COVID-19 Guidelines
a. Heightened vigilance	“I feel like I have been extra cautious about staying home - better than the rest of my family and my friends. That seems like the smart thing to do with being a neck breather.” “I really want to wear the special HME filter all the time, even [at] home because my grandson lives here, and he goes out to work every day. So I worry what he might bring back. Even in the house he and I have a routine to try to stay apart from each other which just stinks.” “I would like some better covering over my stoma. It is my weak point for getting the virus into my body and the HME feels safer than what I was doing before. I generally am more protective of my personal space and stay even more than 6 feet away. And I am more protective of my stoma. I cover it better and wash it more often.”
b. Noncompliance by others	“I feel like people in my state aren’t being very careful, so I have to be even more careful for myself since I breath through my neck.” “Concerned about people who refuse to wear a mask at any time.” “People in public not wearing a mask.”
No Concerns
	“No more than the usual person I guess.” “I don’t really feel like I have more concerns than the usual person. Most of my time is spent at home or in my yard. Not being around people too often makes me feel pretty safe so far.” “None really. I am pretty careful and dont [sic] leave the house much except to walk the dog.”
Changes to Communication & Stoma Care
	“I also learned that it was a good thing to be good with the electrolarnx! Never imagined I would need to shift from my esophageal speech, but the electro comes in handy when talking through plexiglass shields or when I have to stay further away from people to talk.” “I try to wear my HME even more in the event it can help protect my airway even a little bit.” “I started to watch some online videos about esophageal speech. This seems the best for COVID because you wouldn’t even have to putch [sic] the EL toward your face and neck.” “I also have a gargly sounding voice so the phone is a problem but now I use the phone more often. I wish I had a better way to communicate because all these technology ways are just not that great for my kind of voice.” “I am more protective of my stoma. I cover it better and wash it more often.” “As I mentioned, my voice is weak and trying to talk from further away or using the phone more to stay in touch creates some problems for how well people understand me.” “Cleanliness around the HME and stoma is mostly what I think about. I know I can control this for the most part so I do what I can.”
Adequacy of COVID-19 Testing and Care
	“There are the additional anxieties about IF I did test positive for COVID and if I ended up needing hospital care. Without COVID it’s already a… scary experience, explaining to them that my mouth and nose [are] no longer connected to my [respiratory] system, to put oxygen on my neck only. If I was having breathing troubles that would be concerning to have to teach them to DIY me a neck breathing connection.” “Worries for any care that would be needed in hospital due to the fact that caregiver would not be able to accompany any stay or needed appointment and in our area it is very rare so many people including Drs and Nurses are not familiar with how to care for a Lary.” “My biggest concern is what is the proper way of swabbing, or does it matter, stoma? nose? throat?”
Health concerns related to comorbid conditions
	“Breathing after laryngectomy is much hard [sic]. Peripheral Oxygen level swings from 90 to 96% vs before 98%.” “I have COPD.” “Low immune level.” “I think my lungs might be weaker since my lary surgery so I get careful about lung infections.”

1.4. DISCUSSION

The concerns of PTL are not always reflected in public policy and the healthcare capacity strain during the pandemic highlighted unmet needs within the PTL community. This cross-sectional survey afforded a window into the perspectives and practices of PTL, with most respondents expressing pandemic-related concerns with laryngectomy status. This finding is consistent with the observation that care and services of PTL is often siloed or fragmented. PTL differed in their approach to seeking care based on their alaryngeal speech mode (TE, ES, or EL), and many reported making modifications to either mode of communication or management of their tracheostoma, emphasizing the need for tailored interprofessional approaches to laryngectomy care. Furthermore, qualitative analysis revealed several themes around pandemic care that can inform efforts at preventing, treating, or rehabilitating functional challenges when future healthcare crises arise.

1.4.1. Sources of Information

Type of alaryngeal communication used by PTL was associated with their preferred information sources. Individuals using TE speech more often sought healthcare expertise than respondents in the EL and ES groups. This is consistent with the ongoing appointments needed to manage their TE voice prostheses for device-related care and replacement. This hypothesis is supported by previous work by Searl et al. (2021), which noted that TE speakers reported a higher number of SLP visits than persons using EL or ES speech, both before and during the COVID-19 pandemic. Differences were also found in other sources of information used by PTL. Television was identified by more TE speakers than EL users, whereas family was cited more commonly as an information source for ES vs. TE speakers. The age distribution of respondents in TE and EL groups was similar, with 22% and 21% (TE and EL) in the younger group, 55% and 63% in the middle group, and 23% and 16% in the older group, suggesting that age had limited role in explaining the observed differences. Health information seeking is a complicated and complex phenomenon influenced by many interrelated factors, including a person’s age, race, culture, income, and education level (e.g., (Figueiras, Ghorayeb, Coutinho, Marôco, & Thomas, 2021; Malecki, Keating, & Safdar, 2021; Pew Research Center, 2017). Understanding where PTL seek information can inform healthcare professionals on how to educate patients during the current and future pandemics.

The proliferation of pandemic-related information can be overwhelming for people, regardless of whether they have undergone a laryngectomy or not. The abundance of information has been referred to as an “infodemic” (Naeem & Bhatti, 2020). Trust in information sources is associated with adherence to behavioral and health changes, including during the pandemic (Figueiras et al., 2021; Fridman, Lucas, Henke, & Zigler, 2020; Van Scoy et al., 2021). False or misleading information about appropriate infection risk-reduction behaviors has affected head and neck cancer patients (Guven et al., 2020; Zomerdijk et al., 2021). Cancer patients generally prefer receiving information from their direct care providers (Baabdullah et al., 2020). Yet, only about half of the PTL respondents in the current survey selected their SLP and otolaryngologist as information sources, and even fewer chose their primary care physician. These results indicating that about 50% of patients seek advice from medical providers are consistent with data gathered from a heterogenous group of head and neck cancer patients and caregivers that included some PTL (16.4% of 171 respondents) (Yan et al., 2021). For PTL, SLPs and other members of the head and neck cancer care team may play a crucial role in providing guidelines and information to mitigate risks. It is the case that PTL made decisions independent from their healthcare team about changes to HME use and alaryngeal communication that could have been informed or supported by their SLP, otolaryngologist, and others (Searl, Genoa, Fritz, Kearney, & Doyle, 2023)

1.4.2. Concerns about Being a Person with a Laryngectomy

Over three quarters of respondents in our study reported pandemic-related concerns about their laryngectomy status, with themes emphasizing safety, care practices, and uncertainties. Risk of infection and heightened vigilance were prominent themes. Many PTL perceived an increased susceptibility to infection related to their altered airway and the need for frequent touching of the tracheostoma and neck. This concern is evident in comments about increased handwashing, neck cleaning, and other hygienic activities compared to before the pandemic. Some respondents commented that their own risk mitigation practice was more stringent than the general public. Bertolin et al. (2022) reported that 52% of PTL felt they were at a higher risk of contracting COVID-19. Roughly 70%−90% of cancer patients in general report fear of contracting COVID-19 (Ballatore et al., 2022; Ferrara, Langiano, Falese, De Marco, & De Vito, 2021; Guven et al., 2020; Moraliyage et al., 2021; Zomerdijk et al., 2021), and heightened adherence to hand washing, social isolation, and other mitigation strategies has been reported across cancer patient populations (Musche et al., 2020). Among head and neck cancer patients specifically, 49.1% reported that contracting COVID-19 was their main concern (Yan et al., 2021) The comments from the respondents in this study reflect deep concerns for risk of contracting COVID-19, with some expressing fears of death. Such concerns have some grounding in what has subsequently been learned about the risk to PTL. For example, not only is the incidence of COVID-19 significantly higher in laryngeal and hypopharyngeal cancer population (18.8%) compared to those without cancer (10.8%), but PTL diagnosed with COVID-19 had a significantly higher risk than cancer patients without laryngectomy for developing pneumonia, death, and respiratory failure (N. D. Patel et al., 2023). In contrast, reports from the general public conducted during the pandemic indicated a substantially smaller percentage of persons concerned about contracting the virus themselves (11%) with a larger percentage concerned about the health of their loved ones (46%) (Hutchins, 2020; Mertens, Gerritsen, Duijndam, Salemink, & Engelhard, 2020).

Several PTL reported making a change to their mode of communication or stoma care regimen, and many noted increased use of an HME and/or wearing a mask over the stoma. Both of these changes align with the guidelines published regarding infection mitigation strategies for PTL (Kligerman et al., 2020; Parrinello, Missale, Sampieri, Carobbio, & Peretti, 2020; Ricciardiello et al., 2021; Varghese et al., 2021; Yeung et al., 2020). Interestingly only 15% of survey respondents reported changes to HME or stoma coverage, suggesting a role for SLPs, nurses, and otolaryngologists in educating PTL about their options during respiratory-based pandemics. The changes in alaryngeal communication reported during the pandemic varied. For example, one person who primarily uses ES as a communication method indicated an increased use of EL when they needed a louder voice (e.g., talking through a plexiglass shield, or when standing further from people). Another ES user mentioned a weak voice and the challenges it created when talking on the phone or standing at a distance from people. This person might have benefited from learning to use an EL in certain situations. Another respondent reported using ES during the pandemic because it was perceived as the most hygienic option. Nearly a quarter of PTL in the survey expressed minimal pandemic-related concerns, similar to surveys of the general public reporting 19% to 24% who had concern about contracting the virus (Cori et al., 2021; Kowalczuk & Gębski, 2021). Although this sense of security could alleviate anxiety, PTL should be cognizant of the heightened risk of severe COVID-19 in individuals with cancer, advanced age, prior respiratory disease, and other chronic health conditions.

1.4.3. Limitations

This cross-sectional survey sheds light on the experiences of PTL during the pandemic; however, the study has several limitations that influence the interpretation of findings. These caveats relate to survey-based design, survey instrument, sampling method, and data capture. The survey instrument, although developed with input from healthcare professionals and PTL, was not validated and did not incorporate all professionals that PTL might encounter, for example advanced practice providers, nurses, respiratory therapists, otolaryngologists, medical/radiation oncologists, or social workers. Additionally, the survey instrument, designed to minimize survey fatigue, selectively captured clinical data at a granular level, which could not be verified. For instance, details about surgical and chemoradiation history or comorbid conditions obtained from the survey were limited and could not be corroborated through chart review or other means. Furthermore, the survey did not collect data on the reasons why PTL chose specific professionals or sources for medical information.

The targeted recruitment and snowball sampling approach likely biased the sample towards individuals who use social media platforms and the other venues where the survey was disseminated. Therefore, the participants may not fully represent the entire population of PTL. The survey is also susceptible to recall bias, since it relied on participants’ ability to accurately recall and report information, potentially leading to overestimation of salient sources of information or experiences, while underestimating others. The capture of data at a single point in time precluded longitudinal assessment and made it difficult to determine how the pandemic findings differed from baseline or post-pandemic era. Consequently, the findings of associations do not necessarily indicate causal relationships. Last, although the findings have contemporary relevance, public health concerns and technology evolve rapidly and the applicability of these findings to baseline or future pandemics remains uncertain.

1.4.4. Implications for Practice and Research

The findings of this study have implications both for clinical practice and future research. As an initial step, clinicians can identify PTL on their caseloads, including those who do not seek regular visits, which is common among PTL who use ES or EL speech. Electronic medical record system notification functions can facilitate outreach and help to close educational gaps. The thematic results highlight the need for tailored approaches to alaryngeal communication, HME use, stoma coverage, and other issues during the COVID-19 pandemic. SLPs, head and neck nurses, and otolaryngologists all have a role in educating patients, engaging in shared decision-making, and teaching new skills, such as introducing a secondary communication method. Understanding how PTL responded to the COVID-19 pandemic, where they sought information, and their specific concerns affords insights for SLPs and head and neck cancer teams to inform current practice and response to future pandemics. The Centers for Disease Control and Preventions (CDC) has emphasized the importance of planning for future events, stating, “While we can’t predict exactly when or where the next epidemic or pandemic will begin, we know one is coming” (Centers for Disease Control and Prevention (CDC), 2021), and it will most likely be respiratory-viral in nature (Gray & Abdelgadir, 2021). The ongoing need for education and the prospect of future pandemics underscores the need for proactive approaches to ensure optimal patient-centered care for PTL.

In terms of research, validation of the survey tools would enhance construct validity and its reliability to ensure that it effectively captures the experiences and perspectives of PTL during healthcare crises. Conducting longitudinal studies would provide a more comprehensive understanding of how the experiences and needs of PTL evolve over time during healthcare crises. Longitudinal assessments would also allow for comparisons between different phases of the pandemic or between pandemics, providing insights into the dynamic nature of their experiences. Future studies should investigate the effectiveness of various communication channels and educational interventions as it would help identify the most valuable sources of information and enhance the dissemination of crucial guidance. Research should also explore potential health disparities among PTL individuals during healthcare crises, including disparities related to race, ethnicity, socioeconomic status, and geographical location. Identifying and addressing these disparities would contribute to the development of equitable and accessible care strategies.

1.4.5. Conclusions

PTL navigate a complex array of healthcare challenges that are magnified during healthcare crises. This study revealed how the COVID-19 pandemic shaped the perspectives and experiences of PTL, with prominent themes revolving around communication and safety concerns. Access to information is critical for all individuals navigating healthcare crises, and this need is particularly significant for PTL due to complex considerations around alaryngeal speech, management of the laryngectomy stoma, and viral transmission. The finding that only half of PTL identified an SLP or otolaryngologist as a source of information suggests an opportunity to strengthen channels of communication. Strategies to improve education include proactive outreach to PTL when access to healthcare is limited, using automated alerts or telemedicine, and actively disseminating best practices for PTL-specific care.