Understanding Cognitive and Emotional Illness Representations of South Asian Head and Neck Cancer Survivors: A Qualitative Study

Abstract

Objectives:

Head and neck cancer (HNC) constitutes a substantial portion of the cancer burden worldwide, with over 550,000 new cases and over 300,000 deaths annually, with disproportionately high mortality rates in the developing countries. The large majority of HNCs are caused by tobacco use, and synergistic effects of tobacco and alcohol use. Using the Common-Sense Model (CSM) as a framework, this qualitative study sought to understand South Asian HNC survivors’ cognitive and emotional representations of their cancer; and to assess if these representations differ by smokeless tobacco (SLT) vs. smoked tobacco use.

Design:

In-depth semi-structured interviews, conducted with South Asian HNC survivors (N = 15, 80% participants were immigrants, while 20% came to United States for treatment) to identify key themes and issues related to HNC experience and SLT vs. smoked tobacco use.

Results:

The results of the study provide a deeper understanding of South Asian HNC survivor experiences with receiving a HNC diagnosis, delays in seeking treatment and related medical care, disagreement regarding smoked tobacco/SLT history as potential causes of cancer, strategies to cure the cancer or prevent recurrence, enduring physical and psycho-social consequences of treatment, and emotional impact of the cancer experience. Three key implications emerged: (a) the utility of narratives as a method of eliciting HNC survivor experience to understand patient experiences and concerns; (b) the potential for public health practitioners to harness patients’ voices and the power of storytelling for developing campaigns about public awareness of SLT use, providing information and support to SLT users, and encouraging SLT quitting resources; and (c) the importance of providing clear, personalized and culturally sensitive education regarding the risks of SLT use.

Conclusions:

This study underscores the significance of offering tailored tobacco cessation services to South Asian HNC survivors, and to help inform supportive models of care for others.

Head and neck cancer (HNC) constitutes a substantial portion of the cancer burden worldwide, with over 550,000 new cases and over 185,000 deaths annually, with disproportionately high incidence and mortality rates in the developing countries (Ferlay et al. 2015; Gupta, Johnson, and Kumar 2016). For instance, data from the World Health Organization’s (WHO’s) Global Health Observatory estimates in South-Central Asia (including countries like India, Pakistan, Bangladesh, Nepal, and Sri Lanka), HNCs constitute the 2^nd most frequent cancers, with an estimated 159,750 new cases in 2018 (9.2% of all new cases), compared to the worldwide statistics, where HNCs constitute the 17^th most frequent cancers, with an estimated 354,864 new cases in 2018 (1.96% of all new cases) (WHO 2018). HNCs include cancers in the oral cavity, including the lips, the inside lining of the lips and cheeks (buccal mucosa), the teeth, the gums, the front two-thirds of the tongue, the floor of the mouth below the tongue, and the bony roof of the mouth (hard palate), the pharynx, the larynx, the paranasal sinuses and nasal cavity, and the salivary glands (NCI, 2018). HNCs are particularly deadly and survivors often experience significant psychosocial distress from treatments that cause disfigurement and functional impairment (Henry et al., 2014). Recent meta-analysis indicates that a large majority of HNCs are caused by tobacco use (Asthana et al. 2018) and synergistic effects of tobacco and alcohol use (Chaturvedi et al. 2011; Hashibe et al. 2009). Human papillomavirus (HPV) is also a risk factor for HNC (Chaturvedi et al. 2011; Chung, Bagheri, & D'Souza, 2014).

Smokeless tobacco (SLT) and others forms of tobacco use are highly prevalent in South Asian countries, particularly India, Bangladesh, Bhutan, Maldives, Nepal, Pakistan, and Sri Lanka (Glenn et al. 2009). For instance, the prevalence of adult SLT use in USA is at 2.6%, compared with 25.9% in India, 31.7% in Bangladesh, and 7.7% in Pakistan (WHO 2018). SLT products most frequently used by South Asians include zarda, paan masala, gutka, and betel quid with tobacco, cigarettes, hookah, and bidi (Mayne, Morse, and Winn 2006; Messina et al., 2013; Krishna Rao et al. 2013). Immigrants from South Asian nations to the United States, Canada, and United Kingdom often continue to use several forms of tobacco. Consequently, the HNC incidence and prevalence rates in these populations is quite high (Auluck et al. 2009; Liu et al., 2008; Walker et al. 2015). The WHO estimates that by 2030, more than 80% of tobacco deaths will be in developing countries (WHO 2017).

In order to reduce the risk of cancer recurrence, improve patients’ performance status and quality of life, and reduce rates of morbidity and mortality in HNC patients (McCarter et al. 2016), it is important to understand the cancer-related experiences of HNC survivors and the relationship of these experiences to tobacco-related beliefs. A systematic review on psychosocial experience of living with HNC suggests six conceptual categories that describe the experience of patients in extant qualitative research: uncertainty and waiting (describes a transitional, undecided state with volatile emotions), disruption to daily life (describes the physical, emotional, and social consequences of living with HNC), the diminished self (describes the feeling that the consequences of their illnesses will be long lasting, and losses that damage their self-confidence and self-esteem), making sense of the experience (describes the ways patients attempt to understand their illness through their own experiences with their symptoms and treatment and the information from providers), sharing the burden (describes development of supportive connections with family, friends, wider social network, health care providers, and other people with HNC that help patients to cope emotionally and practically with their illness), and finding the path (describes patients’ perspectives on their lives after their cancer) (Lang, France, Williams, Humphris, and Wells, 2013). Similar research on psychosocial experiences of South Asian HNC survivors is still lacking, barring individual studies detailed below.

A recent study conducted in India revealed that HNC survivors experience myriad emotions - sadness, anxiety, loss of hope, fear, and blame – affected by their knowledge of the illness and the duration of untreated illness. In the study, HNC survivors described utilization of various coping strategies including keeping a positive attitude, developing a strong faith in the doctor and/or God, ventilating emotions with supportive family/friends, and participating in activities that divert attention (Jagannathan and Juvva 2016). In the United States, South Asian patients’ experience with the illness may (or may not) be compounded by their immigrant status. Identifying unique issues faced by minority HNC survivors, in particular South Asian HNC survivors may yield insight into potential disparities observed in the given population.

Leventhal’s Common-Sense Model (CSM; Leventhal, Phillips and Burns 2016) is a well-established theoretical framework that describes multiple aspects of individuals’ self-regulative behaviors (Leventhal 1997; McAndrew et al., 2006). The CSM has been used to explain cognitions and emotional responses to cancer diagnoses that impact patient adjustment. The CSM is useful for conceptualizing how survivors manage illness and emotional reactions during the transition from active treatment to self-management. The CSM organizes responses into two basic types of representations: a) perception of health threat or cognitive representation/illness cognition of health threat; and b) emotional reaction to health threat or emotional representation of health threat.

The CSM suggests that the cognitive representation is comprised of five different components, regardless of the severity of illness. Specifically, patient’s beliefs about the illness’ identity (i.e., specific diagnosis and symptoms related to the illness), cause (i.e., the experienced antecedents believed to have initiated the illness), time-course (i.e., experienced and expected time for the development/ onset of the cancer and its likely duration, e.g., months, years, lifetime and life ending), controllability (i.e., strategies that can be used to cure the illness or prevent recurrence), and consequences (i.e., financial, social, emotional, and behavioral impacts) contribute to the patient’s overall illness cognition (Leventhal 1997; Rabin and Pinto 2006). Furthermore, an emotional representation in tandem with the cognitive representation further explains the emotional impact of the illness given the cognitive representation (i.e. how one feels about having cancer). The complete bundle of illness representations helps create understanding of the threat of illness in order to inform and activate the individual.

This qualitative study used the CSM as a framework to examine how South Asian HNC survivors describe their cancer experience. To address existing gaps in the literature, in particular, we sought to understand South Asian HNC survivors’ cognitive and emotional representation of their HNC cancer. We also assessed if these representations differ by kind of tobacco used (smokeless tobacco vs. smoked tobacco).

Methods

Research Design

The current research study was a semi-structured qualitative study (SSQS), addressing exploratory, open-ended questions (Blandford, 2013). To ensure authenticity in interviewee responses, we employed an “active interviewing” approach (Maxwell, 1996), using open-ended questions and participant’s responses to direct the flow of the conversation (Bernard and Ryan 1998), and thematic analysis using CSM as a theoretical lens for interpreting the interview data.

Participants and Procedures

In-depth interviews were conducted with fifteen (N = 15; 14 males, 1 female) South Asian HNC survivors, recruited from Head and Neck Cancer clinics of a comprehensive cancer center in the North Eastern United States. Eighty percent of the participants (n = 12) were immigrants, while 20% (n = 3) came from their respective South Asian home countries to United States for treatment. Inclusion criteria included: South Asian, English-speaking proficiency, past or current SLT/Cigarette user, HNC cancer survivor 0-5 years post-treatment completion, and willing to participate in an audio-recorded interview. All data collection procedures were approved by the Institutional Review Board at the comprehensive cancer center.

Participants were recruited by two research assistants (NH, JT) and the first author (SB) from HNC clinics. We partnered with three attending physicians from the Head and Neck Service who permitted us to recruit patients from their clinics. Upon identifying potentially eligible patients (n = 34) from the patient database, we called them by phone and informed them about the nature of the study and invited them to participate in an interview following their upcoming appointment with their Attending Physician. Seven patients refused participation and twelve patients were deemed late ineligible (e.g., lost contact, missed or canceled interview appointment, etc). We completed interviews with 15 patients. Each semi-structured interview was completed face-to-face and lasted approximately 15-20 minutes. All interviews were conducted by specially trained interviewers (SB, NH, JT). The research assistants on the team (NH, JT) transcribed the interviews within 48 hours of its completion. All identifiers were removed from the transcription.

Interview Guide

The interview included three distinct sub-sections: 1) the interviewee told the interviewer about his/her smoked tobacco or SLT use (or both, in cases of dual use), HNC diagnosis, and cancer journey in his/her own way without time limits or instruction from the interviewer; 2) the interviewer asked follow-up questions about topics introduced in sub-section 1, to elicit further stories, more details or seek clarification; and, 3) the interviewer asked specific questions of interest in the study that were not addressed in sub-sections 1 or 2. Table 1 presents a list of questions and sub-questions.

Table 1.

List of Interview Question and Sub-Question Prompts for SLT User and Cigarette Smoker.

	SLT User	Cigarette Smoker
1.	Now, please tell us your life story since you were diagnosed with head and neck cancer? Please tell us all the experiences and the events which were important for you, personally, and up to now. Start wherever you like. Please take the time you need. We will listen first, and will not interrupt. I’ll just take some notes in case I have any further questions for after you’ve finished telling us about it all.
	All further questions relevant to the research (if unanswered in their narrative). Such as:
2.	Tell us more about your smokeless tobacco use habit. When did you start using smokeless tobacco? How often did you use it initially? Did the pattern of use change over years?	Tell us more about your cigarette smoking habit. When did you start smoking cigarettes? How often did you use it? Did the pattern of use change over years?
3.	Did you think there was any association between your smokeless tobacco use and head and neck cancer? How did you come to that realization?	Did you think there was any association between your cigarette smoking and head and neck cancer? How did you come to that realization?
4.	What would you tell current smokeless tobacco users who refuse to believe that smokeless tobacco use can cause cancer?	What would you tell current cigarette smokers who refuse to believe that smoking can cause cancer?
5.	What were the circumstances that led to diagnosis? Did you ever go for head and neck cancer screening?	What were the circumstances that led to diagnosis? Did you ever go for head and neck cancer screening?
6.	Please recollect and tell me your initial reactions when you received the diagnosis of cancer.	Please recollect and tell me your initial reactions when you received the diagnosis of cancer.
7.	Some people think that by exercising regularly or by eating healthy, one can avoid the adverse effects of smokeless tobacco use? What would you tell them?	Some people think that by exercising regularly or by eating healthy, one can avoid the adverse effects of cigarette smoking? What would you tell them?
8.	What was the role of your faith in understanding your cancer diagnosis and helping you cope with cancer?	What was the role of your faith in understanding your cancer diagnosis and helping you cope with cancer?
9.	What are your suggestions for using faith/religion to educate people regarding the harms of smokeless tobacco use?	What are your suggestions for using faith/religion to educate people regarding the harms of cigarette smoking?
10.	What advice would you give to people who are addicted to smokeless tobacco use?	What advice would you give to people who are addicted to cigarette smoking?
11.	Do you know anyone in your family or friends who have (or had) head and neck cancer? Please tell us about them.	Do you know anyone in your family or friends who have (or had) head and neck cancer? Please tell us about them.
12.	What had been your dental practices/behaviors prior to head and neck cancer diagnosis?	What had been your dental practices/behaviors prior to head and neck cancer diagnosis?

Data Analysis

The thematic text analysis approach utilizing the theoretical lens of CSM (Leventhal, 1997) was employed to analyze text from semi-structured in-depth interviews and involved a rigorous review and interpretation of interviews (Blandford, 2013). When reviewing the text from the interviews, the team focused on describing and interpreting participant comments regarding SLT use and/or HNC experience. A coding team consisting of the two PIs (SB and MCR), clinical research supervisor (LF) and RSAs (NH and JT) analyzed the transcripts using ATLAS.ti, a commonly used qualitative computer data analysis software program to facilitate the analytic process.

As a first step, we generated initial codes using the process of open coding and developed and modified codes as we worked through the coding process. Each coding team member independently read two interviews and developed codes that emerged. Second, the team met to review their individual coding and established emerging codes, followed by reaching agreement about how to apply the codes to the quoted interview texts. Third, we examined the codes and collated them into broader descriptive and interpretive themes that aligned with the CSM: five components of the cognitive representation (i.e., identity, cause, time-course, controllability, and consequences) and emotional representation (categorized as positive, negative, and mixed emotions). We continued this process of independent coding followed by consensus work until all the interviews were coded into themes (Braun & Clarke, 2006).

Results

Participants (n = 15) ranged in age from 56 to 72 years (Mean = 62.73, SD = 5.04). Most participants were SLT users (n = 11, 73.3%), four participants (26.7%) were cigarette smokers, and four participants were dual (using both cigarettes as well as SLT) users (26.7%). Most of the participants lived in United States (n = 11, 73.3%) and were born in India (n = 10) and Pakistan (n = 1). The others (n = 4, 26.7%) were born and lived in India and came to United States for their treatment. The results are presented for each of the five components of cognitive representation (see Supplemental Table 2) and for emotional representation (see Supplemental Table 3). Group differences by type of tobacco use are highlighted for themes, as applicable. Quotes are identified by the participant ID number (P#).

Cognitive Representations

Identity.

In describing their illness identity, all participants provided complex and detailed accounts of their diagnosis experiences. Most of the participants named the type of cancer they had and the region where they had it, varying from cheek, nasal cavity, oral cavity, tongue, and tonsil. The participants clearly described the initial appearance of a blister, ulcer, whitehead, or pimple in the oral cavity or pain that led a visit to the dentist. In most of the cases, the participants tried antibiotics or other prescribed medications that did not improve the condition, and they were directly referred for a biopsy, as illustrated in the example below:

My personal doctor, yes. In [city in India], he was-he told me “Look. Here’s an antibiotic. Take it. It’s a whitehead. If all this goes away, the irritation goes away, then it’s fine. Otherwise, I would suggest a biopsy”. So, several days, nothing happened. The whitehead went away, the irritation remained. So I went to my dentist. He looked at it, and to do some work, he took the tube and he told me “Look, I think you get a biopsy done”. Then in [city in India], we talked to a doctor or 2. Went, got a biopsy. And then on a Sunday, I came to know that I had-it was malignant. Whatever was there was malignant. [P#5, cigarette smoker]

Some participants described a lengthier process, whereby they were referred to go to their primary care physician, who prescribed some initial medicines, a waiting and watching period, followed by reoccurrence of a blister, ulcer, whitehead, or pimple, and then referred them for biopsy.

Cause.

All participants discussed potential causes of their cancer. There were varied responses regarding the cause of cancer, ranging from participant acknowledgement that their tobacco use caused the cancer to uncertainty where the participants were not sure if their tobacco use caused the cancer to denial that their tobacco use caused cancer, but deflecting the cancer diagnosis to other things. Several patients reported advising family, friends and co-workers s to quit using tobacco by quoting their own example. There was no consistent theme regarding physician advice to patients to quit tobacco use; some physicians made a clear recommendation for quitting while others implicitly recommended quitting by discussing potential cause of the cancer but did not make a specific recommendation. There were also some missed opportunities, where the physicians failed to provide a tobacco cessation recommendation to their patient.

Among people who acknowledged that tobacco use caused the cancer, one participant described that he discovered the association between tobacco use and HNC; another participant described she knew it was unhealthy as her family members and loved ones advised her to quit; and a third patient described that he had heard it from his doctor and then believed in it. The examples next illustrate the three scenarios:

I have no other bad habits, no cancer in the family. So, this (SLT use, specifically, paan parag) is the only thing that caused it. [P#8, SLT user]

You know, my husband always says, “stop tobacco,” but I didn’t listen. Even he-when doctor told me to go to biopsy, I did not listen. My daughter – she always say… [P#9, SLT user]

Dr. X told me if you don’t smoke now, but the vapor you use stay inside body and cause problem. [P#6, dual user]

Among participants who expressed ambivalence about their tobacco use and HNC diagnosis, a couple of participants clearly stated that that they had quit multiple years back, so were unsure if their prior use led to the HNC diagnosis. One of the participants was a former smoker, but had quit and lived a healthy life, so he was unsure of what caused the diagnosis. The participant mentioned that his doctor blamed it on bad luck. Another participant described his chewing tobacco habit, but expressed uncertainty that tobacco use caused the cancer. He blamed the cancer diagnosis on multiple reasons including God, heredity, etc.

God knows…some people eat, but some people no eat, then they suffer from cancer. God gives…heredity or whatever. [P#14, SLT user]

In many of the cases noted above, there was clearly a missed opportunity by the physician to address patients’ ambivalence regarding what may have caused the cancer.

Timeline.

The timeline was explicitly described by a majority of the participants and included mention of a specific month or year of diagnosis. The different aspects of timeline that participants described included: a) diagnosis and treatment timeline: the timeframe from the appearance of the mole/lesion/ulcer to diagnosis, and/or the timeframe from diagnosis to treatment; b) tobacco initiation and/or cessation timeline: the timeframe of when they started using SLT or cigarettes and when they quit; and c) single versus recurrent disease episode(s): the timeframe of when they were diagnosed and finished treatment versus a recurrent timeframe pattern. The three examples below illustrate the three different aspects of timeline that the participants described:

When diagnosed in last ‘14, 2014, in July and I visit and the surgery on September 2014. Um, then after three, four months, I start work. Then after, by air travel, by road travel, no problem. [P#14, SLT user)

You know, uh, uh, I used to chew the betel nut and then I threw it out in 1999, I gave it up in 1999, and then in ‘12, 2012, you know, I think I detect it… [P#15, SLT user]

So four years ago I went to the ENT doctor in Long Island because I was having trouble breathing from one of the sinuses….They did the MRI, the CAT scan, the this-that blah blah blah and then they did the surgery 4 years ago in January 2014. So after that we have been following it up every year and then see it. And last time when I visited Dr. S. So then either he had a suspicion or whatever so he said let me do the biopsy and the biopsy was sent and then again he said that inverted papilloma has come back so now they are going to do another surgery. [P#2, Cigarette Smoker]

Controllability.

Controllability was discussed by several participants and included strategies to cure or treat the cancer, strategies to control the side effects of cancer treatment, and strategies to prevent recurrence. First, almost all the participants described the varied treatments they had undergone to cure their cancer, and included surgery only, or surgery plus radiation, or surgery plus radiation plus chemotherapy. This information was typically presented in a factual manner, with some participants noting that they had surgery to remove the tumor, and others describing the pre-surgical details as well as presenting more information about the surgery. For instance, one participant described:

Dr. X first time look and then he gave me an appointment. Last year he made a surgery. But when I came first time to Dr. X then he say, in 20 days I go on vacation so when I come back then we do surgery. But 2nd time he give me appointment after 1 week, he changed his mind and made the surgery date immediate, and we stayed in the hospital 12 days. On surgery date we came back early morning 6 o’clock to the hospital. Then he made surgery; 24 hours he made the injection. Maybe 12-14 hours he was in surgery. After 24 hours I woke up… [P#6, SLT user]

The above example describes in detail how the surgery date was decided and time it took for the surgery to be completed. This description was more factual and did not describe any thought or emotions the patient felt at the time. In contrast, the example below exemplified a key moment that the participant remembered before surgery and described an emotional response that he experienced as a response to an empathic nurse:

I came in the morning quarter to 6. 7 o’clock they took me in. Between 6 and 7 there was a delightful lady who came in and said “I’ll say a prayer for you”. That touched me. Then, brought tears to my eyes [tearing up]. Then I went in. After that I don’t remember what happened. [P#5, Cigarette Smoker]

Second, participants described various behavioral strategies they utilized to control the side effects of treatment in an attempt to minimize disruption and resume their lives. These strategies primarily included swallowing therapy and speech therapy, and were utilized to decrease the intensity of the side effects that caused problems associated with eating, swallowing, drinking, and talking. Participants also described walking, exercising, and engagement in other physical activities to resume living.

The third and final kind of controllability described by participants included two types of strategies for preventing cancer recurrence: tobacco use cessation and tobacco use reduction. Some participants described SLT and/or smoking cessation, while others described reducing tobacco use (and a few even went back to using tobacco). Among participants who made attempts to quit tobacco use, some participants described quitting immediately upon diagnosis, but others described quitting tobacco use multiple years before their cancer diagnosis. For instance, one participant quit tobacco about 20 years prior to his cancer diagnosis.

I used tobacco but only little. You know Indian saint, Asaram Bapu. I go in his asharam. I used to hear his cassettes. He say that tobacco no good, tobacco makes cancer. He tried to make good people. Smoke, tobacco, he didn’t like. He says don’t use tobacco, don’t use cigarette, so I quit already before. Now it’s ok. [P#6, SLT user]

In the above example, participant described that the teachings of his spiritual leader motivated him to quit tobacco use. Other participants described their own strong will to quit tobacco once they became aware of the health risks of tobacco use. One participant quit because he heeded the advice of his doctor, exemplifying the significance of clear physician recommendation. Finally, a couple of participants described their struggles with quitting tobacco use, remained quit for some time, but eventually relapsed and started using tobacco again.

Consequence.

Participants described varied kinds of consequences of the cancer diagnosis and treatment, broadly divided into physical and psycho-social consequences. Physical consequences included difficulties with chewing and/or swallowing, speech problems, pain, and appearance issues. Often, patients experienced more than one of these physical consequences of treatment, as illustrated in the following examples:

One thing is, I cannot eat. I have to eat pureed food [P#4, SLT user]

When I came out, I was not able to speak. I was not able to write because (2:14; IA). I was scared, because you can’t speak. You can’t write. You can’t eat! How can you survive? [P#10, Cigarette Smoker]

Most of the participants who described these physical consequences framed these as major life changing events, but a couple of patients framed these as temporary, minor changes, which were now resolved. One participant noted this new change in eating and drinking behaviors as a difficult adjustment period.

Participants also described psycho-social consequences of treatment by focusing on limited life expectancy leading to unfinished family responsibilities, and worry about spouse, children, and family. The examples presented next illustrate participants’ thoughts and worries about limited life expectancies.

I worried because I think that cancer is not with long life. I did BSc with chemistry. I know if cancer, not long life [P#6, SLT user]

I thought that my game was up, but people here have given us a lot of hope. [P#8, SLT user]

Some participants further added to these thoughts by presenting their added worries regarding not being able to see kids grow, leaving their spouse to subsequently be alone, and not being able to fulfill all family responsibilities. One participant described that how cancer diagnosis motivated him to channel his thoughts and behaviors in a proper manner, because he had limited life expectancy:

I am just damage that my life could end, so it is the bonus time so I can use the bonus time in proper segments and proper time. [P#1, SLT user]

Emotional Representations

Emotional responses to the cancer diagnosis, going through treatment and side effects, and post-treatment were described by all the participants. These varied emotions are categorized into three sub-themes: negative emotions (i.e., feelings that cause a person to be miserable and sad), positive emotions (i.e., pleasant or desirable feelings experienced by a person), and mixed emotions (a combination of both positive and negative emotions).

Negative emotions.

Participants described experiencing a large variety of negative emotions including sadness, guilt, astonishment, fear, and anger. When participants described sadness, sometimes they presented their own feelings about it, and sometimes feelings experienced by family members, as in the examples below:

I was so depressed. My son, everyone here, my son was cry…[crying] [P#9, SLT user]

And I was in no pain. In fact she was in much more pain. [P#5, Cigarette Smoker]

Participants also expressed astonishment, fear, and guilt for having their family experience cancer. Sometimes, participants described two different emotions that they experienced as they went through the different stages of cancer experience. The examples below highlight these varied emotions:

…lot of fear…, didn’t know what to expect, in the beginning. So, at that point we were just trying to scramble-to decide, you know, what should we do and, you know, it was very, you know, a lot of things to do in the beginning. So, there was not much time to think, but certainly it was a lot of things to absorb and…scary, you know. [P#11, Cigarette Smoker]

It was very difficult for me and at one point I saw that everyone at home was getting troubled because of me and I thought maybe I should go (i.e., die, and then then patient starts crying…) [P#16, SLT user]

Positive emotions.

Participants described two main positive emotions that helped them stay optimistic about their recovery and prognosis: optimism, and gratitude towards the medical team. Many participants described the significance of staying hopeful and keeping themselves mentally strong regarding their prognosis, as in the next two examples:

Everyday brought new hope to me: tomorrow the pain will be less. [P#5, Cigarette Smoker]

Mentally, I prepare and uh, I strong. Whatever happen, it happen, that’s it. [P#14, SLT user]

In a few of the cases, participants described getting the positivity from their physicians that not only motivated them to stay hopeful, but they also felt gratitude towards the physician and the medical team.

If you believe in the doctor like you know I had a very positive attitude that nothing is going to go wrong and after that there is no problem. And he, the doctor assured me, the surgeon assured me and I didn’t have any problem. So if I am to recommend to somebody that what you should do is that you have to be positive about it. Yeah. You are to trust actually. You cannot be like doubting that hospitals are like this and the doctors are like this. [P#2, Cigarette Smoker]

Yeah, his support did help me. His secretary helps me a lot. This is a good group, I’m glad I came to the [hospital]. [P#15, SLT user]

Mixed emotions.

Finally, in some instances, participants described experiencing both negative and positive emotions. Participants described frustration and sadness, but at the same time, emphasized the benefits of staying positive.

Discussion

Using the established and well researched CSM, the current study aimed to qualitatively describe the experiences of South Asian HNC survivors, history of SLT or cigarette use, as well as their thought processes and emotions as related to their cancer journey. CSM provides a framework for thoughtful and emotional processes that allow for a cancer survivor to reframe their identity, given a major change in their life course. The data were analyzed based on the recommended components of CSM, including five different cognitive components (identity, cause, time-course, controllability, and consequences) and emotional aspects.

Overall, the study revealed multiple key findings. First, in-tandem with the CSM, participants emphasized their experiences with receiving a HNC diagnosis, enduring treatment and related medical care, thoughts about consequences of cancer and treatment, strategies to cure the cancer or prevent recurrence, and emotional consequences of the cancer experience. Of particular importance, participants discussed family support as integral to their treatment and recovery. Participants discussed the support of spouse, adult children, and the fear of not being able to fulfill their responsibilities towards family members as a key driving force that motivated them to want to be cured. This finding is similar to another study conducted in India with HNC survivors that highlighted the significance of the Indian family as being an integral part of the treatment process (Jagannathan and Juvva 2016). Engaging in open and supportive communication with family members and strong family ties were also evident in the present study, and was further corroborated by interviewees reporting the presence of one or two family members with every patient interviewed for this study.

Second, using the CSM as a theoretical framework, the results pointed out that when individuals’ health is threatened, they develop a cognitive and emotional representation of the disease that causes them to get involved or not in behavior change and/or health monitoring programs. In the present study, South Asian HNC survivors discussed multiple strategies to control the health threat: strategies to cure or treat the cancer (including surgery and other available treatments), strategies to control the side effects of treatment in an attempt to resume their lives, and strategies for preventing cancer recurrence by engaging in tobacco use cessation or tobacco use reduction. Future research could examine CSM in combination with decision-making to find associations between survivors’ cognitive representations and the way in which South Asian HNC survivors choose to go down the path of SLT cessation or reduction.

Third, a cancer diagnosis is associated with different illness perceptions, as revealed by the results of the present study. For instance, in trying to search for a cause for their cancer diagnosis, some South Asian SLT users clearly acknowledgement that their tobacco use caused cancer, some expressed ambivalence if their tobacco use caused the cancer, and a few engaged in denial and deflection of the link between SLT use and HNC diagnosis. We know from research that generally, people tend to have optimistic biases about their personal susceptibility to health risks (Weinstein, 1987). Therefore, highlighting South Asian SLT users’ risk levels as well as encouraging fact-based dialogue with them in an empathic way may be beneficial, particularly if coming from a health professional.

Finally, the data also highlighted the varied emotional consequences of the cancer journey that participants experienced. While the negative emotions such as fear, sadness, and guilt for an individual confronting a cancer diagnosis may seem obvious, what was unique about the HNC survivors in the study was that they described how they engaged in a process of redefining or readjusting their emotions so that they stayed optimistic and hopeful for a good outcome and prognosis, and were grateful to the medical team and doctors for giving them a second life. Consistent with prior studies, this positivity and hope that allows cancer survivors to endure their cancer treatment and side effects exemplifies their resilient approach to continue living their lives and efforts to maintain quality of their lives (e.g., Schiavon et al 2017; Scioli et al. 2016). A recent study on coping and emotions of patients with HNC cancers after diagnosis conducted in India concluded that an in-depth understanding of the emotions - their root cause, coping strategies, and spiritual and cultural orientations of the cancer survivor - is essential to develop any effective intervention program in India (Jagannathan and Juvva 2016). However, there exists a need for more studies from South and Southeast Asia as most of the prior studies hail from East Asia. This was highlighted by a systematic review on biopsychosocial correlates of hope in Asian patients with cancer (Mahendran et al. 2016). Additional research on hope and optimism as influenced by cultural factors would facilitate a comprehensive understanding of how South Asians build, manage post-traumatic growth, and encourage this resiliency.

The Context of Tobacco Use in the South Asian Population

Consistent with prior quantitative studies, the qualitative findings confirmed that the majority of survivors were former or current tobacco users. A number of prior studies have described social acceptability and the initiation of tobacco use among young South Asians (e.g., Auluck et al. 2009; Banerjee et al. 2014a; Kakde, Bhopal, and Jones 2012; Merchant, Gallagher, and Scott 2016; Messina et al. 2013; Mukherjea et al. 2012). Research clearly indicates that among South Asian communities, tobacco use risk messaging is incongruent with many cultural beliefs about tobacco use. Users often believe SLT use provides physical health benefits. South Asian immigrants report using gutka and betel quid with tobacco as stimulants, for cosmetic purposes, and digestive benefits (Banerjee et al. 2014a; Mukherjea et al. 2012). Similarly, areca nut or areca nut is chewed for perceived health benefits such as mouth freshening, taste enhancement, and indigestion (Auluck et al. 2009). SLT use also appears to be a coping mechanism to address frustration, depression, anger, and boredom (Messina et al. 2013; Kakde, Bhopal, and Jones 2012). Areca nut is held in high social regard, and the use of areca nut is tied into tradition and religious ceremonies (Auluck et al. 2009). Dependence on SLT thus typically begins with initiation in social groups, and gradually transitions to individual use, demonstrating increasing addiction (Banerjee et al. 2014a).

While all the participants discussed potential causes of their HNC cancer, there were mixed responses, ranging from participant acknowledgement that their tobacco use caused the cancer to complete denial that tobacco use had any impact on cancer diagnosis to ambivalence where the participants were not sure if their tobacco use caused the cancer, but reported advising others to quit by quoting their own example. These mixed responses are likely reinforced by lack of knowledge as well as misperceptions about the dangers tobacco use poses to oral health. South Asian tobacco users are more likely to recognize that cigarette smoking is a risk factor for cancer than SLT consumption, demonstrating that health promotion messaging have had some desired effects, but more work needs to promote messages about the harmful effects of SLT use (Mukherjea, Modayil, and Tong 2018). Some research indicates that Indian SLT users report awareness of association between SLT and oral cancer, but not between SLT and poor oral health (Kakde et al. 2012). UK tobacco users, in contrast, are aware of the effect of SLT on dental health, but are less likely to recognize the implications of SLT use for oral cancer. Use of betel quid without tobacco, and particularly areca nut use is typically not perceived as a causal factor for cancer, although research has identified areca nut as a carcinogen that independently increases the risk of developing oral cancer (Merchant et al. 2000).

Focus groups conducted with South Asian immigrant SLT users indicate that even when there is an understanding of negative health effects of gutka or betel quid with tobacco, users justify their SLT use behavior by making rationalizations such as skepticism about the gutka/ betel quid-cancer with tobacco link, perceived invulnerability to gutka/ betel quid with tobacco-related harm, compensatory beliefs, faith-based rationalization, and acknowledgment of addiction (Banerjee et al. 2014b). Erroneous beliefs about the harms of tobacco have also reported in a sample (n=201) of South Asian youth in London (Merchant et al. 2016). Despite a high level of engagement in oral cancer risk behaviors, over half of young users were not aware that chewing betel quid or betel nut was associated with greater risk of incurring oral cancer (Merchant et al. 2016). Thus, SLT public health efforts for prevention and cessation seem to be a major public health need for the South Asian populations, both in their home countries and in their migrant countries.

Limitations of the Study

The findings of our study should be considered in the context of the limitations to our current work. The study analyzed cancer experience narratives only from South Asian HNC survivors. All the narratives (except one) were shared by South Asian male HNC survivors, and only one narrative was shared by a female HNC survivor, which may limit the generalizability of the study findings to other HNC survivors. Future research should explore the experiences of female HNC survivors as well, in order to identify commonalities and differences in their lived experiences. Additionally, we did not collect any disease-specific information (such as stage of disease, time since diagnosis, and treatments received) or participant demographic information (such as age, education, and profession). Future research could stratify the narratives by stage of cancer or current treatment status, which may lead to different themes and subthemes highlighted in HNC survivor narratives. A large majority of the participants were immigrant South Asians, treated in the United States, so the results are limited in scope and generalizability. Understanding key issues for different South Asian HNC survivors can be helpful in developing supportive models of care that are unique to the survivors’ culture and context and provide a more tailored approach to treating the patient. Lastly, our participants were recruited from HNC clinics affiliated with one comprehensive cancer center in the Northeast, US. As such, these findings may not be generalizable to other geographic areas within the US.

Implications of the Study

Our study makes several contributions to the literature and presents implications to inform both research and practice. First, this study describes an empirical way of eliciting HNC survivor experience (e.g., while waiting in the waiting room for their follow-up appointment or possibly over phone) to understand key patient experiences and concerns. Allowing an open-ended format to let the patients “tell their story” can allow the health care systems to focus on providing more optimal supportive care to patients and families. Second, this study has implications for public health researchers to harness the patient voice and the power of storytelling for developing campaigns about public awareness of SLT use, providing information and support to SLT users, and encouraging SLT quitting resources. For instance, as of February 7, 2019, the Center for Disease Control and Prevention’s (CDC) Tips from Former Smokers ® campaign launched in 2012 (and continued till 2018) that profiled real people living with serious long-term health effects from smoking and secondhand smoke exposure. Other efforts, particularly from India include a collaboration between the Government of India, World Lung Foundation and other stakeholders, to develop a 30-second documentary style public service announcement (PSA) that shows an oral cancer surgeon in a cancer hospital, who describes and presents the serious illnesses and disfigurement of his patients (particularly young adults), caused by cancers resulting from use of smokeless tobacco (Murukutla et al., 2012). Our study indicates that HNC cancer survivor experiences can be used to not only develop preventive health messages but to also help guide newly diagnosed HNC patients about where and how to seek treatment and other psychosocial support. Narrative messages are effective for reaching resistant audiences in health promotion research (Dal Cin, Zanna, and Fong 2004; Green and Brock 2000; Hinyard and Kreuter 2007; Kreuter et al. 2007). Meta-analyses demonstrate that narrative messages depicting events and consequences have advantages over informational messages that present reasons and arguments (Allen and Preiss 1997), because stories (a) overcome resistance to health-promoting advice, (b) facilitate information processing by capturing attention, enhancing understanding and aiding recall, and (c) are easily accessed and understood, particularly when literacy levels may be low. Personal narratives also especially effective in promoting desired health outcomes, particularly when the story-teller shares the recipients’ background and cultural experiences. Future directions could make use of the themes present in these narratives to determine the usefulness of various personal narratives in the context of tobacco cessation in South Asians.

Finally, the study underscores the importance of providing clear, personalized and culturally sensitive education regarding the risks of SLT use. For instance, dentists and other physicians caring for South Asian patients can inquire about SLT use and use that as opportunity to describe the risk for oral cancer, highlighting the harm on the patient as well as on the family. Prior research informs us that South Asian SLT users may have some knowledge of harmful health effects of tobacco use but given the heavy prevalence of SLT use in the South Asian community, and strong cultural ties with SLT use, users may find reasons to justify their behavior and continue SLT use (Banerjee et al., 2014b). Therefore, education around SLT cessation will need to develop strategies to challenge misinformation, particularly around cultural traditions in order to motivate quitting attempts. For instance, given that fulfillment of responsibilities towards one’s family was highlighted in the present study as a psychosocial consequence, education around harms of SLT use and HNC cancer risk for self as well as for the family may be used as motivational tools to encourage South Asian HNC survivors.

Conclusion

This study presents a qualitative study of South Asian HNC survivor narrative experiences. The results of the study provide a deeper understanding of participant experiences with receiving a HNC diagnosis, enduring treatment and related medical care, thoughts about consequences of cancer and treatment, strategies to cure the cancer or prevent recurrence, and emotional consequences of the cancer experience. Choosing the CSM as a useful tool in conceptualizing illness representations of South Asian HNC survivors is justified, as survivors undergo simultaneous cognitive and emotional processing of the threat posed by the disease and, at the same time, the CSM centers on the individual within a specific familial, social and cultural context. Our findings highlight that supporting patients with HNC requires a detailed understanding of the ways in which an individual makes sense of their own identity and manages their emotions, with a recognition that ambivalence and uncertainty is likely to pervade both the individual’s present and future. More longitudinal research is necessary, in order to develop and offer tailored tobacco cessation services to South Asian HNC survivors, guide psycho-social interventions, and help inform supportive models of care for them.