Skip Navigation LinksHome > July/August 2014 - Volume 37 - Issue 4 > The Experiences of Head and Neck Cancer Patients Requiring M...
Cancer Nursing:
doi: 10.1097/NCC.0b013e31829ded0e
Articles

The Experiences of Head and Neck Cancer Patients Requiring Major Surgery

Parker, Vicki PhD; Bellamy, Douglas MHSM; Rossiter, Rachel PhD; Graham, Vicki RN, MN candidate; Britton, Ben Doc. Psych; Bennett, Leearna MN; Giles, Michelle RN, B Bus, MIS

Free Access
Article Outline
Collapse Box

Author Information

Author Affiliations: School of Health, University of New England, Armidale, New South Wales, Australia (Dr Parker); Cancer Services, John Hunter Campus (Mr Bellamy); Royal Newcastle Centre (Ms Graham); Psychooncolgy Unit, Calvary Mater Newcastle (Dr Britton); Centre for Practice Opportunity and Development (Ms Giles), Hunter New England Health Services (Ms Bennett); and School of Nursing and Midwifery, Callaghgan Campus, University of Newcastle, Callaghan, New South Wales, Australia (Dr Rossiter).

The New South Wales Department of Health, Nursing, and Midwifery Office provided a $10 000 Innovation Scholarship to support this project.

The authors have no conflicts of interest to disclose.

Correspondence: Vicki Parker, PhD, School of Health, University of New England, Armidale, New South Wales, Australia 2351 ( vparker3@une.edu.au).

Accepted for publication May 24, 2013.

Collapse Box

Abstract

Background:

The prevalence of head and neck cancers is lower (3.5% of total cancers in Australia) than for a number of other cancers. Treatment for head and neck cancer is often drastic and debilitating and patient outcomes are poorer.

Objective:

This qualitative study explored the experiences of cancer patients who underwent surgery for head and neck cancer.

Methods:

In-depth face-to-face interviews were conducted with 12 patients 7 to 26 months after surgery. Interviews were thematically analyzed to produce a rich description of patients’ experiences from diagnosis through surgery and beyond.

Results:

Critical aspects of patients’ experiences are described through the following themes: only having half the story, shocks and aftershocks, living with the aftermath, and being supported. Participants identified difficulties arising from receiving insufficient, confusing, and often untimely information. The persistent and traumatic nature of what patients endure challenges their physical, mental, and emotional coping capacity and, in some cases, their motivation to live.

Conclusions:

There is a need to address gaps in support and education of patients and carers. Of particular concern is the problem related to information provision and comprehension. Critical examination of current practices, together with efforts toward coordinated care tailored to individual needs, is required, along with outreach services for patients in rural areas.

Implications for Practice:

The development and evaluation of targeted resources in a variety of forms such as DVD, Internet, and pamphlets are needed. Robust assessment strategies are required to inform supportive interventions matched to stages and significant events in patients’ journeys.

Back to Top | Article Outline

Background

The prevalence of head and neck cancers is lower (3.5% of total cancers in Australia) than for a number of other cancers. Treatment for head and neck cancer is often drastic and debilitating, and patient outcomes in terms of survival and quality of life are often poorer. Five-year survival for head and neck cancer remains low at 55.9%.1 Evidence points to the need for significant and broad ranging support for this group of patients who can often be overlooked in large-scale cancer support programs.2 This qualitative study explored the experiences of cancer patients who underwent head and neck surgery. The aim of the study was to identify and work toward overcoming gaps in supportive services.

This article reports the findings of the first phase of a 3-part Australian qualitative study. This first phase was designed to explore and understand the experiences of cancer patients undergoing head and neck surgery. The second and third phases will examine staff experiences and use these collective findings to develop a needs assessment process and implementation of an effective model of care.

Back to Top | Article Outline

Literature Review

An abundance of research has documented the experience of people who have undergone treatment for a wide range of different types of cancer.3–9 Several of these studies have described the experiences and needs of patients with head and neck cancer.2,10–13 However, the complex needs and profound suffering experienced by those who undergo surgery for head and neck cancer have received less attention.2,14 Many patients who develop head and neck cancer undergo surgery that results in profound consequences. Surgical interventions are often so extensive that they may affect 1 or more of the patient’s vital functions. This may result in compromised ability to eat, speak, swallow, breath, and see, depending on the nature and site of the tumor and the treatment required.15,16 The severity of long-term sequelae for this group of patients can range from minimal to profound ongoing suffering.17 Physical complications experienced after treatment (surgery, chemotherapy, radiotherapy) may include severe mucositis and dysphagia, loss of taste, thyroid dysfunction, sensori-neural hearing loss, pharyngeal or esophageal stenosis, and myelitis.15 Concurrently, patients may experience other anatomical and functional defects such as permanent loss of speech.

Ziegler et al18 identified ongoing functional difficulties, chronic pain, psychological effects, and visible changes in facial appearance as contributing to the ongoing suffering experienced by survivors of surgery for head and neck cancer. The emphasis on rapid surgical intervention to improve survival may contribute to limited information giving and reduce time for informed decision making. In addition, the availability, content, and quality of written information specific to the individual needs of patients with head and neck cancer have been repeatedly identified as areas requiring attention.19–21

In many cases, the complexity of the physical and functional impairments can lead to high levels of anxiety, impacting negatively on self-image, self-efficacy,16 social isolation, and depression.22 Holland and Weiss4 recommend that psychosocial aspects should be integrated into routine cancer care for these patients throughout their illness trajectory. Others highlight the importance of participation in long-term supportive care programs,15 with the complexity of care needed seen as necessitating careful attention to ensure continuity of care.23 Social supports are also seen as an important factor in alleviating emotional distress and social dysfunction when disease and treatment results in functional and visible changes.22

The complex needs of patients who require surgery for head and neck cancer demand a high level of knowledge and skills from clinicians. Effective collaboration between healthcare services and professions is imperative to ensure that these complex needs are met. A range of generic programs have already been developed to assist clinicians to provide effective psychosocial care for people with cancer.4,24 Although the ongoing need for psychosocial support has been documented and tools have been developed to assist clinicians, this continues to be an area of difficulty.16,23,22 Communication difficulties on the part of clinicians have been identified as contributing to the difficulties that patients experience.8,25 Kelly and Turner26(p592) suggest that additional barriers are encountered by clinicians confronted by “suffering, debilitation and death, the sense of hopelessness and futility, or frustration and anger about the limitations of treatment.”

There is general consensus within the literature regarding the need for improved services for this group of patients. Effective care is contingent on sound understanding of the complex issues that affect patients and their families.

This study aimed to explore the experiences of patients who had undergone surgery for head and neck cancer and to provide a collaborative platform on which to create opportunities to enhance support services for these patients postoperatively, both in hospital and after discharge.

Back to Top | Article Outline

Method

This study was planned and conducted in collaboration with nursing and allied health clinicians, academic consultants, and 3 patient advisors. The study design was a qualitative descriptive study27 using in-depth interviews with patients drawn from the population of patients who had undergone head and neck surgery because of cancer in the last 2½ years. The study was conducted in a tertiary referral center that provides service to a wide distribution of patients across urban metropolitan and rural remote areas of New South Wales.

Ethics approval was obtained from the Hunter New England Human Research Ethics Committee. The researchers ensured that no participant was left distressed and unsupported at the termination of the interview and that counseling was available if participants became distressed. No one made a request for counseling. Debriefing sessions were offered to interviewers who may have been distressed by hearing patient’s stories. One interviewer was distressed when she interviewed a participant who was now in a palliative stage of care whose experience had been traumatic and who appeared to have little support. Debriefing allowed discussion about what was said and identification of processes that could be put in place to help the participant. A referral for the participant was made to community support. Data collected were deidentified to ensure anonymity and confidentiality. In reporting the study results, pseudonyms were allocated to each participant.

Back to Top | Article Outline
Data Collection

In-depth face-to-face interviews were conducted with 12 participants who were 3 to 30 months postsurgery. Interviews were conducted by 3 members of the research team who were experienced researchers (2 nurses and a social worker) and a student researcher. Most participants chose to be interviewed in their own home. Interviews were digitally recorded for transcription and analysis. Some participants had speech difficulties, so field notes were recorded to support and inform the transcription process to ensure clarity of the data. Participants were asked to share their experiences from diagnosis up to and after surgery. Prompt questions were used to encourage richer description and to draw attention to important aspects of the journey, as identified by consumer representatives on the research advisory team.

Back to Top | Article Outline
Participants

Participants were purposively sought from the population of patients admitted to the surgical ward for head and neck cancer surgery between 2008 and 2010. The 3-year timeframe was chosen as there are only small numbers of patients annually (mean n = 35) who undergo head and neck surgery. Invitations were sent to 20 patients randomly selected from 105 eligible patients. The plan was to send invitations in batches of 20 until we received enough responses. We chose this method so that we would not receive responses from more people than we were able to include in the study. This limited the amount of people who needed to be told they were not required to participate.

Fifteen people agreed to participate. Three people who responded were not subsequently interviewed because of achievement of saturation and a limited time frame. Those interviewed came from across metropolitan (n = 8) and rural (n = 4) areas (10 men and 2 women). Participants had undergone a range of surgical procedures, including removal of malignant neoplasms of the tongue, ear, eye, jaw, and maxillary sinus with facial lymph node involvement and dissection. The time from initial surgical intervention to interview ranged from 7 to 26 months. Nine participants had been working presurgery. Of these, 6 had returned to work at the time of interview. One participant died 3 weeks after giving her interview. The pathway of care for this patient group requires that they attend multidisciplinary clinics and services across 2 sites, with surgery provided at 1 large tertiary referral hospital and all other cancer treatments provided at the other major referral center. None of the participants attended a support group and rural patients were not supported by outreach services at the time of the study. During the course of the study, a care coordinator position was established (Table).

Table
Table
Image Tools
Back to Top | Article Outline
Data Analysis

Transcript data were coded, categorized, and then themed using an inductive iterative process of reading, reflecting, and writing. Themes were then expanded and populated from the patients’ stories to provide “thick” description of patients’ experiences from diagnosis through surgery and beyond. Analysis revealed and explored commonalities, differences, patterns, and absences in the data that formed the fabric of the interpretive description.27

Back to Top | Article Outline
Rigor and Trustworthiness

After agreeing on the analysis process, data were analyzed by individual researchers, who then came together to test and verify themes based on grounding and strength in and across transcripts. Transcripts and themes were confirmed through member checking. Themes were seen to display verisimilitude in that they resonated with the experience of client advisors who were invited members of the research advisory group.28

Back to Top | Article Outline

Results

The experience of being diagnosed with cancer of the head and neck and subsequently undergoing surgery, as described by participants in this study, is emotionally and physically painful and difficult. Participants in this study often felt overwhelmed by, and under prepared for, what they went through. Four pervasive, interconnected, and overlapping themes emerged from the data analysis: having only half the story, shocks and aftershocks, living with the aftermath, and being supported.

Back to Top | Article Outline
Only Half the Story

Participants’ stories indicated that a persistent and central concern for all was the difficulty associated with not having enough information about what would happen to them. Although participants received varying degrees of information about the nature of their condition and the events that would unfold in the ensuing weeks and months after their diagnosis, most felt that the information they received was inadequate. In particular, the information they were given by their physician and other health professionals failed both to signal what it would be like for them and to prepare them for what was to come. Much of the information they received was generic, discussing general aspects of care for someone undergoing treatment for head and neck cancer rather than for their specific type of cancer and the treatment they would undergo. As a result, they felt frightened, alone, and as though no one had regarded their specific circumstances or considered their individual needs. As 1 participant, Peter (pseudonym), explained,

I was left in limbo because I didn’t know what I was dealing with, when I tried to get some more information, the specialist wouldn’t return my calls and just left me out in limbo, which was pretty scary in itself.

Being given information that was generic in nature and in written form not only failed to allow participants to ask questions but also left them feeling ignored. Peter highlighted his need to talk to a person who could hear and respond to his concerns:

I would have rather had a one-on-one; you can’t ask a piece of paper questions, you can ask a person though.

Often, surgery occurred shortly after being diagnosed, which meant that participants had no opportunity or time to process information or to clarify issues and concerns in a second presurgery consultation.

If there had been time to have another visit with K…for him to tell me exactly what the situation was, it might have been better. I might not have worried and made myself agitated about it. (Elizabeth)

Often, the patients just did not know what questions to ask.

I could have asked more questions, and people said to me, “do you have any questions?” but I didn’t know what questions to really ask anyway, and how do you know the right questions to ask. (Elizabeth)

In some instances, the timing of information delivery was inappropriate either because there was insufficient time or because participants were not ready or able to process information. In some cases, the medical language used by health professionals was poorly understood.

They went on and on, a lot of it I couldn’t understand because it was the inner ear and outer ear and whatever you call it. (Carole)

Whatever the circumstance, the consequences for participants were profound, for example, waking to find that you are unable to talk or discovering that you can no longer eat. Not being told that these things would occur meant being unsure of what would happen next, taking away participants’ sense of security and control.

Once I had cancer, I realized I can’t talk, I can’t eat and there were a lot of things that hadn’t been explained to me first up what may happen, what could happen, how long it would be until my taste came back, so I feel I had none of that. People say “wait until after your therapy.” Up in my head, I don’t know what’s happening or what’s going to happen. (George)

Some stories revealed that participants had received little or no information regarding the potential impact of the possibly major and disfiguring surgery that was offered as the only option. No space was given in which to discuss the outcome for the person should he/she choose not to undergo the treatment offered or to examine alternative surgical options. This omission of information resulted in participants expressing a sense of betrayal when they found themselves in situations of extreme pain and suffering. For 2 participants, the suffering was such that they spoke of how different their decisions would have been if they had known how difficult their life would become. Dave, for example, said,

After the doctors said what they are about to do or what should be done, and I accepted what they said and I wished I hadn’t have actually in the first place. If I had known where I was going to be today, I really wished that I hadn’t done any of the treatment and I wouldn’t be here now and I wouldn’t have gone through what I’ve gone through. And that’s the bottom line. I know it’s pretty heavy duty but! [silence]

Carole, now confronting death, spoke of discussing this with her treating physician.

I only learnt what I learnt through the computer…. I said to (treating doctor) one day, if he told me I would be an alien, I wouldn’t have had the surgery. He said, “What sort of a response is that, you wouldn’t have had it?” You bet I wouldn’t have if I knew I was going to be like this. (Carole)

Back to Top | Article Outline
Shock and Aftershocks

For some participants, being diagnosed with cancer confirmed their anxious suspicions. For others, a small lesion on their tongue or mouth seemed relatively innocuous until a routine visit to the dentist or general practitioner aroused the concerns of a health professional. The initial impact of diagnosis was a shock to all even though they may have suspected that was what they may be told. Being told made cancer real and was a sudden and frightening full stop to life as they knew it. George describes his experience,

I know a lot of people would say “why me, why me, it can’t happen to me,” you know. I knew what it was, so I knew I had cancer so it really frightened me for a long time and then I thought, “you know what am I going to do, am I going to die.” What have I got to put in place? Am I going to live? I thought of all that rubbish. Yeah, frightened more than anything. Terrified and I had a couple of panic attacks in amongst it. I would hyperventilate and couldn’t make sense or reason you know what I mean. Nothing sort of made sense and all I wanted to do was walk and walk and walk for miles.

Although being diagnosed was a shock regardless of whether it was expected or not, not having a diagnosis was also difficult in that it prevented these participants from knowing what they had to cope with and hence left a huge space for fear and speculation in their minds.

I can remember the psychologist came and said, “how are you coping” and I said, “I am not coping very well because no one has told me I have got cancer.” (Elizabeth)

Being diagnosed was the first in a series of shocks that would continue to threaten and test their physical, mental, and emotional resilience. For many, the capacity to cope with what they would encounter was further challenged by the speed at which events occurred. No sooner were they diagnosed than they were in hospital for surgery. The urgency associated with the need for surgery left little time for preparing or coming to terms with what was about to unfold. None of the participants were ready.

One participant relates her experience of attending a multidisciplinary clinic at the referral center and the pace of discussion and decisions,

We come down [from their country home] thinking that it was just, like you go and see the doctor up home and then when she said, “I’m going to put you in this room down here, there’ll be various doctors coming in, you’ll be here all afternoon,” which we didn’t know anything about. So then it was a team of people one after the other, and by the time we got through the end of it, my head was in a whirl you know. And at one stage, they were talking about doing surgery, then they were talking about not doing it and just doing radiation and then the surgeon came back in and I burst into tears and he just put his arm around me and said “it will be alright,” then he said, “your surgery will be Monday.” (Carole)

Surgery, rather than remedying the situation or making it easier for participants, in many cases was simply the beginning of a cascading series of events and treatments. “It was a worrying time after the surgery.”

You know like what is around the corner and so forth. Then just my facial features were all out of shape and so forth. (Peter)

Very rarely was surgery used as a single intervention. Most participants also had to endure chemotherapy and radiotherapy and, often, recurrent surgical procedures. It seemed for them that there was no opportunity to feel safe or at least have a rest and come to terms with their situation. The next shock was just around the corner.

I have been fighting that hard, and then turn around half way through treatment and say that it is their opinion that it will come back either in your lungs or your stomach. It was like it just took the wind straight out of my sails. (Peter)

For George, who required radiotherapy after his surgery, being claustrophobic precipitated severe panic attacks during the radiotherapy sessions. He said,

I’m absolutely terrified of confined spaces, and they said, “oh it’s only a couple of minutes” and 20 minutes later, well in the meantime I’ve almost had another one of these panic attacks in there and sweat pouring out of me and felt as though I couldn’t breathe and I was just a mess. (George)

For some participants, certain events or realizations triggered a sudden and destabilizing sense of loss of control over their lives. For others, such as Elizabeth, the feeling of helplessness developed over time as they were less able to participate in their own care and take an active role in decision making

You just have to rely on the experts and so that was probably the worst aspect of it.

Participants’ loss of control affected their ability to control, plan, and direct their lives. This loss was often contributed to and compounded by distressing consequences of surgery, such as constant dribbling:

You’re hiding that side of your face all the time because it embarrasses you. There’s dribble. You know, there’s nothing worse. (George)

Back to Top | Article Outline
Living With the Aftermath

As a consequence of peoples’ responses to their changed appearance, participants also reported feeling different and seeing the world differently. The fundamental sense of themselves and their comfortable belonging in the world was shaken by looking and feeling different and the response that this evoked both within themselves and from others. As Peter described it,

It was like everything had fallen apart, your whole body because your senses you are so normally used to, like your touch, your smell, everything like that is foreign to me…it wasn’t mine. There are so many different side effects and different things…it has completely changed my life.

Ongoing assault on participants’ physical being and personhood occurred as they journeyed through the experience. Multiple procedures and adjuvant treatments such as chemotherapy and radiotherapy led to a sense of repeated injury.

Radiation just burns the crap out of you. I was actually burnt from the bottom of my nose down to the top of my chest. It was like the worst sunburn you could probably imagine. And that was inside and out, so you imagine your throat being sunburnt. No liquids, no nothing, you couldn’t do anything. I had a PEG [percutaneous endoscopic gastrostomy] feed put into my stomach so I could eat because they knew the damage that had been done. (Dave)

Every aspect of a person’s being is affected, with participants describing physical, emotional, and psychological consequences. Physical consequences included persistent disability; difficulty eating, hearing, and being understood; ongoing fatigue; and continuing pain.

The taste of food disappeared. There was no taste, so you just didn’t want to eat, and luckily, I’d had the PEG by then, otherwise, I wouldn’t be here today cause I wouldn’t have eaten. It’s as simple as that. Your mind tells you, “don’t swallow that because you don’t even know what it is because of the taste.” Well your mind tells you “don’t swallow it”…. And so just to try and swallow something, although I could swallow, I couldn’t swallow the food because my mind kept telling me “don’t because you don’t know what it is.” The brain couldn’t register off the taste buds that it was good. (Bernard)

Well it’s knocked the rest of my body around. I’m about 18 kg down on my weight. I’ve just got no energy now. Bits of me that never hurt, I’ve got sciatica now. It’s only because of weight loss. I just haven’t got the energy that I used to have. (Martin)

Participants described struggles with depression and “self-pity,” fear of dying, as well as a sense of loss of control. For a number of participants, their illness has had a devastating impact on their financial security, with some no longer able to work and, as a result, needing to access sickness benefits and disability support.

I’m now on a pension, but we manage. It just means no luxuries and I don’t go out to restaurants anymore and saving on food. (Martin)

Activities that had previously brought richness to life were no longer accessible; for example, socializing with friends and family becomes incredibly challenging when it is difficult to eat easily or to be understood when speaking.

My wine and stuff I just can’t drink because it’s like putting battery acid in my mouth. I probably do miss that. I do miss a wine with a meal. Just like I used to eat to enjoy not because it just kept me alive you know. (Martin)

These changes meant that participants were challenged to think about what life meant for them. They were no longer the same person but someone who had survived cancer and surgery, someone who was now uncertain of his/her future and his/her survival. A number of participants spoke of how their values had changed, in particular, the value they place upon those close to them and recognition of how much family support enables them to endure the assault of devastating illness and surgery.

Back to Top | Article Outline
Being Supported

This theme describes the critical elements that participants found supportive and in fact lifesaving in surviving the profound physical and psychological impacts of their diagnosis and surgery and its aftermath. The tension and emotional anguish associated with recovery are lessened by the presence and support of others. Participants highlighted that they could not do it alone. In this way, being supported was profoundly important for participants because it helped them to adjust to their new and difficult situation. However, they also felt they had become a burden, particularly on their families. Second, support connected them to their past and provided a sense of biographical continuity when changes to their appearance and disability challenged their sense of self.

Being supported enabled them to negotiate the challenges that emerged, such as being diagnosed with cancer, disruption to their financial security, and dealing with pain and uncertainty. Michael explains the importance of being able to rely on his family at this time.

So I am in this sort of state of shock and then I left and then I went out and I rang my wife and I sort of broke down then. And this is where Mary was marvelous. She said, “don’t worry about it, get yourself home I will ring mum and dad they will have the money, they will fix everything up, don’t you worry about it.” All the time I was sick if it wasn’t for Mary, honestly she took on an extra job and everything like that, (pause) amazing.

Being supported by family and friends helped participants to deal with their difficult situation, but it also placed them in a position where they felt they were a burden, not only in terms of their need for physical and emotional support but also because of the financial cost resulting from them not being able to work.

I felt like a burden on her, like going through the radiation and the chemo I felt like I was useless and I felt like I was a real drag and I was lucky that I had enough sick leave to cover the time I had off, it was like about 8 months or something. It has been hard, financially it has been hard. (Peter)

Non–family members who had undergone similar procedures were also helpful in supporting participants. Knowing that others have survived and are back on track with their lives was encouraging to participants. Whereas many of the participants reported relying heavily on their family and friends, others had a different perspective. Arnold, for example, said,

I wouldn’t have looked for support because that is not my style, I can handle it, internalize it and think about it and I am comfortable with it.

For those who took this view, their ability to feel comfortable was supported by seeking and gathering information that enabled them to feel as if they were in control of their situation.

Unfortunately, there were many reports of difficulties with social security agencies whereby participants were made to feel guilty, unworthy, and demeaned by unrealistic expectations that they should be able to work and unreasonable wait times for their request for support to be considered. The wide-ranging impact of participants’ circumstances and the often protracted or recurring periods of disruption to their lives challenged the capacity of the system to offer them appropriate support. This was particularly so for those in rural areas at a distance from cancer services.

Back to Top | Article Outline

Discussion

This research highlights the importance of accurate, comprehensible, and timely information for people before and after surgery for head and neck cancer. Well-informed patients have been reported to experience lower levels of anxiety and depression and deal more effectively with the challenges after surgery.29 However, patient’s needs and wishes are complex and sometimes ambiguous.12 As highlighted by Newell et al,30 diagnosis and information about surgery are often given at the same time and different personalities respond in different ways. This study reinforces the finding of other studies that have identified the need for individualized information available in a variety of formats.20,31 It is essential to work collaboratively with patients and advocacy groups to develop and evaluate appropriate resources and information-sharing methods. Information sharing needs to be embedded in the care pathway at points where it has most meaning and application for patients and families, enabling them to both participate more effectively in their care and be supported in their information seeking. The development of DVD and Internet-based resources, together with the support of expert clinicians and agencies, is required to ensure that patients and families receive information that is not only pertinent to them but also can be revisited according to their need and interest. Research is required to better understand patients’ and families’ information usage preferences and patterns and to develop a range of options.

The findings also point to the need for integrated and ongoing monitoring, care, and assistance with managing the physical, psychosocial, emotional, and spiritual challenges associated with head and neck cancer and its treatment. Improving communication and information sharing across acute, primary, and community sectors through robust networks and processes is essential to ensure that patients no longer slip through gaps in service delivery.

The psychological distress reported in this study is consistent with that reported elsewhere.25,26 A process is required that identifies those who are at risk of severe distress after treatment and those who require assistance with their ongoing psychological needs. Robust outreach models are required for those who live in rural and remote areas.

The study also raises the ethical issue of how open clinicians should be in providing information regarding prognosis. Dilemmas that arise relate to realistic representations of prognosis with surgical and adjuvant treatments while tempering these against the fear that discussing prognosis will result in a loss of hope. Tailored information will help to overcome the mismatch between unrealistic expectations and actual experience.31 Information and education packages developed in collaboration with patients will open up space for understanding of the experience from a patient’s perspective and, hence, conversations about choice. The need for emotional support and alleviation of fear and anxiety requires of health professionals an enhanced capacity to participate in difficult conversations and to respond effectively to patients confronted with the requirement for surgery that will result in deformity and dysfunction.

There is a need for multifaceted support strategies for patients and their families. Such support requires the bringing together of appropriate health- and non-health-related agencies in a sustained program of support over time. The possible long-term nature of the hardship family’s encounter makes them particularly vulnerable to financial hardship and disruption of social supports.

Within the transcripts, there is a notable absence of conversation that relates to very personal aspects of people’s lives such as issues related to intimacy. Reasons for this absence need to be explored and further studies need to be done to investigate if and how this is in indeed an important issue for this group of patients.

Although this article does not include participants’ descriptions of the difficulties they attributed to disjointed and uncoordinated services, the findings do provide further support for Kelly and Turner’s26 focus on the critical role that the structure of the health service delivery plays in the provision of care for patients with complex needs.

Back to Top | Article Outline
Limitations of the Study

The predominantly male study sample is similar to other studies on head and neck cancer populations conducted worldwide.1,2,13,19 However, it may lead to a gender bias in the study findings. A study of women’s experience alone is necessary to understand if this is the case. We have been acutely aware of the potential for this bias when analyzing the data.

Back to Top | Article Outline

Conclusion

This study indicates that the experiences of patients who have undergone assessment and surgical management of a head and neck malignancy and consequent surgery are diverse and complex. Their experiences are characterized by constant challenges, painful and debilitating treatments, and persistent uncertainty. Despite well-documented evidence regarding the specific needs of people who have undergone head and neck surgery, the findings from this study suggest that this has resulted in minimal impact upon practice. Our findings point to the urgent need for the development and assessment of information-sharing strategies for this group of patients. Without adequate personalized information, they will continue to feel disregarded in decision making about treatment options and continue to feel isolated and unsupported. It is clear that the nature of information giving needs to be informed by the preferences of patients and families and matched to significant events that occur across the illness trajectory, for example, at diagnosis; before surgery; after surgery, chemotherapy, and radiotherapy; and during palliation. With more detailed information on likely outcomes, patients may choose to not go ahead with surgery or radiotherapy. This scenario needs to be examined by clinicians and protocols put in place to ensure improved patient participation in the decision-making process. Satisfactorily addressing the issues identified in this study will require critical examination and revision of services and the development and delivery of targeted educational interventions. The importance of assisting clinicians to manage the emotional dimensions of caring for patients undergoing surgery for head and neck cancers has also been highlighted.

Back to Top | Article Outline

ACKNOWLEDGMENTS

Thank you to the study participants and their families who so freely spoke of their experiences despite the “rawness” and “distress” associated with their experience. Special thanks to the 3 patient advisors (Sharon, Joan, and Russell) for sharing their personal perspectives with the research team. Thank you also to Professor G. Hoffman and Dr R Eisenberg for their review and constructive feedback.

Back to Top | Article Outline

References

1. Tracey E, Barraclough H, Chen W, et al. Survival from cancer in NSW: 1980 to 2003. In: New South Wales Department of Health. , ed. Sydney, Australia: Cancer Institute NSW; 2007; 172

2. Chen S-C, Liao C-T, Lin C-C, Chang JT-C, Lai Y-H. Distress and care needs in newly diagnosed oral cavity cancer patients receiving surgery. Oral Oncol. 2009; 45: 815–820.

3. Hodgkinson K, Butow P, Hunt GE, et al. The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: the CaSUN (Cancer Survivors’ Unmet Needs measure). Psychooncology. 2007; 16: 796–804.

4. Holland J, Weiss T. The new standard of quality cancer care: integrating the psychosocial aspects in routine cancer from diagnosis through survivorship. Cancer J. 2008; 14: 425–428.

5. Kuang-Yi W, Gustafson DH. Needs assessment for cancer patients and their families. Health Qual Life Outcomes. 2004; 2: 11–12.

6. Surbone A, Peccatori F. Unmet needs of cancer survivors: supportive care’s new challenge. Support Care Cancer. 2006; 14: 397–399.

7. Thewes B, Butow P, Girgis A, Pendlebury S. Assessment of unmet needs among survivors of breast cancer. J Psychosoc Oncol. 2004; 22: 51–73.

8. Thorne SE, Kuo M, Armstrong EA, McPherson G, Harris SR, Hislop TG. ‘Being known’: patients’ perspectives of the dynamics of human connection in cancer care. Psychooncology. 2005; 14: 887–898.

9. Hwang S, Park B. The perceived care needs of breast cancer patients in Korea. Yonsei Med J. 2006; 47: 524–533.

10. Bjorklund M, Sarvimaki A, Berg A. Living with head and neck cancer: a profile of captivity. Nurs Healthc Chron Illn. 2010; 2: 22–31.

11. Rodriguez CS, Blischak DM. Communication needs of nonspeaking hospitalized postoperative patients with head and neck cancer. Appl Nurs Res. 2010; 23: 110–115.

12. Moore R, Chamberlain R, Khuri F. A qualitative study of head and neck cancer. Support Care Cancer. 2004; 12: 338–346.

13. Semple C, Dunwoody L, Kernohan W, McCaughan E, Sullivan K. Changes and challenges to patients’ lifestyle patterns following treatment for head and neck cancer. J Adv Nurs. 2008; 63:(1): 85–93.

14. Birchall M, Richardson A, Lee L, Morton P. Eliciting views of patients with head and neck cancer and carers on professionally derived standards for care/commentary: patients’ involvement in their treatment matters. Br Med J. 2002; 324: 516–520.

15. Argiris A, Karamouzis MV, Raben D, Ferris RL. Head and neck cancer. Lancet. 2008; 371: 1695–1709.

16. Eades M, Martin C, Bhargava R. Rehabilitation: long-term physical and functional changes following treatment. Semin Oncol Nurs. 2009; 25: 222–230.

17. Goldstein DP, Hynds Karnell L, Christensen AJ, Funk GF. Health-related quality of life profiles based on survivorship status for head and neck cancer patients. Head Neck. 2007; 29: 221–229.

18. Ziegler L, Newell R, Stafford N, Lewin R. A literature review of head and neck cancer patients information needs, experiences and views regarding decision-making. Eur J Cancer Care. 2004; 13: 119–126.

19. 19. Dall’Armi L, Forstner D, Simpson G, Simpson T. Developing information resources for people with head and neck cancer. In: Cancer Institute NSW, ed. A Survey of the Information Needs of People With Head & Neck Cancer and Their Relatives Resident in the South West of Sydney. Sydney, NSW, Australia: NSW Oncology Group (NSWOG) Head and Neck; 2009. http://www.cancerinstitute.org.au/media/23098/2009-08_developing_resoures_for-people_with_head_and_neck_cancer.pdf

http://www.cancerinstitute.org.au/media/23098/2009-08_developing_resoures_for-people_with_head_and_neck_cancer.pdf. Accessed August 18, 2013.


20. Dall’Armi L, Simpson GK, Forstner D, Simpson T, Kwa B. A survey of the information needs of people with head and neck cancer and their relatives resident in the south west of Sydney. In: Cancer Institute NSW, ed. Developing Resources for People With Head and Neck Cancer. Alexandria, NSW, Australia: NSW Oncology Group (NSWOG) Head and Neck; 2008 .

21. Semple CJ, McGowan B. Need for appropriate written information for patients, with particular reference to head and neck cancer. J Clin Nurs. 2002; 11: 585–593.

22. Penner JL. Psychosocial care of patients with head and neck cancer. Semin Oncol Nurs. 2009; 25: 231–241.

23. Fillion L, de Serres M, Cook S, Goupil RL, Bairati I, Doll R. Professional patient navigation in head and neck cancer. Semin Oncol Nurs. 2009; 25: 212–221.

24. National Breast Cancer Centre, National Cancer Control Initiative. Clinical Practice Guidelines for the Psychosocial Care of Adults With Cancer. Camperdown, SW, Australia: National Breast Cancer Centre; 2003 .

25. Thorne SE, Bultz BD, Baile WF. Is there a cost to poor communication in cancer care?: a critical review of the literature. Psychooncology. 2005; 14: 875–884.

26. Kelly BJ, Turner J. Depression in advanced physical illness: diagnostic and treatment issues. Med J Aust. 2009; 190: S90–S93.

27. Thorne S, Kirkman S, O’Flynn-Magee K. The analytic challenge in interpretive description. Int J Qual Methods. 2004; 3: 1–11.

28. Tracy SJ. Qualitative quality: eight ‘big tent’ criteria for excellent qualitative research. Qual Inq. 2010; 16: 837–851.

29. Llewellyn C, Horne R, McGurk M, Weinman J. Development and preliminary validation of a new measure to assess satisfaction with information among head and neck cancer patients: the Satisfaction With Cancer Information Profile. Head Neck. 2006; 28:(6): 540–548.

doi: 10.1002/hed.20450.


30. Newell R, Zeigler L, Stafford N, Lewin R. The information needs of head and neck cancer patients prior to surgery. Ann R Coll Surgeons Engl. 2004; 86: 407–410.

doi: 10.1308/147870804722


31. Llewellyn C, McGurk M, Weinman J. Striking the balance: a qualitative pilot study examining the role of information on the development of expectations in patients treated for head and neck cancer. Psychol Health Med. 2005; 10:(2): 180–193.

Keywords:

Cancer; Head and neck surgery; Patient experience; Qualitative research

Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins

Login

Search for Similar Articles
You may search for similar articles that contain these same keywords or you may modify the keyword list to augment your search.