QUALITY OF LIFE AFTER TOTAL GLOSSO-LARYNGECTOMY Leanie Engelbrecht and Anita van der Merwe Q uality o f L ife after T otal G losso-L aryngectom y 29 Department o f Communication Pathology, University o f Pretoria ASTRACT The article explores the quality o f life o f two participants who had undergone total glosso-laryngectomy as treatment fo r advanced tongue base cancer. Semi-structured interviews were conducted and questions relating to the effects o f treatment on physical, functional, social and psychological well-being were asked. Thematic analysis o f the interviews was done to determine recurring themes in the answers o f the participants. The findings showed that total glosso-laryngectomy has a significant impact on quality o f life. A good quality o f life can be maintained in a patient who has an extensive support structure and can achieve intelligible oral communication. Pre-operative counselling by a multi-disciplinary team is important fo r a person to make an informed decision regarding surgery fo r head and neck cancer. Shared decision making needs to be addressed in the South African service delivery context. Key Words: Quality of life, physical well-being, functional well-being, social well-being, emotional/psychological well-being, glossectomy, glosso-laryngectomy INTRODUCTION In 1947 the World Health Organisation's definition o f health changed from "absence of disease and infirmity" to "a state of physical, mental and social well-being" (World Health Organi­ sation, 1997). This definition emphasises the value of preserv­ ing physical, social and mental health. Quality of life for head and neck cancer patients has become a much debated topic and a crucial area of research in the last two decades (Major, Bumpous, Flynn & Schill, 2001; Petruson, Silander & Hammerlid, 2003). The reason for this interest in quality o f life o f a person who has head and neck cancer is that treatment of this type of cancer may be curative, but may also have a dra­ matic effect on many aspects o f life for such a person. The per­ son who receives the diagnosis o f head and neck cancer has to make an informed decision regarding treatment. The speech- language pathologist will in many instances be an important resource for information regarding the consequences of treat­ ment and therefore needs to be informed o f the possible effect of surgery for head and neck cancer on quality o f life. Surgical treatment forj advanced head and neck cancer often entails total glossectomy and total glosso-laryngectomy (Harrison, Ferlito, Shaka, Bradley, Genden & Rinaldo, 2003). T1 tumours (2cm or less in greatest dimension) and T2 tumours (more than 2cm but not more than 4cm in greatest dimension) can be treated with a single modality, for example, surgery or radiotherapy. T3 tumours (more than 4cm in greatest dimen­ sion) and T4 tumours (extensive tumour infiltrating adjacent structures), however, may require combined treatment such as surgery followed by radiotherapy or chemoradiation (Shah, 1996; Harrison et al., 2003). When surgery is the treatment modality of choice, total glossectomy may be performed. A laryngectomy may also be performed concomitant with total glossectomy to prevent aspiration o f liquids and food that may follow after total glossectomy (Davidson, Brown & Gullane, 1993). In extensive tumours where the valleculae and/or larynx are infiltrated, total laryngectomy has to be performed together D epartm ent o f C om m unication P athology U niversity o f P retoria . P retoria 0002 E-m ail: leanie.2305@ vodam ail.co.za South A frica o r anita.vanderm erw e@ up.ac.za with the glossectomy to obtain clear surgical margins. This operation is known as a total glosso-laryngectomy. Although surgery for base of the tongue cancer is often life saving, this type of surgery may lead to various problems post-operatively, thereby affecting the patient's quality o f life. Despite advanced reconstruction techniques and methods of rehabilitation, total glossectomy patients are still faced with deficits in eating, speaking, breathing, shoulder movement and also deformed physical appearance (Ruhl, Gleich & Gluckman, 1997; Vickery, Latchford, Hewison, Bellew & Feber, 2003). If a total laryngectomy is performed too, the person will not only lose the tongue, but also the ability to produce voice. Total glossectomy and total glosso-laryngectomy may impact on physical well-being, social well-being, psychological well­ being and functional status (Chen, Frankowski, Bishop-Leone, Hebert, Leyk, Lewin & Goepfert, 2001; Morton, 2003). The term health related quality o f life (HRQoL) is fre­ quently used to focus on the clinical effects o f a disease and its treatment. This concept highlights those aspects of life that are affected by healthcare interventions (Fayers & Machin, 2000; Ferlito, Rogers, Shaha, Bradley & Rinaldo, 2003). The exact meaning of the term HRQoL has not been adequately defined and according to Fayers and Machin (2000) the aspects that the term encompasses may vary from study to study. The term quality o f life refers to a broader scope o f aspects than pure clinical effects as encompassed in HRQoL. Quality o f life has been described as a broad concept that applies to a person’s general well-being and life-satisfaction (Walter & Shannon, 1990). According to Morton (2003) quality o f life relates to a range o f physical and psychological parameters that describe an individual's ability to function and derive satisfaction from life. To make sense of the many aspects o f quality o f life, some main components o f quality o f life has been suggested. According to Morton (2003) the components o f quality o f life can be divided into four domains, namely physical func­ tioning, social interaction, psychological state and somatic sen­ sation. Fayers and Machin (2000) state that general health, physical functioning, physical symptoms, emotional function­ ing, cognitive functioning, role functioning, social well-being and functioning, sexual functioning and existential issues are components o f quality o f life. Five broad domains o f HRQoL are identified by Gift and Atchison (1995) and these are: op- The South African Journal o f Communication Disorders, Vol. 54, 2007 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) mailto:leanie.2305@vodamail.co.za mailto:anita.vandermerwe@up.ac.za 30 Leanie E ngelbrecht and A nita van der M erwe portunity/resilience, health perception, functional status, impair­ ments/disease and duration of life. Fang, Tsai, Chien, Chiu, Wang, Chen and Hsiung (2005) explain that quality of life has two fundamental premises. First, it is a multidimensional survey incorporating physical, functional, social, emotional and psy­ chological domains. Second, it is subjective and must be self- reported according to the patient’s own experience. These con­ ceptualisations o f quality of life (or HRQoL) encompass the three dimensions specified by the ICIDH-2 classification of the consequences of health conditions. These dimensions are: The Body dimension which “comprises two classifications, one for functions of body systems, and one for the body structure”; The Activities dimension which includes “the complete range of activities performed by the individual”; And the Participation dimension which “classifies areas o f life in which an individual is involved, has access to, and/or for which there are societal opportunities or barriers” (WHO, 2007 p. 1). Many self-completion questionnaires for assessing qual­ ity of life o f head and neck cancer patients are available (Ferlito et al., 2003). Established and well-known instruments for qual­ ity o f life assessment in head and neck cancer patients include the following: Functional Assessment o f Cancer Therapy — H ead and N eck Version (FACT HN); Performance Status Scale fo r Head and Neck Cancer (PSS HN); University o f Washington Quality o f Life Questionnaire (UWQOL); The Sickness Impact Profile (SIP); European Organisation fo r Research and Treat­ ment o f Cancer Core Questionnaire - Head and N eck Module (EORTC HN); Life Satisfaction Scale (LSC); H ead and Neck Radiotherapy Questionnaire (HNRQ); Locus o f Control (LOC); The General Health Questionnaire (GHQ) (Ferlito et al., 2003). The majority of quality o f life questionnaires include a global quality o f life measurement as well as focus on disease- and treatment specific outcomes and psychosocial issues. Areas of quality o f life that are usually assessed by quality of life instru­ ments for patients with head and neck cancer, include physical-, functional-, social-, and emotional- or psychological well being (Pretorius, 2004). These dimensions are also used in the current study. Thus a model that encompasses all levels of functioning and disability (WHO, 2007) as determinants o f quality o f life is adopted in this study. Patients with head and neck cancer face many conse­ quences of this disease and its treatment. First o f all there is the fear of death and dealing with the knowledge of having a life- threatening disease (Vickery et al., 2003). Head and neck cancer patients have many o f the same risk factors for suicide as pa­ tients with other forms o f cancer. It has been well documented that patients with a diagnosis of cancer are at increased risk of committing suicide (Henderson & Robert, 1997). Surgery may result in visible and extensive facial and neck disfigurement. Facial disfigurement is one o f the most potentially distressing aspects of head and neck cancer because of the vital importance o f the facial region to self-concept, interpersonal relationships and communication (Katz, Irish, Devins, Rodin & Gullane, 2003). Katz et al. (2003) found that head and neck cancer pa­ tients with greater facial disfigurement were more depressed than patients with less facial disfigurement. Similarly, Gamba, Romano, Grosso, Tamburini, Cantu, Molinari and Ventafrida (1992) found a significantly higher impact in head and neck cancer patients with extensive disfigurement versus head and neck cancer patients with minor disfigurement with regard to changed self-image, a worsened relationship with a partner, reduced sexuality, and increased social isolation. Functionally, swallowing, speech and the ability to work may be affected. One of the main factors that influence the perception o f quality o f life of head and neck cancer patients, is their ability to eat and swallow normally (Kendall & Leonard, 1999; Hutton & Williams, 2001). In almost all cultures eating is a social activity and patients who are not able to eat normally may withdraw from these activities. Morton (2003) also stated that life satisfaction scores for head and neck cancer patients were related to pain, dysphagia and speech difficulty. Prolonged disability and the cost of treatment threaten the socio-economic stability of patients and their families and patients fear that they may become a social and financial burden (Vickery et al., 2003). The effects of surgery, radiotherapy and chemotherapy can lead to limitation of social activities, a delayed return to work and feelings of isolation (Vickery et al., 2003). Quality of life in head and neck cancer patients will thus encompass many parameters such as survival, pain, aesthetics, functional changes, job changes and social and existential issues. Quality of life has been explored in several head and neck cancer populations overseas, but only a few studies have been done regarding the quality o f life of patients who have undergone total glossectomy (Davidson et al., 1993; Ruhl et al., 1997). With regard to total glosso-laryngectomy no such studies have been undertaken. In South Africa patients are often diagnosed with advanced head and neck cancer and extensive surgery may be the only treatment option. The issue o f debate is whether the quality of life after operations such as total glossectomy and total glosso-laryngectomy justify this drastic surgery. The answer to this question is of the utmost importance as it has implications for the patient who is going to have a total glossectomy or glosso-laryngectomy. In order to survive, pa­ tients are often willing to tolerate any form of surgery. If a good quality o f life can be achieved, it makes the use o f these radical procedures more acceptable to the patient and the surgeon. Mor­ ton (2003) emphasised that patients may learn to cope well with dysfunction and disability by adjusting their lifestyle so that overall quality o f life was not related to the treatment received. Functional status and quality o f life are thus not equivalent, and function itself cannot predict quality of life (Ruhl et al., 1997). Therefore, observed dysfunction, disability and disfigurement do not necessarily reflect the patients’ rating of their own qual­ ity of life. Also in total glossectomy and total glosso- laryngectomy patients, one should be careful not to equal post­ operative functioning with quality of life. It is possible' that a patient could be content with his/her quality o f life, post- operatively. A patient may feel that functional restrictions are bearable in the light of survival and may adapt well to func­ tional changes. It is therefore necessary to obtain information regarding quality of life as experienced by patients themselves. Information with regard to factors that affect' post­ operative adaptation is thus of the utmost importance as it has implications for pre-operative counselling as well as post­ operative support. If the multidisciplinary rehabilitation team, including the speech-language pathologist, is aware o f the fac­ tors that may influence quality o f life, the team will be better equipped for appropriate pre-operative counselling and post­ operative psychosocial support. A well-prepared patient may also adapt better post-operatively than an unprepared patient. Feedback from the patient in terms o f quality of life may thus influence surgeons' choices and speech-language pathologists' rehabilitation practices. ^ METHOD / Aim The aim of this study was to determine the quality o f life of two participants who had undergone total glosso-laryngectomy. D ie Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 54, 2007 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) Q uality o f Life after Total G losso-L aryngectom y 31 Research Design A qualitative research design was followed in the form o f two case studies (parallel case studies) o f patients who had under­ gone total glosso-laryngectomy. Case studies refer to qualitative studies o f one or a few illustrated cases. It is a method involving systematically gathering enough information about a particular person, social setting, event or group to permit the researcher to effectively understand how the subject operates or functions (Berg, 2007). Information regarding quality o f life was obtained from the two participants through semi-structured/semi-standard face-to-face interviews and open-ended questions were asked (Terre Blanche & Durrheim, 1999; Berg, 2007,). Berg (2007) explains that the semi-standard interview is more or less structured, that questions may be recorded during the interview, that the wording of questions are flexible, that the level o f language may be adjusted, that the interviewer may an­ swer questions and make clarifications and that the interviewer may add or delete probes during the interview. According to Patton (1990) semi-structured interviewing begins with the as­ sumption that the perspective of others is meaningful. The object o f such interviews is to get the person being interviewed to talk about their experiences, feelings, opinions and knowledge (Patton, 1990). Open-ended questions are utilised in order to encourage the participants to identify areas of importance to them, using their own vocabulary (Patton, 1990). Materials and Methods The researcher developed an interview schedule (Appendix A) containing a set o f questions regarding different domains of quality o f life (Neumann, 2000). A topic guide ensured that the same information was obtained from both participants (Patton, 1990). The interview-questions were designed according to information obtained from the literature regarding quality of life in head and neck cancer patients. The interview schedule in­ cluded questions about physical-, functional-, social- and emo­ tional/psychological well-being. The interview schedule was used to direct the interviews w ith th e participants, but the wording and order o f the questions were not fixed (Patton, 1990). Questions were asked in the participants’ first language. Multiple and leading questions were avoided to limit any suggestions of a desired answer from the subject (Terre Blanche & Durrheim, 1999). The interviews were conducted in the office of tlie researcher (first author) by the researcher. The interviews were recorded on a high quality Panasonic RQ-L10 tape recorder. Audio recording of the inter­ view sessions allowed both the researcher and the participant to cross check the data gathered, thus enabling a means o f validat­ ing the data. Participant 1, who was non-verbal, communicated by means o f writing. During this interview, the speech o f the researcher was tape-recorded to ensure complete transcription of the interview. The researcher transcribed the recordings and listened to the tapes several times to ensure that all data were transcribed correctly. Participant Selection Criteria The following selection criteria were set: The participant should have undergone total glosso-laryngectomy; should not have suf­ fered from any other medical condition than the glosso- laryngectomy; should not have had any other communication disorder; and should have been Afrikaans or English speaking as these were the languages in which the interviewer could conduct an interview. Both participants were patients at an academic hospital in Gauteng at the time o f the study. This was an example o f a purposive or judgmental sampling, where anyone in a hard-to- find target population was selected (Neumann, 2000). At the time o f the study there were only two surviving total glosso- laryngectomy patients that could be tracked in the Gauteng region. Participant 1 had surgery six weeks prior to the time of the interview and Participant 2, seven years prior to the interview. Participant 1 was a 51-year-old Afrikaans speaking white male who had a T4N3M0 squamous-cell carcinoma of the tongue-base and larynx. He underwent a total glosso- laryngectomy and bilateral radical neck dissections on the 4th of February 2004. The oral cavity was reconstructed with a Pectoralis Major musculo-cutaneous flap. The interview was conducted on the 23rd o f March 2004. The patient's course of radiotherapy began on the 29th o f March 2004. The patient made use of facial expressions and gestures to augment written communication. At the time of the interview the participant was divorced, had lost his job as a security inspector and had poor social support. He was from a low socio-economic income group. Participant 2 was a 63-year-old Afrikaans speaking white male who had a T4N3M0 squamous-cell carcinoma of the tongue-base and larynx. He underwent a total glosso- laryngectomy and bilateral radical neck dissections on the 2nd of December 1996. A Pro vox Prosthesis that makes tracheo­ esophageal voice production possible was inserted at the time o f the operation. The participant received a six-week course of radiotherapy post-operatively. The interview was conducted on the 9th of March 2004. The participant was a very lively com­ municator. His speech was fairly intelligible. He made use of a slow speech rate, intonation, eye contact, gestures and facial expressions to augment his speech. At the time of the interview the participant was married, resumed his work and had an ex­ cellent support structure. He was from an average socio­ economic income group. A summary of the participants' charac­ teristics is shown in Table 1. Participants Table 1: D escription o f the tw o participants Participant 1 Participant 2 Age 51 years 63 years Gender Male Male Race White White Language Afrikaans Afrikaans Treatment received at time of interview Total glosso- laryngectomy Bilateral radical neck dissections Total glosso- laryngectomy Bilateral radical neck dissections Post-operative radio­ therapy Time span since sur­ gery Six weeks Seven years Voice prosthesis in­ serted No Yes Functional speech No Yes Swallowing Oral (liquid diet) Oral (liquid diet) Work Unemployed Employed Social support Poor Good Socio-economic group Low Average The South African Journal o f Communication Disorders, Vol. 54, 2007 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) 32 Leanie E ngelbrecht and A nita van der M erwe Content analysis is a careful, detailed, systematic examination and interpretation o f a particular body o f material in an effort to identify patterns, themes, biases, and meanings (Berg, 2007). Thematic analysis o f the content o f the interviews was con­ ducted at five levels, according to the guidelines o f Patton (1990) and Terre Blanche and Durrheim (1999). Terre Blanche and Durrheim (1999) describe the process o f data analysis as reading through your data repeatedly, and engaging in activities o f breaking the data down (thematising and categorising) and building it up in novel ways (elaborating and interpreting). Dur­ ing this process the researcher steered clear o f imposing prior theoretically derived concepts on the data. Instead, careful in­ spection o f the narrative facilitated the generation and develop­ ment o f new concepts from the research data via an inductive analysis. The following steps were followed: Familiarisation and immersion: The researcher read through the data repeatedly and intensely. Relevant information was selected, irrelevant informa­ tion was eliminated, key words were identified and notes were made during the reading o f the data. A summary was made of each o f the components o f the interview schedule (general infor­ mation, physical well-being, functional well-being, social well­ being and emotional/psychological well-being). Inducing themes (in relation to the research question): The researcher identified the organising principles that “naturally” emerged from the data. This was done by inductive analysis, meaning that themes emerge from the data as opposed to themes being imposed on the data prior to data analysis. Coding: Coding means breaking data up in analytically relevant ways. The copy-and-paste func­ tion o f a word processor program was used to move bits o f text around to fit the identified themes. Elaboration: Elaboration means the discovery o f new dimensions o f the subject that are being studied or looking at data in a fresh way. Comparisons were made o f sections o f text that appeared to belong together and comparisons were made between themes identified from the two interviews. Interpretation and checking: Themes were dis­ cussed in relation to available literature. Ethical considerations Before initiating the research, the researcher received ethical clearance for the research project from the Research and Ethics Committee o f the Human Sciences Faculty o f the University of Pretoria. Written informed consent was obtained from both par­ ticipants and ethical issues regarding tape recording o f inter­ views, anonymity, confidentiality and withdrawal from the re­ search project were discussed. Both participants gave consent that results o f the study may be published. Both participants were patients o f a speech therapy department at an academic hospital and support- and follow-up services were available. Trustworthiness Measures to ensure trustworthiness that were implemented in this qualitative study included, truth-value, applicability, consis­ tency and neutrality (De Vos, 2002). Truth-value establishes how confident the researcher is with the truth o f the findings, based on the research design, in­ formants, and context (De Vos, 2002). On the research design level, truth-value was established by designing the interview schedule according to information obtained from the literature regarding quality o f life in head and neck cancer patients. Semi­ structured interviews, which are an acknowledged tool in quali­ D ata analysis tative research, were conducted in the participants’ first lan­ guage (Afrikaans) to allow for free expression. Interviews were recorded to permit transcription o f every utterance. Participant 1 wrote down his answers. All the answers o f Participant 2 were transcribed and unintelligible utterances were later verified with him. In the results direct quotes (translated into English for the purpose o f publication o f the data) from the transcribed data are presented. Applicability refers to the ability to generalise from the findings to the greater population (De Vos, 2002). One perspec­ tive on applicability in qualitative research suggests that the ability to generalise is not relevant in many qualitative research projects. Results o f case studies can to some extent be general­ ised, but it was not the intent to generalise the findings o f this study to the greater population o f total glosso-laryngectomy patients. Each person’s situation is unique and there are different variables that may influence quality o f life after total glosso- laryngectomy. Since total glosso-laryngectomy is such a radical surgical procedure with very specific effects on function, it is possible that some o f the experiences may be similar in persons who have undergone total glosso-laryngectomy. Berg (1997) is o f the opinion that case studies could not only represent the spe­ cific individual, group or event studied, but could also provide understanding about similar individuals, groups or events. Consistency indicates whether the finding would be con­ sistent if the enquiry were replicated with the same subject or in a similar context (De Vos, 2002). This study can be viewed as consistent, as an interview schedule with a specific topic guide was used to obtain the information. The themes that emerged from the different questions were checked with the participants to assure that the message that the participant was conveying to the interviewer was understood correctly. Neutrality refers to the degree to which the findings are a function solely o f the informants and conditions o f the research and not o f other biases, motivations and perspectives (De Vos, 2002). Questions were asked in such a way that it should not have influenced the answers o f the participants. The researcher merely determined and reported the views, perspectives and feelings o f the participants. To establish whether the categories, explanations and interpretations o f the data were reliable, the data were also analysed by a clinical psychologist with a doc­ toral degree and who has experience in qualitative research stud­ ies and content analysis. The themes that were identified by the researcher and the conclusions were discussed with the psy­ chologist, and a few discrepancies were resolved. RESULTS AND DISCUSSION The most prominent themes that emerged from the thematic analysis are described and discussed in this section. The themes are summarised in Table 2. For the purpose o f gaining a compre­ hensive view of the experiences and feelings o f the two partici­ pants, the original categories o f the interview schedule namely physical-, functional-, social- and emotional/psychological well­ being will be slightly adapted. Experiences in these different domains interact and it may be artificial to categorise them ac­ cording to the theoretical guidelines that were followed in the interview schedule. Themes that do not fit any o f the original categories emerged and these will also be described. Functional well-being Speech and communication At the time o f the interview, which was six weeks post­ surgery, Participant 1 was still not able to communicate verbally Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 54, 2007 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) T a b le 2: Sum m ary o f quality o f life as perceived by the tw o participants Q uality o f Life after Total G losso-L aryngectom y 33 Tim m P a i f M p it l Participant 2 Speech Non-verbal, feelings of isolation, uselessness Has functional speech and that enhanced integration into the community Work/finances Unemployed - affected self-image negatively Employed - affected self-image positively Perception of other peoples’ reaction towards them Very aware and sensitive, perceived reaction as rejection Ambivalent (in the process of becoming less sensitive) Isolation Prefer to be alone, avoid people, but also want to make contact with people Part of the community (progressed from isolation to integration) Acceptance and support Little acceptance/support Accepted by most significant others and excellent support structure Changed self-image Perceives himself as abnormal Perceives himself as abnormal Adjustment Patient still in the process of adjustment, poor coping skills Patient has adjusted well and has overcome most problems Overall/global quality of life Poor Good Pre-operative counselling Patient not counselled prior to surgery Patient partially prepared for surgery and its effects Role of the speech-language pathologist Speech rehabilitation Swallowing rehabilitation Support Speech rehabilitation Swallowing rehabilitation Support and this circumstance had far reaching consequences. The inability to speak resulted in him losing his job and led to high levels o f frustration. Being a security-inspector, he relied on verbal communication. The inability to speak also prevented him from fully expressing his thoughts, feelings and desires. Communication needs could only be fulfilled in a limited way by writing. He said: will never be able to speak again. It is incredibly difficult to be suddenly mute - after 51 years o f talking. It is a strange world. Totally strange. Because I c a n ’t speak I have lost my jo b and I am struggling financially. Without speech I am useless to the company, because I have to speak with a radio control as well as to clients. ’ Participant 2 experienced the same problem initially, but his life changed since he learned to speak. He could express his feel­ ings, resume his work with greater ease and frustration was re­ duced. He expressed his experience o f the loss o f speech as fol­ lows: . - / I n the beginning it was j difficult to communicate be­ cause nobody understood me. Everywhere I went as well as at work I had to write i f I wanted to communicate with anyone. A n d that was frustrating. After I started with speech therapy and I could speak to people, this has improved. ’ J Communication is a major function o f the face and neck. Tilting the head, facial expressions such as smiling and frowning, and above all, speech, laughter and other emotional expressions are all part o f human interaction (Boone & McFarlane, 1994). The sound o f one’s vocalisation often mirrors one’s internal emo­ tional state (Boone & McFarlane, 1994). It seems as though patients who are able to communicate verbally do better emo­ tionally and psychologically than those who have to rely on writing. A loss o f communication may also signify a loss o f closeness and love. We create closeness through communica­ tion (Ventegodt, Andersen, Rromann & Merrick, 2003). The importance o f verbal communication to quality o f life confirms the role o f the speech-language pathologist in providing inter­ vention that will enable the patient to achieve intelligible speech. Work/finances The ability to work had a major impact on the partici­ pants’ quality o f life. Because he has not been able to work, Participant 1 experienced feelings of worthlessness and not be­ ing able to make a contribution to life. He said: ‘People see me as a sort o f parasite that wants to live on other people. People also see me as someone that has nothing to contribute. Without speech I am useless to the company, because I have to speak with a radio control as well as to clients. ’ In contrast, Participant 2 experienced pride and found satisfac­ tion in his ability to continue his career and provide for his fam­ ily. This impacted positively on his self-image. He was able to go back to work two months after the operation. This fact con­ tributed to his feeling o f pride. The ability to communicate ver­ bally allowed Participant 2 to resume his work and that en­ hanced his process o f integration into the community. This was not possible for Participant 1 who was non-verbal. Social well-being Perception o f other peoples ’ reactions towards them Both participants were very perceptive with regard to the reactions o f people towards their “disability”. At the time o f the interview Participant 1 was more intensely sensitive than Par­ ticipant 2. The fact that Participant 1 was interviewed only six weeks after his total glosso-laryngectomy, may explain why his sensitivity towards the reactions of people was more intense than those of Participant 2. Participant 1 preferred to be alone and actively avoided people, although he longed to make con­ tact with people as he did before. His inability to communicate verbally and the abnormal way in which he eats caused reac­ tions from people in his environment. Participant 1 said: 7 am shy. Yesterday the wife o f the guy lying in the room opposite me came to visit him. The way in which I eat is fu n n y because I must place the fo o d at the back o f my mouth, and it upsets me i f people watch me while I ’m eating. There is a lady in the ward that calls me a “rude bastard” because I ’m not talking to anyone - until I wrote her a message to explain why I ’m not talking to anyone. A ll strange (might be a better translation: unfa­ miliar) people think I ’m rude. They accept my condition but are clearly uncomfortable. ’ Seven years after his total glosso-laryngectomy, Participant 2 The South African Journal o f Communication Disorders, Vol. 54, 2007 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) 34 L eanie E ngelbrecht and A nita van der Merwe has possibly come to terms with these reactions, although he contradicted himself about this issue during the interview. He was still very self-conscious while eating. Initially, his altered way o f speech also drew attention. Participant 2 said: 7 am very self-conscious and I think people are looking at me — that is my problem. Or when I speak, people look at me in a fu n n y way. When I speak, people stare at me, especially children. It did bother me, but not any more. Unfamiliar people do not bother me any more when I interact with them. They go on as i f nothing is wrong with me. In other words they look p a st the prob­ lem. ’ Isolation Both participants experienced a degree o f isolation and o f being “separate” from other people. Participant 1 possibly experienced this more intensely, as he was not able to communi­ cate verbally. He said: 7 d o n ’t have a problem to write what I want to say. I f people only wanted to read! It is the only way to tell people that although I do not have a tongue or a voice, I still am a person with feelings, trying to share those fe e l­ ings. ’ Participant 2 was also isolated initially, but over the years has gradually returned to the community. Only after seven years did he have the courage, for example, to attend a church camp. The fact that Participant 2 could communicate verbally facilitated the process o f reintegration into the community. He could re­ sume his work and communicate with family and friends. Par­ ticipant 2 said: 7« the beginning I d id n ’t take part in any activities. But that has now changed. One must never isolate one self. I have tried that, but it d idn’t work. Because I couldn’t speak, I avoided going to church fo r a whole year. Acceptance and support Participant 1 struggled to cope due to a very limited sup­ port structure. He expressed his wish for his mother’s accep­ tance and support more than once during the interview. Al­ though his sister, ex-fiancee and ex-wife supported him, he ex­ pressed the longing for support from his mother. He also did not receive support from his children, previous colleagues or friends. Participant 1 said: ‘Most fam ily members and friends accept me as I am. But there are others that do not want to understand. Like my mother, fo r example. She is very impatient with me. I f I write her a message, I can see that she does not really want to read it. I f I snap my fingers to attract her atten­ tion, she says that she is not a dog that I can snap my fingers at. ’ Participant 2 reported that his wife, family and friends accept him as he is. He had persistent support from his wife since the time o f diagnosis. She supported him every step o f the way in all practical and emotional aspects. Two o f his three children, people from his church and neighbourhood, his general practi­ tioner and colleagues provide a great deal o f support. His em­ ployer accommodated him and supported him in the process o f resuming his work after the operation. Participant 2 has possibly coped with all the changes because o f his excellent support structure. He said: 7 went on a church camp in February fo r the fir st time, where the people treated me as a normal human being. Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 54, 2007 They treated me like a normal human being. It is wrong i f people do not treat you as a normal human being. But in general people accept me fo r who I am. Nobody re­ jects me. My fam ily has supported me physically and emotionally. No one rejected me. We go on holiday to­ gether when we can. One must have support — it is very important. ’ Social support can be defined as the resources provided to peo­ ple through their interactions with other people. Morton (1995) stated that lack of adequate family support has a negative im­ pact on quality o f life. Head and neck patients should be pro­ vided with the necessary support services early in the process, as well as with follow-up later in the process (Casper & Colton, 1993). Support should include medical as well as psychological help (Harrison, 1983). As psychological distress is common in patients with head and neck cancer, psychosocial support has a role in reducing this distress (Hutton & Williams, 2001). In addition, social support, from either family members or groups, can help restore some o f the loss o f control that cancer patients may experience (Sheridan & Radmacher, 1992). Thus, they need to be provided with as many opportunities as possible to increase their sense o f control. Vickery et al. (2003) further stated that the physical and psychological stresses from head and neck cancer could also be substantial for patients’ partners. Partners may in fact report greater distress than patients may on some quality of life scales (Vickery et al., 2003). Partners or significant others may also go through a process o f grief while accepting the changes in the person close to them. Support ser­ vices should always be available to the patient and his or her significant others. Structured education and support-group based services play a major role in meeting information and supportive needs (Todd, Roberts & Black, 2002). Emotional/Psychological well-being Changed self-image Self-image refers to our overall perception o f ourselves, and the way we feel about how others see us (Appleton & Ma- chin, 1995). Both participants experienced feelings o f being "different" from other people. Participant 1 expressed the changes in his way of eating and communicating as being the causes o f this perception o f being "different". Change in physi­ cal appearance is another reason the participants experienced themselves as "different". Participant 1 stated: 7 get a frig h t each time I look in the m irror’. Participant 2 insisted that people should treat him as "a normal human being". These words may suggest that he still has not completely accepted himself as "normal" or that he constantly needs affirmation that he is not “abnormal”. Even though Par­ ticipant 2 acquired the ability to communicate verbally, the glossectomy speech and tracheoesophageal voice does not sound normal. This fact may contribute to his feeling o f being different. Facial appearance is part o f our overall self image and an important entity in establishing interpersonal relationships. The face is the most visible bodily area w here/all the major senses are located, as well as being the area o f a person's self- identity. Disfigurement in this area has far-reaching implica­ tions for a patient’s psychosocial interaction with the world and adversely affects the patient’s self-esteem (Appleton & Machin, 1995). Gamba et al. (1992) suggested that a head and neck can­ cer patient’s self-concept should be studied as a possible diag­ nostic parameter to identify individuals at high risk for psycho­ social maladjustment. The fact that patients "no longer recog­ R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) Q uality o f L ife after T otal G losso-L aryngectom y 35 nise themselves" was the most frequently expressed reason why patients felt that treatment for head and neck cancer was not worth the effort (Gamba et al., 1992). The issue o f identity needs to be carefully considered in total glosso-laryngectomy patients. They may experience them­ selves as “changed” or “different” not only because of the facial disfigurement but also due to the loss o f voice. The voice of a person is as characteristic o f the person as the face is. Facial disfigurement, loss of voice and the inability to communicate are all closely bound to a sense o f loss of identity. Speech-language pathologists should be aware o f how the patient's self image has altered following total glosso-laryngectomy. They should also be aware o f the patient's resources for coping and o f any grief reactions that are evident. The patient should be referred for appropriate counselling if needed (Casper & Colton, 1993). Adjustment Adapting to a major change in one’s life such as a total glossectomy or total glosso-laryngectomy is a process that may take many years and even a lifetime. Participant 1 was still in the beginning phase o f the process o f adapting to a new life, and did not yet posses the skills to help him cope with all the changes in his life. He was not even prepared for the changes that were imposed on him by the surgery. He said: 7 fe e l like a baby in an unknown world. I have to learn to crawl before I can walk again. ’ Participant 2, who had the surgery seven years prior to the inter­ view, reported that his depression decreased over the seven years as he adapted to his situation. He had come to terms with many o f the changes in his life, including an altered way o f eat­ ing and communicating. He described this coming to terms as a process that took place over the years. He went through different phases o f growth towards acceptance. The gradual acceptance by family and friends could also promote patient adaptation as is evident for Participant 2. He said: 7 « the beginning I didn't take p art in any activities. I was disheartened and p itie d , myself. But this has now changed. Never lose hope. I was extremely hopeless at some stage. I f it wasn ’t f o r my wife, the speech therapist / and the Grace o f God, I wouldn ’t have been here today. Never pity yourself. It doesn ’t work. Life is tough. It does not help to sit in the ashes. One should never give up hope! One should live into the future, not in the past. Never isolate yourself. I did that and it didn ’t work. ’ Head and neck cancer and its treatment place significant adap­ tive demands on patients and their families (Katz et al., 2003). During the first year o f treatment, almost a third o f head and neck cancer patients reported having mood disorders (Petruson, et al., 2003). Casper and Colton (1993) explained that some in­ dividuals with head and neck cancer could initially withdraw from social contact, especially if people show evidence o f dis­ comfort with their condition. This withdrawal is a normal stage in the process o f accepting changes in their self-image or func­ tional abilities. Hutton and Williams (2001) reported that de­ pression tends to decrease with time after the onset of head and neck cancer, and also decrease with increasing age. Morton (1995) reported life-satisfaction scores in head and neck cancer patients to increase over time. Q uality of life 1 The participants were asked questions about their perception of changes in their quality o f life. Participant 1 felt that his quality o f life has drastically decreased since the surgery. He was still mourning the loss o f communication and the ability to eat nor­ mally. He said: ‘Before the operation I could do so many things that are no longer possible. ’ Participant 2 on the other hand felt that his quality of life after - the surgery was better than his quality o f life shortly prior to surgery. Since the operation he has adapted his life to accom­ modate his changed abilities. He has again found meaning in life and was continuing to improve his quality o f life by expand­ ing social contact. Quality of life as globally assessed by patients does not directly correlate with measures o f physical function, but ap­ pears to depend on psychological, spiritual, and existential fac­ tors and also support systems (Simmons, Bremer, Robbins, Walsh & Fischer, 2000). Kim and Alvi (1999) found that 94% o f patients who had been diagnosed with cancer, feared death, metastasis, recurrence, and the loss o f the ability to swallow, speak or breathe in the usual manner. Uncertainty over the fu­ ture and the reality o f the loss they experienced impact on the subjective perception o f quality of life. Hopefulness and having a life purpose help to balance the worse outcomes (Dow, Ferrell, Leigh, Ly & Gulasekaram, 1996). A dditional themes Pre-operative counselling Both participants received very little pre-operative infor­ mation or counselling. According to both participants the ab­ sence o f pre-operative counselling impacted negatively on their post-operative recovery and quality o f life. Adjustment to the major changes in self image and functional ability was compro­ mised because they were not empowered to prepare themselves for post-operative changes. Participant 1 expressed his shock at the way his body was changed when he woke up after the operation. He was also not aware o f the fact that he was going to lose his voice. Partici­ pant 1 said: 7 was upset, but what does it help? When I woke up I saw there was a hole in my throat. The hole in my chest was ju s t a big shock; nobody told me that there is going to be a hole in my chest. ’ Participant 2 received some information regarding swallowing and speech from his surgeon, but also did not receive any coun­ selling from other members o f the multidisciplinary team such as the speech-language pathologist. He said: ‘H e told me it was going to be a big operation. He ex­ plained to me what to expect, also with regard to speech and swallowing. He told me that I w on’t be able to speak normally again. ’ Shared decision making (SDM) is currently recommended as a standard o f care, especially when there are alternative treat­ ments available or when there is uncertainty about the outcomes o f treatment (Mandelblatt, Krelling, Figeuriedo & Feng, 2006). According to Fayers and Machin (2000) many patients and pa­ tient support groups demand to be given full information about the consequences o f the disease, its treatment and the impact on aspects o f quality o f life. Patients should also be able to express their opinions (Fayers & Machin, 2000). Street (1997) found that patients with breast cancer who had more actively partici­ pated in their consultations with their doctors, particularly in The South African Journal o f Communication Disorders, Vol. 54, 2007 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) 36 L eanie E ngelbrecht and A nita van der Merwe terms o f offering opinions, assumed more responsibility for treat­ ment decisions. Davidson et al. (1993) stated that candidates for total glossectomy should be carefully considered and that pre-operative psychiatric evaluation could assist the surgeon in making apt deci­ sions regarding treatment. Newell, Ziegler, Stafford and Lewin (2004) found that head and neck cancer patients need individual­ ised pre-treatment information in an appropriate environment and that there should be more than one opportunity for patients to dis­ cuss their options. Thereby the patient would be able to make an informed decision to undergo surgery. If the experiences o f the two participants in this study are a true reflection o f the nature o f the local service delivery model, the relevant professionals need to take a serious look at the issue o f pre -operative counselling, shared decision making and informed con­ sent before glossectomy and glosso-laryngectomy in South Africa. Pre-operative assessment and counselling by a multidisciplinary team including the surgeon, psychologist, social worker, physio­ therapist and speech-language pathologist would be the ideal. The team should prepare the patient and family for what the operation entails and how it will affect post-operative functioning. Role o f the speech-language pathologist Both participants highly valued the contribution o f the speech language pathologist to their rehabilitation and quality of life. The speech-language pathologist has knowledge o f the effects o f total glosso-laryngectomy on swallowing and speech and also insight into the emotional and social effects of altered ways o f swallowing and communication and is therefore equipped to sup­ port patients. By providing pre- and post-operative counselling as part o f a multi-disciplinary team and speech and swallowing inter­ vention, the speech-language pathologist can make a major contri­ bution to improve quality o f life for patients with a glossectomy or glosso-laryngectomy. CONCLUSION Total glosso-laryngectomy represents the extreme of extensive head and neck cancer surgery. Both participants expressed their appreciation o f being alive, but stated that their quality of life was greatly affected by the surgery. The results o f this study showed that they tend to feel isolated and different from other people. They are very sensitive to the reaction o f others towards their physical appearance and their changed way o f eating and speaking. Func­ tional speech, as well as acceptance and support from significant others appear to be the most important protecting factors o f quality o f life. Time appears to be a contributing factor to adapting to physical and functional changes. An important outcome o f this study is the raised awareness that shared decision making and pre-operative counselling o f the patient and significant others in our local service delivery context needs to be addressed. A multidisciplinary team which includes the surgeon, speech-language pathologist, physiotherapist, psychologist and social worker should prepare the patient and significant others for the consequences o f surgery for head and neck cancer. To make, an informed decision regarding surgery, it is crucial that the patient is aware o f all the effects o f total glosso-laryngectomy on physical appearance, swallowing, and communication. The choice to undergo surgery remains with the person with head and neck cancer. In the case o f Participant 2 the choice to undergo a glosso-laryngectomy to cure him from cancer was a worthwhile deci­ sion. After seven years he was still alive and was leading a fulfilled life in spite o f the changes in functional ability. In the case o f Participant 1 there is no easy answer. Participant 1 passed away 6 months after the interview due to massive local recurrence and metastases. REFERENCES A ppleton, J. & M achin, J. (1995). W orking with o ra l cancer. O xon: Winslow P re ss Ltd. B erg, B .L. (2007). Q ualitative research m ethods f o r th e so c ia l sc ien ces (6lh e d ) B oston: Pearson. B oone, D .R . & M cFarlane, S.C. (1994). The voice a n d vo ice therapy. x evv Jersey: P rentice H all. 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W orld H ealth O rganization. (2007). International classification o f functioning and disability: A new release from W H O . R etrieved on 2007/08/07 from the W orld W ide W eb: http ://w w w .w ho.int/inf-pr-1999/en/note99-19.htm l. The South African Journal o f Communication Disorders, Vol. 54, 2007 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. ) http://www.who.int/inf-pr-1999/en/note99-19.html 38 APPEN D IX A Interview Schedule for S em i-S tructured Interview s L eanie E ngelbrecht and A nita van der M erw e GENERAL INFORMATION What surgery did you receive? When did it take place? Did you have any other treatment? Was it before or after surgery? How were you informed of the diagnosis o f cancer? Did you have a choice in the type of treatment you could receive? Were the implications/consequences of the surgery discussed with you? PHYSICAL WELL-BEING How did the surgery affect your quality of life in terms of your general physical well-being? Can you independently perform daily activities since the surgery? Did you experience any difficulties in breathing? Did you experience pain? Do you have sufficient energy since the surgery to perform daily activities? Do you have full range of movement in the shoulder and neck areas? Are there any other physical problems you experienced since the surgery? FUNCTIONAL WELL-BEING FEEDING What were the effects of the surgery on your ability to eat and to swallow? Describe how you eat. Did your diet change since the surgery? Did your appetite decrease after surgery? Did you experience any weight loss after surgery? Did your experience of eating in a social context change since the surgery? COMMUNICATION What were the effects of the surgery on your ability to communicate? How do you communicate with other people? Do you think that people understand your speech? How do your communication abilities affect your interaction with people? How do you feel about your way of communication? WORK AND FINANCES What job did you have before surgery? Could you go back to work? Did the surgery or your physical health cause financial problems? SOCIAL WELL-BEING SOCIAL INTERACTION AND FAMILY RELATIONSHIPS How did the surgery affect your social interaction? How did it affect family relationships? Do you take part in less social activities since the surgery? How do family and friends react during social interaction? How do you feel about these reactions? SUPPORT Who supported you since you were diagnosed with cancer? Did your family support you physically and emotionally since the surgery? Which other medical professionals except your surgeon were involved with you before the surgery and how did they help you? Which other medical professionals except your surgeon were involved with you after the surgery and how did they help you? EMOTIONAL/PSYCHOLOGICAL WELL-BEING What were the effects of the surgery on your emotional or psychological well-being? / What emotions did you or do you experience since the surgery? / How does your quality of life before surgery compare to your quality of life after the surgery? How would you describe your life as a whole now? How do you see your future? If you could have the choice again, would you decide to undergo this operation? Die Suid-Afrikaanse Tydskrif vir Kommunikasieajwykings, Vol. 54, 2007 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2. )