Head and neck cancers (HNCs) are malignancies that affect structures including the tongue, the floor of the mouth and other areas of the oral cavity, as well as the larynx and nose, among other structures (Feber, 2000). Cancer Research UK (2015a) estimates that approximately 3% of all cancers diagnosed are HNCs, an increase of 30% since the early 1990s. As with all cancers, survivorship has improved; it is estimated that 62 500 people who had been diagnosed with HNC were alive in the UK at the end of 2010 (Cancer Research UK, 2015b).
HNC has a number of known risk factors including smoking and excessive alcohol consumption (Rettig and D'Souza, 2015). In recent years, human papilloma virus (HPV) type 16 has become a well-established risk factor for three types of HNC (Shaw and Beasley, 2011; Rettig and D'Souza, 2015). HPV-driven cancers are becoming increasingly common, rising from being found in fewer than 20% of HNCs in the 1980s to 70% over 2000-2004 (Palma and Nichols, 2014). Research suggests that cancers that originate from HPV infection have better long-term survival rates than those caused by tobacco or alcohol (Tahtali et al, 2013).
A common treatment modality for HNC is surgery. The rate of surgical intervention for patients diagnosed with HNC in England has been estimated by the National Cancer Intelligence Network to be 42%–71%, depending on the primary site (Price et al, 2011). These figures suggest that a significant proportion of patients diagnosed with HNC will go on to require surgical intervention.
Surgery for HNC can leave patients with changes to their appearance, as well as to the way they eat, drink and speak (Foulkes, 2013), ultimately affecting their quality of life (QoL). QoL is defined by the World Health Organization (2017) as ‘an individual's perception of their life’ including a ‘person's physical health, psychological state, personal beliefs, social relationships'. Understanding how the QoL of patients with HNC is affected is becoming more important. Haddad et al (2008) note that the focus on improving QoL for patients with HNC is increasing because of better surgical interventions combined with a multidisciplinary approach.
People with a visible disfigurement can experience high levels of psychological distress (Rumsey et al, 2004), psychosocial difficulties (Newell and Marks, 2000) and prejudice in social and work environments (Ryan et al, 2012; Stone and Wright, 2013) but the psychological basis is poorly understood.
When a person has to deal with not only a facial disfigurement but also a diagnosis of cancer, the impact on QoL could intensify.
The importance of addressing QoL and supporting patients with cancer has also been an increasing consideration for the government. The paper Living With and Beyond Cancer (Macmillan Cancer Support, Department of Health and NHS Improvement, 2013) discusses the support required to help maintain a good QoL for all people with cancer.
Methodology
A number of quantitative studies look at different aspects associated with facial disfigurement resulting from surgery for HNC (Rogers et al, 2008; Moolenburgh et al, 2009; Fingeret et al, 2012). However, as this review's aim is to explore factors affecting QoL in HNC, a qualitative approach was adopted. The acronym PEO (Bettany-Saltikov and McSherry, 2016) was used to assist with the development of the review question and keywords. This offered clarification in relation to the population (patients), the exposure (HNC) and the outcome (QoL) and also allowed the following search terms to be developed: patient, cancer, head and neck, facial disfigurement, surgery, QoL.
The use of subject-specific databases allows advanced searching to be used to find as many relevant articles as possible (Gerrish and Lathlean, 2015). The PsycINFO, Ovid Nursing Full Text Plus, British Nursing Index and Sage databases were searched. An initial search of each database retrieved a total of 128 articles. Sifting through the articles to eliminate duplicates, and irrelevant papers led to 13 articles being deemed relevant for consideration. After applying the exclusion and inclusion criteria (Table 1), a total of eight articles were found to be suitable.
| Inclusion criteria | Exclusion criteria |
|---|---|
| Primary research papers |
Reviews, opinion and editorial papers |
Findings
Through reading and analysing the eight core papers, three main themes emerged with one subtheme: changes within self; help from healthcare professionals (with a subtheme of information); social support; and social reintegration. To gain a greater understanding of the themes, they are discussed in relation to the relative strengths and weaknesses of the core texts.
Changes within self
Three main issues arose within this theme: patients no longer felt like themselves or that they had lost a part of who they were (Semple et al, 2008; Röing et al, 2009; Konradsen et al, 2012; Parker et al, 2014; Henry et al, 2014; Threader and McCormack, 2016); patients' values changed (Semple et al, 2008; Röing et al, 2009, Parker et al, 2014; Henry et al, 2014; Moore et al, 2014; Threader and McCormack, 2016); and patients described feeling negative emotions such as low self-esteem or self-consciousness or felt a loss of control (Semple et al, 2008; Parker et al, 2014; Henry et al, 2014).
Unlike the other two facets to this theme, negative emotions seemed specific to facial disfigurement and this is demonstrated as the studies that found this were either looking solely at patients with disfigurement (Parker et al, 2014; Henry et al, 2014) or had a high proportion of participants (80%) who had required surgery (Semple et al, 2008). Feeling like a different person and changes in values were also found in studies focusing more generally on the experience of patients with HNC (Threader and McCormack, 2016) or where fewer participants had undergone surgery (Röing et al, 2009; Moore et al, 2014). This suggests that, while negative emotions are relevant for those with facial disfigurement, the loss of the self and changing values may result from receiving the cancer diagnosis as much as becoming disfigured.
Help from healthcare professionals
Konradsen et al (2009) found that patients felt it was inappropriate to talk about their disfigurement with nurses. However, other studies acknowledged patients had supportive and open relationships with their health professionals, which improved outcomes by reducing anxiety (Henry et al, 2014) and self-confidence (Semple et al, 2008) and increasing their ability to cope (Moore et al, 2014). Where negative consequences were alluded to, poor communication between staff and patients were attributed to this (Parker et al, 2014; Henry et al, 2014; Moore et al, 2014).
It is worth noting that Konradsen et al (2009) carried out their study within days of patients undergoing their disfiguring surgery, while Semple et al (2008), Henry et al (2014) and Moore et al (2014) followed patients for a longer period after treatment. Konradsen et al (2009) also focused on the relationship between patients and ward nurses. It is possible that patients had yet to find the courage to mention their disfigurement, or felt that ward nurses were inappropriate people to raise their concerns with and a specialist nurse would be the person with whom they would discuss this. Semple et al (2008) pointed out that the patient participants in their study found their clinical nurse specialist to be extremely beneficial. These factors may explain why Konradsen et al (2009) found that patients did not feel able to raise their concerns with nurses.
Information
The studies alluded to the information needs of the patients who had undergone disfiguring treatment.
Both Semple et al (2008) and Parker et al (2014) found patients were often not provided with appropriate and timely information. Parker et al (2014) suggests that information provided to participants was generic and that participants were not told about how significantly the surgery would affect them; similar findings were reported by Henry et al (2014).
The aim of the study by Parker et al (2014) is clear in that they wished to understand the experience of major surgery on patients with HNC, which makes their findings particularly pertinent, especially when supported by another study focused on disfigurement (Henry et al, 2014) and a study with a high percentage of participants who had undergone surgery for HNC (Semple et al, 2008).
Social support
This thematic analysis also identified that participants needed to seek social support from others to help them cope with and accept their disfigurement. Patients were reported to seek social support from various people during this time of change (Röing et al, 2009; Konradsen et al, 2012; Parker et al, 2014; Henry et al, 2014; Moore et al, 2014; Threader and McCormack, 2016). Some studies took this further, referring to how patients often turned to peers who had similar experiences to them for support (Parker et al, 2014; Moore et al, 2014; Threader and McCormack, 2016).
Semple et al (2008) reported no change or improvement in the social relationships of those who had undergone surgical management of their HNC. This contradicts findings of other studies (Parker et al, 2014; Moore et al, 2014; Threader and McCormack, 2016). However, Semple et al (2008) noted limitations to their study, including that participants were undergoing curative treatment, which may have led to a more positive outlook.
Social reintegration
Studies indicated that, although participants wished for support from others, they were often worried that their appearance might be off-putting and therefore dreaded the reaction of other people (Konradsen et al, 2012; Henry et al, 2014). This was also a factor when patients were deciding when to reintegrate socially (Röing et al, 2009; Konradsen et al, 2012; Henry et al, 2014; Threader and McCormack, 2016). Henry et al (2014) pointed out that an awareness of others' reactions increased anxiety, heightening patients' negative emotions in social situations. Some studies emphasised the need for patients to be reacted to normally (Semple et al, 2008; Henry et al, 2014) to feel accepted (Röing et al, 2009).
Konradsen et al (2012) suggested one way to help integration was by starting to socialise while in hospital. Semple et al (2008) suggested this should be a gradual exposure to help build confidence. Both strategies could have implications for how best to support patients with facial disfigurements.
Discussion
Although a number of the studies look at experiences of HNC, in general it was possible to extract findings related to facial disfigurement through using the articles that focused on facial disfigurement and triangulating the findings with other studies. There was a lack of papers from the UK but this seems to be of little relevance as the issues raised are universal.
Much of the literature reviewed focused on changes in participants' emotions and perspective. This mirrored a meta-synthesis by Lang et al (2013), who referred to the disruption of patients' emotions as well as the existential losses they experience; such distress is common in people with visible disfigurement (Rumsey et al, 2004).
Significant changes in a patients' values as a result of diagnosis and treatment may be attributed to a diagnosis of cancer, rather than facial disfigurement. Again, this finding is mirrored by Lang et al (2013) and is also reported within studies that focus on breast cancer (Lampic et al, 2002) and cancers in general (Greszta and Siemińska, 2011). This does not mean this is not an important issue for those experiencing facial disfigurement and the general lack of qualitative studies into this area suggests that the changing self is an area for further study.
Lang et al (2013) also refer to how important health professionals were to patients, and how the interactions patients had with practitioners could affect self-esteem and other views of themselves. Salander et al (2016) comment that patients with HNC have a number of motives for contacting specialist nurses, including to discuss issues around their treatment. It is has been demonstrated that QoL is improved when health professionals provide support through psychosocial interventions to patients with HNC (van der Meulen et al, 2014), suggesting support during and after treatment can significantly improve QoL for these patients.
The reviewed studies highlighted how patients often felt that both the amount and the appropriateness of information given to them affected their experiences of treatment (Semple et al, 2008; Moore, et al, 2014). Having enough time to talk and ask questions was of genuine benefit to patients, resulting in a better recovery (Bowers, 2008), and patients were more satisfied with their care when they received adequate amounts of information (Semple and McGowan, 2002). Bowers (2008) suggested that information should be tailored to individual needs. Providing information can also help patients make informed decisions about their treatment (Feber, 2000), which could ultimately affect QoL.
Much of the reviewed literature suggests that social support is important for patients with facial disfigurement and they wish for support from friends and family (Konradsen et al, 2012; Parker et al, 2014; Henry et al, 2014; Moore et al, 2014; Threader and McCormack, 2016). Feber (2000) summarised a number of studies and, from these, argued that dramatic changes to life and appearance are mitigated by supportive friends and family. This is supported by Lang et al (2013) but they also hastened to add that patients with HNC found support from peers as well, which is noted in the findings, suggesting this is a significant issue for those with disfigurement because of HNC surgery (Parker et al, 2014; Moore, et al, 2014; Threader and McCormack, 2016). However, Deno et al (2012) argued that friends and family provide different types of support, which mitigate social distress to different extents. Ultimately, social support is recognised as being important in helping patients adjust to disfigurement.
Bowers (2008) suggested that patients use people who are closest to them as their initial gauge to their disfigurement, which may explain that, while participants wanted support, they were fearful of their reactions (Konradsen et al, 2012; Henry et al, 2014). Anxiety and phobic reactions to social situations are also common in people with facial disfigurements (Newell and Marks, 2000). This anxiety was noted within the findings, mostly in the context of the reactions of others.
It was suggested that social rehabilitation is helpful for patients with disfigurement (Mitchell et al, 2012). Feber (2000) suggested that graded exposure is a useful part of reintegration, a finding mirrored in this review (Semple et al, 2008; Konradsen et al, 2012). In addition, a need for social interactions to be normal and not too overprotective has been highlighted (Semple et al, 2008; Henry et al, 2014); termed ‘benign neglect’ (Bonanno and Esmaeli, 2012), this helps reduce stigma and therefore improves social integration.
Implications for practice
Reviewing the literature has raised issues that could have implications for practice regarding ensuring that those with facial disfigurement because of HNC surgery can achieve a good QoL. Because of the increasing focus on QoL in survivorship of cancer, rehabilitation is becoming increasingly important (Macmillan Cancer Support, Department of Health and NHS Improvement, 2013). Rehabilitation focusing on psychological and social components, as well as functioning, has been suggested (Mitchell et al, 2012) and has been shown to improve QoL (Nagy et al, 2014). Therefore, making sure these patients have access to rehabilitation is an important practice issue.
Even with ensuring access to rehabilitation, nurses can play a number of roles to make sure patients receive suitable support. Feber (2000) suggests that health professionals should be able to use QoL assessment tools to help identify patients who may be significantly negatively affected by diagnosis and treatment and therefore need greater support.
It is also felt that nurses need to be able to provide comprehensive, accurate and appropriate information, as discussed in the findings above, which helps patients make accurate choices and therefore improves QoL. Bowers (2008) noted that providing information before surgery is a vital role for nurses. In addition to this, Bowers (2008) commented that nurses are best placed to deliver interventions. Psychosocial interventions carried out by nurses are shown to improve QoL (van der Meulen et al, 2014). Research also supports patients' desire to have well-trained health professionals supporting them with their appearance concerns (Rumsey et al, 2004). Bowers (2008) took this one step further, suggesting nurses should support close friends and family to ensure that they are able to support the patient, particularly in coming to terms with their facial disfigurement.
Ideally, nurses should be able to undertake the duties of identifying patients who may be at risk of poor QoL, as well as providing information and supporting patients, family and close friends as suggested above. However, there are significant barriers to this. One of the findings by Konradsen et al (2009) was that patients felt unable to raise concerns regarding their disfigurement to nurses. Additionally, nurses can feel unable to discuss appearance concerns with patients (Rumsey et al, 2004; Konradsen et al, 2009). Rumsey et al (2004) suggested this was because of a lack of training on appearance; this is further supported by Clarke and Cooper (2001), who suggested training is required for nurses who specialise in disfigurement to enable them to provide psychosocial interventions.
These factors require addressing, possibly through nurse training, to ensure both specialist and ward nurses who care for and support these patients both immediately after surgery and in the long term are able to provide appropriate guidance and interventions to them. This in turn will enable those who have become facially disfigured because of HNC surgery to go on to have a good QoL.
Conclusion
This literature review aimed to understand the experiences of patients who become facially disfigured because of surgery for HNC, and how these factors affect their QoL. The shifting focus towards QoL throughout treatment and into survivorship in turn influences the care nurses provide to patients with facial disfigurement.
Nurses need to be suitably trained to be able to deliver interventions themselves, whether they are specialist nurses supporting patients throughout their cancer treatment, or ward nurses who may come into contact with patients in the immediate aftermath of their life-changing surgery.