Title. Cancer survivorship: evolutionary concept analysis
Aim. This paper is a report of a concept analysis of cancer survivorship in adults.
Background. The concept of cancer survivorship appears frequently in cross-discipline literature but does not seem to have any precise definition or meaning. Substantive research into the experience of surviving cancer is long overdue. However, if a concept has not been clearly defined any theoretical work based on that concept will also be unclear.
Data sources. The analysis was based on literature published in English between 1994 and 2006 (n =43) and seminal work in the field.
Review methods. Rodgers’ method of evolutionary concept analysis was used, allowing the concept to be viewed within a sociocultural and temporal context and capturing both lay and emic perspectives.
Results. Cancer survivorship in adults is a process beginning at diagnosis and involving uncertainty. It is a life-changing experience with a duality of positive and negative aspects, and is unique to the individual but has some universality. The primary antecedent is a cancer diagnosis and the consequences can be divided into four main themes: physical health, psychological health, social health and spiritual health.
Conclusion. Surviving cancer is now an established reality for millions of people worldwide. Nurses can benefit from a deeper understanding of the patient experience, both theoretically and in practice. Clarification of a concept provides a heuristic for further inquiry and a basis for theory generation.
Cancer survivorship appears as an emerging but immature concept as yet unsupported by any theoretical framework. Some aspects of surviving cancer, particularly after an episode of critical illness during diagnosis or treatment, fit the theoretical framework of posttraumatic stress disorder. However, this does not wholly allow for the sometimes neutral or even positive aspects of the survivorship experience (Alter et al. 1996, McGarth 1999, Little et al. 2000, Mellon et al. 2006). Therefore, an initial concept analysis is an essential heuristic to generate appropriate theory.
Increasing numbers of people are being successfully treated for cancer (Richards et al. 2000, Brenner 2002, Kmietowicz 2004, Ganz 2005). Worldwide, 54·5 million people have been diagnosed with cancer in the last 5 years and 45%, or 24·6 million, of these people will be alive after 5 years (Cancer Research UK 2007); this places a significant health burden on any economy. It is important, nevertheless, that saving lives should not be a statistical exercise. These lives need to be valued and specifically catered for. Carter (1989) suggests that if as healthcare professionals, we are to prepare people for survivorship then we must have insight into what surviving cancer involves.
Rodgers and Knafl (2000) describe concepts as the building blocks of all theory, and concept analysis has been described as a process of ‘synthesizing existing views of a concept and distinguishing it from other concepts’ (Knafl & Deatrick 2000 p. 39). Rodgers (2000a, 2000b) method of evolutionary concept analysis was selected for the present concept analysis because of the emphasis placed on inductive inquiry and rigorous analysis compared with other methods. The emphasis is on an inductive discovery approach concentrating on the collection and analysis of raw data and not on the construction of cases, as advocated by other methods (Walker & Avant 2005). In this approach the philosophical theories of essentialism and absolutism are rejected. Also, in a fundamental departure from other methods, Rodgers (2000a, 2000b) allows the concept to be viewed within a sociocultural and disciplinary context. This is further enhanced by capturing a lay and emic perspective of the concept through using popular literature. In accordance with a cycle of continuing development, the analysis does not lead to a statement of what the concept is or is not, and there are no static or timeless features; rather, the emphasis is on rigorous and systematic study.
This method involves the following six primary activities, this is not a linear process but an iterative one and some activities may be carried out simultaneously (Figure 1).
CINAHL, British Nursing Index, Medline and Psychoinfo were used, focusing the survivors of adult cancers. Key words entered were cancer, survivors, survivorship and research. Literature published in English from 1994 until 2006 was chosen to reflect contemporary treatment regimens and the resulting increased survival rates; this yielded 218 publications. Other documents found through the reference lists of included papers were also considered. These were grouped by year of publication and, as the number of papers was high, selection was performed using a random number table (Rodgers 2000a). A purposive selection of work considered to be classic or seminal in the field was also included (n =7); therefore papers dated from 1975 were included in the final analysis. The use of lay literature is deemed vital in bridging the gap between the different perspectives of providers and recipients of care. The popular media is influential in the forming of public opinions on all health-related topics (Miller et al. 2000); therefore, a sample of autobiographical works was included (n =4). These were chosen from a list of books in this genre using a random number table. At least 30 papers are considered necessary to undertake a rigorous concept analysis (Rodgers 2000a); the final yield was 43 articles and books. The process was audited by an independent researcher to ensure neutrality and credibility and to reduce the potential for bias (Lincoln & Guba 1985, Rodgers & Cowles 1993, Rodgers 2000a).
Rodgers (2000a, 2000b) method of concept analysis is based on the philosophical position that concepts are dynamic and evolve over time. The most important attainment of concept analysis is the identification of the attributes of the concept. These attributes represent the real definition; this is as opposed to a dictionary definition which merely substitutes one synonym for another.
During the data management phase all included items were searched to identify data relevant to the attributes of the concept and to establish its situational, temporal, sociocultural and disciplinary context. All pertinent statements found constituted relevant data. This included the use of the term survivorship in other contexts.
Surrogate terms and related concepts were also identified in the literature during this phase. There may be many ways of expressing the same concept; these are classed as surrogate terms and may surface before any formal analysis has taken place. Related concepts bear some relation to the concept being analysed but do not share the same set of attributes.
To facilitate data analysis, a data management scheme was devised. All the included items were read through once to allow immersion in the literature, and word labels were used to identify the preliminary attributes. During the second reading, verbatim passages and their sources were noted, using coded sheets specific to the preliminary attributes. Notes were made of the antecedents, consequences, related concepts and surrogate terms in the same way.
Analysis was carried out using a standard thematic procedure, with emphasis on the cultural and temporal context, consistent with Rodgers’ evolutionary method (Rodgers 2000a). Each category of data, attributes, contextual information and references were examined separately and major themes were identified. Initially 17 attributes were identified. Data were continually organized and reorganized until comprehensive and relevant descriptions were generated. This procedure was not applied to surrogate terms or related concepts.
Ultimately not all data were relevant; however, any contrary statements were included as they offered important insights into the concept. As the data became more organized, labels were identified to describe the significant characteristics of the concept and the analysis took on a more theoretical focus. The final analysis allowed for groupings of themes and the emergence of the five ultimate attributes (n =5):
• process beginning at diagnosis;
• life-changing experience;
• duality of positive and negative aspects;
• individual experience with universality.
This analysis was reviewed by a researcher with experience of this model of concept analysis. Each characteristic was examined to determine agreement or disagreement across disciplines, change over time, current status, its emerging use and future development prospects, as shown in Table 1. At this point in the investigation an exemplar or model case can be identified, but only if appropriate. Rodgers (2000a) suggests that the exemplar must be identified and not constructed to maintain neutrality. The ideal exemplar provides a generic or universal illustration of the concept. In this analysis, cancer was used as a generic term and any exemplars identified would involve a specific cancer diagnosis and therefore, introduce potential bias.
Table 1. Organization of data
Seasons of survival, acute, extended, permanent (Mullan 1985)
The thematic analysis process was monitored by a second researcher to ensure rigour and reduce potential bias by encouraging elucidation of all aspects of the study (Mays & Pope 1995). A reflective diary was kept throughout to record thought processes, perceptions and methodological decisions and allow for an effective audit trail (Rodgers & Cowles 1993).
The term survivorship first appeared in the medical literature in the 1960s with reference to life after myocardial infarction (Lew 1967). Historically, the concept of survival has been either associated with war and its atrocities or with the laws of nature (Daintith et al. 1988, p. 119, p. 395).
By the 1980s, the concept of survivorship had begun to appear in cancer-related literature. This took the form not only of biomedical survival, often measured in 5-year blocks, but also the idea of the individual’s psychosocial perspective (Shanfield 1980). Following the publication of Seasons of Survival by Mullan (1985), the idea of how the experience might affect someone holistically and evolve over time is first mooted. From then on, the concept begins to develop in the literature, although no definition is ever offered. The discrete effects of diagnosis, treatment and survival remain the primary concerns of authors in the professional literature; however by the 1990s there is a great deal of autobiographical work describing the whole experience of surviving cancer from the individual’s perspective. Nevertheless, there has been little progress in the conceptualization of cancer survivorship, despite the significant rise in the number of cancer survivors, and the term continues to be used interchangeably with related terms, such as ‘people living after a cancer diagnosis’.
Cancer is now classed as a chronic disease with physical and psychosocial sequelae (Aziz & Rowland 2003). The concept of cancer survivorship is a dynamic, emerging concept pertinent to all cancer care and may be defined as a process beginning at diagnosis and involving uncertainty. It is a life-changing experience, with a duality of positive and negative aspects unique to the individual experience but with universality.
The attributes of adult cancer survivorship are described below.
A process beginning at diagnosis
There is a lack of consensus in the literature as to when someone becomes a cancer survivor (Rendle 1997). Is it a continuous process, or do people gradually come to think of themselves as survivors (Rendle 1997, Dow et al. 1999, Little et al. 2000, Vachon 2001, Ganz 2005)? For some authors, the process begins at diagnosis (Mullan 1985, Dow 1990, Ferrell & Dow 1996, Breaden 1997, Little et al. 2000), but others suggest that a person must live for at least 5 years before being regarded as a survivor (Carter 1989, 1993). Until 1980, when Shanfield (1980) considered the psychological aspects of surviving cancer, there had been minimal systematic investigation into the topic in relation to adults. Most work had been limited to paediatric survivors reaching adulthood (Jaffe 1975). Shanfield (1980) concluded that the cancer experience was a permanent one, characterized by vivid memories of the illness and recovery period, coupled with an enduring sense of one’s own mortality and vulnerability. However, he concluded that this was consistent with surviving any serious illness and matched the findings of studies on adult development and transformations.
Interestingly, the lack of prominent signs of psychiatric symptoms and guilt was in sharp contrast to survivors of extreme situations such as the second world was Holocaust or the dropping of the atomic bomb on Hiroshima. Contrary to the idea of omnipresence, Killoran et al. (2002), in a study of long-term cancer survivors, found that nearly all the participants described the experience as ‘largely unremarkable’ (p. 209).
By 1985 Fitzhugh Mullan, a medical doctor diagnosed with anaplastic seminoma had written his seminal work ‘Seasons of Survival’, describing survivorship as beginning at diagnosis and continuing through three seasons: acute, extended and permanent. This framework was then supported by Carter (1989) in her review of research on the topic and adopted by the National Coalition for Cancer Survivorship in the United States of America as their membership criterion: a cancer survivor is ‘anyone with a history of cancer from the time of diagnosis and for the remainder of life’ (Leigh & Logan 1991, p. 571). The vast majority of subsequent work on cancer survivorship is either a development of Mullan’s work or bears testament to it.
Little et al. (2000) describe the state in which survivors live as ‘liminality’ (p. 502), from the Roman word limen describing a place between two living spaces. Cancer survivors pass through the space of illness but do not return to their world as it was before the illness. Dow (1990, 1991) also suggests that, as there is no moment of cure, surviving is a process without an endpoint. Surviving cancer is a lifelong journey (Pelusi 1997, Deimling et al. 2005).
If defined bio-medically, survivorship may mean the period after therapy ends, while, if using a specific timeframe, it may be classed as after 2, 5 or 10 years, or as a treatment outcome when cure is achieved (Leigh 1999). Carter (1993) went as far as to suggest a definition of 5 years after diagnosis without recurrence. However, some support groups take the view that it does not matter if there is recurrent or persistent disease: anyone living after a diagnosis is a survivor (Little et al. 2000).
Wallwork and Richardson (1994), DeMarco et al. (2004) and Picard et al. (2004) support the notion that cancer is a chronic disease and cancer survivorship a process. Some of personal accounts written also refer to the process. For example, Christine Piff of Let’s Face It, a United Kingdom campaigning organization, describes survival as ‘…taking each day at a time’ (2000, p. 64) and Carr (2004) states that ‘That’s what surviving cancer is about. Waiting, wondering’ (p. 2).
Whilst historically the literature supports the notion that surviving cancer is a process, it also draws attention to the importance of the actual words used to describe that process. For example, Carr (2004) calls it ‘linguistic limbo’ (p. 91). Survival associated with cancer may be seen as an oxymoron, but as medical science changes so must social attitudes (Breaden 1997, Leigh 1999, Little et al. 2000, Deimling et al. 2005). It can be seen as major scientific and social progress that the debate is even taking place (Leigh 2001). However, to find a term for life after a cancer diagnosis that satisfies all stakeholders may be a major linguistic challenge.
Armstrong (2001) describes having a ‘new sense of purpose’ (p. 156) and he felt that his role in life was as a cancer survivor, and not as a cyclist, to show just what could be performed. The search for meaning in life was first described by Frankl (1963). It is seen as a difficult task that is often only faced when one’s own mortality is confronted. It has, therefore, not surprisingly been explored with reference to cancer (Ersk & Ferrell 1994, Dirksen 1995, Pelusi 1997, Mellon et al. 2006, Meraviglia 2006). For some the change in role was significant, and the nurses who had cancer who featured in the phenomenological study by DeMarco et al. (2004) describe how they now needed to receive care instead of being caregivers. Mellon et al. (2006) describe the difference between male and female responses to surviving cancer, suggesting this may be linked to traditional roles.
The negative side of the life-changing experience is as powerful as the positive. Cancer can become the definition of self, and people experience secondary gains and appear to prolong the illness beyond normal parameters (Vachon 2001). Life after cancer can be so different from how it was before, and it appears that there is no right way to find the new normal and no researched model that people can follow (Auchincloss 1995, Pelusi 1997, Dow et al. 1999, Little et al. 2000).
The social implications of having had a cancer diagnosis are far reaching. New or existing intimate relationships can be affected by fertility issues or by permanent or perceived body image changes. The possibilities of not being able to forge new relationships are coupled with the fear, for some, of being unable to leave unsatisfactory ones (Auchincloss 1995). Both Little et al. (2000) and DeMarco et al. (2004) highlight that, without adequate and appropriate support, this process of change can be overwhelming and alienating. A third way, however, is also described in the literature, and Breaden (1997) borrows the term ‘reluctant phoenixes’ (p. 982) to describe people who are ambivalent about their experience. Some describe it as a ‘non-issue’ (Vachon 2001, p. 281). On the whole, however, the literature supports the fact that cancer is an extreme experience that disrupts people’s lives and sense of identity (Little et al. 2000, Mellon et al. 2006).
In contrast, Little et al. (2000) suggest that surviving cancer may have a darker side and not be ‘an unqualified pleasure’ (p. 501). The negative aspects are mainly associated with medical and physical issues such as depression, fatigue, pain, dyspnoea, cognitive impairment, sterility and loss of sexual function (Ferrell et al. 1995, Leigh et al. 1995, Aziz & Rowland 2003, Dow 2003, Cheng et al. 2005, Mellon et al. 2006). In an ageing population, these effects can combine with comorbidities to create complex health problems (Deimling et al. 2005). Feelings of being flawed have haunted some women with gynaecological cancers for years (Auchincloss 1995). Fritz (2001), in her phenomenological study of three people with head and neck cancer, identified some deeply negative thoughts about lack of contribution to society and life not being worth living. The need to live a different life can also be interpreted as a negative aspect of surviving cancer.
Carr (2004) states that the lived experience of cancer is poorly understood, hence the title of her book ‘It’s Not Like That, Actually’. To illustrate the analogy of survival, one cancer survivor who had also been involved in the Vietnam War chose an inscription found as the troops evacuated the country; this read: ‘Those who were not here will never know how it was to have survived’ (Ferrell & Dow 1996 p. 77). Little et al. (2000) agree with this sense of unity putting description ‘beyond the scope of language’ (p. 502) to those who have not shared the experience. They also describe three universal elements common to survivors: first, the adhesiveness of the label ‘cancer patient’, often promoted by the medical follow-up regime; second, awareness of the body’s fallibility, creating suspicion about something innately trusted, coupled with a heightened awareness of their own mortality and, third, the knowledge that the individual has lived through an intense experience, unique to them.
Dow et al. (1999) conducted a qualitative study to describe the meaning of quality of life in cancer survivorship. The goal of their data analysis was to replicate 30 quality of life themes obtained from previous research with survivors of bone marrow transplant. This proved difficult, because of the diverse language used by the different groups and correlation could not be guaranteed. This highlights the common theme running through the literature that surviving cancer is a unique experience that will be rationalized by individuals in the context of their own lives, but that survival is also an overarching concept that only those who have ‘been there’ (Leigh & Logan 1991, p. 572) can begin to understand.
Antecedents are the event or phenomena that precede the concept. A diagnosis of cancer is the primary antecedent of cancer survivorship.
Consequences are what happen after an instance of a concept. The consequences of cancer survivorship are influenced by many factors and can be divided into four main themes: physical health, psychological health, social health and spiritual health (Dow et al. 1999).
For some, the psychological impact is huge and long lasting, outweighing any physical deficits – life is lived with the Damocles syndrome, whereby people are unable to enjoy the present for fear of recurrent disease in the future (Koocher & O’Malley 1981, Auchincloss 1995, Fritz 2001).
The attributes, antecedents and consequences of adult cancer survivorship can be considered a middle-range explanatory theory. Figure 2 illustrates the non-relational existence proposition known as cancer survivorship (Fawcett & Downs 1992).
Related concepts bear some relationship to the concept being analysed but they do not have the same precise set of attributes (Rodgers 2000a). Quality of life following diagnosis or treatment of cancer is the concept that appears most frequently in the literature (Dow et al. 1999); it does not, however, fully encompass the dynamic aspects of cancer survivorship.
The aim of the analysis was to investigate cancer survivorship generically. There were, however, some limitations to the exercise, despite the rigour of the process. As a result of the sampling method, some of the great volume of research concerning women with breast cancer may have excluded. Consideration of the lay literature could also have been enhanced by the inclusion of web-based material, coupled with work published in languages other than English.
Implicit in concept development is the identification of further areas of research to ensure the continued evolution of the concept and the construction of apposite theory or nursing diagnosis (Fawcett & Downs 1992, McKenna 1997, Cowles & Rodgers 2000, Rodgers 2000a). Newman’s (1994) theory of Health as Expanding Consciousness can be used to situate this concept. The process from cancer diagnosis (disease) through treatment to cancer survivorship (health) allows for a synthesized view incorporating disease as a meaningful aspect of health. This is appropriate to cancer as a chronic disease.
Specific inquiry is needed into how survival is altered both medically and psycho-socially by prescribed interventions such as care plans or end of treatment interviews. This research should involve both patients and carers and capitalize on the plethora of data available in the 21st century. Further inquiry into how culture or religious affiliation affects the concept or the individual attributes is also required. The attributes identified in this analysis matched closely those identified by Farmer and Smith (2002), who undertook a similar investigation with African-American women affected by breast cancer (Table 2); this demonstrates the need for research corroboration and theory generation.
Table 2. Antecedent, consequences and attributes of cancer survivorship
Physical Psychosocial Spiritual Socioeconomic
Complex Individualized Process Unique Relational Dynamic
Leigh (1999) goes as far as to suggest that, once the concept of cancer survivorship is viewed as ‘a continuum’ (p. 2), this should affect all aspects of cancer care or in fact become cancer care by providing a conceptual framework for all future service provision. We can no longer ‘save people from drowning…(and then)…leave them on the dock to cough and splutter on their own in the belief we have performed all we can’ (Mullan 1985, p 273). Thus, all healthcare interventions in the 21st century should have the long-term interests of patients as the focal point. Nurses could be forgiven for thinking that their responsibilities only lay within the workplace; however, to influence their practice and encourage them to think about the long-term needs of their patients, survivorship must be on the agenda. If all cancer nursing education programmes included a focus on the concept of cancer survivorship, the philosophical underpinning of care could be influenced and developed alongside a framework for all cancer services.
In practice settings, importance needs to be attached to hearing patients’ stories. Issues associated with the physical, psychological, social and spiritual health of patients could be identified and then dealt with in a constructive manner. The danger of discharging patients without addressing matters that are important to them is that they will continually re-present with symptoms that are better addressed outside the acute medical setting.
Pelusi (1997) suggests the introduction of ‘exit interviews’ (p. 1350) to establish the individual needs of patients once the acute treatment phase is over, and to reduce the well-documented follow-up anxiety. The American Society of Clinical Oncologists are developing a survivorship care plan to allow professionals and patients to work together towards the goal of long-term, high quality and appropriate care because ‘Patient care does not end when treatment ends’ (Institute of Medicine 2006, p. 187).
Clinic visits for people with a chronic disease should not be anxiety provoking; instead, the clinic should act as an educational and supportive resource and be led by professionals skilled in addressing the relevant topics (Brada 1995, Charles et al. 1996, MacBride & Whyte 1998). Resources could take the form of educational courses adapted to the needs of different populations (Van der Molen & Hutchison 1999) and offer general lifestyle and health promotional advice. Surviving cancer is now an established reality for millions of people worldwide, and the opportunity presents for nurses to take a leadership role in the future of cancer care by influencing theory, research and practice around the dynamic concept of survivorship (Brada 1995, MacBride & Whyte 1998).
I would like to acknowledge my university tutor, Karen Rawlings-Anderson from City University, London, for her critical review and contribution to this paper.
ND was responsible for the study conception, design and drafting of the manuscript, performed the data collection and data analysis, made critical revisions to the paper for important intellectual content and provided administrative, technical or material support.