CONCEPT ANALYSIS
Survivor in the cancer context: a concept analysis Megan Hebdon, Karen Foli & Sara McComb Accepted for publication 30 January 2015
Correspondence to M. Hebdon: e-mail: [email protected] Megan Hebdon RN FNP-c Doctor of Nursing Practice Student Purdue University School of Nursing and Family Nurse Practitioner, Indiana University Health Arnett Internal Medicine Group, West Lafayette, Indiana, USA Karen Foli PhD RN Assistant Professor Purdue University School of Nursing, West Lafayette, Indiana, USA Sara McComb PhD Associate Professor Purdue University Schools of Nursing and Industrial Engineering, West Lafayette, Indiana, USA
H E B D O N M . , F O L I K . & M C C O M B S . ( 2 0 1 5 ) Survivor in the cancer context: a concept analysis. Journal of Advanced Nursing 71(8), 1774–1786. doi: 10.1111/ jan.12646
Abstract Aim. The aim of this analysis was to define survivor in the cancer context. Background. Cancer survivor has been used in the cancer lexicon, but may not represent the individuals it defines. Design. This concept analysis was completed according to Walker and Avant’s method. Data sources. PubMed, PsychInfo, CINAHL, JSTOR, Google and medical and public health websites. Review methods. Thirty sources from multiple disciplines, published between 1987–2013, were analysed for recurrent themes and conceptual meaning. Critical attributes, antecedents and consequences were extrapolated. Model, related and contrary cases were developed based on an amalgamation of clinical observations. Illegitimate, borderline and invented cases were excluded for this reason. Results. Survivor in the cancer context is an individual with a history of malignancy, who has lived through a personalized challenge and has ongoing positive and negative consequences. Not all cancer survivors would identify themselves using the term survivor. Conclusions. This contributes to the paradigm shift of cancer as a chronic disease as it establishes the unique nature of the cancer experience while highlighting the long-term concerns related to this set of diseases. The Theory of Uncertainty in Illness provides a framework to understand the individualized nature of being a cancer survivor. Nursing research and practice should address the personal experiences of cancer survivors while still focusing on general survivorship needs. Keywords: chronic disease, concept analysis, individual differences, neoplasm, nurses, stressful events, survivor, uncertainty
Introduction Globally, an estimated 170 million years of healthy life were lost because of cancer in 2008. In fact, cancer is a leading cause of disease worldwide with approximately
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325 million individuals still living up to 5 years past their cancer diagnosis (Cancer Research UK 2014). In the United States in 2012, nearly 137 million individuals were living with a history of cancer (American Cancer Society 2014). With early diagnosis and advances in treatment modalities,
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Why is this research or review needed? Research has suggested that all individuals with a history of cancer may not identify with the term survivor due to the positive and negative connotations associated with this term. Other concept analyses have focused on cancer survivors, cancer survivorship, or survivorship in chronic illness, but there is a need for a cross-disciplinary understanding of survivor in the cancer context.
What are the key findings? A survivor in the cancer context is an individual who has
Concept analysis of cancer survivor
This definition of cancer survivor has been echoed by many institutions and even extended to the inclusion of caregivers, friends and family as survivors due to their role in the survivorship experience (Centers for Disease Control & Prevention 2004, National Cancer Institute (NCI) 2012). Yet, the prevailing usage of the term ‘cancer survivor’ is for those who have a personal history of cancer, especially those who have completed active treatment (NCI 2012). Clarity of this concept, therefore, is needed, particularly as it relates to how and when this term is applied in the cancer context and its ability to capture the experiences of individuals living with a history of cancer.
a diagnosis of malignancy, has lived through a challenging experience, has positive and negative consequences related to their disease and whose experience is individualized. Survivor is the individual experience of a person living with a history of cancer and survivorship denotes the general needs of individuals after primary cancer treatment completion. With the personal nature of being a cancer survivor, all individuals who might be defined by this term do not identify with it.
How should the findings be used to influence policy/ practice/research/education? Future researchers should address the personal nature of being a cancer survivor and the general needs of the cancer survivorship care period. Nurses may use the Theory of Uncertainty in Illness in addressing the needs of cancer survivors in practice and research to understand the personal context of their experience.
this number is projected to increase to 18 million by 2022 (De Moor et al. 2013). The cancer control continuum is a term that has been used from the mid-1970s to describe the phases of cancer and its treatment. Survivorship was a more recent addition to this continuum due to the growing population of cancer survivors (National Cancer Institute 2011). Fitzhugh Mullan, a physician and cancer survivor, was influential in garnering attention for the survivorship phase of cancer and cancer survivors with his article ‘Seasons of Survival’. In this, he states: Survival is a much more useful concept, because it is a generic idea that applies to everyone diagnosed as having cancer, regardless of the course of the illness. Survival, in fact, begins at the point of diagnosis, because that is the time when patients are forced to confront their own mortality and begin to make adjustments that will be part of their immediate and to some extent, long-term future (Mullan 1985, p. 271).
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Background The term survivor has become part of the lexicon in the cancer context. Nevertheless, the concept of survivor is not consistently applied nor is it distinguished from other aspects of cancer care. For instance, overlap between the terms cancer survivor and survivorship occurs frequently throughout the literature (Davies 2013). These terms denote very different phenomena as will be discussed further in this concept analysis. Previous efforts have been undertaken to address the concepts of cancer survivor and survivorship. These analyses have focused on paediatric and young adult cancer survivors (Shepherd & Woodgate 2010), African-American breast cancer survivors (Farmer & Smith 2002), survivorship in the context of chronic illness (Peck 2008) and general cancer survivorship (Doyle 2008). The first two contribute to our understanding of cancer survivorship in the context of specific patient populations. The second two provide clarity around the concept of survivorship. Still missing, however, is a broader understanding of the term survivor, particularly as it relates to cancer. Thus, the primary purpose of this concept analysis is to draw on multiple disciplines to describe the parameters of the term ‘survivor’ in the cancer context. Mullan (1985) provides compelling rationale for considering survival in the cancer context. This term, however, has become historically, culturally, emotionally and politically charged and should not be applied casually (Bell & Ristovski-Slijepcevic 2012). Its genesis may derive from President Nixon’s declaration of war on cancer in the 1970s (Surveillance Epidemiology & End Results 2014). Since that time an undercurrent of battle themes has been prevalent in the research, diagnosis and treatment of cancer. Indeed, a survivor is viewed in terms of ‘winning the fight’, when for many individuals with cancer this is not the case (Bell & Ristovski-Slijepcevic 2012). Cancer survivors are often left with long-term side effects and late effects of cancer and its treatment. Rather than 1775
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being victors over their disease, they continue a lifelong struggle due to their cancer diagnosis (Centers for Disease Control & Prevention 2004). The transition survivors experience from active treatment to follow-up care may be a time of uncertainty where the illness meaning they construct is based on factors such as ambiguity of their illness state, treatment complexity, information gaps and an unpredictable disease course as described in Mishel’s Theory of Uncertainty in Illness (Mishel 1988). Thus, the victorious characterization of cancer survivors may be misleading for the general public, because cancer is a set of diseases with complicated environmental and genetic influences (Surveillance Epidemiology & End Results 2014). A more appropriate war analogy may be the war in Vietnam or the war on terror, where victory may not come at a single point in time and multiple battles are fought resulting in an ongoing series of positive and negative consequences. The secondary purpose of this concept analysis, therefore, is to consider whether ‘survivor’ is a relevant term for those who have a history of cancer.
Data sources
malignancy, a group of diseases where abnormal cells divide without control and can invade nearby tissues or spread through the blood and lymph systems (NCI undated). Disease groups included in the definition of malignancy are: carcinoma, sarcoma, leukaemia, lymphoma and central nervous system cancers (NCI undated).
Literature search strategy A literature search was conducted using the term ‘survivor’ in the following databases: PubMed, CINAHL, PsychInfo and JSTOR. Articles from multiple disciplines published between 1987–2013 were reviewed for their relevance to this analysis including: medicine; nursing; psychology; insurance; mathematics; and English. Google searches were also completed using the terms ‘survivor’ and ‘survivor definition’, which yielded dictionary definitions and results from popular media including television and music. A search was conducted using the term ‘survivor’ in medical and public health web sites and the results were also reviewed for pertinent material. The first fifty hits on each site were reviewed for inclusion.
Concept analysis method
Data analysis
This concept analysis followed Walker and Avant (2010) approach, which includes the eight following steps: concept selection; determination of aims and purposes of the analysis; identification of all uses of the concept; determination of defining attributes; construction of a model case; construction of borderline, related, contrary, invented and illegitimate cases; identification of antecedents and consequences; and definition of empirical referents (Chinn & Kramer 2011). The only change to this approach for this discussion will be the lack of borderline, invented and illegitimate cases. The composite cases presented were developed based on actual clinical observation and are representative of an amalgam of observations with exemplar individual cases reported. As there were no observed cases to meet the criteria for borderline, invented, or illegitimate cases, these cases were excluded.
A total of 30 sources were analysed and vetted for inclusion in this analysis by one author (MH). Data were then organized in Table A1 (Appendix A). Sources were selected based on their inclusion of the term ‘survivor’, were published in English and if they presented ‘survivor’ in a different perspective or setting than previously selected sources. As a team, themes were then extracted and agreed on using Carper’s ways of knowing, including aesthetic knowing, empiric knowing, ethical knowing and personal knowing (Chinn & Kramer 2011). Recurrent themes were noted and conceptual meaning was induced from these themes. Critical attributes of the concept were based on the redundant meanings from the sources. Antecedents and consequences were formulated based on the literature and relationships to the critical attributes.
Results Concept analysis context Cancer is the context where this concept analysis of survivor is embedded. Cancer is a group of diseases, rather than a singular entity and may be characterized by a solid tumour or by abnormal cell proliferation in the hematologic and lymphatic systems (NCI undated). The most descriptive term of the cancer context for this paper is the term 1776
Uses of the concept There are multiple uses and contexts for the term survivor. Table A1 (Appendix A) outlines the concept of survivor among varying disciplines and populations. In the Pubmed search alone, articles covered survivors of cardiac events, stroke, cancer, abuse, disaster and traumatic brain injury © 2015 John Wiley & Sons Ltd
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(PubMed n.d.). The root term for survivor is ‘survive’, which means to remain alive and functional and to persevere. Survive has Middle English, French and Latin roots. The Latin prefix ‘super’ means above or surpassing and ‘vivere’ means to live (The Free Dictionary 2013, Empire.net n.d.). The recurrent theme among all the sources is that a survivor is a person or entity who survives adversity or elimination. In sources relevant to individuals, the survivor is one who has lived through something traumatic, difficult, or challenging, whether illness, disaster or trauma (Myers et al. 1987, Arrighi & Picciotto 1994, Mishra & Spreitzer 1998, Travis 2002, Naples 2003, Nutkiewicz 2003, Kahan 2007, Lang 2007, Wlodarski 2007, Berry 2008, Institute of Medicine 2009, Thon 2009, World Health Organization 2010, Pierce 2011, Centers for Disease Control & Prevention 2012, Chambers et al. 2012, Kazanjian et al. 2012, Khan et al. 2012, Mayo Clinic 2012, Davies 2013, Garrett et al. 2013, Godwin et al. 2013, Graven et al. 2013, Ho & Lee 2013, Jones 2013, Kornhaber et al. 2013, Oxford Dictionaries 2013, National Cancer Institute n.d.a,b, Song Meanings n.d.). Positive and negative meanings for the term survivor were identified, highlighting both triumph and continued obstacles (National Cancer Institute n.d.a,b, Song Meanings n.d., Myers et al. 1987, Mishra & Spreitzer 1998, Naples 2003, Wlodarski 2007, Institute of Medicine 2009, World Health Organization 2010, Pierce 2011, Centers for Disease Control & Prevention 2012, Chambers et al. 2012, Kazanjian et al. 2012, Khan et al. 2012, Mayo Clinic 2012, Davies 2013, Garrett et al. 2013, Godwin et al. 2013, Graven et al. 2013, Ho & Lee 2013, Jones 2013, Kornhaber et al. 2013, Nutkiewicz 2003). From personal communications, a cancer survivor and his spouse noted that the greatest difficulties for an individual with cancer are often after cancer treatment (A. Thomas, personal communication, 6 December 2013; R. Thomas, personal communication, 6 December 2013). As noted previously, the themes were evaluated through Carper’s ways of knowing (Chinn & Kramer 2011). Empiric and personal knowing are particularly relevant in the meanings noted among the sources. In multiple sources, a focus on the personal experience of being a survivor was identified, rather than the collective norm of being a survivor (Mishra & Spreitzer 1998, Naples 2003, Nutkiewicz 2003, Chambers et al. 2012, Khan et al. 2012, Kornhaber et al. 2013, A. Thomas, personal communication, December 6, 2013, R. Thomas, personal communication, 6 December 2013). Some people may have been a survivor based on empiric terms, but did not feel that survivor was part of their identity (Chambers et al. 2012, Khan et al. 2012). Being a survivor in many sources resulted in © 2015 John Wiley & Sons Ltd
Concept analysis of cancer survivor
persistent trials and/or the need for support from external sources (Myers et al. 1987, Nutkiewicz 2003, Institute of Medicine 2009, World Health Organization 2010, Pierce 2011, Kazanjian et al. 2012, Mayo Clinic 2012, Davies 2013, Godwin et al. 2013, Graven et al. 2013, Ho & Lee 2013, Jones 2013, Kornhaber et al. 2013). Based on these convergent meanings of survivor, a survivor is defined herein as an individual who lives through a difficult experience, but has ongoing positive and negative consequences related to this experience that are specific to each survivor. In other words, individuals may face the same challenges, but external and internal factors influence the individual meaning of the experience and the way the individual moves forward. This definition is applicable in the cancer context with the addition of a history of malignancy. In terms of cancer, survivor is distinct from survivorship, with the survivor being an individual and survivorship being the ongoing healthcare needs, such as surveillance and treatment of late effects, of an individual through the end of life (Kazanjian et al. 2012, National Cancer Institute n.d.b).
Critical attributes The critical attributes of a concept are those ideas that distinctly and concisely describe the conceptual meaning. All of these attributes must be present for a phenomenon to qualify as an example of the concept of interest (Chinn & Kramer 2011). The critical attributes for cancer survivor lie fundamentally in the term survivor. A simple attribute for cancer survivor would be ‘living with a history of malignancy’, but more complex attributes are found in the term survivor. Hence, a more comprehensive list of critical attributes of a survivor is an individual who: (a) is living with a history of malignancy; (b) has lived through a difficult experience such as cancer treatment; (c) has been impacted in positive and negative ways by the experience; (d) is in the follow-up phase of their cancer treatment; and (e) whose experience is personal and contextual.
Antecedents and consequences Antecedents and consequences were identified based on the critical attributes noted above. Antecedents are experiences that would come before the concept of interest (Chinn & Kramer 2011). Antecedents for cancer survivor would be the diagnosis of cancer, the treatment of cancer and being alive. Consequences are events that follow the concept of interest (Chinn & Kramer 2011). From the sources discussed in this analysis, it is clear that a cancer survivor does 1777
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not survive unaffected. They have ongoing physical, emotional, financial and social challenges that may require support and/or medical intervention. Many of the sources indicate the requirement of support from external sources. There are also the positive outcomes, such as improved self-advocacy, sense of well-being and the victory of overcoming a challenge.
Empirical referents Empirical referents are specific tools or measurements that might be used in a research study. Empirical referents for cancer survivor address some of the dimensions of cancer survivor: cancer diagnosis, living person, difficult experience (i.e. trauma, cancer treatment), follow-up care (i.e. resources utilization, surveillance and screening activities) emotional challenges (i.e. anxiety or depression), physical challenges (i.e. disability, health-related quality of life), social challenges (i.e. employment status, relationships), social support (i.e. friends, family, medical providers), medical intervention (i.e. number of specialty referrals, number of medications), self-advocacy (self-advocacy), sense of well-being (i.e. self-efficacy, happiness) and overcoming challenges (resilience). The definition in this analysis indicates that a cancer survivor is not only an individual who has lived through the challenge of a cancer diagnosis, but has an individualized cancer experience with positive and negative consequences. These consequences may be evaluated by measures such as the following: the Hospital Anxiety and Depression Scale for emotional challenges, the Short Form 12 for healthrelated quality of life, Quality of Relationships Inventory for social challenges, the Social Support Questionnaire for social support and self-reported healthcare utilization for medical intervention, Cancer Behavior Inventory-Brief for self-efficacy, Authentic Happiness Inventory Questionnaire for happiness and Resilience Scale for overcoming adversity (Sarason et al. 1983, Zigmond & Snaith 1983, Pierce et al. 1991, Heitzman et al. 2001, Ahern et al. 2006, University of Pennsylvania 2006, Ansah & Powell-Jackson 2013, SF36.org n.d.). Figure A1 illustrates the relationship between the critical attributes, antecedents, consequences and empirical referents of cancer survivor.
Case examples Model case RL is a 52 year-old female who was diagnosed with colon cancer at the age of 50 after a screening colonoscopy. She 1778
had a significant amount of fear at the time of her diagnosis due to family members who had died from cancer. RL was treated with colon resection and chemotherapy. Since then, she has followed up with her primary care provider and medical oncologist for her CT scans and carcinoembryonic antigen (CEA) levels, she has managed her multiple co-morbid conditions and she continues to work as an elementary school teacher. She has experienced effects related to her cancer and its treatment, including bowel and sexual dysfunction, depression and cognitive impairment. She receives medical intervention for these concerns with biofeedback, counselling and anti-depressants. She is confident in the cancer treatment she received, but has ongoing concerns about recurrence. She relies on the support of her family, especially her spouse and her healthcare providers. She plans to continue living life, knowing she will die of something, if not the cancer. The above is a model case of a cancer survivor, as RL was diagnosed with a malignancy, lived through treatment and is now receiving follow-up care. She continues to deal with the late effects related to her cancer and treatment, but also lives her life. Her experience with cancer was affected by her personal experience with family members with cancer. She accesses external sources of support in coping with her cancer and related concerns.
Related case BA is a 28-year-old female with a family history of breast cancer. Her mother died at the age of 42 and tested positive for BRCA-1 and BRCA-2. Both of her mother’s sisters were also diagnosed with breast cancer, but are still living. BA received the news that she is positive for the BRCA-1 and BRCA-2 gene. BA chose to have a prophylactic bilateral mastectomy followed by reconstructive surgery. Due to her risk for cancer, she eats well, exercises, avoids tobacco and limits her alcohol intake. She hopes to beat any potential cancer before it has a chance to take hold. She wants to live past 40 and be able to meet her grandchildren. She is motivated to be healthy for her two children and her husband. She is supported by her husband and medical providers in her decisions about her care. She occasionally expresses fears about the future, especially about the risk of ovarian cancer due to her genetic risk. BA is an example of a related case, as she was not diagnosed with a malignancy, but had the potential for developing a malignancy. She does exhibit attributes of a survivor by undergoing treatment for cancer prophylaxis, living through treatment, engaging in positive behaviours due to © 2015 John Wiley & Sons Ltd
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her risk for cancer, having fears due to her cancer risk and relying on external support sources.
Contrary case GR, a 76-year-old man, presented to the emergency room with a cough and shortness of breath that had been increasing in severity over the past 2 weeks. A chest x-ray showed a pleural effusion suspicious for pulmonary malignancy. After chest tube drainage and pathology reports demonstrated no evidence of malignancy, the patient was treated for acute pneumonia in the hospital. Rather than expressing relief to his family that he did not have cancer, he continued to discuss fears related to a diagnosis of cancer. Two days after being admitted to the hospital he was being prepared for discharge due to stabilization of his white blood cell count and clinical response to antibiotic therapy. As the nurse came into the room to give discharge education, he was found in cardiac arrest. A code was called, he was resuscitated and placed on life support. After 24 hours, his family removed life support per his wishes and he died a few hours later. GR is an example of a contrary case because he did not exhibit any of the critical attributes of a survivor in the cancer context. He did not have a malignancy, so was not treated for this condition and did not access support for his illness. It is unknown whether there were positive and negative consequences of his experience as he did not express these factors before his death. In fact, he seemed in denial regarding the fact that he did not have cancer. He did not have ongoing needs, due to his unexpected death.
Discussion Based on this analysis, cancer survivor implies more than just an individual who is living with a history of cancer. The accepted views of triumph and overcoming that may be communicated with the term survivor do not apply to all those who, by definition, are considered cancer survivors (Bell & Ristovski-Slijepcevic 2012). The extrapolated meaning of cancer survivor in this analysis includes the diversity of personal experiences, both positive and negative, that individuals living with cancer may encounter. This analysis embraces what Arthur W. Frank discusses in The Wounded Storyteller about the need for patients to restructure and acclimate to their postillness world (Frank 1997). The definition of cancer survivor in this analysis contributes to the paradigm shift of cancer as a chronic disease rather than the acute, life-threatening illness it was in the past. Chronic disease as defined by the Center for © 2015 John Wiley & Sons Ltd
Concept analysis of cancer survivor
Managing Chronic Disease is a long-lasting condition that can be controlled, but not cured (Center for Managing Chronic Disease 2011, para 1). In cancer research and treatment, the word cure is often used. The American Cancer Society (2013) discusses cancer as a chronic disease, but in terms of an individual who continues on therapy until the end of life to keep their cancer stabilized. Yet, the World Health Organization and the Centers for Disease Control and Prevention list cancer as a chronic disease with suggestions for integrated prevention and health promotion (Centers for Disease Control & Prevention 2013, World Health Organization 2014). The definition of chronic disease that this concept analysis attempts to address is the idea of a chronic disease continuum. No two chronic diseases are alike just as no two individuals are completely alike. There are key features of chronic disease including: acute exacerbations, chronic management with prevention and treatment strategies, variability in disease expression (i.e. insulin resistance and gestational diabetes in Type II diabetes) and long-standing consequences related to the diagnosis or treatment. For some with a cancer diagnosis, they may achieve remission with one short-term treatment modality, while others may continue on treatment for the remainder of their life. Even for those who are in remission, as described in this analysis, there are ongoing treatment and prevention needs and consequences from cancer and its treatment. This idea of cancer as a chronic illness aligns with Merle Mishel’s Theory of Uncertainty in Illness where a cancer survivor’s uncertainty about their disease trajectory may lead to either positive or negative coping strategies (Mishel 1988). In Mishel’s theory and in this analysis, those with chronic diseases such as cancer have individualized experience influenced by multiple factors including social support, prior life events, healthcare provider communication and existing needs or challenges (Mishel 1988). Mckenzie and Crouch (2004) aptly describe this uncertainty survivors face due to fear of recurrence. This fear engenders the perception of being at higher risk than others resulting in interpersonal discordance. Understanding this variability in experience and the potential for uncertainty provides nurses with an opportunity to extend support and resources to those who have a history of cancer. For instance, due to the medical and psychosocial consequences of being a cancer survivor, they may require ongoing support through social, medical and community resources (Centers for Disease Control & Prevention 2004). Ganz (2011) has identified the three P’s of cancer survivorship care which focus on palliation of symptoms, prevention of recurrence and late effects and promotion of wellness. Focusing survivorship 1779
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care on these principles may prevent gaps in care. Nurses must also acknowledge that all patients may not want to be considered under the umbrella of ‘cancer survivor’ due to the positive or negative social connotations attached to this term. Taking the time to understand the individual’s perspective of their cancer and their life after cancer can guide the nurse’s care approach.
the usage of different terms to identify individuals with a history of cancer, or it may lead to more intentional use of the term cancer survivor. Specifically for nurses, research on cancer survivor needs grounded in the Theory of Uncertainty in Illness would lead to interventions that might decrease the potential psychological and functional burdens of this chronic illness.
Limitations
Funding
With the approach of this analysis there are several potential limitations of this analysis including the broad nature of the data analysis, the analysis of survivor alone rather than combined with the term cancer and the use of less recent sources. The data were analysed across disciplines to obtain an encompassing view of the term survivor, but this may affect the use of the term’s application to the nursing discipline. Survivor alone was used in analysing the data and then was applied to the cancer context. An analysis of the terms cancer and survivor together might yield a more precise definition of this term. Finally, data from sources older than 10 years was used for this analysis. While this could potentially affect the currency of the definition found in this analysis, historical and cross-disciplinary meanings give a rich understanding of survivor.
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sector.
Conflict of interest No conflict of interest has been declared by the authors.
Author contributions All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
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Conclusion This concept analysis can inform research through understanding the key differences between the terms survivor and survivorship. Survivorship is the general term applied to the care period after active treatment completion (National Cancer Institute n.d.b). Cancer survivors are individuals with very personal experiences of their cancer diagnosis, treatment and life beyond cancer (Chambers et al. 2012, Khan et al. 2012, A. Thomas, personal communication, December 6, 2013, R. Thomas, personal communication, December 6, 2013). Research and public policy for cancer survivorship should continue to focus on the broad needs of patients during this period of care, but the treatment of specific cancer survivors should not be lost in the general understanding of survivorship. Research should address the individual nature of patient experiences and views of the term ‘cancer survivor’ across the spectrum of cancer diagnoses, stages of disease and social and cultural contexts. Available measures, such as those presented herein as empirical referents, may aid researchers as they work to ascertain the most critical and efficient approaches to provide individualized care in a directed, cost effective manner. At this point, cancer survivor may be the best term available, but further research may lead to 1780
substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.
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Concept analysis of cancer survivor recovery: a qualitative study. Disability and Rehabilitation 35(7), 578–585. Heitzman C.A., Merluzzi T.V., Jean-Pierre P., Roscoe J.A., Kirsh K.L. & Passik S.D. (2001) Assessing self-efficacy for coping with cancer: development and psychometric analysis of the brief version of the cancer behavior inventory. Psychooncology 10(3), 206–217. Ho N.S.P. & Lee T.M.C. (2013) Alexithymia: the story of a survivor of childhood traumatic brain surgery. Brain Injury 27 (10), 1199–1205. Institute of Medicine (2009) Search Results: Survivor. Retrieved from http://www.iom.edu/Global/Search.aspx?q=survivor&output =xml_no_dtd&client=iom_frontend&site=iom&proxyreload=1&ie= UTF-8&ulang=&ip=74.121.195.122&access=p&sort=date:D:L:d1& entqr=3&entqrm=0&start=10 on 18 November 2013. Jones M.W. (2013) Soldier, veteran, survivor. Therapy Today 24 (8), 1–4. Kahan S. (2007) Mathematical survivor. Math Horizons 14(3), 34–35. Kazanjian A., Smillie K., Howard A.F., Ward A. & Doll R. (2012) A structured approach to knowledge exchange: understanding the implementation of a cancer survivor program. European Journal of Oncology Nursing 16(4), 399–405. Khan N.F., Harrison S., Rose P.W., Ward A. & Evans J. (2012) Interpretation and acceptance of the term ‘cancer survivor’: a United Kingdom-based qualitative study. European Journal of Cancer Care 21, 177–186. Kornhaber R., Wilson A., Abu-Qamar M.Z. & McLean L. (2013) Coming to terms with it all: adult burn survivors’ ‘lived experience’ of acknowledgment and acceptance during rehabilitation. Burns Nov 25, [Epub ahead of print]. doi:10.1016/j.burns.2013.08.038. Lang J. (2007) The survivor. The Massachusetts Review 48(3), 358–360. Mayo Clinic (2012) Search Results: Survivor. Retrieved from http:// search2.mayoclinic.com/search?q=survivor&site=mayoclinic-org% 7Cmayoclinic-com%7Cmayo-edu%7Cinternet-research%7Cclini cal-trials&client=unified&proxystylesheet=unified&output=xml_ no_dtd on 18 November 2013. Mckenzie H. & Crouch M. (2004) Discordant feelings in the lifeworld of cancer survivors. Health (London) 8(2), 139–157. Mishel M. (1988) Uncertainty in illness. Journal of Nursing Scholarship 20(4), 225–232. doi:10.1111/j.1547-5069.1988. tb00082.x. Mishra A.K. & Spreitzer G.M. (1998) Explaining how survivors respond to downsizing: the roles of trust, empowerment, justice and work design. The Academy of Management Review 23(3), 567–588. Mullan F. (1985) Seasons of survival: reflections of a physician with cancer. The New England Journal of Medicine 313, 270–273. Myers D.A., Burkhauser R.V. & Holden K.C. (1987) The transition from wife to widow: the importance of survivor benefits to widows. The Journal of Risk and Insurance 54(4), 752–759. Naples N.A. (2003) Deconstructing and location survivor discourse: dynamics of narrative, empowerment and resistance for survivors of childhood sexual abuse. Signs: Journal of Women in Culture and Society 28(4): 1151–1185.
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M. Hebdon et al. National Cancer Institute (2011) Cancer Control Continuum. Retrieved from http://cancercontrol.cancer.gov/od/continuum. html on 30 November 2013. National Cancer Institute (2012) About Cancer Survivorship Research: Survivorship Definitions. Retrieved from http:// cancercontrol.cancer.gov/ocs/definitions.html on 18 November 2013. National Cancer Institute (n.d.a) Malignancy. Retrieved from http:// www.cancer.gov/dictionary?CdrID=45771 on 18 November 2013. National Cancer Institute (n.d.b) Survivor. Retrieved from http:// www.cancer.gov/dictionary?cdrid=445089 on 18 November 2013. Nutkiewicz M. (2003) Shame, guilt and anguish in holocaust survivor testimony. The Oral History Review 30(1), 1–22. Oxford Dictionaries (2013) Definition of Survivor in English. Retrieved from http://www.oxforddictionaries.com/us/definition/ american_english/survivor on 18 November 2013. Peck S. (2008) Survivorship: a concept analysis. Nursing Forum 43 (2), 91–102. doi:10.1111/j.1744-6198.2008.00100.x. Pierce S. (2011) The lived experience of parents of adolescents who have sexually offended: i am a survivor. Journal of Forensic Nursing 7(4), 173–181. doi:10.1111/j.1939-3938.2011.01116.x. Pierce G.R., Sarason I.G. & Sarason B.R. (1991) General and relationship-based perceptions of social support: are two constructs better than one? Journal of Personality and Social Psychology 61(6), 1028–1039. PubMed (n.d.) Results: Survivor. Retrieved from http://www-ncbinlm-nih-gov.ezproxy.lib.purdue.edu/pubmed/?term=survivor on 18 November 2013. Sarason I.G., Levine H.M., Basham R.B. & Sarason B.R. (1983) Assessing social support: the social support questionnaire. Journal of Personality and Social Psychology 44(1), 127–139. SF-36.org (n.d.) The SF-12: An Even Shorter Health Survey. Retrieved from http://www.sf-36.org/tools/sf12.shtml on 30 November 2013.
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Shepherd E.J. & Woodgate R.L. (2010) Cancer survivorship in children and young adults: a concept analysis. Journal of Pediatric Oncology Nursing 27(2), 109–118. doi:10.1177/ 1043454209349807. Song Meanings (n.d.) Destiny’s Child-Survivor. Retrieved from http://songmeanings.com/songs/view/3912/ on 18 November 2013. Surveillance Epidemiology and End Results (2014) Cancer Facts and the War on Cancer. Retrieved from http://training. seer.cancer.gov/disease/war/ on 30 November 2013. The Free Dictionary (2013) Survive. Retrieved from http:// www.thefreedictionary.com/survivor on 18 November 2013. Thon M.R. (2009) Survivors. Agni 69, 31–37. Travis J. (2002) Viral survivor. Science News 162(5), 75–76. University of Pennsylvania (2006) Authentic Happiness. Retrieved from http://www.authentichappiness.sas.upenn.edu/Default.aspx on 30 November 2013. Walker L.O. & Avant K.C. (2010) Strategies for Theory Construction in Nursing, 5th edn. Prentice Hall, Norwalk, CT. Wikipedia (2013) Survivor (U.S. TV series). Retrieved from http:// en.wikipedia.org/wiki/Survivor_(U.S._TV_series) on 18 November 2013. Wlodarski A.L. (2007) ‘An idea can never perish’: memory, the musical idea and Schoenberg’s A Survivor from Warsaw (1947). The Journal of Musicology 24(4), 581–608. World Health Organization (2010) Search Results: Survivor. Retrieved from http://search.who.int/search?q=survivor&ie=utf8 &site=who&client=_en&proxystylesheet=_en&output=xml_no_dtd &oe=UTF-8&getfields=doctype&ulang=en&ip=98.223.229.74& access=p&sort=date:D:L:d1& on 18 November 2013. World Health Organization (2014) Integrated Chronic Disease Prevention and Control. Retrieved from http://www.who.int/chp/ about/integrated_cd/en/ on 30 November 2013. Zigmond A.S. & Snaith R.P. (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67(6), 361–370.
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Concept analysis of cancer survivor
Appendix A Table A1 Survivor Sources and Definition Summaries. Sources
Definitions
Dictionary and thesaurus A person who survives, especially a person remaining alive after an event in which others have died; the remainder of a Oxford group of people or things; a person who copes well with difficulties in their life; a joint tenant who has the right to the Dictionaries whole estate on the other’s death. (2013) Economics Myers et al. The survivor is the widow left after the death of her spouse. These widows have a high potential for poverty without (1987) survivor benefits and therefore, are reliant on spouses to ensure survivor benefits. Epidemiology Survivors in the workforce are those workers who remain following a continuing selection process. This process is due Arrighi and to the presence of illness that makes some individuals unable to work. The remaining individuals are healthy enough to Picciotto work. (1994) Immunology Travis (2002) Epstein–Barr virus is a ‘viral survivor’, because it evades detection and elimination by the immune system through attaching to memory B cells and viral proteins. Literature Lang (2007) Fictional account of a Jew delving into Holocaust literature. The survivor is one who lived through the Holocaust, but the reader is a survivor as well by partaking in the experience. Thon (2009) Short story discussing survivors from tragedy and those who do not survive. Discusses the relationship between a mother and her son who survive conflict, the mother’s negligence and the son’s anger. The ending line is about forgiveness as the key to their survival. Management Survivors of corporate downsizing are those that remain after layoffs. These individuals may experience job stress and Mishra and burnout or find the opportunity for personal growth. Survivors do not all respond the same to downsizing. Spreitzer (1998) Mathematics Kahan (2007) A mathematical survivor is the sole remaining number following a series of mathematical manipulations. Medical and Public Health Websites National One who remains alive and continues to function during and after hardship. In cancer, an individual from the time of Cancer diagnosis to death. Distinct from survivorship, which focuses on the healthcare needs of a cancer survivor until the end Institute of life. (n.d.b) Those who have experienced and lived through cancer, disaster (World Trade Center bombing), traumatic brain injury, Centers for sexual assault, parasites, etc. Disease Control and Prevention (2012) Mayo Clinic Those who have experienced and lived through cancer. There are ongoing concerns for these individuals and they (2012) require support from family, friends and healthcare providers. Those who have experienced and lived through accidents, disasters, infectious disease (i.e. malaria, polio, tuberculosis), World Health sexual assault, acid violence, cancer. There are ongoing needs after the experiences described above. Organization (2010) Those who have experienced and lived through cancer and/or sexual assault. Impact of those events results in needs for Institute of those who are survivors. Medicine (2009) Medicine Khan et al. The term ‘cancer survivor’ was a narrow definition of a patient’s experience of not being killed by cancer. Some felt the (2012) experience of cancer treatment was not serious enough to warrant the term ‘survivor’, and that term should be reserved for more aggressive cancers. ‘Cancer survivor’ is pretentious because everybody survivors something. Cancer survivor denotes a choice in surviving cancer, when it often comes down to care and luck for those who survive and those who do not. Survivor implies a cure, but recurrence is always a risk. Cancer survivor is a label and identity that some do not want. Cancer survivor implies an advocacy role.
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Table A1 (Continued). Sources
Definitions
Kornhaber et al. (2013) Graven et al. (2013) Music Wlodarski (2007) Destiny’s Child (Song Meanings n.d.) Nursing Godwin et al. (2013)
Burn survivors are those who survive after severe burns. These individuals encounter challenges due to their injury, require rehabilitation and must come to terms with their injury and body image.
Davies (2013)
Kazanjian et al. (2012) Pierce (2011)
Oral History Nutkiewicz (2003) Pedagogy Berry (2008)
Stroke survivors are those who live through stroke and return to the community. They require ongoing services and community support in the chronic phase after a stroke. Schoenberg’s A Survivor From Warsaw is a musical crescendo of Jewish suffering and horror defeated by unwavering faith. Survivor talks about overcoming, becoming stronger and continuing on with life.
Stroke survivors are those who have survived a stroke. These individuals and caregivers experience co-morbidities and lifestyle changes. Health-related quality of life is affected and negative stroke-related outcomes persist for years after the stroke, with some worsening over time. A survivor is someone who is successfully treated and survives long term. Survivors cope with late effects of cancer and treatment, including pain. Survivors should be considered those who have finished active treatment, have no evidence of disease and are under cancer surveillance. Survivorship is defined as beginning at diagnosis and extending to the end of life. Cancer survivors are those living with a history of cancer, their families and their caregivers. They may experience physical, psychological and social consequences of cancer and its treatment. Cancer survivorship is a phase of the cancer trajectory. Discusses parents of children who have committed a sexual offense as survivors. These individuals experienced shock, anger, questions and they learnt to deal with it. The offense affected every part of their life, but they felt they were stronger from the experience. They knew life would continue to be difficult. Holocaust survivors are those who lived through the Holocaust. These individuals experience public and private trauma. They struggle with the competing needs of staying quiet and forgetting vs. memorializing and speaking out. Use of the television show, Survivor, as a basis for active learning. The survivor is the last person left in the game, but their success is promoted through tribal interaction.
Personal Testimony R. Thomas ‘Everyone will die of something, so it comes down to how you can live a productive life. I still have Guianne Barre and (2013) cancer, but it is okay. I can live my life completely even with these conditions. I guess I am a survivor of both of these. I will die of something, but I don’t dwell on that. I feel like asthma impairs me more than anything. I still take stairs even if I can’t breathe or I am walking with a cane. You can’t let things keep you from the things you enjoy’. A. Thomas ‘I think that the hardest thing for someone with cancer is after treatment. It is living with the aftermath. It does not all (2013) go away for years, if forever. The ‘new normal’ is hard’. Philosophy and Sociology Naples (2003) Sexual abuse survivors are those who have lived through the abuse and redefined their relationship with the experience from the victim status. Survivors’ experiences are affected by class, race, sexuality, identity and history. Popular Media A televised contest where the last contestant standing after a series of challenges and physical extremities is the winner. Survivor Participants are reliant not only on themselves, but those in their tribes for their success (Wikipedia 2013) Psychology A cancer survivor is a person from the time of diagnosis to the end of life. Cancer survivor identity is overly heroic, Chambers unrealistically positive, minimizes physical and emotional cost of cancer, alienates individuals with advanced disease or et al. who will ultimately die from the cancer and defines people by their disease. In contrast, some felt an empowered (2012) identity, improved self-esteem, healthy lifestyle behaviours and better cancer-related survival. Those who identified themselves as cancer survivors had higher personal and interpersonal growth, acceptance and life satisfaction scores than those who identified themselves as persons who have had cancer. Increased life satisfaction and physical activity for cancer survivors over all groups.
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Concept analysis of cancer survivor
Table A1 (Continued). Sources
Definitions
Garrett et al. (2013) Ho and Lee (2013) Jones (2013)
Patients transition from active cancer patients to survivors. Cancer survivors suffer from psychosocial sequelae and often do not adhere to health promotion activities. Traumatic brain injury survivor is an individual that lives after the injury. These individuals have major challenges to overcome and require rehabilitation. Soldiers and veterans as survivors are those who are living, but have experienced or might experience anger, anxiety, depression, post-traumatic stress, adjustment to life outside the armed forces, marital and relationship challenges and effects of physical injury.
Appendix B Figure A1 Survivor in the Cancer Context.
Economic Challenges Physical Challenges
Difficult Experience Cancer Diagnosis
Antecedents: Cancer Diagnosis Cancer Treatment Being Alive
Emotional Challenges
Follow-up Care Critical Attributes of Cancer Survivor: Living with a history of malignancy Surviving a difficult experience such as treatment Having positive and negative effects from cancer and treatment Receving follow-up care for cancer Having a personal, contextual cancer experience
Social Challenges Consequences: Overcoming Challenges Sense of Well-Being Self-Advocacy Ongoing Challenges Need for Support
Self-Efficacy
Living Person
Social Support Medical Intervention
Resilience Happiness Empirical Referents
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Survivor in the cancer context: a concept analysis Megan Hebdon, Karen Foli & Sara McComb Accepted for publication 30 January 2015
Correspondence to M. Hebdon: e-mail: [email protected] Megan Hebdon RN FNP-c Doctor of Nursing Practice Student Purdue University School of Nursing and Family Nurse Practitioner, Indiana University Health Arnett Internal Medicine Group, West Lafayette, Indiana, USA Karen Foli PhD RN Assistant Professor Purdue University School of Nursing, West Lafayette, Indiana, USA Sara McComb PhD Associate Professor Purdue University Schools of Nursing and Industrial Engineering, West Lafayette, Indiana, USA
H E B D O N M . , F O L I K . & M C C O M B S . ( 2 0 1 5 ) Survivor in the cancer context: a concept analysis. Journal of Advanced Nursing 71(8), 1774–1786. doi: 10.1111/ jan.12646
Abstract Aim. The aim of this analysis was to define survivor in the cancer context. Background. Cancer survivor has been used in the cancer lexicon, but may not represent the individuals it defines. Design. This concept analysis was completed according to Walker and Avant’s method. Data sources. PubMed, PsychInfo, CINAHL, JSTOR, Google and medical and public health websites. Review methods. Thirty sources from multiple disciplines, published between 1987–2013, were analysed for recurrent themes and conceptual meaning. Critical attributes, antecedents and consequences were extrapolated. Model, related and contrary cases were developed based on an amalgamation of clinical observations. Illegitimate, borderline and invented cases were excluded for this reason. Results. Survivor in the cancer context is an individual with a history of malignancy, who has lived through a personalized challenge and has ongoing positive and negative consequences. Not all cancer survivors would identify themselves using the term survivor. Conclusions. This contributes to the paradigm shift of cancer as a chronic disease as it establishes the unique nature of the cancer experience while highlighting the long-term concerns related to this set of diseases. The Theory of Uncertainty in Illness provides a framework to understand the individualized nature of being a cancer survivor. Nursing research and practice should address the personal experiences of cancer survivors while still focusing on general survivorship needs. Keywords: chronic disease, concept analysis, individual differences, neoplasm, nurses, stressful events, survivor, uncertainty
Introduction Globally, an estimated 170 million years of healthy life were lost because of cancer in 2008. In fact, cancer is a leading cause of disease worldwide with approximately
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325 million individuals still living up to 5 years past their cancer diagnosis (Cancer Research UK 2014). In the United States in 2012, nearly 137 million individuals were living with a history of cancer (American Cancer Society 2014). With early diagnosis and advances in treatment modalities,
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Why is this research or review needed? Research has suggested that all individuals with a history of cancer may not identify with the term survivor due to the positive and negative connotations associated with this term. Other concept analyses have focused on cancer survivors, cancer survivorship, or survivorship in chronic illness, but there is a need for a cross-disciplinary understanding of survivor in the cancer context.
What are the key findings? A survivor in the cancer context is an individual who has
Concept analysis of cancer survivor
This definition of cancer survivor has been echoed by many institutions and even extended to the inclusion of caregivers, friends and family as survivors due to their role in the survivorship experience (Centers for Disease Control & Prevention 2004, National Cancer Institute (NCI) 2012). Yet, the prevailing usage of the term ‘cancer survivor’ is for those who have a personal history of cancer, especially those who have completed active treatment (NCI 2012). Clarity of this concept, therefore, is needed, particularly as it relates to how and when this term is applied in the cancer context and its ability to capture the experiences of individuals living with a history of cancer.
a diagnosis of malignancy, has lived through a challenging experience, has positive and negative consequences related to their disease and whose experience is individualized. Survivor is the individual experience of a person living with a history of cancer and survivorship denotes the general needs of individuals after primary cancer treatment completion. With the personal nature of being a cancer survivor, all individuals who might be defined by this term do not identify with it.
How should the findings be used to influence policy/ practice/research/education? Future researchers should address the personal nature of being a cancer survivor and the general needs of the cancer survivorship care period. Nurses may use the Theory of Uncertainty in Illness in addressing the needs of cancer survivors in practice and research to understand the personal context of their experience.
this number is projected to increase to 18 million by 2022 (De Moor et al. 2013). The cancer control continuum is a term that has been used from the mid-1970s to describe the phases of cancer and its treatment. Survivorship was a more recent addition to this continuum due to the growing population of cancer survivors (National Cancer Institute 2011). Fitzhugh Mullan, a physician and cancer survivor, was influential in garnering attention for the survivorship phase of cancer and cancer survivors with his article ‘Seasons of Survival’. In this, he states: Survival is a much more useful concept, because it is a generic idea that applies to everyone diagnosed as having cancer, regardless of the course of the illness. Survival, in fact, begins at the point of diagnosis, because that is the time when patients are forced to confront their own mortality and begin to make adjustments that will be part of their immediate and to some extent, long-term future (Mullan 1985, p. 271).
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Background The term survivor has become part of the lexicon in the cancer context. Nevertheless, the concept of survivor is not consistently applied nor is it distinguished from other aspects of cancer care. For instance, overlap between the terms cancer survivor and survivorship occurs frequently throughout the literature (Davies 2013). These terms denote very different phenomena as will be discussed further in this concept analysis. Previous efforts have been undertaken to address the concepts of cancer survivor and survivorship. These analyses have focused on paediatric and young adult cancer survivors (Shepherd & Woodgate 2010), African-American breast cancer survivors (Farmer & Smith 2002), survivorship in the context of chronic illness (Peck 2008) and general cancer survivorship (Doyle 2008). The first two contribute to our understanding of cancer survivorship in the context of specific patient populations. The second two provide clarity around the concept of survivorship. Still missing, however, is a broader understanding of the term survivor, particularly as it relates to cancer. Thus, the primary purpose of this concept analysis is to draw on multiple disciplines to describe the parameters of the term ‘survivor’ in the cancer context. Mullan (1985) provides compelling rationale for considering survival in the cancer context. This term, however, has become historically, culturally, emotionally and politically charged and should not be applied casually (Bell & Ristovski-Slijepcevic 2012). Its genesis may derive from President Nixon’s declaration of war on cancer in the 1970s (Surveillance Epidemiology & End Results 2014). Since that time an undercurrent of battle themes has been prevalent in the research, diagnosis and treatment of cancer. Indeed, a survivor is viewed in terms of ‘winning the fight’, when for many individuals with cancer this is not the case (Bell & Ristovski-Slijepcevic 2012). Cancer survivors are often left with long-term side effects and late effects of cancer and its treatment. Rather than 1775
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being victors over their disease, they continue a lifelong struggle due to their cancer diagnosis (Centers for Disease Control & Prevention 2004). The transition survivors experience from active treatment to follow-up care may be a time of uncertainty where the illness meaning they construct is based on factors such as ambiguity of their illness state, treatment complexity, information gaps and an unpredictable disease course as described in Mishel’s Theory of Uncertainty in Illness (Mishel 1988). Thus, the victorious characterization of cancer survivors may be misleading for the general public, because cancer is a set of diseases with complicated environmental and genetic influences (Surveillance Epidemiology & End Results 2014). A more appropriate war analogy may be the war in Vietnam or the war on terror, where victory may not come at a single point in time and multiple battles are fought resulting in an ongoing series of positive and negative consequences. The secondary purpose of this concept analysis, therefore, is to consider whether ‘survivor’ is a relevant term for those who have a history of cancer.
Data sources
malignancy, a group of diseases where abnormal cells divide without control and can invade nearby tissues or spread through the blood and lymph systems (NCI undated). Disease groups included in the definition of malignancy are: carcinoma, sarcoma, leukaemia, lymphoma and central nervous system cancers (NCI undated).
Literature search strategy A literature search was conducted using the term ‘survivor’ in the following databases: PubMed, CINAHL, PsychInfo and JSTOR. Articles from multiple disciplines published between 1987–2013 were reviewed for their relevance to this analysis including: medicine; nursing; psychology; insurance; mathematics; and English. Google searches were also completed using the terms ‘survivor’ and ‘survivor definition’, which yielded dictionary definitions and results from popular media including television and music. A search was conducted using the term ‘survivor’ in medical and public health web sites and the results were also reviewed for pertinent material. The first fifty hits on each site were reviewed for inclusion.
Concept analysis method
Data analysis
This concept analysis followed Walker and Avant (2010) approach, which includes the eight following steps: concept selection; determination of aims and purposes of the analysis; identification of all uses of the concept; determination of defining attributes; construction of a model case; construction of borderline, related, contrary, invented and illegitimate cases; identification of antecedents and consequences; and definition of empirical referents (Chinn & Kramer 2011). The only change to this approach for this discussion will be the lack of borderline, invented and illegitimate cases. The composite cases presented were developed based on actual clinical observation and are representative of an amalgam of observations with exemplar individual cases reported. As there were no observed cases to meet the criteria for borderline, invented, or illegitimate cases, these cases were excluded.
A total of 30 sources were analysed and vetted for inclusion in this analysis by one author (MH). Data were then organized in Table A1 (Appendix A). Sources were selected based on their inclusion of the term ‘survivor’, were published in English and if they presented ‘survivor’ in a different perspective or setting than previously selected sources. As a team, themes were then extracted and agreed on using Carper’s ways of knowing, including aesthetic knowing, empiric knowing, ethical knowing and personal knowing (Chinn & Kramer 2011). Recurrent themes were noted and conceptual meaning was induced from these themes. Critical attributes of the concept were based on the redundant meanings from the sources. Antecedents and consequences were formulated based on the literature and relationships to the critical attributes.
Results Concept analysis context Cancer is the context where this concept analysis of survivor is embedded. Cancer is a group of diseases, rather than a singular entity and may be characterized by a solid tumour or by abnormal cell proliferation in the hematologic and lymphatic systems (NCI undated). The most descriptive term of the cancer context for this paper is the term 1776
Uses of the concept There are multiple uses and contexts for the term survivor. Table A1 (Appendix A) outlines the concept of survivor among varying disciplines and populations. In the Pubmed search alone, articles covered survivors of cardiac events, stroke, cancer, abuse, disaster and traumatic brain injury © 2015 John Wiley & Sons Ltd
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(PubMed n.d.). The root term for survivor is ‘survive’, which means to remain alive and functional and to persevere. Survive has Middle English, French and Latin roots. The Latin prefix ‘super’ means above or surpassing and ‘vivere’ means to live (The Free Dictionary 2013, Empire.net n.d.). The recurrent theme among all the sources is that a survivor is a person or entity who survives adversity or elimination. In sources relevant to individuals, the survivor is one who has lived through something traumatic, difficult, or challenging, whether illness, disaster or trauma (Myers et al. 1987, Arrighi & Picciotto 1994, Mishra & Spreitzer 1998, Travis 2002, Naples 2003, Nutkiewicz 2003, Kahan 2007, Lang 2007, Wlodarski 2007, Berry 2008, Institute of Medicine 2009, Thon 2009, World Health Organization 2010, Pierce 2011, Centers for Disease Control & Prevention 2012, Chambers et al. 2012, Kazanjian et al. 2012, Khan et al. 2012, Mayo Clinic 2012, Davies 2013, Garrett et al. 2013, Godwin et al. 2013, Graven et al. 2013, Ho & Lee 2013, Jones 2013, Kornhaber et al. 2013, Oxford Dictionaries 2013, National Cancer Institute n.d.a,b, Song Meanings n.d.). Positive and negative meanings for the term survivor were identified, highlighting both triumph and continued obstacles (National Cancer Institute n.d.a,b, Song Meanings n.d., Myers et al. 1987, Mishra & Spreitzer 1998, Naples 2003, Wlodarski 2007, Institute of Medicine 2009, World Health Organization 2010, Pierce 2011, Centers for Disease Control & Prevention 2012, Chambers et al. 2012, Kazanjian et al. 2012, Khan et al. 2012, Mayo Clinic 2012, Davies 2013, Garrett et al. 2013, Godwin et al. 2013, Graven et al. 2013, Ho & Lee 2013, Jones 2013, Kornhaber et al. 2013, Nutkiewicz 2003). From personal communications, a cancer survivor and his spouse noted that the greatest difficulties for an individual with cancer are often after cancer treatment (A. Thomas, personal communication, 6 December 2013; R. Thomas, personal communication, 6 December 2013). As noted previously, the themes were evaluated through Carper’s ways of knowing (Chinn & Kramer 2011). Empiric and personal knowing are particularly relevant in the meanings noted among the sources. In multiple sources, a focus on the personal experience of being a survivor was identified, rather than the collective norm of being a survivor (Mishra & Spreitzer 1998, Naples 2003, Nutkiewicz 2003, Chambers et al. 2012, Khan et al. 2012, Kornhaber et al. 2013, A. Thomas, personal communication, December 6, 2013, R. Thomas, personal communication, 6 December 2013). Some people may have been a survivor based on empiric terms, but did not feel that survivor was part of their identity (Chambers et al. 2012, Khan et al. 2012). Being a survivor in many sources resulted in © 2015 John Wiley & Sons Ltd
Concept analysis of cancer survivor
persistent trials and/or the need for support from external sources (Myers et al. 1987, Nutkiewicz 2003, Institute of Medicine 2009, World Health Organization 2010, Pierce 2011, Kazanjian et al. 2012, Mayo Clinic 2012, Davies 2013, Godwin et al. 2013, Graven et al. 2013, Ho & Lee 2013, Jones 2013, Kornhaber et al. 2013). Based on these convergent meanings of survivor, a survivor is defined herein as an individual who lives through a difficult experience, but has ongoing positive and negative consequences related to this experience that are specific to each survivor. In other words, individuals may face the same challenges, but external and internal factors influence the individual meaning of the experience and the way the individual moves forward. This definition is applicable in the cancer context with the addition of a history of malignancy. In terms of cancer, survivor is distinct from survivorship, with the survivor being an individual and survivorship being the ongoing healthcare needs, such as surveillance and treatment of late effects, of an individual through the end of life (Kazanjian et al. 2012, National Cancer Institute n.d.b).
Critical attributes The critical attributes of a concept are those ideas that distinctly and concisely describe the conceptual meaning. All of these attributes must be present for a phenomenon to qualify as an example of the concept of interest (Chinn & Kramer 2011). The critical attributes for cancer survivor lie fundamentally in the term survivor. A simple attribute for cancer survivor would be ‘living with a history of malignancy’, but more complex attributes are found in the term survivor. Hence, a more comprehensive list of critical attributes of a survivor is an individual who: (a) is living with a history of malignancy; (b) has lived through a difficult experience such as cancer treatment; (c) has been impacted in positive and negative ways by the experience; (d) is in the follow-up phase of their cancer treatment; and (e) whose experience is personal and contextual.
Antecedents and consequences Antecedents and consequences were identified based on the critical attributes noted above. Antecedents are experiences that would come before the concept of interest (Chinn & Kramer 2011). Antecedents for cancer survivor would be the diagnosis of cancer, the treatment of cancer and being alive. Consequences are events that follow the concept of interest (Chinn & Kramer 2011). From the sources discussed in this analysis, it is clear that a cancer survivor does 1777
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not survive unaffected. They have ongoing physical, emotional, financial and social challenges that may require support and/or medical intervention. Many of the sources indicate the requirement of support from external sources. There are also the positive outcomes, such as improved self-advocacy, sense of well-being and the victory of overcoming a challenge.
Empirical referents Empirical referents are specific tools or measurements that might be used in a research study. Empirical referents for cancer survivor address some of the dimensions of cancer survivor: cancer diagnosis, living person, difficult experience (i.e. trauma, cancer treatment), follow-up care (i.e. resources utilization, surveillance and screening activities) emotional challenges (i.e. anxiety or depression), physical challenges (i.e. disability, health-related quality of life), social challenges (i.e. employment status, relationships), social support (i.e. friends, family, medical providers), medical intervention (i.e. number of specialty referrals, number of medications), self-advocacy (self-advocacy), sense of well-being (i.e. self-efficacy, happiness) and overcoming challenges (resilience). The definition in this analysis indicates that a cancer survivor is not only an individual who has lived through the challenge of a cancer diagnosis, but has an individualized cancer experience with positive and negative consequences. These consequences may be evaluated by measures such as the following: the Hospital Anxiety and Depression Scale for emotional challenges, the Short Form 12 for healthrelated quality of life, Quality of Relationships Inventory for social challenges, the Social Support Questionnaire for social support and self-reported healthcare utilization for medical intervention, Cancer Behavior Inventory-Brief for self-efficacy, Authentic Happiness Inventory Questionnaire for happiness and Resilience Scale for overcoming adversity (Sarason et al. 1983, Zigmond & Snaith 1983, Pierce et al. 1991, Heitzman et al. 2001, Ahern et al. 2006, University of Pennsylvania 2006, Ansah & Powell-Jackson 2013, SF36.org n.d.). Figure A1 illustrates the relationship between the critical attributes, antecedents, consequences and empirical referents of cancer survivor.
Case examples Model case RL is a 52 year-old female who was diagnosed with colon cancer at the age of 50 after a screening colonoscopy. She 1778
had a significant amount of fear at the time of her diagnosis due to family members who had died from cancer. RL was treated with colon resection and chemotherapy. Since then, she has followed up with her primary care provider and medical oncologist for her CT scans and carcinoembryonic antigen (CEA) levels, she has managed her multiple co-morbid conditions and she continues to work as an elementary school teacher. She has experienced effects related to her cancer and its treatment, including bowel and sexual dysfunction, depression and cognitive impairment. She receives medical intervention for these concerns with biofeedback, counselling and anti-depressants. She is confident in the cancer treatment she received, but has ongoing concerns about recurrence. She relies on the support of her family, especially her spouse and her healthcare providers. She plans to continue living life, knowing she will die of something, if not the cancer. The above is a model case of a cancer survivor, as RL was diagnosed with a malignancy, lived through treatment and is now receiving follow-up care. She continues to deal with the late effects related to her cancer and treatment, but also lives her life. Her experience with cancer was affected by her personal experience with family members with cancer. She accesses external sources of support in coping with her cancer and related concerns.
Related case BA is a 28-year-old female with a family history of breast cancer. Her mother died at the age of 42 and tested positive for BRCA-1 and BRCA-2. Both of her mother’s sisters were also diagnosed with breast cancer, but are still living. BA received the news that she is positive for the BRCA-1 and BRCA-2 gene. BA chose to have a prophylactic bilateral mastectomy followed by reconstructive surgery. Due to her risk for cancer, she eats well, exercises, avoids tobacco and limits her alcohol intake. She hopes to beat any potential cancer before it has a chance to take hold. She wants to live past 40 and be able to meet her grandchildren. She is motivated to be healthy for her two children and her husband. She is supported by her husband and medical providers in her decisions about her care. She occasionally expresses fears about the future, especially about the risk of ovarian cancer due to her genetic risk. BA is an example of a related case, as she was not diagnosed with a malignancy, but had the potential for developing a malignancy. She does exhibit attributes of a survivor by undergoing treatment for cancer prophylaxis, living through treatment, engaging in positive behaviours due to © 2015 John Wiley & Sons Ltd
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her risk for cancer, having fears due to her cancer risk and relying on external support sources.
Contrary case GR, a 76-year-old man, presented to the emergency room with a cough and shortness of breath that had been increasing in severity over the past 2 weeks. A chest x-ray showed a pleural effusion suspicious for pulmonary malignancy. After chest tube drainage and pathology reports demonstrated no evidence of malignancy, the patient was treated for acute pneumonia in the hospital. Rather than expressing relief to his family that he did not have cancer, he continued to discuss fears related to a diagnosis of cancer. Two days after being admitted to the hospital he was being prepared for discharge due to stabilization of his white blood cell count and clinical response to antibiotic therapy. As the nurse came into the room to give discharge education, he was found in cardiac arrest. A code was called, he was resuscitated and placed on life support. After 24 hours, his family removed life support per his wishes and he died a few hours later. GR is an example of a contrary case because he did not exhibit any of the critical attributes of a survivor in the cancer context. He did not have a malignancy, so was not treated for this condition and did not access support for his illness. It is unknown whether there were positive and negative consequences of his experience as he did not express these factors before his death. In fact, he seemed in denial regarding the fact that he did not have cancer. He did not have ongoing needs, due to his unexpected death.
Discussion Based on this analysis, cancer survivor implies more than just an individual who is living with a history of cancer. The accepted views of triumph and overcoming that may be communicated with the term survivor do not apply to all those who, by definition, are considered cancer survivors (Bell & Ristovski-Slijepcevic 2012). The extrapolated meaning of cancer survivor in this analysis includes the diversity of personal experiences, both positive and negative, that individuals living with cancer may encounter. This analysis embraces what Arthur W. Frank discusses in The Wounded Storyteller about the need for patients to restructure and acclimate to their postillness world (Frank 1997). The definition of cancer survivor in this analysis contributes to the paradigm shift of cancer as a chronic disease rather than the acute, life-threatening illness it was in the past. Chronic disease as defined by the Center for © 2015 John Wiley & Sons Ltd
Concept analysis of cancer survivor
Managing Chronic Disease is a long-lasting condition that can be controlled, but not cured (Center for Managing Chronic Disease 2011, para 1). In cancer research and treatment, the word cure is often used. The American Cancer Society (2013) discusses cancer as a chronic disease, but in terms of an individual who continues on therapy until the end of life to keep their cancer stabilized. Yet, the World Health Organization and the Centers for Disease Control and Prevention list cancer as a chronic disease with suggestions for integrated prevention and health promotion (Centers for Disease Control & Prevention 2013, World Health Organization 2014). The definition of chronic disease that this concept analysis attempts to address is the idea of a chronic disease continuum. No two chronic diseases are alike just as no two individuals are completely alike. There are key features of chronic disease including: acute exacerbations, chronic management with prevention and treatment strategies, variability in disease expression (i.e. insulin resistance and gestational diabetes in Type II diabetes) and long-standing consequences related to the diagnosis or treatment. For some with a cancer diagnosis, they may achieve remission with one short-term treatment modality, while others may continue on treatment for the remainder of their life. Even for those who are in remission, as described in this analysis, there are ongoing treatment and prevention needs and consequences from cancer and its treatment. This idea of cancer as a chronic illness aligns with Merle Mishel’s Theory of Uncertainty in Illness where a cancer survivor’s uncertainty about their disease trajectory may lead to either positive or negative coping strategies (Mishel 1988). In Mishel’s theory and in this analysis, those with chronic diseases such as cancer have individualized experience influenced by multiple factors including social support, prior life events, healthcare provider communication and existing needs or challenges (Mishel 1988). Mckenzie and Crouch (2004) aptly describe this uncertainty survivors face due to fear of recurrence. This fear engenders the perception of being at higher risk than others resulting in interpersonal discordance. Understanding this variability in experience and the potential for uncertainty provides nurses with an opportunity to extend support and resources to those who have a history of cancer. For instance, due to the medical and psychosocial consequences of being a cancer survivor, they may require ongoing support through social, medical and community resources (Centers for Disease Control & Prevention 2004). Ganz (2011) has identified the three P’s of cancer survivorship care which focus on palliation of symptoms, prevention of recurrence and late effects and promotion of wellness. Focusing survivorship 1779
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care on these principles may prevent gaps in care. Nurses must also acknowledge that all patients may not want to be considered under the umbrella of ‘cancer survivor’ due to the positive or negative social connotations attached to this term. Taking the time to understand the individual’s perspective of their cancer and their life after cancer can guide the nurse’s care approach.
the usage of different terms to identify individuals with a history of cancer, or it may lead to more intentional use of the term cancer survivor. Specifically for nurses, research on cancer survivor needs grounded in the Theory of Uncertainty in Illness would lead to interventions that might decrease the potential psychological and functional burdens of this chronic illness.
Limitations
Funding
With the approach of this analysis there are several potential limitations of this analysis including the broad nature of the data analysis, the analysis of survivor alone rather than combined with the term cancer and the use of less recent sources. The data were analysed across disciplines to obtain an encompassing view of the term survivor, but this may affect the use of the term’s application to the nursing discipline. Survivor alone was used in analysing the data and then was applied to the cancer context. An analysis of the terms cancer and survivor together might yield a more precise definition of this term. Finally, data from sources older than 10 years was used for this analysis. While this could potentially affect the currency of the definition found in this analysis, historical and cross-disciplinary meanings give a rich understanding of survivor.
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sector.
Conflict of interest No conflict of interest has been declared by the authors.
Author contributions All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
• •
Conclusion This concept analysis can inform research through understanding the key differences between the terms survivor and survivorship. Survivorship is the general term applied to the care period after active treatment completion (National Cancer Institute n.d.b). Cancer survivors are individuals with very personal experiences of their cancer diagnosis, treatment and life beyond cancer (Chambers et al. 2012, Khan et al. 2012, A. Thomas, personal communication, December 6, 2013, R. Thomas, personal communication, December 6, 2013). Research and public policy for cancer survivorship should continue to focus on the broad needs of patients during this period of care, but the treatment of specific cancer survivors should not be lost in the general understanding of survivorship. Research should address the individual nature of patient experiences and views of the term ‘cancer survivor’ across the spectrum of cancer diagnoses, stages of disease and social and cultural contexts. Available measures, such as those presented herein as empirical referents, may aid researchers as they work to ascertain the most critical and efficient approaches to provide individualized care in a directed, cost effective manner. At this point, cancer survivor may be the best term available, but further research may lead to 1780
substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.
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Concept analysis of cancer survivor
Appendix A Table A1 Survivor Sources and Definition Summaries. Sources
Definitions
Dictionary and thesaurus A person who survives, especially a person remaining alive after an event in which others have died; the remainder of a Oxford group of people or things; a person who copes well with difficulties in their life; a joint tenant who has the right to the Dictionaries whole estate on the other’s death. (2013) Economics Myers et al. The survivor is the widow left after the death of her spouse. These widows have a high potential for poverty without (1987) survivor benefits and therefore, are reliant on spouses to ensure survivor benefits. Epidemiology Survivors in the workforce are those workers who remain following a continuing selection process. This process is due Arrighi and to the presence of illness that makes some individuals unable to work. The remaining individuals are healthy enough to Picciotto work. (1994) Immunology Travis (2002) Epstein–Barr virus is a ‘viral survivor’, because it evades detection and elimination by the immune system through attaching to memory B cells and viral proteins. Literature Lang (2007) Fictional account of a Jew delving into Holocaust literature. The survivor is one who lived through the Holocaust, but the reader is a survivor as well by partaking in the experience. Thon (2009) Short story discussing survivors from tragedy and those who do not survive. Discusses the relationship between a mother and her son who survive conflict, the mother’s negligence and the son’s anger. The ending line is about forgiveness as the key to their survival. Management Survivors of corporate downsizing are those that remain after layoffs. These individuals may experience job stress and Mishra and burnout or find the opportunity for personal growth. Survivors do not all respond the same to downsizing. Spreitzer (1998) Mathematics Kahan (2007) A mathematical survivor is the sole remaining number following a series of mathematical manipulations. Medical and Public Health Websites National One who remains alive and continues to function during and after hardship. In cancer, an individual from the time of Cancer diagnosis to death. Distinct from survivorship, which focuses on the healthcare needs of a cancer survivor until the end Institute of life. (n.d.b) Those who have experienced and lived through cancer, disaster (World Trade Center bombing), traumatic brain injury, Centers for sexual assault, parasites, etc. Disease Control and Prevention (2012) Mayo Clinic Those who have experienced and lived through cancer. There are ongoing concerns for these individuals and they (2012) require support from family, friends and healthcare providers. Those who have experienced and lived through accidents, disasters, infectious disease (i.e. malaria, polio, tuberculosis), World Health sexual assault, acid violence, cancer. There are ongoing needs after the experiences described above. Organization (2010) Those who have experienced and lived through cancer and/or sexual assault. Impact of those events results in needs for Institute of those who are survivors. Medicine (2009) Medicine Khan et al. The term ‘cancer survivor’ was a narrow definition of a patient’s experience of not being killed by cancer. Some felt the (2012) experience of cancer treatment was not serious enough to warrant the term ‘survivor’, and that term should be reserved for more aggressive cancers. ‘Cancer survivor’ is pretentious because everybody survivors something. Cancer survivor denotes a choice in surviving cancer, when it often comes down to care and luck for those who survive and those who do not. Survivor implies a cure, but recurrence is always a risk. Cancer survivor is a label and identity that some do not want. Cancer survivor implies an advocacy role.
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Table A1 (Continued). Sources
Definitions
Kornhaber et al. (2013) Graven et al. (2013) Music Wlodarski (2007) Destiny’s Child (Song Meanings n.d.) Nursing Godwin et al. (2013)
Burn survivors are those who survive after severe burns. These individuals encounter challenges due to their injury, require rehabilitation and must come to terms with their injury and body image.
Davies (2013)
Kazanjian et al. (2012) Pierce (2011)
Oral History Nutkiewicz (2003) Pedagogy Berry (2008)
Stroke survivors are those who live through stroke and return to the community. They require ongoing services and community support in the chronic phase after a stroke. Schoenberg’s A Survivor From Warsaw is a musical crescendo of Jewish suffering and horror defeated by unwavering faith. Survivor talks about overcoming, becoming stronger and continuing on with life.
Stroke survivors are those who have survived a stroke. These individuals and caregivers experience co-morbidities and lifestyle changes. Health-related quality of life is affected and negative stroke-related outcomes persist for years after the stroke, with some worsening over time. A survivor is someone who is successfully treated and survives long term. Survivors cope with late effects of cancer and treatment, including pain. Survivors should be considered those who have finished active treatment, have no evidence of disease and are under cancer surveillance. Survivorship is defined as beginning at diagnosis and extending to the end of life. Cancer survivors are those living with a history of cancer, their families and their caregivers. They may experience physical, psychological and social consequences of cancer and its treatment. Cancer survivorship is a phase of the cancer trajectory. Discusses parents of children who have committed a sexual offense as survivors. These individuals experienced shock, anger, questions and they learnt to deal with it. The offense affected every part of their life, but they felt they were stronger from the experience. They knew life would continue to be difficult. Holocaust survivors are those who lived through the Holocaust. These individuals experience public and private trauma. They struggle with the competing needs of staying quiet and forgetting vs. memorializing and speaking out. Use of the television show, Survivor, as a basis for active learning. The survivor is the last person left in the game, but their success is promoted through tribal interaction.
Personal Testimony R. Thomas ‘Everyone will die of something, so it comes down to how you can live a productive life. I still have Guianne Barre and (2013) cancer, but it is okay. I can live my life completely even with these conditions. I guess I am a survivor of both of these. I will die of something, but I don’t dwell on that. I feel like asthma impairs me more than anything. I still take stairs even if I can’t breathe or I am walking with a cane. You can’t let things keep you from the things you enjoy’. A. Thomas ‘I think that the hardest thing for someone with cancer is after treatment. It is living with the aftermath. It does not all (2013) go away for years, if forever. The ‘new normal’ is hard’. Philosophy and Sociology Naples (2003) Sexual abuse survivors are those who have lived through the abuse and redefined their relationship with the experience from the victim status. Survivors’ experiences are affected by class, race, sexuality, identity and history. Popular Media A televised contest where the last contestant standing after a series of challenges and physical extremities is the winner. Survivor Participants are reliant not only on themselves, but those in their tribes for their success (Wikipedia 2013) Psychology A cancer survivor is a person from the time of diagnosis to the end of life. Cancer survivor identity is overly heroic, Chambers unrealistically positive, minimizes physical and emotional cost of cancer, alienates individuals with advanced disease or et al. who will ultimately die from the cancer and defines people by their disease. In contrast, some felt an empowered (2012) identity, improved self-esteem, healthy lifestyle behaviours and better cancer-related survival. Those who identified themselves as cancer survivors had higher personal and interpersonal growth, acceptance and life satisfaction scores than those who identified themselves as persons who have had cancer. Increased life satisfaction and physical activity for cancer survivors over all groups.
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JAN: CONCEPT ANALYSIS
Concept analysis of cancer survivor
Table A1 (Continued). Sources
Definitions
Garrett et al. (2013) Ho and Lee (2013) Jones (2013)
Patients transition from active cancer patients to survivors. Cancer survivors suffer from psychosocial sequelae and often do not adhere to health promotion activities. Traumatic brain injury survivor is an individual that lives after the injury. These individuals have major challenges to overcome and require rehabilitation. Soldiers and veterans as survivors are those who are living, but have experienced or might experience anger, anxiety, depression, post-traumatic stress, adjustment to life outside the armed forces, marital and relationship challenges and effects of physical injury.
Appendix B Figure A1 Survivor in the Cancer Context.
Economic Challenges Physical Challenges
Difficult Experience Cancer Diagnosis
Antecedents: Cancer Diagnosis Cancer Treatment Being Alive
Emotional Challenges
Follow-up Care Critical Attributes of Cancer Survivor: Living with a history of malignancy Surviving a difficult experience such as treatment Having positive and negative effects from cancer and treatment Receving follow-up care for cancer Having a personal, contextual cancer experience
Social Challenges Consequences: Overcoming Challenges Sense of Well-Being Self-Advocacy Ongoing Challenges Need for Support
Self-Efficacy
Living Person
Social Support Medical Intervention
Resilience Happiness Empirical Referents
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The Journal of Advanced Nursing (JAN) is an international, peer-reviewed, scientific journal. JAN contributes to the advancement of evidence-based nursing, midwifery and health care by disseminating high quality research and scholarship of contemporary relevance and with potential to advance knowledge for practice, education, management or policy. JAN publishes research reviews, original research reports and methodological and theoretical papers. For further information, please visit JAN on the Wiley Online Library website: www.wileyonlinelibrary.com/journal/jan Reasons to publish your work in JAN:
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