Review Article

Understanding coping with cancer: How can qualitative research help? Mahati Chittem

ABSTRACT Research in psycho‑oncology investigates the psycho‑social and emotional aspects of cancer and how this is related to health, well‑being and overall patient care. Coping with cancer is a prime focus for researchers owing to its impact on patients’ psychological processing and life in general. Research so far has focused mainly on quantitative study designs such as questionnaires to examine the coping strategies used by cancer patients. However, in order to gain a rich and deep understanding of the reasons, processes and types of strategies that patients use to deal with cancer, qualitative study designs are necessary. Few studies have used qualitative designs such as semi‑structured interviews to explore coping with cancer. The current paper aims to review the suitability and benefits of using qualitative research designs to understand coping with cancer with the help of some key literature in psycho‑oncology research. KEY WORDS: Coping, psycho‑oncology, qualitative research

INTRODUCTION Cancer belongs to that class of diseases that impacts not only the physical health of the patient, but also their emotions following their diagnosis. The life‑changing diagnosis and treatment procedures have an indelible impact on the patient’s life, hence bringing the psycho‑social aspects of cancer into the forefront. There have been several studies evidencing that cancer can have many adverse psychological consequences such as distress, stress, anxiety and depression which, in turn, can elicit a lasting change in the patient’s psychological, emotional and cognitive processing.[1‑6] Similarly, exploring how patients cope with a cancer diagnosis, its implications as well as treatment is an expanding area of research in psycho‑oncology. Coping is an important psychological process that involves an individual’s cognitive and behavioral attempts to reduce or manage a stressor.[7] Coping, in the case of chronic diseases, is the way in which the individual responds to the diagnosis and how she/he deals with the disease.[8] Coping with cancer is a much needed skill as it helps patients stabilize their responses to the life‑changing diagnosis and its possible long‑term repercussions.[8,9] Research evidences that the way in which the patient copes with cancer has a direct effect on various psycho‑social factors such as their quality‑of‑life, psychological well‑being, social interactions, how they integrate the illness into their life and 6

so on.[9,10] These coping efforts can persist in the patient’s life posttreatment.[11‑13] Therefore, the role of and need for coping with cancer is an area that continues to be of interest in oncology. Psycho‑oncology research in coping has mainly focused on quantitative studies which show important trends using validated questionnaires on a larger sample.[14,15] However, these studies do not delve deeper into the processes of coping, the meaning of these coping strategies and the lived experience of coping with cancer. It is argued that using a qualitative methodology can give a more multifarious understanding of human behavior, thoughts and emotions compared to quantitative studies.[16] Qualitative research helps not only in explaining what are the ways in which the patient chooses to deal with the cancer, but also provides a rich background on the reasons and processes for this selection. The data that a qualitative study yields can, therefore, offer plenty of information because of its fundamental concern with meaning and putting the patient’s experience as a priority.[17] Given these advantages for using a qualitative methodology, there are comparatively few published studies that employed it to explore the coping strategies adopted by cancer patients. This is not to say that there have been no studies that were conducted in topics closely related to coping. For example, Tam Ashing et  al. used key informant and focus group interviews to understand the experience of having breast cancer in Asian American women and found that their

Department of Liberal Arts, Indian Institute of Technology, Yeddumailaram, Hyderabad, Andhra Pradesh, India For correspondence: Dr. Mahati Chittem, Department of Liberal Arts, Indian Institute of Technology, ODF Campus, Yeddumailaram ‑ 502 205, Hyderabad, Andhra Pradesh, India. E‑mail: [email protected]

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Journal of Cancer Research and Therapeutics - January-March 2014 - Volume 10 - Issue 1

Chittem: Qualitative research in coping cancer

spiritual beliefs helped them to cope.[18] Bottomley reported that a small sample of their group cognitive behavioral therapy participants felt they could better “improve” their coping with cancer with the behavioral tasks.[19] Blinderman and Cherny explored the existential issues that cancer patients in Israel faced and found that helpful coping strategies could aid the patient to deal with their existential problems.[20] While the above studies examined areas that are connected to coping, they had not exclusively explored the coping strategies used by cancer patients. Focusing specifically on coping is important since each patient may have a different meaning or connotation for their coping strategies that might not match the universally accepted description of that strategy. For example, a study by Stein et  al. they found that while patients from ethnically diverse backgrounds used a spiritual and religious framework to understand their cancer journey, their conceptualization of these strategies varied greatly.[21] In addition, the above research has suggested that coping can influence or predict one’s psychological and health outcomes, highlighting the need to study coping in cancer. The current paper aims to review the suitability and benefits of using qualitative research designs to understand coping with cancer with the help of some key literature in this area. QUALITATIVE RESEARCH IN COPING WITH CANCER The most apt qualitative study in this regard was conducted by Henderson et al. who explored how African American women coped with breast cancer.[22] The authors used the focus group design for data collection with 66 African American women. Focus groups comprise an arbiter and the participants where the former moderates the group’s interactions, discussions and responses to a specific issue.[17] These group interviews form the core data resource for researchers. Henderson et al. defined focus groups as “semi‑structured groups moderated by group leaders in informal settings, with the purpose of collecting information from individuals who shared a common experience” (pp. 642). The reason for choosing this approach, the authors explained, was that African American women felt it was comforting, allowed them to share and contrast their experiences with other participants, and it helped them have a feeling of “normalcy” in their lives. The group interview, lasting about 1.5-2 h, aimed at acquiring information on how the participants coped with breast cancer by asking the participants to respond to statements addressing their illness. The data derived from the interviews was tape‑recorded and fully transcribed. The transcripts were analyzed using content analysis (CA). CA links statistical and qualitative analysis by “making inferences from a focal text to its social context in an objectified manner.”[23] CA is a systematic statistical approach to the transcripts or texts of an interview. CA organizes themes by scrutinizing its rate of recurrence, “intensity” or structure in the text. The themes that emerged were classified based on the coping strategies described by the patients. The CA findings

reported that the most commonly used coping strategies were: Prayer, relying on support networks (like family, friends, and support groups), having a positive outlook and a will to survive, and keeping away from pessimistic people. Following a similar method of data analysis (i.e., CA), Taleghani et al. explored the coping strategies used by newly diagnosed Iranian breast cancer patients (n = 19) through semi‑structured interviews.[24] Semi‑structured interviews consist of the interviewer preparing a schedule of open‑ended questions (e.g., “How do you deal with having cancer?”) so as to allow the interviewee to express their thoughts and feelings freely. Consequently, the interview will have an element of dynamism for which the interviewer needs to improvise the questions carefully whilst respecting the core research question they sought to explore.[25] Using CA, the authors found that the patients coped with their cancer by (i) religious methods (i.e. coming to terms with the disease as something that happened due to God’s will or using spiritual fighting), (ii) ruminating over the illness-this could be by thinking positively (e.g., having hope, positive attitude), purposely forgetting about the illness, having negative thoughts about the cancer (e.g., having fear, feeling hopeless), actively or passively accepting the cancer, and (iii) sought support from their spouse. The authors concluded that most of the participants used positive strategies and it was their religious beliefs and faith that played a pivotal role in coping with cancer. Indeed, the findings of this study suggest that when exploring coping in cancer one must take into account the socio‑cultural environment of the patient. The role of socio‑cultural factors appeared to be a pertinent in Simpson’s study that examined adaptation strategies and beliefs of breast cancer patients and families in Hong Kong.[26] The author noted that in Chinese society the choice of coping strategies was based on their family beliefs. Consequently, using interpretative phenomenological analysis (IPA) for data collection, Simpson interviewed both breast cancer patients (n = 20) and family members (n = 39), of whom at least one person was related to the cancer patient. IPA focuses on the individual’s personal accounts and experiences of a phenomenon (e.g., family beliefs in coping) that is being investigated.[17] In order to allow expressive freedom, patients and families were asked semi‑structured, circuitous questions about the illness, the family experience of the cancer, how it had changed their lives and so on. The interviews were audio‑taped and transcribed verbatim; interviews spoken in Cantonese were translated into English. The transcripts were entered into N‑Vivo (software for qualitative data analysis) and then open coded and analyzed using thematic analysis (TA). TA was used with Gadamer’s method of interpretation of data,[27] in which the analyses of the transcripts were done only by the text and not by the interviewer’s meaning of the text (as in the case of the IPA approach to data analysis). Hence, the researcher is only the “mediator between the text and all the text implies but not as an interpreter of what the participants meant.”[26]

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Thematic analysis mainly clusters data based on themes or patterns that emerge from the interview called super‑ordinate themes (overarching patterns) and subordinate themes (patterns that can be clustered within a super‑ordinate theme).[28] Simpson found that the Chinese philosophy of Neo Confucianism (man is, desires and needs to be in harmony/ balance with the universe) was applied in coping where the patient looked to balance cancer with his/her life. The main coping (or balancing) strategies reported by patients and families in this study were: (i) Cognitive strategies comprising subordinate themes of positivism, being normal, faith in surviving the illness, readjusting the illness to make it a positive thing, decision‑making and relying on spirituality and religion, (ii) affective strategies comprising subordinate themes of sharing feelings and talking about them, addressing the avoidance of talking about cancer and the presence of the members in a physical and emotional way, (iii) behavioral strategies comprising subordinate themes of assigning and changing roles and duties, getting help from the support network and making a stress‑free environment. Coping resources (e.g., social support, information, and religious beliefs) can impact coping processes, that is, the intrapsychic and behaviors that an individual will engage in to manage their stressor.[29] In order to explore these coping processes in cancer, Link et  al. used the concepts of two behavior models,[30] the transactional model of stress and coping developed by Lazarus and Folkman and the theory of planned behavior conceptualized by Ajzen.[7,31] Both these behavior models were conceptualized to explain a person’s choice of coping strategies regarding health‑related problems. The former addresses how individual responds to and handles stressors while the latter focuses on the individual’s plan to execute that behavior (i.e., handling the stressor). With these two behavior models as their foundation, Link et  al. investigated the coping strategies used by cancer patients (n = 44) with particular interest on the factors that influenced their choice and the relationship between these reasons. Data saturation, that is, the point at which the interviews did not expose any new themes,[17] was achieved at 30 participants. Consequently, the remaining 14 interviews served as verification for the research findings. The one‑on‑one, in‑depth, semi‑structured interviews involving open‑ and close‑ended questions, targeted what strategy the patient used to “control” or “deal with” their cancer, with special focus on what the patients did to control the cancer, why did they choose that strategy, and whether other people in the patient’s life helped or did not help with regard to this strategy. With the help of formative analysis of the initial interviews the authors were able to “refine” their questions in subsequent interviews. The grounded theory method was used to analyze the final data. Grounded theory, developed by Glaser and Strauss,[32] allows for novel theories to develop through the “process of category identification and integration (as method) and its product (as theory).”[17] 8

The authors first sorted the data using the Ethnograph v5.0TM computer program. Following this they coded the data and then grouped common patterns into categories, developing themes based on the data accrued. The authors found that the coping strategies were used in five stages and named this process as individualized cancer strategies. These stages consisted of: Reaction to cancer, identifying and evaluating the coping strategies, choosing the strategies and using them. Further, the authors found that the influencing factors on choosing a coping strategy were (i) internal factors, comprising personal findings, past experiences, beliefs, coping mechanisms (namely, information‑seeking, internal/external locus of control and attitudes towards cancer, goals, opinions on illness) and personal controlling factors, and (ii) external factors comprising the influence of others upon the patient and the external controlling factors. The above studies highlight the value of qualitative research designs in exploring cancer patients’ coping strategies. These studies are also representative of psycho‑oncology research that uses a range of methods of data collection (focus groups, semi‑structured interviews, interpretative phenomenology) and data analyses (CA, TA, grounded theory).[33] There are some advantages and disadvantages in using these approaches that need to be considered. For example, focus groups offer patients a comfortable environment that helps them to talk. However, the data gathered from these groups is solely dependent on how the moderator maneuvers the group’s interactions and discussions. A central principle of focus groups is about giving an equal opportunity to all the participants to express their thoughts and feelings in detail while ensuring that they do not stray too far from the topic. The moderator must achieve this fine balance by having a minimum influence on the group process, that is, by only suggesting a topic of discussion and not apportioning participant opportunities to speak. These limitations notwithstanding, focus groups are particularly useful in creating a trustworthy environment for participants that is conducive for sharing their experiences. On the other hand, interviews, especially one‑on‑one semi‑structured interviews, give cancer patients ample opportunity to talk without having to share this space with another participant. The in‑depth information that one can get from these interviews can directly address the research question. However, this hinges on the interviewer being well trained in order to address the risk of the interviewer’s biasthat is, their personal characteristics coming in the way of the interview such as being domineering, not having patience, being unable to pick up on what the patient is saying and so on.[17] The above research suggests that perhaps a combination of IPA for data collection and grounded theory for data analysis might address these issues with flexibility, comprehensiveness, and reflexivity (acknowledging the interviewers contribution to meaning development). As previously described, IPA lets patients express their feelings and gives them a chance to freely talk about their personal accounts and experiences of

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the phenomenon (i.e., coping with cancer), while grounded theory gives scope for generating new theories from the data. However, these approaches are not without limitations. While grounded theory neglects the researcher and places importance on inductive‑positivism, IPA faces the obstacle of language and it cannot explain the “why” as it only focuses on the “how.” Alternate study designs in qualitative psycho‑oncology research are case studies, comparative studies and longitudinal studies. Case studies are conducted with an individual patient and often comprise an in‑depth interview, evaluation of their medical records, observation, and can even include excerpts from patients’ personal writings such as journals or diaries.[34] Case studies have been used to explore specific phenomena such as nondisclosure of cancer,[35] using beliefs and magical thinking to fight cancer and so on.[36] The case study design can also be used to understand the coping strategies used by less researched communities, cultures, faiths and so on. However, this can also be investigated by using comparative studies. Comparative studies in qualitative research are, possibly, the best way to evaluate individual differences in coping with cancer. Though not used in coping with cancer, comparative studies have been used to explore topics such as cultural differences in the experiences of cancer,[37] comparing experiences of different health conditions and so on.[38] Further, if one wanted to explore any changes in coping overtime, qualitative longitudinal study may prove beneficial as the researcher can record coping strategies used by cancer patients at different points in time thereby adding to a rich understanding of coping throughout the cancer trajectory. Indeed, research has successfully used this design to explore a range of topics such as recovery after cancer surgery,[39] desire for hastened death in advanced cancer patients,[40] experiences of head and neck cancer and so on.[41] Correspondingly, there are diverse qualitative methods for data collection such as focused, episodic, group and narrative interviews. Narratives as well as semi‑structured interviews are extensively used qualitative methods of data collection in health‑related research.[25] This is mainly because they are well‑suited for a number of methods of data analysis, there is freedom for the cancer patient to talk, and bias and rationalization on the part of the researcher is reduced. Hence, it gives the researcher a deep understanding of the types of coping styles used and the patient’s personal connotations of these styles. However, the feasibility of these methods of data collection depends on the choice of qualitative data analysis. The most frequently used methods of data analysis in psycho‑oncology research are: CA, TA, theoretical coding (used in grounded theory), IPA and computer‑assisted analysis.[33] CA and TA have both been widely used in cancer research which can be attributed to their flexibility and systematized, rule‑based, transparency of results. Computer‑assisted analysis is extremely efficient in organizing data, saves time, gives scope for taking larger samples and encourages

systematization.[42] Further, emphasizing the flexibility of a qualitative research design to yield optimal results, one can also include one methodology for data collection (e.g., IPA) and another for data analysis (e.g., grounded theory) that may be better suited for the research question and participants. This brings us to the question: Which qualitative approach will help us to gain the most comprehensive, rich understanding of patients’ coping strategies with cancer? In qualitative research the individual and his/her experience plays a central role, hence it would be incorrect to categorize all people as one and try to come up with one single, blanket method. Indeed, it is due to the hand‑in‑hand nature of both advantages and disadvantages of qualitative designs, that a combination of qualitative and quantitative approaches may yield the most thorough understanding of coping in cancer. Research highlights that by virtue of this complimenting nature of a mixed method approach, one can achieve an objective yet deep understanding of diverse areas in psycho‑oncology.[19,43,44] CONCLUSIONS Reviewing the available literature in investigating the coping strategies used by cancer patients, appraising the different qualitative research designs, methods and analyses suggests that it is possible and important to explore this particular area of psycho‑oncology. Qualitative research, drawing from its salient characteristic of not viewing the individual (and their psychological outcomes) as problematic, gives a larger scope of understanding coping with cancer. Indeed, by using various combinations of the many choices in qualitative research along with quantitative methodologies can help us gain a superior, meaningful and a rich understanding of cancer patients’ needs, quality‑of‑life, coping, psychological distress and so on. REFERENCES 1. Devine D, Parker PA, Fouladi RT, Cohen L. The association between social support, intrusive thoughts, avoidance, and adjustment following an experimental cancer treatment. Psychooncology 2003;12:453‑62. 2. Guex P. An Introduction to Psycho‑Oncology. London: Routledge; 1994. 3. Herschbach P, Keller M, Knight L, Brandl T, Huber B, Henrich G, et al. Psychological problems of cancer patients: A cancer distress screening with a cancer‑specific questionnaire. Br J Cancer 2004;91:504‑11. 4. Moorey S, Greer S. Psychological Therapy for Patients with Cancer: A New Approach. 1st ed. Oxford: Heinemann Medical Books; 1989. 5. Tagay S, Herpertz S, Langkafel M, Erim Y, Bockisch A, Senf W, et al. Health‑related Quality of Life, depression and anxiety in thyroid cancer patients. Qual Life Res 2006;15:695‑703. 6. Yen JY, Ko CH, Yen CF, Yang MJ, Wu CY, Juan CH, et al. Quality of life, depression, and stress in breast cancer women outpatients receiving active therapy in Taiwan. Psychiatry Clin Neurosci 2006;60:147‑53. 7. Lazarus RS, Folkman S. Psychological Stress and the Coping Process. New York: Appleton‑Century‑Crofts; 1984. 8. Lyon BL. Stress, coping, and health. In: Rice VH, editor. Handbook of Stress, Coping, and Health. California: Sage Publications; 2000.

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9. Blank TO, Bellizzi KM. After prostate cancer: Predictors of well‑being among long‑term prostate cancer survivors. Cancer 2006;106:2128‑35. 10. Schou I, Ekeberg Ø, Ruland CM. The mediating role of appraisal and coping in the relationship between optimism‑pessimism and quality of life. Psychooncology 2005;14:718‑27. 11. Hedestig O, Sandman PO, Tomic R, Widmark A. Living after external beam radiotherapy of localized prostate cancer: A qualitative analysis of patient narratives. Cancer Nurs 2005;28:310‑7. 12. Juraskova I, Butow P, Robertson R, Sharpe L, McLeod C, Hacker N. Post‑treatment sexual adjustment following cervical and endometrial cancer: A qualitative insight. Psychooncology 2003;12:267‑79. 13. Molassiotis A, Chan CW, Yam BM, Chan ES, Lam CS. Life after cancer: Adaptation issues faced by Chinese gynaecological cancer survivors in Hong Kong. Psychooncology 2002;11:114‑23. 14. Dunkel‑Schetter C, Feinstein LG, Taylor SE, Falke RL. Patterns of coping with cancer. Health Psychol 1992;11:79‑87. 15. Richardson MA, Post‑White J, Grimm EA, Moye LA, Singletary SE, Justice B. Coping, life attitudes, and immune responses to imagery and group support after breast cancer treatment. Altern Ther Health Med 1997;3:62‑70. 16. Navon L. Cultural views of cancer around the world. Cancer Nurs 1999;22:39‑45. 17. Willig C. Introducing Qualitative Research in Psychology: Adventures in Theory and Method. Bukhingham: Open University Press; 2001. 18. Tam Ashing K, Padilla G, Tejero J, Kagawa‑Singer M. Understanding the breast cancer experience of Asian American women. Psychooncology 2003;12:38‑58. 19. Bottomley A. Group cognitive behavioural therapy with cancer patients: The views of women participants on a short‑term intervention. Eur J Cancer Care (Engl) 1998;7:23‑30. 20. Blinderman CD, Cherny NI. Existential issues do not necessarily result in existential suffering: Lessons from cancer patients in Israel. Palliat Med 2005;19:371‑80. 21. Stein EM, Kolidas E, Moadel A. Do spiritual patients want spiritual interventions?: A qualitative exploration of underserved cancer patients’ perspectives on religion and spirituality. Palliat Support Care 2013;p:1‑7. 22. Henderson PD, Gore SV, Davis BL, Condon EH. African American women coping with breast cancer: A qualitative analysis. Oncol Nurs Forum 2003;30:641‑7. 23. Bauer MW, Gaskell G. Qualitative Researching with Text, Image and Sound: A Practical Handbook. London: SAGE Publications; 2005. 24. Taleghani F, Yekta ZP, Nasrabadi AN. Coping with breast cancer in newly diagnosed Iranian women. J Adv Nurs 2006;54:265‑72. 25. Wengraf T. Qualitative Research Interviewing: Biographic Narrative and Semi‑Structured Methods. London: Sage Publications; 2001. 26. Simpson P. Hong Kong families and breast cancer: Beliefs and adaptation strategies. Psychooncology 2005;14:671‑83. 27. Gadamer HG. Truth and Method. New York: Continuum; 1999. 28. Aronson J. A pragmatic view of thematic analysis. Qual Rep 1994;2:1‑3.


29. Taylor SE, Stanton AL. Coping resources, coping processes, and mental health. Annu Rev Clin Psychol 2007;3:377‑401. 30. Link LB, Robbins L, Mancuso CA, Charlson ME. How do cancer patients choose their coping strategies? A qualitative study. Patient Educ Couns 2005;58:96‑103. 31. Ajzen I. The theory of planned behavior. Organ Behav Hum Decis Process 1991;50:179‑211. 32. Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Transaction Publishers; 2009. 33. Lin HR, Bauer‑Wu SM. Psycho‑spiritual well‑being in patients with advanced cancer: An integrative review of the literature. J Adv Nurs 2003;44:69‑80. 34. Zucker DM. Using case study methodology in nursing research. Qual Rep 2001;6:1‑12. 35. Hallenbeck J, Arnold R. A request for nondisclosure: Don’t tell mother. J Clin Oncol 2007;25:5030‑4. 36. Salander P. Using beliefs and magical thinking to fight cancer distress‑A case study. Psychooncology 2000;9:40‑3. 37. Ashing‑Giwa KT, Padilla G, Tejero J, Kraemer J, Wright K, Coscarelli A, et al. Understanding the breast cancer experience of women: A qualitative study of African American, Asian American, Latina and Caucasian cancer survivors. Psychooncology 2004;13:408‑28. 38. Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: Prospective qualitative interview study of patients and their carers in the community. BMJ 2002;325:929. 39. Taylor C, Richardson A, Cowley S. Restoring embodied control following surgical treatment for colorectal cancer: A longitudinal qualitative study. Int J Nurs Stud 2010;47:946‑56. 40. Nissim R, Gagliese L, Rodin G. The desire for hastened death in individuals with advanced cancer: A longitudinal qualitative study. Soc Sci Med 2009;69:165‑71. 41. Molassiotis A, Rogers M. Symptom experience and regaining normality in the first year following a diagnosis of head and neck cancer: A qualitative longitudinal study. Palliat Support Care 2012;10:197‑204. 42. Silver C, Fielding N. Using computer packages in qualitative research. In: Willig C, Stainton‑Rogers W, editors. The Sage Handbook of Qualitative Research in Psychology. London: Sage Publications; 2008. p. 334‑51. 43. Gall TL, Cornblat MW. Breast cancer survivors give voice: A qualitative analysis of spiritual factors in long‑term adjustment. Psychooncology 2002;11:524‑35. 44. Braun M, Hasson‑Ohayon I, Perry S, Kaufman B, Uziely B. Motivation for giving birth after breast cancer. Psychooncology 2005;14:282‑96. Cite this article as: Chittem M. Understanding coping with cancer: How can qualitative research help?. J Can Res Ther 2014;10:6-10. Source of Support: Nil, Conflict of Interest: None declared.

Journal of Cancer Research and Therapeutics - January-March 2014 - Volume 10 - Issue 1

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Understanding coping with cancer: how can qualitative research help?

Research in psycho-oncology investigates the psycho-social and emotional aspects of cancer and how this is related to health, well-being and overall p...
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