Survivor Identity in the Medical Landscape: A Conceptual Model
Dana R. Dillard MSW, LCSW
Poster Presented November 2016 at the Council on Social Work Education Conference in Atlanta, GA
Innovations in medicine and technology shifted the culture of health, increasing the likelihood individuals live through and beyond what may have historically been terminal diagnoses or fatal injuries. With advances in healthcare come challenges and also opportunities to identify structural issues embedded in the sociocultural context contributing to disparities, unmet need for services, and questions of identity related to chronic health conditions. Given social work’s historical commitment to collaborative, interdisciplinary, and interprofessional practice, it is essential for the profession to refine conceptual models that provide foundations for deeper understanding of the complex circumstances associated with health, access to services, and social location for those grappling with health issues. Hinging on the power and influence embedded in language in the sociocultural context of health and illness, this poster presents a conceptual model to inform education, research, and intervention, in this area.
Jaccard and Jacoby’s (2010) approach to theory construction and model-building was applied. Data were derived from observational sources, symbolic interaction (SI) theory, a review of the literature, and a small set of informal interviews. The model was developed through an iterative process involving repeated clarification of concepts and constructs, and articulating the pathway between constructs to increase conceptual clarity related to the use of “survivor language” in the context of health.
Author one has practiced in the burn community for over 15 years, grounding the impetus for this project in her experiences and systematic observations over time. A comprehensive review of the literature examining the use of survivor language in the medical realm primarily focuses on cancer diagnoses, and is predominantly informed by identity theory, nested in the SI system of thought (Appleton & Flynn, 2014; Morris et al., 2014). Building on observations, themes from informal interviews, and the literature, key elements of SI were extracted to inform model development.
SI rests upon the premises that human self-hood and action are based on the meanings that things have for them, which are articulated via constructed symbols – a primary form of which is language – derived from social interaction, and whereby meanings are negotiated with others through an interpretative and relational process (Blumer, 1969). SI assumes that people can only develop a self/identity through social interaction, and this interaction is informed by shared meaning. In the context of SI, symbols are powerful social currency – language as a symbol is imbued with assumptions, values, and power. Through Mullan’s (1985) article in the New England Journal of Medicine, the construct of “cancer survivor” was born. At nearly the same time, the notion of “burn survivor” emerged with the creation of the Phoenix Society for Burn Survivors in 1977. Since then, pervasive use of the survivor construct in both the cancer and burn communities generated a surge in survivor language, and consequently a culture of survivor identity (Appleton & Flynn, 2014; Feuerstein, 2007; Morris et al., 2014).
Survivor as a label is assumed to promote empowerment and advocacy, rendering victim as a label, disenfranchising. The author’s observations led to questioning the validity of these assumptions, prompting recognition of the need for greater conceptual clarity. Survivor labeling suggests positive implications, but can also be understood as deterministic with an emphasis on fixed identity, rather than making space for identity that is fluid, relationship and context dependent, and outside a survivor/victim binary. Implicit in the shift from victim language to survivor language is the message that negatively perceived labels are unacceptable, where positively perceived labels invite universal acceptance. Social work as a profession is ethically committed to self-determination and promoting person-centered language, therefore it is essential to consider the impact of labels, whether positively or negatively perceived, on the experience of clients. Specifically, it is important to consider who is positioned as decision-maker in determining what is normative, and the subsequent consequences for identity.
The conceptual model begins with the assumption of an individual’s illness/injury diagnosis, acknowledging differences in etiology, then indicates that, whether or how a survivor identity is adopted is moderated by engagement in the community of “survivors.” When considering the complex intersection of factors informing relationships to health and well-being, as well as to illness, it is essential for social workers to maintain a critically conscious stance. Language as a primary symbol is embedded with meaning and underlying assumptions carried forward into lived and relational space, which can have profound bearing on social work education and practice. Models that inform conceptual clarity and an opportunity to unravel pathways associated with the power of language are critical to person-centered practice and research.
Appleton, L., & Flynn, M. (2014). Searching for the new normal: Exploring the role of language and metaphors in becoming a cancer survivor. European Journal of Oncology Nursing, 18(4), 378–384. http://doi.org/10.1016/j.ejon.2014.03.012
Blumer, H. (1969). Symbolic interactionism: Perspective and method. Berkeley: University of California Press.
Feuerstein, M. (2007). Defining cancer survivorship. Journal of Cancer Survivorship, 1(1), 5–7. http://doi.org/10.1007/s11764-006-0002-x
Jaccard, J., & Jacoby, J. (2010). Theory construction and model-building skills: A practical guide for social scientists. NY: Guilford.
Morris, B. A., Lepore, S. J., Wilson, B., Lieberman, M. A., Dunn, J., & Chambers, S. K. (2014). Adopting a survivor identity after cancer in a peer support context. Journal of Cancer Survivorship, 8(3), 427–436. http://doi.org/10.1007/s11764-014-0355-5
Mullan, F. (1985). Seasons of survival: Reflections of a physician with cancer. New England Journal of Medicine, 313(4), 270-273.