Copyright B 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins
Brenda Sabo, PhD, RN
Waiting and Liminality A Phenomenon of Spousal Caregiving?
K E Y
W O R D S
Background: Waiting is an inevitable reality for cancer patients and their
Liminality
families. To date, a paucity of research has explored the meaning given to the
Spousal caregivers
emotional experience of waiting by spouses who provide care for cancer patients.
Waiting
Objective: The purpose of this discussion article is to introduce readers to the concept of liminality as a mechanism to enhance understanding of the experience of waiting. Liminality may be thought of as the space betwixt and between. Methods: The findings from a mixed-methods exploratory study that explored the experience of caregiving among spouses of hematopoietic stem cell transplant recipients are used to illustrate the experience of waiting. Results: Waiting is discussed from the perspective of disembodied (clock/calendar time) and embodied (how waiting is lived) time. Liminality is introduced as a transitional and transformational phase where individuals create meaning out of the experience of waiting. Conclusion: Although waiting may be a universal experience, our understanding of the experience within the context of cancer remains a poorly understood phenomenon. Lost in disembodied time are the myriad and complex nuances of the individual experience. Conceptualizing waiting as embodied and liminal may offer an alternative perspective that may enhance our understanding of the experience particularly as it applies to caregivers of cancer patients. Implications for Practice: By enhancing our understanding of the experience of spousal caregiving, in particular waiting, effective interventions may be developed to better support spousal caregivers across the cancer care continuum to reduce psychosocial distress.
Author Affiliation: School of Nursing, Dalhousie University, and Psychosocial Oncology Team, Cancer Care Program, Capital District Health Authority, Halifax, Nova Scotia, Canada. Funding support was received from International Society of Nurses in Cancer Care & Canadian Blood and Marrow Transplant Group. The author has no conflicts of interest to disclose.
Correspondence: Brenda Sabo, PhD, RN, School of Nursing, Dalhousie University, Room 109, Forrest Bldg, 5869 University Ave, PO Box 15000, Halifax, Nova Scotia, Canada B3H 4R2 ([email protected]). Accepted for publication February 4, 2013. DOI: 10.1097/NCC.0b013e31828ee266
184 n Cancer NursingTM, Vol. 37, No. 3, 2014 Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Sabo
W
aiting is an inevitable reality for cancer patients and their families. Not only do cancer patients wait for diagnoses, but they also wait for appointments, test results, surgery, treatment, word of disease remission, or recurrence. If cancer patients learn anything from their experiences of waiting, it is how to be a ‘‘patient patient.’’1 Such individuals are perceived as synonymous with a ‘‘good’’ or ‘‘compliant’’ patientVone who ‘‘waits quietly and passively.’’1(p1063) Extending the perception beyond the patient to encompass family caregivers would suggest that a good caregiver is one who does not rock the proverbial boat while remaining quietly on the sidelines in readiness to step in and provide care when called upon. In a healthcare system that has come to rely extensively on family members, and in particular, spouses, for physical, psychological, and emotional care of patients, the notion of waiting passively on the sidelines would appear counterintuitive. Traditional models have shifted from the healthcare professional as knower to a more holistic, inclusive approach, which actively involves both patient and family members in decision making around treatment choices.2,3 Although healthcare policy encourages healthcare professionals to work collaboratively in partnership with patients and families, this reality is frequently impeded by a lack of understanding of the ‘‘significance of the interpersonal relationships and interactions of the role of the relationship throughout the course of the illness experience.’’4(p2024) It would follow that if healthcare professionals do not fully understand the relationship between patient and caregiver, and they desire a quiet, passive, and unchallenging patient, then that expectation could apply to the caregiver as well. In light of the interpersonal relationship between patient and caregiver, typically the spouse, it would seem reasonable to assume that the experience of waiting would be a shared one. Although waiting may at times be shared, it is frequently an isolating, solitary, and introspective experience. Few studies have explored the meaning given to the emotional experience of waiting by cancer patients, families, or healthcare professionals.5 This might suggest that the word has an implicit or taken-forgranted meaning because waiting may be considered a universal experience. Each of us has, at one time or another, experienced waiting as a part of day-to-day life. Although we may share the experience of waiting, the meaning given to the experience is influenced by many factors such as context and relationships, as well as how the individual situates the self within space, place, and time. The paucity of research exploring the phenomenon of waiting and its meaning is of concern, however, when one considers the potential consequences of waiting for cancer patients and family caregivers, which may include depression, anxiety, feelings of panic, and uncertainty.6,7 The following discussion is intended to add to the extant literature on waiting within the context of spousal caregiving. Examples from the narratives of a recent mixed-method study that explored the experience of spousal caregivers of hematopoietic stem cell transplant recipients8 will be used to illustrate the waiting experience. In the study by Sabo et al,8 time existed as both disembodied and embodied, the former a more frequent conceptualization within healthcare systems. I will introduce the
Waiting and Liminality
readers to the notion of liminality, which may be helpful in understanding the experience of waiting among spousal caregivers. Finally, implications for nursing practice, education, and research will be provided.
Waiting and the Phenomenon of Time
n
A preliminary scan of the research literature for the years 2000 to 2011 using the words cancer, waiting, experience, and/or meaning identified 288 articles in PubMed and 75 articles in CINAHL. The majority of articles focused on wait times, watchful waiting, time to recurrence, decision making (information needs), and quality of life from the patient perspective. In contrast, fewer than 10 articles explored the meaning of waiting as experienced by caregivers of cancer patients. Even fewer studies were found to focus on understanding the emotional dimensions of waiting and its consequences. In most articles, the term ‘‘waiting’’ was not defined; rather, it appeared to be presented as self-evident or taken for granted. In its most general sense, the word wait has been defined as ‘‘to take up a concealed position in order to make an unforeseen attack, or to be in readiness to intercept one’s enemy or intended prey in passing; to lurk in ambush; to watch with hostile intent; to look intently.’’9 This definition highlights the experience of those who wait, readying themselves for cancer’s attackVthe diagnosis of cancer or its recurrence. The experience of waiting has been described as a time of uncertainty or limbo,10 loss of control,11 emotionally draining,12 a rite of passage,1 an altered sense of time,13 and a rollercoaster ride.14 Time is embedded throughout the human experience, yet its influence may carry different meanings dependent on where the individual situates himself/herself along the cancer trajectory. Time is an integral part of the human experience. It surrounds us, informs the meaning of our lived experience,15 and imbues all human behavior as the ‘‘silent partner in everything we do.’’16(p399) Yet, it is interesting to note how its influence can be reduced or decontextualized through statistics. For example, stochastic modeling was used to theoretically test the predictability of duration and variability of waiting on the production of stress.17 Stochastic modeling is a statistical process involving the use of probability (eg, occurrence of stress) and random variables (eg, duration and variability of waiting) to test a hypothesis. In this instance, the human behavioral response was reduced to a series of mathematical equations; the ‘‘lived’’ component essentially stripped from the equation. How is it that waiting, a human experience lived out in the day-to-day life, can be reduced to a mathematical equation or a probability? Perhaps the answer lies in our reliance on the clock and calendar time. The insidious nature of clock and/or calendar time has been conceptualized within a linear monochromatic model extending from the past to the future.18 Time is divided into segments such as years, hours, or minutes, each possessing a beginning and an end. Thus, when an event such as caregiving occurs within a linear monochromatic model, it must logically have a beginning and an end, the former becoming Cancer NursingTM, Vol. 37, No. 3, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
185
the past, the latter the future. As a result, the focus shifts to tasks, procedures, and schedules ‘‘with dehumanizing effects as the external order of the clock is enforced at the cost of blindness to the humanity of its members.’’18(p34) Linear time is not about individuality or holistic philosophical beliefs. Rather, it is about imposing a set of value orientations against which behavior is measured and, by default, experienced. Richman19(p17) writes in his ethnographic study of occupations that ‘‘time is a weapon of domination for controlling and coaxing others’’ and has become firmly embedded within work life since the dawn of industrialization.20 It features prominently within the healthcare system and healthcare delivery serving as a measurable outcome, structural framework, and mechanism for regulating behavior of professionals.20,21 If one considers the established cultural preferences driving normative forces within the healthcare system, it is not surprising that clock or calendar time has come to dominate.
Giving Voice to the Experience of Waiting: Disembodied and Embodied Time
n
The notion of disembodied or clock time possesses a linear functionality that may best be described as finite, limited by a procedure or event (eg, wait times), decontextualized, and objective, the embodied subjective quality removed.22 In contrast, embodied time refers to how an individual experiences time. Within caring professions such as nursing, practice ‘‘is still dominated by the temporal culture of medicine, a culture deeply rooted in clock time.’’23(p153) Nurses have described acculturation as a mechanism for managing their time in a linear fashion that moved them systematically from beginning to end of shift or task offering a relentless unstoppable routine.24 Such an approach distances nurses from patients by objectifying care work as time-delineated tasks and discounted the subjective nature of nursing practice that is grounded in the relationship between nurse-patient-family. Similar to the experience of nurses, spousal caregivers of hematopoietic stem cell transplant recipients highlighted how they became acculturated to healthcare system norms. Waiting became a relentless march of time, constituted by the progression of days, months, or years. It gave rise to ambiguity and uncertainty because of its lack of conformity or fit between 2 worldsVthe life world of the caregiver and that of the healthcare system: You have entered a black hole in which no rules applyI if not today, tomorrow, or next year or 10 years. It is not going to end well. It is not going to be over just because the transplant is over. It is going to keep going; that’s the scary bitI8 Waiting appeared constrained by the structured boundaries of calendar time. It was something to be negotiated, perhaps feared; cultural norms were absent. Without the benefit of rules, that is the sick role as time limited, the caregiver is set adrift, his/ her future a paradox of the expected and unexpected. The ap-
plication of a lens utilizing the notion of disembodied time would suggest that waiting was over since the transplant procedure was completed. Yet, the reality for the caregiver was that waiting had just begunVit became both disembodied then reembodied. The former reflecting calendar time, the latter lived out as contextual and relational. Waiting may also be perceived as the anticipation of a return to normal, a socially constructed phenomenon defined by normative values within the sick role: Iis it going to be like this [and] for how long? We know the recovery period takes months, even a year or 2. Sometimes it is just so hopeless to look ahead and think. You don’t want to wish time away, but sometimes you just wish the next few months would be over with.8 The sick role temporarily legitimizes the disruption of an individual’s autonomy and incapacity to meet socially expected roles, norms, and values by virtue of illness.25 At the same time, it protects society from ‘‘motivational contagion,’’25(p275) which has the potential to ‘‘destabilize the motivation of the healthy not to fall ill’’26(p77); the lack of motivation derived from secondary gains embedded in the sick role (eg, exemption, care, and attention), which may appear to be an attractive solution to the need to meet individual and societal obligations. But what if this transitory state of hoping and waiting is an entrance to the betwixt and between, or liminal space?
Liminality: A Place and Space for Waiting
n
The concept of liminality is derived from social anthropology and may provide a useful framework from which to consider the experience of spousal caregiving. Liminality can be defined as a space ‘‘betwixt and between the normal day-to-day cultural and social states.’’27(p94) The individual is perceived as standing at the threshold or margins of time, space, and place. It is a place of ambiguity, where societal roles, cultural expectations, and status are temporarily suspended.28,29 These periods of disruption may be attributed to illness or crisis resulting in the abandonment of sociocultural structures and routine. Liminality, from the Latin word for threshold, ‘‘lemes,’’ suggests a sense of being in between the old world and a place one has yet to arrive. Frequently associated with the spiritual, it has come to reflect a sacred place where transformation genuinely occurs.30 Little and colleagues31 further clarify the concept of liminality as encompassing 2 process phases: acute and sustained. In the former, subjective time is discontinued: ‘‘powerful forces operate to change perceptions of time, space, and personal values.’’31(p1492) Acute liminality appears to be similar to a singularity or black hole where the familiar rules of a continuum of time and space no longer apply.32 This conceptualization was clearly articulated in the preceding example of waiting as an entrance into a black hole where time was disrupted, no longer experienced within the context of normative rules. Similarly, a second example suggested the caregiver’s desire to shift time and space in an effort to reconcile his/her role with socially constructed roles
186 n Cancer NursingTM, Vol. 37, No. 3, 2014 Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Sabo
pertaining to caregiving. The apparent lack of conformity with expected rules, that is, cessation of the caregiver role, resulted in tension and disquiet perhaps best described as a space of acute liminality. In contrast, sustained liminality occurs following the acute phase. It has been described as ‘‘a prolonged dialectic between body and self.’’31(p1493) In this subjective space, meaning is constructed and reconstructed. Although the concept of sustained liminality was originally conceived and applied to cancer survivors, it has relevance for cancer caregivers. For example, the following text highlights the tension between the self and body as this caregiver awaits the impending death of her spouse: I don’t have rose-colored glasses on. In looking to the future, I am not sure there is one. I hate to look at it, and I push back from that. I have gone there and I don’t like what I seeI I just want to leave it aloneI push it to the side. The caregiver was caught betwixt the present and future, between a need to temporarily escape reality while residing within a reality bereft of rose-colored glasses. Arthur Frank33(p136) speaks of an inability to escape the identity of cancer patientness, where constant reminders merge the reality of cancer survivor with cancer patient (the need for continued surveillance). Similarly, this caregiver was unable to escape the reality framed by impending loss. At the same time, there was an expressed need to transform that reality, to push back and live it differently. Within sustained liminal space, the caregiver may begin the transformative process by creating and recreating adaptive mechanisms to accommodate waiting for loss. Liminal space is also about embodied space. It is a space where confrontation occurs, where the unfamiliar evokes fear, dread, and/or distress, a space where personal limitations are challenged. For some caregivers, waiting may elicit a wide range of emotions from anger, to guilt, fear, and uncertainty, to a generalized state of numbness. Waiting literally engulfs their lives: Iit [the experience of waiting] is like a soldier in a foxhole while the artillery is going off around him/her. You are ready to pray to a God you have never believed in. You are grasping at straws. There is hopelessness, desperation [in the waiting]I The possibility that one’s spouse may not survive the cancer war results in fear that persists as part of the caregiver’s everyday reality. Caregiving may evoke a wide range of emotions leading to further reflection: Probably the hardest part since we have been home is the whole range of emotions I felt from despair to sadness. I just wondered if things were ever going to get better, be the sameI it is normal to feel resentful, I guess, to feel all these emotionsI Existing within liminal space affords the individual a mechanism for understanding, for bridging the gulf between the former and future self.34 Liminal space is both transitional and transformative. The individual continually negotiates a new view of self and their roles as they ascribe meaning to that experience.
Waiting and Liminality
For caregivers, liminal space affords an opportunity to create meaning out of the illness experience of the partner. Little and colleagues31 perceived: Sustained liminalityI as a prolonged dialectic between body and self, in which a narrative is constructed to give meaning to the challenging and changing biographical, physical and existential phenomena in which illnessI evolves in the locus of the body.31(pp1490-1493) When the experience of waiting is conceptualized within the context of liminality, spousal caregivers are able to frame their experience as a reflection of embodied illness. In turn, the experience may become more meaningful, opening up an intersubjective space wherein the private can be become shared and greater understanding achieved.31
Implications for Nursing Research, Practice, and Education
n
In light of existing gaps in knowledge and understanding of the meaning of waiting, research is needed to shed light on what may be a taken-for-granted experience. Studies that capture the life world and lived experience are necessary if effective targeted interventions can be implemented to better support spousal caregivers across the cancer continuum. Furthermore, a clearly articulated understanding of the phenomenon is needed for the development of continuing education programs for healthcare professionals to facilitate their ability to not only recognize psychosocial distress but meet the psychological, emotional, and spiritual needs of spousal caregivers as they wait for care. Overreliance on narrow parameters of waiting, such as wait times and time to relapse/recurrence, although necessary, does not adequately reflect the human experience embedded within waiting nor does it contribute to humanizing the experience. Finally, acknowledgement of the challenges faced by spousal caregivers as well as screening for distress by healthcare professionals may be a necessary first step to reducing adverse consequences among caregivers.
n
Conclusion
Although waiting may be a universal experience, our understanding of the experience within the context of cancer remains a poorly understood phenomenon. Often taken for granted, continued reliance on a socially constructed depiction of time as decontextualized, encompassed by boundaries (beginning and end), and objective (characteristic of the healthcare system) only serves to reduce the experience of waiting to more linear concepts such as wait times, watchful waiting, and time to relapse. Lost in disembodied time are the myriad and complex nuances of the individual experience. Conceptualizing waiting as embodied and liminal may offer an alternative perspective that may enhance our understanding of the experience particularly as it applies to caregivers of cancer patients. Waiting, like liminality, suggests a transitional, transformative space where individuals Cancer NursingTM, Vol. 37, No. 3, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
187
create and recreate the self as they bridge the gulf between the old world and the new. ACKNOWLEDGMENTS
The author thanks her colleagues, Drs Deborah McLeod and Stephen Couban, who helped to make the original study on which this discussion is based a success.
References 1. Mulcahy C, Parry D, Glover T. The ‘‘patient patient’’: the trauma of waiting and the power of resistance for people living with cancer. Qual Health Res. 2010;20(8):1062Y1075. 2. Armstrong P, Armstrong H. Thinking It Through: Women, Care and Caring in the New Millennium. Halifax, NS, Canada: MCEWH; 2001. 3. Donelan K, Hill C, Hoffman C, Scoles K, Feidman P, Levine C. Challenged to care: informal caregivers in a changing healthcare system. Health Aff. 2002;21:222Y231. 4. Hubbard G, Illingworth N, Rowa-Dewar R, Forbar L, Kearney N. Treatment decision-making in cancer care: the role of the carer [published online ahead of print]. J Clin Nurs. 2011;19:2023Y2031. 5. Catania C, De Pas T, Minchella I, et al. ‘‘Waiting and the waiting room: how do you experience them?’’ Emotional implications and suggestions from patients with cancer [published online ahead of print]. J Cancer Educ. 2011;26(2):388Y394. 6. Lebel S, Jakubovits G, Rosbergera Z, et al. Waiting for a breast biopsy: psychosocial consequences and coping strategies. J Psychosom Res. 2003; 55:437Y443. 7. Bailey D, Wallace M, Mishel M. Watching, waiting and uncertainty in prostate cancer. J Clin Nurs. 2007;16:734Y741. 8. Sabo B, McLeod D, Couban S. The experience of caring for a spouse undergoing hematopoietic stem cell transplantation: opening Pandora’s box. Cancer Nurs. 2013;36(1):29Y40. 9. Oxford English Dictionary: The Definitive Record of the English Language Oxford. Oxford University Press; 2011. http://www.oed.com.ezproxy.library .dal.ca/view/Entry/225148?rskey=QE5GfO&result=1#eid. Accessed March 7, 2013. 10. McQueen A. Waiting for a cancer diagnosis. Cancer Nurs Pract. 2009;8(4):16Y23. 11. Krumwiede N, Meiers S, Eggenberger S, et al. Turbulent waiting: rural families experiencing chemotherapy-induced neutropenia. Oncol Nurs Forum. 2004;31(6):1145Y1152. 12. Larsson M, Hedelin B, Athlin E. Needing a hand to hold: lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Cancer Nurs. 2007;30(4):324Y334.
13. Wittmann M, Vollmer T, Schweiger C, Hiddemann W. The relation between the experience of time and psychological distress in patients with hematological malignancies. Palliat Support Care. 2006;4(4):357Y363. 14. Rajacich D. The Meaning of Waiting for Women Along the Breast Cancer Journey. Hamilton, ON, Canada: McMaster University; 2007. 15. Heidegger M. Being and Time. Oxford: Basil Blackwell; 1962. 16. McGrath J, Kelly J. Temporal context and temporal patterning. Toward a time-centered perspective of social psychology. Time Soc. 1992;1: 399Y420. 17. Suck R, Holling H. Stress caused by waiting: a theoretical evaluation of a mathematical model. J Math Psychol. 1997;41:280Y286. 18. Hall E. The Dance of Life. New York: Anchor Press; 1984. 19. Richman J. Traffic Wardens: An Ethnography of Street Administration. Manchester: Manchester University Press; 1983. 20. Elias N. Time: An Essay. Oxford: Basil Blackwell Ltd; 1992. 21. Davies K. Capturing women’s lives: a discussion of time and methodological issues. Womens Stud Int Forum. 1996;19(6):579Y588. 22. Klitzman R. ‘‘Patient-time’’, ‘‘doctor-time’’, and ‘‘institution-time’’: perceptions and definitions of time among physicians who become patients. Patient Educ Couns. 2007;66:147Y155. 23. Jones A. Time to think: temporal considerations in nursing practice and research. J Adv Nurs. 2001;33(2):150Y158. 24. Young V. Good Enough Nursing: An Exploration of the Ways That Nurses Negotiate Interprofessional Relationships in Managing Critical Incidents. Luton: University of Luton; 2000. 25. Parsons T. Social Structure and Personality. New York: The Free Press of Glencoe; 1964. 26. Zick Varul M. Talcott Parsons, the sick role and chronic illness. Body Soc. 2010;16(2):72Y94. 27. Turner V. Process, Performance and Pilgrimage. New Delhi, India: Concept Publishing; 1979. 28. Kelly A. Living loss: an exploration of the internal space of liminality. Mortality. 2008;13(4):335Y350. 29. Kleinman A. The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic books; 1988. 30. Rohr R. Everything Belongs: The Gift of Contemplative Prayer. Chestnut Ridge, NY: Crossroad Publ Co; 2003. 31. Little M, Jordens C, Paul K, Montgomery K, Philipson B. Liminality: a major category of the experience of cancer illness. Soc Sci Med. 1998; 47(10):1485Y1494. 32. Hawking S. A Brief History of Time. London: Bantam Books; 1988. 33. Frank A. The Wounded Storyteller: Body, Illness and Ethics. Chicago, IL: Chicago University Press; 1995. 34. Mattingly C. The narrative nature of clinical reasoning. In: Mattingly C, Fleming M, eds. Clinical Reasoning: Forms of Inquiry in a Therapeutic Practice. Philadelphia, PA: FA Davis; 1994.
188 n Cancer NursingTM, Vol. 37, No. 3, 2014 Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Sabo
Brenda Sabo, PhD, RN
Waiting and Liminality A Phenomenon of Spousal Caregiving?
K E Y
W O R D S
Background: Waiting is an inevitable reality for cancer patients and their
Liminality
families. To date, a paucity of research has explored the meaning given to the
Spousal caregivers
emotional experience of waiting by spouses who provide care for cancer patients.
Waiting
Objective: The purpose of this discussion article is to introduce readers to the concept of liminality as a mechanism to enhance understanding of the experience of waiting. Liminality may be thought of as the space betwixt and between. Methods: The findings from a mixed-methods exploratory study that explored the experience of caregiving among spouses of hematopoietic stem cell transplant recipients are used to illustrate the experience of waiting. Results: Waiting is discussed from the perspective of disembodied (clock/calendar time) and embodied (how waiting is lived) time. Liminality is introduced as a transitional and transformational phase where individuals create meaning out of the experience of waiting. Conclusion: Although waiting may be a universal experience, our understanding of the experience within the context of cancer remains a poorly understood phenomenon. Lost in disembodied time are the myriad and complex nuances of the individual experience. Conceptualizing waiting as embodied and liminal may offer an alternative perspective that may enhance our understanding of the experience particularly as it applies to caregivers of cancer patients. Implications for Practice: By enhancing our understanding of the experience of spousal caregiving, in particular waiting, effective interventions may be developed to better support spousal caregivers across the cancer care continuum to reduce psychosocial distress.
Author Affiliation: School of Nursing, Dalhousie University, and Psychosocial Oncology Team, Cancer Care Program, Capital District Health Authority, Halifax, Nova Scotia, Canada. Funding support was received from International Society of Nurses in Cancer Care & Canadian Blood and Marrow Transplant Group. The author has no conflicts of interest to disclose.
Correspondence: Brenda Sabo, PhD, RN, School of Nursing, Dalhousie University, Room 109, Forrest Bldg, 5869 University Ave, PO Box 15000, Halifax, Nova Scotia, Canada B3H 4R2 ([email protected]). Accepted for publication February 4, 2013. DOI: 10.1097/NCC.0b013e31828ee266
184 n Cancer NursingTM, Vol. 37, No. 3, 2014 Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Sabo
W
aiting is an inevitable reality for cancer patients and their families. Not only do cancer patients wait for diagnoses, but they also wait for appointments, test results, surgery, treatment, word of disease remission, or recurrence. If cancer patients learn anything from their experiences of waiting, it is how to be a ‘‘patient patient.’’1 Such individuals are perceived as synonymous with a ‘‘good’’ or ‘‘compliant’’ patientVone who ‘‘waits quietly and passively.’’1(p1063) Extending the perception beyond the patient to encompass family caregivers would suggest that a good caregiver is one who does not rock the proverbial boat while remaining quietly on the sidelines in readiness to step in and provide care when called upon. In a healthcare system that has come to rely extensively on family members, and in particular, spouses, for physical, psychological, and emotional care of patients, the notion of waiting passively on the sidelines would appear counterintuitive. Traditional models have shifted from the healthcare professional as knower to a more holistic, inclusive approach, which actively involves both patient and family members in decision making around treatment choices.2,3 Although healthcare policy encourages healthcare professionals to work collaboratively in partnership with patients and families, this reality is frequently impeded by a lack of understanding of the ‘‘significance of the interpersonal relationships and interactions of the role of the relationship throughout the course of the illness experience.’’4(p2024) It would follow that if healthcare professionals do not fully understand the relationship between patient and caregiver, and they desire a quiet, passive, and unchallenging patient, then that expectation could apply to the caregiver as well. In light of the interpersonal relationship between patient and caregiver, typically the spouse, it would seem reasonable to assume that the experience of waiting would be a shared one. Although waiting may at times be shared, it is frequently an isolating, solitary, and introspective experience. Few studies have explored the meaning given to the emotional experience of waiting by cancer patients, families, or healthcare professionals.5 This might suggest that the word has an implicit or taken-forgranted meaning because waiting may be considered a universal experience. Each of us has, at one time or another, experienced waiting as a part of day-to-day life. Although we may share the experience of waiting, the meaning given to the experience is influenced by many factors such as context and relationships, as well as how the individual situates the self within space, place, and time. The paucity of research exploring the phenomenon of waiting and its meaning is of concern, however, when one considers the potential consequences of waiting for cancer patients and family caregivers, which may include depression, anxiety, feelings of panic, and uncertainty.6,7 The following discussion is intended to add to the extant literature on waiting within the context of spousal caregiving. Examples from the narratives of a recent mixed-method study that explored the experience of spousal caregivers of hematopoietic stem cell transplant recipients8 will be used to illustrate the waiting experience. In the study by Sabo et al,8 time existed as both disembodied and embodied, the former a more frequent conceptualization within healthcare systems. I will introduce the
Waiting and Liminality
readers to the notion of liminality, which may be helpful in understanding the experience of waiting among spousal caregivers. Finally, implications for nursing practice, education, and research will be provided.
Waiting and the Phenomenon of Time
n
A preliminary scan of the research literature for the years 2000 to 2011 using the words cancer, waiting, experience, and/or meaning identified 288 articles in PubMed and 75 articles in CINAHL. The majority of articles focused on wait times, watchful waiting, time to recurrence, decision making (information needs), and quality of life from the patient perspective. In contrast, fewer than 10 articles explored the meaning of waiting as experienced by caregivers of cancer patients. Even fewer studies were found to focus on understanding the emotional dimensions of waiting and its consequences. In most articles, the term ‘‘waiting’’ was not defined; rather, it appeared to be presented as self-evident or taken for granted. In its most general sense, the word wait has been defined as ‘‘to take up a concealed position in order to make an unforeseen attack, or to be in readiness to intercept one’s enemy or intended prey in passing; to lurk in ambush; to watch with hostile intent; to look intently.’’9 This definition highlights the experience of those who wait, readying themselves for cancer’s attackVthe diagnosis of cancer or its recurrence. The experience of waiting has been described as a time of uncertainty or limbo,10 loss of control,11 emotionally draining,12 a rite of passage,1 an altered sense of time,13 and a rollercoaster ride.14 Time is embedded throughout the human experience, yet its influence may carry different meanings dependent on where the individual situates himself/herself along the cancer trajectory. Time is an integral part of the human experience. It surrounds us, informs the meaning of our lived experience,15 and imbues all human behavior as the ‘‘silent partner in everything we do.’’16(p399) Yet, it is interesting to note how its influence can be reduced or decontextualized through statistics. For example, stochastic modeling was used to theoretically test the predictability of duration and variability of waiting on the production of stress.17 Stochastic modeling is a statistical process involving the use of probability (eg, occurrence of stress) and random variables (eg, duration and variability of waiting) to test a hypothesis. In this instance, the human behavioral response was reduced to a series of mathematical equations; the ‘‘lived’’ component essentially stripped from the equation. How is it that waiting, a human experience lived out in the day-to-day life, can be reduced to a mathematical equation or a probability? Perhaps the answer lies in our reliance on the clock and calendar time. The insidious nature of clock and/or calendar time has been conceptualized within a linear monochromatic model extending from the past to the future.18 Time is divided into segments such as years, hours, or minutes, each possessing a beginning and an end. Thus, when an event such as caregiving occurs within a linear monochromatic model, it must logically have a beginning and an end, the former becoming Cancer NursingTM, Vol. 37, No. 3, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
185
the past, the latter the future. As a result, the focus shifts to tasks, procedures, and schedules ‘‘with dehumanizing effects as the external order of the clock is enforced at the cost of blindness to the humanity of its members.’’18(p34) Linear time is not about individuality or holistic philosophical beliefs. Rather, it is about imposing a set of value orientations against which behavior is measured and, by default, experienced. Richman19(p17) writes in his ethnographic study of occupations that ‘‘time is a weapon of domination for controlling and coaxing others’’ and has become firmly embedded within work life since the dawn of industrialization.20 It features prominently within the healthcare system and healthcare delivery serving as a measurable outcome, structural framework, and mechanism for regulating behavior of professionals.20,21 If one considers the established cultural preferences driving normative forces within the healthcare system, it is not surprising that clock or calendar time has come to dominate.
Giving Voice to the Experience of Waiting: Disembodied and Embodied Time
n
The notion of disembodied or clock time possesses a linear functionality that may best be described as finite, limited by a procedure or event (eg, wait times), decontextualized, and objective, the embodied subjective quality removed.22 In contrast, embodied time refers to how an individual experiences time. Within caring professions such as nursing, practice ‘‘is still dominated by the temporal culture of medicine, a culture deeply rooted in clock time.’’23(p153) Nurses have described acculturation as a mechanism for managing their time in a linear fashion that moved them systematically from beginning to end of shift or task offering a relentless unstoppable routine.24 Such an approach distances nurses from patients by objectifying care work as time-delineated tasks and discounted the subjective nature of nursing practice that is grounded in the relationship between nurse-patient-family. Similar to the experience of nurses, spousal caregivers of hematopoietic stem cell transplant recipients highlighted how they became acculturated to healthcare system norms. Waiting became a relentless march of time, constituted by the progression of days, months, or years. It gave rise to ambiguity and uncertainty because of its lack of conformity or fit between 2 worldsVthe life world of the caregiver and that of the healthcare system: You have entered a black hole in which no rules applyI if not today, tomorrow, or next year or 10 years. It is not going to end well. It is not going to be over just because the transplant is over. It is going to keep going; that’s the scary bitI8 Waiting appeared constrained by the structured boundaries of calendar time. It was something to be negotiated, perhaps feared; cultural norms were absent. Without the benefit of rules, that is the sick role as time limited, the caregiver is set adrift, his/ her future a paradox of the expected and unexpected. The ap-
plication of a lens utilizing the notion of disembodied time would suggest that waiting was over since the transplant procedure was completed. Yet, the reality for the caregiver was that waiting had just begunVit became both disembodied then reembodied. The former reflecting calendar time, the latter lived out as contextual and relational. Waiting may also be perceived as the anticipation of a return to normal, a socially constructed phenomenon defined by normative values within the sick role: Iis it going to be like this [and] for how long? We know the recovery period takes months, even a year or 2. Sometimes it is just so hopeless to look ahead and think. You don’t want to wish time away, but sometimes you just wish the next few months would be over with.8 The sick role temporarily legitimizes the disruption of an individual’s autonomy and incapacity to meet socially expected roles, norms, and values by virtue of illness.25 At the same time, it protects society from ‘‘motivational contagion,’’25(p275) which has the potential to ‘‘destabilize the motivation of the healthy not to fall ill’’26(p77); the lack of motivation derived from secondary gains embedded in the sick role (eg, exemption, care, and attention), which may appear to be an attractive solution to the need to meet individual and societal obligations. But what if this transitory state of hoping and waiting is an entrance to the betwixt and between, or liminal space?
Liminality: A Place and Space for Waiting
n
The concept of liminality is derived from social anthropology and may provide a useful framework from which to consider the experience of spousal caregiving. Liminality can be defined as a space ‘‘betwixt and between the normal day-to-day cultural and social states.’’27(p94) The individual is perceived as standing at the threshold or margins of time, space, and place. It is a place of ambiguity, where societal roles, cultural expectations, and status are temporarily suspended.28,29 These periods of disruption may be attributed to illness or crisis resulting in the abandonment of sociocultural structures and routine. Liminality, from the Latin word for threshold, ‘‘lemes,’’ suggests a sense of being in between the old world and a place one has yet to arrive. Frequently associated with the spiritual, it has come to reflect a sacred place where transformation genuinely occurs.30 Little and colleagues31 further clarify the concept of liminality as encompassing 2 process phases: acute and sustained. In the former, subjective time is discontinued: ‘‘powerful forces operate to change perceptions of time, space, and personal values.’’31(p1492) Acute liminality appears to be similar to a singularity or black hole where the familiar rules of a continuum of time and space no longer apply.32 This conceptualization was clearly articulated in the preceding example of waiting as an entrance into a black hole where time was disrupted, no longer experienced within the context of normative rules. Similarly, a second example suggested the caregiver’s desire to shift time and space in an effort to reconcile his/her role with socially constructed roles
186 n Cancer NursingTM, Vol. 37, No. 3, 2014 Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Sabo
pertaining to caregiving. The apparent lack of conformity with expected rules, that is, cessation of the caregiver role, resulted in tension and disquiet perhaps best described as a space of acute liminality. In contrast, sustained liminality occurs following the acute phase. It has been described as ‘‘a prolonged dialectic between body and self.’’31(p1493) In this subjective space, meaning is constructed and reconstructed. Although the concept of sustained liminality was originally conceived and applied to cancer survivors, it has relevance for cancer caregivers. For example, the following text highlights the tension between the self and body as this caregiver awaits the impending death of her spouse: I don’t have rose-colored glasses on. In looking to the future, I am not sure there is one. I hate to look at it, and I push back from that. I have gone there and I don’t like what I seeI I just want to leave it aloneI push it to the side. The caregiver was caught betwixt the present and future, between a need to temporarily escape reality while residing within a reality bereft of rose-colored glasses. Arthur Frank33(p136) speaks of an inability to escape the identity of cancer patientness, where constant reminders merge the reality of cancer survivor with cancer patient (the need for continued surveillance). Similarly, this caregiver was unable to escape the reality framed by impending loss. At the same time, there was an expressed need to transform that reality, to push back and live it differently. Within sustained liminal space, the caregiver may begin the transformative process by creating and recreating adaptive mechanisms to accommodate waiting for loss. Liminal space is also about embodied space. It is a space where confrontation occurs, where the unfamiliar evokes fear, dread, and/or distress, a space where personal limitations are challenged. For some caregivers, waiting may elicit a wide range of emotions from anger, to guilt, fear, and uncertainty, to a generalized state of numbness. Waiting literally engulfs their lives: Iit [the experience of waiting] is like a soldier in a foxhole while the artillery is going off around him/her. You are ready to pray to a God you have never believed in. You are grasping at straws. There is hopelessness, desperation [in the waiting]I The possibility that one’s spouse may not survive the cancer war results in fear that persists as part of the caregiver’s everyday reality. Caregiving may evoke a wide range of emotions leading to further reflection: Probably the hardest part since we have been home is the whole range of emotions I felt from despair to sadness. I just wondered if things were ever going to get better, be the sameI it is normal to feel resentful, I guess, to feel all these emotionsI Existing within liminal space affords the individual a mechanism for understanding, for bridging the gulf between the former and future self.34 Liminal space is both transitional and transformative. The individual continually negotiates a new view of self and their roles as they ascribe meaning to that experience.
Waiting and Liminality
For caregivers, liminal space affords an opportunity to create meaning out of the illness experience of the partner. Little and colleagues31 perceived: Sustained liminalityI as a prolonged dialectic between body and self, in which a narrative is constructed to give meaning to the challenging and changing biographical, physical and existential phenomena in which illnessI evolves in the locus of the body.31(pp1490-1493) When the experience of waiting is conceptualized within the context of liminality, spousal caregivers are able to frame their experience as a reflection of embodied illness. In turn, the experience may become more meaningful, opening up an intersubjective space wherein the private can be become shared and greater understanding achieved.31
Implications for Nursing Research, Practice, and Education
n
In light of existing gaps in knowledge and understanding of the meaning of waiting, research is needed to shed light on what may be a taken-for-granted experience. Studies that capture the life world and lived experience are necessary if effective targeted interventions can be implemented to better support spousal caregivers across the cancer continuum. Furthermore, a clearly articulated understanding of the phenomenon is needed for the development of continuing education programs for healthcare professionals to facilitate their ability to not only recognize psychosocial distress but meet the psychological, emotional, and spiritual needs of spousal caregivers as they wait for care. Overreliance on narrow parameters of waiting, such as wait times and time to relapse/recurrence, although necessary, does not adequately reflect the human experience embedded within waiting nor does it contribute to humanizing the experience. Finally, acknowledgement of the challenges faced by spousal caregivers as well as screening for distress by healthcare professionals may be a necessary first step to reducing adverse consequences among caregivers.
n
Conclusion
Although waiting may be a universal experience, our understanding of the experience within the context of cancer remains a poorly understood phenomenon. Often taken for granted, continued reliance on a socially constructed depiction of time as decontextualized, encompassed by boundaries (beginning and end), and objective (characteristic of the healthcare system) only serves to reduce the experience of waiting to more linear concepts such as wait times, watchful waiting, and time to relapse. Lost in disembodied time are the myriad and complex nuances of the individual experience. Conceptualizing waiting as embodied and liminal may offer an alternative perspective that may enhance our understanding of the experience particularly as it applies to caregivers of cancer patients. Waiting, like liminality, suggests a transitional, transformative space where individuals Cancer NursingTM, Vol. 37, No. 3, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
187
create and recreate the self as they bridge the gulf between the old world and the new. ACKNOWLEDGMENTS
The author thanks her colleagues, Drs Deborah McLeod and Stephen Couban, who helped to make the original study on which this discussion is based a success.
References 1. Mulcahy C, Parry D, Glover T. The ‘‘patient patient’’: the trauma of waiting and the power of resistance for people living with cancer. Qual Health Res. 2010;20(8):1062Y1075. 2. Armstrong P, Armstrong H. Thinking It Through: Women, Care and Caring in the New Millennium. Halifax, NS, Canada: MCEWH; 2001. 3. Donelan K, Hill C, Hoffman C, Scoles K, Feidman P, Levine C. Challenged to care: informal caregivers in a changing healthcare system. Health Aff. 2002;21:222Y231. 4. Hubbard G, Illingworth N, Rowa-Dewar R, Forbar L, Kearney N. Treatment decision-making in cancer care: the role of the carer [published online ahead of print]. J Clin Nurs. 2011;19:2023Y2031. 5. Catania C, De Pas T, Minchella I, et al. ‘‘Waiting and the waiting room: how do you experience them?’’ Emotional implications and suggestions from patients with cancer [published online ahead of print]. J Cancer Educ. 2011;26(2):388Y394. 6. Lebel S, Jakubovits G, Rosbergera Z, et al. Waiting for a breast biopsy: psychosocial consequences and coping strategies. J Psychosom Res. 2003; 55:437Y443. 7. Bailey D, Wallace M, Mishel M. Watching, waiting and uncertainty in prostate cancer. J Clin Nurs. 2007;16:734Y741. 8. Sabo B, McLeod D, Couban S. The experience of caring for a spouse undergoing hematopoietic stem cell transplantation: opening Pandora’s box. Cancer Nurs. 2013;36(1):29Y40. 9. Oxford English Dictionary: The Definitive Record of the English Language Oxford. Oxford University Press; 2011. http://www.oed.com.ezproxy.library .dal.ca/view/Entry/225148?rskey=QE5GfO&result=1#eid. Accessed March 7, 2013. 10. McQueen A. Waiting for a cancer diagnosis. Cancer Nurs Pract. 2009;8(4):16Y23. 11. Krumwiede N, Meiers S, Eggenberger S, et al. Turbulent waiting: rural families experiencing chemotherapy-induced neutropenia. Oncol Nurs Forum. 2004;31(6):1145Y1152. 12. Larsson M, Hedelin B, Athlin E. Needing a hand to hold: lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Cancer Nurs. 2007;30(4):324Y334.
13. Wittmann M, Vollmer T, Schweiger C, Hiddemann W. The relation between the experience of time and psychological distress in patients with hematological malignancies. Palliat Support Care. 2006;4(4):357Y363. 14. Rajacich D. The Meaning of Waiting for Women Along the Breast Cancer Journey. Hamilton, ON, Canada: McMaster University; 2007. 15. Heidegger M. Being and Time. Oxford: Basil Blackwell; 1962. 16. McGrath J, Kelly J. Temporal context and temporal patterning. Toward a time-centered perspective of social psychology. Time Soc. 1992;1: 399Y420. 17. Suck R, Holling H. Stress caused by waiting: a theoretical evaluation of a mathematical model. J Math Psychol. 1997;41:280Y286. 18. Hall E. The Dance of Life. New York: Anchor Press; 1984. 19. Richman J. Traffic Wardens: An Ethnography of Street Administration. Manchester: Manchester University Press; 1983. 20. Elias N. Time: An Essay. Oxford: Basil Blackwell Ltd; 1992. 21. Davies K. Capturing women’s lives: a discussion of time and methodological issues. Womens Stud Int Forum. 1996;19(6):579Y588. 22. Klitzman R. ‘‘Patient-time’’, ‘‘doctor-time’’, and ‘‘institution-time’’: perceptions and definitions of time among physicians who become patients. Patient Educ Couns. 2007;66:147Y155. 23. Jones A. Time to think: temporal considerations in nursing practice and research. J Adv Nurs. 2001;33(2):150Y158. 24. Young V. Good Enough Nursing: An Exploration of the Ways That Nurses Negotiate Interprofessional Relationships in Managing Critical Incidents. Luton: University of Luton; 2000. 25. Parsons T. Social Structure and Personality. New York: The Free Press of Glencoe; 1964. 26. Zick Varul M. Talcott Parsons, the sick role and chronic illness. Body Soc. 2010;16(2):72Y94. 27. Turner V. Process, Performance and Pilgrimage. New Delhi, India: Concept Publishing; 1979. 28. Kelly A. Living loss: an exploration of the internal space of liminality. Mortality. 2008;13(4):335Y350. 29. Kleinman A. The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic books; 1988. 30. Rohr R. Everything Belongs: The Gift of Contemplative Prayer. Chestnut Ridge, NY: Crossroad Publ Co; 2003. 31. Little M, Jordens C, Paul K, Montgomery K, Philipson B. Liminality: a major category of the experience of cancer illness. Soc Sci Med. 1998; 47(10):1485Y1494. 32. Hawking S. A Brief History of Time. London: Bantam Books; 1988. 33. Frank A. The Wounded Storyteller: Body, Illness and Ethics. Chicago, IL: Chicago University Press; 1995. 34. Mattingly C. The narrative nature of clinical reasoning. In: Mattingly C, Fleming M, eds. Clinical Reasoning: Forms of Inquiry in a Therapeutic Practice. Philadelphia, PA: FA Davis; 1994.
188 n Cancer NursingTM, Vol. 37, No. 3, 2014 Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Sabo
