Themes of Liminality: Stories from Cancer Family Caregiver Narratives

Abstract

Cancer family caregivers dwell in an evolving landscape of ambiguity and in-between-ness, as ‘betwixt and between,’ in a space of unknowing. This space of unknowing exists within a transformational threshold of liminality, between what was known prior to the cancer and what will be known and embodied in the future. Theoretically grounded in Unitary Caring Science, this study used narrative inquiry alongside photo elicitation to co-create cancer caregiver narratives and identify themes of liminality. Four thematic threads of liminality were identified as woven within and across the cancer caregiver narratives; stories of paradox, time warp, life disruption, and waiting in silence.

Introduction

A cancer family caregiver’s (FCG) life can be disrupted by the cyclical uncertainties related to the ever-changing landscape of illness^1,2,3 and the evolving cancer treatments.^4,5 The uncertain journey of cancer FCGs has been described as an “emotional and psychological rollercoaster” which never really ends when caring for loved ones with advanced cancer.^6(p.289) Existing in the space that bridges ongoing shifts in health, between the familiar and the forthcoming, has been described as a state of liminality. Thus, it is important to comprehend how cancer FCG’s experience life altering transitions due to illness within the temporal framework known as liminality, “when the past is left behind and the future state has yet to emerge.”^7(p.2) The focus of this paper is to explore the phenomenon of liminality through research of cancer caregiver narratives.

Nursing is known to be a humanizing discipline and profession of caring and healing whereby we accompany unitary human beings during living and dying transitions though relational transpersonal caring.⁸ By further understanding the holistic lived experiences of FCGs, we can contribute to their emotional and spiritual wellbeing and healing. The discipline of nursing has evolved to the explication of Unitary Caring Science as its most mature theoretical and moral-ethical foundation that draws upon a worldview of relationality, caring, and non-duality⁹ which is an excellent fit for understanding FCG’s human experience of liminality in illness-related life transitions.

Background and Literature Review of Liminality

Informed by the seminal work of Van Gennep,¹⁰ the anthropologically-rooted concept of liminality hinges upon the understanding that transitional and transformational life experiences bridge time and space, ‘betwixt and between,’¹¹ through cultural and social ritual processes. Building upon Van Gennep’s studies of the rites of passage and Turner’s¹¹ understanding of liminality as a transition to a new social status, Frankenburg¹² explored liminality to describe illness as a disrupting period of life in which structure and routine are abandoned. This work catapulted others in healthcare ^{7,13,14,15,16,17,18,19} to consider how the notion of liminality informs patients and caregivers in conceptualizing illness through the nature of subjective experiences, as living ‘in-between.’

There are few studies including cancer FCGs that explore the concept of liminality. Gibbons et al.⁷ qualitative meta-synthesis of 26 international studies found the rite of passage of caregiving to be all consuming as it introduces dramatic changes. Cancer FCGs represented 190 of the sample size in this study of 635 caregivers. This study noted four themes within the liminal phase that depicted the rite of passage into the caregiving role: role ambiguity, social changes, uncertainty regarding future goals and aspirations, and suffering as a way of life.⁷ Sabo et al.²⁰ used the findings of their mixed-methods study to introduce liminality as a transitional and transformational space where spousal caregivers of hematopoietic stem cell transplant recipients construct and reconstruct meaning in the embodied experience of waiting. A post study exploratory article¹⁸ further examined the study’s result theme of “waiting: a black hole with no rules” through the lens of liminality. Dahlborg Lyckhage and Lindahl ¹⁷ explored palliative care caregiver narratives while caring for their loved ones at end of life, wherein three of the five participants shared their experiences retrospectively during bereavement. This study describes the FCGs position of waiting for the unknown as being in liminality. Liminal space was marked by uncertainty and an ambiguous future, one of living in loss, and a “break of life history.” ^17(p.281) These FCGs shared experiences of dwelling in liminality as an ambiguous space which introduced a social, material, and existential turn. These studies significantly add to the scientific body of knowledge for nursing practice regarding liminality yet highlight the need to move beyond conceptualizing liminality as a rite of passage and explore how caregivers of cancer loved ones evolve and transform while dwelling in liminality.

Leaning into the extent of literature informed by sacred and spiritual traditions, liminality has been described as a threshold of change where the process of living evolves from a secular to a sacred space.^10,21 The Benedictine monastic tradition practice of stopping one thing before starting another is known as ‘statio’.^22(p.9) This holy pause upon a threshold acknowledges the displacing space of transition as a sacred dimension, full of possibilities and mystery for the sake of transformation of consciousness.²³ A metaphor for a threshold is a door, and between the door is dawn and dusk. The space in the threshold is holy darkness, rich with fertile ground for the seeds of revelations and transformation. The holy darkness,²² or still point,²⁴ within the liminal thin space of the transition, is open for miracles, mystery, transformation, transcendence, and preparations for what will come. The space of liminality is the boundary, the margin or thin place, of living physically between the material and spiritual worlds.²² Dwelling in the space of liminality makes the holy pause, the sense of reverence, and the voice of the Divine or the Great Mystery more accessible.²³ The threshold of liminality is also the threshold of unknowing,²³ as what was known prior is no longer present and what will be known in the future is yet to be known.

This paper aims to contribute to new knowledge by identifying themes of liminality within and across caregiver narratives. We fill a gap in the literature about the lived experiences of liminality among cancer FCGs and advance disciplinary knowledge of the phenomenon. Furthermore, we illuminate a greater understanding of the contextual and holistic human experience of caring in family relationships affected by advanced cancer. This inquiry evolves from previous conceptualizations of liminality that were theoretically grounded in Gennep’s¹⁰ and Turner’s²⁵ works. We explored the phenomenon through the theoretical and ethical lens of Unitary Caring Science and the extant literature informed by spiritual traditions as a sacred and transformational period of life and mode of living that is introduced by illness thresholds.

Methodology

Theoretical Framework

Nursing science inquiry situated within the Unitary Transformative paradigm ²⁶ requires a nonfragmentary view of health to see illness and disease as evolving non-dichotomous patterns and expressions of the whole. ²⁷ The study authors’ worldviews and ways of being in the world align with the Unitary Transformative paradigm that is operationalized through research informed by Unitary Caring Science. We recognize and engage Unitary Caring Science as the discipline of nursing in its most mature ontological, theoretical, and moral-ethical foundation that draws upon a worldview of caring, interconnection of relationships, non-duality, and belonging.^9,28 Knowledge development stemming from Unitary Caring Science and relational ethic brings to the profession and practice of nursing the very knowledge that is missing, unique, and needed in health care today. It brings forth with clarity the difference that nursing makes and has on human wellbecoming distinct but complementary to other professional and disciplinary perspectives. Unitary Caring Science offers a new story of science and human existence in which human caring is the highest ethical and moral mandate that can be offered to sustain society, humanity, and the earth.⁹ The integration and evolution of the parallel and intersecting theoretical perspectives of Roger’s Science of Unitary Human Beings²⁹ and Watson’s Theory of Transpersonal Caring³⁰ underpin Unitary Caring Science to invite a new discourse for nursing science and knowledge development. The inquiry was undergirded by Cowling et al.’s³¹ description of the Unitary Caring Science nexus of evolving concepts. These concepts include caring, wholeness, pattern, relationship, meaning, consciousness, transformation, and transcendence.³¹

As Unitary Caring Science informed nurse researchers, we engaged in a philosophical quest for truth that embraces the human and spiritual values of goodness, care, compassion, dignity, respect, beauty, and love. ⁹ Unitary Caring Science supported us to operate from an expanded and awakened consciousness of an evolved universe that honors the collective oneness and non-local consciousness of all beings and nature. Furthermore this new way of thinking encourages our human consciousness to a deeper sacred relationship and connection with the highest level of consciousness as the Infinite, as Source, or Great Mystery within and surrounding all life. ²⁴

Grounded by a transpersonal caring and relational Unitary Caring ontological stance, we espoused to serve humankind and support research participants’ evolving patterns and experiences of self and place in the world. ^28,32 We embraced epistemological pluralism to guide Unitary Caring inquiry and enrich scientific endeavors that challenged the empirical worldview of modern medicine, ⁹ while critiquing the status quo by being open to all ways of knowing and being, inviting the metaphysical and a higher consciousness to unknowing and non-knowing that unites the heart and mind. Facilitated through a caring relationship as a mutual partnership and an unfolding process between the researcher and the participant, a fertile ground for new possibilities to emerge for action was co-created, wherein health revealed in illness can potentiate the dynamic process of meaning. ^27,33 We reviewed and constructed stories of life events which facilitated movement through evolving higher levels of consciousness, resulting in transformation and expanding consciousness. ³¹

Design

This study used narrative inquiry³⁴ as a caring and relational methodological approach congruent with Unitary Caring Science theoretical framework³⁵ to co-create cancer caregiver narratives through semi-structured, in-depth interviews with participants. Narrative inquiry is a qualitative approach that supports the creation and telling of stories and the exploration of the meaning of the produced stories within the social, cultural, and historical context from wherein the story is co-created.³⁴ We incorporated the use of a post-modern arts-based research method, photo elicitation,³⁶ to evoke memories of caregiving experiences to support and empower the participants in creating their narratives of personal meaning. Each of the participants were invited to share photos during their interviews, representing their caring experiences. Photo elicitation prompted the caregivers to share hidden and private stories of caregiving that they may not have shared otherwise. Narrative thematic analysis³⁴ was used to explore the emergent thematic threads of liminality within and across the caregiver narratives.

Sampling Strategy

This study used a strategy of purposeful, intentional sampling of participants. Eligible participants were those who identified as: a) someone who was actively providing care (currently caring) for their loved one with cancer at the time of study enrollment, b) someone who was providing care for an adult who had a diagnosis of advanced cancer for a minimum of three months before study enrollment, c) over the age of 18 years old, d) with the ability to understand and speak the English language, e) able to participate in an hour long interview either face-to-face in person or face-to-face via a virtual platform, f) have access to a digital camera, and g) have access to a smartphone or computer with a camera if the participant chose the virtual platform. Participants who did not have a digital camera or did not want to participate in photo elicitation were not excluded.

Potential participants were recruited through the use an invitational recruitment flyer that was: a) distributed to cancer patients and their accompanying family members in a regional cancer center in Eastern North Carolina, b) displayed in public and digital spaces, and c) posted on Research Match, an online tool which matches interested participants with recruiting research studies. While in narrative inquiry a set sample size is not indicated,³⁴ we aimed to enroll 5-15 participants in order to gain contextual, narratively grounded insight into the phenomenon of liminality and obtain a range of views and personal experiences of caring for loved ones with cancer. Twenty-six interested and potential participants contacted the first author and of these 5 participants were eligible, enrolled, and completed the study. Reasons for exclusion included less than 3 months in the caregiver role, the person being cared for was deceased, limited stage cancer or pediatric status of the care recipient, and failure to enroll and complete the study. Semi-structured, in-depth interviews were completed between the first author and the participant, averaging 60 minutes (45-90 minutes). We encouraged self empowerment and human agency by inviting the participants to choose the time and setting of the interviews. Three interviews were completed in-person (a private space in an outdoor coffee shop, participant’s house outdoor deck, and a private alcove in a cancer clinic waiting room) and two through the Zoom live-video virtual platform. The participants incorporated 3 to 10 personal photos of their choice in their interviews, used to explore layers of personal meaning and understanding of their caregiving experiences.

Narrative Inquiry and Data Analysis

The process of engaging in narrative inquiry was informed by Riessman’s³⁷ five levels of representation: a) attending to experience, b) telling about experience, c) transcribing experience, d) analyzing experience, and e) reading experience. Narratives were co-created between the first author and the participants through a relational and caring dialogue. Undergirded by the evolving concepts of Unitary Caring Science,³¹ the interviews began with an open-ended question to invite extended accounts and details of participants' lived and holistic caregiving experiences (see Table 1). Embracing narrative inquiry as a methodology congruent with our theoretical framework³⁵ and the Unitary Transformative paradigm, the interviewer made an explicit turn towards embracing a relational human-caring ontology³² by honoring the humanity of the narrator and creating open narrative space where authentic listening, commentary, and reflection were used to produce meaningful narratives created through ‘being-with’ between the researcher as audience and the narrator as the participant. By following the stream of dialogue and limiting interview prompts which can contribute to an asymmetrical power relationship, the interviewer fostered mutuality through collaborative and reciprocal dialogue. Gently introduced interview prompts and probes helped facilitate the participants to create meaning of their stories.

Table 1.

Interview Guide; To Explore for Themes of Liminality

Interview Open Ended Questions Can you tell me your story of caring for your loved one with cancer, starting from the first information of their illness? 1 Can you tell me your story (or your experiences of) caring for your loved one who has cancer? 2 Can you remember a particular time that you felt like the life you knew was no longer present?

Optional Probes Can you tell me how caring for your loved one has impacted you, your life? How do you feel with not-knowing (or uncertainty, ambiguity)? What brings you comfort? Your spirituality? Your thoughts and plans about the future? Your values?

The interviews were digitally recorded and manually transcribed. The messy talk, disfluencies, and utterances of the transcripts were removed or cleaned up to produce an easily readable narrative text. ³⁴ This process of clean-up required the first author to remain active and reflexive in the analysis. The narrative texts were then reordered into temporally ordered and coherent accounts through the creation of metastories, or recreated hybrid-stories of the whole story, into renderings that allowed for comparisons across narratives.³⁷ Utilizing narrative thematic analysis,³⁴ the narratives were explored within and across for themes of liminality by paying attention to thematic threads..

Trustworthiness

Through reflexive, deductive, and inductive approaches, we moved back and forth between the narrative text as primary data, field notes and journaling as secondary data, the theory informing the study and phenomenon of interest, and historical content that informed the interpretation of the themes within the narrative text.³⁸ Rigor was enhanced through bi-weekly virtual collaborative meetings between CW and the methodological expert (RJ), in which the field notes, journal entries, and the interview transcripts were discussed through a critical reflexive practice. The researchers adopted reflexive practices to encourage the self-conscious assessment of their subjectivity and assumptions, while critiquing the multifaceted and contextual factors that brought this study and its findings into being. A thorough representation of the narrative text was obtained by staying true to the voice of the participants. We used thick descriptions from each participant’s interview by representing their actual words in stretches of non-identifiable quotes. Additionally, we invited the participants to share their photos with the researcher for the first time during the interview. The act of eliciting the power of the unveiling of the photos to the participant was a means of facilitating research collaboration and contributed to bias control.

Ethical Considerations

The verbal informed consent addressed the data collection completed in the two modality options, the use of notes, audio recordings, and participant-shared photos as directed by the Colorado Multiple Institutional Review Board (#22-0756). While the photos remain in the ownership of the participant, the consent indicated permission to publish specified photographs to promote the outcomes of the study. Transcript data and the participant photos were de-identified of names, places, institutions, identifiable body parts, and cancer-type. No patient protected information was obtained.

Findings

The five FCG participants (identified here by pseudonyms) included: two male spouses of females (Mitchell and Ron), one female spouse of a male (Susan), one female second-cousin of a male (Kanika), and one female daughter who cared for her mother (Jane). The participants were between 54 and 63 years of age; length of relationship with their care recipient averaged 39 years (20-50). Through participant reporting, the care recipients’ cancers were diverse and described as serious and non-curable, to include lymphoma, breast, colon, and renal. One of the care-recipients had two concomitant cancers. The time of known cancer diagnosis averaged 14 months (4-24 months); each of these participants considered themselves the primary caregiver of their care recipient since date of first medical appointment. Religious affiliation was inquired, wherein three identified with none, one with Christianity, and one with Buddhism. Four of the participants were Caucasian non-Hispanic, and one was African American non-Hispanic.

Four thematic threads of liminality were identified within and across the co-created cancer caregiver narratives: stories of paradox, time warp, life disruption, and waiting in silence. We introduce an overview of the meaning of the thematic thread followed by small stories from within individual narratives as mirrors reflecting our wholistic understanding.

Stories of Paradox

Living-in-between is a paradoxical process, as noted by these caregivers’ stories of consciously and unconsciously negotiating between ideas and positions that contained opposites. These paradoxical stories situated within a liminal and transformational landscape illuminate how cancer FCGs hold space for juxtaposing ideologies and oscillate between contradictory modes of presence, beliefs, and understandings.

Susan shared how her new life mantra is “All will be well.” Please see Figure 1, which is a photo of Susan’s that she took on a walk at the beach and shared during her storytelling. Yet she rejected cancer as part of her abiding in wellness by positioning it in conflict with definition of being well. She framed cancer as a life interruption instead of accepting its presence as part of her journey. Susan positioned herself as someone who chooses to live her life with a “glass half full” perspective, yet she was honest that she is waiting for the “other shoe to drop.” Susan has tried to honor her husband’s emotional changes as he lived with serious illness by engaging in a reflective and meditative practice. However, when caught in the spiral of ‘what if’ thinking, she quickly reverts to catastrophic ‘future tripping’ thoughts and makes reactive plans in response to these thoughts.

Figure 1.

Susan’s photo.

Ron positions his wife’s cancer as part of God’s plan, yet he often questions why cancer was not part of his personal medical history instead of hers. “It was a shock because her and I both thought with my side of the family having cancer and her side not having cancer, that if anyone got cancer it would be me.” “Both of us expected if anybody got it…would be me.” Ron sees his wife’s decline and recognizes that her options for oncological treatment are very limited. While he tries to make meaning of this through his previous experience with his father’s decline from cancer, Ron resists his father’s narrative as informing his wife’s journey. He continues to hope for the opposite, for things to return to normal. “They want her to take this experimental chemo pill, but she can’t take it. She gets sick every time she takes it. The doctor told us after my daddy had this cancer that they got everything. And of course, we found out they didn’t.”

Time Warp

These caregiver narratives were situated in the illness narratives of their loved ones and often presented as small stories that shifted back and forth in time and space. The stories were marked by moments of transformative silence as these caregivers attempted to make sense of their lives within the chaos and ambiguity introduced by the cancer illness, described by one participant as a “time warp.” The narratives contained non-linear interpretations of the lived experience of caring, exhibiting how time and space spiral in and out of daily lived experiences and are interwoven into the fabric of caring. These non-linear experiences often manifested in non-linear narratives that connect thematic threads with illustrative narratives of experience.

The thematic thread woven through Mitchell’s narrative was non-linear as well. Mitchell found chronological time to be a challenging factor in fashioning his caregiver narrative. He often took pauses and requested to go backwards, to inject, or repeat previous told stories to create new meaning of the chaotic illness and its chaotic timeline which reflected the embodiment of chaos at that time in his life. “Well, I should take one step back to that, just explaining our situation.” COVID-19, as a time period, was interwoven throughout his caring experience, introducing another layer within the liminal landscape which contributed to his sense of temporal chaos. Mitchell shared stories of how he attempts to keep his mind present in the moment while sharing how he believes thinking about and imagining future moments are a “luxury he cannot afford.” For Mitchell, “hope is dangerous” when hope is used to project one’s wishes onto the future instead of living in and accepting the present. Mitchell finds comfort and meaning in circular and spiral forms as they reflect the universal and continual experience of life, which resists the status quo of linearity. Figure 2 is a photo of Mitchell’s that he took while walking in the woods, which he used to prompt his stories about hope and meaning.

Figure 2.

Mitchell’s photo.

Kanika’s understanding of her cousin’s cancer experience in the present was influenced by her knowledge gained through her caring roles in the past. As a healthcare provider, she has cared for patients who have had similar cancers. Temporal markers became ambiguous as her present experience collided with her past to inform meaning in the now.

When the surgeon revealed that he could not do surgery at this time, because the films showed…not only did he have a sizeable tumor in the rectum but that he also had lung involvement and liver involvement. And so I remember putting my hand on his shoulder and I’m looking at the surgeon because it’s sinking in for me, based on my experience.

Life Disruption

The caregiver narratives contain stories situated within a landscape of unknowns, as the life known before cancer was shattered and no longer visible. The event of experiencing cancer shifts a person’s understanding of themselves, their relationships, and their world. This disruption often requires meaning re-creation, as caregivers and people living with and alongside someone with cancer start to let go of their life before cancer and inhabit the landscape of unknowns. Each of these caregivers told stories of their lives being shattered or disrupted by the entrance of cancer illness. The illness of cancer was so uprooting that their prior understanding, their prior way of being in the world seemed completely gone.

Jane lived over 1200 miles away from her mother’s residence and due to the restrictions and lockdown during the early COVID-19 pandemic she had not seen her mother in person in over a year. When Jane arrived at the hospital to see her mother for the first time after she received the startling call from emergency healthcare responders, she was disturbed by her mother’s physical state. “They pulled the covers down, and I was just like utterly shocked. I was so shocked that I almost didn’t know how to respond.” Jane was viscerally disrupted by visually seeing her mother’s fungating and bleeding breast tumor. The physical presence of her mother’s illness was impossible to ignore. She knew at that moment in time that her mother’s cancer would shift her life course. Despite being a new wife, a mother of a son in college, and having an ailing father, Jane’s energy and attention became primarily directed to the care and wellbeing of her mother.

Susan’s life and her plans for her future were abruptly changed by her husband Tim’s illness. Whereas they were on a journey to find a diagnosis for his symptoms, the moment she found out that her husband had a brain mass was a shock and disruption to Susan’s life. “I can’t remember, either Friday or Saturday, and the hospitalist came in and said, ‘there is a mass.’ He just dropped the bomb, ‘There is a mass.’” Susan’s metaphorical use of the word ‘bomb’ informs us of the shattering impact of her husband’s cancer diagnosis on her life. The landscape she knew was no longer present; it was laid flat and wiped out by the destructive bomb of a malignant brain tumor.

Waiting in Silence

The caregiver narratives included many short stories of waiting in a state of limbo, in a void of knowing. The FCGs were waiting for new information, waiting for a diagnosis, waiting for treatment options, waiting for their loved ones to make decisions, waiting for their person to share knowledge, and overall waiting for more to be revealed. Multiple FCGs shared stories of waiting in silence, in which their loved ones were not open or forthcoming to share personal and medical information with them. This silence and waiting are important aspects of the experience of liminality. For these caregivers, their loved ones’ silences contributed to their sense of dwelling in liminality and their struggles to maintain knowledge and certainty.

Kanika accompanied her cousin to his first oncology appointment where he was offered an urgent start of chemotherapy. Kanika shared a photo of her cousin looking out the window while at his first appointment (see Figure 3). She shared how this photo shows her cousin being in too much pain to sit down and also avoiding talking to her about how he felt. Her cousin decided not to proceed urgently, and Kanika waited for him to choose when he wanted to start treatment. This waiting was challenging and frustrating for her, as she knew from previous knowledge that waiting could contribute to cancer spread.

Figure 3.

Kanika’s photo.

Just hurry up! Hurry up! With my experience, early detection, early intervention changes those outcomes for the better. Yes, it’s scary. It’s the fear of the unknown.

While she recognized the seriousness of her cousin’s health situation, she respected his choices by waiting on him to make his own decisions about his care. Now she waits for her cousin to share his knowledge of his disease with her. While he often failed to communicate with Kanika what he knows, she found meaning and inner-knowing in the silence.

Susan spent a month waiting for her husband’s healthcare providers to ascertain a medical diagnosis explaining his waning symptoms. “It was a lot of wait and see.” “There was such an unknown component to everything, like we didn’t know what it was. Everyone was saying, ‘We think,’ but nothing definitive.” Once they were delivered the news that the biopsy confirmed a cancer diagnosis, Susan then had to wait for a plan of care.

There was still this really big uncertainty about everything. But at least we did…feel some relief. We know it is cancer at least and we can kinda look forward…we know that there will be something offered. We didn’t know what it was at the time, but we were hoping anyway that there would be something offered.

Now Susan is waiting to know how the tumor will respond to the cancer treatment. She has seen her husband decline symptomatically and does not know what this means in the big picture of his cancer trajectory and prognosis.

With each treatment he gets it’s like a cumulative effect. It seems with him that he’s just getting and feels more weak. We go for short walks and he has to stop. Like we walked a mile and we had to stop. Half a mile and he was pretty good. And then we turned around to go back and we then had to stop like two or three times so he could catch his breath and that scares him. And so we’ve had talks about like the what ifs…what if they come back?…see he has a PET scan scheduled next week. What if the PET scan comes back and it isn’t working?…But what if cancer spread to different areas, what then?

Discussion

The purpose of this paper was to explore cancer caregiver narratives for themes of liminality and contribute to advancing knowledge of the phenomenon. Whereas previous research findings point to liminal themes, this is the first known study explicitly focused on understanding how liminality manifests within cancer FCG narratives. This study contributes to new knowledge and our understanding of how cancer FCGs dwell in spaces of liminality, as living-in-between what was previously known and what will be known in the future. The identified themes support the assumption that cancer FCGs dwell in liminality as a transformational threshold space of paradox, time warps, life disruptions, and waiting in silence as a landscape of not-knowing presented by living alongside a special person during their advanced cancer illness journey. Theoretically grounded by Unitary Caring Science, the findings expand upon previous research which positioned liminality within the biomedical perspective as a rite of passage of transition to caregiving as a linear path with the goal of a return to normalcy ⁷ and introduces new knowledge. This new knowledge prompts nurses and other healthcare providers to embrace a Unitary Transformative worldview and recognize the non-linear, circular, and transformational liminal landscape that advanced cancer FCGs navigate within on a daily basis.

Despite oscillating between contradictory modes of being while dwelling in a landscape of paradox, these caregiver narratives include stories of hope and evolving consciousness while simultaneously reflecting upon the reality of their loved one’s serious illness. Consistent with previous research,^7,18 these FCG narratives included stories of tension, suffering, and adaptation as they learned to navigate the myriad of “roller coaster” events, information, perceptions, and interpretations of their loved ones’ serious illness trajectory.

The theme of time warp suggests that a life lived alongside serious illness disruptions and medical trauma can shift standard temporal markings into ambiguous, non-linear processes as the relational understanding between the past, present, and future collide and co-exist to influence multidimensional transformation. While the theme of time warp has been previously described in the literature,^7,39 we hope these caregiver narratives encourage nurses to recognize the embodied life of the cancer caregiver is lived in the present by looking back on the past while seeking meaning, purpose, and hope for the future. Narratives provided an open and liminal landscape for us to reconstruct time and events and to appreciate the order and connections within the shifting layers of meaning introduced by the illness threshold. The Unitary Caring Science worldview of time supports the findings of this study as a ‘stream or river of consciousness,’ as time and consciousness are always evolving, wherein space and time are unbounded and non-sequential.²⁸ The absolutism of time and space is rejected and replaced with patterns of interconnections within a non-linear and omnipresent order and domain. As noted in these narratives, FCGs do not experience time in a linear and ordered process. The quantum perspective of One-ness and undivided wholeness support the unbounded connections and intersections of time, space, and consciousness as honored and explored within narrative’s evolutionary space. ⁹

These FCGs shared stories of life disruption and feelings of dwelling in a space of waiting, filled with silences and uncertainty. In his seminal work on illness narratives, Kleinman ⁴⁰ a patient and a spousal caregiver, stated, “The chronically ill [and their caregivers] often are like those trapped at a frontier, wandering confused in a poorly known border area, waiting desperately to return to their native land…who sit in the waiting rooms, who even travel through the same land of limbo…” ^{(p. 183)} Multiple references ^{17,18,41,42,43} describe this liminal landscape as a space where patients and caregivers feel trapped, scared, isolated, uncertain, disembodied, and dehumanized while waiting for events to unfold that are beyond their control. Bruce et al.⁴² study described this experience of living-in-between as “groundlessness” exhibited by a lack of familiar meanings and connections, whereby people attempt to make sense of the new realities of their lives.

Family caregivers of cancer care recipients often share stories of waiting and not knowing what is happening with their loved ones and not knowing what to expect in the future.^16,18 They are cut off from understanding and knowledge of the person with cancer’s future and trajectory of illness either by the health care system that may not know how to project into the future or by their care recipient’s intentional or unintentional responses. Similar to Dahlborg-Lyckhage and Lindahl¹⁷ study findings with caregivers of terminally ill individuals, these advanced cancer FCGs experienced the threshold space of waiting as a break in their life history. Yet, despite living in a landscape filled with silences and lack of knowing, these caregivers shared stories of making meaning from the silence and unknowns. Meaning, as a Unitary Caring Science concept, can be comprehended by attending to the unfolding patterns of a life story that can be uniquely manifested within a given moment.²⁷ Silence, embedded in a relational context, is a way of telling and can be a form of power.⁴⁴ As indicated by the caregiver narratives, persons with illness may decline to share their knowledge as they lack the possibilities to share a different and more palatable story. For these caregivers, their loved ones’ silences contributed to their sense of dwelling in liminality and their struggles to maintain knowledge and certainty. Yet, these serious illness thresholds present opportunities for transformation and transcendence to occur as the human frame of reference shifts to a new dimension, finds new ways to make meaning, regenerates purpose in life, explores new ways of being and becoming, and expands consciousness.³¹

Implications for Nursing Practice and Nursing Research

While there is potential for sacred awakening and personal transformation in liminality, the Western mainstream bio-medical paradigm does not support the turn towards the interiority of silence, wonder, stillness, and presence which may foster resiliency for liminal landscapes. As stated by O'Donohue ⁴⁵ “We have unlearned the patience and attention of lingering at the thresholds where the unknown awaits us”. ^{(p. 33)} Yet is from within these threshold disruptive spaces filled with the ambiguity, paradox, and silences that transformational opportunities exist and from wherein we can begin to see the uncertainties of life in a new light.

This study advances narratively ground knowledge for nurse clinicians to develop interventions that assist FCGs to widen their window of tolerance and foster increased resilience while dwelling within liminal spaces. Opsomer et al.⁴⁶ recent meta-synthesis of qualitative research was completed to understand the evidence of resilience in cancer caregiving. They found that one of the coping strategies used for cancer FCGs is “focusing on everyday life,” ^{(p. 52)} to be present in the here and now. Focusing on the everyday life can promote peace, hope, and a break from the cancer. Nurses can apply this understanding in clinical practice through the development and facilitation of resilience supporting and acceptance based health interventions such as art making⁴⁷ and mindfulness,⁴⁸ which can promote a focus on everyday life, humanize the lived experience, and facilitate FCG emotional and spiritual wellbeing. Additionally, these healing strategies may encourage cancer FCGs to accept and embrace liminality as a personal transformative space instead of resisting life transitions as chaotic, non-normal, and destructive to previously held expectations.

The findings of this study provide insight into potential avenues for future research about liminality in advanced cancer FCG populations. We need to explore how the themes of liminality are defined and differ between caregiver populations, such as between spousal and non-spousal caring relationships, within diverse populations, and gender and age distinctions. These factors may affect the perception and influence of liminality on their caring experience. We found that the spousal caregivers talked about their experience in a relational “we” context which may have contributed to the themes identified in this study. Additionally, contextual factors such as racial and ethnic differences, spiritual beliefs and practices, place or setting variances, vocation, and educational backgrounds could be explored. Future research is indicated to identify how dwelling in liminality impacts cancer FCGs’ emotional and spiritual wellbeing/wellbecoming. While we know that cancer affects the caregiver’s quality of life in all domains of care,^6,49 there are many unanswered questions regarding the interrelationships between liminality and emotional and spiritual wellbeing.

Implications for Future Theoretical Development

Unitary Caring Science was a powerful framework for us to study the phenomenon of liminality as it is experienced among cancer FCGs. Yet, an opportunity exists for advancing knowledge about health-related liminality through the development of a situation-specific theory that works with and complements Unitary Caring Science. A situation-specific theory about liminality in health and illness transitions could coherently represent and depict the concepts and interrelationships emergent in the findings of this study and others to a set of outcomes related to the human experience and responses.²⁶

Boundaries of This Study

The focused attention to case studies inherent within narratives does not lead to formal generalizations.³⁴ Instead, it turns toward the particularities and context dependent knowledge that is unique and situated within specific times and spaces which may inform our understanding of the broader commentary of a human experience. We recognize that we chose a methodology of inquiry that lends to contextually situated knowledge yet provided us a tool to systematically study the personal experiences of the narrators and to co-create meaning from their experiences. Critical insights into the complex and holistic human condition of living in liminality were revealed through the detailed attention to the small stories contained within the caregiver narratives. We chose to use narrative inquiry, informed by post-modern, social constructivist, and feminist views, as another way of knowing that allows for many voices, subjectivities, positions, and truths.³⁴ We accepted the narrator’s stories to be their truth for the moment ⁵⁰ and the co-created narratives to be contextually situated, standing upon moving ground that can be deconstructed, accepted, and contested by others.³⁴ Additionally, we recognize that this study was limited by white centricity, both from within the research team and the sample. Whereas we aimed to gather racially and ethnically diverse narratives located in the South-Eastern region of the US, we were unsuccessful despite our intentional recruitment efforts.

Conclusion

This paper contributes to new knowledge grounded in Unitary Caring Science and its pragmatic usefulness within the discipline of nursing. While the findings for the study are congruent with the growing research on family caregiving, they are unique because this study looked specifically at the lived themes of liminality within co-created cancer caregiver narratives grounded in the Unitary Caring Science framework. The thematic threads of liminality within and across the caregiver narratives illuminate new facets of cancer FCGs' holistic and lived experience of caring in family relationships and invite opportunities to evolve nursing clinical practice and implement innovative research that can foster resilience and healing while dwelling in liminal spaces.