“It Made Me More Human”: Existential Journeys of Family Caregivers from Prognosis Notification Until after the Death of a Loved One

Abstract

Background:

An essential component of palliative care (PC) is providing psychological and existential support to the family caregivers. However, there is scant research on the existential journeys of family caregivers throughout the disease trajectory and beyond.

Objective:

This study aimed to obtain a deep understanding of the existential journeys of family caregivers from prognosis notification until after the death.

Setting/Participants:

A purposive sample of 22 caregivers of terminally ill family members who had died was recruited at a PC bereavement program in Canada and participated to qualitative phenomenological interviews.

Data Collection:

Interpretative phenomenological analysis was used to analyze the data derived from in-depth interviews.

Results:

The participants' existential journeys can be described by three dynamic dimensions: (1) from avoidance to integration of death, (2) from meaninglessness to meaningfulness, and (3) from transformation to transmission. The findings highlight the importance to family caregivers of having opportunities to share their experiences as a way to progress on the existential journey.

Conclusions:

PC should extend beyond the death of the loved one and expand to include existential aspects of the caregiving experience.

Introduction

One of the main purposes of palliative care (PC) is to improve the quality-of-life of end-of-life patients and their family members.¹ As a result, PC involves supporting family caregivers through their psychological and existential journeys during a loved one's illness trajectory and beyond.¹ Given that family members have a crucial role in PC, a growing body of literature has sought to improve our understanding of the caregiving experience.^2–4 Caring for terminally ill loved ones may be difficult, physically exhausting, and psychologically taxing.⁴ In a recent comprehensive literature review, Oechsle⁴ concluded that family caregivers shoulder psychological burdens and morbidities, and many family caregivers have unmet needs. Although the number of studies on the physical and psychosocial distress of family members during a loved one's illness trajectory are increasing, the existential aspects of these caregiver's experiences have mostly been ignored.^5,6

Being notified of a terminal prognosis commonly evokes existential concerns for patients and their family caregivers.^5–7 Under these circumstances, caregiving may be a shock that forces caregivers to confront their personal existence and may create existential anxieties regarding life and death.^5,6 Caregivers may also experience existential distress,^2,8 which is commonly defined as an incapacitating state of despair, resulting from an inner perception that life is meaningless and absurd and is manifested as a sense of loss of meaning, fear of death, and/or deep anxiety.⁹

Although some family caregivers have been found to experience existential distress, others seemed to develop a deep sense of meaning and purpose.¹⁰ Recently, Emanuel et al.¹¹ conceptualized the state of meaningfulness and wellbeing when confronted with life's finiteness as “existential maturity.” They described “existential maturity” as a developmental process that is triggered by the confrontation of one's own—or another person's—mortality. Existential maturity is further described as a steady state or dynamic integration course that involves inevitable moments of oscillation and regression.¹¹ Drawing on attachment theories, Emanuel et al.¹¹ proposed the importance of a so-called “holding presence” that is necessary for terminal patients and family caregivers to attain existential maturity. Although the concept of “existential maturity” offers a promising avenue for studying the paradoxical state of wellbeing, sometimes observed in patients or in family caregivers who are confronting death, the theoretical development of this concept is at an early stage that warrants further exploration.¹¹

In sum, empirical evidence suggests there is existential distress and unmet needs of family caregivers throughout their loved ones' illness trajectories. Studies also indicate that family caregivers may experience existential growth resulting from their caregiving experience.¹⁰ Thus, there is a need to deepen our understanding of existential experiences and its complexity.^4,10 To the best of our knowledge, no previous studies have deeply explored family caregivers' existential experiences as a dynamic process that evolves during the patient's disease trajectory until after death. This new knowledge may generate insights concerning the ways in which family caregivers achieve meaningfulness and/or existential maturity. Importantly, an improved understanding of family caregivers' existential experiences could guide further development to enhance the ways in which support is provided to this population.

The present study seeks to acquire an in-depth understanding of the existential journey of family caregivers from prognosis notification until after death. We designed a qualitative and retrospective study anchored in a constructivist-interpretative paradigm,¹² and an interpretative phenomenological analysis (IPA)¹³ was used to collect and interpret our data.

Methods

Participants

Participants were recruited on a specialized PC ward in a University Health Center in Montreal, Canada. As part of the bereavement program of this PC unit, a condolence letter is usually sent to the primary caregiver of patients who have deceased each month.

We sent invitation letters to all bereaved family caregivers who met the following criteria: (1) were no younger than 18 years; (2) had previously provided care to a close family member from prognosis notification of a terminal illness until death; and (3) their caregiving experience was between 6 months and 3 years before study recruitment. The scope of six months to three years was determined with the clinical PC team and in coherence with IPAs recommendation of internal diversification of sampling.¹³ A minimum of six months post death allows caregivers time to recover from the acute phase of grieving, and a maximum of three years goes beyond the commonly expected normal grief period.¹⁴ Therefore, this time frame offers enough diversity without compromising the sample's homogeneity.¹³ The present study received ethics board approval from the tertiary medical center where the research took place. Table 1 shows the recruitment process in detail; Table 2 provides the sociodemographic characteristics of the sample and details about data collection.

Table 1.

Recruitment

Steps taken for recruitment	N
Invitation letters mailed	402
Letters returned by post office indicating a wrong address (n remaining)	58 (344)
Individuals contacted the researcher by e-mail, phone, or mail to have more information on the study (response rate)	38 (11%)
Individuals who scheduled an interview	24
Individuals who cancelled participation or did not attend their interview	2
Participants who completed the interview	n = 22

Table 2.

Participants' Characteristics and Interview Details

Characteristics	N total = 22
Gender^a	F: n = 22
Gender^a	M: n = 0
Age (at the time of interview)	19–78
Time since death (months)	6–32
Relationship with the deceased	Spouse: n = 5
	Parent: n = 10
	Child: n = 2
	Sibling: n = 5
Religion^b	Catholic: n = 20
	Atheist: n = 1
	Jewish: n = 1
Received professional psychosocial support	Yes: n = 3
Received professional psychosocial support	No: n = 19
Interview length (minutes)	65–160
Location of the interview	Participant's home: n = 17
Location of the interview	Researcher's office: n = 5

Statistics suggest that the vast majority of family caregivers are women.¹⁴ This figure is also coherent with previous findings regarding the overrepresentation of women in palliative care qualitative research.¹⁵

All participants were nonpracticing (including those of Jewish and Catholic faiths), which is representative of the sociocultural context in Quebec, Canada, where the study took place.

Data collection

All participants (n = 22) were separately interviewed by the main researcher (n = 16) or by a trained psychology doctoral candidate (n = 6). All interviews were audiorecorded and discussed between the two interviewers to ensure coherence. The interview guide was developed by the principal researcher—who is also a clinical psychologist specializing in PC and bereavement—and was validated by the clinical PC team. During the interviews, the participants were invited to share their caregiving experiences beginning with the first sign of illness through the prognosis of terminal cancer, end stages of life, death, and after death until present time. The interview guide is shown in Table 3. Reflexive notes were taken throughout the data collection process, which lasted for two months.

Table 3.

Interview Guide

Disease trajectory	Example prompts
First sign of illness	What were your thoughts and concerns?
First sign of illness	How did you feel?
Prognosis	How did you feel about the diagnosis?
	What where your main concerns?
	What were your priorities?
	What was most important to you at that time?
Treatment stage	How did you feel during the treatment period?
	What where your main concerns?
	What were your priorities?
	What was most important to you at that time?
Transition to palliative care stage	How did you understand the transition?
	What were your thoughts and feelings regarding the eventual loss?
	What where your main concerns?
	What were your priorities?
	What was most important to you at that time?
Palliative care stage	How was it for you at that time?
	What where your main concerns?
	What were your priorities?
	What was most important to you at that time?
At death	How did you experience the moment of death?
Shortly after death	How was it for you the days following death?
	And weeks, months after?
	What where your main concerns?
	What were your priorities?
	What was most important to you at that time?
Current	How do you feel about it now?
	How is it to talk about it?
	What do you keep from that experience?

Data analysis

At the completion of the data collection phase, all interviews were transcribed. The main researcher validated all transcriptions and relistened to the recordings as part of a data immersion process. Afterward, transcriptions were uploaded into NVivo software. The principal researcher exclusively conducted data analysis, although reflexive notes, and preliminary results were presented and discussed with the doctoral candidate, with peers (i.e., qualitative researchers) and with the PC clinical team. Throughout the research process, we followed Tracy's¹⁷ eight key markers of quality in qualitative research, as shown and exemplified in Table 4.

Table 4.

Tracy's (2010) Eight Key Markers of Quality in Qualitative Research

Key markers	Means through which criteria were achieved
Worthy topic	Study's relevance was supported by the palliative care clinical team
Worthy topic	Supported by the existing literature in the field
Rich rigor	Relevance of the findings in relation to existing theoretical constructs (e.g., existential maturity)
	Significant sample size for qualitative phenomenological research
	In-depth interviews by psychologists
	Discussion with peers
Sincerity	Transparency with regard to the methods (recruitment, interview coding, etc.)
	Recognition of the researchers' subjectivity, Keeping a reflexive diary
	Recognition of study limitations
Credibility	Substantive citations from diverse participants
Credibility	Crystallization (with peers and clinical teams)
Resonance	Evocative representations
	Transferable findings
	Result validation with the clinical team
Significant contribution	· Conceptually/theoretically
Significant contribution	· Clinical contribution/transferability
Ethics	Procedural ethics (approved by a board of ethics)
	Situational ethics (interviews conducted by psychologists; referral offered if needed)
	Relational ethics (included all participants who showed interest; availability of researcher)
Meaningful coherence	Question/paradigm/design and analysis in line with IPA
Meaningful coherence	Coherence between literature, data, and interpretations

IPA, interpretative phenomenological analysis.

With IPA, the first step involves data immersion through repeated reading of interviews. While reading the text, the researcher attempts to suspend all theoretical presuppositions to focus on the transcript data.¹⁸ For the second step, we divided the text in temporal sections based on the interview guide to facilitate coding. Then, each transcript was coded using a free and open grid to promote the emergence of codes and themes that best captured the essential meanings of the participants' experiences. An example of the codification grid is provided in Table 5. A subsequent step involved searching for possible connections between themes. Given that IPA acknowledges a place for interpretation,¹⁸ the investigator may take a slightly more active role during this step¹³ and refer to existing theoretical concepts to make sense of the data. At this particular step, a cross-analysis of the 22 transcripts was conducted and particular attention was paid to the possible manifestation of existential concepts, such as mortality and meaning. The notion of “dynamic integration” previously evoked¹¹ to describe the process of existential maturity was used to conceptualize the final themes—in terms of a dynamic process—instead of static experiences.

Table 5.

Example of Codification/Analysis

	Mary	Michelle
Interview guide	Prognosis/How did you feel about the prognosis?	Current/What do you retain from this experience?
Verbatim extract	Feel?… don't know… it was like … unreal. (Pause) I thought… it's a mistake…you know… and… then…I thought… canc… cancer… It's bad…and well I thought of it … [death] but didn't want to. I didn't ask questions at all. I didn't want to know the answers.	Well… I guess…. Maybe some kind of wisdom…like…some peace with those things…or death you know…I look at my life and I tell myself that I am a lucky woman … I am loved and I have been loved my whole life. So I am ok with anything that could happen next…
Code/theme	Prognosis/Tries to avoid thinking about death	Current/Developed peace with the thought of death
Dynamic integration	Death avoidance	Death integration

Results

Our participants described their existential journeys in terms of personal evolution from diagnosis/prognosis notification until after their loved ones' deaths. Three dynamic existential dimensions emerged from our analysis: (1) from avoidance to integration of death; (2) from meaningless to a meaningfulness; and (3) from transformation to transmission. The dimensions are described below and are supported by our participants' statements.

From avoidance to integration of death

Most participants indicated that their journey began when they learned of the prognosis and first confronted ideas of death and loss. However, to remain hopeful and supportive of their loved ones throughout the treatment phase, they tended to push away their own thoughts of death and loss:

Oh yes, I did […] [think about death]. It paralyzed me. Totally. It's like my whole life changed suddenly. It was unreal […] and after […] Focusing on treatments helped me to prepare […] I guess. (Deborah)

Some participants stated that the idea of death was always in the back of their minds during treatment and palliative stages. However, as the illness progressed and their responsibilities increased in intensity, many participants seemed unable to halt their busy caring activities to deeply reflect on their experiences. Still, some participants indicated a deepening existential awareness during the treatment and palliative stages that was triggered by them confronting death:

I remembered that specific moment when he was on the tenth floor. I went back home for the night. I walked for a while… I remembered looking at normal people … walking and chatting about… I guess life things! I envied them so much at first! And then I felt an urge […] It's like I wanted to tell, you know, Wake up! Enjoy what you have! It's so precious! (Susan)

Most participants seemed to not integrate the idea of death into their existential reality until months after their loved one's death, when they had taken time and space for introspection. Several participants mentioned that caring for a loved one until death had forced them to confront their own mortality. That is, death became palpable and real, and life was thereby perceived as fragile.

I tell myself, anything can happen quickly. From one day to the next everything is fine, and from day to the next you can be told you have cancer and you can die in three or six months. It made me more aware of this kind of thing and one could say it has changed things for me. These are things I don't have as much trouble thinking about now. Life is so fragile! (Emma)

Some participants explained that wondering about their own deaths shed light on their lives. In confronting the fleeting nature of life, intense personal reflections about values, priorities, and the meaning of life arose:

You realize through all this how lucky you are to be in good health, and after getting through that, you feel like you want to enjoy the fact that you're healthy, and enjoy those times. (Joan)

From meaninglessness to meaningfulness

Confronting death triggered questions about the meaning of life, and many participants' existential journeys toward meaning began with a sense of meaninglessness:

Yeah, when we [realized] that there was nothing to do just wait until [death] […] Everything seemed completely […] I don't know. It's like…why? What's the point? What's the whole point anyway? (Linda)

And yeah, when it happened it's like, everything that seemed important or even relevant […] all gone. I didn't care about anything but him […] Everything else, you know, work, the house, things I enjoyed […] didn't make sense. Who cares about the house if you can die at any moment, you know? (Joanna)

Our participants described great suffering in the profound meaninglessness that they experienced when first learning of the prognosis, which persisted as they helplessly witnessed the intense suffering of others. Many participants seemed it deeply necessary to transform their waking nightmares into positive experiences; their greatest meaninglessness may have been the impossibility of deriving meaning from their experience.

I think one does not want, one wants to find good things from all this because otherwise it is too terrible. So when I have to talk about it, I say that I became aware of the fragility of life, I try to draw what I can from this unfortunate situation. (Meghan)

Most participants pointed out that, over time, caregiving became meaningful per se and contributed to a sense of purpose. Some participants stated that caregiving was a special role or “mission” that created a deep sense of accomplishment. For some, there were meaningful consequences of intense caregiving, including overcoming personal limitations, discovering unexpected strengths, and rediscovering oneself:

Yes, it was hard, very hard, but my role was to care for him until the end. Caring for my husband and elderly people was my mission, which has now been accomplished. (Diane)

From transformation to transmission

For participants, caregiving provided a path for transformation. That is, many women stated that they were transformed by the experience, and some developed deeper and more authentic connections to themselves. Others stated that they had become better people by being able to express new qualities, such as empathy and compassion:

It changed me; I'm no longer the person I was before my father died. I no longer have the same values, I was superficial […] now I am more empathic […] (Rose)

Well […] It made me more human in a way […] like a better version of myself […] more compassionate […] [and] sensitive. (Patricia)

However, many participants were not aware of their personal transformations until months after the death of their loved one, after which they had sought out support for their feelings of grief:

It's only later that I became aware of it […] The psychologist really helped me […] [make] sense of who I was […] and what I went through […] It's an ongoing process and it was kind of invisible until I started to share it […] you know. (Susan)

In addition, many participants mentioned a desire to share their stories and existential journeys. Indeed, their desire to participate in the present study reflected a desire to make sense of their experiences and to share the unexpected gifts of enhanced awareness and transformation:

With some professional help, I kind of […] made sense of everything that happened and […] I even found some sense of […] you know […] being ok with death and all that so It feels good to talk about it. it makes it even more real […] but also, I thought maybe my story could help others […] I hope I can help others. (Krista)

Discussion

The present study sought to uncover a deep understanding of the existential journeys of family caregivers. Our analysis suggests that this journey can be described in terms of three dynamic dimensions: from avoidance to integration of death, from meaninglessness to meaningfulness, and from transformation to transmission. The 22 women in our study seemed to be at different points in their existential journeys. However, this journey should not be interpreted as a linear process, but as a dynamic oscillation between meaning and senselessness, and between the avoidance and confrontation of death. Indeed, the existential journeys of our participants led them to a sense of personal transformation, and a few of them hoped to share their journeys and to help others.

Our results support the small body of research on this topic, as prior research indicates that in confronting death, caregivers can become more aware of life's fragility, confront their own mortality, and seek meaning.^3,5 Our findings also support many existential theories which argue that overwhelming experiences, such as the death of a loved one, awaken one's existential consciousness.^19,20 Lastly, given our participants' experiences of existential transformation and their desire to share their own experiences and to help others, our findings support Emanuel et al.'s¹¹ concept of existential maturity.

A crucial contribution to the literature is our finding that sharing intense caregiving experiences supports progress in one's existential journey, which is coherent with exiting theories on narration²¹ and meaning construction.^22,23 Although many participants reported having little time and space for introspection during their caregiving experience, they eventually felt a desire to share their stories to help make sense of their experiences, to help others, or to transform themselves.

Furthermore, our participants' existential journeys were most evident after the death had occurred and they expressed a desire for support during their existential reflections. However, they also indicated a desire for a place where they could talk and listen; where they could engage in existential matters to help transcend and transform their experiences. This finding echoes the importance of a “holding presence” in the journey toward existential maturity.¹¹

An essential component of PC is easing the existential suffering of caregivers. Our results suggest that this support may be beneficial for months after the death, regardless of the grieving process. Given this, support groups where caregivers can share their stories, make sense of their experiences, and progress on their existential journeys may be a useful way to employ PC during the bereavement process and beyond.

Although these findings deepen our understanding of caregivers' existential journeys, which could be transferred to a clinical setting, they are not generalizable. That is, our purposeful sample of women who volunteered to take part in our in-depth interview surely does not represent the experiences of most bereaved caregivers. More studies are needed to further explore the existential dimensions of other subsamples of bereaved individuals, namely, males or individuals experiencing complicated grief. Despite our study's limitations, our findings offer an interesting insight into the existential dimension of caregiving. Furthermore, to our knowledge, this study is the first to explore the existential journeys of family caregivers as a complex and dynamic phenomenon.

Footnotes

Acknowledgments

The authors would like to thank Editage () for English language editing. They would like to thank the MUCH Palliative Care team for their collaboration.

Funding Information

This research was funded by Fonds de Recherche Québécois sur la Société & Culture (FRQSC).

Author Disclosure Statement

No competing financial interests exist.

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