Sabo, Brenda PhD, MA, RN; McLeod, Deborah PhD, MScN, RN; Couban, Stephen MD, FRCPSC
Hematopoietic stem cell transplantation (HSCT) is a major treatment option for patients with hematological malignancies or aplastic anemia. Hematopoietic stem cell transplantation frequently requires repeated admissions and/or extended hospitalizations to manage posttreatment complications or relapse of the initial disease.1 Because of the complex and intensive nature of the HSCT procedure, most patients require a family caregiver, usually the spouse, to assist with their daily needs both in the acute care and home settings.2,3 Caregiving often becomes a full-time job, and many caregivers substantially alter their own daily routine to accommodate this new role.4–6 This creates a significant burden for the spouse, frequently leading to elevated stress loads above the distress associated with the uncertain future of their partner. If distress becomes unmanageable, the spouse may no longer be able to maintain their role as caregiver. Furthermore, other spousal roles such as those of intimate partner, family breadwinner, and parent may become compromised.
Increased distress may have deleterious physical and psychosocial effects on the caregiver as well as the health of the patient and entire family unit. Rather than respond to the situation on an individual level, families and cancer patients react to cancer and its treatment as one emotional system.7,8 As a result, distress in one member of the family may adversely affect all members of the family. If the distressed family member is the caregiver, the effectiveness of the medical plan of care (eg, basic medical procedures in the home such as flushing lines, giving medications, supportive care) could be negatively impacted when the HSCT caregiver is unable to provide the physical, psychological, and emotional support expected by healthcare professionals as a result of their distress.9
Psychosocial Distress Among HSCT Spousal Caregivers
Research has shown that the level of caregiver distress throughout the HSCT acute treatment phase is equal to that of psychiatric inpatients and significantly greater than among control subjects.4 It has also been shown that caregivers exhibit equal or greater levels of distress (depression, anxiety) compared with cancer patients.10 Labeling the psychological sequelae associated with a diagnosis of cancer or its treatment “distress” rather than depression or anxiety was perceived to be less stigmatizing by patients and families. Defined as “…a multifactorial unpleasant emotional experience of psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope with cancer,”11(DIS-2) distress arises out of an individual’s efforts to adjust to, or cope with, the impact of cancer.
Although a significant body of literature informing our current knowledge and understanding of caregiving has been based on studies involving the elderly, including people with Alzheimer’s or Parkinson’s disease,12 the work of cancer and palliative care researchers over the past decade has begun to enhance our understanding of the impact of caring work on the psychosocial and physical health of family caregivers.13–18 The demographics of caregivers in the Alzheimer’s and Parkinson’s disease populations differ sharply from that of the HSCT population. Hematopoietic stem cell transplantation patients and their spousal caregivers typically range from 20 to 60 years of age. Patients have few cognitive deficits but greater outcome variability across the disease trajectory than the elderly population.2 Furthermore, HSCT caregivers must deal with the developmental roles associated with their age group (ie, parenting of young or adolescent children, employment, and caring for aging parents). As a result, spousal caregivers of the HSCT patient population may experience high levels of depression,19,20 anxiety, and posttraumatic stress disorder.6,21 Research has also shown that HSCT caregivers are generally less likely than patients to report symptoms of or be offered help for psychosocial distress.6,21
Hematopoietic stem cell transplantation patients are more likely than their caregivers to report positive emotional changes, such as renewed vigor and appreciation for life, a phenomenon referred to as posttraumatic growth.22,23 In contrast, caregivers are more likely than patients to experience equivalent or greater emotional distress and greater social burden relative to patients.21,24,25 This lack of positive growth among caregivers, coupled with a decreased likelihood of reporting negative symptoms, places this group at risk for significant psychosocial distress; it is also more likely that their symptoms will go unnoticed.
Similar to other cancer populations, the spouse is often the main source of emotional and practical support for patients undergoing HSCT.5,26 Particularly in the context of HSCT, the role of the spouse extends beyond emotional support to include providing increasingly more complex symptom management that was formerly provided by healthcare professionals,27 acting as a liaison between the patient and the social world, as well as advocating on behalf of the patient.28 Evidence suggests that spouses experience a greater care burden than do other family caregivers.10 Caregiver burden has been defined as a “multidimensional, biopsychosocial reaction resulting from an imbalance of care demands relative to caregivers’ personal time, social roles, physical and emotional states, financial resources, and formal care resources, given the other multiple roles they fulfill.”29(p1107) Caregiver burden results from the stress of providing care29–32 and may manifest as feelings of loneliness, isolation, fearfulness, and high arousal.29 Caregiver burden in the general oncology population has been identified as the best predictor of depression among caregivers; those who describe feeling burdened are at a 6-fold risk for experiencing depressive symptoms compared with caregivers who did not feel burdened.33
Researchers have also begun to explore the potential for posttraumatic stress among HSCT recipients, given that the transplant experience is a traumatizing event with the potential for long-term psychosocial effects. If the transplant is experienced as traumatizing by the patient, it could be predicted that the spouse of an HSCT recipient might experience secondary traumatic stress as a result of providing care to their partner or witnessing treatment interventions. Secondary traumatic stress, also referred to as compassion fatigue, has been described as “the natural consequent behaviors and emotions resulting from knowing about a traumatizing event experienced by a significant other—the stress resulting from helping or wanting to help a traumatized or suffering person.”34(p7)
Although the need for family-based distress screening and supportive care for caregivers across the illness trajectory has been recognized, it seldom occurs.35 This is attributable to significant gaps in research that would allow better understanding of the (1) caregiving experience of spouses of patients undergoing HSCT and their associated caregiver needs, (2) psychosocial effects of caregiving among spouses of patients undergoing HSCT, (3) risk factors for psychosocial distress in the caregiver, (4) factors that support psychosocial health, and (5) the effect of caregiving across the illness trajectory. In light of the limited knowledge and understanding regarding the trajectory of distress and burden among spousal caregivers, we conducted an exploratory study of the impact of caring on the psychosocial health of spousal caregivers of HSCT patients over the course of 1 year from before transplantation to 1 year after transplantation.
We sought answers to the following 3 research questions:
1. What was the effect of caregiving on the psychosocial health and well-being of spouses whose partners underwent HSCT for hematological malignancies?
2. What was the level of caregiver burden, depression, and secondary traumatic stress experienced by HSCT spousal caregivers?
3. When were spousal caregivers most vulnerable to caregiver burden, depression, and secondary traumatic stress?
For the purpose of this study, psychosocial health was conceptualized as the ability of the individual to adapt to stressful situations while meeting cognitive, emotional, social/relational, and spiritual expectations of self and others. In contrast, psychosocial distress was conceptualized as experiencing depression, anxiety, and traumatic stress (posttraumatic and secondary traumatic stress).
Ethics approval was received from the research ethics board of a tertiary healthcare facility performing stem cell transplantation prior to recruitment of study participants. Participants were recruited through the use of posters placed in the hematology waiting rooms as well as through the assistance of hematologists who identified transplant recipients and discussed the study with both patient and spouse. A total of 12 participants were recruited for the study. All participants were consented by one of the authors (B.S.) following a face-to-face discussion of the study and its purpose. Inclusion criteria consisted of spouse/partner of HSCT recipient; primary caregiver for the transplant recipient; 18 years or older; and understand, read, and speak English. One participant (male) declined to participate after completing the first interview, citing lack of time and interest. All participants were white and ranged in age from mid-30s to early 60s. A total of 4 men and 7 women completed all interviews and study measures. The most frequent diagnosis requiring HSCT was non-Hodgkin lymphoma (4/11) followed by multiple myeloma (3/11). Other transplant recipients included myelodysplastic disease (1/11), acute myelogenous leukemia (2/11), and aplastic anemia (1/11). The most frequent time interval from diagnosis to transplant was 1 year or less (6/11). We did not distinguish between allogeneic and autologous transplant for the purpose of this study.
We used a mixed-method exploratory design, which followed HSCT caregivers from immediately prior to transplant to 1 year after transplantation. Our approach combined both one-on-one interviews and questionnaires to provide a more complete picture of the implications of caregiving on the psychosocial health of the spouse. Interviews were conducted first followed by administration of the selected questionnaires. Using different methodological approaches in a consecutive fashion afforded an opportunity to supplement the information from the narratives with questionnaires. The latter provided a validated approach to exploring key factors related to our research questions concerning the psychosocial implications of spousal caregiving.
Interviews were conducted and questionnaires administered at 4 points in time: before HSCT, 6 weeks after HSCT, 6 months after HSCT, and 1 year after HSCT. The rationale for these data collection time points follows. Research suggests the time preceding transplantation to 30 days after transplantation can be distressing for the HSCT caregiver, which appears to be related to a number of stressors including the initial diagnosis of cancer, uncertainty about the outcome of the HSCT, decreased personal control, general life disruptions, and increased demand on caregiver (financial and resource).4,36 Because few studies have followed caregivers beyond the acute phase (up to 100 days after transplantation), we chose to include 2 additional time points: 6 months and 1 year after transplantation. Clinical experience suggested that a milestone for HSCT patients and caregivers occurs at 6 months after transplantation, and 1 year was identified as a transition phase to survivorship. All participants were interviewed at the same 4 points in time. Interviews took place at the regional cancer center by one of the authors (B.S.). Participants were provided with the questionnaires following each of the interviews. Questionnaires were completed and returned by mail. Three questionnaires were used: Center for Epidemiological Studies Depression Scale (CESD),37 Caregiver Quality of Life Index–Cancer (CQOLC),38 and Professional Quality of Life Scale (PRO-QoL-R-IV).39
Open-ended questions consistent with an interpretative phenomenological approach grounded in the philosophy of Heidegger40 and van Manen41 were used during the interviews to illuminate the meaning of the caregiving experience. Examples of guiding questions used included but were not limited to:
1. Tell me what it is like to provide care for (name of partner/spouse).
2. Are there aspects of providing care for (name) that you feel good about?
3. Describe for me what you believe are the biggest challenge(s) to providing care for (name).
4. Do you find you are able to look after yourself also? What kinds of things do you do to manage your feelings and concerns about the illness and (name)?
For second and subsequent interviews, participants were also asked: What has changed for you since we last talked? Tell me about these changes.
Interpretative phenomenology provides an approach for explicating human experience. The notion of understanding, of what came before (preunderstanding), what is in, and what is behind statements, is at the core of interpretative phenomenology.40 To understand what it meant to be a caregiver in this context required an exploration of the life world of the spouses’ experiences of caregiving, temporally (across time), relationally, spatially (where the individual perceives self rather than geographic space), and corporally (the embodied meaning of experience). The interviews ranged from 45 minutes to 2 hours in length. All interviews were digitally recorded and transcribed verbatim. NVivo (QSR International, Victoria, Australia), a qualitative data management package, was used to facilitate analysis of data.
Center for Epidemiological Studies Depression Scale
The CESD questionnaire is a 20-item, 4-point Likert self-report scale ranging from 0 to 60 used to rate the presence of symptoms associated with depression.37 Scores of 16 or greater are suggestive of clinical depression. The reliability of this scale has been validated in a number of studies of mixed cancer patients and healthy controls and shows good internal consistency with values ranging from α = .85 to α = .90.42–44 The CESD was used to identify the presence of psychological distress among caregivers.
Caregiver Quality of Life Index—Cancer
The CQOLC is a 35-item, 5-point Likert self-report scale that measures the effect of cancer on a family caregiver’s physical, emotional, social, and family functioning.38,45 The maximum value attainable is 140, with higher scores suggesting a better quality of life. There are no subscales with this questionnaire. Reliability testing has shown good internal consistency with values ranging from α = .87 to α = .91 and test-retest values of R = 0.95.38,45 This instrument was used to measure caregiver burden.
Professional Quality of Life Scale
The PRO-QoL-R-IV is a revised version of the former Compassion Fatigue self-test46 and consists of 3 discrete subscales: compassion satisfaction, burnout, and secondary traumatic stress (compassion fatigue) associated with helping work.39 The use of this questionnaire does not generate a composite indicator score because of the complex relationship between the subscales. A score of less than 33 on the compassion satisfaction subscale suggests dissatisfaction with the caring role. A score of greater than 22 on the burnout subscale suggests the potential for burnout as a result of the caregiver role, whereas a score of greater than 17 on the secondary traumatic stress subscale suggests risk for secondary traumatic stress in the caregiver. Reliability testing has shown internal consistency values ranging from α = .87 for compassion satisfaction, to α = .72 for burnout and α = .80 for secondary traumatic stress.39 This instrument was used to identify the presence and/or risk for secondary traumatic stress in the caregiver.
Analysis of data from the questionnaires and interviews was undertaken separately. Thematic analysis was used to illuminate the themes regarding the meaning of caring for a spouse undergoing HSCT. Within interpretative phenomenology, themes “may be understood as structures of experience (author’s emphasis).”41(p79) These structures reflect a simplified aspect of the phenomenon of interest, which, when taken collectively, allowed a deeper understanding of the lived experience of the caregivers at each point in time. First, descriptive analysis was undertaken by both B.S. and D.M. Identified themes for each of the 4 time periods were identified independently and then discussed until consensus was reached, returning to the data as necessary. The second phase of analysis, interpretation, began next, which moved us beyond description to uncover the meaning of spousal caregiving over the course of 1 year. Rigor for the qualitative component of the study was achieved through the use of memos and annotations, which served as an audit trail by providing the rationale for choices made, interpretations, and areas for further exploration and questioning as analysis unfolded. Finally, descriptive statistics, which included means, frequencies, and correlations using SPSS version 15, were generated from the data collected from the 3 questionnaires.
Mixed methods capitalize on the strengths of both qualitative and quantitative approaches while simultaneously minimizing weaknesses that may present in a single methodological approach. Such a methodological approach is “inclusive, pluralistic, and complementary.”47(p17) While we incorporated both one-on-one interviews and questionnaires, the dominant methodology was qualitative and exploratory. Once analysis had been completed for both the narratives and questionnaires, the authors then compared the findings from each data set (interviews and questionnaires) for each time period and each research question. When findings are corroborated across different approaches, greater confidence in the conclusions may be achieved. Although there is a tendency to rely on corroboration across approaches, the goal should not be considered solely for corroboration but also for enhancing the understanding of the phenomenon being studied.47
Findings from this study highlighted the risk for adverse psychosocial effects when spouses were the primary caregivers for their partners who underwent HSCT for hematological malignancies. Although interviews and questionnaires were analyzed separately, the level of distress that was reflected in the core themes was corroborated by the findings from the questionnaires. For all participants, distress was high immediately prior to the transplant, 6 weeks after transplantation, and at the 1-year anniversary. The only point in time where the results diverged was at 6 months after transplantation. Here, the narratives highlighted psychological distress, but the questionnaires painted a calmer period for the participants. A summary of the findings from the interviews and questionnaires is provided in the following sections.
Findings From the Interviews
For the spouses in this study, caring for a critically ill spouse was not a role they had envisioned undertaking at this developmental point in their lives. Their interaction with the healthcare system had, until the diagnosis of their spouse, been limited to normal life events such as births or non–life-threatening injuries. The diagnosis of hematological cancer in their spouse turned their life upside down, irrevocably changing hopes, dreams, and goals. Four core themes emerged from analysis of the interview narratives; embedded within each theme is the caregivers’ experience across time: the need for reassurance and hope, uncertainty: opening Pandora’s box, waiting: a black hole with no rules, and altered relationships: the give and take. Although all themes were reflected across time, waiting and uncertainty held the strongest meaning for the spouses across all points in time. In light of the overall prognoses for hematological cancers and the invasive, life-threatening nature of the treatment itself, it was not surprising that the spouses gave voice to waiting and uncertainty.
The Need for Reassurance and Hope
Stepping into the role of caregiver following a spouse’s diagnosis of hematological cancer was both daunting and frightening. The amount of information was overwhelming and difficult to process. Compounding the problem was the introduction of a new language—biomedicine. Oftentimes, the families had little time to prepare for the transplant following the diagnosis. Although the need for reassurance and hope emerged as an important theme across all 4 points in time, it was felt to be greatest just prior to the transplant and in the immediate weeks following the transplant. For Frank,1 the initial diagnosis left the couple feeling “swamped by the amount of information—trying to understand the disease and trying to understand [the treatment].” Donna echoed Frank’s comments as she described her first impressions of the hematology clinic:
When we first went to the hematology clinic, and they took him [husband] away and said “Oh, we are going to do a bone marrow,” I thought, “Good Lord, what’s a bone marrow biopsy?” I knew of it but I started reading everything in the room. All I saw in the whole room was support groups [posters on the walls]—we are here to support you. I thought, “My goodness, where am I?” I know about leukemia but not about bone marrow or different things like that. I grabbed all the information and stuck it in my purse.
As she entered the healthcare system, Donna began to question what and where she was. The hematological cancer system was an unfamiliar complex world, one that would require adjustment and a steep learning curve. Her need for information, for answers to her questions, was critical to providing reassurance at the initial stage of the transplant experience.
Not only did the spouses identify a high need for information at the time of diagnosis and leading up to the transplant, but they also identified that certain kinds of information provided them with reassurance and hope, thereby holding particular meaning. One example of this was reflected in discussions about “blood counts”; spouses appreciated how the nurses would carefully record the patient’s progression after the transplant on boards in the patient rooms. White blood cell counts, platelets, and red blood cell counts became a common language that measured progress. Frank spoke of the importance of counts at the second interview (6 weeks post):
They marked on the board 1, 2 right up to [day] 12, and you know sure enough you know all the trends were happening and I focused on that. So you liked having that to see. It was her guideline. She (wife) kind of compared it to being in prison where the guy is scratching the days off on the wall. And you are kind of counting the days to get out.
Reassurance and hope, although critical for the caregivers as their spouses underwent treatment, took on additional meaning beyond information and counts. Paul talked of feeling supported every step of the way. For Paul, the support of healthcare professionals made their journey over the year less daunting:
For us as a married couple, coming into the hospital was the professionalism of the nurses and the doctors. There was never any doubt in your mind that the doctors weren’t there or the nurses weren’t there to help you. They talked you through every step of the way.
For Angela, reassurance came to mean hope, comfort, and compassion. Although the nurse did not minimize the intense nature of an HSCT, her words provided a measure of comfort and encouragement:
What helped was the reaction of the medical staff and just their reassurances; their willingness to answer our questions. I think what stood out was the comment from the nurse who said, “Most people get through this just fine.” That was really reassuring because, I thought, well she would know. She has seen a lot of them [HSCT]. That was a big thing.
The need for reassurance and hope was different the farther spouses moved away from the transplant. For example, Angela spoke of how important it was to see the success stories, to hear from people when the couple attended the 1-year celebration dinner following the transplant. Angela was “really encouraged to hear from people that had their transplants like 10 or 15 years ago. They were there, and they looked good, and I think that’s so I think that was a hopeful thing.”
Many of the study participants expressed how alone they felt despite being surrounded by a myriad of healthcare professionals or other family members. The need to hear words of encouragement from those who best understood the treatment and outcomes helped to ease the uncertainty, isolation, and overwhelming feeling as the spouses accompanied their partners from diagnosis through treatment and recovery.
Uncertainty: Opening Pandora’s Box
One of the best known Greek myths may be that of Pandora, the human wife of one of the Titans, Epimetheus, who turned against Zeus. In retaliation, Zeus gave Pandora an exquisite locked box along with a gold key. He instructed her never to open the box. Curiosity overcame her, and she opened the box releasing all the suffering, sorrows, and ills known to humanity. For the caregivers in this study, entering the hematological cancer system was akin to opening Pandora’s box—the need to know, to render uncertainty certain, was tempered by the realization that one may never know and may not want to know. For Betty, uncertainty was her personal Pandora’s box:
No one can reassure you. There is nobody that can reassure you because nobody knows. No one has an answer; they can’t say in 3 months you are going to be well; if we do this treatment, it’s going to work. There are all kinds of other secondary problems that you end up with. It is like opening a Pandora’s box, you simply don’t know.
Similarly, Phyllis spoke of the challenges in living with uncertainty. For her, uncertainty came to mean an inability to plan. Life became tentative and unpredictable; answers were slow to come. Family life no longer proceeded normally; rather, schedules, work, and children’s activities could be easily thrown into disarray contingent upon appointment schedules, treatment, and test outcomes.
…that tentative thing “might be next week, week after that” is not good. It is not good enough. You can’t live like that. You can’t plan.
Given the nature of the hematological cancers and HSCT specifically, it is not surprising that spouses spoke of uncertainty and its impact on their lives whether it was uncertainty at the time of the transplant or uncertainty for the future even as life was returning to normal at 1 year. Angela captured it best when she reflected on the past year and what was ahead:
We got through things just fine, and we had our moments, but I am just glad that he is well, although in the back of my mind (sigh). I think that his life may very well be shorter than we would like. The whole thing has made me more aware I think of mortality, of my own mortality and his.
Uncertainty has become connected to waiting—waiting for the inevitable, a return of cancer and of loss.
Waiting: A Black Hole With No Rules
Intuitively, the notion of waiting appears to be integrally connected with the experience of uncertainty. Waiting, within the context of cancer, encompasses aspects of care such as waiting for a diagnosis, test results, treatment, and/or disease recurrence. Each has, within it, aspects of uncertainty, yet waiting came to mean much more for the spouses in this study. The experience of waiting moved beyond a temporal experience to incorporate waiting as an embodied experience, reflected in the subthemes of waiting as an entrance into a black hole, never ending, impending loss, or a return to normalcy.
In this first narrative with Betty at 6 weeks after HSCT, she spoke of the experience of waiting as an entry into a black hole where no rules existed. She was left to chart her own path. Starting down the path was enough to render her immobile, trapped, afraid, and overwhelmed:
You have entered a black hole in which no rules apply…. 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 bit… it catches me at moments. Most of the time I can forget about it, but I get these moments where everything just kind of closes in, like somebody squeezing a rubber ball. You catch yourself thinking “my God, what if?” …You keep tunnel vision. You can’t make it too wide. If you make it too wide, you will panic.”
Alternatively, in an interview with Angela at 1 year, she spoke of waiting for a return to normal, a resumption of preillness roles where she was no longer the caregiver but the wife. Waiting was tinged with uncertainty, fraught with despair and hopelessness:
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 same… it is normal to feel resentful, I guess, to feel all these emotions… is it going to be like this for how long? We know the recovery period takes months, even a year or two. 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.
Looking ahead filled Angela with a sense of dread—would it end? It seemed unending—`the desire to move beyond waiting to the next point, recovery, signaled release, release from a role she assumed far earlier in her married life than she anticipated, release from waiting, hopelessness, and despair.
In contrast, Phyllis (1 year) was caught between awaiting the impending loss of her husband and her desire to extend waiting. Although waiting was painful and difficult, contemplating the alternative was worse. Waiting was about sharing moments, togetherness; it was about pushing back the inevitable, death and loss:
In looking to the future, I am not sure there is one. We look at things our friends are doing, where they are going, and we are not doing those things. I look at different things we wanted to do, and I don’t think we will get a chance. I think [waiting] is like a big curve in the road. I look to the future, living alone, and I hate to go there. I hate to look at that, and I push back from that. I don’t like what I see, so I just leave it alone… I will only peek at it when I can.
The experience of waiting was complicated, uncomfortable, and frightening. It irrevocably led to altered relationships and lives. It moved the spouse beyond the taken-for-granted to a space and place of human frailty, of symptoms, suffering, and loss.
Altered Relationships: The Need for Give and Take
Taking on the role of caregiver required the spouse to move outside existing roles and relationships. It required give and take, flexibility, and the ability to accept caregiving as part of a continuum of life. In the following example, David (6 weeks after HSCT) described how he reached an understanding and acceptance in his new role:
It [caregiving] is all part of the process, of a continuum. At various times, your spouse or partner will take care of you… you expect that they are going to be there for you as you have been [there for them]. It is part of the continuum. It’s the give and take in a relationship.
Taking on the role of caregiver was also an opportunity for evaluation and change. Frank (6 months after HSCT) came to the realization that illness necessitated change, not just for the patient but also for the family:
[When you take on the role of caregiver], you see what you could be doing better yourself, as a father, as a husband. You come to the realization that you have to change a bit too. It is not just the person dealing with cancer every day that has to change, it’s everybody.
In contrast, Angela (1 year) struggled with her need for a return to pre-established roles. Although she received comfort from her role as caregiver, she saw it as time delineated. The sick role was temporary, to be relinquished so that they could move on with life as partners:
When I reflect back, I think that we took on roles, and the whole process consumed our lives. We seemed to take on these roles—he was the patient, and I was the caregiver. It was a little tough to shake those roles once he started to get better…. I was happy to be the caregiver, but after his latest surgery and he started to feel better, I wished he would have done more at home to help out. I would come home and feel resentful because I had to do this or that. I felt he could have done it during the day because it wasn’t strenuous.
For the spouses in this study, caregiving was a highly stressful, emotional time. It evoked a myriad of feelings from fear and uncertainty to hopelessness, helplessness, and despair. Roles changed leading to self-reflection and further personal change. Not only did they experience waiting as a temporal phenomenon, but they also re-experienced waiting as embodied in the relationship between spouse and partner as well as the context (eg, waiting for death).
Findings From the Psychometric Instruments
The findings from this study suggest that psychosocial distress and caregiver burden were a reality for spousal caregivers of HSCT recipients in this study. The presence of clinically significant psychosocial distress such as depression was noted in approximately one-third of the 11 participants who had scores of 16 or greater on the CESD at times 1, 2, and 4. The lowest risk for depression occurred at 6 months after HSCT; only 1 participant scored above the cutoff of 16, indicating depression, whereas a second participant had a borderline score of 15. Approximately two-thirds of the spouses reported poor quality of life immediately before (time 1) and 6 weeks after HSCT (time 2), with mean scores ranging from 83.80/140 to 86.00/140 based on findings from the CQOLC questionnaire. The closer a score is to 140, the better the caregivers’ quality of life. The quality of life for caregivers in this study was low across all 4 points in time, with scores remaining below 100.
The spouses in this study were generally satisfied with their role as caregiver as demonstrated by mean scores greater than 33 (<33 suggests dissatisfaction with the role of caregiving), across times 1 through 3 on the PRO-QoL-R-IV, which measures caregiver satisfaction, burnout, and secondary traumatic stress.39 In contrast, time 4 reflected greater dissatisfaction with the role of caregiver. The mean score at 1 year after HSCT was 31.74, with 57% of spouses reporting scores less than 33 for caregiver satisfaction. Scores on the burnout subscale of the PRO-QoL-R-IV showed the greatest risk for burnout among the spousal caregivers occurred at times 1 and 2. Seventy-five percent of spouses had scores greater than 22 (scores above this suggest increased risk for secondary traumatic stress) at time 1, whereas 60% had scores greater than 22 at time 2. The risk for burnout decreased over time with the lowest risk at time 4.
The risk for secondary traumatic stress was greatest at times 1 and 2 as reflected in mean scores of 18.38 and 18.40, respectively. The risk was lowest at time 3. The risk for secondary traumatic stress increased slightly at time 4, with approximately 57% of spouses reporting scores greater than 17. A limitation of the PRO-QoL-R-IV is its inability to qualify the degree of burnout and/or secondary traumatic stress. Overall, it appears that spousal caregivers experience the greatest risk for psychological distress, burden, and secondary traumatic stress in the acute phase (pretransplantation to 6 weeks after HSCT) of the HSCT process. Spouses also showed a drop in quality of life, satisfaction with their caregiving role, and increased risk for secondary traumatic stress at 1 year after transplantation (Table 1). The adverse psychosocial affects of caregiving noted in these self-report questionnaires appear to corroborate the themes from the narratives. For the spouses, waiting and uncertainty were the most intense immediately prior to and 6 weeks after transplantation. Furthermore, it was at these points that the need for reassurance and hope was greatest. Similarly, waiting, uncertainty, and a desire to return to normal roles appear to be reflected in the decreased level of caregiver satisfaction and increased risk for psychosocial distress (both depression and secondary traumatic stress) found at 1 year.
Correlations were run using the mean values from the 3 questionnaires to determine what, if any, relationships were present between caregiver quality of life, psychosocial distress (depression), compassion satisfaction, burnout, and secondary traumatic stress (Table 2). Satisfaction gained from the caregiving role did not appear to be related to the spouses’ overall quality of life, psychosocial distress, burnout, and secondary traumatic stress. In contrast, caregiver quality of life appeared to be low when psychosocial distress, burnout, and secondary traumatic stress were present. Caregiver quality of life appeared to be associated with risk for psychological distress across all 4 points in time. Caregiver quality of life was negatively associated with psychological distress, burnout, and risk for secondary traumatic stress. It would not seem unreasonable for a spouse’s quality of life to decrease as the potential risk for or presence of these 3 factors increased. The strongest association emerged at 1 year after HSCT (R= −0.937 and P < .001). The association between caregiver quality of life and risk for burnout was present across all 4 points in time and showed the strongest relationship at 1 year (R= −0.975 and P < .001). Similarly, the relationship between quality of life and secondary traumatic stress appeared greatest at 1 year (R = −0.819 and P < .05). The findings suggest that spouses may be vulnerable to experiencing adverse psychosocial effects such as depression or secondary traumatic stress at 1 year after HSCT, particularly if their quality of life remains low. These findings provide some guidance for future hypothesis testing regarding relationships among caregiver burden, depression, and secondary traumatic stress.
Findings from this exploratory study contribute to a beginning understanding of the effect of caregiving on the psychosocial health of spousal caregivers of HSCT patients. The results highlight the stressful nature of providing care across the disease trajectory from before transplantation to 1 year after transplantation. Participants in this study spoke of the implications of caregiving, which included the need for reassurance and hope, the uncertainty and stress associated with waiting, and how roles can affect the relationship particularly when the patients do not resume their normal family roles as expected. The stress arising from uncertainty, waiting, and role strain was corroborated by the findings from the questionnaires. Distress (depression, secondary trauma) waxed and waned at critical points such as the acute phase (before transplantation to 100 days after transplantation) and the 1-year anniversary, with the 6-month point being a time of lower risk for psychosocial distress. However, caregiver burden appeared to be a constant source of stress adversely affecting the quality of life for all participants across the 4 points in time.
The findings from our study are consistent with a study conducted by Langer et al,36 who found that caregivers experienced higher levels of depression before transplantation and higher levels of anxiety at 6 months and 1 year after transplantation.10 In a follow-up study comparing gender and role among the HSCT population, Langer and colleagues36 found the prevalence of psychosocial distress as measured by the short form of the Profile of Mood States to range from 21.7% for male caregivers to 36.8% for female caregivers. Although psychometric instruments used to measure psychological distress differed from those of Langer and colleagues, our findings were similar; the female caregivers in our study appeared to be at greater risk for psychosocial distress than male caregivers. Their narratives echoed a heightened sense of burden, distress, and role dissatisfaction as reflected in the themes of waiting, uncertainty, and altered relationships. Furthermore, their scores on the CQOLC suggest that role dissatisfaction with caregiving may have adversely affected their quality of life at 1 year after transplantation. This may be the result of multiple roles women take on as well as sociocultural norms and expectations around caregiving.48 Additionally, female caregivers of allogeneic transplant recipients, who were working full time before the transplant and who had experienced psychological distress before transplantation, were at increased risk for distress at 1 year after transplantation.10
During the HSCT procedure, the spouse is often the main source of emotional support for the patient.5,26 Evidence suggests that spouses experience a greater care burden than other family caregivers for the patient.10 Furthermore, the spouses’ focus appears to be concentrated on the patient rather than on their own personal needs, which is not unrealistic.1,9 If, however, the initial normative response as caregiver is allowed to continue, greater burden, role dissatisfaction, and distress may emerge.3,48 The spouses in this study showed an overall improvement in psychosocial well-being by 6 months but began to show evidence of clinically significant psychosocial distress, caregiver burden, and risk for secondary traumatic stress again at 1 year after transplantation. The one point of conflict between the narratives and self-report questionnaires appeared at the 6-month mark. It may be that the questionnaires were less sensitive at picking up the nuances within caregiving that the interviews were able to tease out. Although studies suggest that psychosocial distress and role adjustment issues may persist beyond 1 year for spousal caregivers of cancer patients,49,50 other studies have not shown lasting distress.51,52 The mixed findings may be due to a paucity of quality-of-life research focused on the experience of caregiving that extends beyond the acute care phase.
For the spouses who took part in this exploratory study, waiting and uncertainty appeared to feature prominently across all 4 points in time. Taking on the role of caregiver with limited preparation can be a source of uncertainty and ambiguity for the spouse, given the paradoxical nature of HSCT—the patient may recover or die of transplant-related consequences.2 When uncertainty continues across the disease trajectory, it may result in distress and burden.3 In a recent study exploring the experience of primary caregivers of HSCT recipients, study participants described the experience of living with uncertainty as akin to “riding a rollercoaster in the dark.”3(pE18) Their lives were turned upside down as they were removed from the familiar. This finding is not dissimilar to the experiences of spouses in our study who described uncertainty as a Pandora’s box. When uncertainty is coupled with the phenomenon of waiting and the need for reassurance and hope, distress may be further heightened particularly at critical points in time such as immediately prior to and 6 weeks after HSCT. This appeared to have been confirmed in the scores for risk of depression and secondary trauma, which were the highest of all 4 points in time.
Waiting also emerged as a phenomenon within the context of caring work. Conceptualized as both “clock time” and “embodied time,” waiting has come to symbolize both a shared and individual experience. In the former, social norms are constructed to regulate behavior and feelings.53,54 This conceptualization of time may be seen within healthcare and informs both organization and practice of care delivery. Patients and families are left to wait for tests, treatments, and/or disease recurrence. In contrast, embodied time is “not only individual but also relational and context-dependent”53(p57) and reflected in the caring, compassionate nature of caregiving. For the caregivers in this study, waiting was perceived as existing outside linear notions of time to encompass existential aspects (eg, looking to life after HSCT, life without a spouse—the finiteness of life), relocation of space and place (return to normal or new normal), and relational aspects (shared time together).
Although the intent of this study was to enhance an understanding of the experience of spousal caregiving within the HSCT population through an exploratory study, the small sample size limits the ability to extend the findings beyond this study group. We acknowledge that larger studies following caregivers over an extended period (eg, 2 years) are necessary to more fully understand the nature of caregiving work as well as the potential for psychosocial distress, caregiver burden, role dissatisfaction, and risk for secondary traumatic stress not only within the first year following transplant but also beyond. The use of a mixed-method approach in future studies may prove beneficial in capturing the experience of caregiving by highlighting areas of consistency and divergence. For example, 6 months after transplantation appeared to be an area of divergence with spouses articulating psychological distress and caregiver burden, yet the psychometric instruments suggest this as a time of relative calm for caregivers. Further research is needed to fully understand what is occurring at 6 months after transplantation, whether it is a time of continued distress or in fact a reprieve from stress and caregiver burden.
A second limitation of this study was the lack of participant diversity. Spouses were white and primarily of middle-class backgrounds. The inability to accrue spouses from culturally diverse backgrounds may have adversely influenced the knowledge and understanding of caregiving within the HSCT population. The need to include culturally diverse groups would be helpful in understanding the caregiving experience as well as highlighting what specific resources may be required to support psychosocial health and well-being. A third limitation was the lack of differentiation between allogeneic and autologous transplants largely due to the small sample size. Given the higher risk for complications among the allogeneic population, this factor should be considered in future studies exploring psychosocial health and the caregiving experience.
In light of the findings, nurses need to be cognizant of the potential adverse effects caring for a spouse undergoing HSCT may have on the psychosocial and physical well-being of the caregiver. This is particularly important if one considers how heavily the healthcare system has come to rely on spouses and family members to provide physical, emotional, and psychological support both in the acute care and outpatient settings. The integration of a caregiver assessment concurrently with that of patient may be helpful in identifying those caregivers at risk for psychological distress, caregiver burden, or secondary traumatic stress early in the HSCT process in order to implement interventions to support psychosocial health and well-being. Regular assessments should take place at pretransplantation admission, discharge from hospital after transplantation, at 1 year, and routine follow-up. The integration of a self-report screening tool specific to this population may be of benefit in enhancing the assessment of patients and caregivers by nurses. Although it should be considered standard of care to inquire about the health and well-being of family members when caring for patients, this is not always routinely done (unpublished survey results, International Family Nursing Association, 2011). For example, one of the spouses in this study informed B.S. at the 1-year mark that not once had either she or her son been asked how he was coping despite the fact that her husband had spent time in the intensive care unit because of posttransplantation complications. Her comments are not inconsistent with the findings from a recent review of support for family caregivers, which highlighted suboptimal supports (eg, psychosocial interventions) and inconsistent assessments related to coping.55 Furthermore, spouses in this study frequently highlighted the role of nurses in providing information. Nurses often eased uncertainty by providing good, timely information, which allowed the spouse to bear the burden of the illness more readily. In contrast, too much information, particularly early in the illness, can be overwhelming and experienced as less helpful. Nurses need to shape patient education efforts to the couple, ensuring that the information provided is the right information, in the right volume, and at the right time. Knowing the family as a unique unit will help a nurse to understand the meaning of the information provided to a particular family, ensuring that teaching efforts are more therapeutic and protective against distress.
In summary, the incidence of elevated scores for psychosocial distress, caregiver burden, and secondary traumatic stress suggests that spouses may be at risk for adverse effects as a result of their role in providing care for a partner undergoing HSCT. Furthermore, the findings underscore an urgent need to explore the role of gender, type of transplant (allogeneic vs autologous), and the dyadic relationship (couple’s relationship) on psychosocial distress across the transplant continuum.
The authors thank the International Society of Nurses in Cancer Care for providing funding to support this study. They also thank Ms Lori Borgal for assisting with the background research and Dr Jean Hughes for helpful comments.
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