The extant literature documents burden among caregivers of patients undergoing a hematopoietic stem cell transplantation (HSCT), but little is known about the burden of caregivers of patients receiving outpatient and homebound HSCTs. This scoping study sought to evaluate what is known about the burden of the increasing number of adult caregivers of patients receiving outpatient HSCTs and to create practice guidelines for how to best support this vulnerable group. Online databases were searched for studies that evaluated caregiver burden in adult caregivers of HSCT patients since 2010 (the publication date of the most recent systematic review on HSCT caregiver burden). Of the 1271 articles retrieved, 12 met the inclusion criteria, though none specifically examined outpatient or homebound caregivers. Overall, studies corroborated existing literature on the experience of significant burden among HSCT caregivers across the HSCT trajectory, and highlighted the emotional costs of outpatient transplants on caregivers and the need to identify caregivers at high risk for burden early in the transplant process. Future studies of outpatient caregivers should include a comprehensive assessment of burden and seek to identify points along the transplant trajectory at which caregivers are at particular risk for negative outcomes and when intervention is most appropriate.
Hematopoietic stem cell transplantation (HSCT) is a treatment option available for patients with high-risk hematologic malignancies and non-malignant diseases sensitive to immune modulation.1 HSCT recipients receive allogeneic (unrelated, related) or autologous (self) stem cells (peripheral blood, bone marrow, cord blood) depending on donor availability and human leukocyte antigen compatibility. These factors, along with the intensity of the preparative regimen (myeloablative, reduced intensity, non-myeloablative), demographic and disease characteristics, create a complex treatment requiring the assistance of many trained professionals.
Traditionally, HSCT, especially allogeneic, is performed in an inpatient setting where patients are monitored by health-care professionals for life-threatening complications such as cytopenias, infections and acute GvHD. Comprehensive assessment and rapid management of treatment toxicities are critical to ensuring success of HSCT. After a myeloablative regimen, where the treatment-related toxicities are often more severe, the median length of the initial hospitalization ranges from 25 to 30 days.2, 3
The outpatient or ambulatory care setting is increasingly used for less intense HSCT, such as autologous and reduced-intensity and non-myeloablative allogeneic HSCT. Outpatient HSCT involves providing the patient with the preparative regimen and cell infusion in an ambulatory environment.4 Evidence suggests this practice is safe and may be superior to isolation in the hospital. One study found that discharge to home after allogeneic HSCT was associated with decreased bacteremia, antibiotic and analgesic use, fewer erythrocyte transfusions and decreased need for parenteral nutrition.5 The results also highlighted decreased costs associated with home care, improved appetite and quality of life.
Informal caregivers (ICs, also referred to as family caregivers in the extant literature) include parents, partners, siblings, children and friends who are intimately involved in the patient’s care and play a critical role in the recovery from HSCT. In the majority of cases, an IC is a required and critical element of the HSCT process. One study found that when an IC was involved during the hospitalization phase of HSCT, the overall survival for the patient at 4 years was 42% compared with 26% among recipients without an IC.6 Moreover, the cost cutting and feasibility reportedly associated with care of HSCT patients in the outpatient or homebound setting6 appears to be mediated in large part by the efforts of ICs,7 whose involvement is needed to decrease the necessity for hospital readmissions.
As a result of the many possible complications faced by post-HSCT patients, most centers offering outpatient HSCTs require the availability of an IC for 24 hours a day, 7 days a week, for the duration of the post-HSCT period to assume many responsibilities traditionally carried out by professionals. Such an agreement represents a complete devotion of ICs’ time to the patient, which impacts multiple areas of ICs’ lives, including the ability to engage in their own health-promoting behaviors.7, 8 ICs of patients receiving outpatient HSCTs prepare their homes to avoid potential infectious complications, and are responsible for the administration of medications, monitoring of vital signs, and intake and output of fluids.9 Additionally, while ICs of patients receiving inpatient HSCTs are often tasked with the transportation of the patient to the treatment center multiple times a week after discharge, ICs of outpatient HSCT patients may be required to facilitate daily visits. Not surprisingly, such ICs often have difficulty maintaining full-time, paid employment. In an observational study, Simoneau et al.8 demonstrated the changes in employment status among 109 ICs of allogeneic blood or marrow transplant patients; full-time employment decreased from 51% before caregiving to 27% during caregiving, while the percentage of those on leave from work altogether increased from 2 to 25%.8
Caregiver burden describes the potential negative impact of the patient’s illness on ICs, and encompasses the multiple difficulties of caregiving and associated alterations in ICs’ emotional and physical health that can occur when care demands exceed resources.10 The burden experienced by cancer ICs is well documented11, 12, 13, 14, 15, 16 and a growing number of studies have demonstrated the burden of ICs of patients receiving inpatient HSCTs.7, 8, 17, 18, 19 Indeed, while several systematic reviews have evaluated the burden of ICs of patients receiving HSCT,20, 21 only a few studies included ICs of patients receiving HSCTs in the outpatient or homebound setting,22, 23 likely due to the relative infancy of such practices. Gemmill et al.20 reviewed the literature on the quality of life, roles and resources of HSCT ICs, as well as existing interventions, none of which were focused on the needs of outpatient ICs. The authors highlighted the need to develop supportive services for HSCT ICs and use existing descriptive evidence of caregiver burden for the basis of such interventions. Beattie et al.21 noted that an increase in outpatient HSCTs is likely associated with an increase in IC burden. Their conclusions highlight the dearth of investigations that include outpatient ICs and the need for a greater understanding of such ICs’ experiences and support needs. While the trend to move allogeneic HSCT patients to an outpatient setting has the potential to have a significant, negative impact on ICs’ overall psychological and physical health24 risks, these outcomes currently remain largely unaddressed.
The purpose of this scoping study25 was to expand on the existing literature on burden among ICs of patients receiving HSCT summarized by the two most recent existing systematic reviews,20, 21 and specifically, to evaluate what is known about the experiences of ICs of patients receiving HSCTs in the outpatient and homebound setting. A second goal of this study was to, based on our review, create practice guidelines on how to best support outpatient and homebound HSCT ICs.
An electronic literature search of articles published in any language since 2010 was conducted in PubMed, PsycINFO (Psychological Abstracts) via OVID, Cochrane via Wiley, EMBASE provided by Elsevier, CINAHL via EBSCO and Web of Knowledge provided by Thompson Reuters. Grey literature sources were also searched and reviewed to include Open Grey, World Catalogue for doctoral dissertations, SCOPUS and BIOSIS Previews for conference proceedings and meeting abstracts. Controlled vocabulary (MeSH, PsycINFO Subject Headings, CINAHL Headings, EMTREE) and keywords were used.
Three broad concept categories were searched, and results were combined using the appropriate Boolean operators (AND, OR). These categories included: caregivers, burden and bone marrow transplantation. Related terms were also incorporated into the search strategy to ensure all relevant papers were retrieved. The Medical Subject Headings (MeSH) used were as follows: (‘Caregivers’(Mesh) OR ‘Family’(Mesh) OR ‘Spouses(Mesh)) AND (‘Adaptation, Psychological’(Mesh) OR ‘Stress, Psychological’(Mesh) OR ‘Quality of Life’(Mesh)) AND (‘Bone Marrow Transplantation’(Mesh) ‘Hematologic Neoplasms’(Mesh)). Keyword terms included: (informal caregiver OR caregiver OR spouse OR family) AND (strain OR distress OR stress OR burden OR self neglect OR quality of life OR QOL) AND (BMT OR bone marrow transplant*). Studies were included if they enrolled adult ICs of HSCT patients, and both quantitative and qualitative studies were included. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram of this search strategy is presented in Figure 1.
The search produced 1271 articles and once duplicates were removed 1137 articles remained. The titles and abstracts were reviewed by two independent members of the team, and differences were discussed with a third member until consensus was reached. A final sample of 12 studies met the inclusion criteria and was included in the review. The majority were either cross-sectional (N=6, 50%) or longitudinal (N=5, 42%), with one employing mixed methods. Six studies enrolled patients receiving allogeneic HSCTs, and six enrolled patients undergoing both types of HSCTs. While the majority (N=8, 67%) of studies included assessments conducted post HSCT in the outpatient setting, all patients received their HSCTs and acute care in the inpatient setting. No studies examined the experience of ICs of patients undergoing outpatient or homebound allogeneic HSCT.
Key characteristics of ICs enrolled in the reviewed studies are presented in Table 1. ICs were predominantly female, White, partnered, employed full time and were the spouse/partner of the patient undergoing transplant. Table 2 presents the assessment strategy used to evaluate burden as defined by the individual studies. The majority of studies indicated in either their titles or abstracts that caregiver burden was conceptually of interest; however, only four included a comprehensive multidimensional measure of burden.8, 26, 27, 28 One additional study examined role strain,29 which is very closely linked conceptually to burden. Instead, 75% of studies examined specific correlates of burden, including anxiety and depression,27, 28, 30, 31, 32 quality of life,29, 31 unmet needs,33 fatigue27, 30, 32 and relationship quality.29, 30, 34 Additionally, one study examined the potential benefits (that is, meaning and growth) derived from caregiving. Despite the variation in the measures of burden and the correlates explored, emotional burden or psychological distress (that is, depression and anxiety) was consistent.29
The majority (N=8, 67%) of studies were descriptive in nature.8, 26, 28, 29, 31, 32, 33, 35 Overall, the findings of these studies corroborated existing literature on the experience of significant burden among HSCT ICs across the HSCT trajectory. For example, the results of Simoneau et al.’s8 investigation of 109 allogeneic HSCT ICs indicated significantly high levels of distress prior to HSCT. El-Jawahri et al.31 evaluated QOL and mood among ICs during patients’ hospitalization and found that not only did depressive symptomatology increase overall during the hospital course, but, notably, the percent of ICs meeting criteria for major depressive disorder nearly tripled from baseline to day eight. Sabo et al.28 followed ICs for 1 year, starting immediately before transplant and through mixed-methods assessments found distress waxed and waned at critical points (that is, before HSCT and 6 weeks, 6 months and 1 year post HSCT), but the burden remained consistent and impairing.
The evidence presented suggests that during the first 100 days following HSCT, the needs of the patient, especially management of their symptoms, can exacerbate ICs’ psychological distress.8, 26, 28, 31, 32, 33 These findings are in accord with those summarized in the two most recent systematic reviews. Importantly, when ICs report a higher impact of caregiving on their role, their capacity to engage in paid employment and relationships with others, their distress is even greater.26 Burden was also associated with demographic factors such as low education, younger age and financial difficulties.8, 26
A unique element of burden not captured in previous reviews but highlighted here was existential distress faced by ICs when asked to provide emotional support to patients generally, and support around fears regarding end-of-life and dying, specifically. For example, Cooke et al.29 asked ICs of 56 patients within 3 to 12 months of allogeneic SCT to rank order elements of their role they found most distressing. ICs reported that providing emotional support to patients and discussing their concerns about death were most distressing, while handling their own emotions and providing physical care was least difficult.
Four studies presented interventions, three of which specifically targeted various elements of burden among HSCT ICs,27, 30, 36 and one which was focused on patient needs but invited IC participation.34 Bevans et al.30 examined the impact of the three, 1 hour problem-solving education sessions (delivered at discharge, weeks 1 and 3) on self-efficacy and distress in ICs of allogeneic HSCT patients. Assessment occurred pre-HSCT, at HSCT and at week 6. The results indicated that responders reported decreased confidence and increased distress prior to transplant, and improvement in self-efficacy and distress was associated with decreased fatigue, improved sleep and health promoting behaviors.30 Laudenslager et al.27 conducted a randomized controlled trial of cognitive behavioral stress management intervention delivered individually over eight sessions across the 100-day post-transplant period and examined both psychosocial (for example, depression and anxiety) and physiological (that is, cortisol awakening response) factors. The intervention was associated with significantly lower distress, depression and anxiety 3 months post transplant, but cortisol awakening response did not change. Importantly, this improvement in psychosocial functioning occurred in the setting of increasing burden, as indicated by scores on the Caregiver Reaction Assessment (CRA).27 Finally, Langer et al.36 examined the impact of an expressive talking intervention for ICs of transplant survivors delivered on days 50, 53 and 56 post transplant. Participants were instructed to speak specifically about their deepest thoughts and feelings about their partner’s transplant and their experience as an IC. Despite perceiving the sessions as helpful, participants randomized to the intervention experienced more negative emotions (as assessed by the Positive and Negative Affect Schedule, PANAS).36 The authors also measured skin conductance as a physiologic indicator of emotional intensity and results suggested sustained emotional engagement.36
The shifting of HSCT from the inpatient to the outpatient and homebound settings presumably will require ICs to assume increased role demands and responsibilities starting earlier in the treatment course compared to the traditional inpatient HSCT model. Similar to the findings of the two most recent existing systematic reviews,20, 21 across studies, role strain and unmet needs emerged as key areas of burden, which are similarly well documented and likely to increase in the setting of the homebound HSCT. For example, Gemmill et al.20 concluded that the complexities of the demands of the caregiving role and social problems, such as isolation, financial demands and family tension, are significant areas of burden among ICs. Similarly, Beattie et al.21 highlighted the significant impact of the caregiving role on all domains of ICs’ lives and the distress experienced pre-HSCT, when ICs are tasked with quickly learning how to provide care to patients in preparation for their return home.
Importantly, however, data are limited on the unique experience of ICs of HSCT patients receiving their transplants in the outpatient and homebound settings. This represents a critical gap in our understanding, since ICs are likely receiving significantly less professional support and have considerably increased responsibilities in these environments. The results of this review add to the growing body of literature demonstrating distress and burden among HSCT ICs, though no studies focused specifically on the experience of ICs of patients receiving outpatient or homebound HSCTs. Notably, time since transplant and length of caregiving were not consistently or adequately described. Across studies, minimal details were given regarding the time that had elapsed between the day of transplant and assessment of the IC, and no study documented specific details of the length of time the IC had been in that role.
This scoping study revealed challenges in evaluating burden across studies, partially attributed to a lack of uniformity in how burden was operationalised and measured. Given et al.37 describe burden 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’ (as cited in Given et al.37). This definition is multidimensional, yet as seen in many of the studies reviewed here, the construct is often measured as one that is unidimensional, such as depression. It is therefore critical for researchers to understand the multidimensionality of burden and include measurement strategies that account for such dimensionality in their assessment plans. While no gold standard measures has been established, the CRA38 appears to be the most widely used measure of caregiver burden in cancer research. Advantages of the CRA include its assessment of both the positive and negative aspects of caregiving and its five multidimensional subscales that capture the broad spectrum of areas impacted by caregiving. It is psychometrically sound (Cronbach’s alpha from the initial study ranges between 0.80 to 0.90)38 and has been validated across a variety of patient populations and cultures.39, 40, 41, 42 Importantly, the results from one study reviewed here suggests that while burden as measured by the CRA may remain high, particular domains of psychosocial functioning may concurrently improve.27 This potentially counterintuitive finding deserves greater attention, and replication studies are needed before conclusions about the relationship between burden generally and specific psychosocial distress can be drawn. Specifically in transplantation, the CRA has been employed much less frequently, which limits our ability to draw conclusions about specific elements of burden in the samples evaluated. Future studies of distress among HSCT ICs across the caregiving trajectory and across settings should include the CRA so that more streamlined comparisons across samples will be possible and a clearer understanding of the multiply determined burden among such ICs can be derived.
This review highlights the significant risk of depression among HSCT ICs and the clear need for screening and intervention (for example, El-Jawahri et al.31). It is critical that transplant providers (for example, oncologists, nurse practitioners) screen for burden and distress, and based on these assessments, make targeted referrals to mental health professionals for further assessment and the provision of intervention and supportive resources. There is growing evidence to support the use of brief self-assessment measures—such as the Caregiver Self-Assessment Questionnaire43 and the Distress Thermometer44—which can be used to screen for distress and identify caregivers in need of support services. The single-item Distress Thermometer has been used extensively in psychosocial oncology and previously with HSCT IC samples, and has demonstrated construct validity in this population.45
Evaluating depression in the pre-HSCT period will help to implement services pre-HSCT to prevent against worsening depression and enhance ICs’ ability to provide care and develop and sustain resilience during the transplant process. Moreover, as recovery at home is a family experience and hence, the success of recovery is contingent in large part on functioning of ICs, evaluating family functioning pre-HSCT will highlight potential challenges within the family system to which the patient is being discharged.46 This will allow for both the determination of the appropriateness of the discharge to home, and for targeted intervention for family systems in need of acute support before and during the discharge process. Moreover, a study of the family experience following inpatient transplantation47 suggested that there is need for more external caregiving/support at home during the first year after HSCT, and such professional in-home help may help to relieve some of the strain/burden experienced and can ultimately help to strengthen the patient/caregiver relationship.
Interventions tailored to the unique needs of homebound ICs are needed. While psychoeducation fosters self-efficacy, that alone is not sufficient to prevent or ameliorate burden. Interventions that are flexibly administered, delivered early in the transplant trajectory to protect ICs against poor psychosocial outcomes, and which teach skills needed to both provide care for the patient and help ICs attend to their own needs during the HSCT process, are needed. Also unique to the findings of this review is the need for interventions that attend to existential distress, an often overlooked element of burden among HSCT caregivers.29
The initial purpose of this scoping study was to evaluate the burden that results from providing care to patients receiving HSCT in the outpatient setting. This literature was restricted and therefore we are unable to comment specifically on the experience of burden among outpatient HSCT ICs. Additionally, due to inconsistencies in the use of the term ‘burden’ and inconsistencies in the measurement strategies employed, the review may have failed to capture studies that assessed various elements subsumed under the multidimensional construct of burden. Moreover, the majority of studies included in this review enrolled participants who were predominantly White and non-Hispanic, thereby omitting other vulnerable, ethnic minority populations and limiting the generalizability of conclusions and implications.
Conclusions and future directions
It is imperative that interdisciplinary teams unite around new models of HSCT administration and include IC outcomes as a target for assessment. Routine screening for distress among ICs will facilitate the implementation of early supportive care services, including referrals to appropriate ancillary services.20, 48 Such screening should also include continued routine monitoring and follow-up throughout the HSCT trajectory in order to identify and support ICs whose distress may fluctuate along the course of patient care.
Future research should be directed toward deriving a more detailed understanding of HSCT recipients’ and ICs’ experiences and needs during the outpatient and home-bound procedure and recovery. Risk factors that deserve attention and that should be more consistently captured include race/ethnicity, education and income status, extent of caregiving (that is, years and hours per week) and changes in family dynamics/relations,26 along with clinical factors such as type of HSCT.
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We would like to thank Jaclyn M Musum, BS, for her assistance with the preparation of this manuscript.
The authors declare no conflict of interest.
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Applebaum, A., Bevans, M., Son, T. et al. A scoping review of caregiver burden during allogeneic HSCT: lessons learned and future directions. Bone Marrow Transplant 51, 1416–1422 (2016) doi:10.1038/bmt.2016.164
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