Informal caregiving in Hematopoietic Blood and Marrow Transplant patients
Section snippets
Transplant process
In HCT, either the patient’s own cells are harvested and stored and then reinfused (autologous HCT) or hematopoietic stem cells from a histologically compatible sibling or matched unrelated donor are collected from marrow or from the peripheral circulation and infused (allogeneic HCT). The goal of therapy is to destroy malignant cells using: 1) myeloablative doses of treatment (usually in the form of chemotherapy and/or radiation therapy) followed by HCT to rescue the patient from the profound
Purpose/aims
The purpose of this research is to describe the caregiving process of caregivers of allogeneic HCT patients. The specific aims of this study are to describe caregivers’ ongoing caregiving activities; describe caregiving role strain, worry, and rewards of caregiving; describe caregiver quality of life, depression, fatigue, and intrusive events; and explore relationships among outcomes of caregiving and caregiver quality of life.
Design/research
The design approach is a descriptive correlational study that explored the caregiving process and outcomes for caregivers of patients recovering from allogeneic HCT.
Theoretical framework
Family caregiving is viewed from an interactionist perspective (Burr et al., 1979), suggesting that characteristics of and interactions among the caregiver, care receiver, and health care providers influence the nature of the caregiving situation and subsequent responses to caregiving (Archbold et al., 1995). This study focuses only on caregivers’ experiences. In this study, we assessed the caregiver’s contextual factors, including age, gender, education, income, financial burden, mutuality,
Sample
The convenience sample included 56 patients and caregivers that met the eligibility criteria and, who had undergone a transplant within 3–12 months. Physicians identified eligible patients for the study; therefore the sample was not consecutive. Subjects were recruited from two regional transplant programs on the west coast of the United States. Site #1 was a large transplant center on the southwest coast of the United States, and the second center was a smaller transplant center on the
Questionnaires
The questionnaires used are described in Table 1 and briefly identified here.
Demographic Tool: Two demographic tools were created for the study to capture demographic patient and caregiver information. These tools were based on previous demographic tools used by the researchers in other studies. Both are filled out by the caregiver and asked about age, gender, education, marital and parenting status, living arrangements, and socioeconomic status.
Mutuality Scale measures quality of the
Results
A total of 56 patients and caregiver dyads were accrued to the study and completed the packet of questionnaires on one occasion. Forty patients were accrued from Site #1, and sixteen were accrued from Site #2. While patients represented approximately equal numbers of males and females, caregivers were predominantly female (Table 2). A large proportion of both patients and caregivers were college-educated. Combined household income was $50,000 or higher in over half of the patient and caregiver
Discussion
Our study highlights the caregiving process of caregivers of allogeneic HCT patients. We explored several concepts related to this process; namely disruptions to patients as perceived by the caregivers and reported on the SIP, mutuality, predictability, rewards and role strain. Disruptions as experienced by patients have been reported by others. These studies have identified the high levels of distress, anxiety and fatigue in this population (Foxall and Gaston-Johansson, 1996) and the need for
Limitations
One major limitation of our study is the small sample size. Recruiting caregivers of transplant patients is challenging and needs to be addressed in future studies with larger sample sizes. There were some important differences in caregiver responses between the two institutions, with one site having caregivers who reported more patient disruption, fewer rewards, and more strain. These differences were not evident in demographic characteristics (except for total household income). Since Site 1
Implications for practice, research, and education
Preparation for caregivers falls predominantly in the role of the nursing staff at most cancer centers. This holds true for caregivers of HCT patients. Results of this study confirm and expand on previous studies, and underscore the need for clear, consistent, and tailored education for caregivers. This dedicated group of individuals is essential to the care and recovery of the HCT patient, and their care continues for allogeneic patients, up to one year post transplant. Supporting them,
Conflict of interest form
There is nothing to disclose for the authors.
Funding source
Oregon Health & Science University Faculty Intramural Research Award (D. Eldredge) & 5K24CA091442 from NCI (L. Nail), R01 CA107446 Standardized Nursing Intervention Protocol for HCT Patients.
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Cited by (36)
Family Caregiver Experiences in the Inpatient and Outpatient Reduced-Intensity Conditioning Allogeneic Hematopoietic Cell Transplantation Settings: A Qualitative Study
2024, Transplantation and Cellular TherapyPrevalence of and Factors Associated with Marital Distress among Hematopoietic Cell Transplantation Survivors: Results from a Large Cross-Sectional Study
2022, Transplantation and Cellular TherapyCitation Excerpt :Whereas the medical and psychological sequelae of this rigorous cancer treatment are well established [6–11], less is known regarding its impacts on intimate relationships. The HCT process takes a major toll on families [12–14]. Caregiving demands, often shouldered by a spouse in married patients, are tremendous and do not end once patients are discharged from the transplant center [12,15,16].
Support in the context of allogeneic hematopoietic stem cell transplantation - The perspectives of family caregivers
2020, European Journal of Oncology NursingCitation Excerpt :Physical symptoms including fatigue, sleep disturbance, pain, loss of physical strength, lack of appetite and weight loss are common (Bevans and Sternberg, 2012). It has been reported that many family caregivers experience uncertainty because the health of the recipient is unpredictable and conditions often change rapidly during the HSCT-trajectory, leading to fear in daily life (Sabo et al., 2013; Wilson et al., 2009), and poorer life satisfaction (Cooke et al., 2011). Bergkvist et al. (2018) also revealed uncertainty due to the unknown prognosis, where family caregivers used different strategies such as adjusting, maintaining hope and living in the present.
Supporting Family Caregivers of Adult and Pediatric Persons with Leukemia
2019, Seminars in Oncology NursingCitation Excerpt :Based on these assessments, oncology clinicians can guide caregivers to already existing, high-quality information and resources (see Table 3 for several resources).78 At minimum, caregivers can be provided education about what to expect over the treatment course, including induction and post-remission therapies, and during care transitions.6,79 Given the intensity of HSCT treatment, transplant caregivers also need special, upfront preparation for this unique course of treatment.
The impact of allogeneic-hematopoietic stem cell transplantation on patients' and close relatives' quality of life and relationships
2016, European Journal of Oncology NursingCitation Excerpt :As affirm Armoogum et al. (2013), “clinical teams need to be proactive with carers who do not always voice their concerns”. Other authors (Cooke et al., 2011; Jacoby et al., 1999; Jim et al., 2014; Kisch et al., 2012) have underlined the necessity of giving to patients and their informal caregivers realistic information about the lengthy and difficult rehabilitation period, which could thus reduce the frustration about the post-HSCT period. Such information should encompass the ‘timing’ of functional recovery (notably emphasising the gap between physical and psychological conditions) and also include the caregiver's potential burden and distress.
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