Hematopoietic Cell Transplant Caregivers Research Articles

Family Caregiver Experiences in the Inpatient and Outpatient Reduced-Intensity Conditioning Allogeneic Hematopoietic Cell Transplantation Settings: A Qualitative Study

Caregivers (ie, family and friends) are essential in providing care and support for patients undergoing hematopoietic cell transplantation (HCT) and throughout their recovery. Traditionally delivered in the hospital, HCT is being increasingly provided in the outpatient setting, potentially heightening the burden on caregivers. Extensive work has examined the inpatient HCT caregiving experience, yet little is known about how caregiver experiences may differ based on whether the HCT was delivered on an inpatient or outpatient basis, particularly during the acute recovery period post-HCT. This study explored the similarities and differences in caregiver experiences in the inpatient and outpatient settings during the early recovery from reduced-intensity conditioning (RIC) allogeneic HCT. We conducted semistructured interviews (n = 15) with caregivers of adults undergoing RIC allogeneic HCT as either an inpatient (n = 7) or an outpatient (n = 8). We recruited caregivers using purposeful criterion sampling, based on the HCT setting, until thematic saturation occurred. Interview recordings were transcribed and coded through thematic analysis using Dedoose v.9.0. The study analysis was guided by the transactional model of stress and coping and the model of adaptation of family caregivers during the acute phase of BMT. Three themes emerged to describe similar experiences for HCT caregivers regardless of setting: (1) caregivers reported feeling like they were a necessary yet invisible part of the care team; (2) caregivers described learning to adapt to changing situations and varying patient needs; and (3) caregivers recounted how the uncertainty following HCT felt like existing between life and death while also maintaining a sense of gratitude and hope for the future. Caregivers also reported distinct experiences based on the transplantation setting and 4 themes emerged: (1) disrupted routines: inpatient caregivers reported disrupted routines when caring for the HCT recipient while simultaneously trying to manage non-caregiving responsibilities at home and work, and outpatient caregivers reported having to establish new routines that included frequent clinic visits with the patient while altering or pausing home and work responsibilities; (2) timing of caregiver involvement: inpatient caregivers felt more involved in care after the patient was discharged from the HCT hospitalization, whereas outpatient caregivers were already providing the majority of care earlier in the post-transplantation period; (3) fear of missing vital information: inpatient caregivers worried about missing vital information about the patient's care and progress if not physically present in the hospital, whereas outpatient caregivers feared overlooking vital information that may warrant contacting the care team as they monitored the patient at home; and (4) perceived adequacy of resources to meet psychosocial and practical needs: inpatient caregivers reported having adequate access to resources (ie, hospital-based services), whereas outpatient caregivers felt they had more limited access and needed to be resourceful in seeking out assistance. Inpatient and outpatient HCT caregivers described both similar and distinct experiences during the acute recovery period post-HCT. Specific interventions should address caregiver psychosocial needs (ie, distress, illness uncertainty, communication, and coping) and practical needs (ie, community resource referral, preparedness for home-based caregiving, and transplantation education) of HCT caregivers based on setting.

Fit for Duty: Lessons Learned from Outpatient and Homebound Hematopoietic Cell Transplantation to Prepare Family Caregivers for Home-Based Care

In the past decade, the demand for home-based care has been amplified by the Coronavirus disease 2019 pandemic. Home-based care has significant benefits for patients, their families, and healthcare systems, but it relies on the often-invisible workforce of family and friend caregivers who shoulder essential health care responsibilities, frequently with inadequate training and support. Hematopoietic cell transplantation (HCT), a potentially curative but intensive treatment for many patients with blood disorders, is being increasingly offered in home-based care settings and necessitates the involvement of family caregivers for significant patient care responsibilities. However, guidelines for supporting and preparing HCT caregivers to effectively care for their loved ones at home have not yet been established. Here, informed by the literature and our collective experience as clinicians and researchers who care for diverse patients with hematologic malignancies undergoing HCT, we provide considerations and recommendations to better support and prepare family caregivers in home-based HCT and, by extension, family caregivers supporting patients with other serious illnesses at home. We suggest tangible ways to screen family caregivers for distress and care delivery challenges, educate and train them to prepare for their caregiving role, and create an infrastructure of support for family caregivers within this emerging care delivery model.

Evaluating mobile Health technology use among cancer caregivers in the digital era.

IntroductionDigital health technology-based interventions have the potential to support cancer caregivers in caregiving responsibilities and in managing their own health and well-being. The objective of this study was to examine the association between caregiving characteristics and different types of digital health technologies used in a national sample of caregivers of patients undergoing hematopoietic cell transplantation (HCT).MethodsWe conducted an online, cross-sectional survey of 948 HCT caregivers.ResultsSpousal caregivers comprised nearly one-third of respondents (27.1%) with a median age of 59 years (range: 18–80 years), compared with parents (32.9%: 38 years), adult children (28.9%: 38 years), and other (11.1%; e.g. friend, other family member: 36 years). Almost two-thirds (65.4%) of all respondents reported using an app for fitness or step counting and 41.3% reported using a smartwatch. However, spousal caregivers were the least likely group to use mobile apps (0.72; P < 0.005) or smartwatches (OR = 0.46; P < 0.005) compared with parent caregivers in models adjusted for demographics and coping style. Caregiving for six months or greater was associated with the use of fewer apps compared with caregiving for less than six months in adjusted models (OR = 0.80, P < 0.005). Caregivers of patients receiving an allogeneic transplant (i.e. non-self-donor) used more apps on average than caregivers of patients receiving an autologous transplant (i.e. self-donor) in adjusted models (OR = 1.36, P < 0.005).ConclusionDigital health technologies reflect promising avenues for supporting cancer caregivers. While digital technologies are becoming increasingly pervasive, older caregivers remain an underserved population. Future research should integrate older adult caregivers in the co-design and development activities of technology-driven caregiver support products.

Harnessing mobile health technology to support long-term chronic illness management: exploring family caregiver support needs in the outpatient setting.

ObjectiveFamily caregiving is an important public health issue, particularly with the aging population. In recent years, mobile health (mHealth) technology has emerged as a potential low-cost, scalable platform to address caregiver support needs, and thereby alleviate the burden on caregivers. This study sought to examine the support needs of family caregivers in their lived experiences of outpatient care to inform the development of a future mHealth intervention.Materails and MethodsWe conducted 20 semi-structured interviews in 2 outpatient hematopoietic cell transplant (HCT) clinics at a large academic medical center in the Midwestern United States. A thematic analysis was performed to define emerging themes.ResultsQualitative data analysis identified 5 primary themes that HCT caregivers faced: (I) lifestyle restrictions due to the patient’s immunocompromised state; (II) Unmet needs due to limitations in the current resources, including unfamiliar medical tasks without necessary trainings; and (III) caregivers’ adaptive strategies, including reformation of social relationships with family and friends. Based on these findings, we suggest 3 design considerations to guide the development of a future mHealth intervention.ConclusionsThe findings herein captured the family caregiver’s lived experiences during outpatient care. There was broad agreement that caregiving was challenging and stressful. Thus, effective and scalable interventions to support caregivers are needed. This study provided data to guide the content and design of a future mHealth intervention in the outpatient setting.

Understanding coping strategies of cancer caregivers to inform mindfulness-based interventions: A qualitative study

IntroductionCaregivers of allogeneic hematopoietic cell transplant (HCT) patients experience high levels of stress, and a better understanding of the commonly used coping strategies can guide intervention development. Mindfulness-based interventions are one promising approach that could augment and extend existing coping strategies. This study examined in-depth phone interviews conducted with HCT caregivers to gather information about coping strategies used to manage stress and other difficult emotions while taking care of their patient. MethodParticipants (N = 18; 55% female) completed phone interviews, which were transcribed and hand-coded for analysis. Thematic content analysis was used to code responses. ResultsFive primary coping strategy themes were reported: physical activity, spirituality, hobbies, social support, and avoidance. Caregivers also provided information about what they gained from the caregiving experience (e.g., increased empathy). ConclusionsBased on these findings and in an effort to move the intervention development field forward, a discussion is presented on how mindfulness-based strategies have the ability to augment existing coping strategies and perhaps modify unhelpful strategies.

The Effect of Psychosocial Interventions on Outcomes for Caregivers of Hematopoietic Cell Transplant Patients.

Hematopoietic cell transplant (HCT) patients are required to have a caregiver present for up to 100days post-transplant. Caregivers provide essential support during HCT but experience immense stress and burden. Increasing research has developed interventions for HCT caregivers. This review systematically evaluates psychosocial interventions for caregivers of HCT patients. The search yielded 12 studies (7 efficacy and 5 feasibility studies) enrolling 931 caregivers. Interventions were feasible and acceptable as evidenced by high rates of completion (70-100%) with attrition due to patient morbidity or mortality. Feasibility was augmented by flexible delivery (in-person, teleconference, smartphones, or Web-based platforms). Acceptability was demonstrated by objective measures of satisfaction. Effectiveness was found for fatigue and mental health service use, but not for burden, sleep-quality, and inconsistently for caregiver depression, anxiety, coping, and quality of life. Psychosocial interventions are feasible, acceptable, and show mixed effects on HCT caregiver outcomes.

Informal caregivers of hematopoietic cell transplant patients: a review and recommendations for interventions and research.

Informal caregivers (ICs) for medically fragile hematopoietic cell transplantation (HCT) patients are a vital unrecognized population supporting the transplant patient along the illness continuum. The long transplant recovery period shifts a greater burden of care to the patient's IC. Assessment of HCT caregivers' quality of life (QOL) and health status is critical to implementation of timely intervention and support. A literature search using several search strategies covering 1980 to 2010 identified studies on ICs of HCT patients. These studies were summarized within the caregiver concepts of QOL, role, and resources. Findings of this review were used to create recommended interventions and identify implications for further research. Although limited, research on ICs of hematopoietic call transplant patients provides beginning evidence for clinical interventions to support this caregiver population. Interventions created focus on education, psychosocial support, and self-care. Although limited randomized trials of interventions have been reported, descriptive studies provide evidence for creating intervention content that addresses the needs of ICs of HCT patients. Testing of these interventions and additional areas of research are identified. Beginning descriptive evidence provides the basis for interventions for ICs of HCT patients. These interventions support caregiver QOL and role implementation, depending on individual caregivers' resources and needs. Further evaluation and clinical research are needed.