Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients

Fauer, Alex; Hoodin, Flora; LaLonde, Leah; Errickson, Josh; Runaas, Lyndsey; Churay, Tracey; Seyedsalehi, Sajjad; Warfield, Casiana; Chappell, Grant; Brookshire, Kristina; Chaar, Dima; Shin, Ji Youn; Byrd, Michelle R.; Magenau, John; Hanauer, David A.; Choi, Sung Won

doi:10.1007/s00520-018-4450-4

Cited by 32 publications

(29 citation statements)

References 24 publications

(16 reference statements)

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“…Caregivers rate the degree of troublesomeness such as caregiver burden, daily living, and finances; responses are scored on a 5-point scale from 0 (no trouble at all) to 4 (extremely troubling). The CQOLC has been demonstrated to have excellent reliability for caregivers of children undergoing pediatric HSCT (Fauer et al, 2019). This study used a Taiwanese version of the CQOLC (Tang et al, 2008).…”

Section: Measurement Instrumentsmentioning

confidence: 99%

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

Liu

Wen

Weng

et al. 2020

J Pediatr Oncol Nurs

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More than one fourth of primary caregivers report clinically significant distress during the hematopoietic stem cell transplantation (HSCT) process. Providing early support to primary caregivers could reduce caregiver distress and improve the quality of life. This study examined the effects of a three-stage caregiver support intervention designed to reduce caregiver distress and improve quality of life during pediatric HSCT hospitalization. A two-group comparative study was conducted with repeated measures. Participants were randomly assigned to an intervention group or a control group. The intervention group received the support intervention 5 days before the transplant, 14 days after transplant, and 1 week before hospital discharge. The control group received standard support provided in the hospital ward. Measures were obtained at all three time points from self-report questionnaires, which were related to anxiety, depression, perceived stress, and quality of life. Findings indicated that primary caregivers in the intervention group ( n = 22) reported significantly lower levels of perceived stress and higher levels of quality of life than the control group ( n = 23) at 14 days after transplant. In the intervention group, caregiver distress significantly decreased from pretransplant through 14 days after transplant, while over the same period caregiver quality of life significantly increased. The intervention effectively changed the trend of distress and quality of life for caregivers of children during the process of HSCT and hospitalization. The findings of this study suggest that it is important to provide early targeted interventions at critical junctures for caregivers at risk of adverse outcomes.

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Section: Measurement Instrumentsmentioning

confidence: 99%

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

Liu

Wen

Weng

et al. 2020

J Pediatr Oncol Nurs

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“…However, BMT caregivers are suddenly thrust into this new role and are left feeling unprepared. Thus, it is not surprising that BMT caregivers experience significant levels of anxiety and distress, especially during the peri-transplant period (14). Although patients are allowed to go back home if there are no serious complications observed within the first 100-days post-transplant, the risk of transplant-related morbidity and mortality continues for much longer.…”

Section: Long-term Outpatient Bmt Managementmentioning

confidence: 99%

“…At the time of hospital admission, each caregiver was given her/his own Apple® iPad and was provided with instructions to comfortably use the app throughout the inpatient, hospital stay. BMT Roadmap was associated with reduced caregiving burden and was easy-to-use and well-liked by caregivers who participated in the study (14). However, the app was targeted a priori for the inpatient setting, and to primarily serve as a source of patient-related information.…”

Section: Technology-mediated Interventions For Caregivers (Bmt Roadmap)mentioning

confidence: 99%

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

Shin

Chaar

Kedroske

et al. 2020

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BACKGROUND Family 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 caregiver burden. This study sought to examine the support needs of family caregivers in their lived experiences of outpatient care in an effort to inform the development of a future mHealth intervention. METHODS The current study is a part of a larger study in a population of family caregivers to patients undergoing blood and marrow transplant (BMT), consisting of three phases: i) tablet-based caregiver-facing intervention design (Phase I); ii) usability testing in an inpatient healthcare setting (Phase II); and iii) randomized trial to expand the user group to an outpatient setting (Phase III). In an earlier pilot study (Phases I and II), a tablet-based caregiver-facing application was developed and tested for supporting inpatient care. As part of Phase III, we conducted 20 semi-structured interviews in two outpatient BMT clinics at a large academic medical center in the Midwestern United States. A thematic analysis was performed to define emerging themes. RESULTS Our data analysis identified five primary themes that BMT caregivers faced: I. lifestyle restrictions due to the patient’s immunocompromised state; II. unfamiliar medical tasks required on behalf of patients; III. unmet needs based on existing resources; IV. adopting strategies due to the new roles; and V. reformation of social relationships with family and friends. Based on these findings, we observed three design considerations to guide the development of a future mHealth intervention: i) connecting caregivers with other caregivers through Chat Forums; ii) enabling video conferencing with healthcare providers; and iii) using readily accessible activities (e.g., journaling) to help express emotions. CONCLUSION The 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.

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“…Details of the app with descriptions of each of the components have been published previously [ 24 - 26 ]. We iteratively designed and developed the Roadmap 2.0 mHealth app following the following 7 research phases: (1) Roadmap 1.0 prototype [ 27 , 28 ]; (2) design groups to evaluate the Roadmap 1.0 prototype [ 29 ]; (3) pilot study of Roadmap 1.0 [ 30 - 32 ]; (4) extensive literature review [ 33 , 34 ]; (5) design and development of Roadmap 2.0 in the outpatient setting [ 25 ]; (6) design and development of Roadmap 2.0 in the participant home setting [ 24 ]; and (7) deployment of a National Caregiver Health survey [ 25 ]. Figure 1 shows screenshots of key app features, and Multimedia Appendix 1 provides a detailed definition of the multicomponent features of the Roadmap 2.0 app.…”

Section: Introductionmentioning

confidence: 99%

Promoting Health and Well-Being Through Mobile Health Technology (Roadmap 2.0) in Family Caregivers and Patients Undergoing Hematopoietic Stem Cell Transplantation: Protocol for the Development of a Mobile Randomized Controlled Trial

et al. 2020

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Background Cancer patients who undergo allogeneic hematopoietic stem cell transplantation are among the most medically fragile patient populations with extreme demands for caregivers. Indeed, with earlier hospital discharges, the demands placed on caregivers continue to intensify. Moreover, an increased number of allogeneic hematopoietic stem cell transplantations are being performed worldwide, and this expensive procedure has significant economic consequences. Thus, the health and well-being of family caregivers have attracted widespread attention. Mobile health technology has been shown to deliver flexible, and time- and cost-sparing interventions to support family caregivers across the care trajectory. Objective This protocol aims to leverage technology to deliver a novel caregiver-facing mobile health intervention named Roadmap 2.0. We will evaluate the effectiveness of Roadmap 2.0 in family caregivers of patients undergoing hematopoietic stem cell transplantation. Methods The Roadmap 2.0 intervention will consist of a mobile randomized trial comparing a positive psychology intervention arm with a control arm in family caregiver-patient dyads. The primary outcome will be caregiver health-related quality of life, as assessed by the PROMIS Global Health scale at day 120 post-transplant. Secondary outcomes will include other PROMIS caregiver- and patient-reported outcomes, including companionship, self-efficacy for managing symptoms, self-efficacy for managing daily activities, positive affect and well-being, sleep disturbance, depression, and anxiety. Semistructured qualitative interviews will be conducted among participants at the completion of the study. We will also measure objective physiological markers (eg, sleep, activity, heart rate) through wearable wrist sensors and health care utilization data through electronic health records. Results We plan to enroll 166 family caregiver-patient dyads for the full data analysis. The study has received Institutional Review Board approval as well as Code Review and Information Assurance approval from our health information technology services. Owing to the COVID-19 pandemic, the study has been briefly put on hold. However, recruitment began in August 2020. We have converted all recruitment, enrollment, and onboarding processes to be conducted remotely through video telehealth. Consent will be obtained electronically through the Roadmap 2.0 app. Conclusions This mobile randomized trial will determine if positive psychology-based activities delivered through mobile health technology can improve caregiver health-related quality of life over a 16-week study period. This study will provide additional data on the effects of wearable wrist sensors on caregiver and patient self-report outcomes. Trial Registration ClinicalTrials.gov NCT04094844; https://www.clinicaltrials.gov/ct2/show/NCT04094844 International Registered Report Identifier (IRRID) PRR1-10.2196/19288

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Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients

Cited by 32 publications

References 24 publications

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

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

Promoting Health and Well-Being Through Mobile Health Technology (Roadmap 2.0) in Family Caregivers and Patients Undergoing Hematopoietic Stem Cell Transplantation: Protocol for the Development of a Mobile Randomized Controlled Trial

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