A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations

Abstract

Background Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver–facing tool to provide informational needs about the health status of patients undergoing inpatient HCT. Objective This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0). Methods Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants’ homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection. Results Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one’s own needs with the patient’s needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a “menu” of positive activities to help support caregiver health and well-being. Conclusions This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving. International Registered Report Identifier (IRRID) RR2-10.2196/resprot.4918

Electronic Health Record Portal Use by Family Caregivers of Patients Undergoing Hematopoietic Cell Transplantation: United States National Survey Study

“…Major strengths of this study include having a large well-characterized hematopoietic cell transplantation caregiver population derived from a national sample and contributing novel information about portal access by caregivers. The survey was developed with rigorous research methodology conducted in hematopoietic cell transplantation patients and caregivers, including think-aloud and verbal probing approaches [3,16,17]. Nonetheless, we recognize the limitations of the study, which include the cross-sectional design.…”

“…The purpose of this study was to learn more about family caregivers' use of electronic health record patient portals. Building on inpatient and outpatient interviews, we developed a survey to be distributed nationally (in the United States) to family caregivers of hematopoietic cell transplantation patients-the National Caregiver Health Survey [3,16,17]. We drew upon a nationally representative sample to (1) characterize hematopoietic cell transplantation caregivers; (2) describe their mental health and coping behaviors; and (3) examine the relationship between caregiver characteristics, mental health and coping, and caregiver self and care recipient portal use.…”

“…The survey is part of a larger multiphase project and was developed through cognitive interviews with hematopoietic cell transplantation caregivers, using verbal probing and think-aloud techniques [3,10,[17][18][19][20][21][22][23][24][25].…”

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

“…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.…”

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

“… 31 Studies have also investigated how technology may be used to provide positive psychological activities and promote caregiver HRQOL and resilience. 32 , 33 It is possible that enrichment events in caregiver daily life, such as positive activity exercises, will positively affect the: (1) quality of patient and caregiver relationship; (2) caregiver’s feelings of accomplishment; (3) and meaning of caregiver’s role in daily life. Ultimately, this will positively impact both the caregiver’s and patient’s well-being and health outcomes.…”