Online interventions geared toward increasing resilience and reducing distress in family caregivers

Shin, Ji Youn; Choi, Sung Won

doi:10.1097/spc.0000000000000481

Cited by 42 publications

(28 citation statements)

References 40 publications

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“…To our knowledge, this study of more than 900 caregivers from a national US sample is the largest published sample of hematopoietic cell transplantation caregivers surveyed to date focused on caregivers' use of their own and their care recipients' health portal [3,24,25,31]. Our study highlights hematopoietic cell transplantation caregiver demographics, mental health, coping behaviors, caregiving characteristics, and care recipient characteristics.…”

Section: Discussionmentioning

confidence: 99%

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

Gupta¹,

Raj²,

Hoodin³

et al. 2021

JMIR Cancer

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Background As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use. Methods An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire–4, coping with the Brief COPE, and caregiver portal use to manage care recipient’s and their own health. Results We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID) RR2-10.2196/4918

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Section: Discussionmentioning

confidence: 99%

“…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].…”

Section: Studymentioning

confidence: 99%

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

Gupta¹,

Raj²,

Hoodin³

et al. 2021

JMIR Cancer

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“…The survey was implemented by the Center for Survey Research at Indiana University (LY). The survey itself was developed through cognitive interviews of HCT caregivers using verbal probing and think-aloud approaches [8, 10,30,[22][23][24][25][26][27][28][29].…”

Section: Methodsmentioning

confidence: 99%

Evaluating health technology engagement among family caregivers of patients undergoing hematopoietic cell transplantation

Raj

Gupta

Hoodin

et al. 2021

Preprint

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Purpose: Digital health technology-based interventions have the potential to support caregivers in their caregiving responsibilities and in managing their own health and well-being. Designing digital health technologies to support caregivers of patients undergoing hematopoietic cell transplantation requires evaluating their engagement with these technologies. The objective of this study was to examine the association between caregiving characteristics and different types of digital health technologies used. Methods: We conducted an online cross-sectional, national survey of 948 unpaid family caregivers of patients undergoing hematopoietic cell transplantation. Results: Almost two-thirds (65.4%) of respondents reported using an app for fitness or step counting, while 41.3% reported using a smartwatch. The average number of apps used was 3.3 (range 0-9). In adjusted models, adult children who were caregivers (OR=5.82, p<0.005) and caregivers of another relative (OR=2.51, p<0.005) were significantly more likely to use a fitness tracker than caregivers of a child. Caregiving for six months or greater was associated with 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 used more apps on average than caregivers of patients receiving an autologous transplant, in adjusted (OR=1.36, p<0.005) models.Conclusion: Digital health technologies may reflect promising avenues for supporting caregivers of patients undergoing HCT. The rapid insurgence of telehealth, propelled by the current COVID-19 pandemic, emphasizes the need for a better understanding of digital health technology for future study design.

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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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Online interventions geared toward increasing resilience and reducing distress in family caregivers

Cited by 42 publications

References 40 publications

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

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

Evaluating health technology engagement among family caregivers of patients undergoing hematopoietic cell transplantation

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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