scholarly journals An Individualized Dyadic Problem-Solving Education Intervention for Patients and Family Caregivers During Allogeneic Hematopoietic Stem Cell Transplantation

2010 ◽  
Vol 33 (2) ◽  
pp. E24-E32 ◽  
Author(s):  
Margaret Bevans ◽  
Kathleen Castro ◽  
Patricia Prince ◽  
Nonniekaye Shelburne ◽  
Olena Prachenko ◽  
...  
Keyword(s):  
Stem Cell ◽  
Problem Solving ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Family Caregivers ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Education Intervention ◽  
Hematopoietic Stem

scholarly journals A problem-solving education intervention in caregivers and patients during allogeneic hematopoietic stem cell transplantation

2013 ◽  
Vol 19 (5) ◽  
pp. 602-617 ◽  
Author(s):  
Margaret Bevans ◽  
Leslie Wehrlen ◽  
Kathleen Castro ◽  
Patricia Prince ◽  
Nonniekaye Shelburne ◽  
...  
Keyword(s):  
Stem Cell ◽  
Problem Solving ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Education Intervention ◽  
Hematopoietic Stem

scholarly journals 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

10.2196/19288 ◽  
2020 ◽  
Vol 9 (9) ◽  
pp. e19288
Author(s):  
Michelle Rozwadowski ◽  
Manasa Dittakavi ◽  
Amanda Mazzoli ◽  
Afton L Hassett ◽  
Thomas Braun ◽  
...  
Keyword(s):  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Family Caregivers ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Mobile Health ◽  
Well Being ◽  
Health Technology ◽  
Hematopoietic Stem

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

scholarly journals 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 (Preprint)

2020 ◽  
Author(s):  
Michelle Rozwadowski ◽  
Manasa Dittakavi ◽  
Amanda Mazzoli ◽  
Afton L Hassett ◽  
Thomas Braun ◽  
...  
Keyword(s):  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Family Caregivers ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Mobile Health ◽  
Well Being ◽  
Health Technology ◽  
Hematopoietic Stem

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. CLINICALTRIAL ClinicalTrials.gov NCT04094844; https://www.clinicaltrials.gov/ct2/show/NCT04094844 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/19288

scholarly journals Care performed by family caregivers of children submitted to hematopoietic stem cell transplantation

2019 ◽  
Vol 27 ◽  
Author(s):  
Ingrid Meireles Gomes ◽  
Maria Ribeiro Lacerda ◽  
Ana Paula Hermann ◽  
Jéssica Alline Pereira Rodrigues ◽  
Débora Cristina Paes Zatoni ◽  
...  
Keyword(s):  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Family Caregivers ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Emotional Support ◽  
The Body ◽  
Structured Interviews ◽  
Hematopoietic Stem

ABSTRACT Objective: to know the care provided by family caregivers of children submitted to hematopoietic stem cell transplantation. Method: the Grounded Theory was used as methodology. The study comprised four sample groups, comprising 36 caregivers. Data were collected by semi-structured interviews and analyzed according to the coding proposed by Strauss and Corbin in three phases: open, axial and selective. Results: eight propositions were identified for the care provided to the child in the researched context, namely administering medications; attention to cleaning issues; care with water and food intake; care with the body; experiencing protective isolation; addressing the child’s need for emotional support; addressing the child’s self-care; and facing complications. Conclusion: the different aspects in which the caregiver acts in the care of the child were understood. Such care equips the health team to elaborate measures for guidance and preparation of home care that are effective and directed to the needs of the patient and their family. The understanding of the care that they accomplish enables the caregiver a greater understanding of their role, as well as of the decisions they will make by their being under treatment.

scholarly journals Prognostic Understanding, Quality of Life, and Mood in Patients Undergoing Hematopoietic Stem Cell Transplantation

Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 1296-1296
Author(s):  
Areej El-Jawahri ◽  
Lara Traeger ◽  
Kailyn Kuzmuk ◽  
Justin Eusebio ◽  
Harry Vandusen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Family Caregivers ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Depression Symptoms ◽  
Hematopoietic Stem

Abstract Background: In advanced cancers, patients' prognostic perceptions influence their medical decisions. However, little is known about how patients with hematologic malignancies undergoing hematopoietic stem cell transplantation (HCT) and their family caregivers (FC) understand their prognosis. We examined prognostic understanding in these patients and their FC during hospitalization for HCT and its relationship with quality of life (QOL) and mood. Methods: We conducted a longitudinal study of patients hospitalized for HCT and their FC. At baseline (6 days pre-HCT), we used a 10-item questionnaire to measure patients' and FC information preferences and perception of prognosis. We also asked oncologists to estimate the patients' prognosis. At day-6, day+1, day+8 of HCT, we assessed QOL (Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT)), and mood (Hospital Anxiety and Depression Scale). We evaluated the relationship between participants' prognostic understanding and their QOL and mood during hospitalization for HCT using multivariable linear mixed models. Results: We enrolled 97% of consecutively eligible patients undergoing autologous (n=30), myeloablative (n=30) or reduced intensity (n=30) allogeneic HCT. Most patients (80/90, 88.9%) and FC (41/47, 87.1%) believed that it is extremely or very important to know about prognosis. However, the majority of patients (66/85, 77.6%) and FC (33/46, 71.7%) reported an inaccurate and more optimistic perception of the patients' prognosis compared to the oncologist (P < 0.0001) [Figure 1]. Patients with an accurate understanding of their prognosis reported worse QOL (F = 4.3, P = 0.03) and a higher rate of depression (F = 4.4, P = 0.04) with worsening depressive symptoms over time (F = 4.13, P = 0.006) compared to patients with an inaccurate prognostic perception. Conclusions: The majority of patients and FC reported inaccurate and more optimistic perception of prognosis compared with the oncologist. Patients with an accurate perception of their prognosis had lower QOL, higher rates of depression, and worsening depression symptoms during hospitalization for HCT. Interventions are needed to improve prognostic understanding, while providing them with the psychosocial support they need to cope with this difficult information. Figure 1: Patients', Family Caregivers', and Oncologists' Prognostic Perception Figure 1:. Patients', Family Caregivers', and Oncologists' Prognostic Perception Disclosures Off Label Use: Sorafenib for FLT3-ITD AML.

scholarly journals Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation

Cancer ◽  
2014 ◽  
Vol 121 (6) ◽  
pp. 951-959 ◽  
Author(s):  
Areej R. El-Jawahri ◽  
Lara N. Traeger ◽  
Kailyn Kuzmuk ◽  
Justin R. Eusebio ◽  
Harry B. Vandusen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Family Caregivers ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Hematopoietic Stem
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