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 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 An Explorative Study of Qualities in Interactive Processes with Children and Their Parents in Music Therapy during and after Pediatric Hematopoietic Stem Cell Transplantation

Medicines ◽  
2019 ◽  
Vol 6 (1) ◽  
pp. 28
Author(s):  
Lena Uggla ◽  
Katarina Mårtenson Blom ◽  
Lars Bonde ◽  
Britt Gustafsson ◽  
Björn Wrangsjö
Keyword(s):  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Music Therapy ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Affect Regulation ◽  
Well Being ◽  
Hematopoietic Stem ◽  
Related Quality

Background: Hematopoietic stem cell transplantation (HSCT) is an established treatment for severe disorders of the pediatric hematopoietic system. However, there is a need for supportive interventions due to physiological and psychological strain. Music therapy is used in health care to help patients through difficult experiences and enable well-being. Our previous randomized studies showed significantly reduced heart rates four to eight hours after intervention as well as increased health-related quality of life. Methods: The aim of this qualitative study was to explore the participants’ and parents’ own experiences of the interactive processes during the music therapy intervention. Six families were included. The data collection used collaborative research interviews. An independent psychologist facilitated the interviews with the children, the parents, and the music therapist and also performed the analysis. Results: Three main themes emerged: experiences of competency and recognition of self, interactive affect regulation as change potential, and importance of the therapeutic relationship. Conclusions: For the participants, music therapy developed into a significant and helpful experience, an important ingredient in coping with and managing the treatment period at the hospital.

Psychophysical well-being profiles in patients before hematopoietic stem cell transplantation

2018 ◽  
Vol 27 (3) ◽  
pp. 962-968
Author(s):  
Aleksandra Kroemeke ◽  
Zuzanna Kwissa-Gajewska ◽  
Małgorzata Sobczyk-Kruszelnicka
Keyword(s):  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Well Being ◽  
Hematopoietic Stem

scholarly journals Spiritual Well-Being in Hispanic and Non-Hispanic Survivors of Allogeneic Hematopoietic Stem Cell Transplantation

2015 ◽  
Vol 33 (6) ◽  
pp. 635-654 ◽  
Author(s):  
Patricia Prince ◽  
Sandra A. Mitchell ◽  
Leslie Wehrlen ◽  
Richard Childs ◽  
Bipin Savani ◽  
...  
Keyword(s):  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Well Being ◽  
Hematopoietic Stem ◽  
Spiritual Well Being

scholarly journals Evaluation of Quality of Life and Care Needs of Turkish Patients Undergoing Hematopoietic Stem Cell Transplantation

2016 ◽  
Vol 2016 ◽  
pp. 1-13
Author(s):  
Neslisah Yasar ◽  
Semiha Akin
Keyword(s):  
Quality Of Life ◽  
Stem Cell ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Well Being ◽  
Care Needs ◽  
Hematopoietic Stem

This descriptive study explored the quality of life and care needs of Turkish patients who underwent hematopoietic stem cell transplantation. The study sample consisted of 100 hematopoietic stem cell transplant patients. Their quality of life was assessed using Functional Assessment of Cancer Therapy-Bone Marrow Transplant Scale. The mean patient age was 44.99 ± 13.92 years. Changes in sexual functions, loss of hair, loss of taste, loss of appetite, and sleep disturbances were the most common symptoms. The quality of life of transplant patients was moderately affected; the functional well-being and social/family well-being subscales were the most adversely and least negatively affected (12.13 ± 6.88) dimensions, respectively. Being female, being between 50 and 59 years of age, being single, having a chronic disease, and having a history of hospitalization were associated with lower quality of life scores. Interventions to improve functional status, physical well-being, and emotional status of patients during the transplantation process may help patients cope with treatment-related impairments more effectively. Frequent screening and management of patient symptoms in order to help patients adapt to life following allogeneic hematopoietic stem cell transplantation are crucial for meeting care needs and developing strategies to improve their quality of life.

scholarly journals From “being at war” to “getting back on your feet”: A qualitative study on experiences of patients with systemic sclerosis treated with hematopoietic stem cell transplantation

2020 ◽  
Vol 5 (3) ◽  
pp. 202-209
Author(s):  
Julia Spierings ◽  
Carolijn JM de Bresser ◽  
Femke CC van Rhijn-Brouwer ◽  
Arwen Pieterse ◽  
Madelon C Vonk ◽  
...  
Keyword(s):  
Stem Cell ◽  
Systemic Sclerosis ◽  
Hematopoietic Stem Cell Transplantation ◽  
Stem Cell Transplantation ◽  
Cell Transplantation ◽  
Hematopoietic Stem Cell ◽  
Social Issues ◽  
Well Being ◽  
Hematopoietic Stem ◽  
Diffuse Cutaneous Systemic Sclerosis

Objectives: To gain insight into the experiences of patients with diffuse cutaneous systemic sclerosis during and after autologous hematopoietic stem cell transplantation. Methods: Semi-structured interviews were conducted with patients who underwent hematopoietic stem cell transplantation in four university hospitals in the Netherlands. Interviews were transcribed verbatim and thematically analyzed. Results: Nine male and seven female patients were interviewed, median age 47 years (range: 27–68). Patients mentioned their life was severely disrupted before hematopoietic stem cell transplantation and remained unsettled a long time after treatment. Uncertainty because of disease progression, loss of control over health and the sense of time and fear of treatment-related adverse events were common during hospitalization. After hematopoietic stem cell transplantation, patients experienced more physical limitations than they had expected, and recovery took longer and was mentally taxing. Going back to work and finding a new balance in personal relations and social life was complicated. Patients described various strategies to deal with challenges. Family and friends provided essential support, although many experienced a dwindling social circle. Most patients also appreciated peer support. All patients were satisfied with the low threshold for contact with physicians and nurses during hospitalization. However, aftercare focused on medical aspects rather than on psychological well-being and social issues. Moreover, patients would have preferred to be better prepared on what to expect after discharge, and lacked information about self-management, prognosis, optimal recovery, work, sexuality, and family planning. Conclusion: Hematopoietic stem cell transplantation has a major physical and psychological impact on patients with diffuse cutaneous systemic sclerosis. The course of recovery after this intensive therapy was unexpectedly long for some patients and offer of support was far less pro-active post-HSCT compared to pre-HSCT and during HSCT.

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.

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