Palliative Care Research Cooperative QDR

The Palliative Care Research Cooperative Group (PCRC) is a vibrant interdisciplinary research community committed to advancing rigorous palliative care science and improving care for people with serious illness.

This repository collection was supported by the Palliative Care Research Cooperative Group, with funding from the National Institute of Nursing Research (U2CNR014637). It remains open for submissions from palliative care researchers.

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1 to 10 of 11 Results

Exploring the Acceptability of a Community-Enhanced Intervention to Improve Decision Support Partnership between Patients with Chronic Kidney Disease and Their Family Caregivers Jun 30, 2024 Gazaway, Shena; Wells, Rachel; Haley, John; Gutierrez, Orlando M.; Nix-Parker, Tamara; Martinez, Isaac; Lyas, Clare; Lang-Lindsey, Katina; Knight, Richard; Odom, J. Nicholas. 2024. "Exploring the Acceptability of a Community-Enhanced Intervention to Improve Decision Support Partnership between Patients with Chronic Kidney Disease and Their Family Caregivers". Qualitative Data Repository. https://doi.org/10.5064/F6UXQABW. Palliative Care Research Cooperative QDR. V1 Project Overview The goal of this 12-month, 3-phase formative evaluation intervention pilot study was to create a patient component to a decision support training intervention in development for family caregivers, called ImPart (Improving Decisional Partnership of CKD Dyads). ImPart consists of two caregiver components: 1) coaching on effective dec...
Data for: Barriers to Hospice and Palliative Care Utilization Among Adolescent and Young Adult Cancer Patients Living in Poverty Nov 1, 2023 Mack, Jennifer. 2021. "Data for: Barriers to Hospice and Palliative Care Utilization Among Adolescent and Young Adult Cancer Patients Living in Poverty". Qualitative Data Repository. https://doi.org/10.5064/F6LBYMQO. Palliative Care Research Cooperative QDR. V2 Project Summary Background: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. Methods: We conducted qualitative interviews with 28 bereaved caregivers of AYAs...
Unplanned Admission to the ICU: A Qualitative Study Examining Family Member Experiences Nov 1, 2023 Jennerich, Ann L.. 2021. "Unplanned Admission to the ICU: A Qualitative Study Examining Family Member Experiences". Qualitative Data Repository. https://doi.org/10.5064/F6GXXBVD. Palliative Care Research Cooperative QDR. V2 Project Summary The project seeks to create knowledge about family members' experiences during hospital stays complicated by a patient's unplanned admission to the ICU. Qualitative data were collected from semi-structured interviews with families of patients who were transferred from acute care to the ICU after a clinical deterioration. All partici...
Anticoagulation Therapy on Discharge to Hospice Care Nov 1, 2023 Furuno, Jon P.. 2021. "Anticoagulation Therapy on Discharge to Hospice Care". Qualitative Data Repository. https://doi.org/10.5064/F69JKYSS. Palliative Care Research Cooperative QDR. V2 Project Summary The goal of this qualitative study was to better understand antithrombotic decision making on discharge to hospice care. This study was part of a larger mixed-methods study which examined the frequency and indication for antithrombotic prescriptions on discharge to hospice care. We recruited physicians who recently (<1 week) dischar...
Advance Care Planning in Hospice Organizations: A Qualitative Pilot Study Nov 1, 2023 Harrison, Krista. 2021. "Advance Care Planning in Hospice Organizations: A Qualitative Pilot Study". Qualitative Data Repository. https://doi.org/10.5064/F6YMWPUX. Palliative Care Research Cooperative QDR. V2 Project Summary: In 2016, we conducted a qualitative, descriptive multisite study of the practices, attitudes, and measurement of the ways in which clinicians elicit goals and values for hospice care, the provision of that care, and changes in these practices over time. At the time the study was initiated, no data existed on hospice staff members’...
Experiences of Serious Illness Conversations (SICs) to Drive Health Equity in Serious Illness Care Jul 28, 2023 Izumi, Seiko. 2023. "Experiences of Serious Illness Conversations (SICs) to Drive Health Equity in Serious Illness Care". Qualitative Data Repository. https://doi.org/10.5064/F6YCW448. Palliative Care Research Cooperative QDR. V1 Project Overview The primary purpose of this study is to describe the experience with and perception about serious illness conversations (SICs) from the perspective of patients from underserved minoritized groups. Secondary goal is to identify structure and contents that make SICs accessible and acceptable by patients from underserved minoritized g...
Data for: Building Evidence for a Concurrent Hospice and Dialysis Program for Terminal Patients with End-Stage Renal Disease (ESRD) Jun 27, 2023 Schell, Jane; Ernecoff, Natalie. 2023. "Data for: Building Evidence for a Concurrent Hospice and Dialysis Program for Terminal Patients with End-Stage Renal Disease (ESRD)". Qualitative Data Repository. https://doi.org/10.5064/F6DQNQWP. Palliative Care Research Cooperative QDR. V1 Project Overview In this study, we aimed to understand patient, family caregiver, clinician, and administrator perspectives on barriers and facilitators to implementing concurrent hospice-dialysis in diverse settings. To this end, we conducted formative interviews with patients, family caregivers, clinicians, and administrators to assess the feasib...
Data for: Conquer Fear SUPPORT: A Psychosocial Intervention in Patients with Advanced Cancer Feb 20, 2023 Reb, Anne. 2023. "Data for: Conquer Fear SUPPORT: A Psychosocial Intervention in Patients with Advanced Cancer". Qualitative Data Repository. https://doi.org/10.5064/F6FTJ1HU. Palliative Care Research Cooperative QDR. V1 Project Overview Approximately 49% of cancer survivors overall and up to 70% of vulnerable groups experience moderate to high levels of fear of cancer progression or recurrence (FOP). Recent data suggest that FOP is an even more pressing concern in advanced cancer. Patients with FOP have intrusive thoughts about cancer, unhelpful coping behaviors,...
Pilot Testing a Virtual Reality Protocol for Improving Pain and Pain-Related Distress in Patients with Advanced Stage Colorectal Cancer Sep 29, 2022 Kelleher, Sarah A.; Fisher, Hannah M.; Winger, Joseph G.; Miller, Shannon N.; Amaden, Grace H.; Somers, Tamara J.; Colloca, Luana; Uronis, Hope E.; Keefe, Francis J.. 2022. "Pilot Testing a Virtual Reality Protocol for Improving Pain and Pain-Related Distress in Patients with Advanced Stage Colorectal Cancer". Qualitative Data Repository. https://doi.org/10.5064/F6NSP4U5. Palliative Care Research Cooperative QDR. V1 Project Summary This study was done to test the feasibility, acceptability, safety, and impact of exposing patients to a single 30-minute virtual reality underwater/sea environment (called VR Blue) for reducing pain and pain-related symptoms in patients with advanced stage colorectal cancer. VR Blue is an immersive computer-generated environment fe...
Ethical Challenges When Engaging Patients and Families in End-of-Life and Palliative Care Research Jun 28, 2022 DeCamp, Matt. 2022. "Ethical Challenges When Engaging Patients and Families in End-of-Life and Palliative Care Research". Qualitative Data Repository. https://doi.org/10.5064/F6WKR6ED. Palliative Care Research Cooperative QDR. V1 Project Overview Background: Delivering high quality, patient- and family-centered care depends upon high quality end-of-life and palliative care (EOLPC) research. Engaging patients and families as advisors, partners, or co-investigators throughout the research lifecycle is widely regarded as critical to ensuring high quality research. Engagement i...

Exploring the Acceptability of a Community-Enhanced Intervention to Improve Decision Support Partnership between Patients with Chronic Kidney Disease and Their Family Caregivers

Jun 30, 2024

Gazaway, Shena; Wells, Rachel; Haley, John; Gutierrez, Orlando M.; Nix-Parker, Tamara; Martinez, Isaac; Lyas, Clare; Lang-Lindsey, Katina; Knight, Richard; Odom, J. Nicholas. 2024. "Exploring the Acceptability of a Community-Enhanced Intervention to Improve Decision Support Partnership between Patients with Chronic Kidney Disease and Their Family Caregivers". Qualitative Data Repository. https://doi.org/10.5064/F6UXQABW. Palliative Care Research Cooperative QDR. V1

Project Overview The goal of this 12-month, 3-phase formative evaluation intervention pilot study was to create a patient component to a decision support training intervention in development for family caregivers, called ImPart (Improving Decisional Partnership of CKD Dyads). ImPart consists of two caregiver components: 1) coaching on effective dec...

Data for: Barriers to Hospice and Palliative Care Utilization Among Adolescent and Young Adult Cancer Patients Living in Poverty

Nov 1, 2023

Mack, Jennifer. 2021. "Data for: Barriers to Hospice and Palliative Care Utilization Among Adolescent and Young Adult Cancer Patients Living in Poverty". Qualitative Data Repository. https://doi.org/10.5064/F6LBYMQO. Palliative Care Research Cooperative QDR. V2

Project Summary Background: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. Methods: We conducted qualitative interviews with 28 bereaved caregivers of AYAs...

Unplanned Admission to the ICU: A Qualitative Study Examining Family Member Experiences

Nov 1, 2023

Jennerich, Ann L.. 2021. "Unplanned Admission to the ICU: A Qualitative Study Examining Family Member Experiences". Qualitative Data Repository. https://doi.org/10.5064/F6GXXBVD. Palliative Care Research Cooperative QDR. V2

Project Summary The project seeks to create knowledge about family members' experiences during hospital stays complicated by a patient's unplanned admission to the ICU. Qualitative data were collected from semi-structured interviews with families of patients who were transferred from acute care to the ICU after a clinical deterioration. All partici...

Anticoagulation Therapy on Discharge to Hospice Care

Nov 1, 2023

Furuno, Jon P.. 2021. "Anticoagulation Therapy on Discharge to Hospice Care". Qualitative Data Repository. https://doi.org/10.5064/F69JKYSS. Palliative Care Research Cooperative QDR. V2

Project Summary The goal of this qualitative study was to better understand antithrombotic decision making on discharge to hospice care. This study was part of a larger mixed-methods study which examined the frequency and indication for antithrombotic prescriptions on discharge to hospice care. We recruited physicians who recently (<1 week) dischar...

Advance Care Planning in Hospice Organizations: A Qualitative Pilot Study

Nov 1, 2023

Harrison, Krista. 2021. "Advance Care Planning in Hospice Organizations: A Qualitative Pilot Study". Qualitative Data Repository. https://doi.org/10.5064/F6YMWPUX. Palliative Care Research Cooperative QDR. V2

Project Summary: In 2016, we conducted a qualitative, descriptive multisite study of the practices, attitudes, and measurement of the ways in which clinicians elicit goals and values for hospice care, the provision of that care, and changes in these practices over time. At the time the study was initiated, no data existed on hospice staff members’...

Experiences of Serious Illness Conversations (SICs) to Drive Health Equity in Serious Illness Care

Jul 28, 2023

Izumi, Seiko. 2023. "Experiences of Serious Illness Conversations (SICs) to Drive Health Equity in Serious Illness Care". Qualitative Data Repository. https://doi.org/10.5064/F6YCW448. Palliative Care Research Cooperative QDR. V1

Project Overview The primary purpose of this study is to describe the experience with and perception about serious illness conversations (SICs) from the perspective of patients from underserved minoritized groups. Secondary goal is to identify structure and contents that make SICs accessible and acceptable by patients from underserved minoritized g...

Data for: Building Evidence for a Concurrent Hospice and Dialysis Program for Terminal Patients with End-Stage Renal Disease (ESRD)

Jun 27, 2023

Schell, Jane; Ernecoff, Natalie. 2023. "Data for: Building Evidence for a Concurrent Hospice and Dialysis Program for Terminal Patients with End-Stage Renal Disease (ESRD)". Qualitative Data Repository. https://doi.org/10.5064/F6DQNQWP. Palliative Care Research Cooperative QDR. V1

Project Overview In this study, we aimed to understand patient, family caregiver, clinician, and administrator perspectives on barriers and facilitators to implementing concurrent hospice-dialysis in diverse settings. To this end, we conducted formative interviews with patients, family caregivers, clinicians, and administrators to assess the feasib...

Data for: Conquer Fear SUPPORT: A Psychosocial Intervention in Patients with Advanced Cancer

Feb 20, 2023

Reb, Anne. 2023. "Data for: Conquer Fear SUPPORT: A Psychosocial Intervention in Patients with Advanced Cancer". Qualitative Data Repository. https://doi.org/10.5064/F6FTJ1HU. Palliative Care Research Cooperative QDR. V1

Project Overview Approximately 49% of cancer survivors overall and up to 70% of vulnerable groups experience moderate to high levels of fear of cancer progression or recurrence (FOP). Recent data suggest that FOP is an even more pressing concern in advanced cancer. Patients with FOP have intrusive thoughts about cancer, unhelpful coping behaviors,...

Pilot Testing a Virtual Reality Protocol for Improving Pain and Pain-Related Distress in Patients with Advanced Stage Colorectal Cancer

Sep 29, 2022

Kelleher, Sarah A.; Fisher, Hannah M.; Winger, Joseph G.; Miller, Shannon N.; Amaden, Grace H.; Somers, Tamara J.; Colloca, Luana; Uronis, Hope E.; Keefe, Francis J.. 2022. "Pilot Testing a Virtual Reality Protocol for Improving Pain and Pain-Related Distress in Patients with Advanced Stage Colorectal Cancer". Qualitative Data Repository. https://doi.org/10.5064/F6NSP4U5. Palliative Care Research Cooperative QDR. V1

Project Summary This study was done to test the feasibility, acceptability, safety, and impact of exposing patients to a single 30-minute virtual reality underwater/sea environment (called VR Blue) for reducing pain and pain-related symptoms in patients with advanced stage colorectal cancer. VR Blue is an immersive computer-generated environment fe...

Ethical Challenges When Engaging Patients and Families in End-of-Life and Palliative Care Research

Jun 28, 2022

DeCamp, Matt. 2022. "Ethical Challenges When Engaging Patients and Families in End-of-Life and Palliative Care Research". Qualitative Data Repository. https://doi.org/10.5064/F6WKR6ED. Palliative Care Research Cooperative QDR. V1

Project Overview Background: Delivering high quality, patient- and family-centered care depends upon high quality end-of-life and palliative care (EOLPC) research. Engaging patients and families as advisors, partners, or co-investigators throughout the research lifecycle is widely regarded as critical to ensuring high quality research. Engagement i...

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