A lay navigator‐led, early palliative care intervention for African American and rural family caregivers of individuals with advanced cancer (Project Cornerstone): Results of a pilot randomized trial

Cancer ◽  
2021 ◽  
Author(s):  
J. Nicholas Dionne‐Odom ◽  
Andres Azuero ◽  
Richard A. Taylor ◽  
Chinara Dosse ◽  
Avery C. Bechthold ◽  
...  
Keyword(s):  
Palliative Care ◽  
African American ◽  
Randomized Trial ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Early Palliative Care ◽  
Rural Family ◽  
Care Intervention ◽  
Cancer Project

scholarly journals The project ENABLE Cornerstone randomized pilot trial: Protocol for lay navigator-led early palliative care for African-American and rural advanced cancer family caregivers

2019 ◽  
Vol 16 ◽  
pp. 100485 ◽  
Author(s):  
Bailey A. Hendricks ◽  
Corey Lofton ◽  
Andres Azuero ◽  
Matthew Kenny ◽  
Richard A. Taylor ◽  
...  
Keyword(s):  
Palliative Care ◽  
African American ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Pilot Trial ◽  
Trial Protocol ◽  
Cancer Family ◽  
Early Palliative Care

scholarly journals Adapting an Early Palliative Care Intervention to Family Caregivers of Persons With Advanced Cancer in the Rural Deep South: A Qualitative Formative Evaluation

2018 ◽  
Vol 55 (6) ◽  
pp. 1519-1530 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Richard Taylor ◽  
Gabrielle Rocque ◽  
Carol Chambless ◽  
Thomas Ramsey ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Formative Evaluation ◽  
Deep South ◽  
Early Palliative Care ◽  
Care Intervention

An early palliative care intervention can be confronting but reassuring: A qualitative study on the experiences of patients with advanced cancer

2019 ◽  
Vol 33 (7) ◽  
pp. 783-792 ◽  
Author(s):  
Monica Fliedner ◽  
Sofia Zambrano ◽  
Jos MGA Schols ◽  
Marie Bakitas ◽  
Christa Lohrmann ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advanced Cancer Patients ◽  
End Of Life Decisions ◽  
Early Palliative Care ◽  
Network Support ◽  
Care Intervention ◽  
Life Decisions

Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions. Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.

Palliative Care for Family Caregivers

2020 ◽  
Vol 38 (9) ◽  
pp. 926-936 ◽  
Author(s):  
Sorayya Alam ◽  
Breffni Hannon ◽  
Camilla Zimmermann
Keyword(s):  
Risk Factors ◽  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Adverse Outcomes ◽  
Family Risk Factors ◽  
Family Risk ◽  
Early Palliative Care ◽  
Guide Care

Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient’s declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient’s death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver’s situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.

Supporting family caregivers: Needs beyond direct caregiving.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 16-16
Author(s):  
Diane E. Holland ◽  
Catherine E. Vanderboom ◽  
Joan M. Griffin ◽  
Ann Marie Dose ◽  
Ellen M. Wild ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Preliminary Data ◽  
Self Care ◽  
Caregiver Support ◽  
Medical Needs ◽  
Rural Family ◽  
Caregiver Needs

16 Background: Family caregivers have been shown to have their own unique challenges when caring for someone with advanced cancer. These challenges may be more pronounced among rural caregivers. We present early lessons regarding caregiver needs from an intervention study that provides teaching, guidance, and counseling to rural family caregivers of individuals who received palliative care in the hospital and transitioned home. Methods: A randomized clinical trial is underway to test the efficacy of a care model that focuses on supporting rural family caregivers’ medical needs, self-care, and direct caregiving needs. We have developed a nurse-led, technology-enhanced intervention for family caregivers delivered over 8 weeks after hospital discharge of those receiving palliative care consults. The intervention includes video and phone visits between a palliative care nurse and caregiver. Caregiver needs and nurse strategies are documented using a standardized terminology in an electronic datafile. Results: Preliminary data from 21 family caregivers of individuals with advanced cancer who completed the intervention to date indicate caregivers personally had an average of 2.2 chronic conditions (up to 10) and were taking an average of 3.14 (up to 11) medications. In addition to challenges providing direct care, caregivers reported difficulty managing stress or depression (7/21; 33.3%); issues related to grief (6/21; 28.5%); inadequate sleep and rest (6/21; 28.5%), low or no income or uninsured medical expenses (5/21; 23.8%); and interpersonal challenges within families and with friends (5/21, 23.8%). Conclusions: Preliminary data from our study suggest that assessing the caregiver’s individual needs related to well being and self-care as well as direct caregiving is imperative to delivering caregiver support services that can improve the ability of family caregivers to provide care for their loved ones with advanced cancer. Clinical trial information: NCT03339271.

scholarly journals A cluster randomized trial of a primary palliative care intervention (CONNECT) for patients with advanced cancer: Protocol and key design considerations

2017 ◽  
Vol 54 ◽  
pp. 98-104 ◽  
Author(s):  
Claire L. Becker ◽  
Robert M. Arnold ◽  
Seo Young Park ◽  
Margaret Rosenzweig ◽  
Thomas J. Smith ◽  
...  
Keyword(s):  
Palliative Care ◽  
Randomized Trial ◽  
Advanced Cancer ◽  
Cluster Randomized Trial ◽  
Design Considerations ◽  
Care Intervention ◽  
Cluster Randomized

scholarly journals Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure

2020 ◽  
Vol 3 (4) ◽  
pp. e202583 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Deborah B. Ejem ◽  
Rachel Wells ◽  
Andres Azuero ◽  
Macy L. Stockdill ◽  
...  
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Heart Failure ◽  
Early Palliative Care ◽  
Care Intervention

Single early palliative care intervention added to usual oncology care for patients with advanced cancer: A randomized controlled trial (SENS Trial)

2021 ◽  
pp. 026921632110053
Author(s):  
Steffen Eychmüller ◽  
Susanne Zwahlen ◽  
Monica C Fliedner ◽  
Peter Jüni ◽  
Daniel M Aebersold ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Health Related Quality ◽  
Early Palliative Care ◽  
Care Intervention ◽  
Related Quality ◽  
Health Related ◽  
Oncology Care

Background: International oncology societies recommend early palliative care. Specific models to integrate early palliative care efficiently into clinical practice are debated. The authors designed a study to look at the quantitative and qualitative outcomes of an early palliative care intervention in oncological care to decrease stress and improve quality of life. Aims: To compare a single structured early palliative care intervention added to a usual oncology care in terms of distress and health-related quality of life at baseline compared to 6 months after enrollment. Design: This multicenter randomized controlled trial (NCT01983956) enrolled adult patients with advanced cancer. Participants were either randomly assigned to usual oncology care alone or usual care plus a structured early palliative care intervention. Setting/participants: One hundred fifty adult patients with a variety of advanced cancer diagnoses were randomized. Seventy-four participants were in the intervention and 76 participants in the control group. The primary outcome was the change in patient distress assessed by the National Comprehensive Cancer Network distress thermometer at 6 months. Health-related quality of life, the secondary outcome, was assessed by the Functional Assessment of Cancer Therapy–General Questionnaire. Results: The results showed no significant effect of the early palliative care intervention neither on patient distress nor on health-related quality of life. Conclusion: The addition of an early intervention to usual care for patients with advanced cancer did not improve distress or quality of life. Thus, patients may need more intensive early palliative care with continuous professional support to identify and address their palliative needs early.

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