scholarly journals Does an intervention designed to improve self‐management, social support and awareness of palliative‐care address needs of persons with heart failure, family caregivers and clinicians?

2017 ◽  
Vol 27 (3-4) ◽  
Author(s):  
Margaret D. Sebern ◽  
Nasir Sulemanjee ◽  
Mark J. Sebern ◽  
Mauricio Garnier‐Villarreal ◽  
Carol J. Whitlatch
Keyword(s):  
Heart Failure ◽  
Social Support ◽  
Palliative Care ◽  
Family Caregivers ◽  
Self Management

scholarly journals Design of a Consumer Mobile Health App for Heart Failure: Findings From the Nurse-Led Co-Design of Care4myHeart (Preprint)

2019 ◽  
Author(s):  
Leanna Woods ◽  
Jed Duff ◽  
Erin Roehrer ◽  
Kim Walker ◽  
Elizabeth Cummings
Keyword(s):  
Heart Failure ◽  
Health Care ◽  
Family Caregivers ◽  
Design Process ◽  
Mobile Health ◽  
Design Thinking ◽  
Graphical Representation ◽  
Community Dwelling ◽  
Self Management ◽  
Data Feedback

BACKGROUND Consumer health care technology shows potential to improve outcomes for community-dwelling persons with chronic conditions, yet health app quality varies considerably. In partnership with patients and family caregivers, hospital clinicians developed Care4myHeart, a mobile health (mHealth) app for heart failure (HF) self-management. OBJECTIVE The aim of this paper was to report the outcomes of the nurse-led design process in the form of the features and functions of the developed app, Care4myHeart. METHODS Seven patients, four family caregivers, and seven multidisciplinary hospital clinicians collaborated in a design thinking process of innovation. The co-design process, involving interviews, design workshops, and prototype feedback sessions, incorporated the lived experience of stakeholders and evidence-based literature in a design that would be relevant and developed with rigor. RESULTS The home screen displays the priority HF self-management components with a reminder summary, general information on the condition, and a settings tab. The health management section allows patients to list health care team member’s contact details, schedule medical appointments, and store documents. The My Plan section contains nine important self-management components with a combination of information and advice pages, graphical representation of patient data, feedback, and more. The greatest strength of the co-design process to achieve the design outcomes was the involvement of local patients, family caregivers, and clinicians. Moreover, incorporating the literature, guidelines, and current practices into the design strengthened the relevance of the app to the health care context. However, the strength of context specificity is also a limitation to portability, and the final design is limited to the stakeholders involved in its development. CONCLUSIONS We recommend health app development teams strategically incorporate relevant stakeholders and literature to design mHealth solutions that are rigorously designed from a solid evidence base and are relevant to those who will use or recommend their use.

scholarly journals 4545 Identifying Symptom Pattern Trajectories among Heart Failure Patients in a Palliative Care Trial: A Work In Progress

2020 ◽  
Vol 4 (s1) ◽  
pp. 135-135
Author(s):  
Macy Lynn Stockdill ◽  
Christopher Lee ◽  
J. Nicholas Dionne-Odom ◽  
Bradley Aouizerat ◽  
Raegan Durant ◽  
...  
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
African American ◽  
Family Caregivers ◽  
Older Adult ◽  
Growth Mixture Modeling ◽  
Work In Progress ◽  
Symptom Trajectories ◽  
Symptom Pattern ◽  
Southeastern Us

OBJECTIVES/GOALS: This work-in-progress aims to: 1) identify and differentiate symptom pattern trajectories in a sample of older adult heart failure (HF) patients over 24 weeks, and 2) examine associations between sociodemographic/clinical/physiological characteristics, dyadic health, and symptom trajectories. METHODS/STUDY POPULATION: ENABLE CHF-PC, a palliative care RCT (NCT02505425), was conducted at a Southeastern US medical center. Between 2016-2018, 415 older adult HF patients and 159 family caregivers were randomized to receive a psychoeducational intervention or usual care. Baseline sociodemographic information (age, gender, rurality, etc.) were collected. Outcome variables of interest include symptoms (Kansas City Cardiomyopathy Questionnaire (KCCQ), Functional Assessment of Chronic Illness Therapy-Palliative 14, Hospital Anxiety and Depression Scale (HADS)) and dyadic health (PROMIS-SF Global Health). We have calculated baseline descriptive statistics. Future work includes latent growth mixture modeling to identify distinct symptom trajectories and univariate associations with patient level factors. RESULTS/ANTICIPATED RESULTS: Of 415 patient participants, mean age was 64, 53% were male; 55% were African American; 26% were rural dwellers; 46% had +15.8) and low anxiety (6.7+3.6) and depressive symptoms (5.7+4.3) on the HADS. Of 159 family caregivers participants, the mean age was 57.9, 85.4% were female, 51.9% were African-American, and 65.2% were the patient’s spouse/partner. DISCUSSION/SIGNIFICANCE OF IMPACT: Limited data describes HF symptom pattern trajectories.How co-occurring symptoms affect quality of life or are affected by personal or situational factors are not well-understood. This study will help to identify factors and symptom phenotypes that may serve as targets for future interventions.

scholarly journals Giving Voice to Patients' and Family Caregivers' Needs in Chronic Heart Failure: Implications for Palliative Care Programs

2011 ◽  
Vol 14 (12) ◽  
pp. 1317-1324 ◽  
Author(s):  
David B. Bekelman ◽  
Carolyn T. Nowels ◽  
Jessica H. Retrum ◽  
Larry A. Allen ◽  
Simon Shakar ◽  
...  
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Chronic Heart Failure ◽  
Family Caregivers

scholarly journals Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

2014 ◽  
Vol 17 (9) ◽  
pp. 995-1004 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Alan Kono ◽  
Jennifer Frost ◽  
Lisa Jackson ◽  
Daphne Ellis ◽  
...  
Keyword(s):  
Heart Failure ◽  
Older Adults ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Model

scholarly journals The Contribution of Living Arrangements, Social Support, and Self-efficacy to Self-management Behaviors Among Individuals With Heart Failure

2019 ◽  
Vol 34 (4) ◽  
pp. 319-326 ◽  
Author(s):  
Elliane Irani ◽  
Scott Emory Moore ◽  
Ronald L. Hickman ◽  
Mary A. Dolansky ◽  
Richard A. Josephson ◽  
...  
Keyword(s):  
Heart Failure ◽  
Social Support ◽  
Living Arrangements ◽  
Self Efficacy ◽  
Self Management ◽  
Management Behaviors

scholarly journals Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Ubolrat Piamjariyakul ◽  
Trisha Petitte ◽  
Angel Smothers ◽  
Sijin Wen ◽  
Elizabeth Morrissey ◽  
...  
Keyword(s):  
Heart Failure ◽  
Clinical Trial ◽  
Palliative Care ◽  
Randomized Controlled Trial ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Standard Care ◽  
Controlled Trial ◽  
Randomized Controlled

Abstract Background Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home. Methods This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state. Discussion The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process. Trial registration ClinicalTrials.gov NCT04153890, Registered on 4 November 2019

The Acceptability of a Palliative Care Mobile Application for Older Adults with Heart Failure and Caregivers (Preprint)

2021 ◽  
Author(s):  
Jennifer Paola Villalobos ◽  
Sheana Salyers Bull ◽  
Jennifer Dickman Portz
Keyword(s):  
Heart Failure ◽  
Older Adults ◽  
Palliative Care ◽  
Mobile Application ◽  
Rating Scale ◽  
Digital Health ◽  
Descriptive Analysis ◽  
Advanced Heart Failure ◽  
Self Management ◽  
Smart Watch

BACKGROUND Digital health provides opportunities for patients with advanced heart failure and their caregivers to engage in palliative care, but is relatively underexplored. OBJECTIVE To test the acceptability and usability of Convoy-Pal, a mobile palliative care solution for older adults and their family and informal caregivers, i.e., their “social convoy”. METHODS Convoy-Pal includes tablet based and smart watch tools facilitating self-management and access to palliative care resources. Older adults and convoy caregivers completed an acceptability and usability interview via Zoom including open ended questions and the Mobile Application Rating Scale: User Version (uMars). Descriptive analysis was conducted to summarize the results of open-ended feedback and self-reported acceptability and usability. RESULTS Overall, the feedback from users was good (uMars M=3.96, out of 5). Open ended feedback from the interviews included improving graphs and adding monitoring features. CONCLUSIONS Convoy-Pal is perceived acceptable with good usability for both older adults and their caregivers.

scholarly journals THE ASSOCIATIONS AMONG LIVING ARRANGEMENTS, SOCIAL SUPPORT, AND SELF-MANAGEMENT IN OLDER ADULTS WITH HEART FAILURE

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 1002-1003
Author(s):  
E Irani ◽  
S Moore ◽  
R Hickman ◽  
M Dolansky ◽  
J Hughes
Keyword(s):  
Heart Failure ◽  
Social Support ◽  
Older Adults ◽  
Living Arrangements ◽  
Self Management
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