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 ◽  
...  

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

2017 ◽  
Vol 15 (6) ◽  
pp. 628-637 ◽  
Author(s):  
Miguel Julião ◽  
Fátima Oliveira ◽  
Baltazar Nunes ◽  
António Vaz Carneiro ◽  
António Barbosa

ABSTRACTObjective:Dignity therapy (DT) is a brief form of psychotherapy developed for patients living with a life-limiting illness that has demonstrated efficacy in treating several dimensions of end-of-life psychological distress. Our aim was to determine the influence of DT on demoralization syndrome (DS), the desire for death (DfD), and a sense of dignity (SoD) in terminally ill inpatients experiencing a high level of distress in a palliative care unit.Method:A nonblinded phase II randomized controlled trial was conducted with 80 patients who were randomly assigned to one of two groups: the intervention group (DT + standard palliative care [SPC]) or the control group (SPC alone). The main outcomes were DS, DfD, and SoD, as measured according to DS criteria, the Desire for Death Rating Scale, and the Patient Dignity Inventory (PDI), respectively. All scales were assessed at baseline (day 1) and at day 4 of follow-up. This study is registered with http://www.controlled-trials.com/ISRCTN34354086.Results:Of the 80 participants, 41 were randomized to DT and 39 to SPC. Baseline characteristics were similar between the two groups. DT was associated with a significant decrease in DS compared with SPC (DT DS prevalence = 12.1%; SPC DS prevalence = 60.0%; p < 0.001). Similarly, DT was associated with a significant decrease in DfD prevalence (DT DfD prevalence = 0%; SPC DfD prevalence = 14.3%; p = 0.054). Compared with participants allocated to the control group, those who received DT showed a statistically significant reduction in 19 of 25 PDI items.Significance of results:Dignity therapy had a beneficial effect on the psychological distress encountered by patients near the end of life. Our research suggests that DT is an important psychotherapeutic approach that should be included in clinical care programs, and it could help more patients to cope with their end-of-life experiences.


Trials ◽  
2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Diane E. Holland ◽  
Catherine E. Vanderboom ◽  
Jay Mandrekar ◽  
Bijan J. Borah ◽  
Ann Marie Dose ◽  
...  

Abstract Background Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs’ health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers’ health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention’s effect. Methods The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. Discussion This study addresses 2 independent yet interrelated health care foci—transitional care and palliative care—by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. Trial registration ClinicalTrials.gov NCT03339271. Registered on 13 November 2017. Protocol version: 11.


2008 ◽  
Vol 39 (5) ◽  
pp. 713-723 ◽  
Author(s):  
S. Moorey ◽  
E. Cort ◽  
M. Kapari ◽  
B. Monroe ◽  
P. Hansford ◽  
...  

BackgroundCognitive behaviour therapy (CBT) has been shown to reduce psychological morbidity in people with cancer, but no randomized controlled trial (RCT) exists in palliative care. We aimed to determine whether home care nurses could be taught to deliver basic cognitive behavioural techniques and so reduce symptoms of anxiety and depression.MethodClinical nurse specialists (CNSs) at St Christopher's Hospice were randomly allocated to receive training in CBT or continue their usual practice. At the end of the trial, nurses were rated on the Cognitive Therapy First Aid Rating Scale (CTFARS) for CBT competence. Home care patients who scored as possible cases on the Hospital Anxiety and Depression Scale (HADS) entered the trial. Participants received home care nursing visits. Assessments were carried out at baseline, 6, 10 and 16 weeks.ResultsEight nurses received CBT training and seven continued practice as usual. The mean CTFARS scores were 35.9 for the CBT nurses and 19.0 for the controls (p=0.02). A total of 328 patients (54%) were possible cases and 80 entered the trial; most of those excluded were too ill to participate. There was an interaction between group and time: individuals receiving CBT had lower anxiety scores over time [coefficient −0.20, 95% confidence interval (CI) −0.35 to −0.05, p=0.01]. No effect of the training was found for depression.ConclusionsIt is possible to conduct a randomized trial of psychological interventions in palliative care but there is considerable attrition from physical morbidity and mortality. Nurses can learn to integrate basic CBT methods into their clinical practice. This training may be associated with better outcomes for symptoms of anxiety.


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