Verifying intervention fidelity procedures for a palliative home care intervention with pilot study results.

Fidelity (consistency of intervention implementation) is essential to rigorous research. Intervention fidelity maintains study internal validity, intervention reproducibility, and transparency in the research conduct. The purpose of this manuscript is to describe intervention fidelity strategies/procedures developed for a pilot study testing a new palliative care nursing intervention (FamPALcare) for families managing advanced lung disease. The procedures described herein are based on the fidelity best practices recommendations from the NIH Consortium. An evidence-based checklist guided observational ratings of the fidelity procedures used and the intervention content implemented in each intervention session. Descriptive data on how participants understood (received), enacted, or used the intervention information were summarized. The fidelity checklist observational scores found ≥93% of the planned intervention content was implemented, and the fidelity strategies were adhered to consistently during each intervention session. The small variation (7%) in implementation was expected and related to participants' varying experiences, input, and/or questions. The helpfulness scale items include participants' ability to use home care resources, to anticipate and manage end-of-life symptoms, and to use Advance Directive forms. The high ratings (M = 4.4) on the 1-5 (very helpful) Likert Helpfulness Scale verified participants utilized the information from the intervention. Furthermore, there was an improvement in patients' breathlessness scores and completion of Advance Directive forms at 3 months after baseline. It is essential to plan intervention fidelity strategies to use throughout a study and to report fidelity results.

Impact of Sleep Apnea, Daytime Sleepiness, Comorbidities, and Depression on Patients' Heart Failure Health Status.

There is a gap in current research on common factors that impact patients with advanced heart failure (HF). The purpose of this secondary data analysis was to explore associations of those factors with three empirically verified measures of HF-related clinical, physical, and mental health status. Baseline data of 198 advanced systolic HF (EF < 40%) patients were analyzed. Patients were 61.6% male, with a mean age of 62.3 (SD = 13.2) years. The multivariable general linear modeling results indicated that patients who had poorer scores on HF-related clinical status were those who had sleep apnea (ß = -6.6, p < .05), daytime sleepiness (ß = -9.4, p < .01), four or more comorbidities (ß = -11.8, p < .001), and depression (ß = -18.7, p < .001). Depression was associated with all three measures of HF-related health status. These findings alert nurses to assess for sleep apnea and to use known screening measures for daytime sleepiness, depression, and comorbidities.

Themes of Stressors, Emotional Fatigue, and Communication Challenges Found in Mobile Care Discussion Sessions With Patients Requiring Lifelong Home Parenteral Nutrition Infusions.

BACKGROUND: The purpose of this article is to examine themes and topics that emerged from 35 discussion sessions with teens and young adults requiring long-term home parenteral nutrition (HPN) intravenous infusions. The goal was to gain a more detailed understanding of participants' challenges and successes of living with HPN. METHODS: These patients were invited to attend 3 discussion group sessions facilitated by health professionals. A secure iPad Mini was selected as the mobile tablet device for hosting these encrypted audio-visual group discussions. Content analysis, a standard research data-sorting technique, was used to summarize the anonymous data. Words, phrases, and topics in patients' discussions were coded and grouped together with similar concepts and subsequently categorized into themes. RESULTS: Themes in these discussions were related to patients' daily, complex management of HPN. These "themes" included having multiple repetitive illness-related stressors and how those stressors were managed; managing emotions; communication challenges with professionals, family, friends, and using social media; and lastly, the least frequent but no less important theme discussed was how HPN effects their daily lives. CONCLUSION: Teens and young adults living with lifelong HPN face a variety of unique psychological, physical, and emotional stressors and may benefit from numerous methods for managing these challenges.

Using telehealth to assess depression and suicide ideation and provide mental health interventions to groups of chronically ill adolescents and young adults.

Telehealth distance health care is a significant resource for young, chronically ill patient populations given their numerous medical complexities and their concomitant depression and/or suicide ideation experiences. This manuscript shares the telehealth methods used to prepare for a larger study of interventions for increasing adolescents' and young adults' chronic care resiliency and skills for preventing depression. The young patients in this study were prescribed lifelong home parenteral nutrition infusions, treatment for those with short gut bowel diseases. The training methods for our mental health nurse and psychologist to conduct depression and suicide ideation assessments from a distance are presented. The study implementation methods of group facilitated interventions and discussion are reviewed. The group discussions were conducted via audiovisual telehealth devices over encrypted firewall-protected connections with patients in their own homes and professionals in an office. The results of assessments of the 40 participants, 25% (n = 10) with depressive symptoms or suicide ideation, are described. Following participants' assessments, their subsequent depression measures were all in the normal range, without any suicide ideation, across the year of the study. Patient evaluation ratings were high in the areas of being able to connect with other young patients in similar situations, using the audiovisual equipment, and learning new useful information from the interventions. The methods developed for the study ensured that the safety and well-being of participants were supported through telehealth.

Maintaining Intervention Fidelity When Using Technology Delivery Across Studies.

The current standard in healthcare research is to maintain scientific fidelity of any intervention being tested. Fidelity is defined as the consistent delivery of interventions that ensures that all participants are provided the same information, guidance, and/or materials. Notably, the methods for ensuring fidelity of intervention delivery must also be consistent. This article describes our Intervention and Technology Delivery Fidelity Checklists used to ensure consistency. These checklists were completed by trained nurse observers who rated the intervention implementation and the technology delivery. Across our clinical trials and pilot studies, the fidelity scores were tabulated and compared. Intervention information and materials were delivered by a variety of devices including telehealth monitors, videophones, and/or iPads. Each of the devices allows audiovisual connections between health professionals from their offices and patients and participants in their homes. Our checklists guide the monitoring of fidelity of technology delivery. Overall checklist ratings across our studies demonstrate consistent intervention, implementation, and technology delivery approaches. Uniquely, the fidelity checklist verifies the interventionist's correct use of the technology devices to ensure consistent audiovisual delivery. Checklist methods to ensure intervention fidelity and technology delivery are essential research procedures, which can be adapted for use by researchers across multiple disciplines.

Palliative care for rare advanced lung diseases in underserved Appalachia: Study protocol for a randomized controlled trial.

AIM: To pilot test a home end-of-life and palliative care intervention for family caregivers and patients with rare advanced lung diseases and to estimate effect-size for the power analysis in a future clinical trial. DESIGN: This study uses a parallel randomized control trial. Families are randomly assigned to the intervention group or the control group in a 1:1 fashion. METHODS: The study population includes patients with rare advanced lung diseases and their family caregivers who are involved in patients' home care. The control group receives standard care through their hospital or outpatient clinics. The intervention group receives standard care plus 2-weekly home end-of-life and palliative care coaching by experienced community nurses. Primary outcome is breathlessness measured by shortness of breath scale. Secondary outcomes are: (a) caregivers' anxiety and depression measures; (b) the presence of patient's signed advance directives in the medical record or not; and (c) Helpfulness of intervention measured by self-report Helpfulness scale. The study was funded in October 2018 and received ethical Institutional Review Board approval in February 2019. DISCUSSION: West Virginia has one of the highest incidence rates of lung disease deaths in the nation. However, there is inadequate home end-of-life and palliative care for this underserved population. This is an initial interventional study of nurse-led coaching home-based palliative care for rare advanced lung diseases in rural Appalachia. Developing research collaboration with clinicians is essential for enrolment. Enrolment was successful due to regular meetings with pulmonologists who screened patients per the study inclusion criteria in their specialty clinic and made direct referrals to the research assistants. Results of this study will be used in the future trial. IMPACT: The findings will contribute to the evidence-based home nursing care, planning for family/patient preferences and supportive end-of-life palliative care for managing advanced lung diseases at home. TRIAL REGISTRATION: ClinicalTrials.gov identifier NCT03813667; registered January 23, 2019. https://clinicaltrials.gov/ct2/show/NCT03813667.

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.

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.

Pearls and Pitfalls of Team Science.

Formidable health problems are often best addressed by teams of scientists with varied expertise. This diversity among team members and complexities in managing teams can lead to challenges in designing, funding, conducting, and reporting research. Team science difficulties can be addressed by sophisticated planning, frequent reassessment and realignment of team strategies with goals, and consistent transparent communication. This article addresses specific strategies to build and sustain research teams, manage team meetings, strategically develop publications and grants, thrive in the midst of disciplinary and individual team member differences, embrace new ideas and change to maintain creativity, and build future team scientists and projects. The potential value in team science justifies the effort required to build and maintain efficient and effective research teams.

The effect of nurse-led group discussions by race on depressive symptoms in patients with heart failure.

BACKGROUND: African Americans with heart failure (HF) have the highest rates of depression among all ethnicities in the USA. OBJECTIVES: To compare the effects by race on depressive symptoms and topics discussed in the first clinic appointment after HF hospitalization. METHODS: This study is a secondary analysis of data from a randomized clinical trial testing a patient group discussion of HF self-management with 93 Caucasians and 77 African Americans. RESULTS: Reduction in depressive symptoms was significantly greater among African American patients within the intervention group (F = 3.99, p = .047) than controls. There were significant differences by race in four topics (dietitian referral, appointment date, help preparing discussion questions, and advice on worsening HF symptoms) concerning patient-physician discussions. CONCLUSION: The intervention showed greater effect in reducing depressive symptoms among African Americans than Caucasians. Preparing patients for discussions at physician appointments on diet, depressive symptoms, and HF symptoms is recommended.

Launching Successful Beginnings for Early Career Faculty Researchers.

Junior faculty follow a research path replete with challenges as they strive to create knowledge in their area of interest while balancing new responsibilities. Unlike graduate school, where students focus inward on personal development, junior faculty must add responsibilities in ways that hold them accountable as members of a university. This special article deals with three themes of interest to new junior faulty launching research programs: personal development, collaboration and team development within university settings, and funding advice. Strategies in these areas provide guidance on navigating early careers and finding success in the academic setting.

Telemedicine Support Groups for Home Parenteral Nutrition Users.

Patients receiving home parenteral nutrition (HPN), a life-sustaining intravenous (IV) infusion that provides nourishment and hydration to patients with short gut or inflammatory bowel diseases, are often isolated and not in visual contact with peers or health providers. One completed clinical trial (Clinical Trials.gov NCT0190028) and 1 ongoing clinical trial (Clinical Trials.gov NCT02987569) are evaluating a mobile videoconferencing-delivered support group intervention for patients on HPN and their caregivers. This home-based telemedicine intervention uses encrypted tablet-based videoconferencing to connect multiple families in real time. The twice-daily IV regimen is challenging for patients who may experience infusion catheter-related bloodstream infections, difficulties with fatigue, loss of sleep, depressive disorders, and worry over the potential life-threatening side effects and the expenses of this therapy. Using secure telemedicine, the facilitated support group intervention aims to enhance HPN home care, daily functioning, and quality of life. The authors provide the rationale for the telemedicine approach with HPN users and caregivers. They provide "how-to" information about the content and process of the facilitated support group sessions via secure videoconferencing. They share lessons learned from the ongoing evaluation of the telemedicine approach.

Identification of Depressive Signs in Patients and Their Family Members During iPad-based Audiovisual Sessions.

Home parenteral nutrition requires a daily life-sustaining intravenous infusion over 12 hours. The daily intravenous infusion home care procedures are stringent, time-consuming tasks for patients and family caregivers who often experience depression. The purposes of this study were (1) to assess home parenteral nutrition patients and caregivers for depression and (2) to assess whether depressive signs can be seen during audiovisual discussion sessions using an Apple iPad Mini. In a clinical trial (N = 126), a subsample of 21 participants (16.7%) had depressive symptoms. Of those with depression, 13 participants were home parenteral nutrition patients and eight were family caregivers; ages ranged from 20 to 79 years (with 48.9 [standard deviation, 17.37] years); 76.2% were female. Individual assessments by the mental health nurse found factors related to depressive symptoms across all 21 participants. A different nurse observed participants for signs of depression when viewing the videotapes of the discussion sessions on audiovisual technology. Conclusions are that depression questionnaires, individual assessment, and observation using audiovisual technology can identify depressive symptoms. Considering the growing provision of healthcare at a distance, via technology, recommendations are to observe and assess for known signs and symptoms of depression during all audiovisual interactions.

Strategies to Build Authorship Competence Among PhD Students.

Publication in refereed journals is an important responsibility of PhD-prepared nurses. Specialized writing skills are crucial for effective professional publication. The capacity to develop and publish articles is best learned during doctoral education. This Western Journal of Nursing Research Editorial Board Special Article addresses multi-dimensional strategies to develop authorship competence among doctoral students. The article outlines structured PhD program experiences to provide the context for students to develop authorship capacity. The authors identify multi-faceted faculty endeavors and student activities that are essential to foster authorship competence. Students who embrace opportunities to acquire authorship qualifications will be well prepared for their post-graduation role as stewards of the nursing discipline.

A Clinical Trial of Translation of Evidence Based Interventions to Mobile Tablets and Illness Specific Internet Sites.

This article describes a method to translate an evidence based health care intervention to the mobile environment. This translation assisted patient participants to: avoid life threatening infections; monitor emotions and fatigue; keep involved in healthy activities. The mobile technology also decreased costs by reducing for example travel to visit health care providers. Testing of this translation method and its use by comparison groups of patients adds to the knowledge base for assessing technology for its impact on health outcome measures. The challenges and workflow of designing materials for the mobile format are described. Transitioning clinical trial verified interventions, previously provided in person to patients, onto tablet and internet platforms is an important process that must be evaluated. In this study, our evidence based guide's intravenous (IV) homeCare interventions (IVhomeCare) were delivered via Apple iPad mini™ tablet audiovisual instruction / discussion sessions and on a website. Each iPad audiovisual session (n = 41), included three to five families, a mental health specialist, and healthcare professionals. Patients and their family caregivers readily learned to use the wireless mobile tablets, and the IVhomeCare interventions, as described here, were successfully translated onto these mobile technology platforms. Using Likert scale responses on a questionnaire (1 = not helpful and 5 = very helpful) participants indicated that they gained problem solving skills for home care through iPad group discussion (M = 4.60, SD = 0.60). The firewall protected videoconferencing in real time with multiple healthcare professionals effectively allowed health history taking and visual inspection of the patient's IV insertion site for signs of infection. Supportive interactions with peer families on videoconferencing were documented during discussions. Discussion topics included low moods, fatigue, infection worry, how to maintain independence, and need for support from others with their same lifelong IV experiences. The visual family interactions, discussions with professionals, and the iPad internet links were highly rated. Mobile distance care delivery can result in saved time and money for both healthcare professionals and families.

Normalizing Rejection.

Getting turned down for grant funding or having a manuscript rejected is an uncomfortable but not unusual occurrence during the course of a nurse researcher's professional life. Rejection can evoke an emotional response akin to the grieving process that can slow or even undermine productivity. Only by "normalizing" rejection, that is, by accepting it as an integral part of the scientific process, can researchers more quickly overcome negative emotions and instead use rejection to refine and advance their scientific programs. This article provides practical advice for coming to emotional terms with rejection and delineates methods for working constructively to address reviewer comments.

Designing and Testing an End-of-Life Discussion Intervention for African American Patients With Heart Failure and Their Families.

There is an escalating prevalence of heart failure (HF) with high mortality. Compared with other races, African Americans face a higher incidence of HF at earlier age of onset, with more rapid progression, and with increased family care burden and greater care costs and disparity in health care services at the end of life (EOL). Concomitant out-of-pocket HF costs and care demands indicate the need for early discussion of palliative and EOL care needs. We therefore developed and pilot tested a culturally sensitive intervention specific to the needs of African American HF patients and their families at the EOL. Our pilot study findings encompass patient and caregiver perspectives and align with the state of EOL science. The ultimate long-term goal of this intervention strategy is to translate into practice the preferred, culturally sensitive, and most cost-efficient EOL care recommendations for HF patients and families.

mHealth Clinic Appointment PC Tablet: Implementation, Challenges and Solutions.

BACKGROUND: Patients requiring daily intravenous (IV) home parenteral nutrition (HPN) would benefit from in-home professional observation to improve self-care, to assess, detect and prevent serious complications. AIMS: The study aims are to assess the viability and utility of conducting mobile healthcare (mHealth) videoconference assessments with patients managing lifelong daily 12-hour IV nutrition infusions in their homes. The challenges and solutions to implementing mobile personal computer (PC) tablet based clinic appointments are described. METHODS: A wireless Apple iPad Mini™ mobile touch-screen tablet computer with 5 mega-pixel camera was loaned to patients. Each tablet had Polycom RealPresence software and a fourth generation (4G) mobile telecommunications data plan. These supported audio-visual mobile videoconferencing encrypted connections between health professionals in their offices and HPN patients and their family members in their homes. Patients' and professionals' evaluations of their mHealth clinic experiences are collected. RESULTS: Patients (mean age = 41.9, SD = 2.8 years) had been prescribed 12-hour home parenteral nutrition (HPN) infusions daily due short bowel disorders. Patients had been on HPN from 1 to 10 years (M=4, SD=3.6). Evaluation of clinic appointments revealed that 100% of the patients (n=45) and the professionals (n=6) indicated that they can clearly hear and easily see one another. The mHealth audio-visual interactions were highly rated by patients and family members. Professionals highly rated their ability to obtain a medical history and visual inspection of patients. Several challenges were identified and recommendations for resolutions are described. DISCUSSION: All patients and professionals highly rated the iPad mHealth clinic appointments for convenience and ease of communicating between homes and offices. An important challenge for all mHealth visits is the clinical professional's ability to make clinically accurate judgments about what they observed and heard from the patients. Following our solutions for obtaining clear visuals with the iPad can improve ability to make clinical assessments.

Caregiver coaching program effect: Reducing heart failure patient rehospitalizations and improving caregiver outcomes among African Americans.

OBJECTIVES: (1) Test whether FamHFcare intervention could reduce patients' heart failure (HF)-related rehospitalizations and improve family caregiver outcomes; (2) calculate effect size on caregiver outcomes; and (3) evaluate the FamHFcare. BACKGROUND: Few interventions target family caregivers for HF home care. METHODS: This study was a mixed method design with stratification and random assignment of 20 African American HF patient/caregiver dyads. Descriptive, univariate parametric/non-parametric, and post-hoc analyses were used. RESULTS: At 6 months, compared to standard care, the intervention group had significantly fewer HF rehospitalizations (M-W z = -1.8, p = 0.03), while caregiver confidence (M-W z = 2.8, p = 0.003) and social support scores (M-W z = 2.4, p = 0.01) were significantly higher, and caregiver depression (M-W z = -2.4, p = 0.01) were significantly lower. Caregivers rated the FamHFcare as helpful (M = 46.8 ± 4.1). CONCLUSIONS: The FamHFcare intervention was associated with fewer HF patient rehospitalizations and improved caregiver outcomes.