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.

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.

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.

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.

Costs of multidisciplinary parenteral nutrition care provided at a distance via mobile tablets.

BACKGROUND: Determining the costs of healthcare delivery is a key step for providing efficient nutrition-based care. This analysis tabulates the costs of delivering home parenteral nutrition (HPN) interventions and clinical assessments through encrypted mobile technologies to increase patients' access to healthcare providers, reduce their travel expenses, and allow early detection of infection and other complications. METHODS: A traditional cost-accounting method was used to tabulate all expenses related to mobile distance HPN clinic appointments, including (1) personnel time of multidisciplinary healthcare professionals, (2) supply of HPN intervention materials, and (3) equipment, connection, and delivery expenses. RESULTS: A total of 20 mobile distance clinic appointments were conducted for an average of 56 minutes each with 45 patients who required HPN infusion care. The initial setup costs included mobile tablet devices, 4G data plans, and personnel's time as well as intervention materials. The initial costs were on average $916.64 per patient, while the follow-up clinic appointments required $361.63 a month, with these costs continuing to decline as the equipment was used by multiple patients more frequently over time. Patients reported high levels of satisfaction with cost savings in travel expenses and rated the quality of care comparable to traditional in-person examinations. CONCLUSION: This study provides important aspects of the initial cost tabulation for visual assessment for HPN appointments. These findings will be used to generate a decision algorithm for scheduling mobile distance clinic appointments intermittent with in-person visits to determine how to lower costs of nutrition assessments. To maximize the cost benefits, clinical trials must continue to collect clinical outcomes.

Patients' annual income adequacy, insurance premiums and out-of-pocket expenses related to heart failure care.

OBJECTIVES: To (1) identify the amount patients spend for insurance premiums, co-payments, deductibles, and other out-of-pocket costs related to HF and chronic health care services and estimate their annual non-reimbursed and out-of-pocket costs; and (2) identify patients' concerns about nonreimbursed and out-of-pocket expenses. BACKGROUND: HF is one of the most expensive illnesses for our society with multiple health services and financial burdens for families. METHODS: Mixed methods with quantitative questionnaires and qualitative interviews. RESULTS: Patients (N = 149) reported annual averages for non-reimbursed health services co-payments and out-of-pocket costs ranging from $3913 to $5829 depending on insurance coverage. Thirty one patients (21%) reported inadequate health coverage related to their non-reimbursed costs. CONCLUSIONS: Non-reimbursed costs related to HF care are substantial and vary depending on their insurance, health services use, and out-of-pocket costs. Patient referral to social services to assist with expenses could provide some relief from the burden of high HF-related costs.

Creating patient and family education web sites: assuring accessibility and usability standards.

This article gives details about the methods and processes used to ensure that usability and accessibility were achieved during development of the Home Parenteral Nutrition Family Caregivers Web site, an evidence-based health education Web site for the family members and caregivers of chronically ill patients. This article addresses comprehensive definitions of usability and accessibility and illustrates Web site development according to Section 508 standards and the national Health and Human Services' Research-Based Web Design and Usability Guidelines requirements.

Creating patient and family education web sites: design and content of the home parenteral nutrition family caregivers web site.

When managing chronic illnesses, caregivers repeatedly seek online information about providing complex, long-term care but often neglect to find information about how to care for themselves. Poor health among caregivers is not only detrimental to their own well-being but may also result in harm to those for whom they care. For this reason, caregivers need access to information and activities about caring for themselves in addition to the information about managing home care they are already likely to seek. The HPN Family Caregivers Web site was developed to guide caregivers through the process of caring for themselves by establishing a caregiving routine, self-monitoring their mental and physical health, and practicing good sleep hygiene, while also managing the complexities of home care. While Web site information, activities, and algorithms for managing chronic illnesses need to be specific to each population, the content guiding caregivers to care for their own health is universal.

Complex home care: Part 2- family annual income, insurance premium, and out-of-pocket expenses.

Annual costs paid by families for intravenous infusion of home parenteral nutrition (HPN) health insurance premiums, deductibles, co-payments for health services, and the wide range of out-of-pocket home health care expenses are significant. The costs of managing complex chronic care at home cannot be completely understood until all out-of-pocket costs have been defined, described, and tabulated. Non-reimbursed and out-of-pocket costs paid by families over years for complex chronic care negatively impact the financial stability of families. National health care reform must take into account the long-term financial burdens of families caring for those with complex home care. Any changes that may increase the out-of-pocket costs or health insurance costs to these families can also have a negative long-term impact on society when greater numbers of patients declare bankruptcy or qualify for medical disability.

Complex home care: Part I--Utilization and costs to families for health care services each year.

As many as 120 persons per million people in the United States are dependent on the lifelong, complex, technology-based care of home parenteral nutrition (HPN) infusions. However, data for costs paid by families for HPN-related health care services and for non-reimbursed expenditures are rarely tabulated and most often underestimated. The goals of this study were to describe health care services used by families to manage HPN, report the frequency of each service used annually, and estimate the average annual non-reimbursed costs to families for these health services. The numerous and varied types of services reported and the time required to coordinate and access HPN services illustrates the challenges faced by patients and their family caregivers. The lack of a coordinated and efficient system for delivering complex chronic care results in poorer outcomes for HPN patients and their families on-reimbursed costs and the extensive amount of time required to coordinate multi-professional services negatively impacts the clinical outcomes and quality of life of complex chronic home care.

Complex home care: part III--economic impact on family caregiver quality of life and patients' clinical outcomes.

Family caregivers perform a significant role in the care of patients with chronic illnesses and prescribed life-long complex home care treatments. Both quantitative and qualitative data from this study suggest the mental health burdens and financial costs of home parenteral nutrition (HPN) caregiving are extensive. In this study, the variability in HPN out-of-pocket expenses and the uncertainty of incurring such extensive costs created additional financial worries within already stressed families. Based on these data, interventions to improve caregivers' sleepiness, depression, and physical health could be hypothesized to improve both patients' and caregivers' quality of life and reduce the frequency of patients' catheter-related infections. These specific nursing interventions also could improve caregiver health and subsequently reduce the costs of caregivers' health care.