Marilyn Werkowitch

Home parenteral nutrition: does affiliation with a national support and educational organization improve patient outcomes?

BACKGROUND For patients receiving home parenteral nutrition (HPN), catheter-related bloodstream infection (CRBSI) and reactive depression may significantly impact quality-of-life. This study evaluated the influence of patient affiliation with a national organization promoting HPN education and peer support on these outcome variables. METHODS Using a case-control design, we compared 2 groups of affiliated patients with nonaffiliated controls, who were matched for diagnosis, HPN duration, sex, and age. Group 1 data were obtained from patients in large HPN medical practice programs. Group 2 data were obtained from patients in small medical practices with a small number of HPN patients. All participants were evaluated by structured interviews every 6 months over 18 months. RESULTS In both data collection groups, affiliated patients (A) had significantly higher (mean +/- SD) quality-of-life scores compared with nonaffiliated patients (NA): (Gr 1: A, 19.8 +/- 4.7 versus NA, 17.6 +/- 5.6, p = .05; Gr 2: A, 20.4 +/- 5.2 versus NA, 17.3 +/- 4.8, p = .05). Affiliated patients also had lower depression scores (Gr 1: A, 10.9 +/- 10.4 versus NA, 20.4 +/- 13.6, p = .01; Gr 2: A, 12.5 +/- 9.6 versus NA, 18.5 +/- 10.8, p = .03) and a lower incidence of catheter-related infections (Gr 1: A, 0.10 +/- 0.3 versus NA, 0.60 +/- 0.55, p = .01; Gr 2: A, 0.27 +/- 0.55 versus NA, 0.71 +/- 0.64, p = .02) than nonaffiliated patients. CONCLUSIONS Affiliation with an organization that provides ongoing HPN education and peer support was associated with significantly better HPN outcomes. Alternative explanations are discussed in relation to limitations of the case-control design.

Part I: Heart failure home management: Patients, multidisciplinary health care professionals and family caregivers' perspectives

Using qualitative research study methods, this study identified the key factors that patients, health care professionals, and family caregivers perceived as most helpful in effectively managing heart failure (HF) at home. These key factors were the following: (a) family caregiver involvement, (b) continuous learning about HF, (c) acceptance of and coping with HF diagnosis, (d) learning from other patients with HF, (e) guidance for daily problem solving, (f) lifestyle changes, and (g) financial resources.

Part 2: Enhancing heart failure home management: integrated evidence for a new family caregiver educational plan

This article describes how the qualitative data integrated from patients, health care professionals, and family caregivers have been developed into a new heart failure (HF) educational plan for family caregivers to manage the complexities of HF self-management at home. In addition, the educational plan describes potential strategies and teaching materials based on these integrated data.

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.

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.

End-of-life preferences and presence of advance directives among ethnic populations with severe chronic cardiovascular illnesses:

Background: Little end-of-life planning occurs among ethnic minorities with severe cardiovascular illnesses. Aim: The purpose of this study was to explore end-of-life preferences and determine the presence of signed end-of-life advanced directives. Methods: Thirty ethnic minority patients volunteered for an open-ended question interview. Content analysis was used to summarize responses into themes using patients’ terms. Findings: Five themes emerged: (a) importance of family involvement in care at end of life; (b) being pain free (or pain controlled) at the end of life; (c) having a comfortable environment for death was desired; (d) wanting no procedures for prolonging life; and (e) desiring a relationship with a professional for end-of-life decision making (reported as inconsistently available). New unique findings were related to concerns about multiple and repeatedly rotating professionals not allowing these ethnic patients end-of-life discussions and fear that signing forms would lead to deportation. Overall, 50% of the participants had signed standard advanced directives as requested upon entry to the home care agency. Conclusions: Most of these very ill patients did readily discuss these sensitive issues with the research nurse. Cardiovascular training in end-of-life care should include sensitivity to ethnic and cultural preferences and competencies in interviewing on sensitive topics.

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.

A Clinical Trial of Translation of Evidence Based Interventions to MobileTablets 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 guides 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 patients 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.

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.