Carol E. Smith

Quality of Life in Long-Term Total Parenteral Nutrition Patients and Their Family Caregivers:

The purpose of this study was to identify individual and family variables associated with patient and caregiver quality of life. Perceived quality of life has been associated with improved outcomes and compliance. Methods included telephone interviews of 178 families, randomly selected from academic, hospital, and infusion agencies across the United States, with 116 follow-up questionnaires returned. Patients had varied bowel disorders requiring total parenteral nutrition for an average of 4.6 years. Patients were an average of 52.0 years old; caregivers averaged 52.5 years of age. Coded interview data indicated that caregivers assist patients daily (for a mean of 4.2 hours) and provide emotional support. Problems such as loss of friends, loss of employment, and depression were reported in two thirds of the families. Overall low quality of life was associated with length of time on total parenteral nutrition, fewer family coping skills, and inability to get along on income, whereas higher quality of life was associated with higher self-esteem and quality in the relationship. Preparing families for potential social problems or situations related to depression while also enhancing financial assistance, self-esteem, quality in the relationship, and coping skills may increase both patient and caregiver quality of life.

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.

Diarrhea Associated with Tube Feeding In Mechanically Ventilated Critically Ill Patients

This study was undertaken to determine the incidence and duration of diarrhea associated with tube feeding in critically ill adult patients who require mechanical ventilation. Of the 73 subjects studied, 63% had diarrhea associated with tube feeding. This incidence is higher than that reported from other studies of critically ill patients who were not mechanically ventilated. Multiple logistic regression analysis revealed that three variables (higher rates of infusion, greater tube-feeding osmolality, and change of tube-feeding product) were statistically significant predictors of diarrhea incidence. Antibiotic use and serum albumin levels were not predictors. In a stepwise multiple regression analysis, the duration of diarrhea was predicted by frequency of diarrhea, within the first 5 days of tube-feeding onset, tube-feeding product osmolality, and rate of tube-feeding infusion. Serum albumin levels and frequency of diarrhea beyond 6 days of tube-feeding onset did not predict duration of diarrhea. Higher osmolality and infusion rates of tube-feeding products did contribute to prediction of both incidence and duration of diarrhea.

Technology dependence in home care: impact on patients and their family caregivers.

BACKGROUND The purpose of this review is to explore how home technology care affects patients, family caregivers, and quality of life (QOL). METHODS A literature search was conducted to identify studies of home parenteral nutrition (HPN) and other technology prescribed home care. RESULTS Technology dependence influences health-related QOL. Patients and their family caregivers must balance the positive aspects of being in the home environment with the challenges of administering complex therapies at home. Patients and caregivers need additional support to reduce the physical, emotional, social, and financial burdens they experience. CONCLUSIONS More research is needed to address effective interventions to reduce patient and caregiver burdens and to improve outcomes for technology-dependent individuals. A greater level of preparedness for managing home technology and technology-related problems may improve quality of life.

Clinical, social, and economic impacts of home parenteral nutrition dependence in short bowel syndrome.

Home parenteral nutrition (HPN) provides nourishment and hydration to patients with short bowel syndrome and intestinal failure and is thus a life-sustaining therapy for these patients. However, measures of quality of life (QOL) are lower among the HPN-dependent population than among patients with other intestinal diseases who do not require HPN. Multiple factors contribute to lower QOL in HPN-dependent patients, including fears surrounding the increased risk of HPN-associated adverse events, such as catheter-related complications, parenteral nutrition-associated liver disease, and metabolic bone disease. In addition, HPN-dependent patients report impaired sleep and daytime fatigue because of pump noises, equipment alarms, and nocturia. Psychosocial burdens on families of HPN-dependent patients include decreased social activities, disrupted family relationships and friendships, and depression. These families also face imposing financial constraints, including decreased employment and large out-of-pocket expenses for insurance premiums and nonreimbursed copayments, medications, and supplies. Furthermore, HPN technology and HPN-related complications and sequelae contribute to the rapid overall increase in the costs of healthcare systems. Additionally, family caregivers provide unpaid healthcare services for patients who require HPN, often to the detriment of their own physical and mental well-being. Nonetheless, patients dependent on HPN and their caregivers often demonstrate considerable resilience and are frequently able to normalize their response to illness and disability. Interventions that may improve QOL among HPN-dependent patients and caregivers include patient education, affiliation with support groups, treatment of concomitant symptoms, and pharmacotherapies that decrease HPN requirements.

The Meaning of Food and Eating among Home Parenteral Nutrition–Dependent Adults with Intestinal Failure: A Qualitative Inquiry

Using content and interpretative phenomenological analysis, we explored the meaning of food and eating from the perspective of adults receiving home parenteral nutrition (PN). The aim of this research was to obtain a deeper understanding of how issues related to food and eating influence quality of life (QOL). Semistructured telephone interviews were conducted between May 2006 and January 2007 with 24 adults with intestinal failure and home PN dependency. The analysis revealed themes relevant to eating behaviors, hunger and thirst, strategies for dining in restaurants, and a perception of wasting money because of malabsorbed food. Three patterns of eating emerged: eating for survival, eating for health benefits, and eating for socialization. A proposed model illustrates how these eating patterns are linked to QOL. Being able to eat and enjoy food is an important ingredient for good self-reported QOL. Measurements of QOL for this population may be enhanced with inclusion of a food and eating domain. The social and emotional context of food and mealtimes is an important component to address in the nutrition care plan for PN-dependent adults.

Testing Videotape Education for Heart Failure

This pilot study tested a videotape intervention designed to improve patient selfmanagement of heart failure (HF). Content of the video series (produced professionally under a federal grant) is based on national, scientifically validated guidelines for HF home management. Outcomes tested were HF knowledge, symptom reporting, and functional status. Participants were 10 newly diagnosed HF patients (mean age 67). After viewing the tapes, data indicated participants had a clinically relevant improvement in HF knowledge, and improved or maintained HF health status. None were rehospitalized during the 60-day follow-up period. One patient contacted his/her physician to report weight gain, as prompted by the videotapes. The cost data indicated that patients paid

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

177 out of pocket monthly for medications and all were low income. These results indicate the need for further testing of the videotape as a potentially cost-effective method of teaching aboutHFself-management and daily home self-monitoring.

Time Management Strategies for Research Productivity

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.

Multidisciplinary Group Clinic Appointments: The Self-Management and Care of Heart Failure (SMAC-HF) Trial

Researchers function in a complex environment and carry multiple role responsibilities. This environment is prone to various distractions that can derail productivity and decrease efficiency. Effective time management allows researchers to maintain focus on their work, contributing to research productivity. Thus, improving time management skills is essential to developing and sustaining a successful program of research. This article presents time management strategies addressing behaviors surrounding time assessment, planning, and monitoring. Herein, the Western Journal of Nursing Research editorial board recommends strategies to enhance time management, including setting realistic goals, prioritizing, and optimizing planning. Involving a team, problem-solving barriers, and early management of potential distractions can facilitate maintaining focus on a research program. Continually evaluating the effectiveness of time management strategies allows researchers to identify areas of improvement and recognize progress.