[The role of the specialist nurse in parenteral nutrition : An observational study of complications with home parenteral nutrition in adult cancer patients] / Étude observationnelle prospective des complications chez l'adulte atteint de cancer et bénéficiant d'une nutrition parentérale à domicile.

Background : In France, home parenteral nutrition (HPN) is managed by two parallel healthcare systems : in approved specialist centers (HPN > 12 weeks), and outside of these approved specialist centers (HPN<12 weeks). Objective : To prospectively evaluate infectious and vascular complications in adult cancer patients undergoing HPN administered via a central venous line, outside of approved specialist HPN centers. Methods : Our observational prospective study included adult patients with cancer, hospitalized for 48 hours or more, and under HPN. They had a WHO performance status of ≤ 2 and had had a nutritional consultation before discharge. Results : 25 patients were included in the study, with a median age of 63 years [19­74]. Weight loss of ≥ 5% was reported in 79% of patients. The Ingesta score was < 7 in 96% of cases. 87% of patients presented chill or body temperature variation episodes, with a median of 2 episodes [1­6] per patient. The median delay between end of hospitalization and the first chill episode was 11 days [1­85]. A vascular complication (obstruction without thrombosis) was reported in one patient. Discussion : This high number of infectious episodes requires improvement of patient care when it comes to strictly adhering to the recommendations. Getting the approved specialist HPN centers to work together and share care protocols could be the first important step.

Empatía, soledad, desgaste y satisfacción personal en Enfermeras de cuidados paliativos y atención domiciliaria de Chile / Empathy, loneliness, burnout, and life satisfaction in Chilean nurses of palliative care and homecare services

Introducción: La empatía ha sido descrita como una competencia esencial de los profesionales sanitarios que trabajan en servicios de cuidados paliativos y atención domiciliaria. En estos servicios, normalmente acompañados por un alto riesgo de desgaste físico y emocional, la empatía puede jugar un importante papel en la mejora del bienestar ocupacional. El objetivo de este estudio fue confirmar el papel de la empatía en la prevención de la soledad y el desgaste, y en la promoción de la satisfacción vital. Métodos: En 2016, un estudio observacional fue realizado en Chile con profesionales de enfermería que estaban trabajando en cuidados paliativos y en servicios de atención domiciliaria. La empatía con los pacientes, la soledad, la satisfacción vital y el desgaste fueron medidos utilizando escalas psicométricas. Se aplicaron análisis de correlación para confirmar las relaciones entre los elementos medidos. Resultados: En una muestra de 64 participantes, se confirmaron correlaciones positivas entre la empatía y la satisfacción vital (P = 0,40; p = 0,003), y entre la empatía y la experiencia profesional (P = 0,29; p = 0,04). Por otra parte, se confirmaron correlaciones inversas entre la empatía y el desgaste (P = -0,38; p = 0,01), y entre la empatía y la soledad (P = -0,41; p = 0,004). Conclusiones: Estos hallazgos confirman el importante papel que la empatía juega en la prevención de la soledad y el desgaste, y en la promoción de la satisfacción vital. La evidencia encontrada sugiere que las habilidades empáticas se pueden mejorar por la experiencia profesional (AU)

Introduction: Empathy has been described as an essential competence of healthcare professionals who are working in palliative care and homecare services. In these services, usually accompanied by a high risk of physical and emotional burnout, empathy can play an important role in the improvement of occupational wellbeing. The aim of this study was to confirm the role of empathy in the prevention of loneliness and burn out, and in the promotion of life satisfaction. Methods: In 2016, an observational study was carried out in Chile with professional nurses who were working in palliative care and homecare services. Empathy with the patients, loneliness, life satisfaction, and burnout were measured using psychometric scales. Correlation analyses were applied to confirm relationships among the elements measured. Results: In a sample of 64 participants, positive correlations were confirmed between empathy and life satisfaction (P = 0.40; p = 0.003), and between empathy and professional experience (P = 0.29; p = 0.04). On the other hand, inverse correlations were confirmed between empathy and burnout (P = -0.38; p = 0. 01), and between empathy and loneliness (P = -0.41; p = 0.004). Conclusions: These findings confirm the important role that empathy plays in the prevention of loneliness and burnout, and in the promotion of life satisfaction. Evidence found suggests that empathetic abilities can be improved by the professional experience (AU)

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.

[Not Available]. / Songenent-wohnung 2.0: Was Sonden-dependente Kinder brauchen.

A dramatic increase of home enteral nutrition in pediatric population has been reported over the last decade. Inpatient units discharge more and more children with nasogastric and G- tubes. And for certain percentage the feeding and eating behavior does not improve with time. But longer tube dependency frequently results in general food aversion and refusal. The assessment and treatment, we will line out in this paper, have shown high efficiency for children with feeding tube dependency. To improve the situation of children with feeding tube dependency more treatment facilities are needed. Furthermore early prevention program and feeding tube management should be established to prevent feeding tube dependency.

Psychosocial impact of intestinal failure: a familial perspective.

Intestinal failure is a complicated long-term condition that can have profound physical and psychosocial consequences for a patient's life. Hospitalisation can be long, with many distressing and unpleasant medical procedures being endured. Patients often have to deal with large volumes of unmanageable faecal fluid from stomas or fistulae and usually require home parenteral nutrition (HPN) for the remainder of their life. The literature focuses on how patients often have to tolerate long periods of suffering, which can be the basis for significant emotional anguish. It also addresses how the condition can contribute to myriad psychosocial difficulties, which can have devastating effects on their body image and quality of life. However, there is a lack of information regarding the effects of this condition on the family, who not only have to provide ongoing support for the patient, but also have to attempt to function normally while coping with their own fears and emotions. This article reviews the experiences of two patients, father and daughter, living with intestinal failure; it discusses their experiences and reveals how they cope with the physical aspects. It also addresses how the condition can effect psychosocial disturbances, not only for them but for those living closely with them. The article addresses ways that nurses could develop their relationship with the patient, enabling them to recognise and act early on signs of emotional malady.

The Impact of Long-Term Home Parenteral Nutrition on the Patient and the Family: Achieving Normalcy in Life.

Home parenteral nutrition (HPN) is a technologically complex, life-sustaining therapy for individuals who have intestinal failure. Accepting an invasive lifelong therapy like HPN is challenging for patients and their family caregivers. There is a desire to maintain a sense of normalcy in life and to carry on as usual. Using qualitative methodology, the authors explored and described the lived experience of HPN-dependent adults and identified normalization as a repeating and strong theme. Understanding how individuals adapt, cope, or experience this complex therapy provides insight into how they manage their lives in as normal a way as possible. By understanding the perspective of normalization, home infusion nurses and nutrition support clinicians can embrace caregiving strategies and tools consistent with the changing social environment in which the HPN experience is lived.

Twenty five years of outsourcing home parenteral nutrition: experience of the La Paz University Hospital, Madrid / Veinticinco años de outsourcing de la nutrición parenteral domiciliaria: experiencia del Hospital Universitario la Paz de Madrid

Background: Most of adult patients with home parenteral nutrition (HPN) assisted by the Clinical Nutrition and Diethetics Unit at Hospital Universitario La Paz have been receiving for more than 20 years their nutrition formula through a catering system that processes and delivers food directly to patients’ homes. Objective: To assess the clinical characteristics, the quality of life and the degree of satisfaction with the support received from patients with home parenteral nutrition assisted by the catering system Nutriservice for their nutrition formulas. Methods and materials: We collected the characteristics from patients who used Nutriservice home parenteral nutrition formulas, from 1992 to present. Patients on an active treatment completed a quality of life questionnaire about the catering system and the support they received from our Unit. Results: 78 patients were included in the sample, 57.7% men, mean age 53.1±14.3. Cancer was the most frequent main condition, as much for late stages (34%) as for active treatment (34%). The main reason for HPN was bowel obstruction (46%). The nutritional support lasted for a median of 96 days (1-5334). The most frequent complications were infections associated with the catheter (72%). The results were analysed following the main underlying condition for patients classification: late stage cancer, active treatment cancer and better prognostic and non-oncologic pathology. Patients in active treatment considered their quality of life affected and the positively assessed the service from Nutriservice and the support from the Nutrition Unit. Conclusions: Our experience shows that cancer patients are those who most frequently receive home parenteral nutrition, and it is very frequent at late stages. The severity of the main condition goes together with the complexity of HPN. Catering systems could well be an efficient alternative to improve the quality of life in some of these patients (AU)

Introducción: La mayoría de los pacientes adultos con nutrición parenteral domiciliaria (NPD) que dependen de la Unidad de Nutrición Clínica y Dietética del Hospital Universitario La Paz, reciben desde hace más de 20 años la fórmula de nutrición a través de un sistema de catering que elabora y distribuye directamente al domicilio del paciente. Objetivo: Evaluar las características clínicas, calidad de vida y grado de satisfacción con la atención recibida de los pacientes con nutrición parenteral domiciliaria que recibieron las fórmulas de nutrición mediante el sistema de catering: Nutriservice. Material y métodos: Se recogen retrospectivamente las características de los pacientes que utilizaron fórmulas de nutrición parenteral en su domicilio a través de Nutriservice, desde el año 1992 hasta la actualidad. Los pacientes en tratamiento activo realizaron un cuestionario de calidad de vida y encuesta de satisfacción sobre el sistema de catering y la atención prestada por nuestra Unidad. Resultados: Se registraron 78 pacientes, el 57,7% eran hombres y la edad media 53,1±14,3 años. La patología de base más frecuente fue el cáncer, tanto en estadios avanzados (34%) como en tratamiento activo (34%). El motivo principal de indicación fue la obstrucción intestinal (46%).La duración del soporte nutricional tuvo una mediana de 96 días (1-5334). Las complicaciones más frecuentes fueron las infecciones relacionadas con el catéter (72%). Se analizaron los resultados, clasificando a los pacientes según la enfermedad de base: cáncer en estadio avanzado, cáncer en tratamiento activo y mejor pronóstico y patología no oncológica. Los pacientes en tratamiento activo consideraron afectada su calidad de vida y valoraron positivamente el servicio ofrecido por Nutriservice y la atención recibida de la Unidad de Nutrición. Conclusión: En nuestra experiencia, los pacientes oncológicos son los que con mayor frecuencia tienen nutrición parenteral domiciliaria, siendo muy frecuente su indicación en estadios avanzados de la enfermedad. A la gravedad de la patología de base se une la complejidad de la NPD. Los sistemas de catering podrían ser una alternativa eficaz para mejorar la calidad de vida en algunos de estos pacientes (AU)

Identifying patient-centered quality indicators for the care of adult home parenteral nutrition (HPN) patients.

BACKGROUND: Previous qualitative research, aimed at eliciting the experiences and views of home parenteral nutrition (HPN) patients in daily life, revealed little information on HPN care. However, to perform patient-centered care, it is important to understand what "quality of care" means for adult HPN patients. Therefore, the aim of this study was to identify quality indicators through patients' perspectives. MATERIALS AND METHODS: In-depth, face-to-face, semistructured interviews were conducted between June and November 2011 with adult patients who recently started HPN. Patients were selected by purposive sampling. Interviews were audio recorded, transcribed verbatim, and analyzed using a framework approach. Nvivo 9.0 software was used for managing transcripts. RESULTS: Twelve adult patients (7F/5M) were interviewed. At the time of the interview, median HPN experience was 59 days. Two structure, 31 process, and 9 outcome indicators were identified. The majority of process indicators are related to the home nurse, indicating the important role of these healthcare professionals in HPN care. In addition, all interviewees reported communication as an essential aspect of the complex care pathway. The identified outcome indicators are comparable with the indicators that were previously developed by an expert panel. For example, improvement in quality of life during HPN treatment and incidence of catheter-related infections were identified by both groups. CONCLUSION: Interviews with HPN patients revealed an interesting set of indicators that can be used to perform, evaluate, or improve current HPN care and are a starting point for a more patient-centered approach.

Cuidados al paciente con gastrostomía radiológica percutánea / Percutaneous radiological gastrostomy patient care

En España, el número de pacientes que precisa de soporte nutricional artificial va en aumento y en el caso de la nutrición enteral domiciliaria existe una clara tendencia ascendente en el tiempo, siendo la gastrostomía la técnica que se implanta para solventar el problema de la alimentación artificial a largo plazo. El Registro de nutrición artificial domiciliaria y ambulatoria (NADYA), dependiente de la Sociedad Española de Nutrición Parenteral y Enteral (SENPE), indica que en el año 2009 se incrementó en un 5,11% el número de intervenciones de nutrición enteral domiciliaria, habiendo aumentado el número de pacientes con patologías neurológicas por encima de las patologías oncológicas, y de ambas sobre las demás. De ellos, el 21,19% se correspondían a nutrición enteral (NE) por sonda de gastrostomía. El profesional enfermero es parte implicada en todo el proceso de atención del paciente y su papel tiene cada vez más importancia, siendo necesaria una buena preparación a fin de contar con el conocimiento suficiente para afrontar dicho cuidado a través de una atención de calidad. Este trabajo se ha realizado con el fin de contribuir a incrementar los conocimientos en este campo y aplicar un mejor cuidado enfermero. Para ello se ha descrito brevemente la evolución histórica, las indicaciones y las diferentes técnicas de realización de una gastrostomía, centrándose en la gastrostomía radiológica percutánea. Se presenta la experiencia del Complejo Hospitalario de Navarra, el protocolo de actuación rápida que se implantó en el servicio de urgencias de dicho centro, los cuidados enfermeros aplicados y ciertos consejos de vigilancia fruto de la reflexión y la praxis enfermera dentro del Servicio de Radiología Vascular Intervencionista (AU)

In Spain, the number of patients requiring artificial nutritional supportis on the rise, and in the case of home enteral nutrition, a clear upward trend is taking place over the course of time, gastrostomy being the technique implemented for solving the problem of long-term artificial feeding . The Spanish Registry of Home and Ambulatory Artificial Nutrition(NADYA), operating under the Spanish Society for Parenteral and Enteral Nutrition (SENPE), indicates that the number of home enteral nutrition interventions rose by 5.11% in 2009, the number of patients with neurological disorders above and beyond oncological disorders (..) (AU)

Development of quality of care interventions for adult patients on home parenteral nutrition (HPN) with a benign underlying disease using a two-round Delphi approach.

BACKGROUND & AIMS: HPN patients with benign diseases deserve professional care as they have to deal with complex techniques and risk potentially dangerous complications. The aim was to highlight main outcome quality indicators and to develop a set of key interventions to direct multidisciplinary teams in providing qualitative care. METHODS: A two-round Delphi approach was used to build consensus on the most important outcome indicators and on 59 interventions identified in existing guidelines on HPN. Comments and interventions newly identified in the first round were co-evaluated in the second round. RESULTS: 29 experts from 9 countries completed the two-round Delphi approach. The outcome indicators rated as the most important are 1) incidence of catheter-related infections, 2) incidence of readmission and quality of life (shared second place) and 3) incidence of dehydration. Sixty eight of a total of 89 interventions were considered as important for the quality of care, of which 46 are based on published guidelines and 22 were newly suggested by the Delphi panel. CONCLUSIONS: Using a two-round Delphi approach, consensus was reached for the majority of interventions concerning HPN patients with benign diseases. This set of 68 interventions could be of use as a starting point for quality-improvement programs.

A case study approach to Hyperemesis Gravidarum: home care implications.

Clients with Hyperemesis Gravidarum (HG) have nausea and/or vomiting that prevents adequate intake of food and fluids. A client could have weight loss, dehydration, nutritional deficiencies, metabolic deficiencies, difficulty with daily activities, psychosocial stress and depression. Managing a client at home with HG is very complex and requires a multidisciplinary approach.

Delivery of high-tech home care by hospital-based nursing units in Quebec: clinical and technical challenges.

BACKGROUND: The role that hospital-based nurses should play in the delivery of high-tech home care, and how they should be supported in that role, are topics that remain understudied. Our research objective was to document how hospital-based nursing teams perceive and deal with the clinical and technical challenges associated with the provision of high-tech home care. METHODS: Four home care interventions were selected: antibiotic intravenous therapy, parenteral nutrition, peritoneal dialysis and oxygen therapy. A self-administered survey was sent to all hospital-based units providing these interventions in the province of Quebec, Canada (n = 154; response rate: 70.8%). We used descriptive statistical analyses to derive mean values for scores on either a five- or a six-level Likert scale. RESULTS: Despite variation across the four interventions, our results indicate that while nursing teams believe these interventions increase patients' autonomy, they also recognize that they generate anxiety and impose constraints on patients' lives. Nurses must increase efforts to deal with both clinical and technical challenges and help patients overcome the barriers to appropriate use of home care technologies. CONCLUSIONS: While nursing teams generally perceive high-tech home care as beneficial, they still experience significant technical and clinical challenges. Some of these challenges could be addressed by strengthening professional training initiatives, while others require broader home care policy interventions.

Examination of factors that lead to complications for new home parenteral nutrition patients.

Home parenteral nutrition carries a risk of infectious, metabolic, and mechanical complications that cause significant morbidity and mortality. This study investigated the incidence and the causative factors of these complications that occur within the first 90 days after discharge from the hospital to home. Data were prospectively collected and analyzed for 97 adult patients. A complication developed in one third of the patients, and the majority required rehospitalization. Infectious complications were the most prevalent, followed by mechanical and then metabolic complications. The authors describe their methods of collecting data in a quantifiable manner with the ultimate goal of improving patient outcomes.

Review of homecare packages for paediatric HPN patients.

This study explored the existing nursing homecare packages required by children who receive home parenteral nutrition and their families, in order to evaluate the effectiveness of the support required. The study forms the basis for ongoing financial discussions with PCTs to ensure high-quality nursing services are available and meet the needs of families. Families' views about homecare packages developed in response to the needs of care for parenterally fed children were explored. Findings indicated three emergent themes that families face: physical, psychological and burden of care. Homecare packages developed in response to family needs were highlighted as being essential. A 24-hour on-call service with expert paediatric nursing staff was a key factor for families to feel secure. It was felt that the individualized homecare packages supported the vulnerable patient group. Families felt that nursing their child at home was a major advantage in the homecare package, but improved delivery of social and medical care was necessary to meet individual child and family needs.

Management of a high-output stoma in the community: case study.

Nursing care of patients with high-output stomas in the community can be challenging. Large quantities of liquid effluent make containment and skin care high priorities. These issues can in some cases be further complicated by the need for parenteral nutrition (PN). Issues related to high output stomas will be briefly discussed and then a case study will show how one team of community nurses assisted a patient with a jejunostomy.

The use of technology at home: what patient manuals say and sell vs. what patients face and fear.

Over the past 15 years, the use of specialised medical equipment by patients at home has increased in most industrialised countries. Adopting a conceptual framework that brings together two research perspectives, i.e. the sociology of technology and the sociology of illness, this paper empirically examines why and how patients use health technology at home and in the broader social world. Our study compares and contrasts the use of four interventions: antibiotic intravenous therapy, parenteral nutrition, peritoneal dialysis and oxygen therapy. We conducted interviews with patients (n = 16) and caregivers (n = 6), and made direct observations of home visits by nurses (n = 16). The content and structure of patient manuals distributed by major manufacturers and hospitals were analysed (n = 26). The aim of our study was to determine how technology was supposed to be used versus how it was actually used. This study shows that patients are deeply ambivalent about the benefits and drawbacks of technology, and that these advantages and disadvantages are shaped by the various places in which the technology is used. While technology can be pivotal in making patients autonomous and able to participate in the social world, it also imposes heavy restrictions that are intimately interwoven with the nature of the particular disease and with the patient's personal life trajectory.