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1.
Eur J Cancer Care (Engl) ; 28(6): e13168, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31571296

RESUMEN

OBJECTIVE: Extensive research has documented the negative nutritional impact of head neck cancer (HNC) treatment, but few studies have addressed the patients' experiences. The purpose of this study was to describe how patients with HNC experience the nutritional situation and perceive nutritional support from diagnosis to the post-treatment phase. METHODS: Patients with HNC were recruited from a randomised pilot study. Individual interviews were conducted after radiotherapy with 10 participants aged 49 - 70 years and analysed by qualitative content analysis. RESULTS: Undergoing surgery was experienced as a poor nutritional starting point for the upcoming radiotherapy. During radiotherapy, increasing side effects made the participants customise their meals to improve food intake. About halfway through radiotherapy, virtually no food intake was experienced and hospital admissions and initiations of tube-feeding occurred in this period. Oral nutritional supplements were recommended for all, but eventually became unbearable to ingest. When radiotherapy was finally completed, the participants felt discouraged about the persistent side effects preventing them from resume eating. The participants missed tailored information about development of side effects and involvement of a dietitian when reflecting on the treatment-period. CONCLUSION: The comprehensive nutritional problems experienced by patients with HNC require early nutritional assessments and improved individually tailored nutritional support.


Asunto(s)
Actitud Frente a la Salud , Neoplasias de Cabeza y Cuello/psicología , Neoplasias de Cabeza y Cuello/terapia , Estado Nutricional , Apoyo Nutricional/psicología , Radioterapia/efectos adversos , Anciano , Dieta , Suplementos Dietéticos , Ingestión de Alimentos , Nutrición Enteral , Conducta Alimentaria , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Disección del Cuello/efectos adversos , Noruega , Evaluación Nutricional , Nutricionistas , Proyectos Piloto , Investigación Cualitativa
2.
Int J Palliat Nurs ; 25(5): 216-223, 2019 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-31116660

RESUMEN

BACKGROUND: Nutritional problems often manifest during late-stage dementia, and some families may request to instigate artificial nutrition and hydration (ANH) therapies. In the US, an estimated one-third of nursing home patients with a severe cognitive impairment have artificial feeding tubes inserted. Fear that a relative could experience extreme hunger or thirst if they are not mechanically fed tends to be the main driver behind family's requests to implement artificial or enteral feeding methods. In contrast, artificial hydration is rarely given to older people with dementia in the UK and this practice of non-intervention tends to apply across all healthcare and hospice type environments. AIM: This literature review aims to evaluate the evidence to support the use and non-use of ANH. METHOD: A literature review was undertaken to examine the evidence around ANH for patients with dementia to offer support to families or carers contemplating feeding choices. CONCLUSION: This paper challenges the implementation of invasive ANH worldwide. It highlights how resorting to ANH does not necessarily lead to improvements in comfort, survival or wound healing. The risk of aspiration does not appear to significantly alter either.


Asunto(s)
Cuidadores/psicología , Demencia/dietoterapia , Nutrición Enteral/psicología , Familia/psicología , Apoyo Nutricional/psicología , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Toma de Decisiones , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Estados Unidos
3.
Acta Paediatr ; 107(12): 2199-2206, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-30192409

RESUMEN

AIM: Maintenance enteral nutrition (MEN) is routinely used in Paediatric Crohn's Disease (CD) to prolong remission although there is limited evidence for efficacy and a lack of formal guidelines. This study surveyed patients', parents' and professional experience with MEN. METHODS: Two questionnaires were developed to survey the experience of MEN; (i) Patients/Parents (children >10 years of age aimed to complete independently) and (ii) Dietitians. Questionnaires were sent to families prescribed MEN after exclusive enteral nutrition (EEN) between 2015-17 (n = 77) and dietitians working in paediatric regional centres in UK (n = 23). RESULTS: Response rate to the questionnaires was 53% patients, 62% parents and 83% dietitians. Patients/parents reported medical/dietetic advice to be the primary factor affecting compliance, 30% patients reported side effects. Fifty-six per cent of patients/58% parents stated a preference for dietary advice rather than MEN. Dietetic responses indicated 79% used MEN after EEN as standard procedure and 79% did not have exit criteria for MEN. Sixty-eight per cent perceived the taste was the primary factor affecting patient compliance. CONCLUSION: Patients' perception of the usefulness of MEN differs to professionals. This study highlights the extensive practice of MEN after EEN in clinical remission, which may not be nutritionally indicated. Patient preference is for dietary advice rather than MEN.


Asunto(s)
Enfermedad de Crohn/dietoterapia , Apoyo Nutricional/psicología , Adolescente , Niño , Femenino , Humanos , Masculino , Nutricionistas/psicología , Padres/psicología , Cooperación del Paciente/psicología , Cooperación del Paciente/estadística & datos numéricos , Encuestas y Cuestionarios
4.
J Pain Symptom Manage ; 56(4): 509-518.e3, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-30025938

RESUMEN

CONTEXT/OBJECTIVE: The extent to which patients' preferences for end-of-life (EOL) care are honored may be distorted if preferences are measured long before death, a common approach of existing research. We examined the concordance between cancer patients' states of life-sustaining treatments (LSTs) received in their last month and LST preference states assessed longitudinally over their last six months. METHODS: We examined states of preferred and received LSTs (cardiopulmonary resuscitation, intensive care unit care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and nasogastric tube feeding) in 271 cancer patients' last six months by a transition model with hidden Markov modeling (HMM). The extent of concordance was measured by a percentage and a kappa value. RESULTS: HMM identified four LST preference states: life-sustaining preferring, comfort preferring, uncertain, and nutrition preferring. HMM identified four LST states received in patients' last month: generally received LSTs, LSTs uniformly withheld, selectively received LSTs, and received intravenous nutrition only. LSTs received concurred poorly with patients' preferences estimated right before death (39.5% and kappa value: 0.06 [95% CI: -0.02, 0.13]). Patients in the life-sustaining-preferring, uncertain, and nutrition-preferring states primarily received no LSTs, and patients in three of four states received intravenous nutrition against their preferences. Concordance was strongest for comfort-preferring patients. CONCLUSIONS: Concordance was poor between patients' preferred and received LST states. Interventions are needed to clarify patients' EOL care goals and to facilitate their understanding about LST's ineffectiveness in prolonging life at EOL. Such interventions might increase patients' comfort preference and ensure concordance between their preferred and received EOL care.


Asunto(s)
Neoplasias/psicología , Neoplasias/terapia , Prioridad del Paciente/psicología , Cuidado Terminal/psicología , Enfermo Terminal/psicología , Femenino , Humanos , Cuidados para Prolongación de la Vida/psicología , Estudios Longitudinales , Masculino , Cadenas de Markov , Persona de Mediana Edad , Apoyo Nutricional/psicología , Comodidad del Paciente , Calidad de Vida
5.
BMC Palliat Care ; 16(1): 7, 2017 Jan 21.
Artículo en Inglés | MEDLINE | ID: mdl-28109272

RESUMEN

BACKGROUND: In February 2nd 2016, the French government enacted the Claeys-Leonetti law that forbade euthanasia and established the right to deep and continuous sedation for end-of-life patients. Moreover, the law also obliges clinicians to abide by any advance directives regarding treatment and investigation, except in cases where they are "obviously inappropriate" in a given medical situation, or in cases of emergency, in order to allow medical staff to take time to assess the patient's situation. Artificial feeding and hydration are considered as treatment. The aim of this report is to investigate individuals receiving palliative care about their opinion about euthanasia, about advance directives, about the right to deep and continuous sedation, and the right to stopping artificial feeding and hydration. METHODS: The study was an opinion survey conducted among patients treated in two different palliative care institutions: a palliative care unit at the University Hospital (Timone, Marseille, France) and a non-profit association palliative care home ("La Maison", Gardanne, France). Face-to-face interviews were performed by two investigators. The survey included sociodemographics, clinical data, and opinions about euthanasia, deep and continuous sedation, stopping artificial feeding and hydration, and advance directives. RESULTS: Forty patients were interviewed. The mean age was 59.8 years (standard deviation 12). Fifty three percent reported opposition to legalized euthanasia. Eighty three percent were in favour of the right to deep and continuous sedation in patients with refractory pain, 75% when it concerns a patient unable to express their wishes, and 68% when the patient decides to stop vital treatment. Fifty eight percent reported that artificial nutrition and hydration should be considered as care. Fifty eight percent of the patients interviewed would like to see doctors follow the express wishes contained in advance care directives and 53% that advance directives should be subject to a validity period. CONCLUSIONS: This work demonstrates the feasibility of discussing sensitive issues such as euthanasia, continuous and deep sedation and cessation of care with patients receiving palliative care. These preliminary results point to the need to perform a larger study in order to find determinant factors in this specific situation and to incorporate them into thinking about end-of-life laws.


Asunto(s)
Actitud Frente a la Muerte , Cuidados Paliativos/legislación & jurisprudencia , Cuidado Terminal/legislación & jurisprudencia , Adulto , Directivas Anticipadas/legislación & jurisprudencia , Directivas Anticipadas/psicología , Anciano , Anciano de 80 o más Años , Dolor en Cáncer/psicología , Dolor en Cáncer/terapia , Sedación Profunda/psicología , Eutanasia/legislación & jurisprudencia , Eutanasia/psicología , Femenino , Fluidoterapia/psicología , Francia , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Neoplasias/terapia , Apoyo Nutricional/psicología , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Privación de Tratamiento/legislación & jurisprudencia
6.
J Pediatr Gastroenterol Nutr ; 62(1): 174-9, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26237373

RESUMEN

OBJECTIVES: Malnutrition in critically ill children contributes to morbidity and mortality. The French-speaking pediatric intensive care nutrition group (NutriSIP) aims to promote optimal nutrition through education and research. METHODS: The NutriSIP-designed NutriRéa-Ped study included a cross-sectional survey. This 62-item survey was sent to the nursing teams of all of the French-speaking pediatric intensive care units (PICUs) to evaluate nurses' nutrition knowledge and practices. One nurse per PICU was asked to answer and describe the practices of their team. RESULTS: Of 44 PICUs, 40 responded in Algeria, Belgium, Canada, France, Lebanon, Luxemburg, and Switzerland. The majority considered nutrition as a priority care but only 12 of the 40 (30%) had a nutrition support team, 26 of the 40 (65%) had written nutrition protocols, and 19 of 39 (49%) nursing teams felt confident with the nutrition goals. Nursing staff generally did not know how to determine nutritional requirements or to interpret malnutrition indices. They were also unaware of reduced preoperative fasting times and fast-track concepts. In 17 of 35 (49%) PICUs, the target start time for enteral feeding was within the first 24 hours; however, frequent interruptions occurred because of neuromuscular blockade, fasting for extubation or surgery, and high gastric residual volumes. Combined pediatric neonatal intensive care units were less likely to perform systematic nutritional assessment and to start enteral nutrition rapidly. CONCLUSIONS: We found a large variation in nursing practices around nutrition, exacerbated by the lack of nutritional guidelines but also because of the inadequate nursing knowledge around nutritional factors. These findings encourage the NutriSIP to improve nutrition through focused education programs and research.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Unidades de Cuidado Intensivo Pediátrico/estadística & datos numéricos , Personal de Enfermería en Hospital/psicología , Apoyo Nutricional/enfermería , Pautas de la Práctica en Enfermería/estadística & datos numéricos , Adulto , Argelia , Bélgica , Canadá , Niño , Preescolar , Enfermería de Cuidados Críticos/métodos , Enfermería de Cuidados Críticos/estadística & datos numéricos , Estudios Transversales , Nutrición Enteral/métodos , Nutrición Enteral/enfermería , Nutrición Enteral/psicología , Femenino , Francia , Humanos , Lactante , Recién Nacido , Lenguaje , Líbano , Luxemburgo , Masculino , Enfermería Neonatal/métodos , Enfermería Neonatal/estadística & datos numéricos , Apoyo Nutricional/métodos , Apoyo Nutricional/psicología , Encuestas y Cuestionarios , Suiza
7.
Med Monatsschr Pharm ; 39(11): 470-3, 2016 11.
Artículo en Alemán | MEDLINE | ID: mdl-29956524

RESUMEN

Pharmacists are an integral factor in palliative medical care, especially in the context of specialised outpatient palliative care (in Germany "SAPV"). As part of a multi professional team, pharmacists take care of patients especially in complex supply situations. The drug therapy is always checked for side-effects and interactions, and the medication is adjusted to application methods which are still possible (e. g. subcutaneous administration or administration via gastro-intestinal probes). A 24/7 supply of urgently needed medicines needs to be ensured and clinical nutrition must be suited to the real needs of the patient. Prompt aseptic manufacturing of analgesic pumps and the supply of medical devices is a priority of regional specialised pharmacies, whilst the basic support can be provided by all pharmacies who wish to engage in this ethically demanding field.


Asunto(s)
Analgésicos Opioides/uso terapéutico , Servicios de Atención a Domicilio Provisto por Hospital , Cuidados Paliativos/métodos , Grupo de Atención al Paciente , Servicios Farmacéuticos , Analgésicos Opioides/efectos adversos , Anorexia/psicología , Anorexia/terapia , Caquexia/psicología , Caquexia/terapia , Vías de Administración de Medicamentos , Interacciones Farmacológicas , Humanos , Bombas de Infusión , Apoyo Nutricional/métodos , Apoyo Nutricional/psicología , Uso Fuera de lo Indicado , Manejo del Dolor/métodos , Manejo del Dolor/psicología , Cuidados Paliativos/psicología , Calidad de Vida/psicología
8.
Am J Hosp Palliat Care ; 32(4): 401-6, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-24526764

RESUMEN

CONTEXT: In spite of the existence of clinical guidelines and a legal framework in France, the withdrawal of artificial nutrition (AN) in palliative care remains a difficult situation for caregivers who are confronted with this reality. OBJECTIVES: To describe the perception of caregivers on the withdrawal of AN and to compare this perception between caregivers who have already been confronted with this situation and those who have not. METHODS: Cross-sectional survey questionnaire of nurses and nurses' aides (n = 274) working in medicine, surgery, and palliative care departments of a regional hospital. RESULTS: Of the caregivers, 59.5% declared having been confronted with the withdrawal of AN in their professional practice. This was associated with a better perception by these caregivers even if their knowledge on the criteria to be considered in the decision was not significantly modified. CONCLUSION: The coherence of the withdrawal of AN with the personal beliefs of the caregivers, already high in the absence of being confronted with this practice, is better among caregivers who have been confronted with this situation. The lack of information perceived by caregivers should prompt us to develop additional training on the withdrawal of AN, its objectives, and its clinical consequences.


Asunto(s)
Cuidadores/psicología , Eutanasia Pasiva/psicología , Apoyo Nutricional/psicología , Cuidados Paliativos/psicología , Estudios Transversales , Eutanasia Pasiva/ética , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Apoyo Nutricional/ética , Cuidados Paliativos/ética , Percepción
9.
Am J Hosp Palliat Care ; 32(7): 732-7, 2015 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-24928836

RESUMEN

BACKGROUND: Withdrawing artificial nutrition in palliative care is an issue that often leads to ethical dilemmas among health care providers, despite clinical guidelines. OBJECTIVES: To describe the experience of health care providers confronted with the withdrawing of artificial nutrition at the end of life and identifying the factors related to the level of ethical dilemmas. METHODS: Cross-sectional survey questionnaire of all the nurses and nurses' aides working in medicine, surgery, and palliative care departments of a regional hospital and who have already been confronted with the withdrawal of artificial nutrition. RESULTS: Of 818 questionnaires sent, 274 were returned (response rate 33.5%); 60% (163) of the care providers who responded were involved in withdrawing artificial nutrition at the end of life. Among these, 42 (25.8%) had always or often been affected with ethical dilemmas, and 97 (60%) responded that withdrawing artificial nutrition had always or often been preceded by a multidisciplinary discussion. Items significantly associated with a high level of ethical dilemmas were (1) existence of differences in opinion within the health care team, (2) lack of information regarding the indication of the withdrawal of artificial nutrition, (3) feeling uncomfortable with the patient and his or her relatives, (4) guilt, (5) feeling of abandonment of care, and (6) uneasiness. CONCLUSION: Health care providers seem to have a lack of information and consensus regarding the withdrawal of artificial nutrition at the end of life. The ethical dimension of withdrawing artificial nutrition in palliative care has a strong impact on care providers, regardless of the circumstances of the withdrawal.


Asunto(s)
Actitud del Personal de Salud , Cuidadores/psicología , Conocimientos, Actitudes y Práctica en Salud , Apoyo Nutricional/psicología , Cuidado Terminal/ética , Cuidado Terminal/psicología , Estudios Transversales , Femenino , Humanos , Masculino , Principios Morales , Apoyo Nutricional/ética , Grupo de Atención al Paciente/ética , Encuestas y Cuestionarios
10.
Support Care Cancer ; 22(12): 3287-99, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25084741

RESUMEN

PURPOSE: Deciding on artificial nutrition and hydration (ANH) at the end of life (EoL) may cause concerns in patients and their family caregivers but there is scarce evidence regarding their preferences. Therefore, the aim of this study was to assess the impact of factors associated with ANH decision making. METHODS: Prospective, Cross-sectional survey. Adult patients admitted to hospital for symptoms of advanced cancer as well as their family caregivers completed a self-administered questionnaire. Items included personal views and concerns about ANH. Family caregivers additionally recorded their preference for their loved one and, if applicable, previous experience with ANH decisions. RESULTS: Thirty-nine out of sixty-five patients and 30/72 relatives responded. Higher age of the patient was significantly correlated with both the patient's and the relative's decision to forgo ANH (Kruskal-Wallis test, p < 0.01). Thirty-nine percent of patients, 37 % of relatives if deciding for themselves, and 24 % of relatives if deciding on behalf of their loved one opted against ANH; 36, 40 and 52 % preferred artificial hydration (AH) only (χ (2) test, p <0.001), while 23, 23 and 24 %, respectively, wished to receive ANH. Patients felt more confident about decisions on artificial nutrition (AN) than caregivers (T test, p < 0.05) and less concerned about adverse effects of forgoing ANH on pain, agitation and sensation of hunger and thirst (χ (2) test, p < 0.05). Satisfaction of patients with communication regarding forgoing ANH (5.0 ± 2.8 on a Likert scale from 0 to 10) correlated with their confidence (Spearman's rho, p < 0.01). A thorough consultation with the attending physician on ANH issues was the favoured source of support for 77 % of patients and 97 % of relatives. A majority of patients considered their relatives' opinion (67 %) and their own advance directives (62 %) as crucial for making ANH decisions, and 46 % of them had such a document completed. CONCLUSION: Cancer patients and their relatives have similar preferences regarding ANH at the EoL, but relatives are reluctant to withhold AH if deciding for their loved one. While patients seem to be confident with ANH decision making, their caregivers may particularly benefit from discussing ANH options to dissipate fears.


Asunto(s)
Cuidadores/psicología , Fluidoterapia/psicología , Neoplasias , Apoyo Nutricional , Nutrición Parenteral/psicología , Cuidado Terminal , Planificación Anticipada de Atención , Anciano , Actitud , Estudios Transversales , Toma de Decisiones , Femenino , Alemania , Humanos , Masculino , Persona de Mediana Edad , Estadificación de Neoplasias , Neoplasias/patología , Neoplasias/psicología , Neoplasias/terapia , Apoyo Nutricional/métodos , Apoyo Nutricional/psicología , Prioridad del Paciente , Encuestas y Cuestionarios , Cuidado Terminal/métodos , Cuidado Terminal/psicología
11.
Congenit Heart Dis ; 9(3): 203-10, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-23870136

RESUMEN

OBJECTIVE: The aim of this article is to investigate the impact of a child's severe congenital heart disease on the family and to prospectively examine the influence of disease specific and psychosocial factors on the family. DESIGN: A prospective cohort study. PATIENTS: Parents of 104 infants who had undergone cardiopulmonary bypass surgery before the age of 12 months for congenital heart disease were included. INTERVENTIONS: None. OUTCOME MEASURES: Parents completed the generic Impact on Family scale and a social support questionnaire; a large number of medical data were extracted from the patients' hospital records. RESULTS: Parents most frequently reported that they were thinking about not having more children and living on a "roller coaster." No difference was found in the total Impact on Family scale score between fathers and mothers. The presence of a genetic disorder in the child and lower levels of perceived social support was significantly associated with a greater impact on the family. CONCLUSIONS: The impact of an infant's congenital heart disease on the family is determined both by child's medical condition and family's psychosocial factors. Families with poorer social support network may have the greatest need for professional interventions, especially if their child has an underlying genetic disorder.


Asunto(s)
Costo de Enfermedad , Relaciones Familiares , Cardiopatías Congénitas/psicología , Padres/psicología , Adaptación Psicológica , Puente Cardiopulmonar/psicología , Emociones , Femenino , Predisposición Genética a la Enfermedad , Cardiopatías Congénitas/diagnóstico , Cardiopatías Congénitas/genética , Cardiopatías Congénitas/terapia , Humanos , Lactante , Tiempo de Internación , Masculino , Apoyo Nutricional/psicología , Estudios Prospectivos , Índice de Severidad de la Enfermedad , Apoyo Social , Estrés Psicológico/etiología , Encuestas y Cuestionarios
12.
Br J Nurs ; 20(20): 1320-4, 2011.
Artículo en Inglés | MEDLINE | ID: mdl-22068011

RESUMEN

Quality of life measures can be used by health professionals to assess effectiveness of nutritional interventions administered to palliative care patients. Stabilizing, maintaining and attempting to increase weight in palliative care patients through the support of oral feeding, and provision of artificial feeding, has been shown to mediate the metabolic and physical wasting effects of the disease process and improve general comfort. A quality of life instrument is a multi-dimensional questionnaire that health professionals can use to measure domains relating to physical, psychological and social aspects of living, and health and disease outcomes. There are three instruments specifically designed to assess quality of life in patients receiving palliative care. These are: The Palliative Care Quality of life Instrument, The Assessment of Quality of Life at the End of Life (AQEL), and The Spitzer Quality of Life Index (SQLI). General use quality of life measures are multifaceted; however, for use with palliative care patients, they have added dimensions of spirituality, existential issues (purpose and meaning of life), family members' perceptions of quality of care, symptom control and family support. Use of quality of life scales provides health professionals and organizations with an ideal measure for planning, targeting and evaluating health interventions.


Asunto(s)
Apoyo Nutricional/psicología , Apoyo Nutricional/normas , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Calidad de Vida , Humanos , Cuidado Terminal/psicología , Cuidado Terminal/normas
13.
Physis (Rio J.) ; 21(2): 647-662, 2011.
Artículo en Portugués | LILACS | ID: lil-596071

RESUMEN

Trata-se de investigar os significados atribuídos por pacientes portadores do vírus da hepatite C sobre a doença e o tratamento dietético. Para tanto, adota-se a metodologia da pesquisa qualitativa em que o sujeito interage com sua narrativa sobre o objeto de estudo e os pesquisadores analisam cuidadosamente seus enunciados. As acepções sobre o adoecer e as mudanças dos hábitos alimentares e de vida dos pacientes foram analisadas por meio da obtenção de entrevistas em profundidade. Ao trazer os sentidos expressos sobre a doença, cria-se a possibilidade de compreensão dos aspectos culturais sobre a alimentação, a nutrição e a dietética; um desafio para os profissionais de saúde e nutrição, que precisam relatar a seus pacientes a necessidade de seguir hábitos alimentares mais saudáveis, implicando alterações nem sempre simples de serem realizadas. Consideram-se hábitos e representações do ato da alimentação, como parte da identidade cultural do sujeito. Justifica-se este estudo pela necessidade de situar maior interação entre profissionais, estudantes de saúde e pacientes de modo a ampliar a compreensão dos fenômenos que cercam a experiência da doença pelos pacientes. Conclui-se que os pacientes de hepatite C atendidos no ambulatório do Hospital Universitário da cidade de Salvador e o profissional podem atingir os objetivos de aconselhamentos nutricionais, se trilharem direções dialógicas. Com isso, observou-se a adesão à orientação dietética sem rupturas bruscas e sofrimentos dos pacientes.


This paper investigates the meanings attributed by patients to hepatitis C on disease and dietary treatment. To this end, we adopt the methodology of qualitative research in which the individual interacts with his narrative on the subject of study and the researchers carefully examine their statements. The meanings of the illness and changes in dietary habits and life of the patients were analyzed by obtaining in-depth interviews. By bringing the senses expressed about the disease, it creates the possibility of understanding cultural factors on diet, nutrition and dietetics - a challenge for health professionals and nutrition, which need to report their patients the need to follow dietary healthier, involving changes not always simple to perform. Habits and representations of the act of feeding are considered part of the cultural identity of the subject. This study is justified by the need to place greater interaction among professionals, students, patients and health so as to broaden the understanding of the phenomena that surround the experience of illness by patients. We conclude that outpatients with hepatitis C at the University Hospital in the city of Salvador and the professional can achieve the goals of nutritional advice, if they follow dialogic lines. Thus, there was compliance with dietary counseling without sudden breaks and suffering of patients.


Asunto(s)
Conducta Alimentaria/ética , Conducta Alimentaria/etnología , Conducta Alimentaria/psicología , Hepatitis C Crónica/prevención & control , Hepatitis C Crónica/terapia , Hepatitis C/prevención & control , Apoyo Nutricional/psicología , Brasil/epidemiología , Brasil/etnología , Conductas Relacionadas con la Salud/etnología , Dietoterapia/tendencias , Estilo de Vida , Nutricionistas/psicología , Personal de Salud/psicología
14.
Br J Community Nurs ; 14(10): 427-8, 430-1, 2009 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-19966682

RESUMEN

Nutrition in palliative care and at the end of life should be one of the goals for improving quality of life. It is important to address issues of food and feeding at this time to assist in the management of troublesome symptoms as well as to enhance the remaining life. While this paper focuses upon the nutritional aspects of cancer in palliative care, the sentiments are applicable to other serious chronic illnesses such as advanced cardiac failure, chronic obstructive pulmonary disease and dementia. Cancer and its treatments exert a major impact upon physical and psychological reserves and at the end of life problems with appetite and the ability to eat and drink compound such impact. The aims of nutritional care minimize food-related discomfort and maximize food enjoyment. Identification of any nutritional problems can facilitate the employment of strategies which need to be discussed with the patient and their families and reviewed regularly as conditions change. Ethical questions will be raised concerning the provision of food and fluids to a person nearing the end of their life. Nurses need to acknowledge that food has greater significance than the provision of nutrients.


Asunto(s)
Desnutrición/prevención & control , Neoplasias/prevención & control , Apoyo Nutricional/métodos , Cuidados Paliativos/métodos , Disentimientos y Disputas , Ingestión de Energía , Humanos , Desnutrición/etiología , Neoplasias/complicaciones , Neoplasias/psicología , Rol de la Enfermera , Estado Nutricional , Apoyo Nutricional/ética , Apoyo Nutricional/psicología , Cuidados Paliativos/ética , Cuidados Paliativos/psicología , Planificación de Atención al Paciente , Selección de Paciente , Calidad de Vida
15.
J Hum Nutr Diet ; 22(3): 219-25, 2009 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-19504737

RESUMEN

BACKGROUND: Home nutritional support (HNS) aims to improve or maintain the patient's quality of life. Given the high social cost of such treatment, however, it is important to investigate whether the perceived quality of life of patients receiving HNS does in fact reflect these objectives. The present study aimed to evaluate the health-related quality of life (HRQoL) of patients who receive HNS. METHODS: A multicentre, cross-sectional study of 267 patients was carried out. HRQoL was evaluated using the EuroQoL-5-Dimensions (EQ-5D) questionnaire. The Visual Analogue Scale (VAS) was used to complement the EQ-5D, aiming to provide an overall estimation of patient quality of life. RESULTS: The EQ-5D questionnaire showed that 25% of the subjects valued their HRQoL at between -0.08 and 0.15, 50% at between 0.16 and 0.69 and 25% at between 0.70 and 1. Results from the VAS showed that 75% of patients claimed to have a HRQoL > 40. The median for the VAS was 50. Pathologies were oncological (44.0%), neurological (36.6%) and others (19.3%). The results obtained demonstrate that neurological patients placed a lower value on their HRQoL compared to those of other groups (P < 0.001). In addition, women rated their quality of life lower than men in all pathologies (P = 0.006). CONCLUSIONS: Perceived HRQoL varied depending on pathology and sex. It was difficult to draw conclusions concerning the impact of HNS because of a lack of baseline data and relevant validated measurement tools. The present study highlights the need for more research into the relationship between HNS and HRQoL.


Asunto(s)
Estado de Salud , Servicios de Atención de Salud a Domicilio , Apoyo Nutricional , Calidad de Vida , Actividades Cotidianas , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Enfermedades del Sistema Nervioso/psicología , Apoyo Nutricional/psicología , Autorrevelación , Factores Sexuales , Condiciones Sociales , Encuestas y Cuestionarios
16.
Curr Opin Support Palliat Care ; 3(3): 195-202, 2009 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-19528802

RESUMEN

PURPOSE OF REVIEW: To summarize current knowledge about nutritional aspects in the final stage of life, with emphasis on mechanisms and clinical diagnosis, ethical aspects and management. RECENT FINDINGS: The most recent advances on the subject include new mechanisms involved in the pathophysiology, use of therapeutic approach combined with n-3 fatty acids and the active intervention of the patient in decision making. SUMMARY: The nutritional deterioration in a patient who passes the last stages of his life constitutes a subject area to varied analysis and considerations. For this reason, there exist an increasing number of investigations, particularly in the areas of pathophysiology and of therapeutics. The aspects related to quality of life, cultural context and bioethics, add more complexity to the subject.


Asunto(s)
Estimulantes del Apetito/uso terapéutico , Estado Nutricional/fisiología , Apoyo Nutricional/métodos , Cuidado Terminal/métodos , Enfermo Terminal , Anorexia/tratamiento farmacológico , Anorexia/etiología , Estimulantes del Apetito/efectos adversos , Caquexia/tratamiento farmacológico , Caquexia/etiología , Humanos , Apoyo Nutricional/ética , Apoyo Nutricional/psicología , Participación del Paciente , Calidad de Vida , Cuidado Terminal/ética , Cuidado Terminal/psicología
17.
Int J Palliat Nurs ; 14(4): 182-8, 2008 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-18681346

RESUMEN

We conducted a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n = 13), families (n = 23), and health care providers (n = 11) (McClement, 2001). That work generated an inductively derived model that captured important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit, and has been reported elsewhere (McClement et al, 2003). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of 'letting nature take its course: it's best not to eat.' The strategies family members use when letting nature take its course, and the consequences of these strategies for patients, family members and health care providers are reported. Implications for practice and research are provided.


Asunto(s)
Actitud del Personal de Salud , Actitud Frente a la Salud , Familia/psicología , Neoplasias/psicología , Apoyo Nutricional/psicología , Cuidados Paliativos/psicología , Adaptación Psicológica , Adulto , Anciano , Anciano de 80 o más Años , Canadá , Empatía , Femenino , Hospitales Universitarios , Humanos , Masculino , Persona de Mediana Edad , Modelos Psicológicos , Rol de la Enfermera/psicología , Investigación Metodológica en Enfermería , Personal de Enfermería en Hospital/psicología , Apoyo Nutricional/métodos , Apoyo Nutricional/enfermería , Cuidados Paliativos/métodos , Defensa del Paciente , Investigación Cualitativa , Encuestas y Cuestionarios
18.
Cancer Treat Rev ; 34(6): 568-75, 2008 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-18455316

RESUMEN

INTRODUCTION: In patients with gastrointestinal (GI) cancer, severe malnutrition is associated with increased morbidity and mortality, reduction of treatment efficacy, and increased length of hospital stay. Therefore, systematic screening and care of malnutrition is mandatory. MATERIALS AND METHODS: Data for this review were identified by searches of Medline with and without MeSH database and Cancerlit. Studies were selected only if they were randomised clinical trials or historical reports. References were also identified from reference lists in relevant previously published articles. Recent guidelines and meta-analyses were included. Only articles published in English were taken into consideration. RESULTS: For surgical patients, practical information such as weight loss or subjective global assessment would provide a better basis for deciding whether or not to delay surgery. At least 10 days of nutritional support is recommended in severely malnourished patients before major digestive surgery. In non-severely malnourished patients, preoperative oral immunonutrition is associated with a 50% decrease in postoperative complications. The benefit of immune-enhancing diets in severely malnourished patients remains to be proven. For patients undergoing radiochemotherapy, dietary counselling should be proposed to all patients. In cases of severely malnourished patients or if dietary counselling suffers a setback, enteral nutrition should be recommended. Parenteral nutrition should be reserved for patients with severe digestive intolerance when enteral nutrition is not possible. CONCLUSION: Propose an adaptive nutritional support at each step of a multimodal GI oncological treatment is essential. These recommendations should be used in daily practice but should also be included in all clinical research protocols.


Asunto(s)
Neoplasias Gastrointestinales/dietoterapia , Trastornos Nutricionales/dietoterapia , Apoyo Nutricional/métodos , Ensayos Clínicos como Asunto , Neoplasias Gastrointestinales/complicaciones , Neoplasias Gastrointestinales/fisiopatología , Humanos , Trastornos Nutricionales/etiología , Trastornos Nutricionales/psicología , Apoyo Nutricional/psicología , Apoyo Nutricional/estadística & datos numéricos
19.
Clin Nutr ; 27(2): 196-202, 2008 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-18295936

RESUMEN

BACKGROUND & AIMS: Though a great interest and willingness to nutrition therapy, there is an insufficient practice compared to the proposed ESPEN guidelines for nutrition therapy. The aim of this questionnaire was to study doctors and nurses' self-reported knowledge in nutritional practice, with focus on ESPEN's guidelines in nutritional screening, assessment and treatment. METHODS: A questionnaire about different aspects of nutritional practice was answered by 4512 doctors and nurses in Denmark, Sweden and Norway. RESULTS: The most common cause for insufficient nutritional practice was lack of nutritional knowledge. Twenty-five percent found it difficult to identify patient in need of nutritional therapy, 39% lacked techniques for identifying malnourished patients, and 53% found it difficult to calculate the patients' energy requirement and 66% lacked national guidelines for clinical nutrition. Twenty-eight percent answered that insufficient nutrition practice could lead to complications and prolonged hospital stay. Those that answered that their nutritional knowledge was good had also a better nutritional practice. CONCLUSION: The self-reported nutritional knowledge was inadequate among Scandinavian doctors and nurses. Increased nutritional knowledge seems to improve the nutritional practice. A combination of an integrated nutrition curriculum during the education, together with post-graduated education for both physicians and nurses should be established.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/psicología , Desnutrición/diagnóstico , Fenómenos Fisiológicos de la Nutrición/fisiología , Ciencias de la Nutrición/educación , Actitud del Personal de Salud , Dinamarca , Femenino , Humanos , Masculino , Tamizaje Masivo , Noruega , Personal de Enfermería en Hospital/psicología , Ciencias de la Nutrición/normas , Apoyo Nutricional/psicología , Médicos/psicología , Autorrevelación , Encuestas y Cuestionarios , Suecia
20.
Gastroenterol Nurs ; 29(4): 283-8; quiz 289-90, 2006.
Artículo en Inglés | MEDLINE | ID: mdl-16974162

RESUMEN

The care of the patient with gastrointestinal disease is complex and challenging. The reasons for the complexity are varied and different for each patient. Any of these variables can affect the nutritional health of the patient, an essential element of care that supports healing, recovery, and improved quality of life. A nutritional assessment, an evaluation of the patient's nutritional status, can be used to establish the patient's weight history, dietary habits, tolerances, and likes and dislikes. Intake and output values from this assessment provide information relating to the patient's ability to meet his or her nutritional requirements orally or whether alternate methods for nutrition support need be considered, such as a feeding tube or a central intravenous catheter. Parenteral nutrition is the intravenous nutrition supplementation required when the oral or enteral route for nutrition support is unavailable or impossible. In this article, a clinical case scenario for a 34-year-old man with a history of cancer and an extensive bowel resection will be presented to better explore the decision-making process for determining appropriate nutrition support. In addition, various issues the health practitioner needs to consider when managing the nutritional health of the complex gastrointestinal patient will be explored, relative to Jean Watson's Theory of Caring.


Asunto(s)
Neoplasias del Colon/complicaciones , Empatía , Teoría de Enfermería , Trastornos Nutricionales/prevención & control , Apoyo Nutricional/enfermería , Adulto , Neoplasias del Colon/terapia , Resultado Fatal , Conducta Alimentaria , Preferencias Alimentarias , Conducta de Ayuda , Salud Holística , Humanos , Masculino , Anamnesis , Rol de la Enfermera , Relaciones Enfermero-Paciente , Evaluación en Enfermería , Evaluación Nutricional , Trastornos Nutricionales/etiología , Estado Nutricional , Apoyo Nutricional/métodos , Apoyo Nutricional/psicología , Planificación de Atención al Paciente , Confianza
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