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      La alimentación como fuente de conflicto entre paciente y familia en cuidados paliativos Translated title: Feeding as a source of conflict between patient and family in palliative care

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          Abstract

          Resumen Introducción: los conflictos forman parte de las relaciones humanas. Pocos estudios han contemplado los conflictos que la alimentación puede producir en la fase final de la vida, los factores que inciden en su aparición y la forma de gestionarlos. Su conocimiento ayudaría al equipo asistencial a mejorar el cuidado de estos pacientes y sus familias. Objetivo: analizar la existencia del conflicto intrafamiliar vinculado con la alimentación en la enfermedad oncológica en cuidados paliativos, la gestión del mismo y la influencia en su aparición de los cambios en la alimentación, el control sobre la misma, la necesidad de comer, el acompañamiento, la adaptación a la enfermedad y la vinculación de la alimentación con la supervivencia, la calidad de vida y el cuidado. Métodos: el diseño del estudio fue transversal. Se recogieron datos de 57 parejas formadas por un paciente oncológico en cuidados paliativos y su cuidador principal por medio de una entrevista ad hoc validada y de la escala Perceived Adjustement to Chronic Illness Scale (PACIS). Los datos se analizaron mediante análisis de contenidos y análisis descriptivos e inferenciales. Resultados: pacientes y cuidadores reconocieron la existencia de un conflicto relacionado con la alimentación del paciente (49,1 % y 54,4 %), gestionándolo cerca del 30 % de forma inadecuada. Ninguna de las variables analizadas resultó estadísticamente significativa en relación a la aparición del conflicto (considerando p < 0,05), excepto la necesidad de comer del paciente (χ² = 9,163; p = 0,027). Conclusiones: el conflicto intrafamiliar debido a la alimentación se presenta como un problema que requiere reflexión, análisis e intervención por parte del equipo asistencial, dado que no se han podido establecer todos los factores que inciden en su aparición.

          Translated abstract

          Abstract Introduction: conflicts are part of human relationships. Few studies have looked at the conflicts that food can produce at the end of life, the factors that affect its appearance, and the way to manage them. This knowledge would help healthcare teams to improve the care of these patients and their families. Aim: to analyze the existence of a family conflict linked to food in palliative-care oncological patients, its management, and the influence on their appearance of changes in diet, diet control, need to eat, support, adaptation to disease, and the association of feeding with survival, quality of life, and care. Methods: the design of the study was cross-sectional. Data from 57 palliative-care oncological patient-family caregiver pairs were collected through a validated ad hoc interview and the PACIS scale. The data was analyzed through content analyses and descriptive and inferential analyses. Results: patients and caregivers recognized the existence of conflict related to the patient's diet (49.1 % and 54.4 %), with approximately 30 % managing it in an inappropriate way. None of the analyzed variables was statistically significant in relation to conflict appearance (considering p < 0.05), except patient need to eat (χ² = 9.163, p = 0,027). Conclusions: family conflict due to patient feeding is reported as a problem that requires reflection, analysis, and intervention by the healthcare team, given that all factors involved in its appearance could not be established.

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          Most cited references29

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          The experience of cancer cachexia: a qualitative study of advanced cancer patients and their family members.

          Cachexia in advanced malignancy is a debilitating syndrome which contributes to approximately two million deaths worldwide annually. In spite of advances in understanding the biomedical aspects of cancer cachexia, little attention has been paid to exploring its holistic impact on patients and those who care for them. The aim of this paper is to describe the lived experience of cachexia from the perspective of patients with cancer and their family members. An interpretative phenomenological approach was employed. A purposive sampling strategy recruited 15 patients and 12 family members from the Regional Cancer Centre in Northern Ireland. Each participant was interviewed during 2004/2005 using an unstructured interview. All interviews were recorded and transcribed verbatim. Analysis combined a two stage approach using thematic and interpretative phenomenological analysis. Analysis generated six superordinate themes that reflected the complex dynamics of the cachexia experience. Themes were: physiological changes in appetite; visuality of cachexia; weight loss interpreted as a bad sign; response from health care professionals; conflict over food; and coping responses. Findings confirmed that cancer cachexia has far reaching implications for patients and their families, extending beyond physical problems into psychological, social and emotional issues. This insight is a critical first step in the development of more responsive care for these clients.
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            The prevalence of concern about weight loss and change in eating habits in people with advanced cancer.

            Weight loss and anorexia are commonly reported symptoms in people with advanced cancer. Little is known about patient experience of these phenomena, in particular whether they find them of concern. In this study, the prevalence of weight loss and eating-related concern was evaluated in patients with advanced cancer receiving specialist palliative homecare. The survey was a component of a larger study exploring the potential for helping patients and their families live with weight loss and change in eating habits. Patients were under the care of two specialist palliative homecare teams in the south of England in 2003. The questionnaire was distributed to the total eligible caseload of 233 patients with advanced cancer. The response rate was 85%. More than three-quarters of the 199 patients who returned the questionnaires reported weight loss (79%) and/or eating less (76%). Excluding the 32 patients (16%) who had sought help from a family member or friend to complete the questionnaires, more than half (52%) reported concern about weight loss and/or eating. Concern about weight loss or eating was found irrespective of proximity to death. Weight loss and eating-related concerns are commonly experienced by people with advanced cancer receiving palliative homecare. Further work is needed to establish if concerns are amenable to interventions that translate into meaningful outcomes for patients and their families.
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              Fighting a losing battle: eating-related distress of men with advanced cancer and their female partners. A mixed-methods study.

              Anorexia/cachexia is a frequent complication of advanced cancer with poorly understood psychosocial impact or eating-related distress (ERD) on both patients and family members. To assist palliative care practitioners manage this important psychosocial aspect of care, we aimed to discover and describe elements of ERD, focusing on male patients with advanced cancer and their female partners. Nineteen male patients and their partners were systematically investigated by (1) focus group interviews and data analysis inspired by Grounded Theory, and (2) a comparative survey with categorical questions. For patients, eating-related distress was characterised by obstruction to eating, poor and capricious appetite, a disconnection of oral intake and ability to gain weight, and continuous efforts to eat. Partners expressed feelings of deep concern, frustration, and insufficiency in their loving and innovative efforts to prepare appealing food. Partners were more concerned about patients' weight loss than patients themselves (P =0.002). Patients felt more pressure to eat from partners than they estimated (P =0.007). Anorexia/cachexia of male cancer patients affects the cooking at home, a couple's daily eating routines, and their spousal relationship. Identification of ERD may trigger targeted psychosocial interventions.
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                Author and article information

                Journal
                nh
                Nutrición Hospitalaria
                Nutr. Hosp.
                Grupo Arán (Madrid, Madrid, Spain )
                0212-1611
                1699-5198
                February 2020
                : 37
                : 1
                : 137-146
                Affiliations
                [3] Valencia orgnameHospital Dr. Peset orgdiv1Unidad funcional de Cuidados Paliativos orgdiv2Servicio de Oncología Spain
                [1] Valencia orgnameInstituto Valenciano de Oncología Spain
                [2] Valencia orgnameUniversidad de Valencia orgdiv1Facultad de Psicología orgdiv2Departamento de Psicología Social Spain
                Article
                S0212-16112020000100019 S0212-1611(20)03700100019
                10.20960/nh.02672
                debba652-d205-4532-aa18-e0875ca45cd2

                This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

                History
                : 08 November 2019
                : 15 May 2019
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 40, Pages: 10
                Product

                SciELO Spain

                Categories
                Trabajos Originales

                Cuidados paliativos,Cáncer,Feeding,Conflicto,Palliative care,Alimentación,Conflict,Cancer

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