Laetitia Ricci, Francisca Joly, Alfa Coly, Francis Guillemin, Didier Quilliot
{"title":"在短肠综合征患者家庭肠外营养中提出自主培训的重要问题:从患者角度的定性分析。","authors":"Laetitia Ricci, Francisca Joly, Alfa Coly, Francis Guillemin, Didier Quilliot","doi":"10.1038/s41430-024-01415-x","DOIUrl":null,"url":null,"abstract":"The standard treatment for short bowel syndrome is home parenteral nutrition. Patients’ strict adherence to protocols is essential to decrease the risk of complications such as infection or catheter thrombosis. Patient training can even result in complete autonomy in daily care. However, some patients cannot or do not want too much responsibility. However, doctors often encourage them to acquire these skills. Based on qualitative investigations with patients, we wanted to document issues of importance concerning perceptions of autonomy in daily care. Semistructured interviews were conducted with 13 adult patients treated by home parenteral nutrition using a maximum variation sampling strategy. We proceeded to a thematic analysis following an inductive approach. After achieving clinical management of symptoms, a good quality of life is within the realm of possibility for short bowel syndrome patients with home parenteral nutrition. In this context, achieving autonomy in home parenteral nutrition could be a lever to sustain patients’ quality of life by providing better life control. However, counterintuitively, not all patients aim at reducing constraints by reaching autonomy in home parenteral nutrition. First, they appreciate the social contact with the nurses, which is particularly true among patients who live alone. Second, they can feel safer with the nurse’s visits. Regaining freedom was the main motivation for patients in the training program and the main benefit for those who were already autonomous. Medical teams should consider patients’ health locus of control (internal or external) for disease management to support them concerning the choice of autonomy in daily care for parenteral nutrition.","PeriodicalId":11927,"journal":{"name":"European Journal of Clinical Nutrition","volume":null,"pages":null},"PeriodicalIF":3.6000,"publicationDate":"2024-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.nature.com/articles/s41430-024-01415-x.pdf","citationCount":"0","resultStr":"{\"title\":\"Important issues in proposing autonomy training in home parenteral nutrition for short bowel syndrome patients: a qualitative insight from the patients’ perspectives\",\"authors\":\"Laetitia Ricci, Francisca Joly, Alfa Coly, Francis Guillemin, Didier Quilliot\",\"doi\":\"10.1038/s41430-024-01415-x\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"The standard treatment for short bowel syndrome is home parenteral nutrition. Patients’ strict adherence to protocols is essential to decrease the risk of complications such as infection or catheter thrombosis. Patient training can even result in complete autonomy in daily care. However, some patients cannot or do not want too much responsibility. However, doctors often encourage them to acquire these skills. Based on qualitative investigations with patients, we wanted to document issues of importance concerning perceptions of autonomy in daily care. Semistructured interviews were conducted with 13 adult patients treated by home parenteral nutrition using a maximum variation sampling strategy. We proceeded to a thematic analysis following an inductive approach. After achieving clinical management of symptoms, a good quality of life is within the realm of possibility for short bowel syndrome patients with home parenteral nutrition. In this context, achieving autonomy in home parenteral nutrition could be a lever to sustain patients’ quality of life by providing better life control. However, counterintuitively, not all patients aim at reducing constraints by reaching autonomy in home parenteral nutrition. First, they appreciate the social contact with the nurses, which is particularly true among patients who live alone. Second, they can feel safer with the nurse’s visits. Regaining freedom was the main motivation for patients in the training program and the main benefit for those who were already autonomous. 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Important issues in proposing autonomy training in home parenteral nutrition for short bowel syndrome patients: a qualitative insight from the patients’ perspectives
The standard treatment for short bowel syndrome is home parenteral nutrition. Patients’ strict adherence to protocols is essential to decrease the risk of complications such as infection or catheter thrombosis. Patient training can even result in complete autonomy in daily care. However, some patients cannot or do not want too much responsibility. However, doctors often encourage them to acquire these skills. Based on qualitative investigations with patients, we wanted to document issues of importance concerning perceptions of autonomy in daily care. Semistructured interviews were conducted with 13 adult patients treated by home parenteral nutrition using a maximum variation sampling strategy. We proceeded to a thematic analysis following an inductive approach. After achieving clinical management of symptoms, a good quality of life is within the realm of possibility for short bowel syndrome patients with home parenteral nutrition. In this context, achieving autonomy in home parenteral nutrition could be a lever to sustain patients’ quality of life by providing better life control. However, counterintuitively, not all patients aim at reducing constraints by reaching autonomy in home parenteral nutrition. First, they appreciate the social contact with the nurses, which is particularly true among patients who live alone. Second, they can feel safer with the nurse’s visits. Regaining freedom was the main motivation for patients in the training program and the main benefit for those who were already autonomous. Medical teams should consider patients’ health locus of control (internal or external) for disease management to support them concerning the choice of autonomy in daily care for parenteral nutrition.
期刊介绍:
The European Journal of Clinical Nutrition (EJCN) is an international, peer-reviewed journal covering all aspects of human and clinical nutrition. The journal welcomes original research, reviews, case reports and brief communications based on clinical, metabolic and epidemiological studies that describe methodologies, mechanisms, associations and benefits of nutritional interventions for clinical disease and health promotion.
Topics of interest include but are not limited to:
Nutrition and Health (including climate and ecological aspects)
Metabolism & Metabolomics
Genomics and personalized strategies in nutrition
Nutrition during the early life cycle
Health issues and nutrition in the elderly
Phenotyping in clinical nutrition
Nutrition in acute and chronic diseases
The double burden of ''malnutrition'': Under-nutrition and Obesity
Prevention of Non Communicable Diseases (NCD)