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1.
Acta Gastroenterol Belg ; 87(2): 241-254, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39210756

RESUMEN

Background: There's a growing interest in blended food (BF) as an alternative to commercial food (CF) for tube-fed children. Thus, we investigated parental and medical experiences with BF as an option for tube feeding in children. Methods: In this cross-sectional study, all patients were already using BF, chosen by parents. In March 2022, all patients using BF provided consent and completed a questionnaire assessing their experiences. Medical data were collected retrospectively from patient charts, including biometric changes, dietary adjustments, and nutritional status. A non-validated parent satisfaction score was computed from 17 questions, rated on a scale from one to five. A score of ≥ 51 points, indicating an average score of > 3 per question, was deemed indicative of a positive parental experience with BF. Results: Nine children receiving BF were identified (median age: 4.7 years; weight: 14.9 kg; 66% male). All parents were satisfied with BF, reflected in the parent satisfaction score. Parents cited reduced feeding-related discomforts as the main reason for switching to BF. Weight (+0.3 SD) and length (+0.5 SD) showed positive changes. None discontinued BF, though modifications were made for five patients by the dietician. Nutritional deficiencies, mainly iron with or without zinc deficiency, were observed in four patients, with uncertain onset due to lack of pre-BF laboratory testing. Conclusions: In this small BF cohort overseen by an experienced multidisciplinary team, BF was well tolerated, resulting in high parental satisfaction and maintaining good nutritional status.


Asunto(s)
Nutrición Enteral , Padres , Humanos , Masculino , Femenino , Estudios Transversales , Padres/psicología , Preescolar , Nutrición Enteral/psicología , Niño , Estudios Retrospectivos , Investigación Cualitativa , Lactante , Encuestas y Cuestionarios , Estado Nutricional
2.
Nutrients ; 16(14)2024 Jul 18.
Artículo en Inglés | MEDLINE | ID: mdl-39064759

RESUMEN

AIM: After the COVID-19 pandemic, the need for intensive nutritional care in patients affected with anorexia nervosa (AN) increased. The use of NGT was often used to overcome renutrition difficulties. This systematic review explores the evidence concerning the psychological effects of an enteral nasogastric tube (NGT) feeding on patients with AN. METHODS: A systematic review following PRISMA guidelines was conducted on electronic databases, including papers from January 2010 to December 2023. The keywords used combined anorexia nervosa, NGT, nasogastric tube, and tube feeding, with MeSH terms. No language limit was imposed. Reviews were excluded from the search. RESULTS: A total of 241 studies matched the keywords. Nevertheless, 236 studies were excluded from the review because they did not match the inclusion criteria. A total of six studies met the inclusion criteria. Of these, three studies were case series, one was a quantitative study of follow up and one was a qualitative exploratory study. The included studies described the hospitalization of patients with AN treated with a nasogastric tube; among these, only one study focused directly on the psychological correlates of nasogastric tube treatment using interviews with patients and medical staff. Included studies suggest that NGT feeding, even if faced in the first instance with prejudices and fears by patients, parents, and staff, is useful not only for weight increase in treatment-resistant patients with AN, but also alleviates their stress from feeding and, in general, it is psychologically well tolerated. Nevertheless, recent in-depth research on the issue is lacking and the existing has a low methodological quality; thus, many psychological effects of NGT application remain underexplored. CONCLUSIONS: Although the results suggest good psychological tolerance of the device, the limited data available recommend that more attention should be addressed by the researchers to the psychological consequences of the use of NGT in the treatment of AN since it is a nutrition disorder with prominent psychological roots. Further studies are needed.


Asunto(s)
Anorexia Nerviosa , COVID-19 , Nutrición Enteral , Intubación Gastrointestinal , Humanos , Intubación Gastrointestinal/psicología , Anorexia Nerviosa/psicología , Anorexia Nerviosa/terapia , Nutrición Enteral/psicología , COVID-19/psicología , Femenino , SARS-CoV-2 , Adulto
3.
J Hum Nutr Diet ; 37(4): 1050-1060, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38778633

RESUMEN

BACKGROUND: Guidelines recommend enteral feeding via gastrostomy should be considered for adult survivors of stroke with dysphagia who cannot eat or drink sufficiently for >4 weeks. Many people continue long-term tube-feeding via this route in the community where healthcare professionals contribute to their care and nutritional management, although little is known about their experiences of or attitudes towards enteral feeding in this situation. The present study aimed to explore the experiences and attitudes of healthcare professionals working with this patient group. METHODS: Healthcare professionals were invited to complete a questionnaire devised for the study which comprised closed and open questions about tube-feeding including their patients' participation in feeding processes and mealtimes and how these might be improved. Responses to closed questions were analysed descriptively and free-text responses analysed using thematic analysis. RESULTS: Fifty-seven participants met the inclusion criteria. They identified patients' quality of life (77% of respondents) and nutritional support (75%) as the most important aspects of tube-feeding. Good communication and training with healthcare teams and carers were considered important. Their patients' participation in tube-feed administration and mealtime involvement were described as variable and potentially beneficial, but both were related to patients' choice and health impairment. Blended tube-feeding was considered an option by 89% provided practical and safety conditions were met. CONCLUSIONS: Participants' experiences of and attitudes towards tube feeding in adults living with stroke in the community in the sample in the present study are varied and focussed on individual patients' needs, safety and professional standards.


Asunto(s)
Actitud del Personal de Salud , Nutrición Enteral , Accidente Cerebrovascular , Humanos , Nutrición Enteral/métodos , Nutrición Enteral/psicología , Masculino , Femenino , Encuestas y Cuestionarios , Accidente Cerebrovascular/psicología , Accidente Cerebrovascular/terapia , Accidente Cerebrovascular/complicaciones , Persona de Mediana Edad , Adulto , Calidad de Vida , Anciano , Trastornos de Deglución/terapia , Trastornos de Deglución/psicología , Trastornos de Deglución/etiología , Personal de Salud/psicología , Rehabilitación de Accidente Cerebrovascular/métodos , Rehabilitación de Accidente Cerebrovascular/psicología , Comidas/psicología
4.
J Cyst Fibros ; 23(5): 1000-1006, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38320875

RESUMEN

BACKGROUND: Nutritional challenges are common in early CF care and stressful for caregivers of children with CF (cwCF) to navigate. Gastrostomy tube (G-tube) placement can improve weight gain, however the decision to proceed with placement is personalized and preference-sensitive. Little is known about the experiences of caregivers of cwCF and the G-tube decision-making process. OBJECTIVES: The present study used a qualitative approach to explore the perceptions and experiences of caregivers of cwCF with G-tube introductions and recommendations, as well as factors influencing G-tube decision-making. METHODS: Caregivers of cwCF aged ≤ 10 years completed audio-taped, semi-structured interviews describing their experiences with G-tube placement discussions. Interviews were transcribed and two independent researchers coded the transcripts and conducted content and thematic analysis using an inductive approach. RESULTS: Participants included 43 caregivers, 84 % were mothers (36/43). CwCF had a mean age of 4 years (SD=2.6), 84 % were White (36/43), and 60 % reported weights below <50th percentile (26/43). All caregivers knew about G-tubes, 44 % (19/43) were recommended a G-tube and 35 % (15/43) had a G-tube placed. Major findings included descriptions of the stages of G-tube decision-making from a heads up, to the game plan, to making a first difficult decision and finally living with the decision to pursue G-tube placement. CONCLUSION: G-tube decision-making is an emotional and personalized journey for caregivers of cwCF. Efforts to explore the values and priorities of caregivers is imperative to supporting families making difficult decisions in CF care.


Asunto(s)
Cuidadores , Fibrosis Quística , Toma de Decisiones , Nutrición Enteral , Gastrostomía , Investigación Cualitativa , Humanos , Gastrostomía/psicología , Gastrostomía/métodos , Fibrosis Quística/psicología , Fibrosis Quística/terapia , Cuidadores/psicología , Femenino , Masculino , Preescolar , Niño , Nutrición Enteral/psicología , Nutrición Enteral/métodos , Adulto
5.
Prax Kinderpsychol Kinderpsychiatr ; 72(6): 529-551, 2023 Oct.
Artículo en Alemán | MEDLINE | ID: mdl-37830885

RESUMEN

Feeding Tube Dependency is a constant increasing perinatal mental health condition, with estimated 350 new cases per year in Germany.The early onset feeding tube dependency is the consequence of a generalized food aversion. To establish an evidence-based nationwide treatment plan, relevant research from the past twenty years were narratively reviewed. Feeding tube dependency is an international increasingmental health condition, with a high symptom persistence and a low spontaneous remission. The generalized food aversion would prevent the transition to oral feeding.The treatment protocols, supported by the German Health System, based on low-frequency individual treatment and intensive inpatient treatments are not supported by the most recent evidence. In treatment outcome research more promising and effective programs can be distinguished from ineffective programs. As a result, treatment which are designed as intensive treatment, home-based or inpatient and are psychodynamicbased are most effective. Day-clinic and behavioral modification programs are not or low in treatment effectiveness.The German Health System approach to assist families with feeding tube dependency is not evidence-based. A new structure of treatment is imperatively required.


Asunto(s)
Nutrición Enteral , Trastornos de Alimentación y de la Ingestión de Alimentos , Femenino , Embarazo , Humanos , Nutrición Enteral/métodos , Nutrición Enteral/psicología , Resultado del Tratamiento , Alemania
6.
Child Care Health Dev ; 49(4): 740-749, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-36478601

RESUMEN

BACKGROUND: Persistent enteral tube feeding beyond the point of medical and/or physical necessity provides important nutrition to a child but may have implications for their development, gastrointestinal tract and quality of life. Tube dependency can affect parent-child relationships and sibling and family dynamics and place additional medical demands upon parents. It is therefore important to transition children from tube to oral eating and drinking as soon as is medically safe to do so. Tube weaning requires a skilled team to support the transition to oral intake; however, access to experienced teams is inconsistent. Without transparent discussions with their treating teams, many parents are left to navigate tube weaning options independently. METHODS: Fourteen parents were interviewed using semi-structured interviews. We explored the experiences of parents across their child's progression towards oral feeding, from the decision-making process to undertaking an intensive multi-disciplinary tube weaning programme. Thematic analysis of the parents' stories shaped the development of seven themes. RESULTS: Parents were unaware that tube weaning would be required and how that would be facilitated. They expressed a strong belief that their child could learn to eat-if afforded an opportunity. Furthermore, parents are prepared to disengage from current services if they feel they are not respected members of their child's therapeutic team. Three key learnings were identified relating to the need for tube exit plans, parents as key team members and parents as change agents. CONCLUSIONS: Parenting a tube-fed child, initiating and engaging in tube weaning, is a stressful and emotional journey. However, by establishing care partnerships, parents are willing to put trust in a process if provided with options and afforded autonomy, empowerment, acknowledgement and relevant support.


Asunto(s)
Padres , Calidad de Vida , Humanos , Padres/psicología , Nutrición Enteral/psicología , Responsabilidad Parental/psicología , Emociones
7.
Disabil Health J ; 15(2): 101261, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-35022149

RESUMEN

BACKGROUND: Tube feeding in children has a severe psychosocial impact on children and their families. Parents also feel that they have limited communication with healthcare professionals (HCPs) about decision-making and the implications of tube feeding. OBJECTIVE: This study focussed on the parents' experiences and expectations about tube feeding of children and a solution to improve the management and communication of it. METHODS: We applied a design thinking method in two parts. First, focus groups and individual interviews were conducted with parents of children aged 0-10 years who are or had been tube fed and HCPs. Thereafter, two sounding boards with HCPs and parents were convened to discuss improvements in the management of tube feeding. RESULTS: In total, 17 parents participated in the study. Two main topics derived from the focus groups and interviews: psychosocial impact and communication with HCPs. The sounding boards (five HCPs and two parents) divided the challenges of tube feeding into three stages: the moment tube feeding is considered, the insertion of the tube in the hospital, and transfer to the domestic environment and follow-up. Interview topics were used to develop a communication sheet to support the decision process of tube feeding. CONCLUSIONS: The empowerment of parents in the process of tube feeding is important. More attention should be paid to alternatives, consequences, and planning for the long term. The developed communication sheet offers suggestions for issues to discuss and could support communication between parents and HCPs about tube feeding.


Asunto(s)
Personas con Discapacidad , Nutrición Enteral , Niño , Preescolar , Toma de Decisiones , Atención a la Salud , Nutrición Enteral/psicología , Personal de Salud/psicología , Humanos , Lactante , Recién Nacido , Padres/psicología
8.
Nutrients ; 13(12)2021 Dec 19.
Artículo en Inglés | MEDLINE | ID: mdl-34960103

RESUMEN

Most studies confirm the beneficial effects of enteral nutrition on the quality of life, but some studies indicate an inverse association and its detrimental impacts. However, there are insufficient data on the effects of enteral nutrition on the quality of life of cancer patients. This systematic review aimed to describe the influence of applied enteral nutrition on the quality of life of cancer patients, based on the results of randomized controlled trials. It was registered in the PROSPERO database (CRD42021261226) and conducted based on the PRISMA guidelines. The searching procedure was conducted using the PubMed and Web of Science databases, as well as Cochrane Library, and it included studies published until June 2021. It was conducted to select randomized controlled trials assessing the influence of enteral nutrition (compared with the other model of nutrition) on the quality of life of cancer patients. A general number of 761 records were screened and a final number of 16 studies were included in the systematic review. The studies were included and assessed by two independent researchers, while the risk of bias was analyzed using the Newcastle-Ottawa Scale (NOS). Studies compared patients treated with and without enteral nutrition, patients treated with various methods of enteral nutrition or with enteral diets of various content, as well as patients treated with enteral and parenteral nutrition. Within the included studies, the majority were conducted in patients with cancers located in various parts of the body, or diverse areas within the gastrointestinal system, while some studies were conducted in specific populations of patients with a defined cancer location-esophagus, stomach, or ovary. The duration of applied enteral nutrition within the included studies was diversified-from two weeks or less to half a year or even more. The vast majority of studies used well-known and validated tools to assess the quality of life, either developed for a specific group of head/neck, esophagus/stomach, and ovary cancer patients or developed for more general patient populations. Most studies concerning patients treated with and without enteral nutrition supported applying enteral nutrition, which was concluded in seven studies out of ten (including four studies with a low risk of bias). The other important observations to be emphasized-formulated based on the studies with a low risk of bias-presented the role of oral supportive nutrition guided by a dietitian, as well as the beneficial role of enteral and parenteral nutrition, combined. In spite of a relatively low number of randomized controlled trials assessing the influence of enteral nutrition on the quality of life of cancer patients, which should be considered as a limitation, the results were promising. Most studies supported the positive influence of enteral nutrition on the quality of life, either assessed based on the psychological measures of the quality of life or by considering the other potential determinants (e.g., malnutrition, complications, etc.). Taking this into account, enteral nutrition should be applied whenever possible, both to prevent and treat malnutrition in cancer patients. However, considering the limited number of studies conducted so far, further research conducted in homogenic populations of patients is necessary.


Asunto(s)
Nutrición Enteral/psicología , Neoplasias/psicología , Neoplasias/terapia , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Femenino , Humanos , Masculino , Desnutrición/etiología , Desnutrición/prevención & control , Neoplasias/complicaciones , Factores de Tiempo
9.
Dev Med Child Neurol ; 63(9): 1099-1106, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-33792913

RESUMEN

AIM: To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food). METHOD: Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups. Children (2-18y) represented included those on formula (n=11), blended-food (n=7), and mixed (n=2) diets. All had been tube-fed for at least 6 months. Neurological, genetic, and metabolic conditions were represented. RESULTS: Participants identified a range of children's outcomes relevant to a gastrostomy, including physical health, gastrointestinal symptoms, sleep, and time spent feeding. The children described experiences of exclusion caused by being tube-fed. Time, sleep, and emotional health were regarded as most salient to understanding parents' gastrostomy outcomes. Participants believed type of diet would most likely effect gastrointestinal symptoms, time spent feeding, sleep, and physical health. INTERPRETATION: Findings indicate a number of refinements to, and allow further specification of, the current 'initial' core outcome set for tube-fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed. What this paper adds Sleep is a key outcome for children and parents. Gastrointestinal symptoms and physical health were regarded as outcomes most likely to be affected by type of diet. Well-being and participation were identified as key distal outcomes. Gastrostomies are complex interventions. Further specification of the core outcome set is possible.


Asunto(s)
Dieta/métodos , Nutrición Enteral/psicología , Gastrostomía/psicología , Padres/psicología , Investigación Cualitativa , Adolescente , Niño , Preescolar , Dieta/efectos adversos , Dieta/psicología , Nutrición Enteral/instrumentación , Femenino , Alimentos , Personal de Salud , Humanos , Masculino , Calidad de Vida
10.
J Hum Nutr Diet ; 34(1): 33-41, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-32394444

RESUMEN

BACKGROUND: The present study reports a case series where three adolescent patients with anorexia nervosa (AN) (two cases with typical AN and one case atypical AN) received nasogastric tube feeding under restraint in line with new dietetic clinical guidelines. METHODS: Three cases were chosen out of 61 admitted patients over the period of 1 year who were fed via a nasogastric tube under restraint in a specialist eating disorders unit for children and adolescents. These cases were chosen to highlight a range of clinical scenarios that clinicians may encounter. They also represent clinical scenarios where decisions to feed patients under restraint were rendered more complex by additional concerns. RESULTS: Despite the complexity of the cases, all patients tolerated the feeds well and were discharged home eating solid food. CONCLUSIONS: The decision to feed a patient against their will is never an easy one. Sadly, there have been some recent high-profile deaths of adult patients on medical wards where treatment opinion was not considered, and the patient received no or minimal nutrition when awaiting specialist treatment. Dietetic guidelines have been published to help inform clinicians for whom feeding under restraint may be out of the scope of their daily practice. This case series highlights clinical scenarios that illustrate the utility of the guidelines, which we hope will support clinicians when making, potentially lifesaving decisions in children and young people.


Asunto(s)
Anorexia Nerviosa/terapia , Dietética/normas , Nutrición Enteral/psicología , Intubación Gastrointestinal/psicología , Guías de Práctica Clínica como Asunto , Adolescente , Salud del Adolescente , Niño , Femenino , Humanos , Masculino
11.
J Hum Nutr Diet ; 33(6): 752-757, 2020 12.
Artículo en Inglés | MEDLINE | ID: mdl-32627898

RESUMEN

BACKGROUND: It is probable that psychosocial factors predict adherence to exclusive enteral nutrition (EEN). Conscientiousness is an intrapersonal factor associated with greater medication adherence and healthy eating behaviours. This sub-study aimed to determine whether adherence to EEN was associated with conscientiousness. METHODS: Two groups of adults aged 16-40 years, were recruited to use EEN. Adults with active Crohn's disease used either EEN for 8 weeks or 2 weeks of EEN followed by 6 weeks of partial enteral nutrition (PEN). A control group of healthy adults used EEN for 2 weeks. Participants who reported eating food during EEN, ate more than one meal per day during PEN, or could not initiate or tolerate the oral nutritional supplements were defined as non-adherent. Conscientiousness was measured using the conscientiousness subset of the Big Five Inventory. RESULTS: Thirty-eight patients with active Crohn's disease (mean age 24.8 years) and 21 healthy adults (mean age 27.3 years) completed the conscientiousness questionnaire. In the Crohn's disease group, 23 (59%) completed and adhered to the treatments compared to 17 (81%) healthy adults; their conscientiousness scores were similar. Adherence and completion by the Crohn's disease group were associated with a greater mean conscientiousness score 35.57 (95% confidence interval = 32.88-38.25) compared to 30.13 (95% confidence interval = 26.53-33.73) in the non-adherent Crohn's disease group (P = 0.014). CONCLUSIONS: Conscientiousness was associated with treatment adherence. EEN can be a cognitively and emotionally demanding treatment for active adults with Crohn's disease; thus, considering personality traits may help determine suitable candidates.


Asunto(s)
Conciencia , Enfermedad de Crohn/psicología , Enfermedad de Crohn/terapia , Nutrición Enteral/psicología , Cooperación del Paciente/psicología , Adolescente , Adulto , Femenino , Humanos , Masculino , Personalidad , Proyectos Piloto , Encuestas y Cuestionarios , Adulto Joven
12.
J Am Geriatr Soc ; 68(10): 2264-2269, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32559331

RESUMEN

BACKGROUND: Evidence suggests that tube feeding persons with severe dementia (PWSDs) does not improve survival or quality of life, yet many continue to be tube fed. Reasons why caregivers choose to do so are not entirely understood. OBJECTIVE: To understand what shapes caregiver preference toward nasogastric (NG) tube feeding for community-dwelling PWSDs. DESIGN: A qualitative study that employed semistructured interviews. SETTING AND SUBJECTS: Primary informal caregivers of community-dwelling persons diagnosed with dementia Functional Assessment Staging Test (FAST) stage 7 in Singapore. METHODS: Caregivers participated in qualitative in-depth interviews during which their preferences toward NG tube feeding of PWSDs were explored. We used principles of reflexive thematic analysis to compare caregivers who expressed a preference for NG tube feeding with those who did not prefer it. RESULTS: We interviewed 27 caregivers of PWSDs. Most caregivers, 67% (n = 18), expressed a preference for tube feeding. We conceptualized four main themes describing what shapes caregiver preference toward NG tube feeding: (1) willingness to use tube feeding to prolong life at the expense of suffering, (2) deference to healthcare provider's (HCP's) recommendation, (3) caregiver knowledge of alternatives to tube feeding, and (4) caregivers' internal and external conflicts. CONCLUSION: Results from this study highlight the need for new inclusive approaches to shared decision-making between HCPs and caregivers regarding tube feeding for community-dwelling PWSDs. J Am Geriatr Soc 68:2264-2269, 2020.


Asunto(s)
Cuidadores/psicología , Nutrición Enteral/psicología , Vida Independiente/psicología , Intubación Gastrointestinal/psicología , Calidad de Vida , Anciano , Anciano de 80 o más Años , Toma de Decisiones , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Prioridad del Paciente/psicología , Investigación Cualitativa , Singapur
13.
J Pediatr ; 223: 73-80.e2, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-32532645

RESUMEN

OBJECTIVE: To assess characteristics and outcomes of young children receiving intensive multidisciplinary intervention for chronic food refusal and feeding tube dependence. STUDY DESIGN: We conducted a retrospective study of consecutive patients (birth to age 21 years) admitted to an intensive multidisciplinary intervention program over a 5-year period (June 2014-June 2019). Inclusion criteria required dependence on enteral feeding, inadequate oral intake, and medical stability to permit tube weaning. Treatment combined behavioral intervention and parent training with nutrition therapy, oral-motor therapy, and medical oversight. Data extraction followed a systematic protocol; outcomes included anthropometric measures, changes in oral intake, and percentage of patients fully weaned from tube feeding. RESULTS: Of 229 patients admitted during the 5-year period, 83 met the entry criteria; 81 completed intervention (98%) and provided outcome data (46 males, 35 females; age range, 10-230 months). All patients had complex medical, behavioral, and/or developmental histories with longstanding feeding problems (median duration, 33 months). At discharge, oral intake improved by 70.5%, and 27 patients (33%) completely weaned from tube feeding. Weight gain (mean, 0.39 ± 1 kg) was observed. Treatment gains continued following discharge, with 58 patients (72%) weaned from tube feeding at follow-up. CONCLUSIONS: Our findings support the effectiveness of our intensive multidisciplinary intervention model in promoting oral intake and reducing dependence on tube feeding in young children with chronic food refusal. Further research on the generalizability of this intensive multidisciplinary intervention approach to other specialized treatment settings and/or feeding/eating disorder subtypes is warranted.


Asunto(s)
Terapia Conductista/métodos , Nutrición Enteral/efectos adversos , Conducta Alimentaria/psicología , Trastornos de Ingestión y Alimentación en la Niñez/terapia , Niño , Preescolar , Nutrición Enteral/psicología , Trastornos de Ingestión y Alimentación en la Niñez/psicología , Femenino , Humanos , Masculino , Padres/psicología , Estudios Retrospectivos
14.
Rev Bras Enferm ; 73(2): e20180360, 2020.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-32236363

RESUMEN

OBJECTIVES: to understand the psychosocial repercussions experienced by caregiving parents, resulting from care for the child with dysphagic cleft lip and palate. METHODS: qualitative study, developed in a tertiary hospital in September 2016. The sample defined by theoretical saturation consisted of seven mothers. Data collection was performed by unstructured interview, being audio-recorded and fully transcribed. Symbolic Interactionism was used as theoretical framework, and Thematic Content Analysis as methodological framework. RESULTS: the following themes emerged: diagnosisimpact and coping; coping with overload and stress; interaction between caregivers as an acceptance and coping strategy; impact on family and social life of caregivers; and curiosity coping, and family and community prejudice. FINAL CONSIDERATIONS: despite the physical and emotional overload, the mother figure plays the main and determining role in care, reflecting the complexity of care.


Asunto(s)
Nutrición Enteral/psicología , Responsabilidad Parental/psicología , Adaptación Psicológica , Adulto , Cuidadores/psicología , Trastornos de Deglución/dietoterapia , Trastornos de Deglución/psicología , Nutrición Enteral/enfermería , Femenino , Humanos , Lactante , Entrevistas como Asunto/métodos , Masculino , Padres/psicología , Investigación Cualitativa , Encuestas y Cuestionarios
15.
Appetite ; 144: 104448, 2020 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-31525417

RESUMEN

In studies on resistance and protest, empirical research tends to concentrate on collective forms of action, those organised within social movements or by resistance groups. As such, research into the protest tactic of hunger strikes suffers from the same ailment. While there is ample historical study into hunger strikes by the suffragettes or the IRA, the actions of individuals without any connection to political movements have mostly been left unnoticed - although they tended to outnumber the former, especially in prisons where hunger strikes are in a way a measure of last resort. This paper investigates hunger strikes of individual detainees in Belgian prisons during the interwar period, a time of transformation in the penitentiary system and changings views on crime and the criminal. Through a critical reading of prisoner files of the prison of Forest, this study analyses the motivations of prisoners to start a hunger strike and the reactions and sanctions of the prison authorities. Findings reveal that going on a hunger strike, or simply not eating, was sufficient to label prisoners as mentally ill and transfer them into the psychiatric ward. If the prisoner could not be convinced to eat, the hunger strike was almost always terminated by forcibly feeding the detainee. As this was done to prisoners whose life was not in danger and with the brutal use of rectal feeding, I argue that force feeding was also a means to discipline detainees.


Asunto(s)
Disentimientos y Disputas , Ayuno/psicología , Prisioneros/psicología , Adulto , Bélgica , Nutrición Enteral/psicología , Humanos , Masculino , Motivación , Prisiones
16.
Dysphagia ; 35(4): 616-629, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-31616996

RESUMEN

Dementia is reported to be the overall fourth leading non-communicable cause of death, and accounted for almost two million deaths worldwide (3.5% of the total number) in 2016. Dysphagia and aspiration pneumonia secondary to dementia are the two most serious comorbidities. As the dementia progresses and the severity of an individual's dysphagia increases, the question of whether to commence an artificial nutrition or allow a person to continue to eat and drink orally is raised, both having associated risks. The purpose of this study was to establish current perspectives regarding the method(s) of feeding being used or preferred, once an individual with dementia has reached the end stages of the disease and is unable to swallow safely and efficiently, and ascertain the reasons for the choice made. An online search was completed, and articles published in English available up to April 2018 were considered for inclusion. Hand searching inclusive of the grey literature was also completed to obtain the maximum amount of relevant information. The total yield numbered 1888 studies, and following exclusions, full text studies deemed suitable for review amounted to 18. Themes were generated during the review process, relevant information was extracted, and six main themes emerged: feeding method; aspiration pneumonia; mortality; malnutrition; ethical considerations, and religion. The review indicated that the preferred method of feeding in end-stage dementia was artificial nutrition, in most cases via percutaneous endoscopic gastrostomy. However, despite the perceived advantage of providing artificial nutrition, no convincing evidence was found to support the use of tube feeding in end-stage dementia. In fact, initiating tube feeding was considered to have adverse effects such as aspiration pneumonia, malnutrition and expedited death. Longitudinal research regarding current practice is therefore indicated to establish an optimal procedure for individuals with end-stage dementia and dysphagia.


Asunto(s)
Trastornos de Deglución/psicología , Trastornos de Deglución/terapia , Demencia/psicología , Métodos de Alimentación/psicología , Prioridad del Paciente , Anciano , Anciano de 80 o más Años , Toma de Decisiones , Trastornos de Deglución/mortalidad , Demencia/complicaciones , Demencia/mortalidad , Nutrición Enteral/mortalidad , Nutrición Enteral/psicología , Métodos de Alimentación/mortalidad , Femenino , Humanos , Masculino , Desnutrición/etiología , Desnutrición/psicología , Desnutrición/terapia , Neumonía por Aspiración/etiología , Neumonía por Aspiración/mortalidad
17.
Nutr Hosp ; 37(1): 137-146, 2020 Feb 17.
Artículo en Español | MEDLINE | ID: mdl-31782307

RESUMEN

INTRODUCTION: 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.


INTRODUCCIÓN: 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.


Asunto(s)
Dieta , Conflicto Familiar , Cuidados Paliativos , Adaptación Psicológica , Anciano , Anciano de 80 o más Años , Apetito , Cuidadores/psicología , Estudios Transversales , Nutrición Enteral/psicología , Conflicto Familiar/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Neoplasias/terapia , Grupo de Atención al Paciente , Participación del Paciente , Prioridad del Paciente , Pronóstico
18.
J Hum Nutr Diet ; 33(4): 538-549, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-31793128

RESUMEN

BACKGROUND: Home enteral feeding (HEF) may have a wider impact on peoples' daily lives beyond influencing their nutritional and clinical status. This metasynthesis aimed to determine the impact of HEF on peoples' daily lives. METHODS: Qualitative studies were included with adults, who had been diagnosed with head and neck cancer and had finished their cancer treatment, with a feeding tube in place. Medline, PubMed and Cinahl were searched (August 2009 to August 2019). Thematic synthesis was conducted to interpret findings from the included studies. The 'Confidence in the Evidence from Reviews of Qualitative research' (GRADE-CERQual) approach was used to assess the level of confidence associated with each review finding. RESULTS: Seven qualitative studies met the eligibility criteria. Four overarching themes were identified. 'Loss of life as they once knew it' encompassed loss of normality. 'Developing personal coping strategies works towards restoring a sense of normality' encapsulated active adjustment and acceptance of the feeding tube. 'Navigating the hurdles when transitioning back to eating' comprised the trials and tribulations of returning to oral intake. Overall, participants recognised that they could not have managed without the feeding tube and this is encapsulated in 'Feeding tube valued'. CONCLUSIONS: In many cases, initial feelings of change and loss as a result of HEF were replaced with empowerment, adaptation and acceptance following a period of adjustment. Despite the challenges associated with HEF, participants acknowledged its purpose as being functional, as well as reassuring. Future research should explore barriers and facilitators to self-management and patient empowerment amongst those receiving HEF.


Asunto(s)
Nutrición Enteral/psicología , Neoplasias de Cabeza y Cuello/psicología , Neoplasias de Cabeza y Cuello/terapia , Servicios de Atención de Salud a Domicilio , Aceptación de la Atención de Salud/psicología , Adulto , Anciano , Costo de Enfermedad , Nutrición Enteral/métodos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Calidad de Vida/psicología
19.
J Transcult Nurs ; 31(1): 13-21, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-30810098

RESUMEN

Introduction: Standard advance care planning practice is yet to be established in Mainland, China, and little is known about feeding tube preferences among Chinese nursing home residents. The purpose of the study was to examine preferences for feeding tube use and its predictors among frail and cognitively competent nursing home residents in Wuhan, China. Method: A cross-sectional sample of 682 nursing home residents were interviewed face-to-face using a structured questionnaire from 2012 to 2014. Results: A total of 54.5% of participants would accept feeding tube. Participants who reported greater quality of life (odds ratio [OR] = 2.67), having health insurance (OR = 2.09) were more willing to accept feeding tube. Participants with greater impairment in physical health (OR = 0.94) were less willing to accept it. Discussion: Health care professionals need to routinely assess nursing home residents' feeding tube preferences. It is imperative to consider sociocultural perspectives in understanding Chinese older adults' decision making for end-of-life care.


Asunto(s)
Comportamiento del Consumidor/estadística & datos numéricos , Nutrición Enteral/normas , Anciano , Anciano de 80 o más Años , China , Estudios Transversales , Nutrición Enteral/efectos adversos , Nutrición Enteral/psicología , Femenino , Humanos , Masculino , Casas de Salud/organización & administración , Casas de Salud/estadística & datos numéricos , Encuestas y Cuestionarios
20.
Nutr Clin Pract ; 35(4): 634-641, 2020 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-30729569

RESUMEN

BACKGROUND: Current guidelines discourage tube-feeding older adults with advanced dementia (AD), as this practice does not improve nutrition status or survival and decreases quality of life in these patients. Because registered dietitians (RDs) often provide feeding recommendations for patients with AD, this study aimed to identify factors that influenced RDs' feeding tube recommendations for older adults with AD. METHODS: A random sample of RDs who work with older adults in the United States completed a validated, electronic survey. Logistic regression analysis was used to identify factors related to the likelihood of RDs recommending a feeding tube for patients with AD. Independent variables included participant demographics and the 6 subscales of the Attitudes Toward Tube-Feeding in Advanced Dementia Questionnaire, which measured individual and environmental influences on RDs' recommendations. RESULTS: Among the 662 RDs who responded, 72.2% were unlikely to recommend a feeding tube in patients with AD, and 15.4% were likely to do so (with the remaining being "neutral"). Factors associated with avoiding recommending a feeding tube include significantly higher total knowledge [odds ratio (OR) = 1.47, 95% CI (1.30, 1.66)] and personal values scores [OR = 7.51, 95% CI (3.96, 14.24)] and employment in long-term care settings [OR 3.29, 95% CI (1.38, 7.80)]. CONCLUSION: In this survey, most RDs were likely to make recommendations that are consistent with current guidelines for tube feeding patients with AD. RDs who work outside the long-term care setting may benefit from additional training. Future research is needed to understand how personal values may influence recommendations.


Asunto(s)
Demencia/terapia , Nutrición Enteral/psicología , Conocimientos, Actitudes y Práctica en Salud , Nutricionistas/psicología , Valores Sociales , Lugar de Trabajo/psicología , Adulto , Actitud del Personal de Salud , Nutrición Enteral/normas , Femenino , Encuestas de Atención de la Salud , Humanos , Masculino , Persona de Mediana Edad , Oportunidad Relativa , Estados Unidos
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