[The Need of Evidence-Based Treatment of Early-Onset Feeding Tube Dependency: A Pico- Framework Based Analytic Review of Clinical Features and Treatment of Feeding Tube Dependency]. / Zur Notwendigkeit evidenzbasierter Behandlung frühkindliche Sondendependenz ­ Ein Review zur Analyse von Störungsbild und Behandlung basierend auf dem PICO-Schema.

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.

Parents' experiences of their child's transition from tube to oral feeding during an intensive intervention programme.

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.

How to support parents and healthcare professionals in the decision-making process of tube feeding in children?

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.

Quality of Life of Cancer Patients Receiving Enteral Nutrition: A Systematic Review of Randomized Controlled Trials.

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.

Outcomes for gastrostomy-fed children and their parents: qualitative findings from the 'Your Tube' study.

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.

Nasogastric tube feeding in line with new dietetic guidelines for the treatment of anorexia nervosa in a specialist children and adolescent inpatient unit: a case series.

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.

Adherence to exclusive enteral nutrition by adults with active Crohn's disease is associated with conscientiousness personality trait: a sub-study.

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.

Caregiver Preference for Tube Feeding in Community-Dwelling Persons with Severe Dementia.

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.

Intensive Multidisciplinary Intervention for Young Children with Feeding Tube Dependence and Chronic Food Refusal: An Electronic Health Record Review.

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.

Parental care for infants with feeding tube: psychosocial repercussions.

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.

Food refusal as a protest tool. Hunger strikes in Belgian prisons during the interwar period.

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.

Preferences for Feeding Tube Use and Their Determinants Among Cognitively Intact Nursing Home Residents in Wuhan, China: A Cross-Sectional Study.

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.

Factors Contributing to the Preferred Method of Feeding in End-Stage Dementia: A Scoping Review.

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.

Practitioner Knowledge, Personal Values, and Work Setting Influence Registered Dietitians' Feeding Tube Recommendations for Patients With Advanced Dementia.

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.

[Feeding as a source of conflict between patient and family in palliative care]. / La alimentación como fuente de conflicto entre paciente y familia en cuidados paliativos.

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.

The impact of home enteral feeding on the daily lives of people with head and neck cancer: a metasynthesis of qualitative studies.

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.

Parental care for infants with feeding tube: psychosocial repercussions / Cuidado de los padres para lactantes con sondas de alimentación: repercusiones psicosociales / O cuidado prestado por pais a lactentes com sonda alimentadora: repercussões psicossociais

ABSTRACT 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.

RESUMEN Objetivos: comprender las repercusiones psicosociales experimentadas por los padres cuidadores, como resultado del cuidado del niño con labio leporino y paladar hendido disfagico. Métodos: estudio cualitativo, desarrollado en un hospital terciario en septiembre de 2016. La muestra definida por saturación teórica consistió en siete madres. La recopilación de datos se realizó mediante entrevista no estructurada, grabada en audio y totalmente transcrita. Se utilizó como referencia teórica el interaccionismo simbólico y como referencia metodológica, el análisis de contenido temático. Resultados: se aclararon cinco categorías: impacto y afrontamiento del diagnóstico; hacer frente a la sobrecarga y el estrés; interacción entre cuidadores como una estrategia de aceptación y afrontamiento; impacto en la vida familiar y social de los cuidadores; y afrontamiento de curiosidad y prejuicio familiar y comunitario. Consideraciones finales: a pesar de la sobrecarga física y emocional, la figura materna desempeña el papel principal y determinante en la atención, lo que refleja la complejidad del proceso de lo cuidado.

RESUMO Objetivos: compreender as repercussões psicossociais vivenciadas por pais cuidadores, decorrentes do cuidado do filho com fissura labiopalatina, disfágico e em uso de sonda alimentadora. Métodos: estudo qualitativo, desenvolvido em um hospital terciário em setembro de 2016. A amostra definida por saturação teórica constou sete mães. A coleta de dados foi realizada por entrevista não estruturada, audiogravada e transcrita na íntegra. Utilizou-se como referencial teórico o Interacionismo Simbólico e como referencial metodológico, a Análise de Conteúdo Temática. Resultados: foram elucidadas cinco categorias: impacto e enfrentamento do diagnóstico; enfrentamento da sobrecarga e o estresse; interação entre cuidadores como estratégia de aceitação e enfrentamento; impacto no convívio familiar e social dos cuidadores; e enfrentamento da curiosidade e o preconceito familiar e comunitário. Considerações finais: apesar da sobrecarga física e emocional, a figura materna exerce o papel principal e determinante no cuidado, refletindo a complexidade do processo de cuidar.

Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey.

We aimed to measure the health-related quality of life (HRQoL) of children with neurological impairment (NI) on home enteral nutrition (HEN). An original survey among the caregivers of NI children on HEN for ≥ 12 months followed in three Italian centers (Messina, Como and Varese) was carried out between January 2013 and September 2018. The questionnaire was made up of 12 issues focused on the frequency with which certain situations associated with HEN are perceived, and grouped into physical and psychological/social dimensions. The results were analyzed statistically according to the age of the children, underlying disease, and the HEN programs' duration. In total, 80 caregivers were approached, and 75 surveys were completed (an overall response rate of 93.7%). Nearly all the caregivers reported a satisfying HRQoL, ranging from acceptable (n = 6, 8%), to good (n = 22, 29.3%), to excellent (n = 47, 62.7%). A significant correlation was found between HRQoL and underlying NI-associated disease (p = 0.001). Our data showed that HEN positively affects the QoL of NI children and their caregivers. This should encourage healthcare providers to consider this nutritional intervention early in the approach to this group of patients, in order to prevent or reduce QoL impairment.

The impact of living with home enteral feeding: perspectives of people who have had a diagnosis of head and neck cancer.

BACKGROUND: The number of people with head and neck cancer who are home enterally fed continues to grow each year. Insertion of a feeding tube is common place in these patients and is considered to have a detrimental effect on quality of life. The present study aimed to investigate the daily impact of home enteral feeding (HEF) from the perspective of people who have had a diagnosis of head and neck cancer. METHODS: The methodology aligned with interpretative phenomenology analysis. People who were home enterally fed, with head and neck cancer, and aged ≥18 years were recruited. Data were collected using semi-structured interviews and analysis focused on what the daily impact of HEF meant for participants. RESULTS: Data saturation was achieved after interviewing 15 participants. Five cluster themes were identified. 'Deviation from the norm' encompassed change and loss of normality. 'Regaining control leading to empowerment' encompassed participant empowerment through development of new skills and adjusting the feeding regime. 'Creating a new normal' involved making adjustments to facilitate inclusion and participation. 'External modifiers of the HEF experience' and 'internal modifiers of the HEF experience' encompassed the identification of external and internal HEF factors that influenced HEF adaptation. CONCLUSIONS: HEF was found to influence peoples' daily lives substantially and required extensive adjustments for individuals to find a new normal. A greater level of interpretation was provided beyond the current evidence-base for this group. Policymakers and clinicians should recognise the wider impact of HEF and ensure that this awareness is embedded in clinical practice.

The Effect of Gastrostomy Placement on Health-Related Quality of Life in Children.

BACKGROUND AND PURPOSE: A gastrostomy placement (GP) aims to improve nutritional status and health-related quality of life (HRQoL) in children who require long-term enteral tube feeding. We evaluated the effect of GP on HRQoL. METHODS: A prospective, longitudinal cohort study was performed including patients referred for laparoscopic GP. Children and/or caregivers were asked to fill out the validated PedsQL™ questionnaire before and 3 months after surgery. The aim was to compare preoperative with postoperative HRQoL and to identify predictors of HRQoL. RESULTS: Fifty patients were included with a median age of 3.4 years (interquartile range 1.4-5.6). After GP, total HRQoL did not significantly increase (p = 0.30). However, psychosocial health significantly increased: 55.8 (standard deviation ±20.8) to 61.2 (±19.6; p = 0.03) on a 100-point scale. This was mainly owing to an increase in social HRQoL: 58.2 (±32.3) to 68.3 (±27.9; p = 0.04). HRQoL both before and after GP was significantly lower in children with neurologic impairment (p < 0.0005). However, neurologic impairment did not influence the effect of surgery on HRQoL (p = 0.66). Low preoperative body mass index was a predictor for improvement in HRQoL after GP. CONCLUSIONS: After GP in children, psychosocial HRQoL improved significantly. This was mainly owing to an improvement in social HRQoL. LEVEL OF EVIDENCE: IV.