Summary The evaluation of quality of life (QoL) assesses patients’ well-being by taking into account physical, psychological and social conditions. Cancer and its treatment result in severe ...biochemical and physiological alterations associated with a deterioration of QoL. These metabolic changes lead to decreased food intake and promote wasting. Cancer-related malnutrition can evolve to cancer cachexia due to complex interactions between pro-inflammatory cytokines and host metabolism. Beside and beyond the physical and the metabolic effects of cancer, patients often suffer as well from psychological distress, including depression. Depending on the type of cancer treatment (either curative or palliative) and on patients’ clinical conditions and nutritional status, adequate and patient-tailored nutritional intervention should be prescribed (diet counselling, oral supplementation, enteral or total parenteral nutrition). Such an approach, which should be started as early as possible, can reduce or even reverse their poor nutritional status, improve their performance status and consequently their QoL. Nutritional intervention accompanying curative treatment has an additional and specific role, which is to increase the tolerance and response to the oncology treatment, decrease the rate of complications and possibly reduce morbidity by optimizing the balance between energy expenditure and food intake. In palliative care, nutritional support aims at improving patient's QoL by controlling symptoms such as nausea, vomiting and pain related to food intake and postponing loss of autonomy. The literature review supports that nutritional care should be integrated into the global oncology care because of its significant contribution to QoL. Furthermore, the assessment of QoL should be part of the evaluation of any nutritional support to optimize its adequacy to the patient's needs and expectations.
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.
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.
This article is commented on by Nimmo on page 1014 of this issue.
Enteral nutrition is the practice of delivering nutrition to the gut either orally or through a tube or other device. Many children are reliant on enteral feedings to either supplement their ...nutrition or as a complete source of their nutrition. Managing children on tube feedings requires a team of providers to work through such dilemmas as feeding schedules, weaning from tube feeding, sensory implications of tube feeding, treatment of pain or nausea associated with eating, oral-motor issues, and behavioral issues in the child and family. The purpose of the current review is to summarize the multidisciplinary aspects of enteral feeding. The multidisciplinary team consists of a variable combination of an occupational therapist, speech-language pathologist, gastroenterologist, psychologist, nurse, pharmacist, and dietitian. Children who have minimal oral feeding experience and are fed via a nasogastric or gastrostomy tube often develop oral aversions. Limited data support that children with feeding disorders are more likely to have sensory impairment and that early life pain experiences contribute to feeding refusal. There are inpatient and outpatient programs for weaning patients from tube feeding to eating. The parent-child interaction is an important part of the assessment and treatment of the tube-fed child. This review also points out many information gaps, including data on feeding schedules, blenderized tube feedings, the best methods for weaning children off enteral feedings, the efficacy of chronic pain medications with tube-fed children, and, finally, the necessity of the assessment of parental stress among all parents of children who are tube fed.
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.
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.
Enteral nutrition is effective in ensuring nutritional requirements and growth. However, when tube feeding lasts for a longer period, it can lead to tube dependency in the absence of medical reasons ...for continuation of tube feeding. Tube-dependent children are unable or refuse to start oral activities and they lack oral skills. Tube dependency has health-, psychosocial-, and economy-related consequences. Therefore, the transition to oral feeding is of great importance. However, this transition can be very difficult and needs a multidisciplinary approach. Most studies for treatment of tube dependency are based on behavioral interventions, such as family therapy, individual behavior therapy, neuro-linguistic programming, and parental anxiety reduction. Furthermore, oral motor therapy and nutritional adjustments can be helpful in tube weaning. The use of medication has been described in the literature. Although mostly chosen as the last resort, hunger-inducing methods, such as the Graz-model and the Dutch clinical hunger provocation program, are also successful in weaning children off tube feeding.
Conclusion
: The transition from tube to oral feeding is important in tube-dependent children but can be difficult. We present an overview for the prevention and treatment of tube dependency.
What is known:
•
Longer periods of tube feeding can lead to tube dependency.
• Tube weaning can be very difficult.
What is new:
•
Weaning as soon as possible and therefore referral to a multidisciplinary team are recommended.
•
An overview of treatment options for tube dependency is presented in this article.
Aims and objectives
To explore patients and carers' experience and perceptions of different modalities of long‐term enteral feeding.
Background
With an ageing population in Singapore, there is a ...concomitant increase in number of patients with dysphagia and hence increase in prevalence of enteral feeding. It is essential to understand experiences of patients and home carers with long‐term home enteral feeding and perceptions of different modalities to better provide support.
Design
A qualitative descriptive approach fulfilling the COREQ checklist criteria (See File S1). Nine patients who were receiving long‐term enteral feeding and nine carers were recruited over the period of August to December 2017. One‐to‐one interviews were conducted and audio‐recorded. An inductive content analysis approach, with open coding, creation of categories and ion of data, was adopted.
Results
Three themes were generated: (a) factors influencing choice of mode of enteral feeding; respondents narrated factors such as need to “conceal” illness, need to be independent and previous bad experience with alternative modality (b) identified informational, emotional and physical needs. Respondents reported the need for support in terms of information on the different modalities, and training on how to self‐care or provide care and (c) individual perception and attitude towards life with enteral feeding. Most respondents portrayed a positive outlook to life, despite that they could no longer participate in communal eating.
Conclusion and Relevance to clinical practice
Understanding patients and carers' experience and perceptions will inform the development of strategies to empower future patients and carers in choice of modality for enteral feeding. Patients with percutaneous endoscopic gastrostomy (PEG) found it easier to integrate enteral tube feeding into daily lives. Carers played a pivotal role in choice of modality, as well as in care of patients on enteral feeding.
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.
Compulsory treatment in anorexia nervosa: A review Elzakkers, Isis F.F.M.; Danner, Unna N.; Hoek, Hans W. ...
The International journal of eating disorders,
12/2014, Letnik:
47, Številka:
8
Journal Article
Background
Nutrition by enteral tube is a complex therapy requiring significant management to ensure safe, timely delivery of nutrients and avoidance of complications. In the home setting, people ...with enteral tubes and their carers are required to self‐manage the therapy, including the need to cope with problems that arise. Whilst previous studies have conveyed experiences of people with enteral tubes, few have described views on enteral tube problems.
Aims and objectives
Drawing on the findings of a previously reported study (Journal of Human Nutrition and Dietetics, 2019), this paper aims to describe in‐depth the experiences of people with enteral tubes and their carers of living with the tube day to day and managing problems that arise.
Design
A qualitative descriptive design using semi‐structured in‐depth interviews was employed.
Methods
A purposive sample of 19 people with enteral tubes and 15 carers of people with tubes participated. Interviews were recorded and transcribed. Using a thematic analysis approach, codes were defined and applied; themes developed and refined. Five themes with associated subthemes were generated, of which one, “living with the tube,” is reported in‐depth. The COREQ checklist was used.
Results
Participants described the tube affecting both physical and psychosocial being and revealed it had resulted in significant changes to their daily living, necessitating adaptation to a new way of life. Participants reported spending much time and effort to manage tube problems, at times without support from healthcare practitioners knowledgeable in tube management. Discomfort associated with the tube was commonly described.
Conclusions
Living with an enteral tube impacts significantly on daily life requiring adaptations to normal routine. People with tubes and their carers use a range of strategies to manage common complications.
Relevance to clinical practice
Knowledge and understanding of how people with enteral tubes live with their tube and manage issues as they arise will enable healthcare practitioners to provide better support.
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