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.

Estimated Cost-Effectiveness of Intensive Interdisciplinary Behavioral Treatment for Increasing Oral Intake in Children With Feeding Difficulties.

OBJECTIVE : To examine the cost-effectiveness of intensive interdisciplinary behavioral treatment (IIBT) to address severe pediatric feeding difficulties and lead to the removal or prevention of gastrostomy tubes (G tubes) from the perspective of the insurance company. METHODS : Costs associated with G tubes and IIBT were compiled from the available literature and national databases. Costs were updated to price at the start of 2015 to allow data from different years to be analyzed on the same scale. RESULTS : One-way sensitivity and two-way threshold analyses demonstrated that IIBT may be a cost-effective treatment for prevention and removal of G tubes over 5 and 10 years. DISCUSSION : Data from this study can be used to justify cost of services for IIBT, and programs can use these data to discuss conservative savings of IIBT based on their treatment model and level of effectiveness.

Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition.

BACKGROUND & AIMS: Caregivers of children with chronic diseases included in a home enteral nutrition (HEN) programme are at risk of experiencing a feeling of burden, high level of anxiety and psychological distress. The aims of this study were: first, to examine the prevalence of symptoms of anxiety-depression in caregivers of children with neurological diseases requiring HEN by gastrostomy tube (GT); second, to compare the characteristics of caregivers with high or low risk of exhibiting symptoms of anxiety-depression; and third, to investigate possible associations to child disease severity and nutrition support mode. METHODS: A cross-sectional observational study was performed in 58 caregivers of children (31 boys, aged 0.3-18 years) with neurological diseases and GT feeding. The characteristics of caregivers with high or low risk of presenting symptoms of anxiety-depression were compared regarding the following variables: socio-demographic characteristics, the primary caregiver's intrapsychic factors, anthropometric parameters of the child, length of HEN, type of nutrients delivered by GT and infusion regime. RESULTS: All primary caregivers were mothers. Fifty-three per cent of them showed high risk of exhibiting symptoms of anxiety-depression. Mothers with high or low risk of presenting symptoms of anxiety-depression were comparable in age and family socio-economic status. They were also similar in terms of age, anthropometric conditions and length of HEN in their children.No differences were found between the two groups of mothers according to the level of the child's motor function impairment, type of nutrients delivered by GT and infusion regime. Higher levels of psychological distress and perception of burden overload were found in mothers with high risk of exhibiting symptoms of anxiety-depression. CONCLUSIONS: This study found a high prevalence of symptoms of anxiety-depression, perception of burden overload and psychological distress in caregivers of children with HEN. Thus, greater practical and emotional support is required for these families.

Long-term nasogastric tube feeding in elderly stroke patients--an assessment of nutritional adequacy and attitudes to gastrostomy feeding in Asians.

BACKGROUND: Gastrostomy feeding is superior to long-term nasogastric (NG) feeding in patients with dysphagic stroke, but this practice remains uncommon in Asia. We sought to examine the nutritional adequacy of patients on long term NG feeding and identify barriers to gastrostomy feeding in these patients. METHODOLOGY: A prospective comparison of subjective global assessment (SGA), and anthropometry (mid-arm muscle circumference, MAMC; triceps skinfold thickness, TST) between elderly stroke patients on long-term NG feeding and matched controls was performed. Selected clinicians and carers of patients were interviewed to assess their knowledge and attitudes to gastrostomy feeding. RESULTS: 140 patients (70 NG, 70 oral) were recruited between September 2010 and February 2011. Nutritional status was poorer in the NG compared to the oral group (SGA grade C 38.6% NG vs 0% oral, p<0.001; TST males 10.7 + 3.7 mm NG vs 15.4 + 4.6 mm oral, p<0.001; MAMCmales 187.9 + 40.4 mm NG vs 228.7 + 31.8 mm oral, p<0.001). 45 (64.3%) patients on long-term NG feeding reported complications, mainly consisting of dislodgement (50.5%), aspiration of feed content (8.6%) and trauma from insertion (4.3%). Among 20 clinicians from relevant speciliaties who were interviewed, only 11 (55%) clinicians would routinely recommend a PEG. All neurologists (100%) would recommend a PEG, whilst the response was mixed among non-neurologists. Among carers, lack of information (47.1%) was the commonest reason stated for not choosing a PEG. CONCLUSION: Elderly patients with stroke on long term NG feeding have a poor nutritional status. Lack of recommendation by clinicians appears to be a major barrier to PEG feeding in these patients.

Families with children who are technology dependent: normalization and family functioning.

This cross-sectional study examined family functioning and normalization in 103 mothers of children ≤16 years of age dependent on medical technology (mechanical ventilation, intravenous nutrition/medication, respiratory/nutritional support) following initiation of home care. Differences in outcomes (mother's depressive symptoms, normalization, family functioning), based on the type of technology used, were also examined. Participants were interviewed face-to-face using the Demographic Characteristics Questionnaire, the Functional Status II-Revised Scale, the Center for Epidemiological Studies-Depression Scale, a Normalization Scale subscale, and the Feetham Family Functioning Survey. Thirty-five percent of the variance in family functioning was explained primarily by the mothers' level of depressive symptoms. Several variables were significant predictors of normalization. Analysis of variance revealed no significant difference in outcomes based on the type of technology used. Mothers of technology-dependent children are at high risk for clinical depression that may affect family functioning. This article concludes with clinical practice and policy implications.

Critical analysis of caregiver perceptions regarding gastrostomy tube placement.

BACKGROUND: Gastrostomy tubes (GT) are often required to safely provide nutrition in children with feeding disorders and aspiration risk. The need for a GT brings with it known risks, complications, and benefits, but caregivers may have unspoken concerns and expectations. The present study was done to assess caregiver concerns, expectations, and satisfaction with GT placement in children. METHODS: A two-part retrospective and prospective study was conducted to assess caregiver concerns and expectations related to GT placement, to determine which concerns and expectations came to fruition, and to rate overall satisfaction with the GT. Questionnaires were used to collect data before and after GT placement. A visual analog scale (VAS) score was used to determine degree of concern and satisfaction. RESULTS: Sixty-four children (19 retrospective, 45 prospective) completed the study. Concern score by VAS was evenly distributed with a mean value of 47.4 +/- 31.8. Concerns were realized in 25%; expectations were met in 93%. Feeding time decreased following GT placement. Satisfaction was reported as satisfied (23.6%), pleased (16.4%), or very pleased (60.0%). CONCLUSIONS: Despite pre-placement concerns, most caregivers reported being pleased with the GT following placement. Concerns that occurred were of minor medical significance. Most expectations were met, in particular improved nutrition. The present study provides insight into caregiver concerns and expectations, and which are likely to occur. This information can be useful when counseling caregivers of children requiring GT.

Changing from oral to enteral feeding: impact on families of children with disabilities.

The number of children in the U.K. who are being fed enterally at home is increasing. Feeding by nasogastric or gastrostomy tube may not seem particularly abnormal to nurses who care for sick children. However, the initiation of tube feeding can have a significant impact on both the child and the family. Research related to children with disabilities who have feeding problems is focused around the views of their mothers because they are often the main carers of these children. However, eating is a social activity in our society and tube feeding will have an effect on other members of the family. To provide adequate support, nurses need to understand the nature and scale of the impact that continuing with oral feeding or changing to gastrostomy feeding has on the whole family.

The impact of HETF for adults with neurological conditions.

The number of patients receiving home enteral tube feeding (HETF) in the UK is growing, despite little evidence that it improves survival or quality of life in many cases. There is also little work that has been done to explore the emotional impact of this invasive procedure on patients or carers. This article draws on a literature review to highlight some of the issues that may arise with patients receiving HETF, focusing particularly on the largest group of these patients: those with neurological conditions. The literature shows that emotional adjustments are required for both patient and carers following the placement of a percutaneous endoscopic gastrostomy. Therefore consideration of the likely emotional and psychological consequences of home enteral tube feeding has implications for clinical practice during the decision-making process for appropriate patient selection. There is a need for community nurses to consider these issues and ensure appropriate support is provided for patients and their carers.

The psychosocial impact on parents of tube feeding their child.

A review of 13 papers investigating parents' experience of long-term tube feeding in disabled children and young people identified a significant impact on parents and families related to oral feeding, decision making and tube feeding itself. Mixed messages and pressure from health professionals and relatives made decision making about tube feeding more difficult for parents. Making the decision to tube feed or proceed to gastrostomy was described in terms of 'giving in'. Parents expressed a need for consistent, accurate information. Once tube feeding was established there is a positive impact on the lives of the child and family - although some parents reported reduced support and continued feelings of inadequacy. The significance parents attach to oral feeding and their information and respite care needs when tube feeding must be recognised and further explored.

Dysphagia management for progressive neurological conditions.

This article discusses some of the issues surrounding dysphagia management for patients with progressive neurological conditions. It is important that health professionals are aware of the available options and that they consider patients' wishes to meet their nutritional needs.

Surrogates' perceptions about feeding tube placement decisions.

OBJECTIVES: (1) To determine surrogates perceptions about who made the decision to place the feeding tube and who they would have preferred to have made the decision. (2) To determine surrogates' perceptions of the information they received to make this decision. METHODS: Structured interviews with 246 surrogate decision-makers. RESULTS: Fifty-five percent of surrogates felt that the decision was made primarily by the surrogate, but 75% would prefer that the decision be shared with the physician. Surrogates reported that they discussed the benefits (80%) and the risks (72%) of feeding tube placement and discussed what life would be like with the feeding tube (65%) and without the feeding tube (67%). They also reported being asked if they understood the information (85%) and their thoughts about placement (56%). Despite receiving this information, 28 to 41% reported wanting more information about these aspects. CONCLUSION: Surrogates would have preferred greater physician participation in decisions about feeding tube placement and many reported that their informational needs were not completely met. PRACTICE IMPLICATIONS: These results suggest that physicians may be justified in taking a more active role in feeding tube decisions with surrogates and that many surrogates desire more information than is required by standards of informed decision making.

Medical and psychosocial experiences of family caregivers with children fed enterally at home.

BACKGROUND: Pediatric home enteral nutrition (HEN) studies that evaluate the psychosocial aspects of caregiving are limited. Overlooking the psychosocial needs of the caregiver may result in negative outcomes such as lack of adherence to the HEN regimen. This study determined whether caregivers report psychosocial situations more frequent and difficult to manage than medical situations. METHODS: A questionnaire, which identified 10 psychosocial and 10 medical issues related to pediatric HEN, was mailed to 150 caregivers (37 responded), who rated the statements for frequency and difficulty. Each statement was ranked from most frequent/difficult to least frequent/difficult by mean cross-product score (frequency x difficulty). To indicate overall burden, a medical total composite score (MTCS) and a psychosocial total composite score (PTCS) were calculated by summing the cross-products of the respective problems. Paired t tests compared MTCS to PTCS and also the psychosocial frequency means and difficulty means to the same for the medical problems. RESULTS: Of the top 10 problems, 7 were psychosocial, whereas 3 were medical. Caregivers reported incidences of psychosocial problems more frequently (p < .003) than medical problems, and they had more difficulty (p < .001) with the psychosocial situations than with the medical ones. The PTCS was significantly higher (p < .001) than the MTCS. CONCLUSIONS: The psychosocial situations were perceived as causing a greater burden and greater difficulty in coping with everyday life. Health professionals need to understand and address the psychosocial difficulties of the caregiver in order to provide support for the caregiver and promote positive growth and development of the child.

Economic and psychologic costs for maternal caregivers of gastrostomy-dependent children.

OBJECTIVE: To examine the economic and psychologic costs of care provided by maternal caregivers to children with gastrostomy tube (GT) feedings. STUDY DESIGN: We conducted a 3-site study of primary maternal caregivers of 101 chronically ill children, with (n = 50) and without (n = 51) enteral nutrition support by GT to determine the time spent providing technical care, nontechnical care, and health care management and to assess depressive mood and quality of life. Associated costs were determined. RESULTS: Caregivers spent 339.7 +/- 34.1 (SEM) min/d to provide all care. Children with a GT required more than twice as much care time as children without a GT: 484.5 +/- 54.6 versus 197.8 +/- 30.6 min/d ( P < .0001). The mean annual total value of home care by the primary caregiver for a child with a GT was 37,232 dollars, compared with 15,004 dollars for the child without a GT. Caregivers of children with GT were no more depressed or less satisfied with their lives than caregivers of children without GT. CONCLUSIONS: Use of a GT for enteral nutrition support is associated with significant increased care time by the primary caregiver but not at additional psychologic cost compared with caring for chronically ill children.

Preferences of older African-Americans for long-term tube feeding at the end of life.

The purpose of this study was to elicit preferences and reasons behind preferences for percutaneous endoscopic gastrostomy (PEG) tube placement in an older African-American sample. Five focus groups were conducted with subjects invited from the Geriatric Clinic of an urban tertiary care hospital. Thematic and latent content analyses were used. Five broad themes emerged as reasons behind the acceptance or rejection of a PEG tube, namely: the nature of the illness; the quality of life at the time of the decision; the concern about dependency; experiences; and religion (including issues of death). The issue of proxy also arose and contained three themes: fear of loss of decision-making ability; trust in family or caregivers as proxy even when the proxy choices differed from their own choices; and trust in the doctor and family to respect personal decisions. Use of a qualitative approach enabled potentially sensitive issues to be discussed. Preferences and the reasons behind these preferences may not always be anticipated by clinicians.

The impact of home enteral tube feeding in everyday life: a qualitative study.

Advances in clinical and technical areas, combined with developments in community support services, have enabled people to receive enteral tube feeding at home in the UK. Research has focused on clinical and technical aspects, and people's experiences have largely been explored through the audit of after-care services. The research reported in the present paper consisted of a qualitative study in which a small number of people under going enteral tube feeding at home and their carers were interviewed. The study took place in one area of northern England. The interviews explored aspects of daily life, focusing on decision-making and adaptation, and revealed positive feelings about the process of tube feeding, as well as areas of difficulty and concern. Opportunities to improve practice and services are identified from these accounts.

Outcome of long-term enteral feeding.

In the past two decades, many technical advances have made tube enteral feeding much more comfortable and acceptable to patients and their families. This has greatly expanded the use of this therapy, both in clinical conditions where it was traditionally prescribed and in many other diagnoses. This expanded use raises important questions about how much enteral nutrition is being used, the medical outcome in different clinical conditions, and the quality of life experienced by long-term therapy users. This article addresses these outcome issues for patients in the nonhospital setting.

Behavioral assessment and treatment of pediatric feeding disorders.

Pediatric feeding disorders are estimated to occur in as many as one in every four infants and children, and when serious can require numerous, costly and sustained interventions. For over a decade research has cumulated evidence on the contributions of Behavior Analysis in understanding and remediating some types of pediatric feeding disorders. The systematic use of this body of evidence in conjunction with other approaches (medical, nutrition, occupational therapy, physical therapy, and so forth) is being carried out on an inpatient treatment unit at the Kennedy Krieger Institute. Key aspects are described here, including direct observation behavior assessment, approaches for increasing and decreasing feeding behavior, skill acquisition, transfer of treatment gains, and parent training. The results based on case studies and overall program evaluation indicate that medically complicated, severe feeding disorders can be treated successfully in a few months with a multidisciplinary approach which incorporates behavioral procedures.

Medical treatment preferences of nursing home residents: relationship to function and concordance with surrogate decision-makers.

OBJECTIVE: To describe treatment preferences of nursing home residents, concordance with decisions by self-selected proxies and to establish the relationship of sociodemographic and functional measures to decisions. SETTING AND SUBJECTS: 52 patient-proxy pairs at a Veterans Affairs nursing home. METHODS: Treatment preferences were elicited from residents and proxies regarding cardiopulmonary resuscitation, mechanical ventilation, and intensive care unit care. Hospitalization, intravenous antibiotics, intravenous fluid administration, and tube feeding were presented in three separate health scenarios. Concordance was determined for the entire interview and separately for each scenario. Treatment-seeking intensity and decision-making consistency were scored and used to explore associations with sociodemographic variables and function. RESULTS: Subjects were predominantly male (97%) and non-Hispanic white (74%); average age was 70 +/- 12 years, with 4 +/- 2.9 diagnoses. Residents accepted 70% of all treatments. The proportion of subjects accepting interventions declined parallel to health status in each scenario. Only 7/52 (13%) subjects made inconsistent decisions. Resident treatment acceptance was inversely associated with GDS scores but not associated with any other sociodemographic or functional measure. Concordance with proxies was no greater than chance. Proxies' decisions were not systematically biased against resident preferences or influenced by patient characteristics. CONCLUSIONS: Veterans desired most treatments, but adjusted preferences according to health status and were not inconsistent. Depressive symptoms should be addressed prior to advance directive selection. The patient remains the best source of information, but proxies' decisions exhibit no bias and are not affected by patient status.

The case of Mary Hier: when substituted judgment becomes sleight of hand.

KIE: Mary Hier, a 92-year old, institutionalized mentally ill woman, had pulled out her gastric feeding tube, resisted its reinsertion, and objected to receiving injections of Thorazine. Using the substituted judgment doctrine, a Massachusetts probate judge concluded that Mrs. Hier would accept the drug if she were competent but would refuse a gastrotomy to replace the feeding tube. The decision was upheld on appeal. Whether the best interests of the patient were served is discussed in terms of devaluing the life of the mentally handicapped and discriminating against them under the guise of protecting their rights.^ieng