scholarly journals Managing children and adolescents on parenteral nutrition: challenges for the nutritional support team

2006 ◽  
Vol 65 (3) ◽  
pp. 217-221 ◽  
Author(s):  
Tracey Johnson ◽  
Elaine Sexton
Keyword(s):  
Parenteral Nutrition ◽  
Children And Adolescents ◽  
Nutritional Support ◽  
Intestinal Failure ◽  
Home Care Services ◽  
Cholestatic Liver Disease ◽  
Care Services ◽  
Child Assessments ◽  
The Individual ◽  
At Home

Managing infants, children and adolescents, ranging from premature infants to 18-year-old adolescents, on parenteral nutrition (PN) is a challenge. The ability of children to withstand starvation is limited and, unlike adults, children require nutrition for growth. PN in children is often required secondary to a congenital bowel problem rather than because of an acquired condition. Conditions requiring PN include motility disorders, congenital disorders of the intestinal epithelium and short-bowel syndrome (SBS). Intestinal failure may be temporary and children with SBS may be weaned from PN. However, other children require permanent PN. There are no comprehensive guidelines for the nutritional requirements of children and adolescents requiring PN. Practice in individual centres is based on clinical experience rather than clinical trials. Requirements are assessed on an individual basis according to age, nutritional status and clinical condition. These requirements need regular review to ensure that they remain appropriate for the changing age and weight of the child. Assessments of intakes use different methods, e.g. reference tables and predictive equations. Complications of PN include infection, accidental damage to, or removal of, the line and cholestatic liver disease. Home parenteral nutrition (HPN) is associated with fewer line infections and allows continuation of nutritional support in a more normal environment, encouraging normal development and participation in family activities. However, having a child at home on HPN is associated with physical and psychological stresses. A feeling of depression, loneliness and social isolation is common amongst children and their families. Home-care services are essential to supporting children at home and should be tailored to, and sensitive to, the individual needs of each family.

scholarly journals Parenteral nutrition at home in management of intestinal failure.

BMJ ◽  
1980 ◽  
Vol 280 (6228) ◽  
pp. 1356-1357 ◽  
Author(s):  
P J Milewski ◽  
E Gross ◽  
I Holbrook ◽  
C Clarke ◽  
L A Turnberg ◽  
...  
Keyword(s):  
Parenteral Nutrition ◽  
Intestinal Failure ◽  
At Home

scholarly journals STANDARDS OF KNOWLEDGE THAT FOUND NURSING PERFORMANCE IN HOME CARE

2020 ◽  
Vol 29 ◽  
Author(s):  
Angélica Mônica Andrade ◽  
Patrícia Pinto Braga ◽  
Maria Ribeiro Lacerda ◽  
Elysangela Dittz Duarte ◽  
Laerte Honorato Borges Junior ◽  
...  
Keyword(s):  
Home Care ◽  
Critical Discourse Analysis ◽  
Participant Observation ◽  
Single Case ◽  
Home Care Services ◽  
Care Services ◽  
The Family ◽  
The Individual ◽  
Care Innovation

ABSTRACT Objective: to analyze the knowledge standards that found nursing practices in the home care setting. Method: qualitative study using a single case study strategy, supported by the dialectical methodological framework. Thirteen nurses who work in home care services from two municipalities in Minas Gerais, Brazil, participated. The data were obtained in 266.5 hours of participant observation and 8 hours and 58 minutes of interview and submitted to Critical Discourse Analysis. Results: empirical knowledge was revealed to be fundamental for clinical, managerial and educational care at home. The adaptations specific to this environment require aesthetic knowledge. The relational and educational actions, the decisions responsible for benefiting the individual and his family, the doubt and willingness to learn when dealing with unpredictable cases and the assessment of the socioeconomic conditions of the family, represent, respectively, personal, ethical, lack of knowledge and sociopolitical aspects present in the practice of nurses in home care. Conclusion: the particularities of home care trigger different patterns of knowledge to ensure creative, sensitive, human and responsible care. Innovation and availability to learn are part of nurses' performance in home care. The need for differentiated training is reinforced in order to respond to the increasing complexity in this field.

scholarly journals Improving a Web-Based Tool to Support Older Adults to Stay Independent at Home: Qualitative Study (Preprint)

2019 ◽  
Author(s):  
Mirjam Marjolein Garvelink ◽  
Titilayo Tatiana Agbadjé ◽  
Adriana Freitas ◽  
Lysa Bergeron ◽  
Thomas Petitjean ◽  
...  
Keyword(s):  
Older Adults ◽  
Digital Literacy ◽  
Blood Pressure Measurement ◽  
Home Care Services ◽  
Information Barriers ◽  
Care Services ◽  
Health Innovations ◽  
Wide Range ◽  
Body Care ◽  
At Home

BACKGROUND Older adults desire to stay independent at home for as long as possible. We developed an interactive website to inform older adults and caregivers about ways to achieve this. OBJECTIVE This study aimed to perform an in-depth exploration among potential end users about how to improve the interactive website to better inform older adults and caregivers about ways to stay independent at home. METHODS To complement the results of a quantitative survey on the usability and acceptability of the website before implementation, we conducted a qualitative descriptive study. Using multiple recruitment strategies, we recruited a purposeful sample of older adults (aged ≥65 years) and caregivers of older adults struggling to stay independent at home. We conducted face-to-face or telephonic interviews in either English or French. In addition, we collected sociodemographic characteristics, other characteristics of participants (eg, health, digital profile, and perception of retirement homes), and experiences with using the website (factors facilitating the use of the website, barriers to its use, and suggestions for improvement). Interviews were audio recorded, transcribed verbatim, and thematically analyzed by two researchers. RESULTS We recruited 15 participants, including 5 older adults (mean age 75 years, SD 6) and 10 caregivers (mean age 57 years, SD 14). The mean interview time was 32 min (SD 14). Most older adults had either mobility or health problems or both, and many of them were receiving home care services (eg, blood pressure measurement and body care). Overall, participants found the website easy to navigate using a computer, reassuring, and useful for obtaining information. Barriers were related to navigation (eg, difficult to navigate with a cellphone), relevance (eg, no specific section for caregivers), realism (eg, some resources presented are not state funded), understandability (eg, the actors’ accents were difficult to understand), and accessibility (eg, not adapted for low digital literacy). Suggestions for improvement included a needs assessment section to direct users to the support appropriate to their needs, addition of information about moving into residential care, a section for caregivers, distinction between state-provided and private support services, simpler language, expansion of content to be relevant to all of Canada, and video subtitles for the hearing impaired. CONCLUSIONS Users provided a wealth of information about the needs of older adults who were facing a loss of autonomy and about what such a website could usefully provide. The request for less generic and more personalized information reflects the wide range of needs that electronic health innovations, such as our interactive website, need to address. After integrating the changes suggested, the new website—Support for Older Adults to Stay Independent at Home (SUSTAIN)—will be implemented and made available to better assist older adults and caregivers in staying independent at home.

scholarly journals Pre-decision regret before transition of dependents with severe dementia to long-term care

2021 ◽  
pp. 096973302110153
Author(s):  
Ingrid Hanssen ◽  
Flora M Mkhonto ◽  
Hilde Øieren ◽  
Malmsey LM Sengane ◽  
Anne Lene Sørensen ◽  
...  
Keyword(s):  
South Africa ◽  
Family Members ◽  
Home Care Services ◽  
Severe Dementia ◽  
Term Care ◽  
Decision Regret ◽  
Difficult Decision ◽  
Care Services ◽  
Informed Consent Form ◽  
The Individual

Background: To place a dependent with severe dementia in a nursing home is a painful and difficult decision to make. In collectivistic oriented societies or families, children tend to be socialised to care for ageing parents and to experience guilt and shame if they violate this principle. Leaving the care to professional caregivers does not conform with the cultural expectations of many ethnic groups and becomes a sign of the family’s moral failure. Research design: Qualitative design with individual in-depth interviews with nurses, family members and dementia care coordinators in Norway, Montenegro, Serbia and South Africa. Braun and Clarke’s six analytic phases were used. Ethical considerations: The project was approved by the Regional Committee for Research, South-Eastern Norway; the Norwegian Centre for Research Data; the Ethics Committee; University of Limpopo, MEDUNSA Campus, South Africa; and by the local heads of the respective nursing homes or home care services. Interviewees were informed orally and in writing and signed an informed consent form. Findings: Healthcare professionals tend to be contacted only when the situation becomes unmanageable. Interviewees talked about feelings of obligation, shame and stigma in their societies regarding dementia, particularly in connection with institutionalisation of family members. Many lacked support during the decision-making process and were in a squeeze between their own needs and the patients’ need of professional care, and the feeling of duty and worry about being stigmatised by their surroundings. This conflict may be a source of pre-decision regret. Conclusion: Family caregivers need help to understand the behaviours of persons with dementia and how to access the formal and informal services available. Thus, they may provide effective support to patients and family carers alike. Supportive interventions for caregivers need to be tailored to meet the individual needs of both the caregiver and the persons with dementia.

scholarly journals Relações de poder na atenção domiciliar: tensões e contradições entre profissionais, usuários e cuidadores

2018 ◽  
Vol 12 (4) ◽  
pp. 897 ◽  
Author(s):  
Yara Cardoso Silva ◽  
Kênia Lara Silva Lara Silva ◽  
Maria José Menezes Brito
Keyword(s):  
Discourse Analysis ◽  
Home Care ◽  
Social Control ◽  
Power Relations ◽  
Analytical Study ◽  
Home Care Services ◽  
Care Services ◽  
Care At Home ◽  
Relations Of Power ◽  
At Home

RESUMOObjetivo: analisar as relações de poder que se estabelecem nas práticas da Atenção Domiciliar. Método: estudo qualitativo, analítico, apoiado no referencial de poder foucaultiano, com dados obtidos por meio de 109 visitas às equipes de atenção domiciliar. Realizaram-se observações sobre a produção do cuidado; também, foram feitas entrevistas com cinco pacientes/cuidadores e dez profissionais. Os dados foram analisados na perspectiva da Análise de Discurso. Resultados indicam que as relações que atravessam a produção do cuidado no domicílio se caracterizam por envolvimento, empatia, vínculos e acolhimentos, mas, também, revelam a disciplinarização, o controle e a normatização que afetam o cuidado na atenção domiciliar. Conclusão: há momentos de produção e interdição do cuidado que compõem, simultaneamente, dois planos dos efeitos das relações de poder na atenção domiciliar. Descritores: Assistência Domiciliar; Serviços de Assistência Domiciliar; Poder (Psicologia).ABSTRACT Objective: to analyze the relations of power that are established in the practices of Home Care. Method: qualitative, analytical study, based on Foucauldian power referral, with data obtained through 109 visits to home care teams. Observations on the production of care were made; interviews were also conducted with Five patients / caregivers and ten professionals. The data was analyzed from the perspective of Discourse Analysis. Results indicate that the relationships that cross the production of care at home are characterized by involvement, empathy, bonds and welcoming, but also reveal the disciplinarization, control and standardization that affect care in the home. Conclusion: there are moments of production and interdiction of care that simultaneously compose two plans of the effects of power relations in home care. Descriptors: Home Care Services; Power (Psychology); Social Control; Informal. RESUMENObjetivo: analizar las relaciones de poder que se establecen en las prácticas de la Atención Domiciliaria. Método: estudio cualitativo, analítico, apoyado en el referencial de poder foucaultiano, con datos obtenidos por medio de 109 visitas a los equipos de atención domiciliaria. Realiz observaciones sobre la producción del cuidado; también, se realizaron entrevistas con cinco pacientes / cuidadores y diez profesionales. Los datos fueron analizados en la perspectiva del Análisis de Discurso. Resultados: indican que las relaciones que atraviesan la producción del cuidado en el domicilio se caracterizan por involucración, empatía, vínculos y acogidas, pero, también, revelan la disciplinarización, el control y la normatización que afectan el cuidado en la atención domiciliaria. Conclusión: hay momentos de producción e interdicción del cuidado que componen simultáneamente dos planes de los efectos de las relaciones de poder en la atención domiciliaria. Descriptores: Servicios de Atención Domiciliaria; Poder (Psicología); Controles Informales de la Sociedad.

Reversal of Intestinal Failure in Children With Tufting Enteropathy Supported With Parenteral Nutrition at Home

2018 ◽  
Vol 66 (6) ◽  
pp. 967-971 ◽  
Author(s):  
Iona Ashworth ◽  
Alexander Wilson ◽  
Samuel Aquilina ◽  
Raymond Parascandalo ◽  
Victor Mercieca ◽  
...  
Keyword(s):  
Parenteral Nutrition ◽  
Intestinal Failure ◽  
At Home
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