Care Of Technology-dependent Children Research Articles

Home-visit Nursing Practice toward Using Child Development Support or Day Care for Technology-dependent Children

Home-visit Nursing Practice toward Using Child Development Support or Day Care for Technology-dependent Children

The future of pediatric pulmonology: A survey of division directors, assessment of current research funding, and discussion of workforce trends.

In 2018-2020, The American Thoracic Society's Pediatric Pulmonology Division Directors Association (PPDDA) and Pediatric Pulmonology Training Directors Association (PEPTDA) convened a series of workshops to analyze workforce issues from the perspectives of current leaders within the discipline. In this, the report from the 3rd workgroup, we examine future workforce issues from several perspectives. We describe a PPDDA survey regarding current state and future needs of the discipline; an assessment of the current NIH research funding portfolio for major children's respiratory disorders; and an estimate of workforce trends in training, based mainly on ABP data. We conclude that current fellowship graduation rates appear to be sufficient to maintain and even grow the total number of pulmonologists, but demand for pediatric pulmonologists may still be greater than supply, and there are geographical disparities in access to care. New treatments for CF, growth of hospitalist services, care of technology dependent children, and multidisciplinary care for complex chronic disease, will likely change our practice over the next 10 years. Research funding appears to be robust for asthma, CF, BPD, microbiome, and pulmonary hypertension, compared to other chronic respiratory disorders. Few of these grants are led by pediatric pulmonologists. Thus, our discipline needs to adjust our training of fellows and junior faculty to take advantage of existing funding opportunities as well as advocate for greater funding for the other disorders we manage. Finally, we highlight opportunities for the discipline to enhance its roles in addressing emerging respiratory pathogens and expanding the diversity of its workforce. This article is protected by copyright. All rights reserved.

Care of children and young people who are dependent on technology.

British Journal of NursingVol. 29, No. 7 At A GlanceCare of children and young people who are dependent on technologyClaire Camara, Jane CallumClaire Camara(E-mail Address: [email protected])Graduate Tutor, Northumbria UniversitySearch for more papers by this author, Jane CallumSenior Lecturer, Northumbria University, Newcastle upon TyneSearch for more papers by this authorClaire Camara; Jane CallumPublished Online:11 Apr 2020https://doi.org/10.12968/bjon.2020.29.7.403AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Brenner M, Larkin PJ, Hilliard C, Cawley D, Howlin F, Connolly M. Parents' perspectives of the transition to home when a child has complex technological health care needs. Int J Integr Care. 2015;15(3):e035. https://doi.org/10.5334/ijic.1852 Crossref, Medline, Google ScholarCarnevale FA, Alexander E, Davis M, Rennick J, Troini R. 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Integration of Parent and Nurse Perspectives of Communication to Plan Care for Technology Dependent Children: The Theory of Shared Communication

PurposeThe purpose of this qualitative research study was to expand our understanding of the process of communication between parents of hospitalized technology dependent children and their nurses originally detailed in the Theory of Shared Communication (TSC). Design and MethodsThis grounded theory study was conducted with five parents of technology dependent children hospitalized in a large Midwestern children's hospital and nine nurses who care for technology dependent children admitted to the same hospital during July and August 2013. Semi-structured interviews and journals (parents only), field notes and a demographic survey were used to collect data which was analyzed using constant comparative analysis. ResultsParents verified the concepts of the TSC and relationships among them. Nurses' perceptions of communication with parents reflected the same parent identified and verified concepts upon which the TSC was originally grounded including respect for own and other's expertise, asking, listening, explaining, advocating, verifying understanding and negotiating roles to achieve mutual understanding of the child's plan of care. The nurses' perceptions differed stylistically but not categorically from those of the parents. ConclusionsThe addition of the nurse's perspectives to the verified TSC expands our understanding of this process of communication. Practice ImplicationsWith the integration of nurse and parent perspectives, the TSC can be used to enhance communication and care for hospitalized technology dependent children and their families.

Factors associated with involuntary hospital admissions in technology-dependent children

To identify the factors associated with involuntary hospital admissions of technology-dependent children, in the municipality of Ribeirão Preto, São Paulo State, Brazil. A cross-sectional study, with a quantitative approach. After an active search, 124 children who qualified under the inclusion criteria, that is to say, children from birth to age 12, were identified. Data was collected in home visits to mothers or the people responsible for the children, through the application of a questionnaire. Analysis of the data followed the assumptions of the Generalized Linear Models technique. 102 technology-dependent children aged between 6 months and 12 years participated in the study, of whom 57% were male. The average number of involuntary hospital admissions in the previous year among the children studied was 0.71 (±1.29). In the final model the following variables were significantly associated with the outcome: age (OR=0.991; CI95%=0.985-0.997), and the number of devices (OR=0.387; CI95%=0.219-0.684), which were characterized as factors of protection and quantity of medications (OR=1.532; CI95%=1.297-1.810), representing a risk factor for involuntary hospital admissions in technology-dependent children. The results constitute input data for consideration of the process of care for technology-dependent children by supplying an explanatory model for involuntary hospital admissions for this client group.

Care for technology dependent children and their relationship with the health care systems.

OBJECTIVE: to understand the experience of care delivery to technology dependent children based on the mothers' experience. METHOD: exploratory study with qualitative approach, based on the theoretical framework of medical anthropology and the narrative method. Twelve mothers participated and, as the technique to obtain the narratives, open interviews were held at the participants' homes. RESULTS: the narratives were organized into three thematic categories: the family system, identifying the care forms, the association between popular and scientific knowledge and the participation of the social network; the professional system, which discusses the relations between professionals and family, the hegemony of the biomedical model and the role of nursing; and the popular system, presenting popular care practices like spirituality and religiosity. CONCLUSION: the study provided support for a health care project that takes into account the families' moral and symbolic values and beliefs in view of the illness of a technology-dependent child. The results found can contribute towards changes in the health work process, so that its foundation is guided not only by the biomedical model, allowing the integration of the sociocultural dimensions into the health care movement.

Percepção de familiares sobre estressores decorrentes das demandas de cuidado de criança e adolescente dependentes de tecnologias

Estudo qualitativo, orientado pela Teoria do Modelo de Sistemas de Cuidado, que objetivou identificar percepções de familiares sobre estressores nas suas relações, consequentes ao cuidado de crianças/adolescentes dependentes de tecnologia. Os dados foram coletados através de entrevistas semiestruturadas, e submetidos à análise categorial temática. Participaram nove mulheres de diferentes famílias. Três categorias foram evidenciadas: "Minha vida ficou em função dele(a)"; "Sempre estão acontecendo situações que estressam"; A relação homem x mulher mudou. As mulheres identificaram a instalação de mudanças multidimensionais, cotidianas, na vida de suas famílias e principalmente nas suas vidas, uma vez que assumiram quase que integralmente o cuidado, abdicaram do trabalho profissional, do lazer e de "ser mulher". Conclui-se que para garantir as conquistas possibilitadas pelo avanço tecnológico é necessário apoiar a família, especialmente a mulher, com políticas que permitam a ela cuidar da criança/adolescente e realizar-se em outras dimensões.

Home-based palliative care: challenges in the care of technology-dependent children

To conceptualize palliative care and its indications in Pediatrics; to describe the difficulties involved in the delivery of such care at home for technology-dependent children; and to analyze, from a bioethical perspective, the moral dilemmas of palliative care assistance. A literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas. There are several obstacles to palliative care for technology-dependent children: structural difficulties at home; social isolation of both children and families; health professionals' sense of disbelief regarding this type of care; an excessive number of medical devices at home; uncertainty of a terminal prognosis; physical, emotional, social, material, and financial burden for parents and family; changes in family dynamics to adjust to these children; paternalistic relationship between professionals and family; changes in family roles, with shifts in the caregiver role. It is essential to outline an agenda based on the premise that the medical apparatus for technology-dependent children will change the landscape of the home, and such a change might become a problem to be faced by all those living together. Based on this assumption, actions performed in a setting other than a health care facility might exert an actual protective effect on children and family, offering support in their several needs and developing a model of care delivery that includes interventions in the different levels of burden on these vulnerated and unprotected individuals.

Care of Technology-Dependent Children in the Home

Home care for infants and children requiring life-sustaining technological interventions has been a common alternative to long-term hospitalization since the early 1980s. This has created a need for a sufficient pool of competent home health clinicians capable of providing highly skilled care in the home and of supporting family caregivers. The Pennsylvania Ventilator-Assisted Children's Home Program (VACHP) has developed and successfully implemented a 32-hour training program that has equipped more than 300 clinicians with the knowledge and skill level necessary to provide competent care for these children.

Homeward bound

The care of technology-dependent children at home is hampered by fragmented services and funding, as this year's RCN congress will hear.

007–Nurses' Descriptions of Ideal Home Nursing Care for Technology-Dependent Children and Their Families

007–Nurses' Descriptions of Ideal Home Nursing Care for Technology-Dependent Children and Their Families

Families' experiences of caring for technology-dependent children: a temporal perspective

In the present study, families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological', 'social' and 'natural' rhythms and routines around which the families' lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child's needs, and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families.