scholarly journals Home mechanical ventilation patients: a retrospective survey to identify level of burden in real life

2016 ◽  
Vol 67 (3) ◽  
Author(s):  
M. Vitacca ◽  
J. Escarrabill ◽  
G. Galavotti ◽  
A. Vianello ◽  
E. Prats ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Home Care ◽  
Care Service ◽  
Neuromuscular Disorders ◽  
Health Care Service ◽  
Real Life ◽  
Underlying Disease ◽  
Home Mechanical Ventilation ◽  
Care Burden ◽  
High Dependency

Background and Aim. Home care for patients under home mechanical ventilation (HMV) may cause dramatic physical and economic burden in addition to the burden of time on family/caregivers and health care service (HCS) with difficult resource allocation decision-making. Our aims were: 1. To identify conditions causing major care burden in managing HMV patients according to family and payer’s perspectives related to characteristics of the disease, dependency and accessibility; and 2. To find, if any, differences among diseases. Methods. A questionnaire was sent to eight pulmonary centres to identify factors connected with the greater care burden. Retrospective data of 792 patients still alive and in HMV was reviewed. Results. Compared to neuromuscular disorders (NM) and chest wall deformities, the COPD group have presented a statistically greater number of hospitalisations/yr (1.37 ± 0.77), greater length of stay (13 ± 10 days), higher number of outpatient visits/yr (2.55 ± 1.73) or emergency room accesses/ yr (0.74 ± 1.08). Patients with NM diseases need more home care. The prevalence of one, two and three among five selected burden criteria (needs of MV > 12 hrs/day, tracheotomy, high dependency, distance from hospital, frequent hospitalisations) was respectively 19%, 30% and 33% of the cases; the NM was the group most represented. Conclusions. In HMV patients: 1. underlying disease, level of their dependency, hours spent under MV, presence of tracheotomy, home distance from hospital, hospital accesses are the causes of major care burden; and 2. as a novelty we have demonstrated that more than fifty percent of them present two or three contemporaneous criteria selected as care burden, being NM and COPD patients the most representative group necessitating of family’s and HCS’s care respectively.

scholarly journals Invasive Home Mechanical Ventilation: 10-Year Experience of a Pediatric Home Care Service

2020 ◽  
pp. respcare.07406
Author(s):  
Eliza Fernanda Borges ◽  
Laerte Honorat Borges-Júnior ◽  
Antônio José Lana Carvalho ◽  
Hyster Martins Ferreira ◽  
Wallisen Tadashi Hattori ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Home Care ◽  
Care Service ◽  
Home Care Service ◽  
Home Mechanical Ventilation

Außerklinische Beatmung – Konzepte und Therapieempfehlungen

2017 ◽  
Vol 142 (16) ◽  
pp. 1197-1204 ◽  
Author(s):  
Sarah Schwarz ◽  
Friederike Magnet ◽  
Bernd Schönhofer ◽  
Wolfram Windisch
Keyword(s):  
Mechanical Ventilation ◽  
Scientific Evidence ◽  
Underlying Disease ◽  
Home Mechanical Ventilation ◽  
Term Survival ◽  
Number Of Patients ◽  
Related Quality ◽  
Außerklinische Beatmung ◽  
Health Related

AbstractThe prognosis of patients receiving home mechanical ventilation is very heterogeneous and depends on the underlying disease, the degree of respiratory dependency and the comorbidities. Due to the severe chronic diseases, the initiation of a long-term NIV must be done during an inpatient treatment. Two recently published randomized controlled trials using more aggressive forms of NPPV targeted at normalizing hypercapnic PaCO2 values, showed improved long term survival also in patients with an underlying diagnosis of COPD. Consequently, the number of patients receiving home mechanical ventilation has dramatically increased in recent years and more and more outpatient settings has been established without scientific evidence. Nevertheless, beside reliable care structures, ethical aspects and health related quality of life are of great importance in the context of home mechanical ventilation.

scholarly journals Practices used by a home care team: implications for caregivers

2021 ◽  
Vol 74 (2) ◽  
Author(s):  
Yara Cardoso Silva ◽  
Kênia Lara Silva ◽  
Isabela Silva Câncio Velloso
Keyword(s):  
Health Care ◽  
Discourse Analysis ◽  
Qualitative Study ◽  
Home Care ◽  
Home Health Care ◽  
Care Service ◽  
Health Care Service ◽  
Home Health ◽  
Care Team ◽  
Power Relationship

ABSTRACT Objectives: to analyze the practices of a home care team and their implications for caregivers’ performance. Methods: qualitative study with data obtained from observation of 21 users, 30 caregivers and 6 professionals from the home health care service in a municipality in Minas Gerais, from February to June 2018. The material was analyzed from the perspective of discourse analysis according to Michel Foucault. Results: team interference upon caregivers is exercised by disciplinary practices and prescriptive, authoritative and surveilling behaviors. The team’s knowledge-power relationship determines caregivers’ acceptance through convincing or through difficulty of understanding assigned orientations. Educational practices would enable caregivers to be constituted as active, participative, empowered and reflective subjects. Final Considerations: team practices interfere with caregivers’ ways of acting and being and they have implications in objectification and subjectification processes.

Tele-Assistance in pediatric neuromuscular disorders requiring home mechanical ventilation, multicentric study

2016 ◽  
Vol 26 ◽  
pp. S148-S149
Author(s):  
F. Trucco ◽  
M. Pedemonte ◽  
F. Racca ◽  
R. Falsaperla ◽  
C. Romano ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Neuromuscular Disorders ◽  
Home Mechanical Ventilation ◽  
Multicentric Study

Dying of amyotrophic lateral sclerosis

Neurology ◽  
2019 ◽  
Vol 93 (23) ◽  
pp. e2083-e2093 ◽  
Author(s):  
Jocelyn Zwicker ◽  
Danial Qureshi ◽  
Robert Talarico ◽  
Pierre Bourque ◽  
Mary Scott ◽  
...  
Keyword(s):  
Health Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Home Care ◽  
Home Visit ◽  
Care Service ◽  
Health Care Service ◽  
Large Population ◽  
Population Based ◽  
Cost Of Care ◽  
Lateral Sclerosis

ObjectiveTo describe health care service utilization and cost for decedents with and without amyotrophic lateral sclerosis (ALS) in the last year of life.MethodsUsing linked health administrative data, we conducted a retrospective, population-based cohort study of Ontario, Canada, decedents from 2013 to 2015. We examined demographic data, rate of utilization, and cost of health care services in the last year of life.ResultsWe identified 283,096 decedents in Ontario, of whom 1,212 (0.42%) had ALS. Decedents with ALS spent 3 times as many days in an intensive care unit (ICU) (mean 6.3 vs 2.1, p < 0.001), and twice as many days using complex continuing care (mean 12.7 vs 6.0, p < 0.001) and home care (mean 99.1 vs 41.3, p < 0.001). A greater percentage of decedents with ALS received palliative home care (44% vs 20%, p < 0.001) and palliative physician home visits (40% vs 18%, p < 0.001) than decedents without ALS. Among decedents with ALS, a palliative physician home visit in the last year of life was associated with reduced adjusted odds of dying in hospital (odds ratio 0.65, 95% confidence interval 0.48–0.89) and fewer days spent in the ICU. Mean cost of care in the last year of life was greater for those with ALS ($68,311.98 vs $55,773.48, p < 0.001).ConclusionsIn this large population-based cohort of decedents, individuals with ALS spent more days in the ICU, received more community-based services, and incurred higher costs of care in the last year of life. A palliative care physician home visit was associated with improved end of life outcomes; however, the majority of patients with ALS did not access such services.

scholarly journals Clinical Outcomes Associated with Home Mechanical Ventilation: A Systematic Review

2016 ◽  
Vol 2016 ◽  
pp. 1-10 ◽  
Author(s):  
Erika J. MacIntyre ◽  
Leyla Asadi ◽  
Doug A. Mckim ◽  
Sean M. Bagshaw
Keyword(s):  
Systematic Review ◽  
Mechanical Ventilation ◽  
Clinical Outcomes ◽  
Caregiver Burden ◽  
Neuromuscular Disorders ◽  
Cochrane Library ◽  
Home Mechanical Ventilation ◽  
Thoracic Diseases ◽  
Clinical Trial Registries ◽  
Hypoventilation Syndrome

Background. The prevalence of patients supported with home mechanical ventilation (HMV) for chronic respiratory failure has increased. However, the clinical outcomes associated with HMV are largely unknown.Methods. We performed a systematic review of studies evaluating patients receiving HMV for indications other than obstructive lung disease, reporting at least one clinically relevant outcome including health-related quality of life (HRQL) measured by validated tools; hospitalization requirements; caregiver burden; and health service utilization. We searched MEDLINE, EMBASE, CINAHL, the Cochrane library, clinical trial registries, proceedings from selected scientific meetings, and bibliographies of retrieved citations.Results. We included 1 randomized control trial (RCT) and 25 observational studies of mixed methodological quality involving 4425 patients; neuromuscular disorders (NMD) (n=1687); restrictive thoracic diseases (RTD) (n=481); obesity hypoventilation syndrome (OHS) (n=293); and others (n=748). HRQL was generally described as good for HMV users. Mental rather than physical HRQL domains were rated higher, particularly where physical assessment was limited. Hospitalization rates and days in hospital appear to decrease with implementation of HMV. Caregiver burden associated with HMV was generally high; however, it is poorly described.Conclusion. HRQL and need for hospitalization may improve after establishment of HMV. These inferences are based on relatively few studies of marked heterogeneity and variable quality.

Family Perceptions of Quality of Life for Pediatric Home Ventilator Patients

2020 ◽  
Vol 32 (3) ◽  
pp. 148-155
Author(s):  
Lynn Shesser ◽  
Darcy Brodecki ◽  
Ruth Lebet
Keyword(s):  
Quality Of Life ◽  
Mechanical Ventilation ◽  
Home Care ◽  
Repeated Measures ◽  
Financial Burden ◽  
Neuromuscular Disorders ◽  
Self Report ◽  
Improvement Project ◽  
Healthcare Needs

Home mechanical ventilation is an alternative to institutional management for some children with chronic or degenerative respiratory and neuromuscular disorders. Over the past 20 years, Children’s Hospital of Philadelphia has enhanced its Home Care Home Ventilator Program, designed to transition hospitalized children requiring long-term mechanical ventilation safely home. Program goals include supporting patient safety, medical stability, and caregiver competence while promoting quality of life. This longitudinal quality improvement project examined perceived quality of life for families with children discharged home for the first time on mechanical ventilation. We sought to identify unmet needs related to this transition. A self-report quality-of-life survey adapted from several validated tools was completed by the primary caregiver at 3 specific times over 6 months. Repeated-measures general linear modeling examined changes over time in caregivers’ perceptions of quality of life and confidence in meeting their child’s ongoing healthcare needs. After completing the inpatient portion of the program, followed by 6 months caring for their child at home with support from the hospital’s Home Care Department and Technology Dependence Center, caregivers reported more time to attend to their own needs and family activities, less financial burden, less anxiety, and perceived improvements in their child’s health and quality of life compared with hospitalization. Based on our findings, one program change was implemented: the Home Care social worker now meets with the family prior to discharge.

scholarly journals Being cared by a family member: the existential feelings of cancer patients

2015 ◽  
Vol 24 (2) ◽  
pp. 381-389 ◽  
Author(s):  
Julia Wakiuchi ◽  
Anna Maria de Oliveira Salimena ◽  
Catarina Aparecida Sales
Keyword(s):  
Home Care ◽  
Cancer Patients ◽  
Phenomenological Study ◽  
Daily Life ◽  
Care Service ◽  
Health Care Service ◽  
Phenomenological Analysis ◽  
The Other ◽  
Existential Feelings ◽  
Primary Health

The present article aimed to understand the daily life of cancer patients under palliative care while experiencing home care provided by family members. This was a Heideggerian phenomenological study with 20 patients being treated at the primary health care service of Northeast Paraná, Brazil, between November 2012 and February 2013. Data collection was based on the following research guiding question: What has been your experience of being cared for by your family? Phenomenological analysis was conducted by selecting units of meaning from statements and then selecting ontologic themes, namely: "being alone in the presence of the other" and "finding the foundation of care in love." In conclusion, when based on love and solicitude, home care coupled with palliative practices can give "wings" to those who are suffering and perceive their lives as threatened.

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