Personal care assistants’ lived experience of working in the home setting with children and adults on mechanical ventilation

Author(s):  
Anette Bjerregaard Alrø ◽  
Charlotte Klitnæs ◽  
Pia Dreyer
2017 ◽  
Author(s):  
Susie Donnelly ◽  
Brenda Reginatto ◽  
Oisin Kearns ◽  
Marie Mc Carthy ◽  
Bill Byrom ◽  
...  

BACKGROUND Despite an aging population, older adults are typically underrecruited in clinical trials, often because of the perceived burden associated with participation, particularly travel associated with clinic visits. Conducting a clinical trial remotely presents an opportunity to leverage mobile and wearable technologies to bring the research to the patient. However, the burden associated with shifting clinical research to a remote site requires exploration. While a remote trial may reduce patient burden, the extent to which this shifts burden on the other stakeholders needs to be investigated. OBJECTIVE The aim of this study was to explore the burden associated with a remote trial in a nursing home setting on both staff and residents. METHODS Using results from a grounded analysis of qualitative data, this study explored and characterized the burden associated with a remote trial conducted in a nursing home in Dublin, Ireland. A total of 11 residents were recruited to participate in this trial (mean age: 80 years; age range: 67-93 years). To support research activities, we also recruited 10 nursing home staff members, including health care assistants, an activities co-ordinator, and senior nurses. This study captured the lived experience of this remote trial among staff and residents and explored the burden associated with participation. At the end of the trial, a total of 6 residents and 8 members of staff participated in semistructured interviews (n=14). They reviewed clinical data generated by mobile and wearable devices and reflected upon their trial-related experiences. RESULTS Staff reported extensive burden in fulfilling their roles and responsibilities to support activities of the trial. Among staff, we found eight key characteristics of burden: (1) comprehension, (2) time, (3) communication, (4) emotional load, (5) cognitive load, (6) research engagement, (7) logistical burden, and (8) product accountability. Residents reported comparatively less burden. Among residents, we found only four key characteristics of burden: (1) comprehension, (2) adherence, (3) emotional load, and (4) personal space. CONCLUSIONS A remote trial in a nursing home setting can minimize the burden on residents and enable inclusive participation. However, it arguably creates additional burden on staff, particularly where they have a role to play in locally supporting and maintaining technology as part of data collection. Future research should examine how to measure and minimize the burden associated with data collection in remote trials.


1987 ◽  
Vol 15 (4) ◽  
pp. 351
Author(s):  
W. Andrew Kofke ◽  
Michael T. Snider ◽  
John A. Gildersleeve ◽  
Robert H. Malte ◽  
Cheryl Chapman ◽  
...  

2002 ◽  
Vol 7 (4) ◽  
Author(s):  
Portia J Jordan ◽  
Dalena Van Rooyen ◽  
Johanita Strümpher

Patients connected to a mechanical ventilator have to endure various experiences and emotions, which are unique to each patient. Opsomming Pasiënte wat aan ‘n meganiese ventilator gekoppel is, moet verskeie emosies en ervarings deurmaak, wat aan elke persoon uniek is. *Please note: This is a reduced version of the abstract. Please refer to PDF for full text.


2007 ◽  
Vol 28 (8) ◽  
pp. 910-915 ◽  
Author(s):  
Carol E. Chenoweth ◽  
Laraine L. Washer ◽  
Kumari Obeyesekera ◽  
Candace Friedman ◽  
Karolyn Brewer ◽  
...  

Objective.To describe the rate of infection, associated organisms, and potential risk factors for ventilator-associated pneumonia (VAP) in patients receiving mechanical ventilation at home.Design.Retrospective cohort study.Setting.University-affiliated home care service.Patients.Patients receiving mechanical ventilation at home from June 1995 through December 2001.Results.Fifty-seven patients underwent ventilation at home for a total of 50,762 ventilator-days (mean ± SD, 890.6 ± 644.43 days; range, 76-2,458 days). Seventy-nine episodes of VAP occurred in 27 patients (rate, 1.55 episodes per 1,000 ventilator-days). The first episode of VAP occurred after a mean (±SD) of 245 ± 318.07 ventilator-days. VAP was most common during the first 500 days of ventilation. Rates of VAP were higher among patients who required ventilation for longer daily durations, compared with those who required it for shorter daily durations. There was no association of VAP with age, sex, underlying disease, reason for ventilation, antacid therapy, or steroid use. Microorganisms isolated from 33 episodes of VAP with available culture results included Pseudomonas species (17 isolates), Staphylococcus aureus (11), Serratia species (7), and Stenotrophomonas species (5). Eight patients died during the study; no deaths were attributed to pneumonia.Conclusions.Although the organisms associated with VAP in the home setting are similar to those associated with hospital-acquired VAP, the incidence and mortality is much lower in the home care setting. Interventions to reduce the risk of VAP among patients receiving home care should be focused on patients who require ventilation for longer daily durations or who are new to receiving mechanical ventilation at home.


2020 ◽  
Vol 20 (4) ◽  
pp. 291-297
Author(s):  
Karolina Szatkowska ◽  

The constant progress of medicine makes it possible to create safe and comfortable conditions for home treatment for mechanically ventilated patients with chronic respiratory failure. The specificity of such care presents caregivers with challenges related to many nursing and organizational activities. Caring for patients using respiratory therapy is associated with taking responsibility for its course, reorganising everyday life and changing the way of performing the current roles, including limiting social roles. Therefore, it requires caregivers to be able to cope with various, very often new tasks, which can be physically and mentally burdening. The burden of care is the entirety of experiences and difficulties that a family member encounters when caring for a loved one. The article aims to characterise the concept of the feeling of being burdened with care and to present a research review showing its specificity in the group of caregivers of mechanically ventilated patients in a home setting. Also, the study will present research reports indicating a group of factors that may increase this negative consequence of care. The risk factors include health deterioration in the mechanically ventilated person and the decreasing level of patient’s independent functioning, as well as factors associated with the mechanical ventilation used: the method of ventilation (invasive vs. non-invasive), longer time of using the ventilator per day and the total duration of mechanical ventilation as a treatment method. Moreover, the results of the research conducted so far indicate that the burden among caregivers of these patients may manifest in all spheres of life: emotional, cognitive, somatic and social.


Sign in / Sign up

Export Citation Format

Share Document