Living as a family with a child on home mechanical ventilation and personal care assistants-A burdensome impact on family life.
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ABSTRACT:
SUBMITTER: Bjerregaard Alro A
PROVIDER: S-EPMC8510762 | biostudies-literature | 2021 Nov
REPOSITORIES: biostudies-literature
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Living as a family with a child on home mechanical ventilation and personal care assistants-A burdensome impact on family life.
Bjerregaard Alrø Anette A Klitnaes Charlotte C Dahl Rossau Charlotte C Dreyer Pia P
Nursing open 20210505 6
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Project description:PurposeThis study aimed to examine how young people living with Home Mechanical Ventilation experience the transition from childhood to young adulthood in relation to everyday life, perceived health and transition into adult professional healthcare.MethodsNine young adults (three females and six males aged 18-31) were interviewed, and data was primary analysed using phenomenological hermeneutics. In the actual study, data was reworked using secondary analysis as described by Beck. Two interviewees were ventilated invasively and six non-invasively, and one was treated with continuous positive airway pressure (CPAP).ResultsThe results are presented in two main categories. First; moving towards adulthood; and second, To handle changes in health and healthcare contacts. The study highlights the importance of ongoing social relations and being part of a socializing and physically active community. The transfer from paediatric to adult healthcare was solid and worked out well but was a process in which the participants struggled to find their own voice.ConclusionsThe transition into adulthood is a sensitive and challenging time for young people with HMV, but stable, close relationships and a well-organized transfer can enable this group to feel safe and able to find and use their own voice.
| S-EPMC11376296 | biostudies-literature
Project description:BackgroundIt has been shown that home mechanical ventilation improves quality of life, but it has not been widely studied which particular patient groups benefit the most from starting this type of therapy. The purpose of this prospective observational study was to evaluate quality of life change patterns 6 months after initiation of home mechanical ventilation in patients suffering from chronic respiratory failure using patient reported outcomes.MethodsWe enrolled 74 chronic respiratory failure patients starting invasive or noninvasive home mechanical ventilation through the Semmelweis University Home Mechanical Ventilation Program. Quality of life was evaluated at baseline and at 6 months after initiation of home mechanical ventilation using the Severe Respiratory Insufficiency Questionnaire.ResultsOverall quality of life showed 10.5% improvement 6 months after initiation of home mechanical ventilation (p < 0.001). The greatest improvement was observed in Respiratory complaint (20.4%, p = 0.015), Sleep and attendant symptoms (19.3%, p < 0.001), and Anxiety related subscales (14.4%, p < 0.001). Interface (invasive versus noninvasive ventilation) was not associated with improvement in quality of life (p = 0.660). Severely impaired patients showed the greatest improvement (CC = -0.328, p < 0.001). Initial diagnosis contributed to the observed change (p = 0.025), with chronic obstructive pulmonary disease and obesity hypoventilation syndrome patients showing the greatest improvement, while amyotrophic lateral sclerosis patients showed no improvement in quality of life. We found that patients who were started on long term ventilation in an acute setting, required oxygen supplementation and had low baseline quality of life, showed the most improvement during the six-month study period.ConclusionsOur study highlights the profound effect of home mechanical ventilation on quality of life in chronic respiratory failure patients that is indifferent of ventilation interface but is dependent on initial diagnosis and some baseline characteristics, like acute initiation, oxygen supplementation need and baseline quality of life.Trial registrationThis study was approved by and registered at the ethics committee of Semmelweis University (SE TUKEB 251/2017; 20th of December, 2017).
| S-EPMC7433042 | biostudies-literature
Project description:BackgroundIt is fundamental to optimize and retain health-related quality of life (HRQoL) in the long term in patients with home mechanical ventilation (HMV). Therefore, this study aimed to evaluate the evolution of the HRQoL in patients already established on HMV across a period of 5 years and whether the HRQoL is associated with mortality.MethodsThis was a 5-year longitudinal cohort study conducted in an Outpatient Ventilation Clinic. Consecutive patients on HMV for at least 30 days responded to the Severe Respiratory Insufficiency (SRI) questionnaire at inclusion and again at 5 years.ResultsA total of 104 patients were included (male 56.7%, median age 69 [P25;P75] [61;77] years). Almost half of the patients had COPD (49.0%). Patients were on HMV for a median of 43.5 [22;85.5] months, with overall good adherence (median 8 [6;9] daily hours). Fifty-seven (54.8%) patients were alive at 5 years. In surviving patients, the only difference with statistical significance was in the attendant symptoms and sleep subscale, with patients scoring 7.1 [-4.5;25] points higher in the final questionnaire (p = 0.002). Survivors had significantly better scores in the SRI at inclusion than deceased patients (median 59.6 [49.2;71.7] vs 48.7 [38.4;63.2]; p = 0.004).ConclusionsThese results shows that HRQoL remains stable in surviving patients with HMV at five years. It also suggests that SRI can be of important prognostic value and help predict the terminal phase of the disease course in patients with long-term HMV.
| S-EPMC9682680 | biostudies-literature
Project description:Home mechanical ventilation (HMV) is a treatment for chronic respiratory failure that has shown clinical and cost effectiveness in patients with underlying COPD, obesity-related respiratory failure and neuromuscular disease (NMD). By treating chronic respiratory failure with adequate adherence to HMV, improvement in patient-reported outcomes including health-related quality of life (HRQoL) have been evaluated using general and disease-specific quantitative, semi-qualitative and qualitative methods. However, the treatment response in terms of trajectory of change in HRQoL is not uniform across the restrictive and obstructive disease groups. In this review, the effect of HMV on HRQoL across the domains of symptom perception, physical wellbeing, mental wellbeing, anxiety, depression, self-efficacy and sleep quality in stable and post-acute COPD, rapidly progressive NMD (such as amyotrophic lateral sclerosis), inherited NMD (including Duchenne muscular dystrophy) and obesity-related respiratory failure will be discussed.
| S-EPMC10155047 | biostudies-literature
Project description:IntroductionSocial isolation is a major public health concern, as isolated individuals are at increased risk of poor overall health, as well as at increased risk of unhealthy behaviors. During the COVID-19 pandemic, social distancing strategies have led to increased rates of loneliness and social isolation. There is a clear need for strategies to mitigate the effects of social isolation and loneliness on the mental and physical health of older adults. In this study, we sought to better understand how voice-controlled intelligent personal assistants (VIPAs) could be leveraged to reduce loneliness and social isolation among home-bound older adults.MethodsPatients and geriatric experts were recruited to use VIPA devices (Google Home) in their homes for 4 weeks and then provide feedback. No prior training was provided. Geriatric experts were recruited via email solicitation from the Northwestern Medicine Geriatrics Clinic, and patients were solicited directly from geriatric primary care physicians. The investigators used qualitative analysis to identify codes and overarching themes.ResultsA total of 288 comments were received from 16 participants. Eight major themes were identified: Administrative, Companionship, Home Control, Education, Emergencies, Entertainment, Health and Well-Being, and Reminders.DiscussionResults demonstrate that VIPAs can be useful across multiple domains and potentially play a role in providing physical, social, and cognitive stimulation to home-bound older adults. VIPAs have a wide range of functionality, many of which could be implemented to focus on common geriatric syndromes and may ultimately be a tool to help mitigate social isolation and the consequential loneliness.
| S-EPMC9106816 | biostudies-literature
Project description:Home mechanical ventilation (HMV) is an increasingly common intervention and is initiated for a range of pathological processes, including neuromuscular disease (NMD), chronic obstructive pulmonary disease (COPD) and obesity related respiratory failure. There have been important recent data published in this area, which helps to guide practice by indicating which populations may benefit from this intervention and the optimum method of setting up and controlling sleep disordered breathing. Recent superficially conflicting data has been published regarding HMV in COPD, with a trial in post-exacerbation patients suggesting no benefit, but in stable chronic hypercapnic patients suggesting a clear and sustained mortality benefit. The two studies are critiqued and the potential reasons for the differing results are discussed. Early and small trial data is frequently contradicted with larger randomised controlled trials and this has been the case with diaphragm pacing being shown to be potentially harmful in the latest data, confirming the importance of non-invasive ventilation (NIV) in NMD such as motor neurone disease. Advances in ventilator technology have so far appeared quicker than the clinical data to support their use; although small and often unblinded, the current data suggests equivalence to standard modes of NIV, but with potential comfort benefits that may enhance adherence. The indications for NIV have expanded since its inception, with an effort to treat sleep disordered breathing as a result of chronic heart failure (HF). The SERVE-HF trial has recently demonstrated no clear advantage to this technology and furthermore detected a potentially deleterious effect, with a worsening of all cause and cardiovascular mortality in the treated group compared to controls. The review serves to provide the reader with a critical review of recent advances in the field of sleep disordered breathing and HMV.
| S-EPMC4739968 | biostudies-literature
Project description:An increasing number of patients included in home mechanical ventilation (HMV) care has been under observation for many years. The study aimed to assess the patients opinion concerning the expected and perceived quality of care in an HMV system and a patient's satisfaction with care. In 2017, patients treated with HMV were surveyed in Poland with the modified SERVQUAL questionnaire. One hundred correctly completed surveys were analyzed. Patient Satisfaction Index was high. In every examined area, the expectations were statistically significant larger than the perception of the services. The biggest gap was in the tangibility dimension and the smallest gap was in the empathy dimension. Perceived respect and understanding for a patient's needs are close to the expectations. The level of satisfaction with health care among patients treated with HMV in majority of investigated components is high. Moreover, the difference between perceived and expected quality of health care in the HMV system was relatively small in the opinion of the patients themselves. Further investigations with alternative methods are needed.
| S-EPMC8069923 | biostudies-literature
Project description:BackgroundThis study examined factors associated with potentially burdensome end-of-life (EOL) transitions between care settings among older adults with advanced cancer in nursing homes (NHs).MethodsA retrospective analysis of deceased older NH residents with poor-prognosis solid tumors was conducted with Medicare claims and the Minimum Data Set. A potentially burdensome transition was defined as 2 or more hospitalizations or an intensive care unit admission in the last 90 days of life.ResultsAmong 34,670 subjects, many had moderate to severe cognitive impairment (53.8%), full dependence in activities of daily living (ADLs; 66.5%), and comorbidities such as congestive heart failure (CHF; 29.3%) and chronic obstructive pulmonary disease (34.1%). Only 56.3% of the patients used hospice at any time in the 90 days before death; 36.0% of the patients experienced a potentially burdensome EOL transition, and this was higher among patients who did not receive hospice (45.4% vs 28.7%; P < .01). In multivariable analyses, full dependence in ADLs (odds ratio [OR], 1.70; P < .01), CHF (OR, 1.48; P < .01), and chronic obstructive pulmonary disease (OR, 1.28; P < .01) were associated with a higher risk of burdensome EOL transitions. Those with do-not-resuscitate directives (OR, 0.60; P < .01) and impaired cognition (OR, 0.89; P < .01) had lower odds of burdensome EOL transitions.ConclusionsNH residents with advanced cancer have substantial comorbidities and functional impairment, yet more than a third experience potentially burdensome EOL transitions. These findings help to identify a population at risk for poor EOL outcomes in order to target interventions, and they point to the importance of advanced care planning in this population.
| S-EPMC7306135 | biostudies-literature
Project description: Not available
| S-EPMC8689429 | biostudies-literature
Project description: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.
| S-EPMC4904519 | biostudies-literature