Home mechanical ventilation: back to basics

Park, Sunghoon; Suh, Eui‐Sik

doi:10.4266/acc.2020.00514

Cited by 14 publications

(5 citation statements)

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“… 14 Permanent ventilation was defined as ventilatory support for more than 16 h per day for more than 21 continuous days, invasive or non-invasive. 6 15 Pulmonary function tests and arterial blood gas monitoring were performed regularly by a pulmonary rehabilitation specialist every 3–6 months. Oxygen dependence, as well as the need for different ventilator settings or tracheostomy, was also evaluated.…”

Section: Methodsmentioning

confidence: 99%

Nusinersen for Spinal Muscular Atrophy Type I with Chronic Respiratory Failure: A Retrospective Study in South Korea

Shin,

Na,

Lee

et al. 2023

Yonsei Med J

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Purpose To analyze the efficacy and safety of nusinersen in patients with spinal muscular atrophy (SMA) type I with chronic respiratory failure. Materials and Methods We retrospectively reviewed seven patients diagnosed with SMA type I and chronic respiratory failure who were on permanent ventilation and treated with nusinersen at Gangnam Severance Hospital between January 2018 and July 2023. Patient demographics and clinical characteristics were recorded, and treatment progress was evaluated according to Hammersmith Infant Neurological Examination (HINE-2) and Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP-INTEND) scores. Results Patients initially developed hypotonia at a mean age of 3.7 months. Mean age at start of nusinersen was 7.3 years; the mean duration of follow-up after starting nusinersen was 46.2 months. At 6-, 18-, 38-, 58-, and 74-month follow-up, the mean changes in CHOP-INTEND scores were 1.0, 2.9, 1.8, 1.5, and 1.5, respectively, and the proportions of patients who showed disease amelioration were 28.6%, 71.4%, 75.0%, 100%, and 100%, respectively. Conclusion Nusinersen is safe and effective in patients with SMA type I, even those with chronic respiratory failure and those on permanent ventilation. No significant adverse effects of nusinersen were observed.

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Section: Methodsmentioning

confidence: 99%

Nusinersen for Spinal Muscular Atrophy Type I with Chronic Respiratory Failure: A Retrospective Study in South Korea

Shin,

Na,

Lee

et al. 2023

Yonsei Med J

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“…According to definition, LTMV must be carried out daily for a period of at least three months. Treatment takes place mainly in homes or long-term facilities [ 1 , 2 ].…”

Section: Introductionmentioning

confidence: 99%

“…Patients can be assigned to HMV only when causal treatment is completed [ 3 ]. Common indications for HMV treatment include neuromuscular diseases (e.g., Duchenne muscular dystrophy, Becker muscular dystrophy, and myasthenia gravis), obstructive lung diseases (e.g., Chronic Obstructive Pulmonary Disease), and obesity-related respiratory failure [ 1 ]. Increasing numbers of patients who require prolonged mechanical ventilation at home, despite the benefits of this form of treatment, are challenging for both patients and their caregivers [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

Burden, social support, and coping strategies in family caregivers of individuals receiving home mechanical ventilation: a cross-sectional study

Płaszewska-Żywko,

Fajfer-Gryz,

Cichoń

et al. 2024

BMC Nurs

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Background Home mechanical ventilation (HMV) is a treatment method for patients with chronic respiratory failure. HMV is a challenge for both patients and their caregivers. Some studies have shown a higher risk of depression, job loss, or lifestyle disturbance in family members caring for HMV patients. The purpose of the study was to measure caregiver burden, perceived social support, and coping strategies. Methods In the cross-sectional study, 58 caregivers (65.52% female) of HMV patients treated at five healthcare institutions were surveyed. The questionnaires including patient/caregiver demographic data, the type and duration of MV, the Caregiver Burden Scale (CBS), the Social Support Scale (SSS), and the Brief-COPE questionnaire were applied. For statistical analysis, the Mann‒Whitney U test, the Kruskal‒Wallis H test, Dunn’s test, and Spearman correlations were used. Results In the CBS, a high level of burden was observed mainly in the isolation and disappointment subscales. The female caregivers achieved a higher score for general strain than did the male caregivers (p = 0.023). Differences in the distribution of the isolation (p = 0.028) and disappointment (p = 0.03) variables between the financial situation groups were observed. The older the patient, the lower the burden in the domains of isolation (p = 0.015) and disappointment (p = 0.005) was elicited. Invasive MV was associated with greater burdens of general strain (p = 0.005), isolation (p = 0.001), and disappointment (p = 0.001). A medium total SSS score was shown (74.5 ± 7.56). Caregivers used various coping strategies. The most common were planning, acceptance, and active coping. Self-blame and denial were positively related to several CBS subscales, whereas acceptance of difficult situations and positive reframing were related to lower scores. Conclusions Caregivers most frequently experienced a medium level of burden. Female caregivers were characterized by higher level of burden. Invasive ventilation increased the burden. Respondents who assessed their financial situations as good, had lower burden in the selected subscales. Using some positive coping strategies may reduce the level of burden. Interventions to ensure that caregivers overcome these burdens should be undertaken.

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“…It is known that chronic respiratory failure diseases with alveolar hypoventilation, such as neuromuscular and chest wall diseases, obstructive airway diseases, and obesity-related respiratory failure, are important reasons for the use of home-type MV. 2 , 3…”

Section: Introductionmentioning

confidence: 99%

Adaptation of Caregivers of Individuals on Mechanical Ventilation to Caregiving Role

Bulut,

Avci,

Aydin

2023

Indian Journal of Critical Care Medicine

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Aim The aim of this study is to investigate the adaptation of caregivers of individuals on mechanical ventilation (MV) at home to their caregiver role. Study design The phenomenological research method, one of the qualitative research methods, was employed in the study. Materials and methods The sample consisted of 21 individuals who agreed to participate in the research. Necessary legal permissions were obtained to conduct the study. Results The data were analyzed according to the Roy adaptation model (RAM). Accordingly, the domains of the RAM were expressed with the following themes: Physiologic domain: The effects of care on the caregiver (reluctance toward self-care, psychological fatigue, insomnia, and limitation of social life); Self-concept domain: Supportive situations (trust in God and spiritual practices) and non-supportive situations (fear of losing and self-blame); Role-function domain: Adaptation of the caregiver role (thinking no one else can give similar care) and maladaptation of the caregiver role (fear of failing to cope with suddenly emerging situations, failing to fulfill roles and responsibilities, and economic inadequacy); Interdependence domain: Receiving support (support of healthcare professionals and support of family members) and lack of support (inadequacy of health services and loneliness). Conclusion It was concluded that individuals who provided care for patients on MV experienced many difficulties and that these difficulties increased their care burden and made it difficult to adapt to their caregiving roles. How to cite this article Aydin M, Bulut TY, Avcİ İA. Adaptation of Caregivers of Individuals on Mechanical Ventilation to Caregiving Role. Indian J Crit Care Med 2024;28(1):41–47.

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Home mechanical ventilation: back to basics

Cited by 14 publications

References 50 publications

Nusinersen for Spinal Muscular Atrophy Type I with Chronic Respiratory Failure: A Retrospective Study in South Korea

Nusinersen for Spinal Muscular Atrophy Type I with Chronic Respiratory Failure: A Retrospective Study in South Korea

Burden, social support, and coping strategies in family caregivers of individuals receiving home mechanical ventilation: a cross-sectional study

Adaptation of Caregivers of Individuals on Mechanical Ventilation to Caregiving Role

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