Factors associated with high care burden of primary caregivers of children with medical complexity after completing a discharge-support program in a recovery center

Fuyuki, Makiko; Yotani, Nobuyuki; Kondo, Mari; Iijima, Yoshitaka; Wada, Hiroshi; Takemoto, Kiyoshi; Funato, Masahisa; Ito, Kazuya; Shintaku, Haruo; Hamazaki, Takashi

doi:10.1016/j.braindev.2021.06.003

Cited by 3 publications

(3 citation statements)

References 17 publications

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“… 2 , 19 However, community-based LTMV programs vary widely, from well-supported to piecemeal or non-existent. 3 , 25 , 33 , 36 , 43 , 46 , 49 Variations usually are due to differences in jurisdiction and legislation, occurring at the national, state/provincial level, and/or regional/municipal level. 31 , 33 …”

Section: Resultsmentioning

confidence: 99%

“…23 Caregivers are sleep deprived, feel isolated, fatigued, can have high levels of depressive and anxiety symptoms and poor quality of lifeall which impact their relationships with the person they are caring for and other family and friends. 18,24,[35][36][37] Although this transition is stressful for the VAI and the family, they often state it is worth the effort to do so, 23 especially when there is a high level of trust during all aspects of the process. 38 It is also important to consider the family caregivers as parents/spouses/relatives/friends first, and caregivers second.…”

Section: Transition From Hospital To Homementioning

confidence: 99%

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Long-term mechanical ventilation and transitions in care: A narrative review

2023

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Objectives Individuals dependent on long-term mechanical ventilation (LTMV) for their day-to-day living are a heterogenous population who go through several transitions over their lifetime. This paper describes three transitions: 1) institution/hospital to community/home, 2) pediatric to adult care, and 3) active treatment to end-of-life for ventilator-assisted individuals (VAIs). Methods A narrative review based on literature and the author’s collective practical and research experience. Four online databases were searched for relevant articles. A manual search for additional articles was completed and the results are summarized. Results Transitions from hospital to home, pediatric to adult care, and to end-of-life for VAIs are complex and challenging processes. Although there are several LTMV clinical practice guidelines highlighting key components for successful transition, there still exists gaps and inconsistencies in care. Most of the literature and experiences reported to date have been in developed countries or geographic areas with funded healthcare systems. Conclusions For successful transitions, the VAIs and their support network must be front-and-center. There should be a coordinated, systematic, and holistic plan (including a multi-disciplinary team), life-time follow-up, with bespoke consideration of jurisdiction and individual circumstances.

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Section: Resultsmentioning

confidence: 99%

Section: Transition From Hospital To Homementioning

confidence: 99%

Long-term mechanical ventilation and transitions in care: A narrative review

2023

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“…In the current study, training families before and after discharge, forming WhatsApp groups, and introducing families to patients with similar conditions were associated with significant reductions in the reported burden of care. In a seven-year study by Fuyuki et al (2021) of parents caring for children with tracheostomies at home, caregiver burden was reported to be high; these researchers suggested a standard plan for transferring patients from hospital to home. Calderón et al (2011) found a significant positive relationship between psychological distress and anxiety due to uncertainties about care, and the psychological burden of care for families caring for patients on mechanical ventilation at home.…”

Section: Discussionmentioning

confidence: 99%

Effectiveness of a Supportive Program on Caregiver Burden of Families Caring for Patients on Invasive Mechanical Ventilation at Home: An Experimental Study

Esmaeili,

Dehghan Nayeri,

Bahramnezhad

et al. 2023

Creative Nursing

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The prevalence of patients on mechanical ventilation who are being supported at home is increasing. Due to these patients’ complex and chronic conditions, the subjective burden on their family caregivers increases after discharge. The aim of this study was to evaluate the effectiveness of a supportive home care program on the caregiver burden of families caring for patients on invasive mechanical ventilation at home. Sixty patients hospitalized in three university-affiliated hospitals in Tehran, Iran between 7/2020 and 8/2021 were randomly assigned to one of two groups: A supportive home care program, and routine hospital education. The supportive home care program included six educational sessions delivered in the hospital before discharge, and home visits and continued education after discharge. Caregiver burden was measured using the Zarit Burden Interview. Results showed that caregiver burden increased significantly ( p ≥ .001) after discharge without the supportive home care program intervention. Follow-up by nurses after discharge is essential to reduce the psychological burden of caring for patients on invasive mechanical ventilation at home.

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The Parenting Experiences of Mothers of Children with Brain Lesions and are at Risk of Aspiration

Jeon¹

2021

kjrehn

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Factors associated with high care burden of primary caregivers of children with medical complexity after completing a discharge-support program in a recovery center

Cited by 3 publications

References 17 publications

Long-term mechanical ventilation and transitions in care: A narrative review

Long-term mechanical ventilation and transitions in care: A narrative review

Effectiveness of a Supportive Program on Caregiver Burden of Families Caring for Patients on Invasive Mechanical Ventilation at Home: An Experimental Study

The Parenting Experiences of Mothers of Children with Brain Lesions and are at Risk of Aspiration

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