Psychosocial Well-Being of Informal Caregivers of Adults Receiving Home Mechanical Ventilation: A Scoping Review

Abstract

Background/Objectives: Home mechanical ventilation (HMV) is a therapeutic approach that enables individuals with chronic respiratory failure to be cared for in home settings, thereby improving their quality of life. However, it also imposes a substantial burden on informal caregivers. This scoping review aimed to explore and synthesize current research on the psychosocial well-being of informal caregivers of adults receiving HMV and to identify existing knowledge gaps. Methods: Following PRISMA-ScR guidelines, six electronic databases were systematically searched without language or date restrictions. Eligible studies were original, peer-reviewed publications focusing on informal caregivers of adults receiving HMV. Relevant data were extracted and analyzed. Results: A total of 38 studies met the inclusion criteria. The majority of caregivers were women, most commonly spouses or partners. Caregivers frequently experienced high levels of burden, anxiety, depression, fatigue, and reduced quality of life. Common challenges included social isolation, sleep disturbances, and financial difficulties. Caregivers employed a range of coping strategies, both adaptive and maladaptive. Many reported unmet needs, particularly in the areas of psychological, informational, and professional support. Conclusions: Providing care for individuals receiving HMV is complex and demanding. While some caregivers find meaning and fulfillment in their role, many experience significant physical, emotional, and psychological challenges. These findings highlight the urgent need for comprehensive, individualized interventions aimed at reducing caregiver burden, enhancing quality of life, and ensuring better integration of caregivers into the broader care continuum.