title: Perspectives of family caregivers in home mechanical ventilation: „That I’ll be taken seriously and that I not only have to carry the burden“
abstract: Background: In Germany, Home Mechanical Ventilation (HMV) becomes more important, but there is only little knowledge about the situation of family caregivers involved in this form of care. Aim: To gain insights into the situation of family caregivers involved in HMV and to understand and reflect upon their roles and functions. Method: As part of a multi-part qualitative study problem-centered interviews with family caregivers (N = 15) of patients in HMV have been conducted and analysed thematically following principles used in Grounded Theory. Results: Family caregivers provide a broad spectrum of health care services in HMV with varying width and demand (i. e. housekeeping, organisation, nursing and therapeutic tasks). The division of tasks and responsibilities between nurses and family caregivers seems to be unclear in many cases and their limits of expertise is not reflected carefully. Family caregivers wish to be supported by nurses in their competency development process, but offers (if there are some) are often not really helpful from their point of view. Conclusions: Family caregivers engaged in HMV should be valued as partners with special expertise and not as petitioner or just burdened people. A needs-based support of family caregivers should therefore focus on partnership and targeted promotion of their special expertise.
authors.affiliation: 1 Fachbereich 4: Soziale Arbeit und Gesundheit, Frankfurt University of Applied Sciences.
authors.forename: Julia
authors.initials: J
authors.lastname: Lademann
authors.affiliation: 2 Institut für Gesundheits- und Pflegewissenschaft, Charité - Universitätsmedizin Berlin.
authors.forename: Christiane
authors.initials: C
authors.lastname: Schaepe
authors.affiliation: 2 Institut für Gesundheits- und Pflegewissenschaft, Charité - Universitätsmedizin Berlin.
authors.forename: Michael
authors.initials: M
authors.lastname: Ewers
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D066296:Grounded Theory; D006301:Health Services Needs and Demand; D018575:Home Care Services, Hospital-Based; D006801:Humans; D008297:Male; D008875:Middle Aged; D024802:Nurse's Role / Q000523:psychology; D011368:Professional-Family Relations; D036301:Qualitative Research; D012121:Respiration, Artificial / Q000451:nursing* / Q000523:psychology*
keywords: family caregivers; home mechanical ventilation; häusliche Beatmung; pflegende Angehörige