Personal care assistants' experiences of caring for people on home mechanical ventilation

Aim The aim of this study was to describe personal care assistants' (PCA) experiences of working with a ventilator‐assisted person at home. Methods Data were collected from fifteen audiotaped semistructured interviews with PCAs supporting a child or adult using home mechanical ventilation (HMV). Thirteen women and two men participated; their working experience with HMV users ranged from one to 17 years (median 6 years). Data were subjected to qualitative content analysis in an inductive and interpretive manner. Findings Five categories emerged from the data: Being part of a complex work situation; Taking on a multidimensional responsibility; Caring carried out in someone's home; Creating boundaries in an environment with indistinct limits; and Being close to another's body and soul. Conclusions The participants felt very close to the person they worked with, both physically and emotionally. They had a great responsibility and therefore a commensurate need for support, guidance and a well‐functioning organisation around the HMV user. There is international consensus that advanced home care will continue to expand and personal care assistance is key in this development. We suggest that one way to move forward for PCAs working with HMV users is to create multiprofessional teams led by a key‐person who coordinates the individual needs. More research is needed within this area from a broad perspective including the HMV‐assisted persons, relatives, personal care assistants and management organisations.