Personal care assistants’ experiences of caring for people with home mechanical ventilation

BACKGROUND Research which focus personal care assistants’ (PCA) experience of caring for people with HMV are sparse. Today’s trend to move advanced care from hospital to home will continue to expand. This study will create knowledge about a growing group of PCAs working within this area. Developments in medical technology, care and treatment have increased the survival of people with serious illnesses or injuries which have contributed to a shift of health care interventions. This means that a raising numbers of technology-assisted people with chronic illnesses can live their lives in their own homes. One such group comprises those using HMV. Ventilator support may be required either during sleep or over 24 hours invasively (with tracheostomy) or non-invasively (with a facemask). AIM The aim of this study was to describe PCAs’ experiences of working with a ventilator-assisted person (adult or child) at home. METHOD Fifteen semi- structured interviews with PCAs supporting a child or adult using home mechanical ventilation (HMV) were conducted. Two men and thirteen women participated. Their working experience with HMV users ranged from one to 17 years (median 6 years). The analysis has an inductive and interpretive approach to qualitative content analysis as described by Elo and Kyngäs. RESULTS The results are presented as five categories: 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. CONCLUSION There is international consensus that advanced home care will continue to expand. Well-prepared PCAs is a prerequisite in this development which brings into focus issues concerning organization, management and the field of knowledge and responsibilities of the PCAs. It is important to gain more knowledge and understanding of the field in order to plan and perform good quality care