title: Paid carers' experiences of caring for mechanically ventilated children at home: implications for services and training.
abstract: UK survival rates for long-term mechanically ventilated children have increased and paid carers are trained to care for them at home, however there is limited literature on carers' training needs and experience of sharing care. Using a qualitative abductive design, we purposively sampled experienced carers to generate data via diaries, semi-structured interviews, and researcher reflexive notes. Research ethics approval was granted from NHS and University committees. Five analytical themes emerged - Parent as expert; Role definition tensions; Training and Continuing Learning Needs; Mixed Emotions; Support Mechanisms highlighting the challenges of working in family homes for carers and their associated learning needs. Further work on preparing carers to share feelings with parents, using burnout prevention techniques, and building confidence is suggested. Carers highlight the lack of clinical supervision during their night-working hours. One solution may be to provide access to registered nurse support when working out-of-office hours.
authors.affiliation: Department of Nursing & Midwifery, Children's Nursing, Faculty of Health & Life Sciences, University of the West of England, UK.
authors.forename: Christina
authors.initials: C
authors.lastname: Maddox
authors.forename: David
authors.initials: D
authors.lastname: Pontin
mesh_terms: D004739:England; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006699:Home Care Services; D018576:Home Health Aides / Q000523:psychology*; D006801:Humans; D036301:Qualitative Research; D012121:Respiration, Artificial / Q000451:nursing*
keywords: Carers; children; home care; long-term ventilation; qualitative