Paid carers' experiences of caring for mechanically ventilated children at home: implications for services and training. 2013

Christina Maddox, and David Pontin
Department of Nursing & Midwifery, Children's Nursing, Faculty of Health & Life Sciences, University of the West of England, UK.

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.

UI MeSH Term Description Entries
D007722 Health Knowledge, Attitudes, Practice Knowledge, attitudes, and associated behaviors which pertain to health-related topics such as PATHOLOGIC PROCESSES or diseases, their prevention, and treatment. This term refers to non-health workers and health workers (HEALTH PERSONNEL). Knowledge, Attitudes, Practice
D012121 Respiration, Artificial Any method of artificial breathing that employs mechanical or non-mechanical means to force the air into and out of the lungs. Artificial respiration or ventilation is used in individuals who have stopped breathing or have RESPIRATORY INSUFFICIENCY to increase their intake of oxygen (O2) and excretion of carbon dioxide (CO2). Ventilation, Mechanical,Mechanical Ventilation,Artificial Respiration,Artificial Respirations,Mechanical Ventilations,Respirations, Artificial,Ventilations, Mechanical
D004739 England A part of Great Britain within the United Kingdom.
D005260 Female Females
D006699 Home Care Services Community health and NURSING SERVICES providing coordinated multiple services to the patient at the patient's homes. These home-care services are provided by a visiting nurse, home health agencies, HOSPITALS, or organized community groups using professional staff for care delivery. It differs from HOME NURSING which is provided by non-professionals. Domiciliary Care,Home Health Care,Care Services, Home,Home Care,Services, Home Care,Care, Domiciliary,Care, Home,Home Care Service,Service, Home Care
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D018576 Home Health Aides Persons who assist ill, elderly, or disabled persons in the home, carrying out personal care and housekeeping tasks. (From Slee & Slee, Health Care Terms. 2d ed, p202) Home Care Aides,Homemaker-Home Health Aides,Aide, Home Care,Aide, Home Health,Aide, Homemaker-Home Health,Aides, Home Care,Aides, Home Health,Aides, Homemaker-Home Health,Care Aide, Home,Care Aides, Home,Health Aide, Home,Health Aide, Homemaker-Home,Health Aides, Home,Health Aides, Homemaker-Home,Home Care Aide,Home Health Aide,Homemaker Home Health Aides,Homemaker-Home Health Aide
D036301 Qualitative Research Any type of research that employs nonnumeric information to explore individual or group characteristics, producing findings not arrived at by statistical procedures or other quantitative means. (Qualitative Inquiry: A Dictionary of Terms Thousand Oaks, CA: Sage Publications, 1997) Research, Qualitative

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