Zwischen Himmel und Hölle: Erfahrungen von Eltern mit einem kritisch kranken Kind mit extrakorporaler Membranoxygenierung (ECMO) - Eine qualitative-explorative Studie mit Paarinterviews. 2020

Yvonne Kröger, and Gaby Stoffel, and Marie-Madlen Jeitziner, and Iren Bischofberger, and Karin van Holten
Universitäts-Kinderspital Zürich.

Between Heaven and Hell: Experiences of parents with a critically ill child with extracorporeal membrane oxygenation (ECMO) - A qualitative-explorative study with couple interviews Abstract. Background: It is a traumatic experience for parents when their child's severe illness necessitates a period of intensive care. This situation becomes even more challenging for parents if a highly technical therapy such as extracorporeal membrane oxygenation (ECMO) in the Pediatric Intensive Care Unit is required. Aim: The study explores the experiences of parents of critically ill children undergoing ECMO therapy with the aim of better understanding their needs and identifying courses of action for healthcare professionals. Method: The qualitative-explorative study was based on interviews with six couples whose critically ill child is or has been receiving ECMO during the last year, which were used to examine their experiences. The analysis of six such interviews was performed using intensive paraphrasing and inductive coding. Results: The parents' situation can be best characterised as ambivalent with simultaneous feelings of hope and fear. They recognize the danger to their child's life, leading to intense feelings of helplessness with strong emotional reactions. It becomes apparent that there is too little fit between the emotional world of the parents and the action patterns of the health care professionals. Conclusions: The health care professionals thinking logic is based on professional criteria, such as the life threat and risks of ECMO, which ignores the emotional needs of the parents. For this reason, it is important to be more sensitive to the parents and to share positive little signs about their child' s state of health and ability to suffer with them.

UI MeSH Term Description Entries
D010290 Parents Persons functioning as natural, adoptive, or substitute parents. The heading includes the concept of parenthood as well as preparation for becoming a parent. Step-Parents,Parental Age,Parenthood Status,Stepparent,Age, Parental,Ages, Parental,Parent,Parental Ages,Status, Parenthood,Step Parents,Step-Parent,Stepparents
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D003422 Critical Care Health care provided to a critically ill patient during a medical emergency or crisis. Intensive Care,Intensive Care, Surgical,Surgical Intensive Care,Care, Critical,Care, Intensive,Care, Surgical Intensive
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults
D015199 Extracorporeal Membrane Oxygenation Application of a life support system that circulates the blood through an oxygenating system, which may consist of a pump, a membrane oxygenator, and a heat exchanger. Examples of its use are to assist victims of SMOKE INHALATION INJURY; RESPIRATORY FAILURE; and CARDIAC FAILURE. ECMO Extracorporeal Membrane Oxygenation,Oxygenation, Extracorporeal Membrane,Venoarterial ECMO,Venoarterial Extracorporeal Membrane Oxygenation,Venovenous ECMO,Venovenous Extracorporeal Membrane Oxygenation,ECLS Treatment,ECMO Treatment,Extracorporeal Life Support,ECLS Treatments,ECMO Treatments,ECMO, Venoarterial,ECMO, Venovenous,Extracorporeal Life Supports,Extracorporeal Membrane Oxygenations,Life Support, Extracorporeal,Membrane Oxygenation, Extracorporeal,Treatment, ECLS,Treatment, ECMO,Venoarterial ECMOs,Venovenous ECMOs
D015278 Intensive Care Units, Pediatric Hospital units providing continuous surveillance and care to acutely ill infants and children. Neonates are excluded since INTENSIVE CARE UNITS, NEONATAL is available. ICU, Pediatric,Pediatric ICU,Pediatric Intensive Care Unit,Pediatric Intensive Care Units,ICUs, Pediatric,Pediatric ICUs
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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