Document Detail

What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants.
MedLine Citation:
PMID:  12219402     Owner:  NLM     Status:  MEDLINE    
The aim of this article is to generate knowledge about parents' participation in life-and-death decisions concerning their very premature and/or critically ill infants in hospital neonatal units. The question is: what are parents' attitudes towards their involvement in such decision making? A descriptive study design using in-depth interviews was chosen. During the period 1997-2000, 20 qualitative interviews with 35 parents of 26 children were carried out. Ten of the infants died; 16 were alive at the time of the interview. The comparative method (grounded theory) was used to analyse the data. The analysis was carried out continuously and in parallel with data collection. Six categories were revealed by the analysis: indecision and uncertainty (ambivalence); information and communication; participate, but do not decide; seeming to be included; the parents' child; and individual consideration. The findings appear to indicate that parents agree that they should not have the final word in decisions concerning their infants' future life or death. Such a responsibility would put too heavy a burden on parents who lack the medical knowledge and the professional experience needed to make such a decision, and would be likely to lead to them experiencing strong feelings of guilt. The findings show that parents should be well informed and listened to during the whole decision-making process. Their primary concern was how nurses and physicians communicate with parents who are experiencing a crisis, and how this serious information is presented.
Berit Støre Brinchmann; Reidun Førde; Per Nortvedt
Publication Detail:
Type:  Journal Article    
Journal Detail:
Title:  Nursing ethics     Volume:  9     ISSN:  0969-7330     ISO Abbreviation:  Nurs Ethics     Publication Date:  2002 Jul 
Date Detail:
Created Date:  2002-09-10     Completed Date:  2002-11-04     Revised Date:  2004-11-18    
Medline Journal Info:
Nlm Unique ID:  9433357     Medline TA:  Nurs Ethics     Country:  England    
Other Details:
Languages:  eng     Pagination:  388-404     Citation Subset:  E; N    
University of Oslo, Norway.
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MeSH Terms
Adaptation, Psychological*
Attitude to Death*
Attitude to Health*
Conflict (Psychology)
Decision Making*
Ethics, Nursing
Infant, Newborn
Infant, Premature*
Intensive Care, Neonatal / psychology
Nursing Methodology Research
Nursing Staff, Hospital / psychology
Parents / psychology*
Power (Psychology)
Professional-Family Relations

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