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?My Baby Is a Person?: Parents' Experiences with Life-Threatening Fetal Diagnosis.
MedLine Citation:
PMID:  22077542     Owner:  NLM     Status:  Publisher    
Abstract/OtherAbstract:
Abstract Diagnosis of a lethal fetal diagnosis (LFD) early in pregnancy is devastating for parents. Those who choose to continue with the pregnancy report intense emotional reactions and inconsistent, often insensitive treatment by health care providers. This qualitative descriptive study sought to clarify the experiences and needs of families in order to design responsive perinatal palliative care services, and to establish the feasibility and acceptability of conducting intensive interviews of pregnant women and their partners during their pregnancy with a LFD. We interviewed 2 women and 3 couples during pregnancy or just after birth, using open ended questions. Audiotaped responses were analyzed by two investigators. Two dimensions and six themes emerged. In the dimension of Personal Pregnancy Experience, ?Grieving Multiple Losses? elucidates that parents grieve the loss of their normal pregnancy, healthy baby and future parenting. ?Arrested Parenting? describes their sudden interruption in the normal process of becoming a parent. The theme ?My Baby is a Person? reflects parents' unanimous desire to honor and legitimize the humanity of their unborn baby. In the dimension of Interactions of Others, three themes were found. ?Fragmented Health Care? describes parent's disjointed and distant encounters with multiple providers. ?Disconnected Family and Friends? describes the lack of understanding of what the families were experiencing. ?Utterly Alone,? which crosses both dimensions, expresses how the parents' sense of social isolation adds to their personal sense of loss and loneliness. Recommendations are made for palliative care's role in respecting and validating the experience of parents living through a doomed pregnancy.
Authors:
Denise C T-Arsenault; Erin Denney-Koelsch
Publication Detail:
Type:  JOURNAL ARTICLE     Date:  2011-11-11
Journal Detail:
Title:  Journal of palliative medicine     Volume:  -     ISSN:  1557-7740     ISO Abbreviation:  -     Publication Date:  2011 Nov 
Date Detail:
Created Date:  2011-11-14     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9808462     Medline TA:  J Palliat Med     Country:  -    
Other Details:
Languages:  ENG     Pagination:  -     Citation Subset:  -    
Affiliation:
University of Rochester Medical Center , Rochester, New York.
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