PMID- 27858211
OWN - NLM
STAT- MEDLINE
DCOM- 20180910
LR  - 20181202
IS  - 1573-3599 (Electronic)
IS  - 1059-7700 (Linking)
VI  - 26
IP  - 3
DP  - 2017 Jun
TI  - Factors Influencing the Decision-Making Process and Long-Term Interpersonal 
      Outcomes for Parents Who Undergo Preimplantation Genetic Diagnosis for Fanconi 
      Anemia: a Qualitative Investigation.
PG  - 640-655
LID - 10.1007/s10897-016-0032-0 [doi]
AB  - Fanconi anemia (FA) is characterized by congenital malformations, progressive 
      bone marrow failure, and predisposition to malignancy. Hematopoietic stem cell 
      transplantation is used to treat FA, and best results are attained with sibling 
      donors who are human leukocyte antigen (HLA) identical matches. Preimplantation 
      genetic diagnosis (PGD) offers parents of an affected child the opportunity to 
      have an unaffected child who is an HLA match. While some research has 
      investigated parents' experiences during the PGD process, no published studies 
      specifically address factors influencing their decision-making process and 
      long-term interpersonal outcomes. The aims of this study are to: (1) examine 
      parents' expectations and the influence of media, bioethics, and religion on 
      their decision to undergo PGD; (2) examine parents' social support and emotional 
      experiences during their PGD process; and (3) characterize long-term effects of 
      PGD on relationship dynamics (partner, family, friends), others' attitudes, and 
      parental regret. Nine parents participated in semi-structured interviews. 
      Thematic analysis revealed their decision to use PGD was variously influenced by 
      media, bioethics, and religion, in particular, affecting parents' initial 
      confidence levels. Moreover, the PGD process was emotionally complex, with 
      parents desiring varying amounts and types of support from different sources at 
      different times. Parents reported others' attitudes towards them were similar or 
      no different than before PGD. Parental regret regarding PGD was negligible. 
      Results of this study will promote optimization of long-term care for FA 
      families.
FAU - Haude, K
AU  - Haude K
AD  - GeneDx, Gaithersburg, MD, USA.
FAU - McCarthy Veach, P
AU  - McCarthy Veach P
AD  - Department of Genetics, Cell Biology, and Development, University of Minnesota - 
      Twin Cities, 321 Church Street SE, Jackson Hall, Minneapolis, MN, 55455, USA.
FAU - LeRoy, B
AU  - LeRoy B
AD  - Department of Genetics, Cell Biology, and Development, University of Minnesota - 
      Twin Cities, 321 Church Street SE, Jackson Hall, Minneapolis, MN, 55455, USA.
FAU - Zierhut, H
AU  - Zierhut H
AUID- ORCID: 0000-0003-1941-664X
AD  - Department of Genetics, Cell Biology, and Development, University of Minnesota - 
      Twin Cities, 321 Church Street SE, Jackson Hall, Minneapolis, MN, 55455, USA. 
      zier0034@umn.edu.
LA  - eng
PT  - Journal Article
DEP - 20161117
PL  - United States
TA  - J Genet Couns
JT  - Journal of genetic counseling
JID - 9206865
SB  - IM
MH  - Adult
MH  - *Decision Making
MH  - Fanconi Anemia/*diagnosis/*genetics
MH  - Female
MH  - Humans
MH  - Male
MH  - *Parents/psychology
MH  - Pregnancy
MH  - *Preimplantation Diagnosis/psychology
MH  - Qualitative Research
OTO - NOTNLM
OT  - Decision-making
OT  - Decisional regret
OT  - Fanconi anemia
OT  - Human leukocyte antigen
OT  - Long-term interpersonal outcomes
OT  - Parents
OT  - Preimplantation genetic diagnosis
EDAT- 2016/11/20 06:00
MHDA- 2018/09/11 06:00
CRDT- 2016/11/19 06:00
PHST- 2016/04/22 00:00 [received]
PHST- 2016/10/05 00:00 [accepted]
PHST- 2016/11/20 06:00 [pubmed]
PHST- 2018/09/11 06:00 [medline]
PHST- 2016/11/19 06:00 [entrez]
AID - 10.1007/s10897-016-0032-0 [pii]
AID - 10.1007/s10897-016-0032-0 [doi]
PST - ppublish
SO  - J Genet Couns. 2017 Jun;26(3):640-655. doi: 10.1007/s10897-016-0032-0. Epub 2016 
      Nov 17.