"Did you find that out in time?": New life trajectories of parents who choose to continue a pregnancy where a genetic disorder is diagnosed or likely

被引:25
作者
Hickerton, Chriselle L. [2 ]
Aitken, MaryAnne [2 ]
Hodgson, Jan [2 ]
Delatycki, Martin B. [1 ,2 ,3 ]
机构
[1] Royal Childrens Hosp, Murdoch Childrens Res Inst, Bruce Lefroy Ctr Genet Hlth Res, Parkville, Vic 3052, Australia
[2] Univ Melbourne, Dept Paediat, Parkville, Vic 3052, Australia
[3] Austin Hlth, Dept Clin Genet, Heidelberg, Vic, Australia
关键词
prenatal diagnosis; disability; attitudes; continuing pregnancy; parents; qualitative research; genetic diagnosis; trajectory; PRENATAL-DIAGNOSIS; DOWN-SYNDROME; FETAL-ABNORMALITY; CARE PROVIDERS; TERMINATION; PERCEPTIONS; DISABILITY; DECISIONS; ATTITUDES; WOMEN;
D O I
10.1002/ajmg.a.34399
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
The availability of tests to detect genetic conditions prenatally has expanded considerably in recent decades. These advances allow women and couples choices; the choice of whether or not to undergo prenatal screening or diagnosis and therefore the choice whether to continue or terminate a pregnancy. Following prenatal testing many people choose to terminate an affected pregnancy, however little is known about the experiences of parents who choose to continue such a pregnancy. This exploratory qualitative study involved in-depth interviews with five mothers and four fathers who experienced a pregnancy where a genetic diagnosis was, or could have been, detected prenatally. Transcripts of the interviews were analyzed using thematic analysis. While the participants' experiences of genetic diagnoses and prenatal choices varied, findings revealed three major categories triggering new life trajectories for all of these parents: knowledge of reproductive risk and receiving a genetic diagnosis; adapting to diagnosis and new life path; and attitudes to prenatal diagnosis and disability. Parents reported that while dealing with their own attitudes and getting on with their new world, positive and negative attitudes of others impacted on these parents' experiences. A conceptual model arising from the major themes is offered as a way of thinking about this paradigm. Parents who continue a pregnancy where a genetic condition is detected or suspected prenatally, can be supported appropriately by health professionals while adjusting to their new life path. (C) 2011 Wiley Periodicals, Inc.
引用
收藏
页码:373 / 383
页数:11
相关论文
共 58 条
[51]   Prenatal diagnosis, pregnancy terminations and prevalence of Down Syndrome in Atlanta [J].
Siffel, C ;
Correa, A ;
Cragan, J ;
Alverson, CJ .
BIRTH DEFECTS RESEARCH PART A-CLINICAL AND MOLECULAR TERATOLOGY, 2004, 70 (09) :565-571
[52]   Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers [J].
Skotko, BG .
AMERICAN JOURNAL OF OBSTETRICS AND GYNECOLOGY, 2005, 192 (03) :670-677
[53]   Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory [J].
Starks, Helene ;
Trinidad, Susan Brown .
QUALITATIVE HEALTH RESEARCH, 2007, 17 (10) :1372-1380
[54]   Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss [J].
Stern, SJ ;
Arnos, KS ;
Murrelle, L ;
Welch, KO ;
Nance, WE ;
Pandya, A .
JOURNAL OF MEDICAL GENETICS, 2002, 39 (06) :449-453
[55]  
Walsh F, 2006, STRENGTHENING FAMILY, P4
[56]  
Weil J., 2000, PSYCHOSOCIAL GENETIC
[57]  
Wiener C., 2007, The SAGE handbook of grounded theory, P293
[58]   Prenatal and Postnatal Diagnosis of Infant Disability: Breaking the News to Mothers [J].
Wright, Joyce .
JOURNAL OF PERINATAL EDUCATION, 2008, 17 (03) :27-32