Literature DB >> 29392580

Reproductive decision making: interviews with mothers of children with undiagnosed developmental delay.

Emily Pond1,2, Rebecca Dimond3.   

Abstract

Reproductive decision making is complex and personal. Having a child with undiagnosed developmental delay can further complicate these decisions, as recurrence risks are unknown. This qualitative study is an exploration of the experiences of parents who have a child with an undiagnosed developmental disorder, focusing on their reproductive decisions. The aims of the research were to explore the reproductive decision making process and examine the factors that influence these decisions. Data were collected from in-depth semi-structured interviews with five mothers of children without a diagnosis. Transcripts were analysed using an interpretative phenomenological analysis. Analysis identified five factors that were considered by participants when contemplating reproductive decisions: future uncertainty, perceptions of risk, the potential impact a child would have on their current children, expectations of a family and the desire for another child. Being aware of the factors that influence reproductive decisions for these mothers and being sensitive to them can enable genetic counsellors to carry out their role more effectively, as they are aware of the factors that need to be discussed and explored before a decision is made.

Entities:  

Keywords:  Developmental delay; Diagnosis; Genetic counselling; Reproductive decisions; Undiagnosed

Year:  2018        PMID: 29392580      PMCID: PMC6002303          DOI: 10.1007/s12687-017-0354-0

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  18 in total

1.  Living with Marfan syndrome III. Quality of life and reproductive planning.

Authors:  K F Peters; F Kong; M Hanslo; B B Biesecker
Journal:  Clin Genet       Date:  2002-08       Impact factor: 4.438

2.  Experiential knowledge of disability, impairment and illness: The reproductive decisions of families genetically at risk.

Authors:  Felicity Boardman
Journal:  Health (London)       Date:  2013-11-06

3.  Analysis of problems in making the reproductive decision after genetic counselling.

Authors:  P G Frets; H J Duivenvoorden; F Verhage; B M Peters-Romeyn; M F Niermeijer
Journal:  J Med Genet       Date:  1991-03       Impact factor: 6.318

4.  The complexity of reproductive decision-making in asymptomatic carriers of the Huntington mutation.

Authors:  Marleen Decruyenaere; Gerry Evers-Kiebooms; Andrea Boogaerts; Kristien Philippe; Koen Demyttenaere; René Dom; Wim Vandenberghe; Jean-Pierre Fryns
Journal:  Eur J Hum Genet       Date:  2007-01-24       Impact factor: 4.246

5.  Psychological benefit of diagnostic certainty for mothers of children with disabilities: lessons from Down syndrome.

Authors:  W Lenhard; E Breitenbach; H Ebert; H J Schindelhauer-Deutscher; W Henn
Journal:  Am J Med Genet A       Date:  2005-03-01       Impact factor: 2.802

6.  Why do we need a diagnosis? A qualitative study of parents' experiences, coping and needs, when the newborn child is severely disabled.

Authors:  A H Graungaard; L Skov
Journal:  Child Care Health Dev       Date:  2007-05       Impact factor: 2.508

7.  Development of an evidence-based information booklet to support parents of children without a diagnosis.

Authors:  Celine Lewis; Heather Skirton; Ray Jones
Journal:  J Genet Couns       Date:  2012-04-21       Impact factor: 2.537

8.  Genetic counseling -- the postcounseling period: II. Making reproductive choices.

Authors:  A Lippman-Hand; F C Fraser
Journal:  Am J Med Genet       Date:  1979

9.  Parental perceived value of a diagnosis for intellectual disability (ID): a qualitative comparison of families with and without a diagnosis for their child's ID.

Authors:  Nancy L Makela; Patricia H Birch; Jan M Friedman; Carlo A Marra
Journal:  Am J Med Genet A       Date:  2009-11       Impact factor: 2.802

10.  Improved diagnostic yield compared with targeted gene sequencing panels suggests a role for whole-genome sequencing as a first-tier genetic test.

Authors:  Anath C Lionel; Gregory Costain; Nasim Monfared; Susan Walker; Miriam S Reuter; S Mohsen Hosseini; Bhooma Thiruvahindrapuram; Daniele Merico; Rebekah Jobling; Thomas Nalpathamkalam; Giovanna Pellecchia; Wilson W L Sung; Zhuozhi Wang; Peter Bikangaga; Cyrus Boelman; Melissa T Carter; Dawn Cordeiro; Cheryl Cytrynbaum; Sharon D Dell; Priya Dhir; James J Dowling; Elise Heon; Stacy Hewson; Linda Hiraki; Michal Inbar-Feigenberg; Regan Klatt; Jonathan Kronick; Ronald M Laxer; Christoph Licht; Heather MacDonald; Saadet Mercimek-Andrews; Roberto Mendoza-Londono; Tino Piscione; Rayfel Schneider; Andreas Schulze; Earl Silverman; Komudi Siriwardena; O Carter Snead; Neal Sondheimer; Joanne Sutherland; Ajoy Vincent; Jonathan D Wasserman; Rosanna Weksberg; Cheryl Shuman; Chris Carew; Michael J Szego; Robin Z Hayeems; Raveen Basran; Dimitri J Stavropoulos; Peter N Ray; Sarah Bowdin; M Stephen Meyn; Ronald D Cohn; Stephen W Scherer; Christian R Marshall
Journal:  Genet Med       Date:  2017-08-03       Impact factor: 8.822

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