Parents' perceptions of the influence of genetic counselling on reproductive decision-making following the birth of a child with neural tube defect

Crowley, Marian R.(Marian Regina) (1990) Parents' perceptions of the influence of genetic counselling on reproductive decision-making following the birth of a child with neural tube defect. Masters thesis, Memorial University of Newfoundland.

[English] PDF (Migrated (PDF/A Conversion) from original format: (application/pdf)) - Accepted Version Available under License - The author retains copyright ownership and moral rights in this thesis. Neither the thesis nor substantial extracts from it may be printed or otherwise reproduced without the author's permission. Download (4MB) [English] PDF - Accepted Version Available under License - The author retains copyright ownership and moral rights in this thesis. Neither the thesis nor substantial extracts from it may be printed or otherwise reproduced without the author's permission. (Original Version)

Abstract

Neural tube defect (NTD) is a common genetic (multifactorial) disorder in Newfoundland and Labrador. This descriptive study explored parents perceptions' of genetic counselling for this condition. The purpose of this study was to assess how parents of children with a neural tube defect perceive genetic counselling, as well as other related factors, and how these influences impact on their reproductive decisions. -- Parents of children born in Newfoundland between May, 1984 and June, 1987 who also received genetic counselling regarding this condition were contacted by mail with a questionnaire designed by the researcher. The sample consisted of 55 subjects (31 mothers and 24 fathers) from 31 families. -- Data were collected exploring the parents' recall of the recurrence risk of NTD; their interpretations of this risk; the impact of genetic counselling on subsequent procreative decisions; perceptions of prenatal diagnosis; the influence of decision-making factors other than recurrence risk; and, the actual reproductive behavior ensuing genetic counselling. -- Although parents reported minimal influence of genetic counselling on reproductive decision-making, they appeared to be using the information obtained during genetic counselling to facilitate their decisions. They also appeared to be using a myriad of other family oriented factors in making reproductive decisions including the wishes of their partners, fulfillment as parents and taking care of their other children. Other influences such as religion, relatives' influence, and career goals appeared to have less important roles. -- This study concluded that parents not only used the information obtained from genetic counselling in making reproductive decisions, but many other factors interacted to arrive at the reproductive outcome. -- Interpretation of the findings and implications of the research for nursing practice are presented. Suggestions for future pertinent research are discussed.

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