Family planning decisions for parents of children with a rare genetic condition: a scoping review

GEE, Melanie, PIERCY, Hilary and MACHACZEK, Katarzyna (2017). Family planning decisions for parents of children with a rare genetic condition: a scoping review. Sexual & Reproductive Healthcare, 1-6.

[img] PDF
Gee - Family planning for parents of children with a rare genetic condition (AM).pdf - Accepted Version
Restricted to Repository staff only until 4 August 2018.
Available under License Creative Commons Attribution Non-commercial No Derivatives.

Download (159kB) | Contact the author
Official URL: http://www.sciencedirect.com/science/article/pii/S...
Link to published version:: 10.1016/j.srhc.2017.08.001

Abstract

Expansion of newborn screening programmes increases the complexity around reproductive choices, both in terms of the increased number of parents faced with making reproductive decisions from the earliest days of their affected child's life, and the number of conditions for which such decisions have to be made. We conducted a scoping review to explore: (i) reproductive decision-making among parents of children with recessive genetic conditions; and, (ii) the involvement of healthcare services in facilitating and supporting those decisions. Systematic search processes involved seven bibliographic databases, citation, and grey literature searches. From an initial total of 311 identified articles, seven met the inclusion criteria and were included in the review. The extracted data were organised around three themes: factors influencing reproductive decisions taken by parents, how those factors changed over time, and the involvement of healthcare services in supporting and facilitating reproductive decisions. Most studies focused on attitudes towards, and uptake of, pre-natal diagnosis (PND) and termination. None of the studies considered the wider range of reproductive choices facing all parents, including those of children with conditions for whom PND and termination is not available or where good health outcomes make these options less justifiable. The literature provided little insight into the role of healthcare staff in providing family planning support for these parents. There is a need to better understand the support parents need in their decision-making, and who is best placed to provide that support.

Item Type: Article
Uncontrolled Keywords: scoping review; recessive genetic conditions; family planning; reproductive decisions; reproductive services
Research Institute, Centre or Group: Centre for Health and Social Care Research
Identification Number: 10.1016/j.srhc.2017.08.001
Depositing User: Melanie Gee
Date Deposited: 16 Aug 2017 14:44
Last Modified: 13 Sep 2017 19:13
URI: http://shura.shu.ac.uk/id/eprint/16533

Actions (login required)

View Item View Item

Downloads

Downloads per month over past year

View more statistics