ArticleHealth expectations : an international journal of public participation in health care and health policy2012
Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality.
Article in Health expectations : an international journal of public participation in health care and health policy, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
10 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Ethical dilemmas in continuing pregnancy after a prenatal diagnosis of congenital heart defects: a systematic review and narrative synthesis.BMC medical ethics · 2025Pooled it
- Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature.BMC medical ethics · 2019Pooled it
- Pregnancy experiences of expectant parents with Neurofibromatosis type 1: a qualitative interview study.European journal of human genetics : EJHG · 2026Article
- Maternal decision-making for patients offered prenatal myelomeningocele repair.Pregnancy (Hoboken, N.J.) · 2026Article
- Neonatal End-of-Life Decision Making: The Possible Behavior of Greek Physicians, Midwives, and Nurses in Clinical Scenarios.International journal of environmental research and public health · 2021Article
- Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study.Journal of genetic counseling · 2018Article
- Experience as knowledge: Disability, distillation and (reprogenetic) decision-making.Social science & medicine (1982) · 2017Article
- It's complicated - Factors predicting decisional conflict in prenatal diagnostic testing.Health expectations : an international journal of public participation in health care and health policy · 2016Article
- Presenting life with cystic fibrosis: a Q-methodological approach to developing balanced, experience-based prenatal screening information.Health expectations : an international journal of public participation in health care and health policy · 2015Article
- The implications of patients and carers as active agents in health care and the consequences for their own health, the health of their families and health system.Health expectations : an international journal of public participation in health care and health policy · 2012Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
backgroundKnowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality.
objectiveTo explore the role that expectant parents' experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality.
designSecondary analysis of qualitative narrative interview data informed by contextual systems framework.
settingParticipants were recruited throughout the United Kingdom and interviewed between 2004 and 2006.
participantsTwenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality.
findingsMost respondents recounted using their experiential knowledge of disability, whether of their unborn baby's condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby's specific disability, sought out others' experiences of the condition following antenatal diagnosis.The nature of a parent's experiential knowledge did not predict whether they continued with or terminated their pregnancy. DISCUSSION: Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby's condition with health professionals who are aware of the influence this might have on parents' decisions.
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Registered trials
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