ArticleSocial science & medicine (1982)2017
Experience as knowledge: Disability, distillation and (reprogenetic) decision-making.
Article in Social science & medicine (1982), 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis 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.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 43 citations in OpenAlex.
- Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs.Orphanet journal of rare diseases · 2022Pooled it
- Turning to Service Users for the Understanding of Current and Future Mental Health Services in the Development Process of Research and Practice: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Unpacking the notion of "serious" genetic conditions: towards implementation in reproductive decision-making?European journal of human genetics : EJHG · 2025Review
- Severity in the genomic age: the significance of lived experience to understandings of severity.European journal of human genetics : EJHG · 2025Article
- Genetics, emotion and care: Navigating future reproductive decisions in families of children with rare genetic conditions.Sociology of health & illness · 2025Article
- Renegotiation, uncertainty, imagination: Assemblage perspectives on reproductive and family planning with an Inborn Error of immunity.Social science & medicine (1982) · 2024Article
- Shaping and shifting schemas on supervised injectable opioid treatment: findings from a cross-sectional qualitative study in two German treatment facilities.Addiction science & clinical practice · 2024Article
- Defining patient's experiential knowledge: Who, what and how patients know. A narrative critical review.Sociology of health & illness · 2023Review
- Article
- The perception of parents with a child with sickle cell disease in Ghana towards prenatal diagnosis.Journal of community genetics · 2022Article
- Embodied risk for families with Li-Fraumeni syndrome: Like electricity through my body.Social science & medicine (1982) · 2022Article
- Negotiating mental illness across the lay-professional divide: Role play in peer work consultations.Sociology of health & illness · 2022Article
- "You Probably Won't Notice Any Symptoms": Blood Pressure in Pregnancy-Discourses of Contested Expertise in an Era of Self-Care and Responsibilization.Qualitative health research · 2021Article
- Letter to the editor. Gene editing and disabled people: a response to Iñigo de Miguel Beriain.Journal of community genetics · 2020Article
- "I didn't take it too seriously because I'd just never heard of it": Experiential knowledge and genetic screening for thalassaemia in the UK.Journal of genetic counseling · 2019Article
- Experience-Based Values: A Framework for Classifying Different Types of Experience in Health Valuation Research.The patient · 2018Review
- Article
- The Experiential Learning Pathway of Cancer Survivors as They Recover Their Lives Post-Treatment: A Qualitative Study.Global qualitative nursing researchArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
Abstract
'Experiential knowledge' is increasingly recognised as an important influence on reproductive decision-making. 'Experiential knowledge of disability' in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of 'experiential knowledge' has been widely critiqued for its idiosyncrasy, its impermanence and consequently its perceived inferiority to (medical) knowledge. This paper explores some of these key critiques of experiential knowledge through an analysis of its constitution and uses in the context of reproductive decision-making. Seventeen UK-resident women with Spinal Muscular Atrophy (SMA), or with SMA in their family, took part in two in-depth interviews: one in 2007-9 and the other in 2013-4. By comparing and contrasting these women's accounts at two time points, this paper demonstrates the stark contrast between 'lived experience' of SMA (the visceral everyday realities of life with the condition) and the various way(s) this experience was transformed into, and presented as, 'knowledge' through the processes of making, and accounting, for reproductive decisions. The analysis highlights that multiple, distinct and sometimes competing experiential frameworks are used to conceptualise SMA across time and context. However, rather than evidence of its fallibility, this finding highlights that 'knowledge' is an inappropriate vessel with which to capture and transfer 'experiential knowledge'. Rather, we need to consider how to value such insight in ways that harnesses its inherent strength without leaving it vulnerable to the epistemological critiques attracted by labelling it 'knowledge'.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.