ArticleEuropean journal of human genetics : EJHG2011
Empowerment: qualitative underpinning of a new clinical genetics-specific patient-reported outcome.
Article in European journal of human genetics : EJHG, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers.
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Who cites it
35 citing papers in PubMed, 80 citations in OpenAlex.
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- Empowerment of parents of infants with congenital heart disease after rapid genome sequencing : April 11, 2025, revised June 20, 2025.Journal of community genetics · 2025Article
- Cross-cultural validation of the genetic counseling outcome scale in Korea.Journal of genetic counseling · 2025Article
- Translation, cross-cultural adaptation, and preliminary validation of a patient-reported outcome measure for genetic counseling outcomes in Sweden.Journal of genetic counseling · 2025Article
- Patient experiences and perceived value of genetic testing in inherited retinal diseases: a cross-sectional survey.Scientific reports · 2024Article
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- Parents' perspectives, experiences, and need for support when communicating with their children about the psychiatric manifestations of 22q11.2 deletion syndrome (22q11DS).Journal of community genetics · 2022Article
- Rapid Implementation of Telegenetic Counseling in the COVID-19 and Swedish Healthcare Context: A Feasibility Study.Frontiers in health services · 2022Article
- Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing.Molecular genetics & genomic medicine · 2021Article
- "Is that something that should concern me?": a qualitative exploration of parent understanding of their child's genomic test results.HGG advances · 2021Article
- Prospects and challenges for the genetic counsellor profession in the German-speaking countries: report of a workshop.Medizinische Genetik : Mitteilungsblatt des Berufsverbandes Medizinische Genetik e.V · 2021Article
- Adaptation and validation of the Genetic Counseling Outcome Scale for autism spectrum disorders and related conditions.Journal of genetic counseling · 2021Article
- Validation of the Spanish version of the questionnaire on Patient Empowerment in Long-Term Conditions.PloS one · 2020Article
- The psychosocial and service delivery impact of genomic testing for inherited retinal dystrophies.Journal of community genetics · 2019Article
- Parents' views of genetic testing and treatment of familial hypercholesterolemia in children: a qualitative study.Journal of community genetics · 2019Article
- Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study.Journal of genetic counseling · 2018Article
- Translation and Cross-Cultural Adaptation with Preliminary Validation of GCOS-24 for Use in Spain.Journal of genetic counseling · 2018Article
- Translation and Adaptation of the Genetic Counselling Outcome Scale (GCOS-24) for Use in Denmark.Journal of genetic counseling · 2017Article
Corrections and comments
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Authors and funding
3 authors at 1 institution in 1 country.
Funding
Abstract
Recent qualitative research developed a new construct labelled Empowerment describing a new patient outcome from using clinical genetics services that included four dimensions: Knowledge and Understanding, Decision-Making, Instrumentality and Future-Orientation. The aim of this study was to explore the validity, relevance and importance of the Empowerment construct for use as a patient-reported outcome (PRO) for clinical genetics services, and to refine the construct if necessary. Qualitative research (interviews and focus groups) was conducted in the UK with 12 patients, 15 representatives from patient support groups, 10 genetics clinicians and 4 service commissioners. Participants were asked to (1) describe what they think are the patient benefits from using clinical genetics services and (2) critique the Empowerment construct as a PRO. Interviews and focus groups were transcribed in full and analyzed using grounded theory. Findings confirmed the relevance and importance of the Empowerment construct, and identified Emotional Regulation as a further dimension of Empowerment. Data analysis also resulted in refinement of the construct, by renaming the other four dimensions to be Cognitive Control, Decisional Control, Behavioural Control and Hope. Empowerment has the potential to be a useful PRO to evaluate interventions in clinical genetics, and for use in clinical practice to generate data for continuous quality improvement. A study is underway to operationalise Empowerment by developing a psychometrically sound PRO measure that will take the form of a short questionnaire.
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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.