'The Cure for Us Is a Lot of Things': How Young People with Prader-Willi Syndrome View Themselves and Future Clinical Trials

Autor/inn/en	Dykens, Elisabeth M.; Roof, Elizabeth; Hunt-Hawkins, Hailee
Titel	'The Cure for Us Is a Lot of Things': How Young People with Prader-Willi Syndrome View Themselves and Future Clinical Trials
Quelle	In: Journal of Applied Research in Intellectual Disabilities, 35 (2022) 2, S.460-470 (11 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Dykens, Elisabeth M.)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-2322
DOI	10.1111/jar.12950
Schlagwörter	Genetic Disorders; Self Concept; Symptoms (Individual Disorders); Hunger; Anxiety; Psychological Patterns; Proximity; Research Needs; Advocacy; Scheduling; Intervention + Suchen Sie Ihr Suchwort? Selbstkonzept; Psychiatrische Symptomatik; Angst; Lebensnähe; Forschungsbedarf; Sozialanwaltschaft; Disposition
Abstract	Background: Despite work on the self-identities of people with intellectual disabilities, research has yet to describe the self-perceptions of people with Prader-Willi syndrome (PWS). The perspectives of those with PWS are also important for rapidly evolving clinical trials aimed at treating symptoms of PWS. Method: Twenty-one young people with PWS were administered a semi-structured interview that assessed how they perceive their syndrome and clinical trials. Transcribed interviews were reliably coded using content-driven, applied thematic analyses. Results: Five themes emerged: struggles with chronic hunger and food-seeking that impede goals and relationships; struggles with anxiety and outbursts, schedule changes and school; distancing from PWS; needs for clinical trials that cure PWS, reduce hunger or anxiety, and lead to improved outcomes; and needs for advocacy and awareness of PWS. Conclusions: Findings shed new light on the self-perceptions of those with PWS and have important implications for current interventions and future clinical trials. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2022/4/11