'I Just Try to Be Independent as Much as Possible': Duchenne Muscular Dystrophy, Agency and Contextualised Competence

Autor/in	Skyrme, Sarah
Titel	'I Just Try to Be Independent as Much as Possible': Duchenne Muscular Dystrophy, Agency and Contextualised Competence
Quelle	In: Global Studies of Childhood, 7 (2017) 3, S.278-289 (12 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	2043-6106
DOI	10.1177/2043610616671062
Schlagwörter	Muscular Strength; Males; Medical Research; Diseases; Physical Disabilities; Daily Living Skills; Decision Making; Foreign Countries; Children; Adolescents; Severe Disabilities; Attitudes toward Disabilities; Social Isolation; Physician Patient Relationship; Competence; United Kingdom (England) + Suchen Sie Ihr Suchwort? Muskelkraft; Male; Männliches Geschlecht; Disease; Krankheit; Physical handicap; Körperbehinderung; Alltagsfertigkeit; Decision-making; Entscheidungsfindung; Ausland; Child; Kind; Kinder; Adolescent; Adolescence; Adoleszenz; Jugend; Jugendalter; Jugendlicher; Severe disability; Schwerbehinderung; Soziale Isolation; Arzt-Patient-Beziehung; Kompetenz
Abstract	Duchenne muscular dystrophy is a progressive muscle-wasting condition that only affects boys, most use a wheelchair by the age of 12 and increasing levels of support and medical intervention are needed as they mature into young adulthood. Medical research is working to find treatments and an eventual cure for Duchenne muscular dystrophy, and this research can require the participation of those with the condition. Therefore, boys and young men who have Duchenne muscular dystrophy were invited to discuss their thoughts on how they might make a decision to take part in medical research, and to explore issues impacting their daily lives. Their accounts highlight experiences of agency and contextualised competence, challenging assumptions of vulnerability and immaturity in those who are young and severely disabled. The findings, based on fieldwork in England, enrich understandings of how such lives have meaning, wherein agency, independence and decision-making capabilities are present and exercised, albeit in ways that may be different to 'mainstream' notions of the terms. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01