Living with Duchenne Muscular Dystrophy
Relational Autonomy and Decision‐Making
Bibliographic Data
| ID | 14896099 |
|---|---|
| Authors | L Skyrme (0000-0002-6173-0117, Newcastle University, corresponding author), Sarah Skyrme (PEALS Research Centre Newcastle University Newcastle Upon Tyne Tyne and Wear UK) |
| Year | 2016 |
| Volume | 30 |
| Issue | 3 |
| Pages | 220-229 |
| Publication date | 2016-05-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children & Society (JOURNAL) |
| Journal identifiers | ISSN: 0951-0605 • E-ISSN: 1099-0860 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/chso.12134 |
| OpenAlex | W1816589758 |
| Language | EN |
| Citations received | 3 |
| References cited | 28 |
Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co‐operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence
Agency (philosophy · Autonomy · Developmental psychology · Duchenne muscular dystrophy · Independence (probability theory · Muscular dystrophy · Personal autonomy · Political science · Sociology · Autism Spectrum Disorder Research · Disability Rights and Representation · Family and Disability Support Research · Medicine · Psychology
Relational autonomy or undue pressure? Family’s role in medical decision‐making
Constructing and Reconstructing Childhood
The Challenge and Challenging of Childhood Studies? Learning from Disability Studies and Research with Disabled Children
Children as Research Subjects
Other Voices, Other Rooms
Supporting the Participation of Disabled Children and Young People in Decision‐making
Children’s experiences of disability
Disabled children's rights in every day life
Informed consent, gatekeepers and go‐betweens
Sustaining Self
Talk to Me-I'm Human
Competent children? Minors' consent to health care treatment and research
Children and the Feminist Ethic of Care
Futureless persons
| Citations per year | 0.38 |
|---|---|
| Citation span | 2018 - 2022 (5) |
| Highly cited | No |