Citations (14)
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Sarah Skyrme. (2017) In and On their Own Terms: Children and Young People's Accounts of Life with Duchenne Muscular Dystrophy. Child Care in Practice 23:1, pages 77-89.
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Haruo Fujino, Yuko Iwata, Toshio Saito, Tsuyoshi Matsumura, Harutoshi Fujimura & Osamu Imura. (2016) The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions. International Journal of Qualitative Studies on Health and Well-being 11:1.
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Articles from other publishers (12)
Philip A. Powell & Jill Carlton. (2022) A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy. Quality of Life Research 32:1, pages 225-236.
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Adeline Perrot & Guy Letellier. (2022) Quand les jeunes patients vivant avec la maladie de Duchenne négocient les actes de soin avec les adultes : personnalisation et pratiques de résistanceWhen young patients living with Duchenne muscular dystrophy negotiate care with adults: personalization and resistance practices. Anthropologie et Santé:25.
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Patricia Thille, Thomas Abrams & Barbara E Gibson. (2020) Enacting objects and subjects in a children’s rehabilitation clinic: Default and shifting ontological politics of muscular dystrophy care. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 26:4, pages 495-511.
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Ximena Palacios-Espinosa, Heidi Mateus, Martha Dávalos, Jennifer Gracia & Hamer Bastidas-Bilbao. (2021) The experience of Colombian boys and young men living with Duchenne muscular dystrophy. Psicologia USP 32.
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Thomas Abrams, David Abbott & Bhavnita Mistry. (2020) Ableist Constructions of Time? Boys and Men with Duchenne Muscular Dystrophy Managing the Uncertainty of a Shorter Life. Scandinavian Journal of Disability Research 22:1, pages 48-57.
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Danique M J Hellebrekers, Judith M Lionarons, Catharina G Faber, Sylvia Klinkenberg, Johan S H Vles & Jos G M Hendriksen. (2019) Instruments for the Assessment of Behavioral and Psychosocial Functioning in Duchenne and Becker Muscular Dystrophy; a Systematic Review of the Literature. Journal of Pediatric Psychology 44:10, pages 1205-1223.
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Andy Hiscock & Stephen Barclay. (2019) ‘It’s a hard conversation to have’. Healthcare professionals’ views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study. BMJ Supportive & Palliative Care 9:1, pages e9-e9.
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Judith Chew, John Carpenter & Anne M. Haase. (2019) Living with epilepsy in adolescence-A qualitative study of young people's experiences in Singapore: Peer socialization, autonomy, and self-esteem. Child: Care, Health and Development 45:2, pages 241-250.
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Patricia Thille, Barbara E. Gibson, Thomas Abrams, Laura C. McAdam, Bhavnita Mistry & Jenny Setchell. (2018) Enhancing the human dimensions of children’s neuromuscular care: piloting a methodology for fostering team reflexivity. Advances in Health Sciences Education 23:5, pages 867-889.
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Sarah Skyrme. (2016) ‘I just try to be independent as much as possible’: Duchenne muscular dystrophy, agency and contextualised competence. Global Studies of Childhood 7:3, pages 278-289.
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Anna Carin Aho, Sally Hultsjö & Katarina Hjelm. (2017) Experiences of being parents of young adults living with recessive limb-girdle muscular dystrophy from a salutogenic perspective. Neuromuscular Disorders 27:6, pages 585-595.
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David Abbott, Marcus Jepson & Jon Hastie. (2016) Men living with long-term conditions: exploring gender and improving social care. Health & Social Care in the Community 24:4, pages 420-427.
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