Entering Adulthood with Duchenne Muscular Dystrophy: A Pathfinders Report

Project report


Glover, S., Hale, J., Roberts, M., Bosanquet, J., Dack, R., Hoskin, J., Peat, G. and Abbott, D. 2023. Entering Adulthood with Duchenne Muscular Dystrophy: A Pathfinders Report. Pathfinders: Neuromuscular Alliance.
AuthorsGlover, S., Hale, J., Roberts, M., Bosanquet, J., Dack, R., Hoskin, J., Peat, G. and Abbott, D.
TypeProject report
Year2023
PublisherPathfinders: Neuromuscular Alliance
Page range1-32
Web address (URL)https://www.pathfindersalliance.org.uk/research/entering-adulthood-with-duchenne-muscular-dystrophy-a-pathfinders-report/
FunderPTC Therapeutics
File
License
File Access Level
Anyone
File
License
File Access Level
Anyone
Publication dates
OnlineNov 2023
Publication process dates
Deposited12 Jan 2024
Copyright holder© 2023, Pathfinders: Neuromuscular Alliance
Additional information

Contributor Details:

Afterword by Professor Ros Quinlivan: MRC Centre for Neuromuscular Diseases

Katy Etherington: Freelance Design

Quinn Clark: Editor

Permalink -

https://repository.uel.ac.uk/item/8x1z3

Download files


File
Pathfinders-DMD-Report-Digital.pdf
License: All rights reserved
File access level: Anyone

Easy Read Version.pdf
License: All rights reserved
File access level: Anyone

  • 69
    total views
  • 97
    total downloads
  • 3
    views this month
  • 6
    downloads this month

Export as

Related outputs

“I Forgot My Numbers and the Machine Swallowed It Up”: Adults With Learning Disabilities Share Their Perspectives on the Shift to a Cashless Society
Watts, P., Hoskin, J., Upadhyay, R., Tapley, E. and Kwiatkowska, G. 2024. “I Forgot My Numbers and the Machine Swallowed It Up”: Adults With Learning Disabilities Share Their Perspectives on the Shift to a Cashless Society. British Journal of Learning Disabilities. p. In Press. https://doi.org/10.1111/bld.12621
Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study
Hoskin, J., Cheetha, T. D., Mitchell, R. T., Wong, S. C. and Wood, C. L. 2024. Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study. Muscle & Nerve. 70 (3), pp. 402-408. https://doi.org/10.1002/mus.28201
Workshop report: Workshop on psychiatric prescribing and psychology testing and intervention in children and adults with Duchenne muscular dystrophy
Bouquillon, L., Bindman, D., Hendriksen, J., Collin, P., Hoskin, J., Conn, R., Geagan, C. and Quinlivan, R. 2024. Workshop report: Workshop on psychiatric prescribing and psychology testing and intervention in children and adults with Duchenne muscular dystrophy. Research Ideas and Outcomes. 10 (Art. e119243). https://doi.org/10.3897/rio.10.e119243
Report on the Psycho-Social Needs and Support in Duchenne Muscular Dystrophy: The ‘Cinderella’ of DMD Care
Hoskin, J. 2022. Report on the Psycho-Social Needs and Support in Duchenne Muscular Dystrophy: The ‘Cinderella’ of DMD Care. Duchenne UK.
Education, Health and Care Plans
Arnold, L. and Hoskin, J. 2021. Education, Health and Care Plans. in: Beaton, M. C., Codina, G. N. and Wharton, J. C. (ed.) Leading on Inclusion: The Role of the SENCO Taylor & Francis (Routledge).
Accessible Housing Campaign Report
Rey-Hastie, J. and Hoskin, J. 2021. Accessible Housing Campaign Report. Pathfinders: Neuromuscular Alliance.
Troubling norms? Adults and teenagers with a life-limiting impairment in Denmark and England talk about their lives, support and future plans
Hoskin, J. 2021. Troubling norms? Adults and teenagers with a life-limiting impairment in Denmark and England talk about their lives, support and future plans. European Journal of Special Needs Education. 36 (3), pp. 329-343. https://doi.org/10.1080/08856257.2020.1754545
Aspiration, austerity and ableism: to what extent are the 2014 SEND reforms supporting young people with a life‐limiting impairment and their families to get the lives they want?
Hoskin, J. 2019. Aspiration, austerity and ableism: to what extent are the 2014 SEND reforms supporting young people with a life‐limiting impairment and their families to get the lives they want? British Journal of Special Education. 46 (3), pp. 265-291. https://doi.org/10.1111/1467-8578.12271
Psychosocial Management of the Patient With Duchenne Muscular Dystrophy
Colvin, M. K., Poysky, J., Kinnett, K., Damiani, M., Gibbons, M., Hoskin, J., Moreland, S., Trout, C. J. and Weidner, N. 2018. Psychosocial Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics. 142 (Supplement 2), pp. S99-S109. https://doi.org/10.1542/peds.2018-0333L
Improving the reading skills of young people with Duchenne muscular dystrophy in preparation for adulthood
Hoskin, J. and Fawcett, Angela 2014. Improving the reading skills of young people with Duchenne muscular dystrophy in preparation for adulthood. British Journal of Special Education. 41 (2), pp. 172-190. https://doi.org/10.1111/1467-8578.12062
Book Reviews
Hoskin, J. and Robertson, G. 2017. Book Reviews. Research in Teacher Education. 7 (1), pp. 33-34. https://doi.org/10.15123/uel.891xx
Research in Teacher Education: Volume 7, No.1, May 2017
Garby-Czerniawski, G., Hudson, A., Smith, M., Bell, C., Baker, A., Archer, L., Hoskin, J. and Robertson, G. 2017. Research in Teacher Education: Volume 7, No.1, May 2017. The School of Education and Communities, University of East London. https://doi.org/10.15123/uel.891x1
Taking charge and letting go: exploring the ways a Transition to Adulthood project for teenagers with Duchenne muscular dystrophy has supported parents to prepare for the future
Hoskin, J. 2017. Taking charge and letting go: exploring the ways a Transition to Adulthood project for teenagers with Duchenne muscular dystrophy has supported parents to prepare for the future. British Journal of Special Education. 44 (2), pp. 165-185. https://doi.org/10.1111/1467-8578.12173