Publication
DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood
Annexstad E, Ramberg C, Rosenberger A, Nordstrom M · Neuromuscular Disorders · 2024
Duchenne muscular dystrophy (DMD) is a severe genetic neuromuscular disease that causes progressive loss of muscle function. As life expectancy in DMD has gradually increased to a current median of 21-39 years, the disease serves as an example of childhood-onset, life-limiting conditions where attention to paediatric palliative care (PPC) in transition to adulthood is required. DMD-YOUNG is aimed at adolescents with DMD, to explore how PPC principles can be applied in the transition into adulthood and assist the participants in developing independence, empowerment, and the best possible quality of life. In project phase one, six young men with DMD, aged 14-28 years, were invited to participate in online discussions about their challenges, coping strategies, and needs for knowledge and social networking. In phase two, all boys aged 14-23 years with DMD in Norway were invited to a weekend gathering at Frambu Centre, with a programme of lectures and group sessions, covering medical information, social life, housing, higher education and employment, as well as social activities, in accordance with the results from phase one. The gathering also laid the foundation for project phase three, which is the establishment of a digital platform for discussions and social networking among adolescents with DMD. The 13 young men who attended the weekend gathering experienced group discussions and social activities as educational, inspirational, and motivational. They reported a sense of community and appreciated that the setting was tailored to them as adolescents rather than patients. The DMD-YOUNG project illustrates a successful approach to PPC for adolescents with a rare, life-limiting neuromuscular disorder. The project group acquired important insight into the participants' concerns and needs, coping strategies, experiences and hopes for the future. This will be invaluable in the establishment of a digital platform for, as well as improved management of, DMD in transition. Copyright © 2024
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.