G.P.17.10 The educational and vocational status of muscular dystrophy patients

Meaningful occupations of young adults with muscular dystrophy and other neuromuscular disorders

“…Past research shows that youth's motivation and readiness also affect their transition to adulthood and adult services (Lindsay et al, 2018). Nevertheless, youth with muscular dystrophy should have equal opportunities to pursue their occupational interests (Im et al, 2009).…”

“…Young adults with child-onset disabilities, such as Duchenne muscular dystrophy (DMD), often experience compounded disadvantages as they transition to adulthood, especially in pursuing meaningful occupations, such as school, volunteering, employment, and social and recreational activities (Cohen et al, 2003;. Among young adults with DMD, physical limitations negatively influenced their ability to maintain education and vocation (Im et al, 2009). Recent research shows that youth with DMD often report needing more support with engaging in meaningful occupations (Lindsay, McAdam, et al, 2017).…”

“…As a result, unemployment, social isolation, and depression are widespread among this population (Fowler et al, 1997; Lindsay, McAdam, & Mahendiran, 2017). For example, the estimated unemployment rate of adult neuromuscular and muscular dystrophy patients is between 60% and 77% (Fowler et al, 1997; Im, Moon, Park, & Lee, 2009). Meanwhile, Bauman, Newman, and Diserens (2013) explored youth ages 16 to 25 years with neurodevelopmental disabilities and found that only 3.4% were employed and 29% reported having work problems.…”

Adult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular Dystrophy

“…Not surprisingly, unemployment and social isolation are frequent complaints [ 98, 99 ]. Qualitative studies examining barriers to meaningful occupation in adult DMD patients indicate lack of support and resources, social isolation, lack of motivation and depression in addition to medical challenges [ 100 ]. Fatigue, pain and affective disorders may be more prevalent in the older DMD population [ 101 ] and these likely further impact upon participation in adulthood.…”

“…To date, this has been studied mainly in the paediatric DMD population using for example the Children’s Assessment of Participation and Enjoyment (CAPE) and Paediatrics Quality of Life Inventory (PedsQL) scales [ 103 ] and the ACTIVLIM questionnaire [ 104 ]. Studies in the adult Duchenne population have used narrative interviews [ 100, 103 ], SF-36 and WHOQOL-BREF [ 105–107 ]. Scales used in the adult population focus predominantly on quality of life evaluation rather than actual detailed performance participation.…”