Related Experiment Videos
Employment profiles in neuromuscular diseases
W M Fowler1, R T Abresch, T R Koch
1PM&R, University of California, Davis 95616, USA.
American Journal of Physical Medicine & Rehabilitation
|January 1, 1997
Summary
Employment barriers for individuals with neuromuscular diseases (NMD) are often non-physical, including education and psychological adjustment. Rehabilitation provider factors also limit job opportunities for those with NMD.
Area of Science:
- Rehabilitation Medicine
- Neurology
- Sociology
Background:
- Investigated employment barriers for 154 individuals with six progressive neuromuscular diseases (NMD).
- NMDs included spinal muscular atrophy (SMA), hereditary motor sensory neuropathy (HMSN), Becker's muscular dystrophy (BMD), facioscapulohumeral muscular dystrophy (FSHD), myotonic muscular dystrophy (MMD), and limb-girdle syndrome (LGS).
Purpose of the Study:
- To identify consumer and rehabilitation provider factors limiting employment for individuals with NMD.
- To explore the relationship between NMD type, employment status, and various influencing factors.
Main Methods:
- Survey and analysis of employment data for 154 individuals with NMD.
- Comparison of employment levels, educational attainment, and occupational types across different NMD groups.
Main Results:
- Forty percent of individuals were employed, 50% had past employment, and 10% were never employed.
- Major consumer barriers included education, occupation type, intellectual capacity, and psychosocial adjustment; physical disability was not a primary barrier.
- Myotonic muscular dystrophy (MMD) and limb-girdle syndrome (LGS) groups showed higher unemployment, lower education, and fewer professional roles compared to other NMDs.
- Provider barriers included low physician referrals to rehabilitation and low acceptance rates due to insufficient counselor experience with NMD.
Conclusions:
- Employment limitations for individuals with NMD are significantly influenced by non-physical consumer factors and inadequate rehabilitation provider support.
- Addressing educational deficits, psychological adjustment, and improving rehabilitation referral and counselor expertise are crucial for enhancing employment opportunities in NMD populations.