Table 8.
Top 10 unmanaged needs by caregiver race/ethnicity, the Muscular Dystrophy Surveillance, Research, and Tracking network, 2008–2012 (n = 272).
| Minority caregivers | % managed | Non-minority caregivers | % managed |
|---|---|---|---|
| Finding funding for vehicle modifications | 20.9 | Information about jobs/future planning for the individual with DBMD | 28.5 |
| Information about transitioning to independent adult life | 32.5 | Information about transitioning to independent adult life | 32.0 |
| Information about jobs/future planning for individual with DBMD | 33.3 | Caregiver counseling for emotional adjustment (depression, fear, loneliness) | 40.7 |
| Finding a builder/contractor for home modifications | 36.8 | Arranging or getting access to marriage or relationship counseling | 41.7 |
| Arranging or getting access to marriage or relationship counseling | 37.0 | Finding funding for vehicle modifications | 42.4 |
| Finding funding for home modifications | 37.8 | Finding funding for home modifications | 46.3 |
| Caregiver counseling for emotional adjustment (depression, fear, loneliness) | 38.9 | Information about how to prepare advance directives: living wills and designating durable power of attorney for healthcare | 46.6 |
| Information about how to prepare advance directives: living wills and designating durable power of attorney for healthcare | 39.5 | Finding or attending parent, spouse or sibling support groups | 47.1 |
| Affected individual counseling for emotional adjustment (depression, fear, loneliness) | 42.5 | Information about financial resources (private, state, federal) | 47.3 |
| Patient discussion/support groups | 43.2 | Affected individual counseling for emotional adjustment (depression, fear, loneliness) | 51.6 |
DBMD: Duchenne/Becker muscular dystrophy.
Management of needs was recoded as not managed = 0 or managed = 1; thus, the percentage reported in the table represents the percentage of caregivers that identified a need as managed. Gray cells identify unique unmanaged needs across caregiver race/ethnicity. Unmanaged needs were selected based on percentage of caregivers reporting management of the need, for example, only 22.9% of caregivers from lower income households report getting access to marriage counseling as managed.