Table 7.
Top 10 unmanaged needs by caregiver reported annual household income, the Muscular Dystrophy Surveillance, Research, and Tracking network, 2008–2012 (n = 272).
| <US$30,000 Household income | % managed | ⩾US$30,000 Household income | % managed |
|---|---|---|---|
| Arranging or getting access to marriage or relationship counseling | 22.9 | Information about transitioning to independent adult life | 30.6 |
| Finding funding for vehicle modifications | 27.6 | Information about jobs/future planning for individual with DBMD | 30.7 |
| Information about jobs/future planning for individual with DBMD | 29.6 | Caregiver counseling for emotional adjustment (depression, fear, loneliness) | 42.0 |
| Finding or attending parent, spouse or sibling support groups | 32.1 | Finding funding for vehicle modifications | 43.7 |
| Finding funding for home modifications | 33.9 | Information about financial resources (private, state, federal) | 45.6 |
| Information about transitioning to independent adult life | 34.0 | Information about how to prepare advance directives: living wills and designating durable power of attorney for healthcare | 49.6 |
| Caregiver counseling for emotional adjustment (depression, fear, loneliness) | 35.3 | Arranging or getting access to marriage or relationship counseling | 50.0 |
| Information about how to prepare advance directives: living wills and designating durable power of attorney for healthcare | 36.1 | Finding or attending parent, spouse or sibling support groups | 51.1 |
| Finding a builder/contractor for home modifications | 37.5 | Finding funding for home modifications | 51.7 |
| Affected individual counseling for emotional adjustment (depression, fear, loneliness) | 38.9 | Affected individual counseling for emotional adjustment (depression, fear, loneliness) | 54.3 |
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 household income. 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.