Table 5 Barriers to Receiving Information

Barriers to CG Seeking Information [n = 59]*

n (%)

 CG did not initially acknowledge symptoms as a disease (esp. behavioral)

24 (40.7 %)

 CG did not know the diagnosis or what terms to search for

11 (18.6 %)

 CG did not know there would be information available (esp. behavioral)

10 (16.9 %)

 CG too busy or overwhelmed to seek information

6 (10.2 %)

 CG in denial or avoiding stigma of disease

4 (6.8 %)

 CG didn’t think of self as “caregiver”

3 (5.1 %)

 CG already familiar professionally

1 (1.7 %)

Barriers to Information Sources, [n = 38]

n (%)

 Insufficient information provided by PCP

17 (44.7 %)

  PCP too busy to provide information

5 (13.2 %)

 Internet search frustrating

16 (42.1 %)