Table 3 The four themes resulting from the analysis
From: Living with myotonic dystrophy; what can be learned from couples? a qualitative study
Impact for persons with MD1 |
1) Decreasing abilities |
   • Many barriers; "no power, no pep, no guts" |
   • Avoiding barriers; "I don't do that much" |
Impact for partners |
2) Increasing burden |
   • "If I did not do it, nothing happened" |
   • "I am in charge; I give directions" |
Impact for both as a (married) couple |
3) Finding a mode together |
   • Doing or leaving; renegotiation of tasks |
   • Individual and shared activities; give each other freedom |
Impact for persons with MD1, for partners and for couples 4) Lack of understanding |
   • Even the family does not understand |
   • We manage ourselves |
   • Health care: many islands focused on part of the disease |