Table 4 Results of the matrix used for analysis
Patients & Carers | Patient | Carer |
|---|---|---|
1. Shrinking world Breathlessness shrinks the physical and relational world available to patients and carers and increases the time they spend together | • Restriction of daily activities • Restriction of independence • Good days and bad days | • Restriction of their own daily activities • Describe patients have good days and bad days • Hard to disconnect from the carer’s role |
2. Mutual adaptation Patient and carers work individually and together to create optimal functioning for both | • Keep as active as possible • Try to avoid over-exertion • Some push to the limit | • Take over some tasks • Slow down • Step in to prevent perceived over-exertion |
3. Co-management Patient and carers have active and complementary roles in managing breathlessness | • Have an active role in managing breathlessness • Work with the carer to overcome breathlessness | • Have an active role in managing breathlessness • Degree of participation depends on patients’ limitations • Step in situations of acute breathlessness |
4. Emotional coping Emotional coping with breathlessness is difficult for patients, but harder for carers | • Annoyance • Frustration | • Frustration • Resentment • Feeling trapped • Giving up part of their identity |
5. Meaning in the face of death Sense of meaning created by the relationship between patients and carers | • See death as natural (no fear) • Find meaning in their relationship with the carer | • Fear patients’ death and their future • Try to bring joy and happiness to the patient |