Table 4 The main characteristics of the four profiles
Component | Profile 1 Appreciation and contact person | Profile 2+ Supportive relationships | Profile 2- Omission of supportive relationships | Profile 3 Guidance, information and practical/medical support | Profile 4 More time off |
|---|---|---|---|---|---|
Support needs to enable caregiver to provide care (co-worker) | Assigned contact person to coordinate care | Sharing care and shared decision-making | Sharing care and shared decision-making | Information and guidance (care coordination and illness trajectory) and practical/medical support (managing symptoms and medication) | Minimal; refrains from asking for help |
Support needs for caregivers themselves (co-client) | Advice and listening ear | Take over care at night | Support with own feelings and worries, and take over care at night | No support needs expressed | More time off |
Experienced support | Feels undervalued and wants more appreciation | Positive. Receives sufficient support from multiple sources | Negative. Feels neglected by healthcare professionals | Critical: wishes are not fulfilled by healthcare professionals | Critical: involvement of more professionals is at the expense of own privacy and quality of care |
Experiences with caregiving | Providing care feels good | Care enhances relationship with relative | Feels overwhelmed and alone | Providing care is satisfying but not always easy | Care is demanding, and struggling with changing relationship with relative |
Caregiver capacity | Can cope well with care, but needs empowerment | Can cope well with care and manages care pretty well | Struggling with care on their own | Can cope with care, but needs support to continue caregiving | Can hardly cope with care and experiences a heavy burden |