Table 1 Participant profile and data collection of each study component
Participant profile | Data collection |
|---|---|
Study component - Cross-sectional survey and interviews with caregivers | |
221 caregivers of registered care recipients of primary palliative care projects from five panchayats in Kollam district, Kerala | Interview schedule with sociodemographic details, care recipient aspects, aspects of caregiving, caregiver burden (Achutha Menon Centre Caregiver Burden Inventory), quality of life (EuroQol EQ-5D-5L) |
CG1*: 42 years old, caring for her mother, a 72-year-old stroke survivor, for the past 5 years | About role as a caregiver, things done in a usual day, overall experience, what they feel about their role as caregiver, effect on life, difficulties they face |
CG2: 54 years old, caring for her 54-year-old husband, bedridden post-trauma 10 years ago | |
CG3: 40 years old, caring for 80-year-old father-in-law, who had advanced lung cancer, bedridden for the past 6 months | |
Study component– In depth interviews with palliative care nurses | |
PN1*: 41 years old, 10 years of experience | Routine usual work routines, care practices during home care, interactions with caregivers, handling caregiver issues, caregiver support activities if any |
PN2: 43 years old, 8 years of experience | |
PN3: 48 years old, 9 years of experience | |
PN4: 35 years old, 4 years of experience | |
PN5: 41 years old, 10 years of experience | |