3 Palliative care at home in patients with oncological diseases: trends in characteristics and circumstances of the primary family caregiver

Introduction This study aims to describe the characteristics and circumstances related to caregiving at home of family caregivers of people receiving palliative care at home due to cancer disease. Method Design: Descriptive, cross-sectional study. Sample: family caregivers of people in follow-up in the home care program. Period: July/2015 to December/2016. Variables: sociodemographic data, characteristics of the role of caregiver as previous experience caring, reasons for caring, living together, simultaneous care of other people, care environment preferences, perception of the relationship, time and hours assuming care. Results The sample was made up of a total of 80 relatives, 56 (70%) were women and 24 (30%) men, with a mean age of 61.75 years (SD=12.98). 55.7% of them had primary education, 45% were a pensioner followed by 23.8% who said they were working. The degree of kinship was spouse/partner (48.8%) followed by daughter (42.5%). 92.5% of caregivers identified themselves as primary caregivers while 7.5% were sole caregivers. In most cases (76.3%) they resided at the same address. In 30% of cases, caregivers also treated other dependents besides the patient.The main reasons for caregiving described were: own initiative (47.5%) and feeling obligated (36.3%). For 40% of the caregivers it was the first experience of caring. The average time caring was 12.98 months (SD=21.41), the average of hours caring per week 38.29 (SD=20.66). 53.8% of caregivers described their relationship with the patient as very intimate, however 25% of them identified that the relationship had worsened. Conclusions In home palliative care scenarios, knowing the circumstances of caregivers and caregiving environment could contribute to recognize and support family caregiving.