Pilot study of family and social aspects percibed by caregivers of palliative cancer outpatients

Purpose: an interview was performed to main caregivers of cancer patients included in home palliative programs in the rural areas surrounding the city of Huelva (South western Spain) to know their perceptions concerning social, economics and satisfaction aspects in relation to the labour they perform with the cancer patient. Material and methods: a inquiry was formerly performed including data on demographic (age, sex, study level, social and economical level and relationship with the patient), and social (questions on family relationships, economical aspects as well as autosatisfaction with the home attention to the patient). Using this inquiry, an interview was performed to main caregivers of cancer patients in palliative programs randomly chosen from the rural area surrounding the city of Huelva (Southwestern Spain) who were attended by the 2th Home Attention Unit of the Anti Cancer Spanish Association (AECC) of Huelva during 2003. This interview was performed prospectively when patients were at home at least two weeks. Results: the demographic profile of these caregivers was: woman, medium-high aged, without studies or with primary ones, medium socioeconomic level and with a family relationship very close to the patient. An analysis of their social aspects showed that the vast majority of them referred a 24 hours dedication to the patient with changes in their daily schedule of time and as a result the feeling of having no free time. Most of them attended their families equal or better than they did it usually, and much better than when the patient was at the hospital. Most families keep a normal schedule of time in those other family members not being the main caregiver. The relationships with the rest of family members living at home and those who not tend to maintain equal or better when the patient is and attended at home. A longer time with the patient at home does not produce a normalization of the family way of life, usually it worsen. Analyzing economic aspects, most of them recognize an increase in their costs, though this increase is usually considered as slight and, the vast majority, recognize spending less now in comparison with their time at the hospital. Almost no one of them considered the situation of the patient as an economical charge to the family. Just a few patients received economic helps and none social ones. All interviewed caregivers feel satisfied with the experience of having attended their patients at home and all of them as well were decided to repeat their experiences in case of being necessary. Conclusions: the profile of the main caregiver of cancer patients attended at home in the rural area surrounding the city of Huelva is: a) mid to high-aged woman, with a very close relationship with the patient, without or with primary studies and with a medium economical level; b) they referred a complete dedication to the patient what preserves the daily activities of the rest of the family at home with who they maintain a good relationship; c) they did not receive social helps and only in a few cases an economic aid is received, mainly form other members of the family; y d) they referred to be satisfied with their labour and they would be ready to repeat the experience in case of being necessary.