Attending pediatric acutely ill patients at home: families’ socioeconomic characterization, expectations, and experience

Abstract Purpose To have a thorough understanding of an acute pediatric homecare program, it is essential to analyze all factors related to the matter: medical, social, economic, and families’ experience. No studies have been found describing profusely this topic in such a complex program like ours (considering diseases and treatments offered). With this study, we will obtain a fine population characterization and families’ needs understanding. This will contribute to a better knowledge of our program and the detection of its possible deficiencies. Methods This is a prospective quantitative and qualitative study. 372/532 families are asked to answer two independent questionnaires (preadmission and postadmission), aimed to: understand their socioeconomic characteristics; assess families’ expectations and experience; and identify factors influencing the homecare preference. Results are presented in frequencies and comparisons (Fisher’s exact test). Results Families have an adequate social network; workload is less than expected and most families would repeat the experience despite it; expectations regarding caregiver’s well-being at home were better than the actual situation, as some experienced anxiety or fear; and rating is better in homecare compared with inpatient care. Conclusions Despite limitations (participants’ voluntariness to respond the surveys and lack of inpatient hospitalization’s socioeconomic data to compare with homecare), this study offers the possibility of improving our service portfolio, focusing on vulnerable families’ access to the program and caregiver’s risk of burnout.