Self-reported involvement of family members in the care of adults with CF

Abstract

Background Few empirical studies have examined the role of family caregivers in the lives of adults with CF. Methods As part of the Project on Adult Care in CF (PAC-CF), an on-going prospective, longitudinal panel study of adults with CF, 119 family members and friends of adults with CF completed a mail survey in which they reported the frequency of help they provide for their family member with CF during routine care, hospitalization, and home IV treatment. Results The 119 caregivers were mainly spouses or unmarried partners (56%) and parents (29%). Fifteen percent of caregivers were children, friends, siblings or roommates. Family caregivers for adults with CF report assisting mainly with communication and social support during routine treatment, although one third provide some clinical care on a regular basis. Family caregivers report an increase in assistance during periods of acute illness, such as during a hospitalization and home IV treatment, especially with clinical care tasks. Conclusions The depth of commitment required of families of children with CF has been well documented for decades. Our results suggest that the responsibilities of family members diminish only moderately as those with CF reach adulthood.