title: A model of caregiving through the end of life: seeking normal.
abstract: Informal family caregivers provide significant contributions to end-of-life (EOL) care. A theoretical model of the phases and transitions of EOL caregiving was explicated using grounded theory methods to explore the experiences of 46 family caregivers of adults suffering a variety of life-limiting conditions. The derived model describes four phases of caregiving spanning prediagnosis through bereavement. Phases are demarcated by key transitions experienced when the illness progression manifestly challenges the established "steady state" achieved by the caregiver. The basic social process was defined as "seeking normal" as caregivers sought reliable patterns of everyday life while meeting the demands of caregiving. Understanding the progression of EOL caregiving enables clinicians to better support family caregivers as both coproviders and corecipients of care.
authors.affiliation: School of Nursing and College of Medicine, The Pennsylvania State University, University Park, USA. jlp198@psu.edu
authors.forename: Janice
authors.initials: J
authors.lastname: Penrod
authors.forename: Judith E
authors.initials: JE
authors.lastname: Hupcey
authors.forename: Peggy Z
authors.initials: PZ
authors.lastname: Shipley
authors.forename: Susan J
authors.initials: SJ
authors.lastname: Loeb
authors.forename: Brenda
authors.initials: B
authors.lastname: Baney
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001601:Bereavement; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D013727:Terminal Care; D014481:United States