title: End-of-life caregiving trajectories.
abstract: The purpose of this study is to illustrate variations in caregiving trajectories as described by informal family caregivers providing end-of-life care. Instrumental case study methodology is used to contrast the nature, course, and duration of the phases of caregiving across three distinct end-of-life trajectories: expected death trajectory, mixed death trajectory, and unexpected death trajectory. The sample includes informal family caregivers (n = 46) providing unpaid end-of-life care to others suffering varied conditions (e.g., cancer, organ failure, amyotrophic lateral sclerosis). The unifying theme of end-of-life caregiving is “seeking normal” as family caregivers worked toward achieving a steady state, or sense of normal during their caregiving experiences. Distinct variations in the caregiving experience correspond to the death trajectory. Understanding caregiving trajectories that are manifest in typical cases encountered in clinical practice will guide nurses to better support informal caregivers as they traverse complex trajectories of end-of-life care.
authors.affiliation: School of Nursing and College of Medicine, The Pennsylvania State University, East University Park, PA 16802, 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: Brenda L
authors.initials: BL
authors.lastname: Baney
authors.forename: Susan J
authors.initials: SJ
authors.lastname: Loeb
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006333:Heart Failure; D006801:Humans; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D009369:Neoplasms; D018454:Spouses / Q000523:psychology; D013727:Terminal Care