title: Understanding family responses to life-limiting illness: In-depth interviews with hospice patients and their family members.
abstract: Understanding family dynamics is a key component in providing comprehensive care for persons with progressive illnesses and their caregivers. The purpose of this study was to investigate what families experience during an advancing illness and to describe their pattems of response. In-depth interviews (n=108) were conducted with families two weeks after hospice admission. Interviews were tape recorded, transcribed, and analyzed using qualitative methods. Six modes were distilled: reactive (illness generates intense responses), advocacy (vulnerability ignites assertive actions), fused (illness and decline are shared experiences), dissonant (diametrically opposed viewpoints cause struggle), resigned (decline and death are anticipated), and closed (outward responses are impassive). Three events triggered movement from one mode to another: (1) functional changes, (2) crisis events, and (3) provider communication. Providers who understand varied family reactions can ease the patient's suffering, assist relatives in providing effective care, and prepare them for the approaching death.
authors.affiliation: University at Buffalo School of Social Work, Buffalo, New York, USA.
authors.forename: Deborah P
authors.initials: DP
authors.lastname: Waldrop
authors.forename: Robert A
authors.initials: RA
authors.lastname: Milch
authors.forename: Judith A
authors.initials: JA
authors.lastname: Skretny
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D005190:Family / Q000523:psychology*; D005260:Female; D006738:Hospices; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D019452:Terminally Ill