title: Caregiving and its impact on families of the terminally ill.
abstract: Changes in the health care system have meant that increasing numbers of the terminally ill receive the majority of their care at home. The purpose of this paper was to document patterns of informal and formal care provided to the terminally ill and assess the impact caregiving has on family members. One hundred and fifty-one family caregivers were recruited for interviews from two community-nursing agencies in an urban region of the province of Ontario, Canada. The majority of respondents 119 (79%) were the female spouses of the patient. The numbers of caregivers providing assistance in specific functional activities were: bathing, 133 (88%); mobility, 123 (81%); dressing and undressing, 114 (76%); toileting, 101(67%), and assistance at night 97 (64%). Sixty-two (41%) respondents reported that they had been providing some form of caregiving for over one year. They also reported that physical demands in caregiving increased substantially during the last three months of the care recipient's life. As family caregivers provided more assistance in activities of daily living they were at greater risk of reporting high caregiver burden. The results of this paper identify the types of care provided by family caregivers of the terminally ill and the impact these demands have on the family caregiver.
authors.affiliation: Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario L8N 1G6, Canada. brazilk@mcmaster.ca
authors.forename: K
authors.initials: K
authors.lastname: Brazil
authors.forename: M
authors.initials: M
authors.lastname: Bédard
authors.forename: K
authors.initials: K
authors.lastname: Willison
authors.forename: M
authors.initials: M
authors.lastname: Hode
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D015331:Cohort Studies; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D005260:Female; D006699:Home Care Services / Q000706:statistics & numerical data; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009864:Ontario; D010166:Palliative Care; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D018454:Spouses / Q000523:psychology; D013727:Terminal Care / Q000523:psychology*; D013995:Time