title: The impact on families of respite care in a children's hospice program.
abstract: With increasing trends towards home care of children with even the most complex conditions and care requirements, respite becomes critical in improving the quality of life for terminally ill children and their families. This article reports on the respite component of an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first 30 months of operation. Canuck Place, located in Vancouver, British Columbia, Canada, is the first free-standing children's hospice in North America. Findings are derived from mail-out surveys to 144 families, face-to-face interviews with 18 families, and separate questionnaires specifically directed to parents who had used Canuck Place respite services. Sixty-five parents responded to the respite questions. They cited a wide range of benefits to the ill child, the child's siblings, and to the parents themselves; they also offered a few cautions. Our discussion focuses on three "lessons learned" from this unique investigation of respite within pediatric hospice care.
authors.affiliation: Department of Family Health Care Nursing, School of Nursing, University of California, San Francisco, California, USA.
authors.forename: Betty
authors.initials: B
authors.lastname: Davies
authors.forename: Rose
authors.initials: R
authors.lastname: Steele
authors.forename: John B
authors.initials: JB
authors.lastname: Collins
authors.forename: Karen
authors.initials: K
authors.lastname: Cook
authors.forename: Stephany
authors.initials: S
authors.lastname: Smith
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D001294:Attitude to Health; D001955:British Columbia; D002648:Child; D002662:Child Health Services / Q000458:organization & administration*; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D006040:Goals; D006117:Grief; D019538:Health Care Surveys; D006699:Home Care Services / Q000458:organization & administration; D006738:Hospices / Q000458:organization & administration*; D006801:Humans; D007899:Leisure Activities; D020380:Needs Assessment; D009937:Organizational Objectives; D015397:Program Evaluation; D002666:Psychology, Child; D011788:Quality of Life; D012144:Respite Care / Q000458:organization & administration*; D035781:Siblings / Q000523:psychology; D012951:Socialization; D011795:Surveys and Questionnaires