title: Seeking and using families' views to shape children's hospice services.
abstract: Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus groups followed by lunch to discuss how staff communicated with them about their child's care, their family support needs, and how staff liaised with other professionals and organizations. There was general commendation of hospice services (in-house and community), but parents wished for more quantity and consistency with all elements of the care model. There was tension between respite and end-of-life care needs. Parents considered that the myth of hospices being 'just for death' needed dispelling and wanted other professionals to be more aware of its role, and the choice of earlier referral. Transition, both age and prognosis related, caused concern, with anxiety about long-term future or loss of support when prognosis improved. Parents also wanted better information about practical help and psycho-social support as well as up-to-date information about their child's treatment and management from all care providers.
authors.affiliation: Education and Development, East Anglia's Children's Hospices, Church Lane, Milton, Cambridge, UK. linda.maynard@each.org.uk
authors.forename: Linda
authors.initials: L
authors.lastname: Maynard
authors.forename: Tracy
authors.initials: T
authors.lastname: Rennie
authors.forename: Julia
authors.initials: J
authors.lastname: Shirtliffe
authors.forename: David
authors.initials: D
authors.lastname: Vickers
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002662:Child Health Services / Q000458:organization & administration; D002675:Child, Preschool; D003258:Consumer Behavior; D005260:Female; D017144:Focus Groups; D017051:Hospice Care / Q000458:organization & administration; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D020380:Needs Assessment; D010290:Parents; D011368:Professional-Family Relations; D011785:Quality Assurance, Health Care; D006113:United Kingdom