Seeking and using families' views to shape children's hospice services
Title
Seeking and using families' views to shape children's hospice services
Creator
Maynard L; Rennie T; Shirtliffe J; Vickers D
Identifier
Publisher
International Journal Of Palliative Nursing
Date
2005
Subject
Child; Female; Humans; infant; Male; Great Britain; Adult; Parents; Professional-Family Relations; Focus Groups; Needs Assessment; Consumer Satisfaction; adolescent; Preschool; infant; Newborn; Health Care; Quality Assurance; Child Health Services/organization & administration; Hospice Care/organization & administration
Description
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.
2005
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
Journal Article
Citation List Month
Backlog
URL Address
Citation
Maynard L; Rennie T; Shirtliffe J; Vickers D, “Seeking and using families' views to shape children's hospice services,” Pediatric Palliative Care Library, accessed February 17, 2025, https://pedpalascnetlibrary.omeka.net/items/show/13335.