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

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

Pages

624-630

Issue

12

Volume

11

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 August 3, 2021, https://pedpalascnetlibrary.omeka.net/items/show/13335.

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