Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families

Title

Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families

Creator

Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L

Publisher

Journal Of Child Health Care

Date

2015

Subject

adolescent; Child; Humans; Palliative Care; referral and consultation; Family; Interviews as Topic; disabled children; Health Services Needs and Demand; Health Services Research; Child Health Services; Focus Groups; Children’s participation; quality of care

Description

Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
2015-09

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

320-333

Issue

3

Volume

19

Citation

Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L, “Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families,” Pediatric Palliative Care Library, accessed August 3, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14511.

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