Disease trajectories and ACT/RCPCH categories in paediatric palliative care

Title

Disease trajectories and ACT/RCPCH categories in paediatric palliative care

Creator

Wood F; Simpson S; Barnes E; Hain R

Publisher

Palliative Medicine

Date

2010

Subject

Child; Female; Humans; Male; Palliative Care; Family; Attitude to Health; Interviews as Topic; Professional-Family Relations; Disease Progression; caregivers; Qualitative Research; Focus Groups; Wales; Caregivers/psychology; Family/psychology; PEDI Study; Palliative Care/psychology; Attitude to Health; Disease Progression

Description

The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children's Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.;
2010-12

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

796-806

Issue

8

Volume

24

Citation

Wood F; Simpson S; Barnes E; Hain R, “Disease trajectories and ACT/RCPCH categories in paediatric palliative care,” Pediatric Palliative Care Library, accessed July 27, 2021, https://pedpalascnetlibrary.omeka.net/items/show/13900.

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