An exploration of the experiences of children affected by life limiting conditions and their families
An exploration of the experiences of children affected by life limiting conditions and their families
This thesis provides an account of a qualitative study that set out to understand more about the needs and experiences of children affected by life limiting conditions and their families. Participants included eleven children, their parents and siblings from ten families (39 participants in all).
The theoretical approach is drawn towards interpretism and constructionism. Case study provided the overarching strategy and aspects of the design were drawn from Grounded Theory. The methods combined participant observation, interviews and an invitation for young participants, especially, to use their own artwork and photographs to help them explain their day-to-day experiences.
Findings are presented initially through five conceptual cases (all based on the life stories of more than one child). The study identified recurring ‘moments of realisation’ in the children’s life stories and revealed that these were the times when families recognised the threat to the child’s life most clearly and needed to communicate with each other but struggled to do so. It is hoped that conceptual cases and the concept of ‘moments of realisation’ will provide professionals with new ways to think about the needs and experiences of life limited children and their families.
Participants in the research used a range of indirect topics to talk about the child’s illness and dying through the research process. These are used to suggest new ideas for helping life limited children and their families to talk to each other about the child’s illness and its consequences.
The findings suggest that children gradually integrate information about their illness and short life expectancy into their sense of self and their life story.
University of Southampton
Menezes, Antoinette Maria
0f7ef72b-6321-438c-b787-98b589b5a4ff
2007
Menezes, Antoinette Maria
0f7ef72b-6321-438c-b787-98b589b5a4ff
Menezes, Antoinette Maria
(2007)
An exploration of the experiences of children affected by life limiting conditions and their families.
University of Southampton, Doctoral Thesis.
Record type:
Thesis
(Doctoral)
Abstract
This thesis provides an account of a qualitative study that set out to understand more about the needs and experiences of children affected by life limiting conditions and their families. Participants included eleven children, their parents and siblings from ten families (39 participants in all).
The theoretical approach is drawn towards interpretism and constructionism. Case study provided the overarching strategy and aspects of the design were drawn from Grounded Theory. The methods combined participant observation, interviews and an invitation for young participants, especially, to use their own artwork and photographs to help them explain their day-to-day experiences.
Findings are presented initially through five conceptual cases (all based on the life stories of more than one child). The study identified recurring ‘moments of realisation’ in the children’s life stories and revealed that these were the times when families recognised the threat to the child’s life most clearly and needed to communicate with each other but struggled to do so. It is hoped that conceptual cases and the concept of ‘moments of realisation’ will provide professionals with new ways to think about the needs and experiences of life limited children and their families.
Participants in the research used a range of indirect topics to talk about the child’s illness and dying through the research process. These are used to suggest new ideas for helping life limited children and their families to talk to each other about the child’s illness and its consequences.
The findings suggest that children gradually integrate information about their illness and short life expectancy into their sense of self and their life story.
Text
1120370.pdf
- Version of Record
More information
Published date: 2007
Identifiers
Local EPrints ID: 466357
URI: http://eprints.soton.ac.uk/id/eprint/466357
PURE UUID: b7a75737-26b5-4140-80ba-0391ba3c84cd
Catalogue record
Date deposited: 05 Jul 2022 05:12
Last modified: 16 Mar 2024 20:39
Export record
Contributors
Author:
Antoinette Maria Menezes
Download statistics
Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.
View more statistics