Laura Darcy1, Susanne Knutsson, Karina Huus, Karin Enskar. 1. Author Affiliations: School of Health Science, Jonkoping (Ms Darcy); Institution of Health Science, University College Boras, Sweden (Dr Knutsson); and CHILD Research Group, School of Health Science, Jonkoping University, Sweden (Drs Huus and Enskar).
Abstract
BACKGROUND: Providing qualified, evidence-based healthcare to children requires increased knowledge of how cancer affects the young child's life. There is a dearth of research focusing on the young child's experience of everyday life. OBJECTIVE: The purpose of this study was to explore young children's and their parents' perceptions of how cancer affects the child's health and everyday life shortly after diagnosis. METHODS: Thirteen children with newly diagnosed cancer aged 1 to 6 years and their parents, connected to a pediatric oncology unit in Southern Sweden, participated in this study through semistructured interviews. Child and parent data were analyzed as a family unit, using qualitative content analysis. RESULTS: Everyday life was spent at hospital or at home waiting to go back to hospital. Analysis led to the following categories: feeling like a stranger, feeling powerless, and feeling isolated. CONCLUSIONS: The child wants to be seen as a competent individual requiring information and participation in care. Parents need to be a safe haven for their child and not feel forced to legitimize painful and traumatic procedures by assisting with them. Nurses play a major role in the lives of children. Research with and on the young child is necessary and a way of making them visible and promoting their health and well-being. IMPLICATIONS FOR PRACTICE: Nurses need to reevaluate the newly diagnosed child's care routines so as to shift focus from the illness to the child. This requires competent nurses, secure in their caring role.
BACKGROUND: Providing qualified, evidence-based healthcare to children requires increased knowledge of how cancer affects the young child's life. There is a dearth of research focusing on the young child's experience of everyday life. OBJECTIVE: The purpose of this study was to explore young children's and their parents' perceptions of how cancer affects the child's health and everyday life shortly after diagnosis. METHODS: Thirteen children with newly diagnosed cancer aged 1 to 6 years and their parents, connected to a pediatric oncology unit in Southern Sweden, participated in this study through semistructured interviews. Child and parent data were analyzed as a family unit, using qualitative content analysis. RESULTS: Everyday life was spent at hospital or at home waiting to go back to hospital. Analysis led to the following categories: feeling like a stranger, feeling powerless, and feeling isolated. CONCLUSIONS: The child wants to be seen as a competent individual requiring information and participation in care. Parents need to be a safe haven for their child and not feel forced to legitimize painful and traumatic procedures by assisting with them. Nurses play a major role in the lives of children. Research with and on the young child is necessary and a way of making them visible and promoting their health and well-being. IMPLICATIONS FOR PRACTICE: Nurses need to reevaluate the newly diagnosed child's care routines so as to shift focus from the illness to the child. This requires competent nurses, secure in their caring role.
Authors: Eve Namisango; Katherine Bristowe; Matthew J Allsop; Fliss E M Murtagh; Melanie Abas; Irene J Higginson; Julia Downing; Richard Harding Journal: Patient Date: 2019-02 Impact factor: 3.883
Authors: Marcia A Winter; Jessica Greenlee; Nour Al Ghriwati; Katlyn N Garr; Olle Jane Z Sahler; Thomas G O'Connor Journal: SSM Ment Health Date: 2021-10-23