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Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals

Published online by Cambridge University Press:  31 January 2017

Josianne Avoine-Blondin ,
Véronique Parent ,
Magali Lahaye ,
Nago Humbert ,
Michel Duval  and
Serge Sultan
Josianne Avoine-Blondin
Affiliation:
Department of Psychology, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada Department of Psychology, Université de Sherbrooke, Québec, Canada
Véronique Parent
Affiliation:
Department of Psychology, Université de Sherbrooke, Québec, Canada
Magali Lahaye
Affiliation:
Faculty of Psychology, Université Catholique de Louvain, Louvain-la-Neuve, Belgium
Nago Humbert
Affiliation:
Department of Psychology, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada Department of Hematology/Oncology, Université de Montréal, Montréal, Québec, Canada
Michel Duval
Affiliation:
Department of Psychology, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada Department of Hematology/Oncology, Université de Montréal, Montréal, Québec, Canada
Serge Sultan*
Affiliation:
Department of Psychology, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada Department of Hematology/Oncology, Université de Montréal, Montréal, Québec, Canada
*
Address correspondence and reprint requests to: Serge Sultan, Department of Hematology/Oncology, Centre Hospitalier Universitaire Sainte-Justine, 3175, Chemin de la Côte-Sainte-Catherine, Montréal H3 T 1C5, Québec, Canada. E-Mail : serge.sultan@umontreal.ca.
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Abstract

Objective:

The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement strategies are available. The present study aims to describe the domains of QoL in the context of PPC in oncology, according to the perceptions of professional caregivers.

Method:

Semistructured interviews were conducted with a random sample of 20 professional caregivers from the Division of Hematology/Oncology at Le Centre Hospitalier Universitaire Sainte-Justine (Montréal, Canada). The caregivers were asked about their perceptions about the QoL of the children they have cared for in this context. The data were analyzed using inductive thematic content analysis.

Results:

The analysis allowed us to identify seven domains of QoL: “physical comfort,” “alleviation of psychological suffering,” “fun and the present moment,” “sense of control,” “feeling valued and appreciated,” “feeling that life goes on,” and “meaningful social relationships.”

Significance of Results:

Caregivers recount the regard that should be accorded to maintaining well-being and a sense of fun, as well as fostering the child's abilities, taking account of the progression of the disease, and to fulfilling his or her needs, especially social ones. Our results also demonstrate that all domains were positively referred to by professional caregivers. The data from our study will lead to better assessment of QoL according to the trajectory of a child with advanced cancer while undergoing PPC.

Keywords

Pediatric palliative careQuality of lifeCancerProfessionalsQualitative study
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 5 , October 2017 , pp. 565 - 574
Copyright
Copyright © Cambridge University Press 2017 

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