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The needs of siblings of children with a life-threatening illness, part 1: Conceptualization and development of a measure

Published online by Cambridge University Press:  26 January 2017

Marianne Olivier-D'Avignon ,
Serge Dumont ,
Pierre Valois  and
S. Robin Cohen
Marianne Olivier-D'Avignon*
Affiliation:
Faculté des Sciences de l'Éducation, Pavillon des Sciences de l'Éducation, Université Laval, Québec, Canada
Serge Dumont
Affiliation:
École de Service Social, Université Laval, Québec. Canada
Pierre Valois
Affiliation:
Faculté des Sciences de l'Éducation, Pavillon des Sciences de l'Éducation, Université Laval, Québec, Canada
S. Robin Cohen
Affiliation:
Departments of Oncology and Medicine, McGill University, Montreal, Québec, Canada
*
Address correspondence and reprint requests to: Marianne Olivier-d'Avignon, Faculté des Sciences de l'Éducation, Pavillon des Sciences de l'Éducation, Université Laval, Local 738, 2320, rue des Bibliothèques, Québec, Canada G1 V 0A6. E-Mail: Marianne.davignon@fse.ulaval.ca.
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Abstract

Objective:

The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children].

Method:

The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings.

Results:

The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items.

Significance of results:

The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.

Keywords

NeedsSiblingPediatricPalliative careQuestionnaire development
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 6 , December 2017 , pp. 644 - 664
Copyright
Copyright © Cambridge University Press 2017 

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