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

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 valid...

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Bibliographic Details
Published in:Palliative & supportive care 2017-12, Vol.15 (6), p.644-664
Main Authors: Olivier-D'Avignon, Marianne, Dumont, Serge, Valois, Pierre, Cohen, S. Robin
Format: Article
Language:English
Subjects:
Adolescent
Bone marrow
Child psychology
Children & youth
Families & family life
Female
Focus Groups
Humans
Male
Needs analysis
Original Articles
Palliative care
Pediatrics
Psychometrics - instrumentation
Psychometrics - methods
Qualitative Research
Questionnaires
Siblings
Siblings - psychology
Surveys and Questionnaires
Teenagers
Terminally Ill - psychology
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Summary: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]. 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. 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. The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.
ISSN:1478-9515
1478-9523
DOI:10.1017/S1478951516001127