The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS

2016 ◽  
Vol 15 (1) ◽  
pp. 20-31 ◽  
Author(s):  
Marianne Olivier d'avignon ◽  
Serge Dumont ◽  
Pierre Valois ◽  
S. Robin Cohen
Keyword(s):  
Intraclass Correlation ◽  
Temporal Stability ◽  
Psychometric Validation ◽  
Critically Ill Children ◽  
Factorial Structure ◽  
Future Studies ◽  
Life Threatening Illness ◽  
Preliminary Validation ◽  
New Instrument ◽  
Life Threatening

AbstractObjective:Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument.Method:In a prospective cohort study, the 48-item instrument was administered via a website or paper to 58 siblings.Results:Our study revealed that the measure has an estimated internal consistency of 0.96 and a temporal stability intraclass correlation coefficient (ICC) of 0.86 (p < 0.01). Its convergence validity is also satisfactory.Significance of results:Our findings suggest that the IBesFEMS is highly relevant for pediatric palliative care clinicians and researchers. Future studies should investigate its factorial structure and predictive validities.

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

2017 ◽  
Vol 15 (6) ◽  
pp. 644-664 ◽  
Author(s):  
Marianne Olivier-D'Avignon ◽  
Serge Dumont ◽  
Pierre Valois ◽  
S. Robin Cohen
Keyword(s):  
Qualitative Methodology ◽  
Critically Ill Children ◽  
Second Phase ◽  
Difficult Situation ◽  
Promising Tool ◽  
Third Phase ◽  
Life Threatening Illness ◽  
Preliminary Version ◽  
Life Threatening ◽  
Selection Of

ABSTRACTObjective: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.

Translation and Validation of the Toronto Pain Management Index, French–Canadian Version

2017 ◽  
Vol 50 (2) ◽  
pp. 49-56 ◽  
Author(s):  
Dave A. Bergeron ◽  
Nicole Bolduc ◽  
Cécile Michaud ◽  
Johanne Lapré ◽  
Patricia Bourgault
Keyword(s):  
Pain Management ◽  
Intraclass Correlation ◽  
Temporal Stability ◽  
French Canadian ◽  
Significant Evidence ◽  
Knowledge And Beliefs ◽  
Pain Management Index ◽  
Preliminary Validation ◽  
Translation And Validation ◽  
Nurses Knowledge

Background To provide effective pain management, nurses must have sufficient knowledge and adequate beliefs about pain management. In Quebec, however, nurses seem to be generally uninvolved in pain management, and there is little significant evidence shedding light on nurses’ pain management knowledge and beliefs in postoperative settings. To perform such studies, a valid questionnaire in French to assess nurses’ knowledge and beliefs is required. Some valid questionnaires are available in English, but none are available in French. Purpose This article describes the process of translation, adaptation, and preliminary validation of the Toronto Pain Management Index into French. Results For temporal stability of the Toronto Pain Management Index, French–Canadian version, the result of intraclass correlation coefficient for the total score of this questionnaire is 0.59 (CI: 0.44–0.72). Conclusion Following this process, the French version of this questionnaire has suitable face and content validity and can be used to evaluate nurses’ knowledge and beliefs about pain management in postoperative settings.

Hope Is a Thing with Feathers

Save My Kid ◽  
2020 ◽  
pp. 3-23
Author(s):  
Amanda M. Gengler
Keyword(s):  
Critically Ill ◽  
Family Life ◽  
Healthcare Providers ◽  
Critically Ill Children ◽  
Health Capital ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Basic Concepts ◽  
Reproduction Of Inequality

Since families with critically ill children have different resources available to them, they take different approaches to managing their child’s life-threatening illness. The author introduces basic concepts that are analyzed over the course of the book, including care-captaining, which involves working hard to influence the course of their child’s treatment, and care-entrusting, which involves deferring to the judgement of their child’s healthcare providers. Additionally, the chapter covers the topic of healthcare inequality and cultural health capital, emotions and the reproduction of inequality in family life, and more.

Review of Adapting to Life-Threatening Illness.

1987 ◽  
Vol 32 (10) ◽  
pp. 906-906
Author(s):  
No authorship indicated
Keyword(s):  
Life Threatening Illness ◽  
Life Threatening

Life-threatening Illness as Precursor to Posttraumatic Growth

2013 ◽  
Author(s):  
Lawrence G. Calhoun ◽  
◽  
Jay Azarow ◽  
Tzipi Weiss ◽  
Joel Millam
Keyword(s):  
Posttraumatic Growth ◽  
Life Threatening Illness ◽  
Life Threatening

Sophistry and Circumstance at the End of Life

2008 ◽  
Vol 5 (1) ◽  
pp. 81-88
Author(s):  
Philip Berry
Keyword(s):  
Liver Failure ◽  
Medical Personnel ◽  
Medical Decision ◽  
Loss Of Consciousness ◽  
Supportive Treatment ◽  
Medical Decisions ◽  
Life Threatening Illness ◽  
Two Factors ◽  
Life Threatening ◽  
Counselling Process

When life-threatening illness robs a patient of the ability to express their desires, medical personnel must work through the issues of management and prognosis with relatives. Management decisions are guided by medical judgement and the relatives’ account of the patient’s wishes, but difficulties occur when distance grows between these two factors. In these circumstances the counselling process may turn into a doctor-led justification of the medical decision. This article presents two strands of dialogue, in which a doctor, counselling for and against continuation of supportive treatment in two patients with liver failure, demonstrates selectivity and inconsistency in constructing an argument. The specific issues of loss of consciousness (with obscuration of personal identity), statistical ‘futility’ and removal of autonomy are explored and used to bolster diametrically opposed medical decisions. By examining the doctor’s ability to interpret these issues according to circumstance, the author demonstrates how it is possible to shade medical facts depending on the desired outcome.

scholarly journals More comprehensively measuring quality of life in life-threatening illness: the McGill Quality of Life Questionnaire – Expanded

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
S. Robin Cohen ◽  
Lara B. Russell ◽  
Anne Leis ◽  
Javad Shahidi ◽  
Pat Porterfield ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Second Order ◽  
Model Fit ◽  
Life Questionnaire ◽  
Quality Of Life Questionnaire ◽  
Healthcare Environment ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Order Factor

Abstract Background Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) – Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL – Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. Methods Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. Results Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). Conclusions MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

Sign in / Sign up

Export Citation Format

Share Document