Hostname: page-component-cd9895bd7-gxg78 Total loading time: 0 Render date: 2024-12-23T07:19:27.512Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  27 May 2016

Marianne Olivier d'avignon ,
Serge Dumont ,
Pierre Valois  and
S. Robin Cohen
Marianne Olivier d'avignon*
Affiliation:
Faculté 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, Université Laval, Québec, Canada
S. Robin Cohen
Affiliation:
Departments of Oncology and Medicine, McGill University, Montreal, Québec, Canada Lady Davis Institute, 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, Québec, Canada G1 V 0A6. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

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.

Keywords

NeedsSiblingsPediatricPalliative careQuestionnaire development
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 1 , February 2017 , pp. 20 - 31
Copyright
Copyright © Cambridge University Press 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Alderfer, M.A., Long, K.A., Lown, E.A., et al. (2010). Psychosocial adjustment of siblings of children with cancer: A systematic review. Psycho-Oncology, 19(8), 789–805.CrossRefGoogle ScholarPubMed
American Educational Research Association (AERA), American Psychological Association (APA) & National Council on Measurement in Education (NCME) (2014). Standards for educational and psychological testing. Washington, DC: American Educational Research Association.Google Scholar
Armstrong-Dailey, A. & Zarbock, S. (2009). Hospice care for children. 3rd ed. New York: Oxford University Press.Google Scholar
Baldwin, S. (1998). Needs assessment and community care: Clinical practice and policy making. Oxford: Butterworth–Heinemann.Google Scholar
Barlow, J.H. & Ellard, D.R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child: Care, Health and Development, 32(1), 19–31.Google Scholar
Beaton, D.E., Bombardier, C., Katz, J.N., et al. (2001). A taxonomy for responsiveness. Journal of Clinical Epidemiology; 54(12), 1204–1217.CrossRefGoogle ScholarPubMed
Canadian Cancer Society (2014). Canadian cancer statistics, 2014. Toronto: Canadian Cancer Society.Google Scholar
Contro, N. & Scofield, S. (2006). The power of their voices: Child and family assessment in pediatric palliative care. In Oxford textbook of palliative care for children. Goldman, A. et al. (eds.), pp. 143–153. New York: Oxford University Press.Google Scholar
Contro, N. & Scofield, S. (2012). The power of their voices: Assessing the child and the family. In Oxford textbook of palliative care for children, 2nd ed. Goldman, A. et al. (eds.), pp. 58–67. New York: Oxford University Press.CrossRefGoogle Scholar
Copay, A.G., Subach, B.R., Glassman, S.D., et al. (2007). Understanding the minimum clinically important difference: A review of concept and methods. The Spine Journal, 7, 541–546.CrossRefGoogle ScholarPubMed
Deschesnes, M. (1998). Étude de la validité et de la fidélité de l'indice de détresse psychologique de santé Québec (IDPSQ–14), chez une population adolescente [Assessment of the validity and reliability of Santé Québec's psychological distress index (IDPSQ–14) in an adolescent population]. Psychologie Canadienne, 39(4), 288–298.Google Scholar
de Vaus, D. (2002 a). Analyzing social science data: 50 key problems in data analysis. Thousand Oaks, CA: Sage.Google Scholar
de Vaus, D. (2002 b). Survey in social research, 5th ed. London: Routledge.Google Scholar
DeVellis, R.F. (2012). Scale development: Theory and applications, 3rd ed. Thousand Oaks, CA: Sage.Google Scholar
Deyo, R.A., Diehr, P. & Patrick, D. (1991). Reproducibility and responsiveness of health status measure statistics and strategies for evaluation. Controlled Clinical Trials, 12, 142S–158S.Google Scholar
Feudtner, C., Hexem, K. & Rourke, M. (2011). Epidemiology and the care of children with complex conditions. In Textbook of interdisciplinary pediatric palliative care. Wolfe, J. et al. (eds.), pp. 7–17. Philadelphia: Elsevier Saunders.Google Scholar
Freeman, K., O'Dell, C. & Meola, C. (2003). Childhood brain tumors: Children's and siblings' concerns regarding the diagnosis and phase of illness. Journal of Pediatric Oncology Nursing, 20(3), 133–140.Google Scholar
Frenette, E., Valois, P., Lussier, Y., et al. (2000). Validité de la version abrégée du questionnaire de désirabilité sociale de Paulhus [Validity of the shortened version of Paulhus social desirability questionnaire]. Communication donnée au 68e congrès de l'Association francophone pour le savoir (ACFAS). Montreal, Québec.Google Scholar
Gaab, E.M., Owens, G. & MacLeod, R.D. (2013). The voices of young New Zealanders involved in pediatric palliative care. Journal of Palliative Care, 29(3), 186–192.Google Scholar
Graham, R., Dussel, V. & Wolfe, J. (2006). Research. In Oxford textbook of palliative care for children. Goldman, A. et al. (eds.), pp. 615–647. New York: Oxford University Press.Google Scholar
Hashemi, F. & Shokrpour, N. (2010). The impact of education regarding the needs of pediatric leukemia patients' siblings on the parents' knowledge and practice. The Health Care Manager, 29(1), 75–79.Google Scholar
Houtzager, B.A., Grootenhuis, M.A., Hoekstra-Weebers, J.E.H.M., et al. (2005). One month after diagnosis: Quality of life, coping and previous functioning in siblings of children with cancer. Child: Care, Health and Development, 31(1), 75–87.CrossRefGoogle ScholarPubMed
Hynson, J.L. & Sawyer, S.M. (2001). Paediatric palliative care: Distinctive needs and emerging issues. Journal of Paediatrics and Child Health, 37(4), 323–325.Google Scholar
Ilfeld, F.W. (1976). Further validation of a psychiatric symptom index in a normal population. Psychological Reports, 39, 1215–1228.Google Scholar
Institute of Medicine (IOM), Committee on Palliative and End-of-Life Care for Children and Families (2003). When children die: Improving palliative and end of life care for children and families. Washington, DC: The National Academic Press.Google Scholar
Jones, B.L. (2006). Companionship, control and compassion: A social work perspective on the needs of children with cancer and their families at the end of life. Journal of Palliative Medicine, 9(3), 774–788.Google Scholar
Jones, B.L., Gilmer, M.J., Parker-Raley, J., et al. (2011). Parents' and siblings' relationships and the family experience. In Textbook of interdisciplinary pediatric palliative care. Wolfe, J. et al. (eds.), pp. 135–147. Philadelphia: Elsevier Saunders.CrossRefGoogle Scholar
Lapwood, S. & Goldman, A. (2012). Impact on the family. In Oxford textbook of palliative care for children, 2nd ed. Goldman, A. et al. (eds.), pp. 117–129. New York: Oxford University Press.Google Scholar
Laufersweiler-Plass, C., Rudnik-Schöneborn, S., Zerres, K., et al. (2003). Behavioural problems in children and adolescents with spinal muscular atrophy and their siblings. Developmental Medicine & Child Neurology, 45, 44–49.Google Scholar
Lenton, S., Goldman, A., Eaton, N., et al. (2006). Development and epidemiology. In Oxford textbook of palliative care for children. Goldman, A. et al. (eds.), pp. 3–13. New York: Oxford University Press.Google Scholar
Lewis, M. & Prescott, H. (2006). Impact of life-limiting illness on the family. In Oxford textbook of palliative care for children. Goldman, A. et al. (eds.), pp. 154–178. New York: Oxford University Press.Google Scholar
Long, K.A., Alderfer, M.A., Ewing, L.J., et al. (2013). The role of contextual threat in predicting self-reported distress among siblings of children with cancer. Journal of Clinical Psychology in Medical Settings, 20(2), 199–208.CrossRefGoogle ScholarPubMed
Long, K.A., Goldish, M., Lown, E.A., et al. (2015). Major lessons learned from a nationally based community–academic partnership to childhood cancer. Families, Systems, & Health, 33(1), 61–67.Google Scholar
McCallum, R.C., Widamen, K.F., Zhang, S., et al. (1999). Sample size in factor analysis. Psychological Methods, 4(1), 84–99.CrossRefGoogle Scholar
McNamara-Goodger, K. & Feudtner, C. (2012). History and epidemiology. In Oxford textbook of palliative care for children, 2nd ed. Goldman, A. et al. (eds.), pp. 3–11. New York: Oxford University Press.CrossRefGoogle Scholar
Ministère de la Santé et des Services Sociaux du Québec [MSSS] (2006). Normes en matière de soins palliatifs pédiatriques [Québec standards of practice for pediatric palliative care]. Québec: Auteur.Google Scholar
Munro, B.H. (2005). Statistical methods for health care research, 5th ed. Philadelphia: Lippincott Williams & Wilkins.Google Scholar
Nolbris, M., Enskär, K. & Hellström, A.L. (2006). Experience of siblings of children treated for cancer. European Journal of Oncology Nursing, 11, 106–112.Google Scholar
Nunnally, J.C. & Bernstein, I.H. (1994). Psychometric theory, 3rd ed. New York: McGraw-Hill.Google Scholar
Olivier d'Avignon, M., Dumont, S., Valois, P. et al. (2016). The needs of siblings of children with a life-threatening illness, part 1: Conceptualization and development of a measure. Palliative & Supportive Care. Manuscript submitted for publication, under review.Google Scholar
Packman, W., Greenhalgh, J., Chesterman, B., et al. (2005). Siblings of pediatric cancer patients: The quantitative and qualitative nature of quality of life. Journal of Psychosocial Oncology, 23(1), 87–108.CrossRefGoogle Scholar
Patterson, P., Millar, B. & Visser, A. (2011). The development of an instrument to assess the unmet needs of young people who have a sibling with cancer: Piloting the Sibling Cancer Needs Instrument (SCNI). Journal of Pediatric Oncology Nursing, 28(1), 16–26.CrossRefGoogle ScholarPubMed
Patterson, P., McDonald, F.E.J., Butow, P., et al. (2014). Psychometric evaluation of the Sibling Cancer Needs Instrument (SCNI): An instrument to assess the psychosocial unmet needs of young people who are siblings of cancer patients. Supportive Care in Cancer, 22(3), 653–665.Google Scholar
Paulhus, D. (1991). Balanced inventory of desirable responding. In Measure of personality and social psychological attitude. Robinson, J.P. et al. (eds.), pp. 17–60. New York: Academic Press.Google Scholar
Price, J., Jordan, J. & Prior, L. (2013). A consensus for change: Parent and professional perspectives on care for children at the end of life. Issues in Comprehensive Pediatric Nursing, 36(1–2), 70–87.CrossRefGoogle ScholarPubMed
Rascle, N., Aguerre, C., Bruchon-Schweitzer, M., et al. (1997). Soutien social et santé: Adaptation française du questionnaire de soutien social de Sarason, le S.S.Q. [Social support and health: Sarason's Social Support Questionnaire. French adaptation and validation]. Les Cahiers Internationaux de Psychologie Sociale, 33, 35–51.Google Scholar
Read, J., Kinali, M., Muntoni, F., et al. (2011). Siblings of young people with Duchenne muscular dystrophy: A qualitative study of impact and coping. European Journal of Paediatric Neurology, 15(1), 21–28.Google Scholar
Robinson, L. & Mahon, M. (1997). Sibling bereavement: A concept analysis. Death Studies, 21, 477–499.Google Scholar
Sabourin, S., Valois, P. & Lussier, Y. (2005). L'utilisation de questionnaires en recherche: Une solution pratique qui nécessite une démarche rigoureuse [The use of questionnaires in research: A practical solution that requires a rigorous method]. In Recherche psychosociale, 2nd ed. Bouchard, S. & Cyr, C. (eds.), pp. 279–320. Québec: Presses de l'Université Québec.Google Scholar
Sarason, I.G., Levine, H.M., Basham, R.B., (1983). Assessing social support: The social support questionnaire. Journal of Personality and Social Psychology, 44(1), 127–139.Google Scholar
Sharpe, D. & Rossiter, L. (2002). Siblings of children with a chronic illness: A meta-analysis. Journal of Pediatric Psychology, 27(8), 699–710.CrossRefGoogle ScholarPubMed
Sloper, P. (2000). Experiences and support needs of siblings of children with cancer. Health & Social Care in the Community, 8(5), 298–306.Google Scholar
Sourkes, B., Frankel, L., Brown, M., et al. (2005). Food, toys and love: Pediatric palliative care. Current Problems in Pediatric and Adolescent Health Care, 35(9), 350–386.Google Scholar
Statistics Canada (2014). Population by sex and age group. CANSIM, table 051–0001. Available from http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/demo10a-eng.htm.Google Scholar
Stevenson, M., Achille, M. & Lugasi, T. (2013). Pediatric palliative care in Canada and the United States: A qualitative metasummary of the needs of patients and families. Journal of Palliative Medicine, 16(5), 566–577.Google Scholar
Streiner, D.L. & Norman, G.R. (2008). Health measurement scales: A practical guide to their development, 4th ed. New York: Oxford University Press.Google Scholar
Tabachnick, B. & Fidell, L.S. (2006). Using multivariate statistics. Boston: Pearson/Allyn & Bacon.Google Scholar
Vallières, E.F. & Vallerand, R.J. (1990). Traduction et validation Canadienne-Française de l'échelle de l'estime de soi de Rosenberg [French Canadian translation and validation of the Rosenberg Self-Esteem Scale]. International Journal of Psychology, 25, 305–316.Google Scholar
van Horne, E. & Kautz, D. (2007). Promotion of family integrity in the acute care setting. A review of the literature. Dimensions of Critical Care Nursing, 26(3), 101–107.Google Scholar
Whittam, E. (1993). Terminal care of the dying child: Psychosocial implications of care. Cancer, 71(Suppl. 10), 3450–3462.Google Scholar
Wilson, D.M., MacAdam, M., Olson, K., et al. (2003). Pediatric end-of-life care. Final report. Integrated end-of-life care: A Health Canada synthesis research project. Unpublished research report. Edmonton: Authors.Google Scholar
Wolfe, J. & Siden, H. (2012). Research in pediatric paediatric palliative care. In Oxford textbook of palliative care for children, 2nd ed. Goldman, A. et al. (eds.), pp. 441–457. New York: Oxford University Press.Google Scholar
Woodgate, R.L. (1999). Social support in children with cancer: A review of the literature. Journal of Pediatric Oncology Nursing, 16, 210–213.Google Scholar
Woodgate, R.L. (2006). Siblings' experiences with childhood cancer. Cancer Nursing, 29(5), 406–414.Google Scholar
Supplementary material: File

Olivier d'avignon supplementary material

Appendix

Download Olivier d'avignon supplementary material(File)
File 139.3 KB