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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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References

REFERENCES

Adams, D.W. & Deveau, E.J. (1987). When a brother or sister is dying of cancer: The vulnerability of adolescent sibling. Death Studies, 11(4), 279–295.Google Scholar
American Educational Research Association, American Psychological Association, and the National Council on Measurement in Education (2014). Standards for educational and psychological testing. Washington, DC: American Educational Research Association.Google Scholar
Baldwin, S. (1998). Needs assessment and community care: Clinical practice and policy making. Oxford: Butterworth–Heinemann.Google Scholar
Ballard, K.L. (2004). Meeting the needs of siblings of children with cancer. Pediatric Nursing, 30(5), 394–401.Google Scholar
Bonuck, K.A. (1996). Theory and method: A social work approach to unmet needs. Administration in Social Work, 20(2), 29–40.Google Scholar
Brennan, C., Hugh-Jones, S. & Aldridge, J. (2012). Paediatric life-limiting conditions: Coping and adjustment in siblings. Journal of Health Psychology, 18(6), 813–824. Epub ahead of print Sep 4. Available from http://journals.sagepub.com/doi/pdf/10.1177/1359105312456324.Google Scholar
Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Cambridge: Harvard University Press.Google Scholar
Canadian Hospice Palliative Care Association [CHPCA] & Canadian Network of Palliative Care for Children [CNPCC] (2006). Pediatric hospice palliative care: Guiding principles and norms of practice. Ottawa: CHPCA and CNPCC. Available from http://www.chpca.net/media/7841/Pediatric_Norms_of_Practice_March_31_2006_English.pdf.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 family. In Oxford textbook of palliative care for children, 2nd ed. Goldman, A. et al. (eds.), pp. 58–67. New York: Oxford University Press.Google Scholar
Contro, N.A., Larson, J., Scofield, S., et al. (2004). Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics, 114(5), 1248–1252.CrossRefGoogle ScholarPubMed
Crocker, L. & Algina, J. (2006). Introduction to classical and modern test theory. Mason, OH: Cengage Learning.Google Scholar
Davis, L.L. (1992). Instrument review: Getting the most from a panel of experts. Applied Nursing Research, 5(4), 194–197.Google Scholar
DeVellis, R.F. (2012). Scale development: Theory and applications, 3rd ed. Thousand Oaks, CA: Sage Publications.Google Scholar
Dighe, M., Jadhav, S., Muckaden, M.A., et al. (2008). Parental concerns in children requiring palliative care. Indian Journal of Palliative Care, 14(1), 16–22.CrossRefGoogle Scholar
Duncan, J., Spengler, E. & Wolfe, J. (2007). Providing pediatric palliative care: PACT in action. The American Journal of Maternal and Child Nursing, 32(5), 279–287.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Feudtner, C., Zhong, W., Faerber, J., et al. (2015). Pediatric end-of-life and palliative care: Epidemiology and health service use. In Dying in America: Improving quality and honoring individual preferences near the end of life. Committee on Approaching Death: Addressing Key End-of-Life Issues (eds.), Appendix F. Washington, DC: National Academies Press.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
Grant, J.S. & Davis, L.L. (1997). Selection and use of content experts for instrument development. Research in Nursing & Health, 20(3), 269–274.3.0.CO;2-G>CrossRefGoogle ScholarPubMed
Guide, J., Lobato, D., Kao, B., et al. (2004). Discordance between sibling and parent reports of the impact of chronic illness and disability on siblings. Children's Health Care, 33(1), 77–92.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.CrossRefGoogle ScholarPubMed
Hassanein, R.S. (1988). Barriers to research in allied health. Journal of Allied Health, 17(3), 175–187.Google Scholar
Haynes, S.N., Richard, D.C.S. & Kubany, E.S. (1995). Content validity in psychological assessment: A functional approach to concepts and methods. Psychological Assessment, 7(3), 238–247.CrossRefGoogle Scholar
Houtzager, B.A., Grootenhuis, M.A., Caron, H.N., et al. (2005). Sibling self-report, parental proxies, and quality of life: The importance of multiple informants for siblings of a critically ill child. Pediatric Hematology and Oncology, 22(1), 25–40.Google Scholar
Hutson, S.P. & Alter, B.P. (2007). Experiences of siblings of patients with Fanconi anemia. Pediatric Blood and Cancer, 48(1), 72–79.Google Scholar
Hynson, J.L. (2006). The child's journey: Transition from health to ill-health. In Oxford textbook of palliative care for children. Goldman, A. et al. (eds.), pp. 14–27. New York: Oxford University Press.Google Scholar
Institute of Medicine [IOM] (2003). When children die; Improving palliative and end-of-life care for children and families. Fields, M.J. & Behrman, R.E. (eds.). Washington, DC: The National Academies 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.Google Scholar
Kenney, K. (2010). Social support and health-related quality of life among healthy middle-childhood aged siblings of chronically ill children . Doctoral dissertation. New York: Columbia University.Google Scholar
Klassen, A.F., Strohm, S.J., Maurice-Stam, H., et al. (2010). Quality-of-life questionnaires for children and childhood cancer survivors: A comparison of available measures. Supportive Care in Cancer, 18(9), 1207–1217. Epub ahead of print Oct 16, 2009.CrossRefGoogle Scholar
Knapp, C.A. & Contro, N. (2009). Family support services in pediatric palliative care. The American Journal of Hospice and Palliative Care, 26(6), 476–482. Epub ahead of print Oct 16.Google Scholar
Lähteenmäki, P.M., Sjöblom, J., Korhonen, T., et al. (2004). The siblings of childhood cancer patients need early support: A follow-up study over the first year. Archives of Disease in Childhood, 89(11), 1008–1013.Google Scholar
Lane, C. & Mason, J. (2014). Meeting the needs of siblings of children with life-limiting illnesses. Nursing Children and Young People, 26(3), 16–20.CrossRefGoogle ScholarPubMed
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
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
Lonetto, R. (1980). Children's conception of death. New York: Springer Science.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
Lynn, M.R. (1986). Determination and quantification of content validity. Nursing Research, 35(6), 382–385.CrossRefGoogle ScholarPubMed
Mayer, R., Ouellet, F., Saint-Jacques, M.-C., et al. , (eds.), (2000). Méthodes de recherche en intervention sociale [Research methods for psychosocial intervention] [in French]. Montréal: Gaëtan Morin Éditeur.Google Scholar
McNamara-Goodger, K. & Feudtner, C. (2012). History and epidemiology. In Oxford textbook of palliative care for children, 2nd ed. Golman, A. et al. (eds.), pp. 3–12. New York: Oxford University Press.CrossRefGoogle Scholar
Murray, J.S. (1999). Siblings of children with cancer: A review of the literature. Journal of Pediatric Oncology Nursing, 16(1), 25–34.Google Scholar
Nolbris, M.J. & Ahlstrom, B.H. (2014). Siblings of children with cancer: Their experiences of participating in a person-centered support intervention combining education, learning and reflection. Pre- and post-intervention interviews. European Journal of Oncology Nursing, 18(3), 254–260. Epub ahead of print Feb 6.CrossRefGoogle Scholar
Nolbris, M. & Hellström, A.L. (2005). Siblings' needs and issues when a brother or sister dies of cancer. Journal of Pediatric Oncology Nursing, 22(4), 227–233.Google Scholar
O'Brien, I., Duffy, A. & Nicholl, H. (2009). Impact of childhood chronic illnesses on siblings: A literature review. British Journal of Nursing, 18(22), 1358–1365.Google Scholar
Olivier-d'Avignon, M. (2006). Identification des besoins de la fratrie d'enfants en fin de vie [Identifying the needs of siblings of dying children] [in French]. Master's thesis. Québec: Université Laval.Google Scholar
Olivier-d'Avignon, M. (2013). Élaboration et validation d'un outil d'évaluation des besoins de la fratrie d'enfants atteints d'une maladie à issue potentiellement fatale [Development and validation of a need measurement for siblings of children with a life-threatening illness] [in French]. Doctoral dissertation. Québec: Université Laval.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 2: Psychometric validation of a measurement instrument. Palliative & Supportive Care, 1–12. Epub ahead of print May 27.Google Scholar
O'Shea, E.R., Shea, J., Robert, T., et al. (2012). The needs of siblings with cancer: A nursing perspective. Journal of Pediatric Oncology Nursing, 29(4), 221–231.Google 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. Epub ahead of print Aug 25, 2010.Google Scholar
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
Piaget, J. (1977). The development of thought: Equilibration of cognitive structures. New York: Viking Press.Google Scholar
Piaget, J. & Inhelder, B. (1966). La psychologie de l'enfant, 19ième édition [The psychology of the child, 19th ed.]. Paris: Presses Universitaires de France.Google Scholar
Polit, D.F., Beck, C.T. & Owen, S.V. (2007). Is the CVI an acceptable indicator of content validity? Appraisal and recommendations. Research in Nursing & Health, 30(4), 459–467.Google Scholar
Sidhu, R., Passmore, A. & Baker, D. (2005). An investigation into parent perceptions of the needs of siblings of children with cancer. Journal of Pediatric Oncology Nursing, 22(5), 276–287.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.CrossRefGoogle ScholarPubMed
Speece, M.W. & Brent, S.B. (1984). Children's understandings of death: A review of three components of a death concept. Child Development, 55(5), 1671–1686.CrossRefGoogle Scholar
Stallard, P., Mastroyannopoulou, K., Lewis, M., et al. (1997). The siblings of children with life-threatening conditions. Child and Adolescent Mental Health, 2(1), 26–33.Google Scholar
Statistics Canada (2015). Table 051-0002: Estimates of deaths, by sex and age group. Canada, provinces and territories, annual (persons). Available from http://www5.statcan.gc.ca/cansim/a26?lang=eng&id=510002.Google Scholar
Stillion, J.M. & Papadatou, D. (2002). Suffer the children: An examination of psychosocial issues in children and adolescents with terminal illness. American Behavioral Scientist, 14(2), 299–315.Google Scholar
Streiner, D.L. & Norman, G.R. (2008). Health measurement scale: A practical guide to their development, 4th ed. New York: Oxford University Press.Google Scholar
Together for Short Lives (2009). A guide to the development of children's palliative care services, 3rd ed. Bristol: Together for Short Lives. Available from http://www.togetherforshortlives.org.uk/assets/0001/1649/ACT_Guide_to_Developing_Services.pdf.Google Scholar
Vadeboncoeur, C.M., Splinter, W.M., Rattray, M., et al. (2010). A paediatric palliative programme in development: Trends in referral and location of death. Archives of Disease in Childhood, 95(9), 686–689. Epub ahead of print Jul 7, 2009.Google Scholar
von Essen, L. & Enskär, K.G.L. (2004). Important aspects of care and assistance for siblings of children treated for cancer: A parent and nurse perspective. Cancer Nursing, 26(3), 203–210.Google Scholar
Waltz, C.L., Strickland, O.L. & Lenz, E.R. (2005). Measurement in nursing and health research, 3rd ed. New York: Springer Science.Google Scholar
Waltz, C.W. & Bausell, R.B. (1981). Nursing research: Design, statistics and computer analysis. Philadelphia: F.A. Davis.Google Scholar
Widger, K., Davies, D., Drouin, D., et al. (2007). Pediatric patients receiving palliative care in Canada: Results of a multicenter review. Archives in Pediatric & Adolescent Medicine, 161(6), 597–602.Google Scholar
Williams, P.D. (1997). Siblings and paediatric chronic illness: A review of the literature. International Journal of Nursing Studies, 34(4), 312–323.CrossRefGoogle ScholarPubMed
Wolfe, J. & Siden, H. (2012). Research in 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
Wood, I. (2006). School. In Oxford textbook of palliative care for children. Goldman, A. et al. (eds.), pp. 128–142. New York: Oxford University Press.Google Scholar
Woodgate, R.L. (2006). Siblings' experiences with childhood cancer. Cancer Nursing, 29(5), 406–414.CrossRefGoogle ScholarPubMed
World Health Organization (WHO) (2010). WHO definition of palliative care and palliative care for children. Geneva: World Health Organization. Available from www.who.int/cancer/palliative/definition/.Google Scholar
Zeltzer, L.K., Dolgin, M.J., Sahler, O.J.Z., et al. (1996). Sibling adaptation to childhood cancer collaborative study: Health outcomes of siblings of children with cancer. Medical and Pediatric Oncology, 27(2), 98–107.3.0.CO;2-O>CrossRefGoogle ScholarPubMed