Abstract
Purpose
The current study sought to establish the psychometric properties of the revised Sibling Cancer Needs Instrument (SCNI) when completed by young people who have a brother or sister with cancer.
Methods
The participants were 106 young people aged between 12 and 24 who had a living brother or sister diagnosed with any type or stage of cancer in the last 5 years. They were recruited from multiple settings. The initial step in determining the dimensional structure of the questionnaire was exploratory factor analysis and further assessment followed using Rasch analysis. Construct validity and test–retest reliability (n = 17) were also assessed.
Results
The final SCNI has 45 items and seven domains: information; practical assistance; “time out” and recreation; feelings; support (friends and other young people); understanding from my family; and sibling relationship. There was a reasonable spread of responses across the scale for every item. Rasch analysis results suggested that overall, respondents used the scale consistently. Support for construct validity was provided by the correlations between psychological distress and the SCNI domains. The internal consistency was good to excellent; Cronbach's alphas ranged from 0.78 to 0.94. The test–retest reliability of the overall measure is 0.88.
Conclusions
The SCNI is the first measure of psychosocial unmet needs which has been developed for young people who have a brother or sister with cancer. The sound psychometric properties allow the instrument to be used with confidence. The measure will provide a substantial clinical benefit in highlighting the unmet needs of this population to assist with the prioritisation of targeted supportive care services and evaluating the impact of interventions targeted at siblings.
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Notes
In the Australian context, AYAs have traditionally included young people aged 15–25 years [1]. However, as the organization developing the SCNI has members aged 12–24 years, this age group is used throughout this study.
Item and person fit refer to items or respondents whose response patterns deviate from the expectations of the Rasch model. See Pallant and Tennant [16] for a concise summary of these statistics.
There were no differences between people who were members of CanTeen and people who were not with regard to total K10 scores (t 96 = −1.67, p = 0.10) or total unmet needs scores (t 95 = −1.21, p = 0.23).
References
CanTeen (2012) Youth Cancer Services. http://www.youthcancer.com.au/youth-cancer-services.aspx. Accessed 4 Mar 2013
Alderfer MA, Long KA, Lown EA, Marsland AL, Ostrowski NL, Hock JM, Ewing LJ (2010) Psychosocial adjustment of siblings of children with cancer: a systematic review. Psycho-Oncology 19(8):789–805
Clinical Oncological Society of Australia (2011) Psychosocial management of AYAs diagnosed with cancer: guidance for health professionals. Clinical Oncological Society of Australia, Sydney
Long KA, Marsland AL (2011) Family adjustment to childhood cancer: a systematic review. Clin Child Fam Psychol Rev 14:57–88
Patterson P, Millar B, Visser A (2008) The needs of young people who have a sibling with cancer: report on the CanTeen National Member Survey for Sibling Members. CanTeen Australia, Sydney
Ballard KL (2004) Meeting the needs of siblings of children with cancer. Pediatr Nurs 30(5):394–401
Franklin M, Patterson P, Ross-Buckton A (2012) Adolescent and young adult siblings of cancer patients in the Australian health context: an exploration of health providers' perceptions. Symposium title: What can we learn from Australian and United Kingdom (UK) adolescent and young adult (AYA) cancer psychological research and practice: a CanTeen and Teenage Cancer Trust Symposium. In: International Psycho-Oncology Society 14th World Congress, Brisbane, Australia
Spinetta JJ, Jankovic M, Eden T, Green D, Martins AG, Wandzura C, Wilbur J, Masera G (1999) Guidelines for assistance to siblings of children with cancer: report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Med Pediatr Oncol 33:395–398
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). J Pediatr Oncol Nurs 28(1):16–26
Kazak AE, Alderfer MA, Barakat LP, Streisand R, Simms S, Rourke MT, Gallagher P, Cnaan A (2004) Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: a randomized clinical trial. J Fam Psychol 18(3):493–504
Houtzager BA, Grootenhuis MA, Caron HN, Last BF (2005) Sibling self-report, parental proxies, and quality of life: the importance of multiple informants for siblings of a critically ill child. Pediat Hematol Oncol 22(1):25–40
Wang R-H, Martinson IM (1996) Behavioral responses of healthy Chinese siblings to the stress of childhood cancer in the family: a longitudinal study. J Pediatr Nurs 11(6):383–391
Kessler RC, Barker PR, Colpe LJ, Epstein JF, Gfroerer JC, Hiripi E, Howes MJ, Normand SLT, Manderscheid RW, Walters EE, Zaslavsky AM (2003) Screening for serious mental illness in the general population. Arch Gen Psychiatry 60(2):184–189. doi:10.1001/archpsyc.60.2.184
Australian Institute of Health and Welfare (2011) Young Australians: their health and wellbeing 2011. AIHW, Canberra
Tabachnick BG, Fidell LS (2001) Using multivariate statistics, 4th edn. Pearson, Boston
Horn J (1965) A rationale and test for the number of factors in factor analysis. Psychometrika 30(2):179–185
Rasch G (1960) Probabilistic models for some intelligence and attainment tests. University of Chicago Press, Chicago
Andrich D, Lyne A, Sheridan B, Luo G (2003) RUMM 2020. RUMM Laboratory, Perth
Pallant JF, Tennant A (2007) An introduction to the Rasch measurement model: an example using the Hospital Anxiety and Depression Scale (HADS). Br J Clin Psychol 46:1–18. doi:10.1348/014466506x96931
George D, Mallery P (2003) SPSS for Windows step by step: a simple guide and reference. 11.0 update, 4th edn. Alllyn & Bacon, Boston
Neal AJ, Hoskin PJ (2009) Clinical oncology: basic principles and practice, 4th edn. Hodder Arnold, London
Nunnally J, Bernstein I (1994) Psychometric theory, 3rd edn. McGraw-Hill, New York
Hodgkinson K, Butow P, Hobbs KM, Hunt GE, Lo SK, Wain G (2007) Assessing unmet supportive needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors' Partners Unmet Needs measure (CaSPUN). Psychooncology 16:805–813. doi:10.1002/pon.1138
Cohen J (1988) Statistical power analysis for the behavioral sciences, 2nd edn. Lawrence Erlbaum, New Jersey
McDonald FEJ, Patterson P, White KJ, Butow P, Bell ML (2013) Predictors of unmet needs and psychological distress in adolescent and young adult siblings of people diagnosed with cancer. (in preparation)
Clinton-McHarg T, Carey M, Sanson-Fisher R, D'este C, Shakeshaft A (2012) Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire—Young People (CNQ-YP). Health Qual Life Outcome 10:13. doi:10.1186/1477-7525-10-13
Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Lo SK, Wain G (2007) The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure). Psychooncology 16:796–804
Patterson P, Pearce A, Slawitschka E (2011) The initial development of an instrument to assess the psychosocial needs and unmet needs of young people who have a parent with cancer: piloting the Offspring Cancer Needs Instrument (OCNI). Support Care Cancer 19(8):1165–1174. doi:10.1007/s00520-010-0933-7
Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Cancer 88(1):226–237
Australian Institute of Health and Welfare (2011) Cancer in adolescents and young adults in Australia 2011. AIHW, Canberra
Acknowledgments
The authors wish to thank the young people who shared their experiences with us in the course of this research. We are also extremely grateful to the reviewers for the thoroughness of their comments and their enthusiasm for this piece of research. Our article has improved much in light of their suggestions.
Conflict of interest
None of the authors have any conflict of interest. The corresponding author has full control of all primary data and agrees to allow the journal to review the data if requested.
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Patterson, P., McDonald, F.E.J., Butow, P. et al. 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. Support Care Cancer 22, 653–665 (2014). https://doi.org/10.1007/s00520-013-2020-3
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DOI: https://doi.org/10.1007/s00520-013-2020-3