This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12–25 years) who have experienced the death of a parent or sibling to cancer.
In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experienced the death of a parent (N = 297) or sibling (N = 38) from cancer took part in this study. Participants completed the BCNI, the Kessler-10 psychological distress scale (K10), and several items assessing the acceptability of the BCNI.
Exploratory factor analysis indicated that a seven-factor structure best fit the BCNI, accounting for 56.65% of the variance in unmet psychosocial needs of cancer-bereaved AYAs. The measure had good psychometric properties, high levels of internal consistency for all domains, and correlated strongly with the K10 (r = .59, p < .001). Item response theory analysis demonstrated that the response scale was appropriate, with strong discrimination indices. Analyses also indicated the potential to reduce the BCNI from 58 items to a 37-item short-form, although this will require further validation.
The BCNI is the first psychometrically validated instrument to identify the unmet psychosocial needs of bereaved AYAs who have experienced the death of a parent or sibling to cancer. The instrument can be used in research and health care settings to identify the unmet needs of young people bereaved by cancer and provide targeted support to reduce psychological distress.
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The Australian Institute of Health and Welfare (2011) define AYAs to include those aged 12–24 years. Because CanTeen offers services up to 25 years of age, the AYA age group ranged from 12 to 25.
CanTeen is the Australian organisation for young people living with cancer.
The number of days since a parent or sibling death did not correlate significantly with the number of unmet psychosocial needs, r (309) = .05, p = .416.
Values of 0.50–0.70 are considered mediocre, 0.70–0.80 is considered good, 0.80–0.90 is considered great, and values greater than 0.90 are considered superb.
Floor or ceiling effects were only of concern if more than 15% of respondents attained the lowest or highest score on the BCNI (Terwee et al. 2007). In our sample, three participants achieved the lowest score of 58 and only 1 participant achieved the highest score of 232, accounting for 1.19% of the sample.
Ayers TS, Wolchik SA, Sandler IN, Twohey JL, Weyer JL, Padgett-Jones S, Weiss L, Cole E, Kriege G (2014) The Family Bereavement Program: description of a theory-based prevention program for parentally-bereaved children and adolescents. OMEGA - J Death Dying 68:293–314. https://doi.org/10.2190/OM.68.4.a
Currier JM, Neimeyer RA, Berman JS (2008) The effectiveness of psychotherapeutic interventions for bereaved persons: a comprehensive quantitative review. Psychol Bull 134:648–661. https://doi.org/10.1037/0033-2909.134.5.648
Curtis K, Newman T (2001) Do community-based support services benefit bereaved children? A review of empirical evidence. Child Care Health Dev 27:487–495. https://doi.org/10.1046/j.1365-2214.2001.00232.x
Rosner R, Kruse J, Hagl M (2010) A meta-analysis of interventions for bereaved children and adolescents. Death Stud 34:99–136. https://doi.org/10.1080/07481180903492422
McDonald FEJ, Patterson P, Tindle R (2019). What young people need when a family member dies of cancer. Support Care Cancer. https://doi.org/10.1007/s00520-019-04973-0
Melhem NM, Porta G, Shamseddeen W, Payne MW, Brent DA (2011) Grief in children and adolescents bereaved by sudden parental death. Arch Gen Psychiatry 68:911–919. https://doi.org/10.1001/archgenpsychiatry.2011.101
Patterson P, Rangganadhan A (2010) Losing a parent to cancer: a preliminary investigation into the needs of adolescents and young adults. Palliat Support Care 8:255–265. https://doi.org/10.1017/S1478951510000052
Stroebe M, Schut H, Stroebe W (2007) Health outcomes of bereavement. Lancet 370. https://doi.org/10.1016/S0140-6736(07)61816-9
Rosenberg AR, Postier A, Osenga K, Kreicbergs U, Neville B, Dussel V, Wolfe J (2015) Long-term psychosocial outcomes among bereaved siblings of children with cancer. J Pain Symptom Manage 49:55–65. https://doi.org/10.1016/j.jpainsymman.2014.05.006
Sveen J, Eilegård A, Steineck G, Kreicbergs U (2014) They still grieve- a nationwide follow-up of young adults 2-9 years after losing a sibling to cancer. Psycho-Oncol 23:658–664. https://doi.org/10.1002/pon.3463
Ing V, Patterson P, Szabo M, Allison KR (2019) Interventions for adolescents and young adults bereaved by familial cancer: a systematic literature review. BMJ Support Palliat Care. https://doi.org/10.1136/bmjspcare-2019-001959
Walczak A, McDonald FEJ, Patterson P, Dobinson K, Allison K (2017) How does parental cancer affect adolescent and young adult offspring? A systematic review. Int J Nurs Stud 77:54–80. https://doi.org/10.1016/j.ijnurstu.2017.08.017
Varathakeyan A, McDonald FEJ, Patterson P, Nicholson Perry K, Allison KR (2017) Accessing support before or after a parent dies from cancer and young people’s current wellbeing. Support Care Cancer 26:797–805. https://doi.org/10.1007/s00520-017-3891-5
Patterson P, McDonald FEJ, Butow P, White KJ, Costa DS, Pearce A, Bell ML (2013) Psychometric evaluation of the Offspring Cancer Needs Instrument (OCNI): an instrument to assess the psychosocial unmet needs of young people who have a parent with cancer. Support Care Cancer 21:1927–1938. https://doi.org/10.1007/s00520-013-1749-z
McDonald FEJ, Patterson P, White KJ, Butow PN, Costa DS, Kerridge I (2016) Correlates of unmet needs and psychological distress in adolescents and young adults who have a parent diagnosed with cancer. Psycho-Oncol 25:447–454. https://doi.org/10.1002/pon.3942
Patterson P, McDonald FEJ, White KJ, Butow PN, Walczak A (2017) Levels of unmet needs and distress in AYAs impacted by familial cancer. Psycho-Oncol 26:1285–1292. https://doi.org/10.1002/pon.4421
McDonald FEJ, Patterson P, White KJ, Butow P, Bell ML (2014) Predictors of unmet needs and psychological distress in adolescent and young adult siblings of people diagnosed with cancer. Psycho-Oncol 24:333–340. https://doi.org/10.1002/pon.3653
Patterson P, McDonald FEJ, White KJ, Butow PN, Walczak A (2017) Levels of unmet needs and distress amongst adolescents and young adults (AYAs) impacted by familial cancer. Psycho-Oncol 26:1285–1292. https://doi.org/10.1002/pon.4421
McDowell ME, Occhipinti S, Ferguson M, Dunn J, Chambers SK (2010) Predictors of change in unmet supportive care needs in cancer. Psycho-Oncol 19:508–516. https://doi.org/10.1002/pon.1604
Kessler RC, Andrews G, Colpe LJ, Hiripi E, Mroczek DK, Normand SLT, Walters EE, Zaslavsky AM (2002) Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychol Med 32:959–976. https://doi.org/10.1017/S0033291702006074
Andrews G, Slade T (2001) Interpreting scores on the Kessler Psychological Distress Scale (K10). Aust N Z J Public Health 25:494–497. https://doi.org/10.1111/j.1467-842X.2001.tb00310.x
Hutcheson G, Sofroniou N (1999) The multivariate social scientist: introductory statistics using generalized linear models. Sage Publications, Thousand Oaks CA
Ferguson E, Cox T (1993) Exploratory factor analysis: a user’s guide. Int J Select Assess 1:84–94. https://doi.org/10.1111/j.1468-2389.1993.tb00092.x
Velicer WF (1976) Determining the number of components from the matrix of partial correlations. Psychometrika 4:321–327. https://doi.org/10.1007/BF02293557
Tabachnick BG, Fidell LS (2001) Using multivariate statistics. Pearson Education Company, Essex UK
Hair JF, Black WC, Babin BJ, Anderson RE (2010) Multivariate data analysis: a global perspective, 7th edn. Pearson Education, Upper Saddle River NJ
Field A (2013) Discovering statistics using IBM SPSS Statistics. SAGE Publications, London UK
Samejima F (1997) Graded response model. In: van der Linden WJ, Hambleton RK (eds) Handbook of modern item response theory. Springer, New York NY, pp 85–100
Baker FB (2001) The basics of item response theory, 2nd edn. ERIC Clearinghouse on Assessment and Evaluation, College Park MD
Chalmers RP (2012) mirt: a multidimensional item response theory package for the R environment. J Stat Softw 48:1–29. https://doi.org/10.18637/jss.v048.i06
Kang T, Chen TT (2007) Performance of the generalized S-X2 item-fit index for polytomous IRT models. J Educ Meas 45:391–406. https://doi.org/10.1111/j.1745-3984.2008.00071.x
Orlando M, Thissen D (2000) Likelihood-based item fit indices for dichotomous item response theory models. Appl Psychol Meas 24:50–64. https://doi.org/10.1177/01466216000241003
Hochberg Y (1988) A sharper Bonferroni procedure for multiple tests of significance. Biometrika 75:800–802. https://doi.org/10.1093/biomet/75.4.800
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). Psycho - Oncol 16:796–804. https://doi.org/10.1002/pon.1137
Flesch R (1948) A new readability yardstick. J Appl Psychol 32:221–233. https://doi.org/10.1037/h0057532
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 19:1165–1174. https://doi.org/10.1007/s00520-010-0933-7
McDonald FEJ, Patterson P, White KJ, Butow P, Bell ML (2015) Predictors of unmet needs and psychological distress in adolescent and young adult siblings of people diagnosed with cancer. Psycho-Oncol 24:333–340. https://doi.org/10.1002/pon.3653
Patterson P, McDonald FEJ, Butow P, White KJ, Costa DSJ, Millar B, Bell ML, Wakefield CE, Cohn R (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. Support Care Cancer 22:653–665. https://doi.org/10.1007/s00520-013-2020-3
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 Ped Oncol Nurs 28:16–26. https://doi.org/10.1177/1043454210377174
The CanTeen internal ethics committee approved the study (Approval No. CEC15.002).
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Patterson, P., McDonald, F.E.J., Costa, D.S.J. et al. Initial validation of a needs instrument for young people bereaved by familial cancer. Support Care Cancer 28, 3637–3648 (2020). https://doi.org/10.1007/s00520-019-05104-5
- Adolescent and young adult
- Familial cancer
- Unmet needs