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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)

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Abstract

Purpose

This study aimed to identify the psychosocial needs of young people (12–24 years) who have a parent with cancer and to assess whether these needs are being met. This paper also presented the initial steps in the development of a need-based measure—the Offspring Cancer Needs Instrument (OCNI).

Methods

Study 1 used qualitative methods to identify the needs of the target population, including a focus group (n = 6), telephone interviews (n = 8) and staff survey (n = 26). In study 2, a quantitative survey design was employed where 116 young people completed the 67-item OCNI and either the total difficulties score of the Strengths and Difficulties Questionnaire (SDQ-TD; 12–17-year-old) or Depression, Anxiety, Stress Scale—21 (DASS-21) (18–24-year-old). Tests of reliability (Cronbach’s alpha) were used to assess the properties of each domain, where a level of 0.70 was deemed satisfactory as per scale guidelines. Construct validity was assessed by testing the proposed relationship between unmet needs and functioning where a coefficient of 0.03 was deemed satisfactory.

Results

The qualitative data yielded eight need domains (information, peer support, feelings, carer support, family, school/work environment, access to support and respite and recreation), which were subsequently used to inform the item content of the OCNI. The survey data revealed that 90% of young people endorsed 10 or more needs, and nearly a quarter indicated >50 needs. It was also found that these needs often go unmet: 87% of the participants had at least one unmet need, 43% reported >10 and just under a quarter had >20 unmet needs. The two highest reported unmet needs related to understanding from friends and assistance with concentrating and staying on task. The OCNI exhibited face and content validity and acceptable reliability for most of the domains. Cronbach’s alpha ranged from 0.64 (access to support) to 0.92 (information). Preliminary construct validity was assessed through the hypothesised positive relationship between unmet needs and the SDQ-TD for 12–17-year-old participants (r = 0.33, p<0.001) and the DASS-21 for 18–24-year-old participants (depression, r = 0.77, p < 0.001; anxiety, r = 0.66, p < 0.001; stress: r = 0.56, p < 0.05).

Conclusion

Young people (aged 12–24 years) who have a parent with cancer report a complex array of needs, many of which go unmet. The preliminary findings reported may be used to inform service providers in the development and evaluation of need-based programs to redress these unmet needs and thus ameliorate the effects of parental cancer. Services addressing information and school-based interventions are particularly pertinent given these current results.

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Notes

  1. Diagnosed parent denotes the parent/guardian who has been diagnosed with cancer, regardless of treatment status.

References

  1. AIHW (Australian Institute of Health and Welfare) AACR (Australasian Association of Cancer Registries) (2007) Cancer in Australia: an overview, 2006. Cancer series no. 37, cat no. CAN 32. AIHW, Canberra

  2. Watson M, St James-Roberts I, Ashle S, Tilney C, Brougham L, Baldus C et al (2006) Factors associated with emotional and behavioural problems among school age children of breast cancer patients. Br J Cancer 94:43–50

    Article  PubMed  CAS  Google Scholar 

  3. Worsham NL, Crawford EK (2005) Parental illness and adolescent development. Prev Res 12:3–6

    Google Scholar 

  4. World Health Organisation. http://www.who.int. Cited 19 April 2010

  5. Osborn T (2007) The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psycho-Oncol 16:101–126

    Article  Google Scholar 

  6. Heiney SP, Bryant LH, Walker S, Parrish RS, Provenzano FJ, Kelly KE (1997) Impact of parental anxiety on child emotional adjustment when a parent has cancer. Oncol Nurs Forum 24:655–661

    PubMed  CAS  Google Scholar 

  7. Adams-Greenly M, Beldoch N, Moynihan R (1986) Helping adolescents whose parents have cancer. Sem Oncol Nurs 2:133–138

    Article  CAS  Google Scholar 

  8. Compas BE, Worsham NL, Ey S, Howell DC (1996) When mom or dad has cancer: II. Coping, cognitive appraisal, and psychological distress in children of cancer patients. Health Psychol 15:167–175

    Article  PubMed  CAS  Google Scholar 

  9. Vess JD, Moreland JR, Schwebel AI (1985) An empirical assessment of the effects of cancer on family role functioning. J Psychosoc Oncol 3:1–16

    Google Scholar 

  10. Visser A, Huizinga GA, van der Graaf WTA, Hoekstra HJ, Hoekstra-Weebers JEHM (2004) The impact of parental cancer on children and the family: a review of the literature. Cancer Treat Rev 30:683–694

    Article  PubMed  Google Scholar 

  11. Kristjanson LJ, Chalmers KI, Woodgate R (2004) Information and support needs of adolescent children of women with breast cancer. Oncol Nurs Forum 31:111–119

    Article  PubMed  Google Scholar 

  12. Chalmers KI, Kristjanson LJ, Woodgate R, Taylor-Brown J, Nelson F, Ramserran S, Dudgeon D (2000) Perceptions of the role of the school in providing information and support to adolescent children of women with breast cancer. J Adv Nurs 31:1430–1438

    Article  PubMed  CAS  Google Scholar 

  13. Forrest G, Plumb C, Ziebland S, Stein A (2006) Breast cancer in the family—children’s perceptions of their mother’s cancer and its initial treatment: qualitative study. Br Med J 332:998–1003

    Article  Google Scholar 

  14. Rees CE, Bath PA (2000) The psychometric properties of the Miller Behavioural Style Scale with adult daughters of women with early breast cancer: a literature review and empirical study. J Adv Nurs 32:366–374

    Article  PubMed  CAS  Google Scholar 

  15. Grabiek BR, Brender CM, Puskar KR (2006) The impact of parental cancer on the adolescent: an analysis of the literature. Psycho-Oncol 16:127–137

    Google Scholar 

  16. Houts PS, Yasko JM, Kahn B, Schelzel GW, Marconi KM (1986) Unmet psychological, social, and economical needs of persons with cancer in Pennsylvania. Cancer 58:2355–2361

    Article  PubMed  CAS  Google Scholar 

  17. Asadi-Lari M, Tamburini M, Gray D (2004) Patients’ needs, satisfaction, and health related quality of life: towards a comprehensive model. Health Qual Life Outcomes 2:1–15

    Article  Google Scholar 

  18. Farmer JE, Marien WE, Clark MJ, Sherman A, Selva TJ (2004) Primary care supports for children with chronic health conditions: Identifying and predicting unmet family needs. J Pediatr Psychol 29:355–367

    Article  PubMed  Google Scholar 

  19. Patterson P, Millar B, Visser A (2010) 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 of Pediatr Oncol Nurs (in press)

  20. Millar B, Patterson P, Desille N (2010) Emerging adulthood and cancer: How unmet needs vary with time-since-treatment. Palliat Support Care 23:1–8. doi:10.1017/S1478951509990903

    Google Scholar 

  21. McLoone J, Wakefield CE, Lenthen K, Butow P, Cohn RJ (2009) Finishing cancer treatment: the positives and negatives for adolescents and their families. Asia-Pac J Clin Oncol 5(s2):A165

    Google Scholar 

  22. Nakash RA, Hutton JL, Jorstad-Stein EC, Gates S, Lamb SE (2006) Maximising response to postal questionnaires—a systematic review of randomised trials in health research. BMC Med Res Meth 6:5

    Article  Google Scholar 

  23. Junghans C, Feder G, Hemingway H et al (2005) Recruiting patients to medical research: double blind randomised trial of “opt-in” versus “opt-out” strategies. BMJ 331:940

    Article  PubMed  Google Scholar 

  24. Coast J, Flynn TN, Salisbury C, Louviere J, Peters TJ (2006) Maximising responses to discrete choice experiments: a randomised trail. Appl Health Econ Health Pol 5:249–260

    Article  Google Scholar 

  25. Flesch R (1948) A new readability yardstick. J Appl Psychol 32:221–233

    Article  PubMed  CAS  Google Scholar 

  26. Goodman R (1997) The Strengths and Difficulties Questionnaire: a research note. J Child Psychol Psychiatry 38:581–586

    Article  PubMed  CAS  Google Scholar 

  27. Goodman R (2001) Psychometric properties of the strengths and difficulties questionnaire. J Am Acad Child Adolesc Psychiatry 40:1337–1345

    Article  PubMed  CAS  Google Scholar 

  28. Goodman R, Meltzer H, Bailey V (1998) The strengths and difficulties questionnaire: a pilot study on the validity of the self-report version. Eur Child Adolesc Psychiatry 7:125–130

    Article  PubMed  CAS  Google Scholar 

  29. Lovibond SH, Lovibond PF (1995) Manual for the Depression Anxiety Stress Scales, 2nd edn. Psychology Foundation, Sydney

    Google Scholar 

  30. Antony MM, Bieling PJ, Cox BJ, Enns MW, Swinson RP (1998) Psychometric properties of the 42-item and 21-item versions of the Depression, Anxiety, Stress Scales (DASS) in clinical groups and a community sample. Psychol Assess 10:176–181

    Article  Google Scholar 

  31. Brown TA, Korotitsch W, Chorpita BF, Barlow DH (1997) Psychometric properties of the Depression, Anxiety, Stress Scales (DASS) in clinical samples. Behav Res Ther 35:79–89

    Article  PubMed  CAS  Google Scholar 

  32. Kline P (1999) The handbook of psychological testing, 2nd edn. Routledge, London

    Google Scholar 

  33. Hills AM (2008) Foolproof guide to statistics, 3rd edn. Pearson Education Australia, Frenchs Forest

    Google Scholar 

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Acknowledgements

The authors would like to thank Professor Phyllis Butow from the University of Sydney and Dr. Jim Beattie and Mr. Brett Millar, who are part of the CanTeen research team, for their comments and edit of the paper in readiness for submission. The authors also thank the participants for their willingness to share their experiences.

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Authors and Affiliations

  1. CanTeen: The Australian Organisation for Young People Living with Cancer, Sydney, NSW, Australia

    Pandora Patterson & Angela Pearce

  2. University of Western Sydney, Sydney, NSW, Australia

    Emma Slawitschka

Authors
  1. Pandora Patterson
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  2. Angela Pearce
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  3. Emma Slawitschka
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Correspondence to Pandora Patterson.

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Patterson, P., Pearce, A. & Slawitschka, E. 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 (2011). https://doi.org/10.1007/s00520-010-0933-7

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