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What young people need when a family member dies of cancer

Abstract

Purpose

This study uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress.

Methods

In total, 278 bereaved offspring and 38 bereaved siblings (12–25 years) completed the 58-item Bereaved Cancer Needs Inventory (BCNI) and the Kessler psychological distress scale (K10).

Results

Bereaved offspring reported 27 unmet needs on average (SD = 16.87, range: 0–58); 94% indicated at least one unmet need, with 80% indicating 10 or more needs. Bereaved siblings reported 23 unmet needs on average (SD = 17.30, range: 0–57); 97% indicated at least one unmet need, with 68% indicating 10 or more needs. For both bereaved offspring and siblings, the needs for “support from other young people” and “time out and recreation” were most frequently reported as unmet. Approximately half of all participants reported high to very high levels of psychological distress. There was a significant positive relationship between the number of unmet needs and the psychological distress score on the K10 for both groups.

Conclusions

Bereaved offspring and bereaved siblings report unmet psychosocial needs across many domains, which are associated with their levels of psychological distress. Findings suggest the BCNI may be used by healthcare professionals to identify unmet needs and direct clients to the appropriate services, resources, or support; with the intent to reduce their risk of mental illness and psychological distress.

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Notes

  1. The Australian Institute of Health and Welfare (2011) definition of adolescents and young adults includes those aged 12–24 years. Because CanTeen offers services up to 25 years of age, the AYA age group ranged from 12 to 25 years.

  2. CanTeen provides support to AYAs who have cancer, have a parent or sibling with cancer, or who have had a parent (bereaved offspring) or sibling (bereaved sibling) die due to cancer.

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Acknowledgements

The authors would like to acknowledge Kimberley Allison’s assistance with manuscript preparation, as well as the contributions of all the young people who participated in this study.

Funding

This project was not externally funded.

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Correspondence to Fiona E. J. McDonald.

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The authors declare that they have no conflict of interest.

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McDonald, F.E.J., Patterson, P. & Tindle, R. What young people need when a family member dies of cancer. Support Care Cancer 28, 1631–1638 (2020). https://doi.org/10.1007/s00520-019-04973-0

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  • DOI: https://doi.org/10.1007/s00520-019-04973-0

Keywords

  • Unmet needs
  • Cancer
  • Bereavement
  • Offspring
  • Siblings
  • Adolescents and young adults