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Parents’ perspectives of life challenges experienced by long-term paediatric brain tumour survivors: work and finances, daily and social functioning, and legal difficulties

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Abstract

Background

Paediatric brain tumour survivors (PBTS) are at high risk for medical, neurocognitive and psychological sequelea during adulthood. Details illustrating the types and breadth of these chronic sequelae are essential to fully comprehend their impact on daily living.

Purpose

This study describes Canadian parents of PBTS perspectives of life challenges experienced by their now adult son or daughter related to work and finances, daily and social functioning, and legal difficulties.

Method

Parents of PBTS completed an anonymous online exploratory survey.

Findings

Forty-six of 60 invited parents completed the survey. Parents reported that PBTS experienced difficulty gaining or sustaining employment (65 %) because of their health and/or a disability and employers reticence to hire and adequately support PBTS. Independent living was considered unaffordable for PBTS who received a disability allowance (82 %) and those who were employed (50 %). Thirty percent indicated their family experienced hardship because of PBTS medical expenses, which were usually paid for out of pocket (76 %). Although the majority of PBTS were independent with daily tasks and social functioning, a subgroup required continuous support. Forty percent of employed PBTS received limited assistance to accommodate their special needs. Parents indicated their son or daughter had been the victim of theft, fraud or assault (37 %), and commonly considered them vulnerable, in need of protection and feared for their future safety.

Conclusion

Research that further illuminates the hardships facing PBTS and informs the development of support and resources to address PBTS vulnerabilities is warranted.

Implications for Cancer Survivors

PBTS are at risk for unemployment, financial challenges and legal difficulties, which appear to be poorly addressed by health and social programs.

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Acknowledgments

We thank all the parents who took part in this study and shared their experiences for the benefit of others. Dr. Fuchsia Howard holds a Michael Smith Foundation for Health Research, Post Doctoral Research Trainee Award.

Conflict of interest

We have no conflict of interest.

Author information

Authors and Affiliations

  1. School of Population and Public Health, Faculty of Medicine, University of British Columbia, 2206 East Mall, Vancouver, BC, V6T 1Z3, Canada

    A. Fuchsia Howard

  2. Department of Radiation Oncology, BC Cancer Agency Vancouver Centre, Vancouver, Canada

    A. Fuchsia Howard, Haroon Hasan & Karen Goddard

  3. Faculty of Law, University of British Columbia, Vancouver, Canada

    Mary Anne Bobinski

  4. Parent and Community Member, Vancouver, Canada

    Wendy Nurcombe

  5. Department of Radiation Oncology, BC Cancer Agency Centre for the North, Prince George, Canada

    Robert Olson

  6. Faculty of Surgery, University of British Columbia, Vancouver, Canada

    Robert Olson & Karen Goddard

  7. Patient and Family Counseling, BC Cancer Agency Vancouver Centre, Vancouver, Canada

    Maureen Parkinson

Authors
  1. A. Fuchsia Howard
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  2. Haroon Hasan
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  3. Mary Anne Bobinski
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  4. Wendy Nurcombe
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  5. Robert Olson
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  6. Maureen Parkinson
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  7. Karen Goddard
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Corresponding author

Correspondence to A. Fuchsia Howard.

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Howard, A.F., Hasan, H., Bobinski, M.A. et al. Parents’ perspectives of life challenges experienced by long-term paediatric brain tumour survivors: work and finances, daily and social functioning, and legal difficulties. J Cancer Surviv 8, 372–383 (2014). https://doi.org/10.1007/s11764-013-0331-5

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  • DOI: https://doi.org/10.1007/s11764-013-0331-5

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