Trajectory of parental hope when a child has difficult-to-treat cancer: a prospective qualitative study

Authors

  • L. Granek,

    Corresponding author
    1. Department of Public Health, Ben Gurion University of the Negev, Be'er Sheva, Israel
    • Correspondence to: Department of Public Health, Ben Gurion University of the Negev, Be'er Sheva 84105, Israel. E-mail: Leeatg@gmail.com

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    • These authors contributed equally to the manuscript.

  • M. Barrera,

    1. Department of Psychology, Hospital for Sick Children, Toronto, ON, Canada
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    • These authors contributed equally to the manuscript.

  • J. Shaheed,

    1. Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, Toronto, ON, Canada
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  • D. Nicholas,

    1. Faculty of Social Work (Central and Northern Alberta Region), University of Calgary, Edmonton, AB, Canada
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  • L. Beaune,

    1. Research Coordinator Palliative Care Services, Hospital for Sick Children, Toronto, ON, Canada
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  • N. D'Agostino,

    1. Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, Toronto, ON, Canada
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  • E. Bouffet,

    1. Hematology/Oncology, Hospital for Sick Children and University of Toronto, Toronto, ON, Canada
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  • B. Antle

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    • Our esteemed colleague and friend Dr. Beverley Antle died during the early stages of data collection for this study in 2008. We want to acknowledge her contribution to this project and her efforts to understanding the concept of hope in the area of children and palliative care. Beverley has left a ‘legacy of hope’ within the profession of social work and indeed across disciplines through her innovative research with children with chronic health conditions, disabilities, and serious illness.


Abstract

Objective

This prospective and longitudinal study was designed to further our understanding of parental hope when a child is being treated for a malignancy resistant to treatment over three time points during the first year after diagnosis using a qualitative approach to inquiry.

Methods

We prospectively recruited parents of pediatric cancer patients with a poor prognosis who were treated in the Hematology/Oncology Program at a large children's hospital for this longitudinal grounded theory study. Parents were interviewed at three time points: within 3 months of the initial diagnosis, at 6 months, and at 9 months. Data collection and analysis took place concurrently using line-by-line coding. Constant comparison was used to examine relationships within and across codes and categories.

Results

Two overarching categories defining hope as a positive inner source were found across time, but their frequency varied depending on how well the child was doing and disease progression: future-oriented hope and present-oriented hope. Under future-oriented hope, we identified the following: hope for a cure and treatment success, hope for the child's future, hope for a miracle, and hope for more quality time with child. Under present-oriented hope, we identified hope for day-to-day/moment-to-moment, hope for no pain and suffering, and hope for no complications.

Conclusions

For parents of children with a diagnosis of cancer with a poor prognosis, hope is an internal resource that can be present and future focused. These views fluctuated over time in response to changes in the child's well-being and disease progression. Copyright © 2013 John Wiley & Sons, Ltd.

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