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What do partners of patients with ovarian cancer need from the healthcare system? An examination of caregiving experiences in the healthcare setting and reported distress

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Abstract

Purpose

Ovarian cancer is typically characterized by late-stage diagnoses, frequent recurrences, and treatment changes. Ovarian cancer caregivers (OCC) are thus heavily involved with cancer care and often are highly distressed.

Methods

We explored the relationship with OCC distress and caregiving experiences within the healthcare system and with the healthcare providers (HCP), using a cross-sectional questionnaire study. OCC provided sociodemographic and patient medical information, and completed measures of consequences of caregiving and needs from HCP, and of depression and anxiety. We recruited participants through advertisements and two cancer centers.

Results

N = 82 OCC provided complete questionnaires. Participants on average were 57.2 years old, English-speaking white men, and were partnered for 28.5 years. On average, patients were diagnosed at stage III, and treated with surgery and chemotherapy. Eight percent met clinical cut-offs for depression (23.2% in sub-clinical range), and 23.2% met clinical cut-offs for anxiety (20.7% in sub-clinical range). Depression and anxiety were significantly correlated with lacking time for social relationships, higher workload, lacking information, and needing more help from HCP. Only depression was correlated with problematic quality of information from HCP.

Conclusions

OCC distress is related to their caregiving roles within the cancer care system, and how HCP support them in their responsibilities, which may contribute to a lack of time to access their supports. Perceived involvement by the HCP has an important influence on OCC distress. Higher demands of caregiving and insufficient support from the cancer care system may relate to increased distress. Our study supports the need for better integration of caregiver supports from within the healthcare system.

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Acknowledgments

We thank the following people and teams for their assistance in promoting and recruitment for our study: Ovarian Cancer Canada, Anne Rydall, Ekaterina An, Simone Zofia LaFlamme, Rebecca Neiman, Dr. John Robinson and the Sunflower Group, Kathleen Robb and the Ovation Circle support group, Dr. Sarah Ferguson and the Gynecology Oncology surgical team at the Princess Margaret Cancer Centre, Janet Giroux, and Dr. Josee-Lyne Ethier and the Gynecological Oncology clinic at the Cancer Centre of Southeastern Ontario.

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Authors and Affiliations

  1. School of Psychology, University of Ottawa, 136 Jean Jacques Lussier, Vanier Hall 4016, Ottawa, ON, K1N 6N5, Canada

    Danielle Petricone-Westwood, Elisa Stragapede & Sophie Lebel

  2. Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 610 University Ave, Room 16747, Toronto, ON, M5G 2M9, Canada

    Sarah Hales

  3. School of Nursing, Faculty of Health Sciences, Queen’s University, Cataraqui Building, 92 Barrie Street, Kingston, ON, K7L 3N6, Canada

    Jacqueline Galica

Authors
  1. Danielle Petricone-Westwood
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  2. Sarah Hales
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  3. Jacqueline Galica
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  4. Elisa Stragapede
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  5. Sophie Lebel
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Contributions

Danielle Petricone-Westwood, Dr. Sophie Lebel, Dr. Sarah Hales, and Dr. Jacqueline Galica contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Danielle Petricone-Westwood and Elisa Stragapede. This manuscript was written by Danielle Petricone-Westwood, Dr. Sophie Lebel, and Elisa Stragapede, and all authors commented on previous versions of the manuscript. All authors read and approved this manuscript.

Corresponding author

Correspondence to Danielle Petricone-Westwood.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethics approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the Research Ethics Board of the University of Ottawa (REB #: H05-17-02), Queen’s University (REB #: NURS-455-18), and the University Health Network (UHN, REB #: 18-5213).

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Informed consent was obtained from all participants in this study.

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Petricone-Westwood, D., Hales, S., Galica, J. et al. What do partners of patients with ovarian cancer need from the healthcare system? An examination of caregiving experiences in the healthcare setting and reported distress. Support Care Cancer 29, 1213–1223 (2021). https://doi.org/10.1007/s00520-020-05599-3

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