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Barriers to psychological care among primary caregivers of children undergoing hematopoietic stem cell transplantation

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Abstract

Purpose

This substudy of an intervention trial aimed to describe barriers to participation in psychological care among primary caregivers of children who were about to undergo a hematopoietic stem cell transplantation (HSCT), including demographic and medical correlates.

Method

Three hundred and twelve primary caregivers of children undergoing HSCT who were approached to participate in a psychological intervention trial (n = 218 enrollees and 94 decliners) completed a measure of barriers to psychological care.

Results

The most frequently endorsed barriers to care were focusing on the child as priority, not wanting to leave the child’s bedside, and already having adequate psychosocial support. The least frequently endorsed barriers were location, wait times, and stigma around seeking psychological care.

Conclusions

Results suggest that explaining how psychological care for a primary caregiver can positively affect their ill child may reduce barriers to seeking needed support services. Certain practical barriers to care may be irrelevant in inpatient settings where psychological support is offered.

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Acknowledgments

This work was supported by funding from the National Cancer Institute (R01CA127488, P30CA072720). The first author was also supported by funding from the National Cancer Institute (K07CA174728).

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Authors and Affiliations

  1. Department of Medicine, Section of Population Sciences, Rutgers Cancer Institute of New Jersey, 195 Little Albany Street, New Brunswick, NJ, 08903, USA

    Katie A. Devine, Sharon L. Manne & Shannon Myers-Virtue

  2. Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, Atlanta, GA, USA

    Laura Mee

  3. Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Abraham S. Bartell

  4. Department of Psychiatry, Columbia University Medical Center, New York, NY, USA

    Stephen A. Sands

  5. Department of Biostatistics, Rutgers University School of Public Health, Piscataway Township, NJ, USA

    Pamela Ohman-Strickland

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  1. Katie A. Devine
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  2. Sharon L. Manne
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Correspondence to Katie A. Devine.

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The authors declare that they have no competing interests.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Devine, K.A., Manne, S.L., Mee, L. et al. Barriers to psychological care among primary caregivers of children undergoing hematopoietic stem cell transplantation. Support Care Cancer 24, 2235–2242 (2016). https://doi.org/10.1007/s00520-015-3010-4

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  • DOI: https://doi.org/10.1007/s00520-015-3010-4

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