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Mother-caregiver expectations for function among survivors of childhood brain tumors

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Abstract

Purpose

Children diagnosed with brain tumors increasingly survive to adulthood, although they do so with needs often requiring continued parental caregiving. We sought to describe the nature of caregivers’ expectations about survivors’ function and how expectations connect to ongoing management and decision-making.

Methods

Forty-five qualitative interviews with mother-caregivers were conducted and coded for themes related to expectations for their adolescent/young adult children living post-childhood brain tumors.

Results

Five main themes emerged as integral to mother-caregiver expectations: realizing a difference in the survivor, noticing limitations to independence in the survivor, memories of learning about clinical prognoses as understood from consent meetings and education, managing these realizations, and acknowledging unresolved challenges.

Conclusions

Caregiver expectations are influenced by both initial clinical interactions and contemporary family dynamics and require individual- and family-specific survivorship planning. As caregiver expectations can influence management behaviors that impact outcomes and possibly independence, implications for clinician-caregiver shared decision-making are substantial.

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Author information

Authors and Affiliations

  1. Center for Bioethics, Urban Health, and Policy, Lewis Katz School of Medicine, Temple University, 3440 North Broad Street, Suite 200, Philadelphia, PA, 19140, USA

    Em Rabelais & Nora L. Jones

  2. The Children’s Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, PA, 19104, USA

    Em Rabelais & Lamia P. Barakat

  3. School of Medicine, University of Pennsylvania, 3400 Civic Center Boulevard, Building 421, Philadelphia, PA, 19104, USA

    Lamia P. Barakat & Connie M. Ulrich

  4. School of Nursing, University of Pennsylvania, 418 Curie Boulevard, Philadelphia, PA, 19104, USA

    Connie M. Ulrich & Janet A. Deatrick

Authors
  1. Em Rabelais
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  2. Lamia P. Barakat
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  3. Connie M. Ulrich
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  4. Nora L. Jones
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  5. Janet A. Deatrick
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Corresponding author

Correspondence to Em Rabelais.

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Funding

This study was funded by the US National Institutes of Health National Institute of Nursing Research (F31NR013091 [Em Rabelais], R01NR009651 [Janet A. Deatrick], T32NR007100 [Em Rabelais]) and the American Cancer Society (122552-DSCN-10-089 [Em Rabelais]).

Conflict of interest

The authors declare that they have no competing interests.

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Rabelais, E., Barakat, L.P., Ulrich, C.M. et al. Mother-caregiver expectations for function among survivors of childhood brain tumors. Support Care Cancer 24, 2147–2154 (2016). https://doi.org/10.1007/s00520-015-3013-1

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  • DOI: https://doi.org/10.1007/s00520-015-3013-1

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