Em Rabelais1,2, Lamia P Barakat3,4, Connie M Ulrich4,5, Nora L Jones6, Janet A Deatrick5. 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@gmail.com. 2. The Children's Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, PA, 19104, USA. em.rabelais@gmail.com. 3. The Children's Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, PA, 19104, USA. 4. School of Medicine, University of Pennsylvania, 3400 Civic Center Boulevard, Building 421, Philadelphia, PA, 19104, USA. 5. School of Nursing, University of Pennsylvania, 418 Curie Boulevard, Philadelphia, PA, 19104, USA. 6. Center for Bioethics, Urban Health, and Policy, Lewis Katz School of Medicine, Temple University, 3440 North Broad Street, Suite 200, Philadelphia, PA, 19140, USA.
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.
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.
Authors: Lonnie K Zeltzer; Christopher Recklitis; David Buchbinder; Bradley Zebrack; Jacqueline Casillas; Jennie C I Tsao; Qian Lu; Kevin Krull Journal: J Clin Oncol Date: 2009-03-02 Impact factor: 44.544
Authors: Kirsten K Ness; E Brannon Morris; Vikki G Nolan; Carrie R Howell; Laura S Gilchrist; Marilyn Stovall; Cheryl L Cox; James L Klosky; Amar Gajjar; Joseph P Neglia Journal: Cancer Date: 2010-06-15 Impact factor: 6.860
Authors: Gregory T Armstrong; Qi Liu; Yutaka Yasui; Sujuan Huang; Kirsten K Ness; Wendy Leisenring; Melissa M Hudson; Sarah S Donaldson; Allison A King; Marilyn Stovall; Kevin R Krull; Leslie L Robison; Roger J Packer Journal: J Natl Cancer Inst Date: 2009-06-17 Impact factor: 11.816